Blogs from 2016 - 2020
I never really know where to begin when I start these blogs but tonight I don’t really know how I will stop. No surprise, 2020 has been HORRIBLE for just about everyone. Grateful for some things, yes, of course. Other things…not so much. I will be super happy when the clock strikes midnight and it is 2021. Who else is with me!? It has to be better than 2020, right!?
Alzheimer’s is still taking it’s toll on her. We were told that she is entering the “End Stage.” It’s time to start looking for a place for her. We can’t keep her home much longer. It’s too much. He is SPENT. Emotionally, Physically – it’s a disaster. She is absolutely clueless. She has no idea where she lives, who she lives with, who we are to her half the time. I find it comical sometimes and downright sad others. He’s struggling with it. As he said not too long ago “Life as I have known it for 50 + yrs will be over!” I responded with “life as you have known it was gone about 5 yrs ago. It will be OK! You will be OK and I need you to not be so mentally taxed and physically exhausted”
I now am showering her far more frequently because she flat out refuses. I make it is funny as I can with her but it’s not easy to see your mom naked all the time acting like a toddler in the shower. I said that to her the other day – “Jesus mom- you are truly like having a 3 yr old!” She laughed and laughed and laughed and then flashed me her old lady boobs and shook her naked ass in my face! Yup – She’s 3! My husband was there the other day (Weds) while this all went down. He of course saw nothing but could hear us. He is still laughing!
She flat out told the boys yesterday she was not their grandmother. It was pretty funny – we actually have her on video. My oldest said “You are my grandmother!” She said “NO!!!” I said as I laughed, “Well, If I am your daughter, and they are my kids – what does that make them to you!?” Her response “Nothing!” I said “Good point – they are nothings but they are still your grandsons!” She laughed again! She absolutely could not tell them their names. She knows she loves them but she doesn’t always know why. At least she is kind to them. They adore her and thankfully they share our senses of humor because both me and their dad can find humor in most things!
Later in the day when my dad came home from some tests he’d had with my husband as his uber, she told them this long story about how she was exhausted because she had been with FIVE men that day! I looked up from my computer as I was working and said “WHAT!?” She repeated and looked at me like I was clueless and said “Yes, five men!” I said “Well you are a slut but good for you, you go girl!!” She giggled and then she then looked at my husband, pointed at me and said “And SHE was with me!” I said “What on earth!!??” I said “Be careful, don’t say that out loud, my husband gets SUPER JEALOUS so he doesn’t want to hear about that!” She looked at him again nodded and said “She was with FIVE MEN” He said we’d talk later but he was super mad and was disappointed it wasn’t ten men! She laughed and laughed some more. That is the funny / weird things about Alzheimer’s – toward the end, some get very sexual! Apparently she is one of the some! OH GOODY! LOL
The stories she tells now are truly unbelievable – she can’t complete a sentence half the time but she can create stories like I never imagined possible!! Where were these stories when we were going to bed as kids!? Although, I suppose the vision of my mother with five men is never appropriate whether you are 5 or nearly 50! God help me!
She does super fun things now like yogurt in her coffee, creamer in her orange juice or piles of blueberries in her coffee! Always wondering how it got there. Hmmmm….How did it get there!? A typical day for her, she wakes up at 5:00 and starts packing her things because she has to go home. It’s time for them to go! Not sure where she is going but she is home. At least for now. This happens at least 5-6 times a day.
The last appointment at the memory center confirmed what we suspected – she has had a rapid decline in the last six months. She is now entering “the end phase.” I said this earlier. It’s time to make the decisions, the hard decisions we’ve talked about forever! Sucks but time. We don’t know how much time we have left with her. By all accounts she is still young and beautiful and on the surface you would never know she has the mind of a 5 yr old but it’s happening and it’s happening fast. Typically the end stage is 2-3 yrs. We will see. Only time will tell with that!
So, as we face the challenge of what to do and where to put her we got a dose of a reality that we were absolutely not expecting. I think I mentioned in my last post that Dad randomly coughed up blood (probably around mid-May!) well, they chalked it off to “dry air” – Guess what my friends – it was not in fact dry air!! Nope-not even close!! The doctor started sending him for tests after this, then more tests, and probably even a few more – last week the verdict was in CANCER!! Esophageal Cancer – Yes you are reading correctly!! You know it’s bad when the phone rings and you hear “Les, the doctor called – you need to come over!” I don’t even remember driving over there and I think I was there in under 4 minutes! I think I knew the moment I heard “He is coughing up blood” but he wasn’t worried so neither was I at least on the surface!
Are you friggen kidding me right now!?! This is not happening. This is not real life. Google it – No Actually Don’t! It’s not pretty kids. Don’t go down that rabbit hole! Oh, ok…fine I googled it! Yup – it’s bad. We have to wait, we have to talk to the docs. We don’t know much so we wait a little longer- a WEEK we wait a week!! Every time the subject comes up I feel lightheaded. She asks “Who has cancer!?” He responds somewhat angrily “ME!! I HAVE CANCER!” I bite my tongue literally waiting for “My MOM” to appear – the one that would have burst out crying, planned the funeral, chosen her outfit and started praying and crying every time she looked at him or said the word C-A-N-C-E-R…instead she looks at him and says “Oh, that’s too bad!” and goes back to her coloring books! I am literally having an out of body experience – I am positive of this!
The mad dash scramble for more help with her is ON. I have been begging him to do this for a year but now we have no choice and I am on it! It’s now my responsibility! My sister is helping but we can’t call the same people so I have taken it on for now. Calls are being made. We need more care for her stat because now what! He has to focus on himself. He needs to fight but does he have any fight left in him!? Who knows! This is not real life- I have to be watching a horror movie or at least Candid Camera – someone please tell me this is all a complete joke!? PLEASE!?!?!
How do we get rid of assets, get her on medicaid, mass health, you name it – needs to be done, YESTERDAY!! I call lawyers – they literally want a small fortune. That is one way to get rid of any assets! Are you kidding me, $5000 to fill out forms!? You have to be kidding? Right!? Why would people spend that kind of money on forms? Are there places /spaces open? Are there rooms for her? Well, Long Term Care facilities sadly lost a lot of residents because of Covid so there are openings where there used to be wait lists!! If we put her in, who gets to be on the list to see her!? Has to be me. He is now even more compromised. OH MY GOD – My head hurts!! Make it stop!!
My village has stepped up. I am already using them as sounding boards. They are here and I know that I can call with a need for help and they will be there within seconds. They are praying hard for them, for me! Thank God, because we need it! They are on the ready with a phone call, a bottle of wine, advice and knowledge as some have sadly gone through losing parents or dealing with cancer, putting family members in homes, you name it been there done it. They will stay with mom if T or I can’t so we can work, WHATEVER! I know this!! Thank God! We sure are a motley crew if you put all our stories together! Grateful for them and sorry that they too have dealt with craptastic hands! We all come out smiling through tears so I suppose we are all going to be ok!
POA’s are in place. Health Care Proxies – Irrevocable Trusts, Medicare, Medicaid – Forms, More Forms – I am truly spinning. Is my father dying? Is my mother?! Well, I guess we are all dying when you get right down to it, right!? What is happening. I need to breathe! I can’t cry because truly if I start I may drown so I just keep swimming!! I allowed myself 5 minutes last Sunday but that’s it! My husband looked at me as I was crying (I had gone over to shower her!) and said “are her old lady boobs that bad!?!” and there I go laughing and we are back folks! I have people that need me I have got to keep going.
Today was the day – D DAY!! We get the results of the Pet Scan and we get all the news. I am 100% prepared for the worst! Remember – I googled it! Off we go to the hospital! I somehow muster up the courage to say to him before we leave their place without crying “Dad, if it’s bad -like really bad and you choose to not treat it and just enjoy the time you have left, I completely understand and will respect and stand by whatever decision you make! You can’t worry about mom – We’ve got her. T and I will make sure she is ok – You have to take care of you now and do what’s right for YOU!” I can’t believe I said it without crying somehow – I truly don’t know how because I am crying as I type this!
My sister came to stay with her because only one of us was allowed in with him. I am kind of surprised that they even let me know in too but I am guessing these experienced doctors know when getting bad news another set of ears is absolutely necessary. I pulled rank being the oldest. I am going -it’s not a question. I realized as I was getting ready I never even gave my sister the option. She didn’t ask either. As I am driving to their place to get him I feel light headed and nauseous! What is happening right now?! Am I sick? Is this Covid on top of everything else? Oh wait -probably anxiety? Great – now I have anxiety!?? Seriously? I can’t pass out while I am driving. I will kill us if I pass out – Jesus take the wheel I am not sure I am going to get us there safely! Deep breaths Deep breaths!!
We arrive, I feel shaky, nauseous, dizzy! Get it together woman!! DO NOT CRY -DO NOT!! We wait what feels like forever! Literally -FOREVER. In they come – they are asking questions, my sis is conferenced in. We are listening, waiting. WHY ARE YOU ASKING SO MANY DAMN QUESTIONS?? Isn’t this already in his file!? Cut to the chase. IS HE DYING OR NOT!?!?!?!
About 30 minutes in they are examining him. I see them touching his neck/throat. I am listening as they talk. I catch the Radiologist eye. I know immediately it has spread! It’s not just in his esophagus it’s either in his mouth or his throat but has definitely spread! OH SHIT.
Finally the radiologist sits down and says “So, here is what we are dealing with….” BREATHE Les, BREATHE for Christsakes BREATHE!! I hear – 2 spots on the esophagus, and mouth/throat – OMG. OMG. OH MY GOD! I then hear, it’s curable but it’s the worst type of cancer to fight because it’s complicated. It’s curable / treatable but it will not be easy. Not at all. They don’t sugar coat it. It’s going to be tough. It’s going to be hard and we still need to get more info on the throat/mouth stuff. I guess this shouldn’t be a surprise. When you have lived life as a pipe smoker and an “excessive drinker” their words not mine (I would have said Alcoholic) for a good part of your life this is the cancer you get. Google it! He stopped drinking probably 10 years ago but the smoking – well that pipe is often still around!
Seven to eight weeks of radiation -5 days a week. One day of Chemo a week. Who will stay with her – can he drive himself!? Feeding tube!? A feeding tube is definitely going to have to happen! Shit! More procedures….this is not pretty. This will not be good. How the hell is he driving to Newton Wellsley /MGH every day!! Who is staying with her because she can’t go with him – Thanks Covid. I work, my sister works! Five days a week for 7-8 weeks? Even the most amazing of employers which thankfully we both have want to see your faces sometimes! God Help me!! God help us! As I am gasping for air. Thank God for masks because they couldn’t see me biting my lip so hard it still hurts 8 hrs later! The radiologist looks at us – “We need to move you closer to home!” You can’t do this every day and with your wife it will be impossible!” Thank you sweet baby Jesus!! I had asked about this the day before when talking to the Care Coordinator but we weren’t sure about leaving his team. He has the best. Heads of Departments from MGH!
Long story short we will finish all the testing at Newton Wellsley /MGH- he will be back there tomorrow at 8am for more info on the throat. I will stay with mom. Rise and shine – I will roll out of bed and be there at 6:30 and work from there! We will have a couple of weeks off and then it will start. They will transfer us to the Brigham . The radiologist looked at the staff and said “Oh!! They are my former Residents!! I am emailing them now” He did! He emailed as we sat there. I said “You are the head of MGH Radiology?” He nodded and I said “Well, they are well trained then!” He chuckled and said “Well, I like to think to hope and think so!” We will be at Sturdy. The Brigham has a radiology campus there so he can drive 5 mins for his radiation. We will figure it out. We don’t have a choice. I say finally – give it to me straight – what stage is he in?!?! They say “Esophagus is stage 2 or 3” and Throat we are fairly certain stage 3. I swallow hard and say “OK!” They say “you are in for it – it’s a fight but you can win it” – I feel better that they didn’t say put your affairs in order but am also not confident that it’s not further along than they think, especially the throat.
Time will tell and we still have more appointments and more info to gather but for today, that is enough! We don’t talk much on the way home. I say “Well, it could be worse!” He disagrees! I say “Well, I get that BUT you are 75 and have been healthy until now. Your kids, your grand-kids, healthy! Mom – healthy just off her freaking rocker which can be funny! – Over all we are lucky and it truly could be worse! Roofs over our heads, food on the table, friends and family that love us. We are lucky! They could have told you to wrap it up and call it a day. They didn’t so for that, let’s at least be grateful for the moment!” I don’t think he’s grateful at this moment! I don’t really blame him but the polly positive in me has to find something good! Today’s good is that we aren’t planning his funeral, at least not yet. I can see that he is stressed to the max. He’s snippy as Hell. I tell him to be nice! We are stressed too! We will get him some things to bulk him up because he needs to gain weight before having treatment. That is doctors orders. I tell him we will take care of her and it will get settled he needs to not worry about her (impossible!) only himself right now! It will be ok!!
We get home and mom immediately says “ Where have you two been!? How was your day!?” He says “At the doctors, it was Great! I have cancer!” Her response “Oh, that’s too bad!” …..Yes, it really really is! And so begins our next chapter – buckle up kids we are in for one hell of a bumpy ride! This is going to get interesting!
Well – we are on week 11 day 75 of Covid-19. It sucks. Not just for me – for EVERYONE!! Alzheimer’s or not but especially if you are dealing with “The Big A” as we like to call it here at the Cammett / Murphy Compounds. Day 75 of Shelter In Place. It’s nuts I tell you -NUTS. So nuts in fact I am not even really sure where to begin. I guess I never know anymore where to start. This whole thing is such a cluster at times it makes my head spin.
When this first started I was scared. Terrified actually. I had just started a new job and I was still going into the office. Those first two weeks I was at the office EVERY SINGLE DAY. That’s fine. I was so grateful to have my new job. I was scared to death as a recruiter and people being laid off left and right that I would be the first to go. I mean, who is recruiting right now!? Fortunately for me I wasn’t and my amazing company is still hiring – health care and physical therapy is considered essential so I am working and busier than ever! YAY! That however is not the point of the story. What the point is “everyone” could have it! Everyone could be a carrier and here I am out in the world day after day – I can’t be around them. I can go nowhere near them. They are high risk. Although technically “healthy” with no underlying conditions with the exception of Alzheimer’s (which isn’t a condition we have to be careful of with this) they are “elderly” and that is it! Still – God Forbid I carry it to them! Nope, not risking it!! In theory I was going to do the right thing and keep my distance.
After a few weeks of literal ditch and drop with meals I’d prepped or groceries I’d picked up I started to chat a little longer and hang out a bit at a distance. I could see that it was wearing on him – BIG TIME. She is CLUELESS. Mom has always been overly affectionate. Loves to hug/kiss the boys. Well, if she gets near them they say “NO!!! You can’t touch me!” she will laugh and say they are ridiculous and truly believed they were lying about the pandemic. “That’s CRAZY talk” He would explain over and over again and shake his head. Every time she sees us with masks (required to enter their building) she asks “Why are you wearing those!?” And – Repeat!
At the end of April my hubby turned fifty – FIFTY!! How could I be married to someone so old!?? Well, at that point (probably around wk 6 of lock-down!) Dad said “we would love to come for cake!” I had to make a decision. Do I let them in?! It’s been 6 weeks – He is going BANANAS. Do I spend more than 5 mins with them at a non-social distant level without masks!? *I can hear you all gasping!!* I was now down to 2 days a week in the office and I only go to the grocery store and maybe Target if I have to pick up a prescription. I am super careful and so are they. I have to take the risk. I can tell he is about to lose his ever loving mind. So, over they came. They didn’t stay long but long enough for a short visit, a few laughs and some cake.
As they were leaving I said “Can you believe he is 50? He is sooo lucky to be married to someone so young and beautiful” and her response was “How old are you?!” I said “48!” with a chuckle! She said “Wow, so if you are 48 then I am…..” I cut in with “OLD” at that point she stopped dead in her tracks, looked me right in the face and said “I beg your pardon – if you are 48, I am 2 years younger!” I said “Really!?! So you had me two years before you were even born?! That’s fantastic!!” She laughed and said “Yah Right!? I had you! haaa haaa” ….it occurred to all of us at that moment that she truly believed I was her older sister! Great – she hated her in the end and was truly terrified of her at times and now I am her!! Awesome JUST Awesome!! Hubs started laughing hysterically! My oldest said “wait…who am I if she is your sister!?” Her response “Ha, you know who you are!” and he laughed and said “I definitely do but do you!?!” and she giggled and laughed and said “Of course I do!” and walked away! Five Bucks – she had no idea who he was at that moment.
As time has worn on I have spent more time with them. Not tons because I am trying desperately to be careful but there comes a point where my Dad’s mental well being becomes more of an issue than the risk of Covid and I have to protect that as well as them from Covid. As I have mentioned previously her hygiene is all but lost! She certainly doesn’t do her nails anymore and her toes / feet – are you kidding?!?! We were going for pedi’s together every month but that hasn’t happened since probably December!
Right before Mother’s Day I got a text that said the night before he heard something ripping in their bed – sure enough her toe nail had torn a 6” hole in their sheets! OH MY GOD – GROSS!!!!! So the plus here – YAY New Sheets but Jesus that’s disgusting!!! So on that Saturday- the day before Mother’s Day, I went over to the house – I bought a few different colors of polish and brought my best nail prep stuff. I kicked him out for a few hours and gave her a pedi, some flowers, lunch and we played War for about an hour! She LOVED it. She kept laughing and giggling every time we hit “War” and if it was a “Double War” she just thought that was the greatest – especially if she won. She had so much fun and so did I. It was nice. It wasn’t our typical day out of shopping and eating but it was the best we could do with everything being closed.
Her new things are some of the old things – She is constantly asking where / when she is going “home” where are her parents? Shocked when we tell her they are both long gone. She will crawl into bed fully covered (pj’s / robe etc) and when he says “what are you doing?? She will respond with “I don’t think that I am ready for you to see my like this yet!?” I can’t help but laugh because frankly after 50 years he’s seen it all! LOL
Back to the hygiene – she no longer washes her hair. I have gone over and put her head over the tub and washed it but lately it’s been BAD. I will text every few days and say “How is it!?” and when I get the “It looks like a tub of lard!!” I head over for “Shower Time!” I walk in and say “let’s go!! Get in the shower!!” She won’t do it for anyone but me. OH GOODY!! Naked old lady boobs! YAY!! I have to stand there as she washes, hand her the soap and say “Wash your pits, now shave this one I’ll hold the soap” then the next one! Then I say wash your “privates” then I have to say “turn around and wet your hair – here is the shampoo” the other day she put the soap in her hand and said “What do I do with this?” I said “Head Mom – wash your head!!” She does it but WHEN did we stop caring about our hygiene. How can we forget to do something we did every day all of our lives?!?
She is EXHAUSTED when she gets out of the shower. Huffing and puffing like she just ran the Marathon. She can’t pick out her clothes so I do it for her. The other day I forgot to tell her to put on her bra and underwear so she didn’t. I walked into her room and said “Mom, where is your bra” her response “Oh – I don’t need one!” – well technically she doesn’t but let’s just put on some undergarments shall we! I had her a bra and undies and watch as she has to re-dress! God help me! I am so sick of seeing this lady naked and something tells me I am going to see this more and more! EEEK! Raise your hand if you never in your life thought this would be your reality!
No one gets why she will let me do it and no one else – My amazing cousin (her god-daughter) came to visit (she comes every month to give him a break!!), she tried desperately to get her to shower – NO WAY! She would not!! Why will she let me shower / coach her through it? We aren’t sure but I said to him “I think when I walk in all authoritative like that she immediately thinks that I am her sister so she just does what I tell her. I literally walk in “Hi Mom- Let’s go – Shower time – get in there – NOW!” and she does it. Without question. The other day she said “Did he call you and tell you to come do this!?” I say “Nope-I just know that you aren’t washing well and I need you to be clean so get your old lady butt into that shower- hustle!!” She usually laughs and gets in and does as she is told! I guess that is the plus to being the bitch that scared her half of her life but I also don’t want her to be afraid of me ok, well maybe a little afraid if it’s time to shower!? LOL
We had a scare with his health a few weeks ago – when my cousin was here. They were all coming to dinner. They were coming at 5:30 – at 5:30 my phone rang. It was her. “So, your dad is coughing up blood – A LOT OF BLOOD” …WHAT!?!?!?!?? Oh my god – remain calm!!! Jesus Christ!!! NO!!! She called urgent care and they wanted to see him right away. He asked that I bring him. I think I was at their place in 2 mins flat! They let me go into the room with him. It appears that because their place has been so dry all winter he’s had a cough for months (not a Covid cough) and now with allergy season they believe that it’s just a bad combo. He’s been fine since but sweet mother of mercy! Are you freaking kidding me!! This is NOT happening – After all this was over and we got home, had dinner and they were gone I broke down. I cried and cried. It had never been an option before that he could possibly get sick or “go” before her and for a little bit that night I thought “What if?” What the hell would I do – how would I? Oh My God – PLEASE don’t let me ever have to find out. I have come to terms with the fact that she won’t be with me much longer – but I expect that he will be here a lot longer than she will be. There are no guarantees in life – we all know this but that was a little slap of reality that I really didn’t need that night!
We have convinced him to take a little break!- again my incredible cousin has offered to come stay for a few days so he can “get away” it took A LOT of convincing but he FINALLY agreed to take a few days to himself and go away. He is going to go to NH and spend some time reading and chilling out and not answering questions 100 times over. It is probably not nearly enough but for now it’s the best we can do. I will help her as best I can but she is taking on something not many can or would and for that we will always be in awe and eternally grateful.
My hope is that he comes back a little refreshed. A little bit less stressed and a little more able to tolerate the next few months of returning to our new normal! I am hoping that soon enough I can take her out again and give him his weekly breaks but who knows! Until then, we do the best we can. We keep our sense of humor always but damn, it gets harder and harder with every day for him to find it and honestly, who can blame him.
This a terrible disease – this pandemic is terrible! It’s taken more from her than I thought. Maybe it’s not the pandemic. Maybe it’s just time – time has taken it’s toll. Not seeing her nearly the amount of time that I had been is noticeable. I see so many changes. So many things that scare me. I think almost as scary as the changes in her are the changes in him. We read about it. We hear it – that this is mentally hurting people. The seclusion, the isolation – he isn’t alone so why would it bother him. Well, simply put he is alone. He is with a woman that he has been married to for 50 + yrs that no longer bathes, can’t cook, can’t help him or herself – it’s like having a 5 yr old at age 75!
We have already discussed that when this is over – we have to REALLY discuss the inevitable – a Nursing home. It makes us all sick. We don’t want to do it but there are wait lists EVERYWHERE and if it takes a year or two he will be at the point where he won’t be able to care for her any longer. It’s getting to that point now. We have to protect her but also him.
Life is hard. Life sucks sometimes. We all have our crap to deal with. We won’t have a pity party about it but Alzheimer’s – It’s EXHAUSTING! It’s repetitive and more than anything – Heartbreaking!
Navigating Alzheimer’s and Covid-19!
So, I am not sure where to begin. I have created this in my head 100 times. I have thought about what to say and what not to say and there seems to be nothing appropriate at all. I am not all whoa is me because that’s not how I am and there are people with far worse thing going on in their lives but this is my life and my “blog” so I guess I need to just keep telling it like it is.
She is regressing at a rapid rate. I feel like a broken record here. Every time I write it’s because she is slipping further away. She wakes him up almost nightly now saying she needs to go home. Her parents will be upset that she is staying with him, or she gets up at 4am to get ready for work. She’s been retired for over 10 years at least! She thinks the school that their complex over looks is her old elementary school. She has no clue that they are living in the place they are living as she is constantly packing a suitcase to go home. How much longer can we hold on? Can she?
In case you haven’t heard, there is a world wide Pandemic going on – Covid-19 aka Coronavirus. No big deal, right!? WRONG…Scary as hell. Some people are taking it seriously, others are not! I will admit in that first week (about 3-4 wks ago) I wasn’t worried. I thought the world had gone mad and was going a little nuts with this whole “social distancing thing” My sister started sending me panicky texts and I laughed and was like “Dude, you are an alarmist you …CHILL!” I kept going about my business and then at one point on a Saturday about 2-3 wks ago I went to take my mom out. I stopped and thought, hmmm….maybe this is not a great idea. I still needed to go but maybe she should stay home.
I texted him and said “I am going out – I will take her but based on the news it may not be a good idea. I have to leave that decision to you!” He said “TAKE HER!” now…was he hoping this may be then end for her!? One will never know! (Kidding!!!) but I took her. We went to the Wrentham Outlets. I had to return something and wanted to pick a few things up – one store! We had to go to ONE store! We did our thing and walked around a bit – ended up going to two stores but really the point was to be outside, walking, enjoying the afternoon as it was gorgeous out. We weren’t gone long enough for a real break for him so we even stopped for a pastry on the way home at a local bakery.
As we left the outlets I suddenly felt the need to dip us in bleach and that’s when it hit me. I will not be afraid but I will not be stupid!! I immediately reached in my purse for my Wet One’s – I always carry them – hopefully I don’t run out because now I can’t find them anywhere!! I handed her one and said “Mom, CLEAN YOUR HANDS – really clean them!” She did.
After that we stopped for the goodies at the bakery – again – Wet Ones. She looked at me funny and I said “Mom, PLEASE, just do it!” She did. As I was bringing her home she said “Turn there – it’s quicker!” She was pointing to the street I would turn to go home to my house. I said “Why would I turn there?” She said “I live over there”…I responded with “No, I live over there – you live straight ahead” She was not happy with me and was convinced I had no idea where I was going. As I pulled into their complex she huffed and said “So you aren’t bringing me home!?” I said “Mom, you are home!” This was a first – she always knew when she was home before today. She then saw my dad’s car and said “Oh good, Gene is here – He must be picking me up!” Me, “Sure mom! He’s here to pick you up!”
When we walked into their place I immediately went to the sink. I said “Mom, come wash your hands!” She of course said “I’m fine” I said “No mom, please come wash your hands! He reinforced it telling her to wash as well. There is a pandemic and I don’t want you to get sick” She laughed and ran her hands under water for 2 seconds MAYBE and we said it again…I made her do it with me singing the ABC’s…Sweet Lord, she doesn’t even wash her hands correctly anymore. Not sure why this surprises me. She doesn’t wash herself correctly so why would washing her hands be any different.
I went home baffled at how much she had changed in a week! One week. The week or two before they were over for their normal Sunday dinner. We do it as often as possible. She couldn’t remember my son’s name. Her FIRST grandchild who we have often dubbed the second coming because he was the first grandchild on both sides and was the only for three years until his little brother came along so to say he was beyond spoiled may be a touch of an understatement and I am not sure which side was worse! He is a sweet kid. Always so good to her. He took it in stride and teased her and said “What’s my name? and who am I?” She couldn’t answer. I believe it eventually may have clicked but I am not sure. I know inside a little piece of his heart broke although he would never show it. So did mine.
That Saturday at the Outlets something was different. It was more than her forgetting a name. She was more confused than normal if that even makes sense. She seems so tired just walking from the car to a store. I kept saying “hustle up lady!” and she would laugh and stay at that same pace…God Help me. I am 5’11” I don’t exactly have a short, slow stride. This is killing me. Not knowing where she lived? She always recognizes it even if she can’t tell you how to get there she at least knows it as you approach. Not that day.
A few days later it was the second coming’s birthday. We obviously didn’t have a party. We couldn’t go out to dinner. We ordered out and they insisted on coming for cake. I didn’t think it was a great idea but I also know that there are not many birthday’s left where she will be able to come so how could I say no. He was insistent and I know soon enough seeing them will not be an option at all for awhile, so they came just for cake. She has always been very affectionate. She always wants to hug and kiss the boys. They both were constantly ducking for cover. I made it clear -DO NOT TOUCH THEM! We explained to her probably 100 times that night about Covid-19 and how we don’t want to get them sick. She laughed every time and told us to “cut it out – we are being ridiculous! She is perfectly healthy” It was tough to say the least but she didn’t get any kisses that night no matter how hard she tried.
Now here we are a week later – just one week. It’s bad. We are at a Shelter in Place. I am still working. I have to go to the office. I am grateful to have a job at this point. I JUST started 3 wks ago and as a Talent Acquisition Manager when your company is slowing the hiring to coast through this you do whatever they need to keep busy and earn your paycheck. Therefore projects that aren’t normally done with medical billing (essential employees) are getting done – I will work from home some when I am focused on recruiting but will be in the office a few days a week to help these great ladies out. I can’t go near my parents, not at all.
