Is this real life?

 

Is this Real Life?

Well my pretties at last check in we were heading down a slippery slope! Slipperiest one yet. Mom is failing quickly and toss a little cancer into the mix for dad along with Covid ruling our world and you have the hot mess express.  Pretty hard to imagine it got worse but it did! Buckle up kids and may  I suggest you make some popcorn, you aren't going to want to miss this one.

Soo...Dad update.  Esophageal cancer! Not good, right!?! Welllllll....let's just toss in a side of tongue and throat/neck cancer to make things super exciting.  We had suspicions but everything was confirmed within a couple of weeks of the initial diagnosis.  So now what!?  Mom is disaster. Dad needs care. I am one person with a full time job, a part