They need things! I am getting them for them and begging them to not leave the house. Last night I had to stop to pick up a prescription so I texted to see if they needed anything and he replied with a couple of things – I grabbed them, including melatonin to hopefully help her sleep through the night. When I got home I made some homemade chicken soup to bring with the other things they needed.
She has nearly run out of coloring books. This could be a disaster for him. She colors all day – nothing to color could wreak havoc on his day as if that doesn’t happen already being trapped in the house. I found 2 that I had at the house. Amazon isn’t delivering right now! I checked! Believe me – I checked! We can print pages but she has her routine so that’s our last resort! So, I sent over one that is full of cuss words – The title is Cheer the F*ck Up! NICE! I couldn’t go inside. I had my youngest run up -open their door and drop on the table and run. At least he texted me a little bit after I got home and said that she was laughing hysterically at the coloring book. She assumed her sister had sent it to her because that’s how she talked! Oh boy – her sister has been dead for a few years already. Just go with it.
He finally got respite care! FINALLY. Some relief for him – after 2 weeks it’s been put on hold because of well you guessed it Covid-19. Only emergency respite is happening right now. She is not “an emergency” I have to disagree a bit because his sanity is my emergency! I can’t give him a break right now. I can’t take her to the outlets. I can’t even take her for a walk because she won’t understand why I am on the other side of the street in order to socially distance myself. If I was only at home not going to work, I would risk it but I am not, I am around too many people daily so I can’t. This sucks!
I heard a few songs yesterday on the radio – Kenny Rogers “The Gambler” and I cried all the way to work! Why? Well, we used to sing that song a lot with my mom as a kid along with every John Denver song every written. He died this weekend (Kenny Rogers) and I felt for a second, so had my childhood. It was long gone. As I got into the car to come home Sarah McLachlan “I will remember you” came on – Seriously!?!?! All I heard was “I will remember you…Will you remember me?…” and I lost it. Cried like a baby most of the way home. Because the truth is maybe she won’t remember me but I will always remember her.
Why am I so damn emotional – it has to be the stress of this. I think we are all feeling it in different ways. Apparently songs are triggering me to be a ridiculous mess. I am a control freak- my friends will get a kick out of that statement! LOL I can’t control any of this. None of us can. If I so much as cough I am convinced I have it and if I don’t cough I think – When is it coming?! This is crazy and scary and we are all just doing the best we can – BREATHE.
I don’t know how to help get them through this time. I feel helpless. Truly helpless. It could be two weeks or it could be an indefinite amount of time. We won’t know until we know. The important thing is to keep them safe through it. So, I hope she remembers me when we are done and through it but if not, I will remember her, Always. I can say this because even if my time comes to get this dreaded disease, it appears that she will be in my memories just like her mom is in hers. Funny how that works. I may not remember my kids and she may not remember me but we always remember our moms.
Stay safe and healthy out there my friends and if you are navigating this with a parent with Alzheimer’s or Dementia – make sure you watch them as they wash their hands and give them extra wipes or hand sanitizer if you have it! This is uncharted territory for so many of us. There are no right or wrong answers. All we can do is our best to get through it. Just remember to always be kind.
Wow! A new decade. Crazy to think the world was going to end 20 yrs ago and here we are 20 years later still plugging along. It is hard to believe that in a few months we will have hit the four year anniversary of D -Day (Diagnosis day!) It hasn’t gotten better, it’s not going to. It’s still laughable at times and at others I want to run screaming.
I feel like in the last few months she has been on a pretty steady decline. I am always saying that but these last few months (August -now) have been interesting to say the least. Especially through the holidays. It’s always the same but not. Things that were ok are less ok and things that were not ok are so so bad.
For starters, Let’s just get these next few things out in the open and move on quickly – Accidents – she has them. It’s not pretty and she would be mortified if she new I shared this but it’s part of it and anyone that is dealing with this should know and be prepared! Let’s just toss it out there in the beginning of this and move on to happier, lighter topics! They have happened a couple of times with me. I know they happen frequently with my dad -most commonly in the evening/night (sleeping) I believe and hope that she is now wearing depends 24/7. It is what it is What is concerning to me is that she had them (bowel movement!) and didn’t even realize. It wasn’t until I questioned her a few times on the smell and finally bluntly said “mom, did you have an accident!?!” that she felt and realized that yes in fact she had. Cleaning her up wasn’t easy and she didn’t even really know how to clean herself. She was about to put her incredibly soiled underwear in the regular laundry, she refused to shower even after it being suggested numerous times etc. She put the soiled pants back on until I told her she needed to change again immediately! So awful to see this piece of it. I get it but I really never thought about it happening until it did. You think – WHEN did she get to this point that she doesn’t even know she is sitting in her own feces! The first time it happened, I made light of it with her as we walked into their place. I said “Mom, happens to the best of us -I feel like I could have an accident often. Surprised I haven’t yet!” She laughed and said “Did I have one!?!” Yes mom- Yes you did!! I got her cleaned up and when I left, I sat in my car and cried. I wanted to scream. I can’t believe this!! WHY is this happening!?!? It absolutely SUCKS!!!
Hygiene – I am not sure what she does in the shower but she isn’t washing herself well. She no longer shaves her armpits or legs. She rarely washes her hair. Sometimes when I go over I will say to him – “She needs to wash her hair – so greasy!” Never puts on makeup unless you stand there and walk her through step by step. I have started taking her for monthly (bi-monthly) pedicures to at least make sure that happens (less in winter!) but I believe I mentioned this before – she has sat in the pedicure chair and while being worked on has said “what are we doing here!?” I just point to our feet and say “getting pampered!! Enjoy! It’s crazy to think you are mid-pedi and have no idea what is happening. The only reason I wouldn’t is if I fell asleep in the middle of it. He now has to stand in there and watch her shower and guide her through step by step or she doesn’t wash herself. CRAZY!
Their 50th Anniversary was in October. She had absolutely no idea that on day that it was their anniversary or that when we went to celebrate it why we were celebrating them. Every time we told her she was shocked that it was their special day and said “Wow! 50 years! Really!?” Of course we joked that now was the time to get out of it if she wanted and she would just giggle. We kept the celebration small to not overwhelm her. Just a great dinner in Boston with our immediate family. It was truly lovely. I had to go over mid-week and pick out her outfit so there would be no argument and she would match. The fact that she didn’t realize/remember this one surprised me even given her current state because she has looked forward to their 50th Anniversary ever since I can remember. I figured she would at least have some sense of it. Nope, she did not a clue. Tough when you think about it. I am not even sure if she remembers her wedding day at this point. Imagine not remembering your wedding? I know some out there would like to forget theirs but yet you can’t because by all accounts it’s one of the biggest events of your lifetime. Ranks right up there with having your first child, buying your first home – pretty major event.
Her memory is probably not even 30 seconds. In fact, I know it’s not. She will ask the same questions / repeat stories over and over and over. This is not new necessarily but the timing is quicker. The boys love to tell her jokes because she will forget the moment the punchline is delivered and they will start over again with the same one. Annoying for me but they have a ball with it and she laughs just as hard every time because it is new to her. I can’t blame them really. She is definitely a great audience.
She is absolutely color blind. She never matches anymore. She used to be impeccably dressed. Now I see her and just shake my head. Today for example – All black, she looked great but then was wearing gray socks and blue shoes! She argued with me that she was wearing all navy and nothing was black! The color and coordination of outfits is gone. Mind blowing really considering she was a clothing / accessory buyer. She would die if she knew some of the outfits she now puts together. I want to go into the house and put labels like Gar-animals so she can match but I am not even sure that she will remember that you put the two monkeys together. I know we all struggle with our sight as we get older but damn, sometimes I think “do you not have a mirror in that house!?” I often say to him “What is she wearing!?!?” and he will shrug and say “this is the 5th outfit! I can’t do it anymore – I give up” Can’t blame him but I would be lying if I said I haven’t walked her back into her room to change when I have picked her up to go somewhere.
When I have her we often shop. She is clueless with sizes. I suppose I should be happy about this because I have spoken about this in the past – she used to go for a 3X and say “Here honey – this will fit you, try it on!!” Umm…thanks but I am not quite that big!! Which of course depressed me to no end that she thought I was that size! Now she is doing the opposite. She will grab me a small and say “of course this will fit you, try it on!” …I wish mom…I wish!! At least she thinks I am skinny now! I’ll take it. I can’t let her out of my sight when we are out. It’s like having a toddler. I am terrified of losing her. I lost sight of her for a few seconds while we were out Christmas shopping one day and I nearly had a panic attack. All I could think was that she was going to panic if she couldn’t see me so I panicked. When I found her I literally said “MOM, STAY WITH ME PLEASE!! Don’t wander off!” …like she would remember that!! LOL
Today we were out shopping and I tried on an outfit for an upcoming fundraiser (dressy) and the outfit needs to be taken in a touch at the chest! She said “My mother is a beautiful seamstress, she can do that for you!” I said “I remember and that would be awesome if she weren’t dead!” …Now normally she would have laughed and said “oh yes! that’s right!” Not this time!! I felt HORRIBLE! She was so upset. She said a very shocked “WHAT!? When did she die!!? How? How long ago” …Oh My God!!!!! I really felt terrible. Thankfully with Alzheimer’s she forgets so a moment later she said the same thing about her mom being a wonderful seamstress so I just said “Awesome, maybe she would be willing to fix it for me!” and we moved on!
While we are out shopping we always have a meal. She can’t read (I am sure she can read but she doesn’t comprehend) or if she can she doesn’t retain so ordering in a restaurant is done by me. She will just say “what are you having? I will have that!” I normally just say “You decided on this – ” and I then order her something that I know she likes. She eats well but doesn’t cut things. Her table manners are becoming those of a child in some sense. I watch her eat and feel like I should cut her food. She will take huge chunks and try to eat them. I say “Mom, cut that!!” and she just looks at me like my teenagers would and shoves it in her mouth almost to spite us. I am terrified that she is going to choke!
My Dad – She is a nervous wreck if he isn’t around. This has been building up for awhile and getting noticeably worse. They came for dinner (they come often) but this time in particular she rode over with my cousin and he went to pick up pizza. She must have asked 10 times before he got there “where is Gene?” “Is he coming?” “Why isn’t he here?” Today he dropped her off and I had to tell her 10 times we were going shopping because she couldn’t understand why he left her here. She is usually fine if I am out with her and we are running around but if I bring her back to my house she gets fidgety and nervous. She worries that he will wonder where she is and she wants to know where he is. This is so strange to me as she has always been so independent. I get it. She is no longer that person and he is now her everything and I don’t mean that in a romantic way. She
couldn’t function without him. God help us if something happens to him before her.
Interesting fact – She’s got no speed to her. She is suddenly the slowest person ever!! She used to be pretty speedy. I am 5’11” so I am fast just because of the length of my legs but she always kept up. She used to joke that she always got her exercise with me because she was at a jog while I was just walking normal. Now I am way ahead of her and have to stop to wait. The running joke was always how slow my dad walked, now I am fairly sure he is faster! Trust me when I tell you – that is tough to believe. She is also constantly taking deep breaths / sighs almost as if she is tired and I will say “are you ok?” She say “fine, why?” I tell her that she has just huffed/puffed/sighed and she says “oh – no, I am fine” …I can’t tell if she is or isn’t but she does it if we are walking, she can be just sitting there doing nothing or she can be doing something. Doesn’t matter.
Her stories of the past are no longer accurate at all in most cases or she will transpose a story that was something that happened to me and say it was her etc. This is the most notable change because long-term memory is usually the last to go. She has had some mix-ups in the past of course and it’s progressed but now I am not sure that any of her stories are really accurate anymore.
We just got through the holidays! Ah Christmas – she was the best Christmas gift (any gift) wrapper!! She LOVED to wrap gifts so for years I would separate the boys Santa gifts and bring them to her. She would wrap away and take that chore off my plate. It was awesome! This year I thought – I better do this with her. I took a Friday off and gave Dad the day off. We did errands, had lunch and wrapped. Well, she couldn’t even cut the paper. She used to not even waste an inch. She would put the gift on the paper and cut around it! Of course it didn’t fit so I then had to measure / cut and watch. I was wrapping 4 -5 gifts to her 1. She would ask about the tags etc and I said “leave everything mom – the boys already have grown and need to return some stuff but they can do it – I am not -I am done shopping!!” She would say “ok!” and then I’d look up and she cut the tags off. Suffice it to say I had a very large glass of wine (maybe a bottle) when that day was over!
Sometimes she does come out with some pretty funny stuff. We were discussing church not too long ago as my son will soon be confirmed and I said we needed to go. It was me, Connor (he’s getting confirmed) and my mom. He of course argued about “I don’t want to go to church!” My mom chimes in with this whole long story about how she goes every week and he should go. If he doesn’t go he will go to Hell (OMG – I would have sworn my grandmother was in the back seat at that moment!) She never misses it. He just looked at me like “what is she talking about” and he kept it going asking her all sorts of questions – Where do you go? When do you go? Where is that church? Come to find out she believes that she lives in Peabody still and goes to the church that she grew up in every week. She was actually offended when we implied that she hasn’t been in years!! Good Times. We laughed all the way home!
Every now and then I get a great text from him. She was eating her soup with a fork. She forgot how to cut lettuce. She had put butter in the linen closet… the list goes on! Most recently – I believe it was New Years Day – “She just asked about our sleeping arrangements”…apparently she forgot they are married! He explained that after 50 yrs of marriage he felt it was safe for her to sleep with him! I died laughing and said that he should have used that as he get out of jail free pass. You sleep here and I sleep in this room!! Get some peace and quiet!
She is always now asking for and looking for her parents. Today’s incident was tough because she was upset when I explained that they were gone but she constantly asks him what time they are coming. When will they be there. How long are they staying? It’s so interesting and yet sad to watch the regression! Frankly if they do show up we are selling tickets! They have both been gone a long time.
Not going to lie – today was tough. She was so out of it. I felt awful at points. I picked up Connor from work and as I dropped him off he joked that she was home. She started to get out of the car. I said “Mom, you don’t live here – I am bringing you home next. I just need to drop him off because he has things he has to get done.” When he got out of the car she looked at me panicked and said “Where am I going? Do you know where I live and how to get there!? because I have no idea!” I said “I do Mom, don’t worry!” In that moment I felt terrible for her. I can’t imagine not knowing where I am or where I am going. She truly in that moment had no idea. I also let my 14 yr old have it when I got home. I get it, he’s trying to make light and joke but he needs to learn to read me and when I shake my head, give him the “not now eye” he needs to knock it off!
For now, she still remembers us *(family) although she did today refer to me as her sister a few times. Whatever. I didn’t correct her but she has definitely forgotten friends and doesn’t know how to communicate at times anymore if /when they do come to see them which unfortunately isn’t nearly as often as I would hope. I get it. It’s hard for people to see but it’s frustrating because I know she would be there if she were able to visit with them if they were in this situation. Alzheimer’s sucks. It is scary and hard and not for the faint of heart but the person you know and love can’t help it. All I can say is be there. Spend time. Find the humor. Remind them of the memories. One day that person will be gone and that is all you will have – Memories! Isn’t it Ironic!?
Well, another summer has come and gone and we are back into the swing of things – full speed ahead. I wrote not too long ago but for some reason I have a lot on my mind and figured I should sort it out and toss it out there into the social media abyss. As we know, she isn’t getting better. Worse, far worse in fact. With this comes concerns over her every day care and how much longer can we do it without help, but also comes more laughter at the craziness of this disease and the things that she does and says.
August 17th – my birthday! Same day every year for 48 years now. I had some time after I finished up football picture day and before the hubs and I headed off to the GooGoo Dolls and Train so I figured I should spend some time with her and give him a break. I called my kids to see who wanted to come to lunch. Only one taker – My oldest. Off we went. We sat in town right near where they live and we ate. He told me before we left that it was his goal to make her wish me a Happy Birthday 17 times since it was the 17th! Well my son – mission accomplished!!
As we sat there enjoying our lunch he would say “Vovo, did you wish my mom a Happy Birthday!?” She would stop, “Oh Honey, is it your birthday?” Me “Yes, mom” “Well, Happy Birthday!” Or he would say “Mom, are you having a nice birthday!?” to which she would follow up with the same above comment! I would look at him every time and he would just chuckle and wink at me and it would start all over again!! At one point he said “Don’t you think my mom looks awesome – can you believe she is 38!?!” To which my head shot up a puzzled look and she said “Thirty-eight? WOW… You look Amazing!” Of course I WISH I was thirty-eight! I said “Very, considering I am Forty-Eight!” to which she said that she absolutely couldn’t believe it! I informed her that she was there so if she is lying about my age, now would be an awesome time to tell me! This went on for an hour. He definitely got a Happy Birthday out of her at least 17 times. God Bless his little heart – he’s lucky he’s cute and that I didn’t kill him. Jail on my birthday didn’t sound like fun and I had a concert to get to. LOL
As school started and the kids got into their routine so began another sports season. Football. The best time of the year. The chaos is in full swing but the chaos is organized. We have schedules now and although busy we have seemingly more free time than we typically do because we don’t have sports on weekends except for a few commitments for football. A little more time to spend with her. Thankful to be able to give him a break and to create some more memories with her. As we ease our way back into it (school) we are also gearing up for the Alzheimer’s Walk. It is our thing now – Three years running. I am looking forward to it!
September 14th -Our third Alzheimer’s Walk! I can’t believe we have been doing this for three years already. It seems like we have been doing it longer but in reality it hasn’t been. Probably a good thing as I may not have many friends left with the way I constantly pester them to donate to our team. To say that I am grateful for the donations, support, love, laughter is an understatement. Our team raised over $8765 this year – our 2nd best year. We are in the top 10 out of 247 Teams and I was in the top 10 out of 1775 walkers! Our first year we raised closer to 13K. We have now raised well over 25k, closer to 30k – that is nothing to sneeze at. I am so proud of our little team. There are teams with 25+ walkers that don’t earn as much as we do with less than 5 of us really fundraising! Go Joanne’s Journey!
This year I was asked by the Alzheimer’s Association to represent caregivers and hold the Yellow Flower at the opening ceremonies. I was honored. As the walk approached I decorated our flowers – we carry one of every color since we fall into every category – Purple – Lost someone to Alzheimer’s (my grandmother) Blue – You are living with it (Mom!) Yellow – You are a caregiver and lastly Orange – You support the cause. As the ceremonies were getting started I had to stand near the stage so I could go up and hold the flower as they read our story. She looked at me at one point as I was heading to the stage and said “where are you going?” I said “to the stage to represent caregivers!” Her response was priceless – She said “Oh, that’s wonderful!! (truly sincere voice) Who do you care for!?” * insert Mic drop! I said “ummm…You!” She looked at me and in all seriousness said “I beg your pardon!!??” so I said “No one mom – they just think I would look good up there!” With that I lost it. I looked at my husband, cousin and bff and we started laughing uncontrollably! She looked puzzled for a second and started laughing along with us. Now, I am not sure if she started laughing because she realized it was her or she forgot what she asked and was laughing along with us but yet had no idea why! We’ll never know but I choose to believe she just had no idea so she started to laugh along with us.
The walk was lovely – We decided to do the long route this year. She couldn’t do it. She stopped as we completed the loop and we had to finish and go back and get her with the car. Don’t worry – we didn’t leave her alone! Her friends stopped with her and waited. It was strange to see her stop. She always loved to walk and now she tires out so easily. I guess when you do nothing all day you tire easily. It was a bummer that she couldn’t finish but she did most of it. I truly don’t know that she will be with us (she will be alive I don’t mean that!) next year. It will probably be too much! It makes me sad but we will bet there walking to honor her still. As we walked we carried the decorated flowers – I decorated hers with the photo of her flipping us off as kids – all the petals fell out as we walked – except that one! Crazy!!
After the walk we always do a get together back at the house. Lots of food, lots of laughs. As everyone left and the crowd wound down we were all sitting together; me, mom, dad, hubs, cousin, boys – she looks around (now we all wear Joanne’s Journey t-shirts!) and she looks at her shirt, looks at us, looks around a few times and says “Wow, You know what’s weird!?!? We are all wearing the same shirt!!” My son looked at me and said “Is she serious right now!?” We all stopped, looked at her and said “Yes, it is strange” as we burst into uncontrollable laughter. My husband said “What’s even weirder is that I woke up this morning and decided to wear this shirt!” She laughed and said “I know!! That is so weird” without a clue in the world that we were laughing really “at her” at ourselves and at our situation. She had no recollection that we had even walked only a couple of hours earlier. This went on for the rest of the afternoon. To the point when she would start to look at her shirt and then everyone else’s my son would say “Vovo, isn’t it so weird that we are all wearing the same shirts!” Laughter was plentiful that day.
The following weekend I was awarded a special award in town, through our youth football program. I was the recipient of what has become known as “The Courage Award” named for a former coach in our program who passed away in 2007 at the age of 38 from Cancer. I posted the below on Facebook the morning after receiving the award:
“ I was stunned to have found out I was even nominated for let alone would be receiving. I was the recipient of the 2019 Keith McClanan Courage Award through North Attleboro Junior Football – being that I was the person responsible for the award this year, to have received it felt like an out of body experience. I am beyond honored and humbled. When I discovered unbeknownst to me that the BOD had nominated me for my role as a caregiver to my mom and for the work I do to raise awareness with Alzheimer’s, I was stunned, touched, surprised and
may have thought they were absolutely crazy! Ok -a little bit of all of the above. Courage is defined in so many ways and I never feel that anything I do is courageous or anything anyone else wouldn’t do for their loved one. To me it’s what I do. This is how I live my life. This is my family.This is my community. I am in some amazing company in receiving this award. People I view as truly courageous having fought battles I can’t even begin to imagine! I look at this honor in a positive way to get the message out there that Caregivers are not alone and that there is always someone to listen. I also know (for those of you that know me well) that this is only the beginning of my work with the Alzheimer’s Association. I am not going anywhere. I will continue to work with NAJF and the multiple other organizations I volunteer with as long as they will have me. So, in saying this, I thank the McClanan family for seeing me as a worthy recipient of this incredible honor, the BOD for nominating me, the recent past recipients for coming tonight and my family and friends for always shaking their heads, laughing, telling me I am crazy as I get more involved but for ultimately always supporting me and my decisions! THANK YOU ALL so very very much. I am truly grateful”
I meant every word of what I said – I don’t feel “courageous” for caring for or helping to care for her. It’s what you should do for your parents – they took care of us after-all! This award should absolutely have gone more to my Dad than to me but he is not involved in the program and therefore can’t be nominated. I made sure they were there front and center, on the field with me to receive the award however and I do look at it as “our award”. As the presentation was given she stood there smiling and listening. Every now and then she would say “Ohhhh…” or “Wow” as she heard the story about herself. I don’t know that she even realized they were talking about her. If she did realize then she is showing yet another incredible example of courage. She stood there twice in two weeks and listened to the story of herself and how difficult being a care giver can be. Something she NEVER wanted us to be for her.
This past weekend was crazy. I noticed an incredible change in her. We went to get pedicures and have lunch. Even as we were getting our feet done she kept saying “what are we doing here?” I would just point to our feet! She didn’t realize what we were having done? How is this possible? As fate would have it as we “dried” we were sitting with two women wearing Alzheimer’s Walk T shirts so I asked if they had done the walk. They said not this year – they had just lost their dad/grandfather in the fall. I expressed my sympathy and said “I understand” and motioned my eyes toward her so they would know. She said at that moment “Someone I know had Alzheimer’s! Was it my Father!?” Me “ No Mom -it was your mother” “Ahhh, that’s right!! Where is she now?!” me “She died about 10 yrs ago mom!” “Ohh- that’s right! What about my Dad? Where is he?” “He died about 30 yrs ago Mom” “Oh Wow – that long? Wow…I am an orphan I guess” …ummm…how do you respond to that?!
Sunday we had them over as it was a special day in our house. My little guy received his black belt in karate! My parents and mother-in-law were there and I made his absolute favorite meal (he’s been begging for it!) as a surprise while he was at the test (meatloaf, mashed potatoes and corn) he was thrilled. Before dinner I smelled a vapor rub smell – I figured one of the boys got into the Bio-Freeze – Nope – My oldest says “Vovo, what are you eating!?!?!” Her response “candy”…I have mentioned this before – she is now absolutely addicted to sweets!! It’s non-stop!! I said “Mom, let me see your candy!?” Out of her pocket she pulls a few cough drops that she had taken off my counter! OMG – she is now like a child that needs to be watched constantly. The scarier thing being that she really couldn’t taste that it was a cough drop but rather thought it was candy.
As we ate there was one piece of meatloaf left. I joked and said “we can’t leave that lonely piece there – someone eat it!” She cut it in half and then just started eating it off her fork! We all looked at her mortified! I said “Mom, Cut that!! You will choke” I joked that if that had been us as kids dad would have stabbed us in the elbow with his fork! At that moment he said “If I could reach her I would!” she looked at us like we were nuts and then grabbed the other piece and started to eat it the same way! It was insane. Like a child. I was so puzzled. She has always had great manners. We are still laughing about it 2 days later. The boys said last night again “Vovo ate so much – did she forget she had already eaten?” Perhaps she did. My oldest said “Mom, are you going to get it?!?” I said “Probably. Why? Will you take care of me?” to which he said “Oh yah, but I will mess with you – so much more than I mess more with Vovo and I mess with her pretty good!” I burst out laughing and said “Great – so I have that too look forward to!” Of course he laughed and said “Don’t worry mom – you won’t even know or remember I am doing it!” He has a point! Kids! LOL
It’s definitely not getting better or easier. It is most certainly the final stage. The boys often ask “how much longer will she live?” to which I respond “I don’t know guys – I don’t know.” I know that as her daughter and someone who knows how much she dreaded ever getting this horrible disease I hope it’s sooner rather than later. I don’t want to watch her get worse. I don’t want her to forget who we are. I don’t want to have to find someone else to care for her because we no longer can. I simply just don’t know. The season has changed and so has she yet again.
I feel like I am running out of things to say yet have so much to say it’s ridiculous. It’s summer, the weather is gorgeous. Time is flying by. Unlike last summer I am working this summer so I don’t have as much time to give or spend with her. It’s weird and it’s scary because I feel like every time I see her she is worse. It certainly doesn’t get easier. He’s tired and at the end of his rope but yet we all keep on keeping on.
There have been A LOT of appointments for them this summer. She is involved in so many studies – none of which have had any sort of success for her or anyone unfortunately. There are so many out there but so far nothing has even come close to a cure. I hope it happens, and I believe it will, but when? Will it be too late for my generation? I hope not but even more so for our kids? Please God – not our kids!
The biggest appointment was a few weeks back. This is the one with the memory center – The odd thing -she actually scored better on the test than she has in recent the recent past. I was beyond stunned as she is 100 times worse if you ask me. When we questioned how on God’s earth that was even possible, they explained that she is actually worse based on the observations he/I shared and they can see, but when one on one the brain has an incredible way of saying “You got this – you need to focus and do well” and at that given moment/test she was able to do OK. It really means nothing in the scheme of things because she is definitely heading to the final stage as confirmed by the doctor. It’s time to really start considering a home / alternative care for her. He won’t be able to care for her that much longer. It sounds awful, like we have given up but it will become a safety issue at some point for both of them.
She has been involved in a study now for nearly six months – one that was seemingly the most promising. I talked about it last time. It’s similar to virtual reality goggles basically and it is supposed to shake the plaque off her brain. No such luck. She would have been in a holding pattern if it worked but alas she continues to decline. I am hopeful. I think something out there will eventually work but sadly I think for her, it’s too late. We work hard. We put her in any /all studies, because you never know but this one which seemed to be the closest to hope is no longer hopeful.
Speaking of HOPE – the Hope study through Boston University is another study she is involved in as well. This is a study that will allow her brain to be donated. She was accepted and we are moving forward. More tests, more MRI’s. Her brain is more photographed than my kids and I take a lot of pictures of my kids! She has never minded being in an MRI machine -until recently. She freaked out. They had to stop. This is another sign of the changes in her. Hopefully she can continue to be a part of this all important research. We’ll see. MRI’s are frequent so if she can’t be in the machine any longer, who knows what will happen. It’s so important to us to do and give as much as we can to the research because without it there really is no hope!
So many things have changed with her. She is thin, and frail, and in a constant state of confusion. The woman that used to walk so fast that my legs which are nearly double her length could barely keep up is now way behind me. She tires easily and has not a clue in the world where we are or what we are doing. I slow down. I tease her that she is as slow as Dad now. She laughs and says “No I am not – No one can be that slow!” …but she is! If not slower. She is insecure without him and she can not be out of your sight at this point. It’s like having a toddler. A very scared, nervous toddler with separation anxiety.
One day recently she was at my house for a bit as we had been together all day and I needed to drop some things off. She started to go outside and look around. When I asked her what she was doing, she said “I think I live near here – I will just walk home now. Dad will be worried about me!” ….FYI – Nope!! Not worried about you and you are not walking home woman! Don’t get me wrong, it’s easily walk-able but not when have no freaking clue where you are going. For a split second I was tempted to say “sure – go ahead” and follow her to see where she went but that’s just my twisted humor for you. Relax – I would have followed and redirected!
We spend as much time with her as possible which is not nearly as much as I would like as we are going like one-armed paper hangers half the time. Truly an understatement saying this summer has been ridiculously over scheduled with sports, camps and life in general! The boys have started coming with me on our excursions whenever possible because they are very well aware that she is not doing well. On one recent outing, my 14 yr old (Connor) became Brian. Who’s Brian you ask? Not a clue! She called him it six times within a few hours. Is he an old boyfriend? We don’t think so. They had friends named Brian but still at a loss! My eleven year old is still Brendan – for now at least. Luckily the 14 yr old finds this hysterical and just rolls with it. Now when she calls his name he will sometimes say “I am Brian – not Connor!” Talk about confusing the crap out of her. My friends and I now refer to him as Brian as well when we are talking in reference to her! When I was growing up, I always wished I was named Susan – I hope she starts calling me Susan. That would be fun!
When I take her out I have to be careful. Constant redirection. She will talk to anyone and everyone she sees. Offering opinions on what they are buying, trying on etc. Hush woman!! She LOVES babies and little ones (especially little girls!)…CREEPILY so. She goes right in to see them. I have to say “Mom, stop!! You can’t touch people’s kids!! Don’t get in their face! You are scaring them!” I am seriously afraid that someone will call for help one day. She can’t stop. It’s crazy and it’s almost like the more you redirect the more she wants to go in. She gets mad at me and snaps at me. I want to scream out loud “I am so sorry!!! She has Alzheimer’s” so people don’t call the cops but alas I don’t want to embarrass her either! Remember – people with Alzheimer’s don’t wear signs! Oh how I wish they did.
She no longer grooms herself! Again – like a child. Has to be prompted for EVERYTHING. He has to stand there while she is in the bathroom to tell her to brush her teeth, put on deodorant, makeup etc. I picked her up earlier this summer and she was dressed for winter. I said “put on some sandals – it’s beautiful out!” As soon as she did that I looked and said “OH MY GOD WOMAN!! We are going to get you a pedicure NOW!” she fought me and said she was fine. I said “Oh hell no…now!!” I now make it a monthly outing to make sure she is has her tootsies done! EESH!! No creepy old lady feet allowed on my watch!! I noticed on that first day that she no longer shaves her legs either. She is fortunate as she doesn’t have thick long hair! It wasn’t super noticeable but I noticed because I was looking. I immediately came home and begged my husband to make sure that when it’s my turn he will make sure I am still well kept. God help me.
Her fashion sense is totally gone. I have mentioned this previously that it’s like she is color blind but now I feel like she might be blind altogether! EESH! We went somewhere a few weeks ago and when she walked out, I nearly died!! It stuns me! She was a clothing / accessory buyer her whole career. She always has been an impeccable dresser. Never even really wore jeans in her lifetime and god forbid sweats – NEVER!! Not any more! One day in particular she came out wearing white shorts with anchors all over them and a white shirt with stars all over it! Now, I am all for being patriotic but Jesus – WAY TOO MUCH going on there!! Back inside we go to change her and make her look good! I have boys -no daughter so between being shaven, pedicured, and matching clothes, I better be extra nice to my future daughter-in-law or they could make money off me in the circus! God Help me!
When we are in the car, she reads EVERYTHING. We will be driving down Rte 1…and I hear “Target, Pier One, Dick’s, Applebees”…on and on! I often times say “Congratulations Mom, you know how to read!” She laughs and says “I know, right!??” a minute later starts reading every sign she sees again. On the highway it’s the big green signs with the towns on them. At least we won’t get lost! I always know where I am because she tells me down to the mile signs, “Mile 202!” LOL
I was talking with one of my girlfriend’s daughter last week while I was at their house. She runs the local park/rec camp that B attends. She said “Your mom is so cute! Last week she came in to pick up Brendan and when the counselor saw her she said ‘Who are you here to get?’ Your mom looked at her, thought for a moment and then said ‘I honestly have no idea who I am here for!’ …I was immediately mortified!! Where was my dad? Why was he not with her!? K’s response was “Mrs. Murphy…it is FINE…Your dad was right in the car we could see him. We all know who she is and that Brendan goes with them every day!” The counselors all know that she has Alzheimer’s. I have told them and Brendan tells hysterical stories about her all the time. It is fine!! PLEASE don’t tell him to stop sending her in for him. Let her have that independence! We’ve got this” I calmed down a little as I realized she is right but yet it scares me nonetheless.
I laugh when I think about what K said “he tells hysterical stories all the time!” both boys do. Apparently so much so that I noticed at the end of the school year in C’s yearbook that one of his friends wrote “Don’t ever change and please keep telling your hysterically funny grandma stories” I looked up when I read this and said “what stories?” He looked at me as if he might be in trouble and said “Mom, Come on – Vovo is good material! I have a list of stories! I keep it in my phone and add to it every time she does something else” I said “WHAT!” to which he popped open his phone and showed me his “NOTES” …I died laughing as he re-told “his version” of many!
I often wonder to myself the effect this has on them. Am I showing them too much of life’s cruelty at young ages? After seeing this and listening to them and having K confirm B does the same thing I realized, No, in fact this is life. Good, bad, ugly and often very funny. As much as I wish we didn’t have to experience this I am grateful that they are. They see the time that is given to her and the necessity of being there to help, to laugh, and to care for her. Family dinners, shopping trips, just chilling out with them. It’s good. All good. Even when she makes C go back to back with her 100 times in one visit to see if he is taller (he’s got a good 4” on her at this point- we measured today in fact after the 7th time!) Good stuff. All good stuff – apparently I am raising comedians over here.
Grateful for our little town and our friends and their kids who all know them and know the situation and are willing to just roll with it. I constantly get texts from around town – “just saw your parents at Stop & Shop” or “saw your folks at drop off” “Your mom is sitting here at the salon having her hair done – I am few seats over”…whatever / wherever – I know people are looking out. The laughs we all have as she sits at games and says 10 times, “what color are we?! What number is Connor?” or she cheers for the wrong team just after telling her we are the red/white team NOT the blue team or another kid because “that’s Connor” My favorite is on the rare occasion when she realizes it’s him at bat and yells at me “Leslee, Connor is up -PAY ATTENTION” Yah, Thanks Mom!!…Lordy Lordy am I GRATEFUL! Cheers to the last of these lazy days of summer!
Where to begin ?! A few months ago I explained that we were going down a slippery slope. A very slippery one. Well, although the weather is changing the icy slope is not. I have been thinking a lot lately about this disease. I have cursed it more times than I think is even fair and I am sure not even close to as many times as my dad has. I have so much to say that I am afraid this is going to seem like a scattered crazy mess in the end so I will take my time and try to get out all my thoughts and make it seem like one cohesive piece! Wish me luck!
So, let’s start maybe with recent and work our way back. I will make it about me for a moment and then go back to her, although this is always about her – I had surgery last week. It was nothing “major” in the scheme of things – I had my gallbladder removed and I had a hiatal hernia repair and dissection all at the same time. No biggie, right? It was laparoscopic. I wasn’t cut open.
I’ll be fine!! Well, I am fine but I can’t explain the pain I was in for days nor can I explain the fear that I had when the rushed me back in for another procedure – they had to widen and dilate my diaphragm because I couldn’t even swallow water. I was tired, in pain, dehydrated and incredibly emotional and my mom had no clue! None! She lives .5 miles from me and sees me all the time but yet had no idea what was going on – All Week! I had to call in help from my dad the night of the initial surgery and the night of the emergency. They transported and fed the boys while I was undergoing this additional procedure and she asked EIGHT TIMES (Connor, my oldest counted) where I was while they explained each time what was happening.
On Saturday I still couldn’t drive so I had to ask him to take me grocery shopping for our pre-Mother’s Day get-together with my sister and her family as they were coming to visit, while the hubs was at work. She couldn’t understand why I couldn’t lift things or why I struggled getting in and out of the car. I had to explain to her at least 5 times what was going on. She was so sympathetic each and every time I told her which was nice but yet annoying. It was rough. I wanted her to say when I got in the car “How are you feeling honey? Is there anything I can do for you?” That clearly didn’t happen. Instead I had to just tell her over again what was going on.
Sunday was Mother’s Day and I didn’t move off my couch. I couldn’t even bring myself to go over there. I feel like a terrible person. So many friends would have killed for a Mother’s Day with their mom. To even see them for a minute! For a minute I wanted her to check on me. Call me, text me, make sure I was ok….of course this was silly. I am 47 this seems ridiculous! I don’t don’t care how old you are, sometimes a girl just needs her momma and mine is no longer here in the way I need her to be. Again, I realize I can still see her and hug her and I know she would die for me if she even had half a clue but that is the thing – she doesn’t. I know my friends that have lost their moms would argue and say I am lucky she is still here. I get that. I really really do but in some ways she truly is not. Physically is about all we have right now.
Now please don’t get me wrong – my villagers rallied!! My sister was at the hospital after the first surgery, walking me down the halls along with the hubby On our first walk, my nurse (Sarah) complimented me on my eyelashes and said “you look so pretty!” My sister looked at me and said “Wait, Did you wear/do your makeup before surgery!?” My response “Ummm…Of Course I did!!!! …What if I died on the table?! I needed them to know how my makeup should look!!” We couldn’t stop laughing. The funnier thing here is that mom would absolutely have done the same thing. I have said it before, she never used to leave the house without makeup! Now she rarely wears it! I leave without it often (if not working) but not that day! Needed to look good if I croaked!. Calls, texts, drop bys with food for the boys (I am on strict strict diet for 8-10 wks)! Protein shakes were left for me (that liquid diet!) People checking in on me constantly! The hubby was great. The boys were “ok-ish” I had more than enough attention and I don’t need a lot – especially when I am in pain but it just felt weird that my mom had / has no clue as to what happened and now to have explain and re-explain just makes it that much sadder to me. Am I being a big baby? Without a doubt, but you all know me and I am nothing if I am not honest so this really bummed me out. I am however going to survive and will move on now!
The last few weeks (this past one aside) have been rough. We took her (TT and I) to Les Miserables a few weeks ago. This was all my sister’s planning. I thought she was crazy because she is a go big or go home gal so no expense was spared and she treated us to a lovely day. I thought she was crazy simply because I knew mom would not remember it all. Why spend the money? We didn’t need to do this. She is happy now if we sit and color with her never mind a whole day out in Boston, but that’s what she wanted to do and I was to get mom there. I went over the night before and picked out her outfit for her and I picked her up at 9:30 the following morning! She asked I don’t even know how many times where we were going as we drove in and every time I said we were meeting Tarah there she was surprised “Really!? Tarah is coming too?!” Yes Mom, we are having a girls day today! “Oh how nice of you girls!”
We had a LOVELY Day- truly lovely. T and I got matching T-Shirts at the show to have to remembrance of the day and I smile every time I wear it. We had brunch, saw the show, walked around a bit. She loved it while it was happening. It was always her favorite. She used to blare the soundtrack at home while we were growing up. She took me to see it in college for the first time and I hated it because she wouldn’t stop talking, telling me what was happening as she sang embarrassingly at the top of her lungs!! I have spoken to this before that music is often the one thing that Alzheimer’s patients remember – this was true of that day. She sat there singing when different songs came on. At one point I had to shush her! As we left the show and we said goodbye to my sister I knew we also said goodbye to the memory she had of the day.
We got in the car and she asked immediately what we were doing? I said “Going home Mom! We just saw Les Miserables” Mom “Oh, we did!?” UGH!!!!!!!!!!! Yes, we did and it was great!! “Oh I am sure it was honey!” As we left the city it’s somewhat of a cluster to go north or south on 93 – you need to know where you are going or it could be problematic. Well she screamed at me 4 different times that I was going the wrong way and that we needed to go NORTH not South – What was I doing!!?!? I said “we live south Mom” She looked at me as if I were kidnapping her and said “Well, I suppose. If you say so!” It was a little unnerving. Like she didn’t feel safe with me.
As we pulled into their complex she looked me dead in the face and said “Do you want to come up and see our place? You have never seen it before.” I assured her that I would be happy to come see it and I silently burst out crying inside. I am there weekly if not more. I have seen it plenty. This is just crazy. It is what it is I guess but damn, why is she declining so quickly.
She is involved in a new study. I believe I talked about it in my last blog. She wears virtual reality goggles for one hour per day. It supposedly is shaking the plaque off her brain. We should see improvement or rather a “stand still” in symptoms. So far I am not seeing any change but it’s probably too early to tell. It is truly the most hopeful of all the studies on Alzheimer’s thus far. This has got me thinking.
I am thinking about Alzheimer’s constantly. Is this my future? I think about this new study. Wouldn’t it benefit someone that is predisposed to it, that has the gene but doesn’t have the symptoms yet to do this to see if it acts as a preventative which is what they believe it will be? How could it not? Shake away the plaque before it comes. I wasn’t able to even say it out loud for awhile – I had to text it to him “I think I am going to get tested to see if I have the gene for Alzheimer’s and so perhaps I can talk to BCM about how I can help -would they want me to be in studies?” I feel like maybe those of us with the genetics that are predisposed could be really helpful in some way. Look at our parents but watch us at the same time. Why aren’t there more people doing this? Perhaps there are and I am just unaware of it. I feel like I am up on things but I can’t be that up on things. There is only so much time in my day. Maybe it’s selfish in that maybe, just one of these studies will work and I will have been in it from the get go so I may never face this horrendous disease.
I will talk to the Memory Center about getting tested and see what they say. My sister said she would get tested as well. There is part of us that believes it is our destiny to get it with our mom and grandmother having it but it’s one thing to joke about it, it’s an entirely different thing to hear that it science says it is inevitable! I cry thinking about it but if it helps us or my boys to not get this one day then we need to do it, right!? Who knows. I need to put on my big girl pants and make some calls but I am a liar if I am say I am not terrified of hearing “you have the gene.”
So much happening. I feel like I am all over the place right now. We decided that we want to donate her brain to science. In order to do this she has to be involved in another study. I just got the text tonight that the are now enrolled in said study and it’s a go – Her brain will be donated. Some may have issue with this- not burying her “whole” not too worry she is being cremated anyway, but what greater final gift than for researchers to be able to see her brain after all this. I am sure they have others but to me she is a warrior and even after this crap is all said and done and she is gone she will still be helping to find that cure that we all so desperately want.
It’s crazy all the things we have to do and are doing. If it kills us all we will die trying to find a cure. I feel like my days are numbered with her. Much more so than they ever have been. She may live awhile but we are not far from the time where she doesn’t know us. I am rambling now. My mom has Alzheimer’s and it’s getting harder by the second – blah blah blah!
Well, I have been writing in my head for days, weeks, a long time! I am not sure where to go with this or what direction as I feel like I am in a game of pinball and I am the ball being clinked and hit and bounced off of sides. It’s been a bumpy crazy winter on the Alzheimer’s train. It’s like we are on the biggest black diamond in the world and we don’t have helmets! Hold on tight everyone it’s getting wild!
You all know Alzheimer’s is a brutal beast. No denying that. It doesn’t get easier and it sure isn’t pretty. As time wears on it strips the patient of all their dignity. We aren’t there yet but I have to wonder, how close are we? It has been three years since she got the official diagnosis. Seven or eight since we started really noticing the signs. Again, so young!! She turned 70 in October so imagine that at 62 we started to notice!! Oh my god – that is me in 13 years. Please don’t let that be me!
I am not sure if things are noticeably declining because it’s winter and she is cooped up or if it’s just the natural progression. Probably both. I see her often and I try to take her most weekends even for lunch / shopping but sadly life with a teen and a tween don’t always allow for it. I have been super busy the last couple weeks so I haven’t had time. This weekend I made the time. He needs a break DESPERATELY and I need to spend time with her. OH MY GOD! What a disaster. In the month since I spent a day with her (I have seen her weekly but not one on one!) I am not sure what happened but it’s beyond insane.
She can no longer see colors – Black / Blue – forget it (can be hard for many) but even purple she has said is pink and green is blue – If they are dark greens or black it’s always navy to her. It’s wild. For a woman that was a women’s clothing/accessory buyer for 1/2 her career this it the most fascinating thing ever. We argue in the store as I try on one color or the other and she is fighting me that it’s the opposite of what it is. Crazy! I just smile in the end and say “yup – I love navy!” …I officially have an entirely navy wardrobe FYI (not really – it’s all black!) LOL
As we shop we drive from place to place. I know I told you all how she taps constantly. Well, now it starts the second we get in the car. Before the car is even on she is tapping away. She has also always been a horrible back seat driver but with the decline it’s worse than ever. If she sees brake lights – even if they are a mile away she is using her fake brake and grabbing the arm brake above her head. As we are driving there is a car in the right lane, I am in the left. She sees the car in the right lane breaking as it is turning, now to remind you, I am in the opposite lane….she grabs the bar, hits the fake brake and screams!!!!!!!!! SCREAMS….I slam on the brake, have a small heart attack and say “WHAT!?!? Mom, WHAT!!!!???” She says “Oh, I am sorry – I thought you were going to hit that car (I wasn’t even close to it!) and I just realized it’s in the other lane. I am sorry honey!” I lost it!! I yelled at her at that point!! It’s wrong and I know it but my god she is going to get us killed!!! I said “MOM…STOP…SERIOUSLY! You are going to kill us both – not me – YOU! STOP! Please let’s just pretend today is not my first day with my license and that I actually do pay attention to the road. Jesus!!” I felt badly but not that badly as this has been my life since I was 16.5 and it’s only gotten worse with age, never mind Alzheimer’s. Noted however that she now clearly has super bad vision, zero depth perception and I am guessing can’t tell left from right! Sweet mother of god~I am not proud of myself for yelling at her but I literally thought I was about to end up in a 40 car pile up when it was NOTHING.
After this incident we went to lunch at the usual spot – Bertuccis. I try to always take her there because it’s where we go and I am hoping the familiarity will help her. She said as we were sitting there “I think I have eaten here before, maybe with you?” Yes mom, we have been here before. You like it here. She said “Yes, I think I do”…gulp! We eat and then that wraps up our afternoon – one more quick stop at the grocery store and I will drop her off. When we parked at this last spot I had to park in a different place from where I typically park. I joked that I would never remember where I parked because I was in a different spot. She said “Oh, I will remember!” I burst out laughing and said “OK, DEAL!” Of course when we came out she asked where we were parked and I said “you were going to remember!?” She said “Over there!” which of course we were – but so was every other car! Good thing I knew where we were.
When we get to their place he asks her “What did you do? Did you have a nice time? Where did you have lunch?” …To which she says “Yes, we had a nice time. Not sure what we did. Leslee, did we have lunch?” Oh boy! This is the other piece of it – She forgets that she ate so she will keep on eating. If it’s something sweet, forget about it – she will eat an entire cake in a sitting. She has always had a sweet tooth but this is nuts! Sweets are like heroin for her lately. She can’t stop. I get upset because sugar is the worst possible thing for someone with Alzheimer’s. It’s poison on her brain but she can’t / won’t stop. I tell him to stop buying it but again – it’s like she’s a junkie. She will find it. It’s the craziest thing I have ever seen.
Left from right, she doesn’t know it anymore. She knows her left hand from her right but if she is looking at a table and she is setting it she will put the forks and knives on the opposite sides of the plates. Last night she was at the house for St. Patty’s Day dinner and she likes to help of course so I always have her set the table. We hand her six plates. She goes out to set the table and says “I am short a plate” I look at my husband who says “weird, I could swear I gave her six!” He walks to the dining room and I hear him say “You have enough- Count them” she does and says “Oh, Ok…couldn’t remember how many people there were” He walks away. A few moments later I walk in and say “Ummm, Mom, What are you doing?” Her response was “setting the table but I need one more plate” I looked at her and said “Mom, Look at the plates and look at where the chairs are.” She kept looking and looking and couldn’t figure it out until I corrected it! My table has a chair at each end and two on each side -SIX…She had set the table with the heads, three on one side and one on the other. As soon as I was done fixing it she said “what else can I do the help?” I handed her cloth napkins to replace the paper ones she had folded. She struggled and then ended up putting the paper one on top of the cloth one! Oh lord, give me strength!!
As we got ready for dinner I said “Mom, would you like some Arnold Palmer?” Her favorite thing to drink, I always have it at the house! She says “Oh honey, thank you but you know I hardly drink at all anymore, not that I ever really did in the first place” It takes a second to register with me that she is talking about “alcohol” I was thinking she actually doesn’t physically drink anymore which is not good! I said “Mom, Arnold Palmer is iced tea / lemonade, no alcohol, you love it” ….”OHHHHHHH OK…I like it? If you say so, yes, I would like some then” Lord woman -the last thing I am going to give you is alcohol, although I suppose for entertainment purposes only it could make things interesting!
She is forgetful (well duh! It’s Alzheimer’s) of the normal day to day and is now starting to forget people. She has stared blankly at people that she has known for years. Names escape her. She still knows us but she can’t for the life of her place others. She keeps asking for her sister and her parents. She has referred to her grandchildren as her nephews and so on. Just tonight at my oldests birthday dinner she referred to herself as his aunt four times!
My sister came tonight as well. She left and about two minutes after I said “Did you have a nice visit with Tarah today?!” She looked at him and said “We haven’t seen Tarah in a while, have we!?” I looked at her and said “Mom, she literally just walked out the door!” She shrugged and said “Really!? Wow, that’s awful that I don’t remember!” Yes mom it is… It’s scary as Hell. I don’t know what to say when this happens so I laugh it off and say “must have not been a memorable visit!” I wait for the day when it’s me she stares blankly at. I prep for it constantly but I still know it will devastate me!
Absolutely ZERO short term memory. We laugh and thank the sweet lord my oldest is as kind hearted as he is. He is now taller than her and EVERY SINGLE TIME she comes in the house she says “Oh, Connor are you taller than me!? I think you might be! Go back to back!!” He always obliges and she is in awe that he is indeed an inch or so taller. They will immediately go face to face and it starts all over again! I can watch it 4-5 times before one of us finally says “Ok Mom!! Yes, he is taller than you!” It’s become a running joke in our house. Sometimes just for fun I will say it when he walks into a room, “Mom, I think he might be taller than you now!?” And so it begins ….LOL. Sorry, but you all know by now I have to find something funny about this!
I try to smile and remind myself that this isn’t her. My “mom” is gone. She is here in the physical sense but the mom I know and loved is a mere shell of herself. I am patient and I try to be kind. I am human so I am not always successful but I have to remind myself repeatedly this is not her fault. She definitely did not ask for this. Who would?! This is the part I struggle with. I don’t know if I should share it or not because I know myself, if it were me, I would be MORTIFIED if anyone knew this was happening to me but I am also trying to share with you ALL of our experience with Alzheimer’s – the good, the bad, the funny, the not-so-funny, and the really real shit and I do mean shit! She has become incontinent at night – not always but often enough that it is absolutely taking a toll on my dad – as if all of this isn’t anyway. We have had the “depends conversation” and none of us want to go there but it has to happen. You never know when an accident will happen, so in my mind better safe than sorry is what I say. Who wants that?! NONE of us! It’s awful and it’s only going to get worse.
I look at her and she is still so beautiful, so happy but yet so very confused. She is truly like a child. She has to be directed and redirected. She asks him constantly how long they are staying here (their new place) and when should she pack to go home? She doesn’t remember friends names as she tries to talk about them she will say to him, “what’s his / her name again?” She visits with them and can’t remember that she ever even saw them. This is hard. This sucks. She never remembers that she has done something moments after she has done it, even with me. They attended nearly all of my son’s basketball games and when he would show her the photos on Facebook from the game she would get angry and say “Why aren’t we going – there is NO reason why we don’t! I am sure he is disappointed that we never show up!” At one point I had taken a crowd photo so I sent it to him and I had circled them so she could see. Her response “Well, If you say I was there I must have been but I don’t remember!”
She is about to start a new study. She will essentially be wearing virtual reality goggles for 1 hour a day. The way it was explained is that it will “shake the plaque off her brain” so if it works, it could be a “holding pattern” for her of sorts or with any super incredible luck if it really really works she could get a touch better. I asked him the other day “do we want her holding in this state?” Neither of us do but we feel strongly that she wants to do whatever she can to help with this disease. That if it works and if it helps she wants to be one of the ones to help with that discovery. She knows (well she did way back) that she isn’t going to be cured but god willing she will help cure someone one day. This, a cure, something, anything is what we pray for every day and how we get through this slippery awful slope! I truly hope none of us crash into that tree at the bottom of the hill before all is said and done!
Alzheimer’s with a side of Cancer
Well, it’s been an interesting few weeks here for the Cammett family and I mean aside from our normally entertaining interesting! About six weeks ago I got a text that Mom needed a biopsy of a spot they found on her breast. Not too worry. It’s routine, they have had to do these before on her yada yada yada. I honestly didn’t worry. I have had crazy mammograms in the past and have had to go for further testing. Happens to me a lot actually and it’s always fine. I suppose that is good in some ways as you don’t lose sleep.
Imagine my surprise when I am sitting at my desk chatting away with my co-workers and my boss who was in town for a couple of days and I look down at my incoming text “Well, the Biopsy came back positive. They believe it to be minor, will know more later…just another thing to deal with and add to the list” I actually read it four or five times before I said out loud “ummm…Oh my God, my dad just texted me that my mom has breast cancer!”…Cue the “What!? Oh No! Do you need to leave? Go home…check on them…are they ok!?” Me “No, I think it’s fine – I really do. I’m good.” I believe I may have called my husband, maybe I texted him, I can’t remember and his response was “Are you shitting me!!?” I responded with “I know, right!??” I remember feeling strange like I was having an out of body experience. I didn’t really “react” if that makes sense. I slept fine that night and every night since. I wasn’t worried. What is wrong with me!? Am I just used to getting bad news? Am I a cold, heartless bitch that doesn’t have feelings (some may say yes!) but I felt nothing -not worried, not sick to my stomach just more “it is what it is” and I moved on and kept on going about my life.
I know that I did not talk about it in front of the boys. I was so super careful I don’t want them to know until they need to know. Everyone we know that has had cancer in close relation to them has died from it so I don’t need them to worry until there is something to worry about. I tell him that one of us should go (me or my sister) because a lot of information will be fired at them possibly and an extra set of ears is key in situations like this. He initially says “No, no…we’ll be fine!” and then he said that weekend “I really think that you should come with me, you are right! An extra set of ears would be good!” I’m on it and I will be there. My sister also said that she would like to be there so off we would go.
I remember saying “Don’t tell her!” He said “Too late!! She has been following me around like a child with separation anxiety lately so I can’t even make a phone call without her being up my ass!” Ahhh…good times!! I remember that phase of having toddlers and now apparently he has one too. I said “Oh no!!!! How did she react!?” He said “Oddly she was fine – I totally downplayed it like it’s minor and she seems to be going along with it” Now, if ANY OF YOU know my mom well you know that “MY MOM…the old healthy Joanne” Would have planned her funeral, ordered the flowers, told me what I would /should say in her eulogy and would not stop crying because she has cancer and she is absolutely going to die from this! I find her (my new mom) and her reaction so interesting and quite frankly shocking!
I would be absolutely lying to you all if I didn’t for a split second think when I received that text “Oh thank god…this will kill her faster and it will suck but at least she won’t have to suffer to the bitter end with this god awful disease anymore” …I do not, I repeat do not wish my mother dead but I also don’t wish her long drawn out death from Alzheimer’s either. It’s funny (not really) but there are far less odds of getting Cancer if you have Alzheimer’s and if you have had Cancer you are less likely to get Alzheimer’s Not to say it doesn’t happen but the likelihood is less…Whoop whoop!! Someone won the lottery and got both!!
So, we wait. I don’t mention it to many because I know that if I start telling people there will be an onslaught of questions that I frankly don’t have the answers too yet. Those that I told I prefaced with “They say it’s minor, I don’t have answers yet so I really don’t know the plan or the treatment or anything and I won’t until the 4th hopefully it’s as minor as they are saying. I have to believe that to be the case or I don’t think they would have let us wait three weeks before coming in to meet with the doctor.”
We get through Thanksgiving. It was a lovely day. Lots of laughs. She was herself (her new self!) and although slightly confused and of course repetitive she was fine. We did our usual Black Friday shopping. She wasn’t bad. Of course repetitive and by repetitive I mean within 5 seconds of the thought or question being spoken she asked it again. I made her wear a light up “fascinator” and joked it was so I wouldn’t lose her (not really a joke). She thought it was a hoot and wore it for a good part of the morning! At least I could see her flashing wherever we went! Another lovely day with her that I will remember and that she has already long forgotten.
Dad and I didn’t talk about it. It didn’t come up really until he said “We might want to get a nice family photo soon – she may lose her hair” …insert brakes screeching in my head! WHAT!? What are you talking about!? You said this is minor!?!? I didn’t think she would need chemo!?? His response “I don’t know – some do some don’t!” Oh Shit!!??!? Seriously!??!?!?!? Jesus!!! Please God…No!! What will that do to her!? As if she isn’t crazy and confused enough, chemo is bound to put her into a tailspin. It’s horrible for a reasonably (aside from having Cancer) healthy person. I can’t even imagine – I felt like I was suddenly having another out of body experience. No, this isn’t happening!? It’s enough already! Seriously ENOUGH! Now I feel sick. Now I am worried. Sweet Baby Jesus…please don’t say she needs chemo!!
Ok, so here we are 12/4…another D-Day. Off we go! I pick them up we head to Newton-Wellesley. We are to meet my sister there. The ride up – Well, she asked us SIX TIMES “where are we going? What kind of dr. am I seeing?” I cringed every single time because every single time he said “You have a very small cancerous tumor in your breast Joanne. We have to go meet with the doctor to discuss your treatment” I held my breath and waited for “MY MOM” to come out – Nope! Never…every time “oh great! (*insert sarcasm)” and that was it…and breathe! This is truly the bizarrest of the bizarre! She is so calm…way too calm. I am in awe!
We arrived right on time. All four of us pile into a teeny tiny room. The poor doctor was like “whoa…lot of you!” Which is funny because we actually have a small family! LOL. She was lovely. She said so many medical terms that I was just doing a blank stare and nodding my head, like I understood anything she is saying when it mostly sounded like a foreign language…Here is what I got “Stage ONE! (hallelujah) The tumor is 7mm anything under 20mm is great and here is a lot of wiggle room. Lumpectomy and a Lymph Node check (I want to call it an ectomy too but that’s not the right term!) and IF they get it all and it’s not in the Lymph nodes which she really doesn’t believe it is we are done! Radiation is up to us but she doesn’t necessarily think it’s necessary unless it is in the lymph nodes. I don’t either for the record, if things checks out as clearly and easily as we believe it may! If it’s in the nodes then yes, of course Radiation it is. None of the medicines will interfere with her Alzheimer’s medicines or her being involved in the studies she is involved in so good good good!! YAY!
Are we in the clear? Nope but I feel and I believe and the doctor especially did that this too shall pass. Now, if only she could have a lumpectomy to remove the Alzheimer’s we’d really be talking! So, there you have it!! All good news as far as having Alzheimer’s with a side of Cancer can be! Phew.
Well well well my friends…it’s been awhile. Summer has come and gone. The leaves have changed and we still have Alzheimer’s! Not that I thought it would be gone or anything but hey, you never know. Just like we all went out and bought lottery tickets in hopes of winning 1.6 billion- never say never!
It was an incredibly busy fall. Always is. Football. It monopolizes our lives from August 1st until mid-late October. This year we were done last weekend. I was sad and glad all at the same time. Sorry to see another / last season of youth football pass but grateful to get my life back and be able to help him out more with her! As if the fall wasn’t busy enough, they moved in the middle of all the football chaos and I started a new job so there’s that!
The move was a horror show! The movers were late, then they disappeared, then they came back late – Disaster. Throughout the process she was sooooo confused. She wasn’t helpful at all. She would pack things that were going to be thrown out, donated, left – you name it. Crazy town. I am not sure if being able to move over the course of the month was a good thing or a bad thing. I got a text one day – “she just took everything out of the closet to move it all!!!” I told her to only take out her winter clothes! I am ready to kill her!” I laughed and said “well, at least she is helping!” lol. Guessing he wasn’t amused.
As the day approached we had the Alzheimer’s Walk. Literally 3 days before the movers were scheduled to come! What a great day! Our crew was small but mighty! We raised close to $7500. Not the 10,500 of last year but we had 1/2 the team so I was proud and happy! Forever grateful to my friends for not unfriending me as I begged weekly for donations! We didn’t have a big party after – just my family and my sister’s family and my parents wonderful friend Susan who had flown in to walk with us and visit. Our next door neighbors from our years on Elizabeth Lane also made the trek to Foxboro to walk! It was so awesome to see them!! A nice day. Beautiful weather. Perfect.
Wednesday was the disaster with the movers. The last thing they needed but yet why not. Life is nothing if it’s not interesting! I texted back and forth all day with him – they were late, later, seriously 4:30pm they are arriving and JUST STARTING – No way! The text at 9:30 was the “we need to stay with you because they took our stuff” text – WHAT IN HOLY HELL!!??! Of course you can stay but do we need to put out an APB on your crap!? When they arrived, she was funny she said “This is crazy – we have moved a lot and this has never happened!!” A glimpse of her old self. True – I am not sure it’s happened to many but we will sort it in the morning. Long story short they finally are settled. Their new place is lovely and he is finally calm. Not going to lie – I was starting to question if he may be peering on the corner of it as well as he was tired, confused, incredibly repetitive. I thought -PLEASE GOD…NO…Not him too!! I can’t do it! I just can’t!! Please let it just be simple exhaustion. Thankfully I believe that God answered my prayers because he is back to himself. THANK GOD!
Like I said, I have been busy. I haven’t seen them a ton since the move. I have run over here and there and they have been at any/all football games that were doable for them (they are still only .5 miles from me – just on the other side of the school they were near before!) but I haven’t had time to really take her off his hands. I texted last week that I was free on Saturday because although football season is over, my photography business picks up right after that for holiday shoots so I am really out straight again until December. Well, Saturday there was a Nor’easter predicted so shoots were being moved. He said “AWESOME!! I need a break so badly!” I get it. Happy to take her.
I picked her up at 11:30. I made her put her rain boots on and her raincoat – neither of which were on her because she wouldn’t listen to him. I came in soaked so she could see it was no joke outside. Off we went. Six times between her place and the mall “So what’s new honey!?” Me “Nothing Mom! Not a thing”…and repeat! The last time I made stuff up! She listened intently as I told her a random story that I had told her a million times before about work but whatever. It worked.
We shopped, ate and then headed to the outlets. She did say a few times she didn’t even remember where she lived now. I finally said “Well Mom, that’s the thing – You are actually homeless and live in a box in my backyard. With all this rain it’s super soggy so I figured I would protect you and take you out today!” She thought this was super funny so that was what I told her at least seven more times. She laughed just as hard every time.
When we got to the outlets we walked passed Chicos. Not my taste but she stopped and said “OHHHHH CHICOS!!” She used to basically shop there exclusively when she was working. I said “Do you want to go in!?” She squealed like a little girl who had just seen TSwift! I took her in – she remembered that she was a size 3 in there – I said “Not anymore. No way!! You are so much smaller now Mom” we started trying things on (she did ) She is now a .5 *(bitch! LOL) and a 1 top! She is wasting away on me! She found 2 outfits that she loved. I told her I would buy them for her. Of course she fought me but it was her birthday the week before so I said “I didn’t get you anything (I truly hadn’t) so I want to get this for you! The lady there said “Oh, LET HER. I wish my daughter would buy me clothes!!” so she finally did. She was thrilled. So happy with her new duds.
As we headed home she couldn’t believe how long we had been gone. I told her “Well Dad pays me $20 an hr to keep you out so I am working it as long as possible to make as much as I can. Times are tough and Christmas is coming!” She laughed and said “Wow…that’s all!? He should pay way more! I am worth it!” I said “Absolutely mom but Dad’s cheap we know this so that’s all I am getting!” Laughs again with “He sure is” (sorry dad!) I apologize yet I know he is somewhat proud of this as he wore a “Worlds Greatest Cheapskate” pin when we were kids!
Once we got back to their place I went in to hook up their new printer. I was in the office for a good hour with him. I said “I bet she forgot I was here!” When I went out she looked a little confused but then played along and said “did you help dad!?” So maybe she remembered maybe she didn’t. I would like to think she did. As I headed out she said “Thanks for stopping by!” …and like that I realize she has probably already forgotten our afternoon together. I didn’t. More memories. Lots of laughs and grateful for the day.
Sunday I went over with a vat of soup for them. Thrilled of course to receive one less meal that he has to cook. I see her and she is wearing one of her new outfits. I said “Mom, your outfit looks great! I love it!” She says “Oh thanks. It’s not new, maybe it is! I don’t know where I got it but thanks for the compliment honey” …And like that I am reminded that we are her memory now. She is happy. That is what matters. For that I am happy too!
So, Where do I begin!? How about with “where did summer go!?!?” Then I will fill you in on the fact that I was laid off in early July and although that first day I was in a panic, after that and the hubs talking me off the ledge realized that I / We would be fine and I should in fact listen to him and take my first summer in over 30 yrs off and enjoy my boys and help my parents! As I settled into this time off I had great plans!!
The first thing I did was tell him to make some plans, take advantage of me being home! Get breaks while he could because I would hopefully be back to work by September and then I wouldn’t be around as much!! He said he would but I knew better and knew he wouldn’t because he would feel guilty. So, that being said I started to grab her here and there and take her out for a few hours at a time those first few weeks because the boys were in camps and didn’t need me. They weren’t there anyway.
I am not sure what he did in those hours off or if he just enjoyed the sweet serenity of the quiet. Who knows but all I could give was time so time is what they got. I was grateful for it actually. Even on the days when she was super tough I reminded myself that this is my memory, not hers. These are my treasured times with her and although she won’t remember moments after I drop her off she loves being with me, that I know!
One day I picked her up and he was out. He had gone for his bi-weekly (or so) coffee with his buddy, his two -three hour reprieve every few weeks that he lives for! I picked her up while he was gone. He needed to run some errands and they had to be done without her or they would never get done that she panicked! I got there and she was happy to go with me but then said “What about Dad!? Where is he!? He will worry about me!?” I said “Mom, I PROMISE you, Dad will give us a 48 hr head start before he calls the police – TRUST ME!” She laughed of course and said “Ha, probably!!” So, imagine this scenario on a loop ALL DAY LONG! Yup! All Day! I even had to text him at her request that I had her safely with me in case he was worried (haaa – he actually responded as I had been to her all day – 48hrs before he sent out the National Guard! ) Guess we know where I get my sense of humor! I showed her the texts – didn’t matter. All day long – That was her focus – “He would worry”
We survived that day and many other outings! They weren’t always easy and some days were better than others. Finally about 2 wks ago he decided it was time to take advantage of my offer to go to Newburyport to see the guys without her. He made a plan and we set the date. He was thrilled and so excited to see his friends. I was on deck. I picked her up at 9am. By 9:30 I started counting the minutes until he returned! I kept thinking – “he does this 24/7 – Suck it up!! He is a Saint! OMG…I might kill her!”
We had plans to go to my cousins. She has a pool, it was hot…very hot and we brought the boys and their friends. My mother-in-law came also and we had a great day. All day “where is dad!?” or she would explain where he was to everyone over and over again. It was a tough one. Once we got back to my house she was confused, and more so angry! “WHERE IS YOUR FATHER!?!?” …Me “Mom, we talked about this…he went to Newburyport for a Lions Club Golf Outing (little white lies …she didn’t need to know he was just lunching with friends). Mom “WHAT!? Well, WHEN WILL HE BE BACK!?!?! He should be back now!?!?” …I said Mom, “I don’t know when he will be back! He will be back or I will find him and get him here myself but for now just let him enjoy his time. We had a nice day too!” She wanted to go home – she demanded it. I explained I really needed her help! I needed her to stay at the house to watch B and that way if Dad wasn’t back by the end of football practice she would eat with us. She agreed and then imagine the loop again. She was so angry. It was as if he had abandoned her. How dare he.
He texted that he was home and had a wonderful, much needed day off, shortly before I left for football practice. I told him to take his time, she was pissed!!!! He said “Oh great!” He needed to do a few things but would be there shortly. I swear if it had been getting dark I would have sworn it was sundowners. It could well be anyway based on the time of the day. Please don’t let that be happening on top of this horrible disease. Isn’t just having Alzheimer’s enough!?! Please God. Go easy on us with this!
He texted later in the evening that she didn’t remember our day at all. He had explained it to her, showed her a photo I had sent to him of her in the pool but just simply said “Well, I must have been there if you are telling me I was. I have the memory. That’s what matters. She was floating in the pool with my mother in law – neither of them EVER go in the pool but it was just so hot! The boys had a blast. The ladies floated. We all chatted and had a lot of laughs. We even stopped for ice cream on our way home to feed these football players a snack before they got home for their meal before practice!
At the beginning of August, I was made aware of a new apartment complex that would be PERFECT for them. Brand new, income based so it could save them money as seniors that are on a fixed income. He was thrilled and super hopeful that they would get one of the remaining apartments. They went immediately over and started the process. We crossed our fingers and prayed to every God and Goddess that we might believe in in hopes that it would help!! It was a Process…a LONG CRAZY PROCESS but they got word that they were accepted last week. THANK YOU LORD!!! I could see the relief on his face and hear it in his voice. The financial savings is huge for them. Now, the games begin!!
She doesn’t understand why they have to move. She doesn’t understand why she needs to get rid of some of her things and most importantly what do you mean she can’t take her 2 beloved cats with her. She is in a tizzy like I haven’t seen in awhile! This could be painful. Very painful! She could really spiral with this move. She already is spiraling. Damn you Alzheimer’s.
Today I was there. I go back to work on Monday. It was weird. He handed me a folder and in it were a number of items. Cemetery plots (I am now the proud owner of a few plots!! Who knew!), Power of Attorney, Medical Power of Attorney, DNR’s, Funeral Wishes including their pre-written obituaries essentially!! Stop it…can we please stop it!?!? This is not shit I want to talk about…ever really! I at one point jokingly asked if they had a suicide pact set for today and should I come check on them later?! Of course a laugh but seriously – this is weirding me out! I am a realist, no doubt. I don’t expect them to live forever but beyond today would be nice! This is just a little too much. I joked that now I own plots of land I am tossing them on Ebay and I will just set them on my mantle – If I only had a mantle! They laughed but in my head I thought – this isn’t real!? I can’t be talking about this right now. I know their wishes and my family has never skirted the “real” conversations but just maybe, looking at her and seeing how frazzled and confused she is, this became my reality. One day sooner than I would like they will be gone, mostly likely her first and that day no matter how ready I am for it will be horrible! I felt nauseous.
I watched and listed as she asked, re-asked and kept repeating the same stories over and over. I could see the frustration. I thought he might lose it today! It’s stressful trying to move when your partner is completely clueless!! I blurted out without thinking, “Mom, come with me!! I have to run some errands!! Come on – let’s go!” Relief instantly over his face. “Oh, where are we going!!??” Me “just out…come on!” She came. Thank God! As soon as we got in the car “Where is Dad!??” “What is he doing?” …really!?!? Oh boy! Insert the loop!
The boys had early release because of the heat today. After we ran a few errands we picked them up and took them to lunch with us. She seemed good with them. She asked a few times what grade they were in but they answered and told her funny stories about school and what’s already happened in their whole day and a half! So this is it. Summer is over. Alzheimer’s has taken over and I am grateful for every moment I got to spend with her this summer – regardless of how insane it was!!
So, today was not a fabulous day with her. I feel like I am starting to be redundant in my posts so I apologize but I suppose it helps me to say it out loud! I shouldn’t be surprised it was a tough day – she clearly isn’t getting better nor will she. Alzheimer’s sucks. Plain and simple. Somehow though, finding a laugh through it all and sharing our experience is important! I am not working right now and I feel like I should help give him a break as often as possible as things are getting tougher every day for them. Especially for him.\
They are getting together with friends this weekend for a BBQ / Beach Day at my sisters so my sister suggested I get her a new bathing suit since she hasn’t had one in probably 20 year. She is much thinner now and besides, why not update yourself. T says she will treat but it’s my job to take her shopping this week to get her one since she obviously can’t being over an hour away and working. I will figure out some time this week – my schedule is wide open and take her!
I knew he was at the end of his rope last night as they were in an accident on their way to the Doctor (they are FINE thankfully!!) but nerve wracking nonetheless. I had them for dinner because I knew he was too upset to deal with cooking. I told him I would take her tomorrow (today). I think I could hear Hallelujah coming out of his head! I said, “I’ll be there by 10-10:30 have her ready!”
I got there at about 10:15…No sign of her! He calls to her upstairs to let her know I am there and let’s go! She is shocked to see me and she looks ready but says she needs a minute. He tells her to finish her makeup and be sure to put her earrings on. Ok!
We chat downstairs for a bit. We discuss that it’s time to start looking at places for her – not for her to go to today but soon enough and there are wait lists. We need to get on them. Ten more minutes go by. I go upstairs, “Mom, what’s up!? Are you ready!?” to which she seems startled and frazzled! She replies, “Almost! What am I getting ready for? Where are we going!?” OH BOY! I can already see how this is going to go. I notice no makeup still – UGH! “Mom, finish up – let’s get going, ok?! I need to be back in a few hours and I don’t want us to have to rush!” “Ok sweetie -I will be right down!”
Ten more minutes – Still not down!! I call up again – She comes down. Still no makeup and no earrings! Now, if you follow these blogs you know that the mom I know doesn’t leave the house without it and most certainly not without jewelry on! That’s changed. It happens more often than not now. I look at her and say “Ok, let’s go!” (I don’t care if she is wearing makeup or not – she does!) The bigger question – WHAT was she doing upstairs all that time if she wasn’t getting ready!? Some questions we will never have answers to!
As we get in the car she immediately starts tapping (I wrote about this tell-tale-heart habit she has awhile back!) – I say “Mom, please don’t tap!!” She immediately snaps at me and says “I SHOULD GET OUT NOW AND WALK HOME!!!!!!!!!” At first I am a little shocked – I was super polite and patient sounding in my request and then I am utterly amused and think, “HA!! Good luck sister, you are never going to find your way home – this could be entertaining and maybe he will give me a reward for losing her!?!” As soon as I finish my thought she is tapping again and is clearly over it, and is now asking where we are going – 14 times between their house and the mall (I counted!) Tapping and asking the whole way there!!
This ride is different though – she suddenly says “I don’t think I put on my makeup” and she pulls down the visor and looks in the mirror and says “NOPE…Crap!! and I don’t have earrings on!!!!” I mention that Dad told her to do all that and she says “He did? I don’t remember!” …Ok…not bringing that up again! She then slaps her cheeks a few times to put color in them, puts the visor up and we start again – “Where are we going!?” “I don’t think I have makeup on” – Visor Down, Face slap and repeat – AMAZING how long seven minutes can seem when this is the scene. I cursed EVERY Red light!!
We finally arrive at the mall – “What are we here for?! What do you need honey!?” Me “Nothing Mom…today is all about you! Bathing suit for your fun weekend” Then it starts “What!? I don’t need a bathing suit – I have a bathing suit – I am not spending money on a bathing suit! blah blah blah” OMG….Seriously shoot me please!!!!! I explain “Mom, you are going to the beach at T’s and you need a bathing suit – you were a size 16 last time you bought one and now you are an 8 or a 10…time for something new!! T is paying she wants to do this for you so PLEASE let’s do it!” She says “Ok, fine” and as that thought is finished REPEAT Scene! At least this time I am smart – I hold all chosen suits and as she tries one on I keep the door cracked until she hands it to me and then I hand her a new one and take the one she’s just tried!! Haaa – Small victories!! I didn’t see the same suit 5 times like it was brand new! Winning!!
We settle on the suit and I pick her out a cover up to go with it and even found some cute little cheap flip flops for the beach!! As she tries them on I see her feet…OH NO!!! “MOM….You need a pedicure!!! STAT!!! What is happening here!?!?! That’s unacceptable…we are getting your tootsies done!” And cue argument “My feet are fine, they look good, I am not spending the money….” Hush woman!! I just walked her out of the store and into the mani/pedi place and sat her down!! She didn’t argue once the massage chair took over!! I text my sister as I am half laughing, half mortified by her lack of care for herself and she says she will treat for the day! Perfect – Mom is happy and the feet police will not arrest her for having creepy old lady feet! We choose a color and she is excited because it’s similar to one that I have on and we are now twins! She of course gets upset that I am not getting a pedi also and I explain that I had mine done last week…I am good!! I tell her she has to take care of herself -we need to pamper ourselves sometimes and this is the best way to do it. She stops arguing.
We then move to lunch. Bertucci’s her favorite and the only restaurant at the mall! As we walk in she says “Wow – it’s been AGES since I have been here. The last time was probably with you!” I explain that it was only two weeks ago but small victory that she remembers she went with me. Deciding what to eat was a whole other story!! She asked 100 times (probably literally 100) what I was having, what should she have etc. Once we ordered it was the same but “what did I order!” – Chicken Parm, Mom! When it arrived (I had the cheese Menucci) mine was gross – all sauce – barely any cheese (Sorry RI Friends- I like CHEESE on my cheese pizza)! so I didn’t eat it. If she offered once she offered 100 times to split her sandwich with me. I said “I am good Mom, I am not malnourished in the least! I can certainly skip a meal!!” I think that she thought I would die of starvation today! Trust me – I could survive on an island for months with the extra I have on me but thank you for offering.
As we wrap up the day she gets in the car and says “So, here are all your things-” Me “Nope, those are yours” she starts again with the “Why do I need a bathing suit!?” OH MY GOD….I finally say “because mom you do and it’s too late – bathing suits can’t be returned so it’s all good” She then notices her toes and says “Dad is not going to be happy that I spent money on this!” I say “He’s going to be fine with it because you didn’t spend money on anything today, Tarah paid for everything so thank her when you see her Sunday” Mom “She did?! When am I seeing her? Is she coming here? “No mom…you are going there hence the bathing suit”…Oh no, did I just reopen that can of worms??! Mom, “That was nice of her? Why did she pay? How did she know what we were doing today!?” …..Oh Lord Woman!!! I answered each and every question repeatedly and as I got her home I slowed the car down and told her to tuck and roll! Kidding people…kidding!!
When I walked inside I looked at him and said “WOW…what a fun day we had!” as she followed it with “We sure did sweetie!! Thank you so much for a wonderful day!” And like that I am brought back to the reality of that is what she knows, that is what she remembers for that spilt second – a wonderful day with her daughter. Good!! That’s what matters. She has no recollection already that they were in an accident yesterday – sometimes memory loss is a thing I guess, and I am sure by this point she already forgets that we spent a few hours together today! What also matters is that it is absolutely 5 O’clock somewhere and this chick is about to pour herself a drink!
Bear with me people! I love you all and I am absolutely going to do my best to make you chuckle a little with this one but I am not writing today to be funny. I am writing because I just can’t shake the angry “Why me? Why her? Why us?” this week!! That being said I apologize in advance for the whoa is me! I’ll shut up I promise!
So, last weekend it was Memorial Day weekend. It was by all accounts great because I had one extra day to my weekend. I had fun with friends. Watched the boys play baseball (what else is new!), did a few things around the house and spent some time with the family! Great, right!?! Well….sort of!
Monday, I took her for our usual errand run and tour of the mall! She was off. Way off!! I have said before things aren’t going to get better and I am not kidding – they aren’t. So we are driving to the mall and she sees a lot of cracks in the road and says “there sure are a lot of those things!” I am driving so I am not 100% sure what she is talking about – Birds? Trees? Cars?! What?!?!?!? So she keeps repeating and pointing – I finally get it… “CRACKS!??” I say…Yup! That’s it – “I couldn’t remember what they were called!” Oh Jesus!!
Next we get to the mall! A huge plus that she didn’t suggest a 3X for me – not even once as has been her MO lately! She did ask me a gazillion times my size though. Not actually sure if it’s worse to say your size out loud or to have her suggest a size that is way too big for you and be relieved that she is wrong? Tough call! She seems slow, sluggish. I am walking at a snails pace so I decide after one store that we are going to head back. We had done a bunch of other errands before getting there so I was done.
As we get in the car we are chatting and I explain that I have my physical tomorrow and I am nervous because I know I have gained weight and I don’t want to have surgery as the doctor has suggested is an option! I am dreading the conversation as I explain to her! Mortifying – yes and those of you that know me will kindly say “that’s CRAZY” and perhaps it is but that’s the truth and that leads me to the next part of the story – As I am telling her this she says “Oh sweetie, I did that! I had that!! You should do it!” Ummm…NO YOU DIDN’T!! “Yes, Yes I did. I know I did” Me “Ok Mom, either you never ever told me or you didn’t have it!” Mom – “Well I know I did it!”….She sooooo never ever did it but whatever – I can’t argue with her. She is insisting so I just go with “Oh, well that’s cool…it’s not for me though!”
We keep driving and she says “So, how is golf for that guy?”…What guy? What is she talking about? Connor golfs (my oldest) there was a tournament on TV that day, my husband is a golf course superintendent …so many options! I say “Mom, what are you talking about?” She repeats…”golf, that guy…ugh…golf, that guy….oh you know his name (I really am not sure here as she is speaking!) …You know him….Your husband!!” Me “MURPH?” Mom “Oh right, that’s him…I couldn’t remember his name!” Sweet Baby Jesus this is insane!! I am truly having an out of body experience right now! I say “Ha…I get it -I never felt the need to introduce you 17 yrs ago so it’s all good. I try and forget him sometimes too!” She giggles but I am stunned. I have now stopped at our next destination and texted dad and explained our adventures. He says this is what’s happening lately. She can’t remember names or words and it literally happened seemingly over night! I then invite them to come over around 5 to the house for a BBQ. Of course he accepts – one less meal for him to cook and a conversation to be had because he won’t have to repeat himself all through dinner!
I dropped her off at 3:30, head home to cook and get ready. I explain to “what’s his name” the story. He laughs along with me and you know he is now referred to as “That guy” by everyone who read my FB status on Monday! The boys (Connor especially) are actually upset by this. They immediately get worried that she will forget who they are. I explain that “Yes, she might” I tell them that it’s important that they are there for her no matter what and that they remember her even when she doesn’t remember them. This is a lot for a 13 and 10 yr old to take in. They love her to death but they struggle with the memory loss and I think in part they are afraid. I get it. We all are.
5:00 rolls around and they are right on time! She sees me and immediately says “Hi Sweetie, how have you been?!! What’s new?!” Me and my smart ass mouth responds with “I’ve been great for the last hour mom, thanks! Haven’t done much since I have seen you in that time other than prep our dinner!” She looks at me and says “That’s great but I haven’t seen you in quite awhile so what else have you been doing!?” Oh God…Oh No…I say “Mom, I saw you an hour ago…we spent the afternoon together!” She looks at me and says “We did?! I don’t remember”….and there you have it…SHIT!
We had a great dinner of course. Lots of laughs and Murph of course had to bust her chops about who he was / is. She didn’t remember that she forgot who he was so it went over her head but we all got it and laughed away.
The next morning I checked my email first thing as I always do. I had sent an email to our Joanne’s Journey Team last week telling them when the walk is in hopes of getting everyone to come back this year. I got an email last week from some of their oldest and closest friends that they will be in France celebrating their 50th Anniversary – that’s awesome and wonderful and they will be missed!! On that Tuesday morning after my day with her I got another email – their other friends (they always hung out with a group of couples – the Friday Night Crew as they called themselves)! couldn’t make it either as they were going to France with the other couple! Again -Awesome!! What a great opportunity and I am jealous honestly! I’d love to go to France! This email however might have well stabbed me in the heart!! Not because I am hurt or angry with them because I adore them all!! Truly – What CRUSHED ME is that they should be going with them!! My parents should be going on this wonderful adventure with them or any adventure for that matter.
They are so young!! 69 and 73! This is their time to do these things. Travel, see the world! No commitments, why not?? Why, because of the cruelty of life they can’t! She can’t go to the mall without massive confusion, how the hell is she going to Europe? That’s the reality. It would be horrible for everyone involved. Him because he would be worried sick about her and her because she would be so confused it would make her even worse because she would be jet lagged and out of her element. It would be a living hell – worse than the one we are in now.
I just got so angry! I shouldn’t get angry. Again, I realize people have it FAR worse than us. I am appreciative of that and very aware of it but just for a moment I looked at “that guy” and I burst out crying! I said “They should be going …they should be able to travel and enjoy life with their friends the way they did when we and they were younger! They all used to travel, with friends and without – they were able to go away on weekends, for weeks, even for a day and enjoy life. They always had so much fun!
That time has clearly passed far too early for them. They are now not able to travel or have adventures although living with Alzheimer’s is it’s own adventure I suppose. They enjoy much simpler things now – a baseball game, hanging out with their grandchildren, trips to the mall that are just as quickly forgotten…Europe – not a chance in hell!
I HATE it, This sucks – Alzheimer’s SUCKS!!!!
Mother’s Day is tough. It’s a struggle for many of my amazing friends as they would give ANYTHING for one more moment, one more phone call, one more hug, one more smile – just about anything to see / be with their Moms who are sadly no longer with them. I feel so blessed to have her here still. Lucky beyond words but that doesn’t mean it’s easy. Caring and loving a mom with Alzheimer’s is something that we do – it’s now a part of her. A part of us. It’s not the elephant in the room. We don’t talk around it. We talk about it. It is what it is. We can’t change it. Believe me, we would if we could. I would also bring back all my friends moms if even for a minute but that’s not possible either.
We had a fun day. We celebrated her on Saturday with my sister and family. It rained unfortunately so our plans for a baseball game were foiled but she enjoyed just being with all of us and having a laugh and seeing her two daughters and grandkids all together. She was a little confused at times. We had a cake for my sister because her birthday is on the 15th (today actually) but we wouldn’t see her. She thought her birthday was Saturday but as she says “When you are retired, every day is just a day so you never really know what day it is!” Just one of the many nuances she uses to excuse her memory or rather lack there of.
After everyone left I posted some photos and smiled at the fact that she seemed “OK” that day. A little quiet – she is getting quieter in a big group but one on one she won’t stop talking. I think that is because she gets confused and can’t follow the conversations any longer. I noticed that she even commented on the photos I posted something she never does and then I got a text from him. It was a little later in the evening- She was super confused about the day. It was a haze and she already had forgotten that we were with her! I quickly realized that it was him that posted “GREAT DAY” as he goes in and checks out what’s happening in the FB world with her account. UGH…Not that I am surprised but I guess I always hope that she will just for one day remember that we had a nice day with her. I told him I would text in the morning so we could all go out to breakfast.
Sunday morning arrived and we made arrangements to meet at 8:30 for breakfast. They arrived and she was so confused. She didn’t realize it was Mother’s Day – she thought it was a nice treat that we were all meeting for breakfast. I mean, it was but there was also a reason. We ordered- she got French toast. Interesting choice for her – she never usually gets that but whatever. She asked at least 5 times while waiting if we had ordered and what she had ordered! Every time we answered she said “oh, I did!?” When it arrived I watched as she ate it…it was weird. No syrup, just covered it in butter and ate it with her hands like a taco. I said “mom, syrup?” She asked why – I said “well, because it’s French toast and you always put syrup on it!” she looked puzzled and said “OH…No, I’m fine” When I said “Do you want to cut it up!” She said “No, I am fine!” WHAT IN HOLY HELL is happening right now!!? I looked at my dad and he looked mortified. He was always a stickler for manners – remember a few blogs back – he used to stab us with a fork in the elbow if our elbows were on the table!? He didn’t know what to make of it. I think even my boys were puzzled!! This is new- he confirmed it later that was something he has not seen yet! It’s always something! Every day a new thing. A challenge. What will it be tomorrow!?
I had bought her a gift (an orchid plant) that I forgot to bring (runs in the family LOL!) so I said I’d stop by with it soon as we were leaving. As I left for their house the boys jumped in the car and said they were coming too. I explained I had to go to Kohl’s and was going to take Vovo to at least give Papa an hour off since we were going to be gone the rest of the day to see my in-laws. They insisted. Ok but BEHAVE at Kohl’s…not dealing with you two crazies running through the racks and causing a ruckus…it’s Mother’s Day…BEHAVE! They assure me they will so off we go. What have I just gotten myself into I wonder! Two boys and my Alzheimer’s riddled mother – I am clearly insane right now.
When we get there it was as if she hadn’t seen us 20 mins before. She asked what the plant was for and my little one said “Vovo…it’s your Mother’s Day Present!!” To which she said “Oh, I didn’t even know it was Mother’s Day!” Oh lord! Off we go and as we are driving my oldest sees a split level entry – he is well aware of the story that every time she sees one now she points it out and say “Look, a split! Just like our old house that you grew up in” – like I somehow forgot! She does the same to my father – he is ready to blow them all up!! He says “Oh, Vovo…look at that house isn’t that called a split!?- I like it” and so the story begins!! I immediately stare him down in the mirror and he is holding back the tears of laughter!! From that point on – EVERY. SINGLE. ONE the rest of the way there and the whole way home! “There is a split” – “Boys, that’s the kind of house your mom grew up in in Newburyport” ….Thanks boys!! They find themselves to be hysterical! Honestly I do too. I know they are just trying to make me laugh which it did.
As I dropped her off I thought – She’s still here. You still have her. You are lucky. Then I thought is this the last one? I know she will physically be here in a year (unless something horrible happens) but the Alzheimer’s wont take her that quickly but it’s quickly taking her mind. Faster and faster sadly. Will SHE be here- will she know us. She is already struggling with remembering names / people from her past – forget those that she meets now…she will never remember. She struggles with completing thoughts – full sentences sometimes…Will she know me, that she is my mom, their grandmother and that we are celebrating her next year – Time will tell. Happy Mother’s Day Mom. I love you.
Wow! So hard to believe that two years have gone by since we got her diagnosis. In some ways it feels like yesterday and in others it feels like it’s been a decade. Maybe because we saw signs for close to that pre-diagnosis or maybe it’s because we have been living with it for that long – who knows! Regardless, time flies and it stops for no one. It also isn’t kind to the Alzheimer’s Patient, not kind at all.
We had a big appointment with doctors this past week at the Memory Center. We all went. The four us, like the Gestapo, we piled in guns a blazing ready to rumble. Ok, maybe not but that sounds cooler. We were definitely ready though. We had notes. His were hand written, ours were mental. It never gets easier talking about her like she isn’t there. She wasn’t physically in the room with us as she was off testing. I always feel like I am being disloyal by talking, telling them the good the bad and the ugly. It’s unfortunate but there isn’t a ton of good lately.
Things seem to be taking a turn and a dramatic one.
What have we noticed most recently – Well, let’s see…She nearly burned their house down about 3 weeks ago. She makes microwaveable meals for lunch, has for years. I know I know – they are awful for you but at this point she enjoys them so let the woman have some peace. She nukes them and eats. Well, on this particular day she forgot how long to nuke it for! She put it in for 13 mins vs. 3! Ummm…that’s bad. Very bad!
Thankfully he was home. Thankfully the fire alarm went off and he bolted downstairs to a kitchen filled with black smoke and he quickly opened the microwave before it caught fire. Unnerving!?? Slightly! She explained that they changed the directions, it wasn’t her fault. As she pointed she was pointing to the conventional oven directions NOT the microwave ones!! Insert all sorts of expletives. He admits he wasn’t kind in that moment. It’s not easy and I am sure he was down right terrified filled with “what ifs!?…what if he wasn’t home? What if he hadn’t gotten downstairs fast enough?” so many things could have gone so much worse. Thankfully they didn’t but now we unplug the microwave! I guess she no longer makes her own lunch! One more shred of independence gone.
Did I mention that she also forgot how to make a sandwich?! He had to guide her through that a few days prior to this incident! How do you forget how to make a sandwich!? She has been doing this for probably 60+ yrs. Two slices of bread, slap some meat on there, maybe a little cheese and a condiment – good to go, Right!? Not so much! She couldn’t remember what she was doing or how to do it! Sweet Jesus!
The thing with Alzheimer’s that people most often notice is the lack of short term memory, the repetitiveness. I would say hers is gone for the most part. You know it’s getting much worse when long term goes. Hers is going quickly. We explain all this to the doctor as she listen’s intently. She is concerned of course for her safety but also for his sanity. She strongly suggests it’s time for help. He needs a break and she can see that. It’s showing. We keep telling him to look into different things and I have presented some options, none are overly thrilling but there are some. I have to say that unfortunately our town does not offer a whole lot for Alzheimer’s patients. She needs people that understand her and she needs things she will enjoy, not just a senior center. These things are not readily available. We are given some phone numbers and contacts through the Alzheimer’s Association so we’ll see. This is a work in progress.
At the conclusion of the appointment it is confirmed that she has declined 9 points. Not sure what that means but she is declining. It’s slower than someone who is “untreated” with the disease but nonetheless she is still declining. None of this is at all a surprise. This time unlike the first initial diagnosis there are no tears we just listen and move on almost as if it’s a relief that we aren’t crazy thinking she is getting worse when she isn’t. We know she won’t get better. We know that this will suck more and more every day but for now she is still “ok.” I suggest to the Dr. and she agrees that she dips and we get used to that “new norm” I have spoken about in the past and then it levels a bit so it doesn’t seem so bad but when she dips next it’s significantly noticeable! That’s what it will be like now. Big Dip – Steady – Bid Dip – Steady! YAY! Buckle up kids, it’s about to get bumpy or perhaps bumpier!
There are so many little signs…she isn’t always applying her makeup fully. That’s huge. I talked about this awhile ago when I first noticed. She NEVER would have left the house without it on. I used to think she’d go down in a fire before she would walk out of the house without it on! Now it’s like she does half her face and forget the rest and doesn’t know or care. She needs reminders to change her clothes because she has worn her current ones for a few days. She can’t be told of future plans because she will keep him up all night worried that he will forget or she is confused and needs clarification on what is going to happen and the best part which can be funny and scary – she is now mixing up my childhood with her own!
Sunday we had them for dinner as we often do but this week they came and as my boys sat with elbows on the table (fyi – my dad used to jab us with his fork in the elbow as kids if we did this!…I know I know ABUSE!! Call 9-11 but I turned out fine so whatever!) The boys know this story and I swear they do it to see if “Papa will jab them” which he would not! She sees this and says “Boys, do you know that when I was your age if I did that my father would jab me with a fork right in the elbow until I moved my elbows from the table!?” I immediately look up, look at him and then her and say “Oh my god Mom, REALLY!?? VouVou Did that!?!? That is horrible!!! What kind of father would ever do that to his child? How incredibly cruel (as I am laughing through this!)” He is silently chuckling to himself. Her response “I know! But good table manners were always important to him” At this point I am crying laughing and say “WOW, thank God Dad never did that to us!! I can’t even imagine!” Whole table is laughing as is she, but she for a different reason – She because she thinks how funny it is now to think of this story of her dad but us because we know it was in fact not her dad – it was mine, her husband!! Ahhh, good times!!!
As they are getting ready to leave she thanks me for dinner and he also tells me “Mom loved the beef stew you brought over last night!” I look at him and he explains, “yes, Mom told Lori (my amazing cousin) that you brought the stew over for us and how you do this all the time, cook for us!” (now in fairness I do cook for them frequently, but not all the time!) and in this instance it’s particularly funny because I had in fact offered to make the stew for fear his would not be good and I didn’t want Lori to be hungry. He politely declined, he wanted to do it. He also apparently hates peas and I put peas in mine -who knew! LOL. So I look at her and I say “You are very welcome mom! Happy to do it! Aren’t I a great kid!??” She says “You are honey. I love you!” I follow with, “I am such a great kid that when I made it I didn’t even put peas in it because I know Dad hates them, so nice of me, right!?” She says “that’s right!” We are DYING. He can’t even breathe he’s laughing so hard!!
Just as they are leaving she sees some Minion glasses that my son got as a Valentine from a classmate on the counter. She puts them on and thinks she is just the funniest. She does look pretty funny. She tells him to try them on too and he won’t. She tells him he’s no fun and says “Take a picture of us!” so I oblige! She was happy as could be laughing away, and for those few moments she was my mom. We have moments still and I treasure each and every one of them. I know they are fleeting but we had a lot of laughs on Sunday and for that even if they were unknowingly at her expense I am grateful as we all know, this will not get easier, only worse and less with each passing day.
There are 5 stages to an Alzheimer’s Diagnosis – some say 7. The BCM and the ALZ Association says 5 so let’s go with that. What is Stage 4? “Moderate Alzheimer’s” is typically the longest stage and can last for many years. As the disease progresses, the person with Alzheimer’s will require a greater level of care.” I won’t bore you with the rest of the definition, it’s long but I will tell you this, She is absolutely without question Stage 4…but we are starting to think she is end Stage 4 teetering on 5 if she isn’t there already? She very well might be! Stage 5 is “SEVERE” and it’s truly the beginning of the end. I try to grasp that and I think I do and then I know I haven’t. To hear those words to know she is there may crush me. Are you ever ready to hear that you parent is nearing the end of their life, no matter how horrible that life will become?
So, things are not getting better, nor did we expect that they would. Not our first rodeo, remember my grandmother had it! We are waiting, watching and knowing what’s coming! I know my mom. This is the best time of year for me to be helpful, to spend time with her. Sports are still happening but they are less than the commitments of baseball and football season so I have a lot more free time. I am finally able to really give some help that I know he so desperately needs. I remind myself every week, the chores will always be there, the house will be cleaned eventually, but she will not always be here so take her out, give him a break. Enjoy these moments with her even when she will not remember, you will!!
Last week, like I have for most of the recent past, I saw them at the early basketball games and said “Oh, Mom…let’s go shopping and to lunch today! I will pick you around 12” She looked at him and said, “Do we have plans?” of course he said “NOPE! GO!!!!” I knew he was thrilled because he needs the break. I would too if I were with her 24/7. Prior to me picking her up he texted me “GOOD LUCK…she has been AWFUL the last few days – TOTALLY out of it!! Ahh, the Big A…Happy Trails!” …Awesome, Thanks!! Can’t wait to pick her up!
Off I go, totally psyched now!! LOL! We are heading to Mansfield Crossing first for lunch at Bertucci’s and a trip to Kohl’s – I have 30% off it’s a must, can’t let that go to waste!! The first things she says is “This is so nice, we never spend the day together!” …oh crap! I guess the last week didn’t count or all the weeks before that, that’s cool!
The ENTIRE ride there (I lost count) “oh look, there’s our old house” (we had a split level growing up and we don’t see them often anymore but there is a neighborhood full on this road!) …every single time!! “There’s a split!” “Oh Look, our old house…” “Yes, Mom it sure is!” and then “where are we going?” Me, “We are going to lunch and Kohls” followed by her, “Thank God you are driving, I would never find my way on these roads” At one point I had to joke with her and say “that’s why I am on them…I am going to let you out soon and see if you can find your way back and if not, oh well!! Nice knowing ya!” She of course would laugh and say “Nice knowing you because I know I’d never find my way! Dad will have some peace so he’d be happy!” That made me laugh but sad of course because she is right and although he of course doesn’t wish her gone I am sure there are moments that he does – he wouldn’t human if he didn’t! This is hard…very hard!!
We get to Bertucci’s, now mind you this is our go to- we eat there every Saturday just about. Granted, it’s the one at the mall that we typically go to but they are all the same. They are all almost identical as are most chains! We sit, and she looks around and says “This is nice!! What restaurant is this? I don’t think Dad and I have ever been to one of these”…GULP…oh dear! “Mom, it’s Bertucci’s we eat here a lot and I know you and Dad have too!” Mom “Oh, I don’t remember but it’s nice, what restaurant is it!? I will tell dad we should come here” …Oh Lord, it’s going to be a LONG afternoon.
We get through lunch with the above conversation going on, around and around again. I smile, I remind her 100 times what she ordered and once again when it arrives. She no longer has concepts of money so I always pay. She reminds me of my grandmother – she always tries to hand me $5 to cover her share! My grandmother always gave the same! Typically that will cover the tip so I let her leave her $5 because she gets very upset if I don’t take her money, but she thinks she just bought me lunch – maybe in 1950!? Off to Kohl’s!
She always LOVED to shop. She still does I think or she at least enjoys getting out and about and tooling around with me. She doesn’t look for things for herself anymore though which is odd because until a few months ago she would always pick things for herself, not necessarily to buy but to show me and say “what do you think!?” Now she doesn’t even look. She follows me and we look for me or the kids. She was a huge help picking out ties for my husband a few weeks ago. Still has that sense of what works and what doesn’t! It’s amazing!
She sees things for me that she likes, she starts grabbing them…Size 3X…OH. MY. GOD….Mom, seriously please!!!! This happened once before and I went home in tears. She asks my size repeatedly and I answer every time. Now, I am definitely heavier than I have been however I am not at 3X status yet. I am a OX or a 1X if I am being honest…Everything was a 3X no matter how many times I explained that I wasn’t that size!! I wanted to run screaming out of the store!! STOP JUST STOP!!! My husband tried to calm me down when I got home saying “she doesn’t grasp sizes anymore hun”…I looked at him and said “ummm…really!?!? So then why go right for the biggest one!?” To which he had no response. Exactly my point!
After Kohls I am not sure why but I felt brave enough to take her to the Mall. That’s about 25 mins in the car. OH LORDY!! Insert the initial conversation of our trip to Mansfield and tack on 10 mins! By the time we got to the mall I am not sure what I have just done and am considering jumping off the 3rd floor of the garage but in we go! We shop around. I have to return a couple of things and we walk around a bit. The whole time she keeps grabbing that 3X and insisting that I should try it on!! Seriously….SHOOT ME PLEASE!!! After awhile I take her home. I am exhausted. I sit and I think about the afternoon – it’s been about 4 1/2 hrs. I think of the things she said and the questions she asked. I text him, “does she even remember that we went out?” His response “no, not really!” A little piece of my heart just broke but it makes sense.
He told me a few days before this outing that she couldn’t make a sandwich! A Sandwich!! He had to stand there with her and walk her through it! What!?!? She has been making sandwiches her whole life. How could she forget that! I guess if she forgets that then of course she won’t remember that we just spent the afternoon together.
I often wonder what it must be like in her brain. I think sometimes when I am having conversations with my friends I will often say “Stop me if I told you this already or Have I already told you this?” Does she ever sit there and think “Hmmm…Have I already said this?” Is she messing with us to see how patient we can be? Does she really not know she is doing it? Of course the answer is, she absolutely doesn’t know but sometimes I have to wonder because damn woman, it never stops. She asks the question and the second it’s answered she asks it again!! To be inside that brain would be fascinating and terrifying all at the same time.
I am not sure what the next steps are. I know with each time I see her I see a little less of her, even her eyes look different. There is a little more “blankness” if you will to them. Even if it’s teeny tiny bit or a different mannerism…something…it’s constantly changing. I said to someone not too long ago that I feel like she is great for awhile and then she declines and we get used to that “new normal” for a while so it doesn’t seem as bad and then the next slip comes so we re-adjust and wonder. The fact of the matter is, our new normal is always a worse normal than the normal before. She has a big appointment coming up. They will tell us where she is at and what we can start to expect I think. I can’t be there but I hope to be conferenced in. None of it like any of the other appointments before will be a surprise yet for some reason it always is. Alzheimer’s still sucks, that is never changing. The only thing that does change is the patients themselves while their caregivers and loved ones try to find that “new normal” which isn’t really
normal at all.
Well, I have felt a blog coming for awhile but it’s been the holidays – Who has had time to do anything more than shop, wrap, cook, clean, run around like a crazed loon, and repeat for that month between the Turkey and St. Nick!!! From Thanksgiving until Christmas was a blur…it’s New Years Day and it’s still a blur. In fact, I am not entirely convinced that the holidays have even really happened yet. Have they? There is no tree or gifts polluting my living room any longer so maybe it was all just a dream. A crazy, hectic dream.
Thanksgiving could be a story in itself but it’s not a whole lot different to last years story so I will give you one month in one blog – Buckle up kids, it’s a long one! This year we went to my sister’s to see her new home and celebrate with her and her in-laws for Thanksgiving. It was truly a lovely day. Mom seemed to be doing well. Of course, repetitive and confused but she had a great time and my brother -in-laws family is aware of our situation so they were wonderful with her. We all just did a lot of over the head eye rolls and knowing glances. Driving home she asked at least 20 times what time we were going shopping tomorrow. I had considered not taking her because last year was soooo wearing on me but she remembers our tradition so how could I not take her? As soon as she realized it was Thanksgiving her question was “We are going shopping tomorrow, right!!??” There will be a year when she won’t remember it or wont be able to go and then I suppose I will go alone or maybe I won’t go at all. Time will tell. I told her 20 + times – 6:00am! My husband told her, my boys told her and he told her…that was her fixation. What time would we leave!?
Black Friday she was of course ready – her fixation this year was not so much what to get the grand kids (only a little!) but instead, my sister’s new home. If I heard it once I heard it a million times “Her house is so beautiful!” “What a pretty house” “It’s too bad you can’t have a nice house like that – I wish you could” Ummm…yah, thanks…me too mom!! Aside from that it was a fine day. Tiring with the questions of “where are we?” “what should I get the boys” and the other fixation “why don’t you just leave everything at my house and I can wrap it all!” “Yes mom, you will wrap it all for me but I have to sort it first! I promise I will do that and I promise I will have you wrap – TRUST ME!” She has always loved to wrap and truth be told she is a life-saver wrapping all the “Santa” gifts BUT I have to be very sure that I have them clearly sorted and one child’s goes at a time with their specific santa wrap. Once one child’s is done I bring over the others. Otherwise it’s a complete CLUSTER!!
As the weeks passed I finally got everything together and sorted. I brought it over and said “Here is B’s…wrap some of these gifts together (books etc) because there was a lot. He grabbed some painters tape to tape things together so she would know what to wrap together. A day or so later I got a text that they were all wrapped and how crazy it was watching her! She kept wrapping everything with the painters tape on it – LOL! Oh well!! Apparently he had to “gently unwrap” to remove the tape and then “re-wrap” so as to not upset her when she wasn’t looking. I truly didn’t care about the tape but he was worried the boys (the youngest is the only believer) would recognize the tape and all would be found out and he absolutely did not want that falling on them to have ruined it!
Next son’s gifts over – wrapped and we are ready!! Ahhh- now we coast through. There are only a few days left until the big day! What can go wrong!? We are good to go! Ha – Famous last words!!! On the 22nd my stove died!!! When I say died I should explain that this included the fire department coming to my house, neighbors I didn’t know I had poking their head out to check and see what was going on and the kind fire captain telling me “DO NOT EVER USE THAT STOVE AGAIN!” Great…I host Christmas Eve and Christmas morning…fabulous!! Now what!!?? Chinese? I had already bought everything to cook earlier that day. Ugh!!
Well, I have no choice…I have to go to their house to cook it all! I pack it all up the next morning after the hubs and I went out and bought our new stove that couldn’t be installed until AFTER Christmas!! I thought there would be no way I could do it. It’s two days before Christmas, I am stressed to the max and now I have to cook with her breathing over my shoulder!! OMG! What did I do in a past life to deserve this!?? This is going to be a LONG afternoon!! I get there and as I suspected she immediately is on me. What can I do?! How can I help?? What do you need me to do!? ….BREATHE!!! Ok…chill Leslee…you can be a bitch and snap at her or you can give her jobs to do and pray to God she can do them!
Here we go – I had her cut up all the peppers / onions for the sausage, peppers, onions. She asked a few times how I wanted them cut. I explained sliced please. She did it all. Only once did I see her starting to dice the onion and I gently reminded her that I needed them sliced. She sliced away and was chatty and a joy. Then I had made all the meatball mix and was starting with the sauce. She was done with the slicing and asked what was next? “Meatballs mom! Can you make the meatballs?” Mom “of course I can honey, is this a good size?” as she molded the meatballs. “Yes mom, Perfect!” She stood there and made god knows how many meatballs as I did all the other things I needed to do while keeping a gentle eye on her. She kept saying “This is so much fun! I am so glad we are spending the afternoon together! How fun! I love this! I never thought I’d be cooking with you all day but this is great!” …You know what, I actually agree. We had a great time. A lot of laughs and she was truly and incredible help. I was so grateful for that afternoon. An afternoon that I truly went at with fear and stress turned out to a memory that I know she will not hold for long but one that I will keep for as long as I have mine. She was just my mom for those few hours. We were just a mother/daughter getting ready to serve our family for the holidays! I am truly grateful, it was one of the best Christmas gifts I could have received – that and the new stove of course! I have dubbed it the “crockpot Christmas.” I am sure it’s one we will laugh about for years to come!
Later that same evening we went to friends who we have known since I was a child (our parents were friends!) and have since reconnected with as an adult (that’s a story for another day!) but since reconnecting we have gotten together the last 5-6 years on the 23rd or so with our parents/kids. We always have a blast. We usually play a game. This year it was a card game “Screw your neighbor!” Every time it got to her “Do I want it high or low”…we all explained over and over and God bless her she made it to the final two – I however was also part of the final two and took the prize!! My 3 trumped her 2! So in the end I screwed my mom! Lots and lots of laughs!!
Christmas Eve and Christmas Day were just fine. She loved being with all her grandchildren as my sister and brother-in-law came with their daughter so we were all together. She was confused. She did ask the kids a few times what Santa had brought when he hadn’t come yet but she enjoyed herself and that’s what mattered. She helped me wash all my new dishes (I wanted a new set -it was time after 14 yrs with the ones I got for our wedding!) She kept saying “I love these, they are so pretty!” Finally my husband said “How about stunning…they are stunning” and she said “they really are!” we laughed and every time it went back around again he chimed in with a different word. She laughed each time and said “Yes, stunning or exquisite or whatever word he chose!” He would just wink at me and keep going with her. We have to have fun with it! Why not, it was Christmas!
On the 26th I took her out for most of the day. When she asked where we were going I explained the mall (yes, I know – I am nuts!) but I had to do some returns and I am a sucker for a bargain. As we were going there she said “I don’t know if I have ever been to this mall before” …Uh-oh!!! “Mom, we go to this mall all the time!” She looked me and said “Oh, Ok…I don’t remember it, are you sure!? I don’t think I have been before!” I am sure Mom- we come here a lot. You will remember it when you get there. I am not sure if she did or she didn’t and I never asked. I couldn’t! She never let on that she didn’t know where we were so I have to believe she remembered it. It was a nice day. She seemed quiet but I figured she was just tired from the holidays over the last few days. It was more socializing than she had done in quite some time. It wasn’t until later that evening when I got a text from him asking how she was. I said “she seemed fine” (as fine as someone with Alzheimer’s can seem – her “normal” if you will) his response “Ok. She doesn’t remember going with you today or what you did!” ….GULP. Ohhhh dear! Insert a few pieces of my heart breaking!
Today is New Years Day! It’s a new year and I heard the other night that you should eat pork on New Years Day for luck and who couldn’t use a little luck as we ring in a new year! I went out and bought all the fixins for a great meal. I invited them over. They were thrilled. She raved about my new stove! (it’s the little things)! Then as we ate she must have said 10 times “This is DELICIOUS Les!” “This is so good!” “What a fantastic meal!” My husband looked up at me and said during a lull “Wow, this is so good!” and she followed suit agreeing with him which of course made us all laugh! And who doesn’t like to be repeatedly praised! I’ll take it! Looks like the pork is already bringing me some luck! 
I know that she will not get any better in 2018 – We all know it’s only getting worse but my hope for 2018 is that she still remembers us, she still can laugh at us and herself, and she still has fun making fun of herself and this horrendous disease. I still hate you Alzheimer’s but I am grateful that I had glimpses of my “old” mom throughout the holidays. After all that is the true magic of Christmas.
Happy New Year everyone – may you and yours have a happy healthy 2018!
MUSICAL MEMORIES
Last night my boys and I were scrolling through Facebook videos. And they saw a few videos that I had posted of who they thought was John Denver. A few years ago I went to a John Denver Impersonator with some friends- Why some of you may ask?? Well, growing up my mom was OBSESSED with John Denver, and obsessed might be putting it mildly. I explained this to them and they laughed because they said “Oh, she still loves John Denver!” Really, I said? I hadn’t given him a thought in years.
When I tell you she was obsessed I really mean it! We had photos of her and him on the fridge. She met him numerous times back stage at his shows. There was never anything on the 8-Tracks but him, a 12×18 (at least) poster of her and him on our family room wall, and let’s not forget that our dog was in fact named ….DENVER. She LOVED herself some John Denver. It’s what we knew. I knew every word to every song he ever sang probably before I even knew how to have a conversation, no lie!
My boys immediately stopped at these videos and my youngest especially started singing the songs I had posted clips of. He knew all the words, knew who sang them and proceeded to say “I love John Denver!” I said “HOW do you even know who he is!?” He explained that he listens to him whenever he is with Vovo and Papa! I giggled. Haa…some things never change!!
It got me thinking so I asked, “Does Vovo still sing the songs with you?” He said “Yes, sometimes she does” I laughed again to myself – she sang them non-stop for my entire young life of course she still sings them.
There have been many studies done on music and Alzheimer’s patients. She even participated in a few. Music triggers memories. Think about it, if you hear a particular song you immediately are taken back to something. I can’t hear Billy Joel, “These are the Days to Remember” without thinking of prom or our Senior Week or Roxanne without thinking of many college parties and drinking every time Sting said “ROXANNE!” So much so that if I have a drink in hand now 25 years later I still get to the urge to drink every time I hear it …so many memories. This study is similar. Songs would be played and they would ask if they remember it and usually the patient if so would remember the song but also a memory associated with it.
John Denver brings back so many memories for me! So many!! I remember singing in the car with her. I remember singing and dancing in the house with her. I remember parties – tons of parties where I could hear them singing at the top of their lungs from downstairs while I tried to bury my head under a pillow and sleep! I remember when he died crashing his plane into Monterey Bay it was as if the world ended and she cried and cried and cried some more. She was glued to the TV for weeks, she listened to his music – essentially she held vigil. It was creepy honestly. I recall making fun of her at the time…Damn I was an obnoxious early twenty-something. What’s strange is that I just googled his death and it was 20 years ago this October. Crazy – time Flies.
At my wedding I chose to dance to “Sunshine on My Shoulders” with my dad. The song was a surprise – I didn’t tell her or him what we were going to dance to until it started. Of course as soon as it started I looked over and I saw her crying her eyes out, surrounded by her friends. I have a beautiful picture of all of them swaying back and forth with tears coming down their faces as we danced. Now that I think about it were they still mourning his death or was it the beauty of my father / daughter dance!? I guess we’ll never know so I will believe it was our dance! LOL.
Tonight I had to pick the little guy up after practice over at their house. As we drove to get him my oldest said…”Let’s listen to John Denver!” Ok…he chose a couple songs and we sang as we drove to get his brother. He kept saying “How do I know these songs mom, I feel like I know them all!!?” Truth be told I had the Greatest Hits CD and I listened to it constantly while I was pregnant for some reason! When he was born he would be super quiet in the car if I played it and then eventually learned every word to “Thank God I’m a Country Boy” much to my husbands dismay! I didn’t tell him this but it was interesting to see that he suddenly was singing all the words without even knowing how he knew them.
Once we were all back in the car Brendan saw the picture on my phone of John Denver as I hadn’t shut it down. He said “PLEASE can we listen to Country Roads” We did and we sang it at the top of our lungs. As we stopped at a light I looked out the window and wiped tears away so they wouldn’t see me. I was thinking – “I wonder if she remembers doing this with us (my sister and I) when we were young – probably about the same ages 9 and 12!
As we were turning on our street they said “One more mom!!” It’s late -8:45 and I need them to shower and get to bed. We pull in and Rocky Mountain High started playing. I stopped the car and they said “Mom, we can just sing this one song and go in!” I didn’t argue! We sat and sang the song and I giggled a bit because of course my 12 yr old knows what “High” means and every time he sang that word he winked at me and chuckled a bit.
When we came inside they said “Can we listen to more tomorrow!?” Yes boys, yes we can and the next time we have Vovo in the car we will listen some more. I hope she sings with us and I hope she remembers every word!
I don’t know where to begin – I have sat down to write this over and over and over again and have done it just as many times in my head. I have been so emotional over the last week but especially the last few days it’s really hard to put everything into words but alas I am sitting here again and will do my best.
So yesterday was the Alzheimer’s Walk! The day we had been waiting for was finally here. We first decided to walk about two months ago. I had no idea what it was really all about, if we would even make a difference or if anyone would even do it with us or support us. He emailed me and said “should we do it?” I had to think about it as sports monopolize our lives and make sure we didn’t have a game because those can’t be missed. Once I confirmed that in fact we were clear I said, “Sure, why not! Let’s do it!” My sister was on board so here we are – Walking!
We created a team name – Joanne’s Journey. Works, right? It is her journey and we are on it with her. I created the website / donation page and away we went. I started incessantly harassing my friends through Facebook posts. I am sure no one is happier than they are that this walk is OVER! Haaa…little do they know I can still harass them technically until the end of October – that is when the donations stop being counted! Chances are though for their sake and the sake of my maintaining my friendships I will leave it be.
We set goals. My personal one was initially $500 and our team one was $1500 I believe. It’s hard to remember (no pun intended!) because we changed it so many times. We blew the first one out of the water in what felt like seconds. We kept changing, increasing and every time – more and more donations came in! What is happening!?? HOW is this possible!?!? How are we kicking such serious ass with these donations without much more than a simple Facebook post! This is really starting to blow my mind!! Every day he would text me “holy crap” “another Donation” “who is this person?” “wow” and every day it felt like I was increasing our goals.
We made up team shirts and gathered ourselves a team. Twenty-Five of us!? Again “WHAT!?!?!” Family, Friends (mine and my sisters), their best friends from “home” (Newburyport where we grew up!) and their lifelong friends from Hanover – This truly meant the world to us because as I have mentioned previously Alzheimer’s is so isolating…friends stop calling, visiting, checking in etc so it warmed my heart more than they will ever know to see them all here in one place rallying for her – for us -to kill this beast!!
Walk day was quickly approaching! A party was planned for after the walk at their house. Food was ordered. Party items were purchased. The house was getting cleaned and in tip top shape! We were ready, or were we!?
The week before a few things were tossed at us that we were able to work through. C suddenly had practice at the exact time of the walk! WHAT!? This can’t be happening – He doesn’t miss practice for ANYTHING! I was torn. What to do what to do! I spoke to his coaches (whom I have known for years now!) and they said “HE GOES TO THE WALK!! NO QUESTION!” I told them he worried about play time and I was assured that was not an issue and in fact they’d bench him if he didn’t go to the walk and showed up at practice!! Ok- decision made and I am truly grateful! We needed more shirts after we’d placed our order – CRAP! Yet again the Alzheimer’s Gods were smiling and my T-Shirt connection was able to deliver them Friday night! Phew! We picked our meeting spot and we were now ready!!
Thursday night we checked in at the “early” registration! When we arrived they asked her what our team name was!? She replied simply -“I don’t know, I can’t remember!” I looked at her and said “REALLY!? You can’t!? No kidding – If you could, we wouldn’t be doing this walk!” …everyone looked at me (uh-oh did I just offend!??!) and as she started to laugh they became uncontrollable! Phew Crisis averted. As we walked out it hit me the magnitude of what we were doing and accomplishing! I handed in donations that had been given to me at the fields, and mailed to me…my friends handed in the same…our total was going higher and higher. Holy Crap.
Friday was tough. Every time I saw a donation being made I cried. I started looking at the list of donors and I cried. I wanted to email everyone personally but I couldn’t. I spoke with friends about how insanely generous everyone was- some people I barely know! They explained that this really does affect everyone in one way or another so of course they are donating! I am not sure why I am so surprised but yet I am! Surprised, grateful, overwhelmed, you name it and I have felt it over the last few days especially! Yes of course I created a THANK YOU email from the ALZ Site but was it personal enough? I wanted to hug each and every person. I couldn’t believe it. I texted him and said “I think we may actually hit 10K!?!?” He said “No way!” I said “Yes, I think we might!”
Saturday morning we were ready!! We had on our shirts, we had our flowers, we had our meeting spots, GAME ON! I got texts, emails, private messages all morning wishing us well! How awesome is that!? One by one the crew arrived. We were all in. There were photos taken, laughter was everywhere, and the ceremony was about to start. As it started I looked around…SO MANY FLOWERS…Yellow (for care givers), Orange (for people that just care and want to fight this!) Purple (for someone you’ve lost!) and lastly Blue (for the Alzheimer’s patient) …a beautiful garden was formed. People held their flowers up proudly and as I looked around tears started flowing. C looked at me and said “Mom, are you going to cry!?” Normally when the 12 year old asks this I say “No, No way!” (I have to be cool ya know!?) I looked at him and said “Yes, Yes I am!” He watched me (although he is a tween he’s a sensitive one at times and he definitely doesn’t like to see me cry!) I quickly wiped the tears and we were off!
As we started walking I noticed the garden was mostly full but tons of people were still carrying their flowers! It was beautiful. Then I looked up and saw C holding my mom’s hand as they walked. I cried again and I am so grateful to my friends for capturing the moment that I couldn’t because I was crying. As we walked some of the team decided to do the 2.5 miles and some could only do the 2. We had earned a photo along the walk route…There it was – It was beautiful and it was simple and I nearly cried again! My sister was with my mom and said that she (mom) was so thrilled that she took a photo with it and as people walked by she said to them “I am Joanne” …typical Mom. I wish I’d seen that!
A good time was had by all – and we finished! It was so hot by the way (I forgot to mention that it was disgusting out!) So once we were done we loaded up the cars and headed out to party! Back at their house it was a sight to be seen. It was a reminder of the “Friday night crew” (as they called themselves when we were teenagers)! hanging out, laughing just like they did as they rotated houses on Friday nights. I walked into this scenario a million times over as a kid! Damn, it felt great to see it again now at 46.
As things were winding down I mustered up the courage to say “Who handed in donations today!? I absolutely don’t care if you did or not but if you did – How much!?” The tally sheet was there – I started scribbling and writing. HOLY CRAP – We did it!!!!!! We raised $10,000 for something that I truly believe in, that WE truly believe in. I don’t know how we did it but I cried again later!
What a day – what a beautiful day. She was so happy. She had her friends, her family and a little bit of hope that we did something really really good and that maybe, just maybe one day there will be a cure for this wretched disease! Maybe Mom!! Maybe!!
As I walked out of the house last night I thought – hey, if we can do 10k this year – how does $15K sound for next!? Sorry friends…I am not going away! XO
So, we are doing the Walk to End Alzheimer’s. I am excited about it. It should be a great day. We will be surrounded by friends and family. We are having party after with all those that walk with us! We are raising money for a cause that is clearly near and dear to us. The walk begins & ends at my favorite place – GILLETTE STADIUM, home of my beloved Patriots. What could be better!??
When you sign up for the walk you need a team captain. That happens to be me. Not because I necessarily felt the need to be it, it just happened because I registered the team. No biggie. As a result of this I was asked a number of questions, one being would I be willing to tell / share our story. Of course I would. Why wouldn’t I? I filled out questionnaires, responded to numerous emails and a couple of phone calls and then I received one asking if I would be ok with being interviewed by our local newspaper. Sure, why not!?
The interview was set up for Tuesday night. The reporter I have met previously for another article that she did on me for something else regarding working moms that are sports moms so I was very comfortable with her coming to talk with us. She wanted to meet me and mom, dad too! I suggested we do it at their place so mom was comfortable and it was quiet – no crazy tweens running around like maniacs! I spoke with her (reporter) before the interview as I suddenly panicked that morning thinking how are we going to pull this off!?? Sometimes mom will talk about it, sometimes she wont. Sometimes she is defensive, sometimes not. OH DEAR! What have I done!!??
When I spoke with her I explained that this could happen. Mom could get agitated, frustrated, have no idea that we are even talking to her about HER Alzheimer’s. She understood. I forwarded her all my blogs to that point so she could get a feeling, an understanding of where we were and what we are dealing with. That’s helpful but even then we are day by day and what would today bring? She explained that if we felt Mom was getting upset we could just give her a sign and we would wrap it up and she/I could finish later on the side. PERFECT.
I got to the house about 10 mins before the reporter and the photographer. I talked to her about what was about to happen. She seemed ok. Comfortable. She knew we were going to talk about her having Alzheimer’s and us doing the walk. I told her they want to know what it’s like living with Alzheimer’s. Her response…”I Don’t Know- I can’t Remember!!” as she burst out laughing! This may just go ok! Praise the Lord!
The moment arrived – the knock at the door. Ready or not here we go! Once the introductions were out of the way, we sat at the table and chatted. The conversation flowed. Questions were asked like “How did we know? What sort of signs did we see? When did we see them? What’s it like now? What made us decide to walk?” All very good questions. He and I did most of the talking. I explained that we started noticing the signs about five years ago unfortunately. She came to care for the boys for a month and it was painfully obvious that something was going horribly wrong! Mom just nodded throughout and said “wow…that’s terrible! I can’t believe I did that – I got lost with the boys!?” …”Yes mom, you did but it’s all good and you are fine and no worries!!” I was totally freaked out at the time but now there are days I wish with a tween and a 9 yr old that perhaps they’d stayed lost a little longer if you catch my drift. The photographer snapped away as we spoke casually at the table – I hope he got me looking thin! …that’s important you know!
He answered a lot of technical questions. Talked about her diagnosis, what it means, what we can expect. He talked about the research they are doing and the study she is involved in. Lots of questions were asked about that. Mom was very engaged. She was talking about how the girls at BCM love when she comes because she always brings them bags of her jewelry and they swipe it right up. She kept telling the photographer that she too was a newspaper photographer way back in the day and that’s where I get my love of photography from. She repeated that over and over. She made jokes every now and then and would look at me or him and say “who are you?” Everyone laughed. They were wonderful with her, truly! I know they could see the repetitiveness and they didn’t skip a beat.
We explained that we are in a strange place because there are not a lot of services for her. She is still aware. She isn’t clueless. She doesn’t need “homecare” or a “babysitter” but yet we are afraid to leave her for too too long. This puzzled her as she said “Why? I am fine!” Yes Mom, you are – we just worry you may need something. “What could I need that I couldn’t so myself!?” …Well let’s just say we don’t want you cooking anything, we’ll start there! She laughed and said “I don’t cook anyway – that’s his job so no worries there!” Touche!
She spoke of the study and her desire to really help future generations. She has about 7 months to go in her current study. We are all fairly sure she is on the placebo. It keeps coming up and being asked if we should consider taking her out of the study for that reason. She / We are adamant that NO she shouldn’t. Not too mention that the legalities around being in the study are so extensive I believe she would have to die to get out of it or if she did get out if it she would never be eligible for another – a scarlet letter would be next to her name for sure! She feels strongly that if she is on it (the drug), it’s not working so that is something or if she isn’t that she will get the real drug in 7 months so it’s ok and maybe then it will get better. Nothing will cure her and she admits that she realizes this.
She was clear that she knows she will not get better that this will ultimately only get worse. She knows it’s possible that one day she may not know who we are and she said of course she hopes that doesn’t happen but if it doesn’t it doesn’t matter because she won’t remember anyway so “Oh Well!” as she laughed! She spoke bravely about her mom and now how this is happening to her and that her biggest fear is not for herself but me, my sister, her grandsons. She doesn’t want to have us go through this. That is her biggest fixation. She does not want it to happen to us so she will try anything to prevent it.
As we talked we laughed and laughed and told funny stories about things that have happened. Things that she has done. Things that we expect that she will do. We talked about my grandmother and what it was like caring for her too. I remembered that I used to go there every night after work before she moved to Ohio to live with them and toward the end shortly before the move she was so mean that I would make my cousin meet me there because she would never be mean to me in front of her! We laughed hard at Vovo’s “Portuguese Attitude” which on my life I am starting to see come out in her sometimes! It’s a look or a stare and it sends shivers down my spine when it happens!…damn she was mean sometimes. I loved her beyond measure but there were days – LOOK OUT. You definitely didn’t want to cross her. Funny now- not then!
This went on for about an hour. Back and forth – stories, explanations, definitions. It was fun. It was light, yet it wasn’t. It’s not easy to talk about yourself and the fact that one day this will ultimately get the best of you. We took a few “posed photos” at the end which looked nice (if they came out and I look skinny! ) – maybe I will see if I can get one and frame it as a remembrance of a fun “lighter” time when things aren’t so light!
At the very end she said something very poignant. She said “I am fine. I am not dying. I don’t have cancer. I don’t have pain. I simply don’t remember things. I’m ok. It could be a lot worse!” You know what – she is right!
HELP IS ON THE WAY –(8/14/17)
Where to begin – I haven’t written in a while because I have been so busy with life and also not really sure what to say! Nothing I have witnessed lately is overly entertaining or funny and I like to keep it light and I like to laugh. Don’t we all!? Things are not fabulous right now. It’s been a long, crazy, hectic few months. Spring and summer are quickly becoming a blur. This time of year is especially busy for my family so I haven’t had a lot of time to think. Maybe that’s good and maybe that is bad. Thinking sometimes scares you and you over think and really, who needs to do that?
She isn’t doing well. In the spring the doctors were ready to say but wouldn’t quite say it “Next Phase.” Instead they have seen her more frequently done more tests and will continue to do so. They have a huge day of testing coming up on August 17 th , my birthday. Not that it matters – when you are turning 46 who cares really but it’s not exactly the present I want, to hear that my mom is one step closer to really not remembering me, my children, my dad, my sister, her friends. That’s something I could wait a day or two on thanks. It is inevitable so it doesn’t matter truly what day they confirm what we have known for months but it sucks regardless.
Spring/ Summer Baseball season was tough. They LOVE coming to the boys games and the boys love having them there to cheer them on. I know he loves going just to get out of the house and to see them play but it’s becoming less and less enjoyable for him as well as it is so hard to sit there with her. She knows baseball – my grandparents watched it religiously so she gets it! She knows the rules and will often question the ref’s calls. This isn’t pleasant. Not that we disagree necessarily that it was a bad call BUT we also know that you need to bite your tongue in the stands and just accept it. She calls out kids with questions like; “Why is that kid playing that position!?” “Oh My God…RUN!” “What’s the matter with him!?” “What a terrible play” “I can’t believe he missed that!” ….MOM, STOP!!!!! Please stop. PLEASE be quiet. She looks at us and will sometimes giggle and say “sorry” but other times defend her stance! Who would have thought that those same feelings of being mortified by your parents as a teenager could back so easily as a mid-forty-something! SO, to all those parents whose children my mother has insulted over the spring/summer seasons and will continue to offend going forward – SO SO SO SORRY!! Sorrier than you will ever know for so many reasons.
We went to Cooperstown this summer. It was a true highlight for our family. My oldest son played. It was unbelievable! Before we left we shared the channel / link you could watch the games from at home. He watched every game!! She tried. She couldn’t understand and asked so many questions that he couldn’t take it anymore. He started watching them without her knowing so he could watch in peace. I can’t say as I blame him but I am so sad that she didn’t get to experience this with us! When we returned she didn’t remember we were gone and at dinner that first night I truly think she asked my son fifty times if he had fun and if he loved it. He responded sweetly every time, “Yes Vovo, it was AWESOME!”
Growing up I always thought my parents would be the cool grandparents. They would live nearby. They would come to everything. The kids would spend a ton of time with them and they would relish every moment with them and vice versa. That’s not how it worked out initially. They lived in Ohio until November of 2015. Her declining health finally brought them back here. I think part of me hoped that being back here and seeing them all the time and participating in their lives would help. I think I thought maybe we could make her better. Why aren’t we making her better?! Why is she getting worse? This isn’t how it was supposed to go! I knew it wouldn’t be “easy” but I definitely know I didn’t expect it to be this difficult this fast.
It’s summer now and I rely heavily on them for help with the kids, well, him. She isn’t much help aside from giving hugs and snuggles to the boys, her memory is gone – short term that is. She panics frequently. She wakes him up in the middle of the night to be sure that he knows what is going on. He re-assures her that he has the schedule down. He knows where the boys need to be the next day and all week long. She tells him he really needs to write it down so he doesn’t forget!! HAAA!! Now that is funny!! He hasn’t forgotten yet. He tells her to go back to sleep and she does, but it’s not a guarantee that she won’t wake him up two hours later and repeat the whole scenario. UGH! I can’t imagine – I need my sleep. When my husband snores and it wakes me I want to kill him. If he woke me to check the next day’s schedule I may actually murder him.
There have been some funny things – she has come to the house and has used things and we can’t find them after she leaves. We have found them in the oddest places – towels in the “junk drawer” – you all know the drawer I am talking about every house has one! The can opener in the cabinet because isn’t that where everyone keeps it!? The times that she has said “Oh, I can’t remember” and we say “No way!? Really!?!” We try to keep our sense of humor. I am not going to lie, it’s getting tougher. Every day it gets tougher.
The night of his birthday in July, we had a free night for a change. I went over there and cooked a feast. It was lovely to have a night off from the chaos and have a real meal, not on the fly. We did presents, cake, birthday stuff! It was fun. I had to leave at 8:00 for a football meeting but that was enough time to celebrate right! After we left, cake still on the table she says “why were they here!?” His response “ummm…my birthday!” “Ohhh….Right!!!” she said! Now I get it, she’s forgetful but they have been together nearly 50 years. I would think that date would be embedded in her long term memory, but alas for the short term, she didn’t remember what day it was!
We decided to do and are looking forward to doing the Alzheimer’s Walk in September! I am truly excited and overwhelmed by the generosity of my friends and family. We all are. He excitedly texts me every time his phone dings with a new donation! We are killing it! As of Friday, our team jumped to 4 th place out of 132 teams with the help of all these amazing people. Our team name is Joanne’s Journey. I like it. He chose it. It’s true. It’s her journey. I am on it with her. We all are but she is truly traveling it as much as we are traveling it with her this is hers and hers alone. We don’t know what she thinks or feels. Is she scared? I hope not. I hope half the time she has no clue what’s going on at this point and is just living in her happy little bubble. I know she gets flashes of reality and knows that she has the “A” word but she forgets just as quickly. Thank God for that. With any luck we and all the other teams walking will help aide in a cure for this horrendous and I do mean horrendous disease so that our nightmare doesn’t continue to become other families as well. Today and every day I am grateful to my village. Especially as things haven’t been “awesome” lately!
A few things became very real recently. I said to him a few weeks ago, “You know the time will come that we will have to put her in a home. How do we know when that is?” His response “honestly it’s up to me. I could technically do it today I suppose” Wait….insert screeching brakes in my head….WHAT!?! Now, I know he wouldn’t. None of us are ready for that but if it happened that he felt he could not handle it anymore that’s the reality. If something happens to him, that’s my reality. I work full-time, so does my husband. We have two young boys that are super crazy busy with a gazillion activities and I volunteer every free minute I have away, something I learned from them! They always volunteered …FOR EVERYTHING! I learned from the best. NO WAY could I care for her. She can’t be alone for hours on end. She is good probably still for a few but even now with that we are starting to worry. How is this possible? When did it come to this? When did this strong beautiful woman that cared for me, raised and loved me come to a point at 68 …SIXTY EIGHT that she may not be able to left alone much longer. She is still gorgeous. Still dresses impeccably, still has her face done up perfect, she is lovely!
Friday it happened, he came over to grab his 9-yr old partner in crime and said “Are you going to see your sister this weekend?!” I said “I think so” He said “Ok, can you two maybe try and figure something out to help me, PLEASE? I can’t do it anymore! I need a break! Perhaps you could alternate and do a day each weekend? Something…ANYTHING but I can’t keep going like this I am exhausted” I immediately felt sick to my stomach. Part of it guilt because I haven’t been able to help the way I would like to. Part of it fear that it’s getting THAT bad and part of just devastation that I know he can’t leave her alone for more than a couple hours and he doesn’t even like doing that so he has no freedom. He’s chained to this disease.
No respite in site. I immediately started researching and looking for options. What can we do? How can we help? I hate to bring in an outside source but I have to. Private Pay, Insurance!? What do we do…the research has begun. I am fortunate as I have knowledge of this stuff because of research and my previous position for a home care agency. Thank God I have that knowledge. Without it all of this would be even more overwhelming. No decisions have been made but I can’t lose both my parents. I am already losing one. Hang in there. Help is coming!!
The more things change, the more they stay the same…. (4/25/17)
It’s interesting; I posted a photo today from my Facebook memories. It’s one of my grandmother (Vovo), my mom, and Connor (my oldest son) today. Today my grandmother would have been 97! Amazing to me to think what would it have been like to have her still here. Unfortunately the sad reality is; she too was taken by Alzheimer’s eight years ago. She passed away having met both my boys and for that I am forever grateful but she never “knew them.” She was “better” when Connor was born but she couldn’t remember he was a boy or his name or that he was mine but she still knew me!
I know when she met my youngest she thought he was me. She looked at him and looked at him with that longing blankness that patients often get in the end. She knew she knew him but HOW did she know him? She kept saying “she’s so beautiful.” Well, she was a he and he is my mini; especially when he was a baby. My sister, moments after his birth informed me I’d given birth to a clone of myself that’s how much he looked like me. I knew she thought he was me even though I was sitting there besides her holding him. She didn’t know the 35 year old me but she remembered the baby me. We lost her about six months after that visit. I wasn’t sad when she passed because I had lost my grandmother because I had lost her years before. I was sad that she went the way she went. I hated that she didn’t know who she was or who anyone was for that matter. I hated Alzheimer’s then and I hate it now.
Less than 2 years after she passed we started noticing “signs” with my mom. At first I would think it was impossible because she was so young. She was 62 when it started to be really noticeable and here we are with her at 68 having been diagnosed a year ago. My grandmother was in her mid-late 70’s when she was diagnosed. My mom was young, way too young. I talk about it with my boys a lot. I have explained it to them, they get it. They understand that my Vovo had it and so does their Vovo and I warn them that I could too. They are hysterically funny about it. They tell me not to worry that they will just lock me away somewhere but it’s ok because I won’t remember I am locked away any way; Touché boys, touché.
Last week they helped me during school break for a few hours. I bought movie tickets so that he could have a few hours reprieve. She LOVES the movies – my little guy gets that from her. He would watch movies all day and night and so would she so I figured, Power Rangers – he is dying to see it, she won’t remember it, and I’d rather poke my eyes out than go to it! Everyone wins!! I was right – she’s already forgotten it but B loved it, C napped through it – ah to be 12, I was spared and he got about three hours to himself!
I asked them how their day was with her. They nailed it. They had it down. They sound just like her. They told the story over and over and played off each other to make it even funnier. I was laughing hysterically along with them as they told their story. My favorite was when in the middle of the movie she leaned over and said to B “what movie is this any way!!??” He laughed and told her and then told her again when she asked after that! They adore her. She adores them! They love spending time with her. They, unlike me can handle much longer stays with her.
This weekend we were invited out with friends at the last minute so I asked my dad if they would watch the boys overnight to which he happily said yes! I think it’s a nice break for him to have them around to “play” with her! She is after-all a kid at heart! On Sunday morning when I picked them up and asked them if they had fun they told me they had a great time. They said that they were playing Hide and Seek with her!! What!?!? My husband I laughed and said “Did she forget to look for you!??!” They both burst out laughing and said “Nope” but they said a few times they think she forgot what she was doing and sometimes it took a REALLY LONG TIME for her to find them, so they would jump out and re-focus her. I can only imagine the chaos that must have been going on. They loved it though and they had a great time so that’s all that really matters.
People ask why / how I can leave them with her. Well, I can because she is my mother and she is still “ok enough” and my children are older. I am fortunate. Connor is 12 and knows that god forbid something happen he can call 911. My dad is most always there but if he weren’t they are OK. So is she and she loves having them around! She still knows them. She knows me. That doesn’t mean we don’t like to mess with her on occasion!
A few weeks back Connor and I walked over to their place on a gorgeous evening to take her for a walk. Something I beg them to do daily just to get her blood flowing. As we were walking she kept making fun of him saying “If your father were with us we would never be this far!! He walks so slooooowwww!” Every time she said this I would stop and say “He is with us mom, he’s just a block over still!” She’d stop start looking for him and then say “Really!??!” of course we would burst out laughing and say “really?!?!” After a laugh a few minutes later we could do it again.
She is getting worse. I am positive of this. Tests have confirmed it but how much worse? I don’t know- they don’t know. They aren’t fully ready to say she is in the next phase yet so “phew” but is she really in the next phase? Probably.
Those of you that know her know how lovely she is. She never ever leaves the house without her hair done or her makeup perfect. She is always dressed beautifully. ALWAYS. This is one of the good things. Cognitively she is perfect still, or is she? Last week was Easter. They stopped by to drop off candy for the boys on Saturday. I looked at her and looked at her and was in awe. She had not a stich of makeup on and no product in her hair! Forty-Six years I have known her – NEVER does she leave the house without it. Not even at 5am on black Friday! I have to wake her up at 4:45 so she can “ready herself” to shop because you never know who you might run into! Ummm…I don’t give a rat’s ass who I run into at 5:00am! They are getting me makeup free, hair in a ponytail or a baseball cap! They are lucky to see me is how I look at it! Haaa!! I finally said “Mom, no makeup today?!” She flipped!! “What are you talking about!!??! Of course I have makeup on!” she then looked at him and me and I said “No you don’t” she was furious with him for letting her leave the house like that because “you never know who she will see!”
Vanity is still present! In his defense as it would be in my own husbands, he probably didn’t even notice! I did though and I truly wanted to run and hide! Is this it? Is this the beginning of the end! Something as simple as makeup being the downfall of it all?
What will it be like when she doesn’t know me? I don’t know. I really don’t know. I prepare for it in my head constantly. I tell myself I will be ok with it, that it will happen so get ready but am I really ready? Are we that close to it happening? I don’t know. I never thought my grandmother wouldn’t recognize me or know me and one day it happened. I remember my mom crying as she explained to me that she was so sorry and she can’t believe that she didn’t remember me. I was 36. It was ok. I was ok! Will I be now at 46? What about my boys? Will they be ok? I try to prepare us all constantly, but are you ever really prepared!?
Ten years ago we were dealing with all these “what ifs” and so much has changed since then. My boys continue to grow and flourish, technology, there weren’t even smart phones then, people have come and gone from my life, jobs have changed, life offers new joys and new challenges every day, they were caring for her mom and now here we are caring for her. We are still dealing with Alzheimer’s. That hasn’t changed.
Tap…..Tap….Tap (3/12/17)Well, It hasn’t been too long since my last note but yesterday was interesting so I figured why not share. As I was chatting with a friend from HS today and telling her the story she said “this is the next chapter” and as I sat here today thinking about it, she’s right.
Yesterday was a road trip for me and her! We were off to celebrate my beautiful cousin’s bridal shower. It was an all-day affair as the shower was 1 ½ hours from us up in NH. We’ve known about it of course for quite some time so he was out of his mind excited for a day to himself!!! I can’t blame him, a whole day to have no one talking to him, repeating, tapping, a dream come true!!! I picked her up at 9:30 and we were on our way. I’m not sure but I think I may have seen him give her a gentle shove out the door as he gave me a huge smile and wave!
Off we went. The trip started with her now normal question, “So do you still love your new job honey!?” Me, “Yes mom, it’s great!” followed by “Oh, that’s so wonderful. I am just thrilled for you!”…silence, and repeat! As we get going I notice she is tapping her finger nails on the door arm rest. Oh goody!! We keep driving; she keeps talking, never stopping the tapping. Fun! We are about half way there and I have a sweet migraine. The day is looking up!
We arrive at the shower without my breaking her fingers and screaming at the top of my lungs! Success!! The shower was lovely and my amazing cousin knowing I had been in the car with her for an hour and a half brought me immediately to the bar! God I love my family!! The day was already looking up! We enjoyed our visit. I made sure to sit on a different side of the room as she was happily chatting away with another of our older cousins and they were having a lovely time, absolutely perfect!
As we head home the headache starts to return. We head out; stop for gas and I pound some Advil. She is still a mom and says “what’s wrong honey!?” I respond quickly with, “Nothing, just a headache.” She says (in her most sympathetic mom voice! “oh no, you poor baby!! Do you want me to drive!??” I immediately burst out laughing and said “haaaaa, oh my god NO, but thank you!!” We start on our way…Tap….Tap…Tap…Her “what a lovely day, she got beautiful things didn’t she!?!” Me, “Yes, it was a beautiful day and yes, she got some great things!” Tap…Tap…Tap and repeat conversation and insert with a few variations of “So you love your new job, huh!?” Oh my god, please just stop talking! What is wrong with silence…silence is golden; isn’t that how the saying goes?! I am really about to lose my ever loving mind.
About half way home I started to squirm a bit because I was trying not scream. “Honey, what’s wrong!?!” Me “Nothing, just my head is pounding!!” Her “Ohhhh No…pull over, let me drive!” Me (after thinking for a split second she’d probably kill us but at least we’d both be out of our misery) “I’m fine, no worries, thank you!” The more silent she was the more she tapped. I turned the radio up. She kept tapping. Seriously woman!!!! Tap…Tap…Tap. It was the tell-tale-heart for 90 minutes. I thought for sure I would either have a nervous breakdown or break her fingers, not sure which would have been less painful!!
We pull up and she invites me in. I didn’t flinch “No thanks I have to get home to the boys!” She laughed at my quick response and said “Well ok then, thanks for driving!! What a lovely day!! She really got beautiful things!” Yes, yes, yes now get out of the car!! No worries fellow readers, I didn’t say that out loud!! I pull in my driveway but had seriously considered stopping at the liquor store for the biggest bottle of wine I could find. When I walked in all three boys were sitting on the couch with a “How was it!?” I looked at them, burst out laughing and started tapping on the wall and said “Three hours of this!!!!! How was your day!?” They all laughed and said “better than yours apparently!”
Just as we decided to head to dinner I got a text from him. “How was your day!?” I responded with “good thing I am not a big drinker because I’d be HAMMERED right now if I was! The TAPPING…OH.MY.GOD!!!” and the banter went back and forth! He reminded me that he mentioned the tapping to the Dr. at the memory center when we were there a few weeks ago and that she explained it was all part of it. She doesn’t even know she’s doing it. It’s almost like a nervous tick. We laughed about there being no beat to it just tap…tap…tap! It is what it is. It’s our very own tell-tale-heart. Edgar Allen Poe has nothing on her!
It truly was a lovely day, and she really did get lovely things. I may have to suggest we rent her out for the wedding, no band needed! Tap…tap…tap! That margarita at dinner never tasted so good!
The A Word One Year Later (2/15/16)
One year, it seems like a lifetime ago yet it’s been nearly 365 days. Perhaps that’s because we have been living with it for about 6 years already. Alzheimer’s it’s the word that they said in March of 2016 and here we are still standing. Should we celebrate!? Throw a party? How do you honor the anniversary of losing your mind officially!? We have survived but are we surviving?
Today we went to the Memory Center. I went this time because it was important for us to sit with the doctor and tell her our observations over the last few months. There have been many and we were fully prepared for her to say “She’s entering the moderate phase” or were we!? As they scurried her off to do more tests they brought he and I into meet with the doctor, whom I truly respect and appreciate. She asked how we were doing and more importantly how was she doing?
So it began…the talking behind her back. Telling it like it is. It’s not easy, especially lately. It downright sucks actually. Her short term memory is essentially shot. She can’t remember something that happened two minutes ago and even scarier; her long-term is becoming scattered and inconsistent as well. Give me some examples she says. My response, “How much time have you got!!?” We laughed and started to give some examples of the short term loss. One example, mind you, we gave her tons! Last night at C’s basketball game we were talking about movies. She has been dying to see “Manchester By The Sea” she tells everyone as they are discussing it. I turn and say “You saw it!!” Her “Oh, I did!?” Me “Yup!” She looks at him and said “We did? Did we like it!?” He says “Yes, WE did!” He is still her voice, always her voice now. Another instance, two weeks ago on one of our Saturday outings at the mall on our way (2 miles or so from their house) she asked at least 10 times on a loop, “where are we going!? I don’t think I have ever been to this mall!” Now, granted they have only lived here a year BUT I have lived here thirteen and we ALWAYS shop. It’s our thing. She has been to this mall 100x’s and that is not an exaggeration!! Throughout the doctor was diligently taking notes, asking questions that we answer quickly and easily.
Long term examples – This one horrified me!! They were watching a documentary which included the assassination attempt on President Ronald Reagan; she could not for the life of her remember that Ronald Reagan was the president! He was a movie star. He had a movie star wife. He was most certainly NOT the president of the United States. Another – she has always fought her weight (like mother like daughter!) but when shopping on Saturday she told this whole long tale of how she one day woke up and decided she didn’t want to be a size 16 anymore and she went to weight watchers and lost all the weight a couple years ago and is now a size 6-8. This is true – the size 16 to now a 6 / 8 BUT she just lost it over the last few years. Not really sure how! Oh dear the doctor says.
Lastly, she never ever stops talking!! She will talk to ANYONE who will listen. I explained that we went shopping and it took us two hours to get through two stores because she just wouldn’t stop talking to the girls working there. Didn’t matter that I said 100x’s “We have to get going. I have to bring Connor to practice!” Nope she kept talking. They come to all the kids games. We have had to start positioning her so she isn’t directly next to anyone because she will talk to them through the entire game. She did this last night and thankfully it was one of my dearest friends beside her, humoring her, laughing, and enjoying her chattiness. Thank you God for these friends! As we talked and I thanked them for humoring her, they said “She is soooo pretty Leslee. She’s just beautiful!” I respond with “Yes, she is and when it’s my turn, just tell me I’m pretty please. That will help!!” Lots of laughs ensue.
Ok, we are done. We spewed a lot. Now the questions come from the doctor. They weren’t what I expected. They were about us and mostly directed toward him. She explains that although she is her patient, we are the ones caring for her patient so she needs to make sure we are ok too! First, “Who is your support?” He points to me and says “Right there! She’s my support” I nod and smile and make a wise crack of course! She says “That’s great. Ok, who is yours? (directed at me) I respond with “I blog about it which helps. I have a great family who let me just cry or be alone or laugh with me when needed and I have the most incredible friends anyone could have!” She nod and smiles and says “GREAT! Definitely keep writing -it’s therapeautic, I agree!” She must do the same!
Next she looks at him and said “You’ve been through this before caring for your mother-in-law do you think it was a help or not now in dealing with this again?” His response shocked me and I don’t even know why! I think because like most of us I think of them as my parents, PERIOD. I don’t think of them as “in love” or being “loving” they are mom and dad and frankly don’t we all believe a little that the stork dropped us off because the alternative is, well, GROSS! He says “It definitely helps but it’s different because as wonderful a relationship as I had with my mother-in-law, she was my mother-in-law, this is my wife, this isn’t how it was supposed to happen and I know what the end result will be. This will not end well.” Insert screeching breaks in my head and a big WHAT!?? You are kidding you are just mom and dad…you don’t have feelings, I mean not like that!! Please no…not now!! Gulp, deep breaths, oh my god, DO NOT CRY…PLEASE do not even look at me or ask me a question right now because this may be it…I may actually lose it! They are no longer mom and dad in that instant but a couple that like any of us has experienced, are in a real relationship and the title “parent” is just a part of it but it doesn’t define them. I can’t handle this! As would be the case for us something thankfully made us laugh, I don’t remember what because I was too busy concentrating on not losing it. The moment passed and I survived it until I came home and told my husband.
The doctor suggested a lot of things today but she also said that based on the things we are telling although they need more tests to confirm it would appear that she is in fact moving into the next phase. Moderate. More deep breaths!! Damn it…you knew it why are you getting upset!?!? They start to suggest support groups for us and for her. I am open to it but I feel more like I could lead one. Who knows? We’ll see. Lots to look into.
We re-join her in the waiting room. It’s time to go. They do believe increasing her Zoloft might help. I of course suggest that we all start taking it! Kidding – kinda! Laughter erupts but still, I’m kidding or am I!? As we walk out she says “so what did you guys say? What did they want to know!?” Without hesitation I tell her. I say “they want to know how you are doing and we told them!” She said “well, WHAT did you tell them?” I said, “we told her that you have no short term memory left mom and that your long term isn’t so hot either!” She says “WHAT!? Why did you say that!? That wasn’t very nice!” uh-oh!! We are in for a long ride home! I say “Did you want us to lie!?” she said “No I want you tell them that I am getting better” Oh dear, more deep breaths…no tears…no tears… “Mom, you aren’t getting better, it’s OK” she is frazzled and upset. He steps in “Jo, this is what it is…we are on the same team here. Everything we are doing right now is for you. To help you, to help us help you and if we can’t make you better, hopefully to help someone else be better” She nods and gets in the car.
We go to lunch. I say to him when she goes to the bathroom “she’s pissed!!” He nods, “yup!” I said “she’s going to wake you up tonight in a rage! She will fixate now” He says “Yup! Cest la vie we couldn’t lie to her or the doctors. It is what it is. I’ll be fine” Ugh…I already know she will be a bear the rest of the day. Sorry Mom and even sorrier Dad.
As usual I don’t cry. I hold it in and when I get home I say “well, it’s not a surprise.” My husband waits for the collapse, the tears but they don’t come. I tell the story. I explain what the moderate phase means. I email my sister the update and I say to the hubs, “I am going to get a pedicure…it’s that or a huge glass of wine and the pedicure is healthier!” I think of my friends and our conversation last night. I think I am ok and I know if this happens to me they will tell me I am pretty and who doesn’t like hearing that?!? Off I go…Happy 1 year Anniversary Alzheimer’s! You still suck! XO
HOLIDAYS (1/16/17)
Holidays 2016…. The holidays have come and gone and we survived. I was nervous as the black Friday shopping was somewhat disastrous and that’s my official holiday kick off! Prior to “the big day” aka Christmas things were tough and strained. I could sense her nervousness and confusion. She was tougher than usual! She was confused, upset, seemingly chaotic at times.
She offered to wrap all my Santa gifts as she loves to wrap and trust me, that takes a HUGE load off my plate with everything else I have going on. I had her do it last year but could she be trusted this year?! She’s a year further in, a lot of memory gone in that time!
I decided to take the risk, I brought over each of the boys gifts and their special wrapping paper. I sorted everything and brought my youngest’ first. I said “all this…Brendan!” a few days went by and I got the call that it was all done. Next trip my oldest. I handed it to her “All this …Connor!” A few days later one more load and one more paper – “these are together gifts!” In the mix I did bring over a few other gifts that I believe to have been separated correctly but who knows!? There were a lot of gifts and it was chaos in those weeks.
In the middle of the Christmas chaos we decided to look at their bills. How can we save them $$? It’s not easy being on a somewhat fixed income. What if they live another 20 years!? Well, one way is to put them on our cell plan. I initially said, “let’s wait until after the holidays!” but then got wind of a Verizon deal. You know the deal, run right out now because it’s like the sale at Macy’s. It’s always “one day” and it’s always “the biggest sale of the year!” I am a sucker and I fell for it.
Off we go to the Verizon store on 12/20 if I am not mistaken! I say to him “leave her at home it will be easier and a whole lot faster.” I get there to pick him up and she has her coat on and is ready to go!! WHAT!?!? This is going to be a nightmare! Sure enough, and God Bless the Verizon guy for his patience with her! They got new phones. You want to mess with an Alzheimer’s patient, get them a new cell phone!! Baaahhaaa!! Sweet mother of Christmas!! The questions NEVER stopped. Over and over and over again!! The Verizon guy, smiling and answering her over and over and over again! What should have taken an hour, hedged on two! I needed a seriously large cocktail when I got home from that escapade! Too bad I had to jet to basketball practice. Cocktail would have to wait!
The next morning I got the text from him saying “All night long…why do we have new phones, I don’t understand!” UGH…I knew it would be too much for her. As I was talking and laughing with my co-workers about my experience the night before, because now it’s funny! They laughed , told me I was crazy and why would I have done that to her, and one of the therapist I work with said “Why don’t you have her getting home care!!? We can help her with coping skills, fixations etc.” Me, “What?! She doesn’t need home care. She is still ok!” They explained you don’t have to be dying or recovering from a major operation to need homecare. Imagine that, I work in the industry and have for eight years and it never occurred to me! Fancy that – I called him immediately and asked what he thought! He said “Sure if it’s covered, why not!” It is covered entirely by Medicare and Medicaid. It will be a huge help to her and even more probably him because it will help him learn some skills to cope and deter her from the fixations!
Of course she overheard our conversation and started to flip out a bit. He is smart and getting smarter with her and explained that it’s all part of her “clinical study through BCM.” She immediately calmed down and said “Oh, ok!” She will do anything for the study, thankfully! We decided to wait until AFTER the New Year to start anything so as to not confuse her further. This will be great and I can hand pick the therapist that will treat her!
Christmas Eve was great. My sister came. We hung out, opened gifts, ate a lot, and she played on the xbox with the boys. She was doing Just Dance! I have never laughed so hard. I videoed her and I still watch it now and again and laugh just as hard every time! This is the memory I want! She may have lost her mind but she still has the moves. Lots of laughs were had and for a few moments it felt normal! I even forgot for a minute that she had Alzheimer’s. She was her funny, outgoing, fun loving self.
Christmas morning came and of course so had Santa –everything seemed to be going along smoothly until Brendan opened Connor’s Go-Pro and was beyond psyched that he got one!! I had to think quick…”oh, that’s Connor’s he already opened the accessory pack! And you got the DS!” …not sure how or why it worked but after a quick, “oh man!” He handed it over to his brother! Phew, Crisis averted! I am guessing this was not even her fault but mine because I had brought over the “extras” and didn’t perhaps put it in the right pile but it’s also way easier to say it was the lady with Alzheimer’s who mixed it up!! Couldn’t possibly have been Mrs. Claus, she would never make that sort of mistake!!
We survived! We did it, another holiday in the books. After everything was packed away and I sat down for a few moments to reflect I thought, it was good, really good but will this be the last one that is this way!? Next year could be tougher as each one surely will be. Will she even know it’s Christmas? Will she still know who we are? I sure hope so but nothing is promised with this disease. It doesn’t care if we are ready or not. Time will tell. For now we’ll just keep plugging along, and who knows maybe we’ll dance a little too!
Happy New Year everyone!
GUILTY – 11/26/16It’s the holidays – An incredibly stressful time for everyone. I am so blessed to still have both my parents, along with my “in-law” family. Everyone gets along beautifully, especially when you toss in a few holiday margaritas! This year was different. Our normal tradition to go to my sister’s didn’t happen and we went to our cousins. That being said they were kind enough to include my parents as I couldn’t leave them on their own for Thanksgiving. We had a wonderful day once I got passed stressing out about my mom.
She was of course beautiful, dressed perfectly, not a hair out of place, friendly and helpful. She wants to help, constantly! The trouble is when she wants to help she can’t remember what she is helping with (remember short term memory – SHOT!) so I said 100 times, “Mom, just sit, enjoy yourself!” She didn’t listen. Thankfully V kept her busy and was super patient. I was so grateful to her. I don’t think people realize in my times of frustration at times how truly grateful I am for their patience in the exact moments they are needed.
As the day progressed stories were repeated and repeated. I cringed a few times, feeling terrible every single time. Terrible because everyone had to listen, AGAIN and terrible because I felt guilty for cringing at the thought of hearing it again! As she would start to repeat, V came to the rescue once again. She would “guess” the ending. We’d all laugh, even Mom as she would say “That’s right!” not realizing that V now could tell the story herself in her sleep because she’d heard it so many times. So grateful for the patience in others when I don’t have it myself.
When they left (earlier than we did) I was exhausted. It’s tiring sometimes. My family (the remaining ladies)– R, K, and V and I sat in the dining room going over the sale flyers, we laughed and made light of how tough she’d been. They didn’t care, they enjoyed her and know that for them it’s “limited” so it’s not so tough. I try to be cool with it and I try to laugh it off but it’s just tiring. I knew I had another day to face tomorrow. Our Black Friday tradition was to continue and I was picking her up at 5:45. I knew she was looking forward to it when she was reminded that we were doing it of course.
5:45AM I pulled up! She was watching out the window and bounced out to the car, full makeup, dressed to the nines of course, and ready to shop! The questions started as she was getting in the car! Where are we going? What are we buying? As we traveled down Rte 1 (it’s about 10 mins) those questions were asked until we pulled into Target over and over and over again. It’s going to be a long day!!
We shopped. I bought things for my boys. She asked what she could get them. I grabbed her a Lego set to give to the little one and told her we would get them both an Under Armour Sweatshirt at the outlets and she could give my oldest a gift card to Dicks or iTunes also, either is fine. Next stop Under Armour (it’s now 7am and I haven’t had coffee yet!)…grabbed some things, and headed down Rte 1 again from Wrentham to Emerald Square – For those that live near me you know this is maybe 15 (possibly 20 but I don’t think so!) minutes. I made a fun game in my head to count how many times she asked “what can I get the boys!?!” In that ride I lost count after 25. I would finish the explanation of the sweatshirt and legos and she would ask again. Ok, my patience is wearing thin. I am trying here, REALLY trying!! Apparently this is going to be the fixation today – every day there is one. Today’s is clearly what did she get the boys!
We kept going. Everything I picked up she said “I will buy it for him! I have nothing for him yet!” (depending on which child it was for!) I would explain “No, You are good, you have something!” and then “What did I get them!!?” and I would explain again and again and again! I truly kept waiting for Alan Funt to hop out of the Nike Section at Macys and say “SMILE YOU’RE ON CANDID CAMERA!!” Please Alan Funt, please jump out of the Nike section or anywhere for that matter!
We kept shopping. We ran into friends which was a nice little break to the conversation we’d been having and the questions I’d been answering. I wanted to scream to them and beg them to take me with them but alas I was her ride and I needed to keep her close. Shopping is not the same. When I go to the mall with friends we split up in stores (you ladies know what I am talking about!) and meet in the middle finding each other to say “Do you like this!!?” I can’t do that anymore. I can’t wander. I can’t let her out of my site as I am terrified she will get lost; she isn’t that far gone and she’s not Paddington but still, I worry, but that she would panic at not being able to find me so I stay right by her side and occasionally let her wander a little but within my eyesight so she feels independent.
Finally, our day was winding down. “Want to go to breakfast,” I say. She would never say no! Back in the car, all the way to the restaurant, “I have nothing for the boys!” “What can I get them” “I feel terrible, I have nothing for them!” I explained every time. At one point I heard the frustration come out the extra long “mommmmm, you are alllllll settttttttt” I wanted to slap myself!! I know she can’t help it! ARGH!! You are such an ass, patience!! Use your patience!! Constant fighting with the voice in my head!
Breakfast was LONG. It was 100 times of the same “What did I get the boys?” OR “I have nothing for the boys” OR “What can I get for the boys” Every time I explained. I dropped her off at 11:30…5 ½ hours of the same thing over and over and over and over again. She invited me in and I quickly replied, I have a photo shoot, gotta jet! She said “Ok, we’ll have to still go out and get something for the boys another time!” I simply replied with “Absolutlely, no problem!” As I drove away I wasn’t sure whether to laugh or cry.
I walked in the house and said “Oh my god!! I thought I’d kill her today! I really thought today was the day I’d snap!! I am not sure I can do this again next year! It’s too much. She’s tired and it’s worse when she’s tired” My hubby immediately said “Les, you have to just tell her it’s all set and move on, she’ll stop asking if you say that!” Now it’s him I want to smack and it’s not even his fault! I said “REALLY!?!? Do you think I didn’t try that!!?!?! This isn’t my first rodeo! I DID say that and I tried every trick and game in the book!! But thanks for your super advice honey!” He quickly crept out of the kitchen! The boys laughed and said “So what did she get us!?!” Now I want to slap them too and they were actually just being funny kids!
I later texted him and said “sorry I didn’t come in!! I needed a quick get away! She was REALLY TOUGH today!” His response – “It’s been that way for a few weeks. She’s driving me nuts!” I forget that I am not around all the time. Yes, they live .6 miles but with work, the kids, my photo business, I am not around all that much. I don’t see them daily and sometimes not even weekly and if I do it’s often 10 mins here and there so I don’t notice. I felt guilty immediately again. Poor me, I had a tough morning! He has a tough day, every day, it is 24/7. I don’t know how he does it.
Thanksgiving is a time to be grateful and thankful for all that we have. I am so thankful that I have such a wonderful family, and especially that I still have them both, but I am also INCREDIBLY thankful that they don’t live with me! Guilty as charged!
PS. I share these writings with him as he’s not on FB. I just recvd a text – “Another great chapter! My day (night) ended at 1am when she woke me up because she couldn’t remember what she bought and why you didn’t leave the presents for her to wrap. It was a very boisterous “GOOD NIGHT”….
CORN CHOWDER – 11/16/16
So, I’ll make this quick…You all know how it is with my mom. Alzheimer’s is such a funny thing. It’s terrifying, horrible, amusing, confusing – all wrapped into one! You know by now my attitude with it is to just embrace it and laugh at all that we can and when we need to, we cry. She is the first one to say “I don’t remember” and we are the first to say “Ha, no kidding!!”
Today -I am sitting here at my computer googling corn chowder recipes because I have a ton of corn left over from our office Thanksgiving. My thought was “hmmm…I love corn chowder so I will use it for that” Never made it but how hard can it be? I can cook and I can certainly follow a recipe…hopefully I won’t kill anyone! I google. I find one. I text him and say “You guys like corn chowder?! I am making it today! My family won’t touch it so I figure I will share with you! No promises as it’s my first try but you’re welcome to be my guinea pigs…” His response – “We LOVE it! Happy to be your guinea pigs!” Great!!
A few moments later a text pops up – It’s him…He says “Mom says she thinks there is a recipe in the recipe box she gave you for the wedding” Wait, what!?…this was my wedding nearly 13 yrs ago! Everyone gave me a recipe and they presented it to me at my shower. I have added others since over the years and it’s truly a gift I treasure. I say “hmmm…I’ll check” thinking – NO WAY…she’s nuts!! I hop up, go to the kitchen, grab the box, start rummaging through – hit the soups/stew section – SURE ENOUGH!! There it is!! I believe it’s my friend Julie who gave it to me…I am not sure if it was at the shower or later but regardless she knew it was in there.
I took a photo, texted him and said “How the HELL did she remember that!?!” His response “She laughed and says ‘I have NO IDEA’” ….Ahhh…the mysteries of life” ….it truly is! Alzheimer’s takes so much but it starts slow, very slow and it starts with your (short term) immediate memories. Those from the past, well those are stored safely for quite a while, kind of like my recipes in my treasured recipe box.
Here’s hoping the chowder comes out well. I know I will be making it with a little extra love today!
It’s not contagious (10/4/16) ….
Every so often I get upset, really upset about her Alzheimer’s. I take her out as I did this weekend for a few errands and a pedicure and she repeats and repeats and asks 25 times in ten minutes, “where are we going again?” I explain and after an “Oh yah, right! You told me that” there is a brief pause and it starts all over again. I have learned, and it hasn’t been easy to be patient, to be kind, to be understanding and to just smile and re-answer the question. Is it always easy, Hell No but is it worth it to upset her by saying “I just told you” when she truly doesn’t remember, HELL NO!
This weekend I realized a few things. People are afraid of it. The word Alzheimer’s scares people. Is it because they are afraid they will get it? That they won’t be able to handle seeing her this way? Does it hit too close to home? They just don’t want to be bothered? Are they afraid they will get it too!? I’m sure it’s that and many other things but I can assure you ignoring it doesn’t help either. I assure you, it’s not contagious!
This weekend was her 50th High School reunion. I saw the pictures on Facebook. Social Media is both a blessing and a curse at times. I thought, hmmm…weird. Surprised I hadn’t heard anything, no mention of it. She is usually all over that stuff. She LOVES it. She used to be on the reunion committee. My parents both taught me to always be involved. I get my insane need to be involved and volunteer my life away from them. Their whole lives, my whole life growing up they both volunteered…for EVERYTHING. I do the same and wouldn’t have it any other way. These are things, the people, the stories she remembers.
When they lived in OH she’d fly home for it every five years and would be so excited for the year leading up to it! I’d go shopping with her to pick out just the right outfit every five years! I used to make fun of her when I was younger (like waaaaay younger probably still in high school myself) because she was so into it. I was like “what do you care – you haven’t seen these people in five years! Or Wow, you are old!! You’ve been out 20 years!” I’m not proud but I was a kid, and at times an obnoxious one. Now that I have been out 25 years myself I get it! It’s fun to see your old friends, reminisce and remember the good old days and now with social media (this being a blessing piece) be able to say “how is little Billy? Looks like he loves soccer! ” and fall right back into where we are in 2016 vs. 1989.
So, anyway – I see these pictures and I immediately text him. I said “did you know her 50th reunion was this weekend!?? He responds “no, how did you find out!?? Oh my god, please don’t tell her now, she will be devastated!” I explain that I saw the pictures on Facebook and he says “I will double check everything but I don’t believe we have received anything on it. That sucks because I would have taken her. She would have loved to have gone!” I respond with “I also would have taken her and trust me, the secret is safe!” We know the wrath we will face if she finds out now! At that same moment I received a message through Facebook from one of her classmates asking how she was doing and saying they missed her at the reunion!
I looked at my husband in that moment and threw the phone down. I burst out crying…cried like I haven’t in a LONG time and said “THIS SUCKS!!! IT TRULY SUCKS” I feel like she has leprosy. She is not contagious. He of course, didn’t know what to do or say other than, “I’m really sorry hun! You’re right, it does suck!” I told him to imagine it were me in her shoes and how would he feel if I were excluded!?” He just shook his head and said “I know. I know. I don’t know what to say,” for the record, no one ever really knows what to say.
Maybe they tried to find her. In fairness, she has moved and changed her email and doesn’t go on Facebook any more BUT they also know how to reach me as many of her friends have friend requested me and I have accepted so they can stay in the loop with what is happening to her. If they really wanted her there someone could have sent a message to me with the details and I would have made sure she was there. The funny thing is; I am not surprised this happened. It happens a lot. The reunion is one thing but there are many that she is excluded from. It may be a get together with friends, a luncheon, a phone call that isn’t made. I watch, I see.
What sucks the most about all this is she would have remembered her friends. Her days in high school. She would have been happy as could be sharing stories of “remember when” because frankly, that is what she remembers…50 years ago!! It’s ten minutes ago that she struggles with! That’s where he and I come in. We remind her or speak “with/for” her.
Alzheimer’s is so alienating. It’s hard to carry on a conversation with the person suffering with it. It sometimes is the same conversation around and around again but the truth is; one of the best medicines for it is human interaction. Being out there, having conversations, listening, learning, being social. The patients themselves tend to become anti-social. They tend to not check their phones, emails, Facebook because they don’t remember, especially her generation because the technologies are newer to them. “Back in the day” they didn’t have cell phones, email, or social media. They may see you today and not remember tomorrow but that’s what we are here for, to remind them that, no in fact you saw your best friend Susie yesterday. They feel alone; they are scared but just as they feel that, we feel it and see it for them. It’s heart breaking. My advice if you know someone that has it; still be there, be their friend, try, really try – harder maybe than ever and when it feels like they aren’t putting half as much effort as you know that they aren’t and be ok with it because they can’t. They simply don’t realize.
This weekend I lost my sense of humor for a bit. It doesn’t make me weak. It’s ok to say this sucks on occasion and have a good cry every so often because it truly does suck. I laughed the next day when I brought over a fridge full of food for them for the week and she said “Oh, I can’t remember the last time I cooked like this…not sure that I ever have!” and I laughed and said “Mom, you can’t remember five minutes ago” followed by her and my dad both saying in unison “You got that right!”
They Are All Soliders – (8/5/16)
Well, it’s time for another appointment. Yesterday was the big day. How was the Zoloft working with the Donepezil? Was she handling it ok because if so we go into the trial phase. She has been fine so into it we go. Dad and I walked in knowing it would be a long appointment but didn’t really know why. As we entered the Dr.’s office, a new Dr. for us he sat us down and said “well, here is what we are going to do, we have a lot of paperwork for you to sign, info to give, tests to take today!”…Alrighty then!
Next he says “she needs a partner, who is it going to be??” This person has to be at every appointment which will be at least once a month indefinitely and could be 2-3 hours at a time. Well, sadly as much as I’d like to be at every appointment as someone who works full time I can’t commit to a day off every month so Dad wins the prize and gets to be the partner. At this point paperwork comes out and I swear there were more things to sign then when we signed for our mortgage!
As we sit he begins to tell us that she is a part of this new trial that is a partnership with Eli Lily and Astra Zeneca, two of the largest pharmaceutical companies in the world. They have teamed up and the point is to see if this medication will stop the effects of Alzheimer’s from spreading. Essentially it won’t cure her but it will stop it from getting worse!! Sweet mother of god that would be AMAZING!!! He explains that 20-30 people from this practice will participate but 2,500-3,000 will participate from around the world. The pro’s – they find a drug that stops this from getting worse! The con she could be one of the patients on a placebo for 18 months, we won’t know until the study is complete.
After the 18 months she will get the drug if she was on the placebo to begin with so either way she will get it it’s just does she get it now or later. She becomes a number in the system so we won’t know at least for now! Please let her get the drug…pretty please!!
Any Questions!? …She asks “What is the normal age that this happens?!” I am shocked she asked. His response “Unforutnately no one is safe. We’ve seen patients in their forties and we have seen patients in their 90’s…but overall, you are young honestly. It’s more likely mid-seventies that we see the biggest populations, you are 67.”…This is not comforting as she nods and says “Lucky me!” We all fell silent for a moment and then he began to speak again. He thanked her profusely and said although this may not help you as much as we’d like where you already have the disease, you are helping so many people, future generations, your children etc. She nodded and said “That’s why I am doing this!” She has instantly become a hero to me. She is an Alzheimer’s soldier going into battle and she is going to help us win the war. I am so proud of her. She has always been my hero but in this instance with the courage and bravery she has faced this with since we got her diagnosis, I couldn’t be more proud!
I am escorted out now and the testing/questioning of each begins. They are both taken to separate rooms to meet with different people. I sit in the waiting room. I see faces that have been there a long time. They must all be joining the trial as usually the office isn’t so full and patients are usually in/out. I sit. I observe. I work from my phone as much as possible. I played some candy crush. Two hours I waited. The whole time I watched as patients waited, chatted nervously and then as they became people with a common ground, kindred spirits so to speak.
As I sat, two gentlemen were there, in and out, meeting with doctors themselves, their wives reading on their kindles, smiling politely at each other. They didn’t know each other before today. The two gentlemen eventually started talking about food because the office staff had offered us all lunch. Turns out they were both former military. One a Marine, one a Navy Corpsman, here come the stories! I sat and listened as they instantly became 20 somethings talking about the old days and busting each other’s chops because the Marine would have been the Corpsman’s chauffer and the Corpsman could cut always cut the chow line! The Marine even thanked the Corpsman for his service as he actually served and the Marine was “just a reservist.” I looked at these men as they talked and I thought – What happened? Why is this happening!?!? They looked young and healthy – they all do. There is no “look” at this stage…just the repetitiveness. They don’t look sick, patients don’t wear a badge, no one knows unless you start talking for an extended period of time the troubles they are facing, your family, and friends, we all are facing!! I hate you Alzheimer’s!
The men are chuckling away and swapping stories, mom comes out. She immediately sits next to the Marine and starts talking away as if she knows him. She looks at him and giggles and says “Ooops!! You aren’t my husband!!” Everyone bursts out laughing and the Corpsman says “Gee, I guess we all know why we are here! None of us can even remember who we are married too!” Mom responds with “well,I may like him better!! After 47 years maybe it’s time for something new!” The waiting room is in hysterics now with jokes, banter, all at their own expense. In my head I think we are going to get kicked out of here they are so loud and boisterous. My dad comes out and joins the party! It was as if they had been friends forever and maybe in some ways they have been or will be now. They are for sure linked together in this fight, all of them soliders…a Marine, a Navy Corpsman, and my Mom…in the battle to end all battles for themselves, for us, and for the future.
MOMENTS OF CLARITY – (4/16/16)
I have decided as part of my way of dealing with my mom, I will write on occasion about what is going on, the good, the bad, and as it gets ugly, that too! I don’t consider myself a “writer” but I sometimes express myself better in writing and perhaps it will help or ring a chord with someone else who is going through “the A Word” too. There are lots of books and stories out there that I can read but this is my / our story and I am ok with sharing it. I can’t see movies like “Still Alice” yet because I am fairly sure it may cause the flood gates to open and I may never be able to close them. I do read other accounts, articles, research but for now, writing about it is more therapeutic.
When we last left off, we were waiting for her to have a PET scan and most importantly definitive results. Mom had agreed to become a lab rat to determine what’s going on as she didn’t have an official diagnosis just yet. For now it was just MCI, Mild Cognitive Impairment with Alzheimer’s tendencies!! The PET scan was scheduled for about 2 weeks later. A week after that came the phone call to schedule a call with the doctor. That’s never a good sign. I decided that it would be only me on the call as they weren’t sure they could “conference” everyone in. Why put Mom through that again. I knew what we were going to be told and it was not going to be a surprise, rather just a confirmation of what we already knew in our hearts and were fairly sure we’d hear that first diagnosis day. I was right. The doctor didn’t waste any time; she cut right to the chase, Alzheimer’s it is. It’s not a surprise. In some ways it’s almost a relief to finally know. The doctor says she is in a great place. It’s still considered mild although if you live with her you’d struggle with that as every day seems to get worse. It’s hard to imagine this is mild and knowing it is going to get so so so much worse, never better but alas we know this is what it will be.
I texted my dad as I was on the phone to tell him. His response was, “No surprise. It’s what we expected.” My sister said something similar. When you have been dealing with this as long as we have, nothing is a surprise.
The doctor (who is amazing by the way!) asked if I had any questions!? I said “No, not really. But I am curious as to why the Aricept is so expensive $163 (roughly) a month!! Not an issue now but they are older and on a fixed income, this is going to become an issue eventually!! She was mortified and said “No, that’s not right it shouldn’t cost any more than co-pays!” I was instructed to call the office the next day and we’d figure it out. I called first thing and they were going to look into it because that doesn’t make sense. I called CVS also (always trying to be proactive)…they said the same thing! They assured me that they must have forgotten to run their Medicare card, send them in and, they will re-run it and reimburse them the $163. Awesome!! I call my dad, he runs over, card in hand and the call came…”We don’t have Part D, Les there is nothing they can do!” WHAAAAAAAAT?????????? How do you not have Part D!? This is getting real. I have to call Medicare now, God Help me, and this could take all day!!
I immediately hung up and I called Medicare. My initial thought was truly, here goes hours of my life that I will never get back! It took some time, I’m not going to lie but finally I got a great guy on the line. I explained the situation to him and he was incredible, running every program he had. He explained that they could sign up for Part D at open enrollment in October but let’s see what we could do before then. PLEASE PLEASE PLEASE do, nice guy on the other end of the phone!! Well, it turns out they make too much money for every program Medicare offers!! Haa!! Funny, considering I know what they receive every month and I can’t imagine how you live on that. I already know I can never retire! By all accounts they are considered “rich” in the Medicare world! Did you know that when looking at this it’s their “combined” Medicare income, not just what my mom makes to determine program eligibility!? Well, lucky them!! However, this gentleman felt terrible. He said, “Ma’am…there is one more thing you can try…here is a #…call them. It’s an Aricept “trial” and they sometimes offer free or reduced rates and I believe your parents will qualify.” Oh YAY, another phone call!! I thanked him profusely and I hung up in hopes that my next call would bring some good news!
I called immediately of course! FYI, I HATE automated systems. I finally got someone on the line who informs me that this is not the correct # but try this #…Oh my God, I am going to lose it soon!! Hours on the phone at this point already! One more call, let’s hope this is the right number. I call it and sure enough it worked!!! They qualify! It’s a company called rxoutreach. I can’t believe my luck!! A three month supply of Aricept is on its way to her for $15!!!!!! I feel like we won the lottery!! Not only that but in the meantime they had their physicals and needed other meds, blood pressure, etc., nothing serious. Those are on there too! They can order everything directly through this company and pay less than they would if they had Part D. Thank God! One problem solved!!
I called BCM *(Boston Center for Memory) where Mom goes – who by the way I can’t say enough about! They are truly incredible! I inform them of the “why” and then tell them about the rxoutreach. They were thrilled. They didn’t know about it either but took all the information and will now share with their patients in case they too are not on Part D. There should really be a class for seniors so they know what to sign up for and what not to when they are of age to receive Medicare services because it’s confusing and there is a lot of info to take in. I am getting quite an education. I am lucky because I can help my folks and can research stuff, but what about the folks with no one to spend the time to help them! UGH! My heart breaks for those people.
Now, the call comes for the studies to begin, back to that. Mom initially agreed to be a guinea pig/lab rat at her first diagnosis appointment! I got side-tracked by the whole Medicare/drug issue, sorry! They have to go into Boston to the VA for the initial intake. I worry. I want to go but I can’t! I have already lost quite a few days of ETO to go to appointments and there are many more to come. They have driven in the city their whole lives but they have been away, living in Ohio for 20 years. The city has changed so much!! Dad isn’t as “secure” a driver as he used to be now at 70, especially in the big city, and mom, well she doesn’t drive at all anymore and can’t even find her way home so this ought to be interesting! UGH! I show Dad how to set his GPS on his “Smart phone” and off they go! So 2016! He tells me the next day that it was a nightmare getting in traffic/construction wise but they made it and they even made $10 for going!! NICE!!!
I asked him about the tests. He said it was tough. He sat there while they questioned her and he couldn’t speak. As an aside, the way that they handle things now (the cover up as I like to call it!) is she will often look to him for answers very sweetly and he will do so. To those that don’t know them they think, “aw how sweet…they speak for each other. He really knows her!” For those that do know them, it’s hysterical because my Mom would never have let my dad speak for her! No way, she was a force to be reckoned with. She was independent and no one spoke for her. She would answer her own questions and that was that!
I digress, so the questions begin. Name vegetables that start with A? …She can’t think of any! Another question “Name all the fruits you can in a minute” …she came up with 4. NOW, that being said, it’s easy for us to rattle off a big list of fruits but we also aren’t under pressure – I know because I did it – listed all I could think of rather quickly. I think that we can all agree we’d have more than 4 but 40? who knows!? He said she kept looking to him for help but he could say nothing! 
As they were walking out she said “I think I probably failed” Dad said he chuckled to himself and thought “ya think!” Here’s the laughter it gets us through.
As they were walking out she said “I think I probably failed” Dad said he chuckled to himself and thought “ya think!” Here’s the laughter it gets us through.I took her out shopping and for lunch that weekend. She was having a good day. She was clear. She even told me about the tests. She told me she and dad had gone into Boston and that she even got paid $10 to do so as she laughed about her new windfall. I said “Mom, I think that it’s so awesome that you are doing this. It may not help you personally but it will definitely help future generations and that is so great!” She looked me straight in the eye and said “That’s why I am doing this Leslee. My mom had Alzheimer’s, now I have it, and if I can do ANYTHING at all to help you and your sister to not have it, I will do whatever I have to do and it will all be worth it. That’s why I am doing this. It’s not going to help me, but hopefully you” I wanted to grab her and hug her and burst out crying with her. In that brief moment I thought, “How horribly scary this must be for her.” I always just think she doesn’t know what’s going. We know she knows she has it but she forgets so it’s ok! Right now, in this moment, she knows and it sucks and there is NOTHING I can do for her. Damn you Alzheimer’s. Damn you!! And like that, the moment is gone and she asks me three times in a row, “what did I order for lunch!? Did we order already?” …ahhh…thank you for Alzheimer’s letting her forget so quickly that you exist and that she has it! Here come our salads! 
Since that initial test she has done 3 more testing days. The grad students come to their house now instead to work with her and run / perform these tests. I am thankful for that as I don’t want them going in/out of the city every week. She makes $10 every time which she thinks is just fantastic! I told her she will be rich in no time! I asked her just yesterday, “Mom, what are the tests like?” Her response “They ask me all sorts of memory questions!” Me “Like what!?” Mom “I don’t know, I can’t remember!” as she says with a laugh…Me “Nice Mom! So do you think you failed?” Mom “Probably!!” and we both laugh harder! And so we move forward. Today she may remember and tell me all about it but yesterday, not so much!! It’s still ok, it’s still easy. We can still laugh. I hope we always will.
Just this past week I had my physical. I updated my doctor on the entire “goings on” with my mom, as she (dr) knows my fear of Alzheimer’s for me, based on these horrible genetics I seem to have. She reiterated ways to prevent it – Diet, exercise, vitamins, etc. She assured me that science has come so far and is only getting more advanced in the search for the cure/prevention. She did mention to me that I have been on heartburn medicine (prescription strength) studies showed recently it can increase your risk of Alzheimer’s. I told her that I too had seen that and had stopped taking it immediately! I have also cut out Tylenol because that too has a risk factor. Lastly, she offered me “the test – apolipoprotein E (APOE). APOE – it’s the genetic test you can have to determine if you have the gene the dreaded Alzheimer’s gene!” I told her NO, and I started to well up. She did too oddly. She said “I agree with your decision. You are 44 you don’t want to know that. I don’t blame you” I said “I can’t know it. I will worry every time I can’t remember something, which I already do because I know it’s probably coming – It’s too much and for now, I assume it’s inevitable but am hoping to be pleasantly surprised! Maybe with any luck I will take after my dad!”
This weekend, I made them some meals. I brought everything over yesterday so they are well stocked for the week! One of the things I made was one of their favorites and mine, kale soup! Mom said “I hope it’s good because I make excellent kale soup!!” Hmmm, interesting, I can’t remember the last time she made kale soup or anything else for that matter!! I responded with, “Well, I work in Fall River and my co-workers have approved it, even so much as calling it “Delicious” so it can’t be that bad but if it isn’t you won’t remember you didn’t like it anyway!” She laughed and said “True!! Thanks for bringing it!” …and like that off I went to do my errands. Bye, Love you guys….see you Wednesday!
P.S. I got a text last night that the Kale soup was Delicious – Mom approved! 
Brendan’s 1st Communion 2016
Three Month Check Up – (June 21, 2016)
Hard to believe it’s only been three months since we got the “official” diagnosis. It’s been six since we started this process. It’s been 6 years since we first started noticing significant changes in her. It’s time to go back. It’s a quarterly thing. We are to meet with the doctor, the neurologist, and make sure everything is “ok.” Is it ok!? Well, that depends on what your definition of “OK” is?! To me, none of this ok. It’s tolerable and it’s our life so we can’t dwell on it. We just deal with it, one step in front of the other, one day at a time, hopefully she doesn’t get worse. I have said it before and will say it until the day she takes her last breath, laughter and finding the humor in this, that’s what makes this “OK!”
Off we go. I pick them up promptly at 9am because I know she will be driving him crazy if I am late. They are outside waiting on the stoop! I immediately chuckle to myself and think “the senior van is here!” I can tell she is upset when she gets in the car. Not quite herself, more repetitive than normal (which again, normal is very repetitive!) Once we arrive she goes to the ladies room, he says “she’s NOT HAPPY!! She doesn’t want to be here. She’s embarrassed, she feels fine, doesn’t understand why this is all necessary!” I look at him and laugh and say “Haa!! Ohh it’s necessary!!” She returns, and they take her off immediately to start the testing. He and I get taken in to meet with the doctor to discuss the changes we’ve noticed.
I feel like we are betraying her, like we are talking behind her back. We tell the doctor that we are worried. That she seems to be getting worse. More panicky, easily irritated, that her repetitiveness seems to be more frequent and her memory is fleeting at best. That she seems to have NO FILTER any more. We both say in unison she is becoming my grandmother! The doctor asks us “on a scale of 1-10 (10 being the worst) where would you say she is? In unison again without looking at each other we blurt out “SEVEN!” Haa, Jinx, you owe me a coke!! LOL! Our biggest concern, she has stopped her beading! For those of you that know her, you know that she beads and beads and beads some more! All day, every day!! Suitcases FULL of jewelry. We often joke that at her funeral there will be no prayer cards, that we will just put her jewelry out and invite everyone to take a piece or 10 to remember her by!! She does nothing but watch TV all day!! Her doctor seems worried about this.
Next stop Neurology, the three of us go in together for this one! So, as per my usual, I brace myself for the news. What’s happening!? Is she getting worse as we suspect? The doctor looks at her and compliments her and says how gracious and wonderful she has been. He knows she is very young and has been dealt a pretty tough hand, especially at her age. I can see her getting upset, she is fighting back tears!! I of course feel the need to make her laugh so I say “Hey, at least he called you young!!” She giggles and says “true!” and thanks him! Ah, laughter, it helps! He then explains that based on the tests she stayed the same on one (awesome and somewhat surprising from our chairs!!) and actually improved on the other!! (WOW, shocking really!!) That’s fantastic news! She is doing great for someone that is slowly losing her mind!
He offers her a med to take the edge off, anxiety meds. She explains she doesn’t think she needs them, she’s fine she says, and looks at us and says “Do you think I do!?” Again, in unison a resounding “YES!”…man, I am almost a 6 pack of coke in! She laughs nervously and says “well, I guess my bosses have spoken.” I explain gently that it will help her, calm her and Hell if the doctor will prescribe them for me, I’ll take them too, I have an 11 and an 8 yr old I am full of anxiety! She agrees to take them and tells me she will share!!
With this conversation comes the offer of a clinic trial they would like her to take part in. She will be eligible once she adapts to the Zoloft in about 30 days. It’s a “cocktail” so to speak of the Zoloft and another medication that will stop the plaque from growing/spreading on her brain and in some cases they have seen it go away altogether. If this works, it would be an incredible breakthrough. Is it going to cure her? No. It should however slow the progression even more and perhaps help her to improve a bit. It’s amazing actually and I am truly “hopeful” for the first time since we heard “You have Alzheimer’s” Of course she agrees to participate! Who wouldn’t? For us, there is no, worst case scenario because we all agree on one thing, whatever we can do to help in researching this horrible disease we will do it. Is her life at risk? No. Could she have a reaction or get worse? I suppose. Could she stay the same? Yes, but we already know what we are dealing with. It’s not pretty so why wouldn’t we.
We go back in to meet with the doctor and she asks her how she is doing. Her reply is “GREAT.” I chuckle. The doctor mentions to her that we told her a few things and she is concerned that she is not beading anymore and asks what she is doing to fill her time. She says “oh, lots of things! I read all the time and I watch TV!” I interject with “Oh, great, what are you reading!?” *Busted!* She says “oh, nothing now but I like to read” It’s made very clear and under no uncertain terms by the doctor that she needs to be doing something, anything to keep her mind active. This is going to be easier said than done! Great, a new project for me!
She left there happy. She of course brought a bag of jewelry to give to the girls in the office and doctor included that they swooped up in no time. She was thrilled when the doctor told her that she was the buzz in the office yesterday because word had gotten out that she was coming in!! They were all hoping that she would bring them jewelry! She talked about it the whole way home about how much they love getting her jewelry! We chuckled in the front and gave each other knowing glances that this was what we would be discussing the rest of the day. We went to lunch and walked around the outlets a bit. She did great. Even he thought so. For the first time as I repeated my answers to questions I’d already answered many times she would interrupt me and say “Ah yes, I REMEMBER!!” and she would finish the answer for me! What!? You remember!?!? I don’t care if it was for ten seconds she hasn’t even uttered the words “I remember” in ages. It was a great afternoon and for a few moments I think we all forgot where we had been and what we had dealt with earlier in the day. For just a little bit she was my mom, and she didn’t have Alzheimer’s and we didn’t’ have to worry!
As yesterday came to an end I was feeling positive and hopeful for the first time in a long time. I was chatting with friends about it and said that even if it doesn’t help her it can help us. It amazes me in the time since my grandmother was diagnosed how far the research, medicines, and care have come. It makes me hopeful that as my generation faces it, maybe it won’t be so bad. Here’s hoping and if I am wrong, just remember to bring the wine and give me a hug and tell me our favorite stories over and over again! XO
F**K You Alzheimer’s! …Little did she know at the time this would be our mantra
Turkey Day 2015 – They had moved back to MA a week before so we could start this process!
THE A WORD (3/21/16)
– Well, it’s been a long time coming – Diagnosis Day …D day in our house! It won’t be a surprise. I am fully prepared for what it will be. I am sad, but will not cry. I will be strong. I will say “It’s Ok.” I will probably tell a joke or some anecdote to make everyone laugh nervously. It’s what we expect and what we will now prepare for…why has it taken so long to get here and what happens next?
It’s been a long 5-6 years worrying, talking, and arguing over her health and her current state. Why isn’t she doing something? Why isn’t he? We have known for some time there was something wrong and only getting worse as years pass by. The repetitiveness, the forgetfulness, the nervous angst, the signs are there but could it really be? Why? She is so young. She was 59 when we started noticing it but is now 67. Why her? Why is this happening? She is so full of life, beautiful, and happy. She loves with all her heart and soul. This can’t be? It’s something simple, we haven’t figured out, has to be but alas we are dreaming and hopeful and that will all soon be dashed as we sit and wait for the doctors to come in.
They moved back here to enjoy their final years (which are hopefully many) and because he realized he needs help! He can’t do it all alone anymore. We found them a place similar to their home in Ohio so they would be comfortable and she would be less confused hopefully. The boys know, it’s been explained to them very carefully and delicately so they understand and thank you God, they are so incredibly sweet and patient with her. They answer her questions a million times over as if it’s the first time she’s asked with smiles on their sweet faces!
They are able to do what grandparents that live close to their grandchildren usually do. They watch the kids so we can have date nights, help get them off to or picked up from school when needed, cheer them on at their sporting events, karate tests, and help them study and do school projects. She has always been a decent artist (nothing fancy but not stick people either!) so it gave her great pleasure to help her favorite little guy draw the flag of Portugal for his ancestor project and show it off proudly with him. These are the moments…I savior them. I take a mental picture and lock it away.
Sports- she loves them!! She wants to be at every game and gets mad at him when he won’t drive to the “away games” so I often say “hop in the car with us.” She cheers, LOUDLY in fact…and on a few times for the wrong team!! This is part of it. We played a team that was Maroon and Gold and she jumped up loudly when they scored, but this is what she remembers – my days at NHS. Wrong team!! I laughingly say “My colors were Maroon and Gold not his and I haven’t been in high school in a LONG time, but who’s counting!?!” Everyone around us has a good laugh, including her!! This week was more confusing, white and red vs. red and white. Twice it happened…Wrong team. Lots of laughs and after the second time my jokingly saying, “three strikes, and you are out of here!!” Laughter again! It’s how we deal with it. Laughter, it really is the best medicine.
They are here now. They live close. It’s a lot at times. I’d be lying if I said I haven’t gone home, walked into my room, shut the door and burst out crying, but I am happy they are here. I can keep an eye on her and make sure she is ok. I take her out whenever possible, spending Saturdays or Sundays with her running errands, going to lunch or breakfast so I can savior and remember these days/times with her, and give him a break when in the future I know it won’t be possible. I am lucky to still have her, to have them both. I know this. Many of my friends no longer do and I know they would give anything for one more laugh, one more hug, one more minute so I try to be as patient as possible, smile, and enjoy her because she is still her. She is still in there, I see it. I know it.
Sometimes I get stressed and embarrassed if we are out seeing friends and she repeats and repeats, especially if people don’t know her or know what’s happening. I feel like I have to explain and I usually do if. I always get “Oh no, I am so sorry!!” I am too, I am too!! Believe me, I am too! I have realized though that it’s nothing to be embarrassed or sorry about. She isn’t hurting anyone and she isn’t embarrassed because she doesn’t know she is doing it so why should I be. It’s harmless. Is it frustrating and annoying to listen to the same stories over and over again, YUP but it’s her story and I Iove hearing it.
I make it a game in my own head now, how has she embellished the story? What’s changed? One of the best changes to note so far is that when I was 14 we spent a month in Europe…NOTHING to sneeze at and how incredibly fortunate we were to do so but to hear her tell it – we left the day after school got out (that’s true) and we came back the day before school started (not true)…it was actually shortly after July 4th but who’s counting!
The biggest question, the biggest fear is will it happen to me!? Probably! It happened to my grandmother, now it’s happening to her and next up – ME. So, I tell my friends all the time, just smile, nod, slap me, whatever because I won’t know I am doing it just as she doesn’t. Please just still be my friends. Why do I say this? I say it because I see what’s happening. Her friends don’t come around or call. It’s tough, I get that. I know the phone/email works both ways but truth is, she doesn’t realize she hasn’t used either! She can go weeks /months without talking to someone and won’t know it. She loves you all. She talks about you in her stories. I know it could be the same for me. I hope not but it’s probable. People get nervous, frustrated, sad to see someone they know and love change. It’s not her fault but it’s life. It happens.
Here comes the doctor, deep breath, don’t cry, be strong, you already know what she is about to say, please don’t say it. Whoa….Wait…I truly believe that I here brakes screeching! I wonder if everyone else heard it!?? What is she saying right now!?? MCI?? Mild Cognitive Impairment!!! What?!? What the hell is that!?!? Does she or does she not have Alzheimer’s? Well, her cognitive testing says YES without a doubt but her MRI does not go along with that so for now it’s MCI due to Alzheimer’s Pathology. …ALZHEIMER’S seems to be the way we are heading but we need more tests! So for now we start the meds because it will help regardless of the final diagnosis. We will finally have one in 3 ½ months. For now, she will become a lab rat! She has already been admitted to “Study” that is FDA approved. She will have a very extensive MRI done. She will have Grad students coming to her house 2-4 times for 2hrs at a whack to watch, test, question…after that more meds, more test and her brain scans will be used in science, studies, and research!
I am relieved yet not. I want a definitive. I want an explanation. I want to know why she has become the way she has and I want them to be sure of their answers. The dreaded A word. I believe as I think her doctor does that it is inevitable but we don’t have to say that word with full force just yet. It’s the quotation mark at the end of the acronym. It will eventually take the mind she has left but until that moment when she breathes her last breath, I will be here. I will remind her and be her memory, we all will. It will eventually win but I swear on all that I have it won’t win without a fight. I love you Mom!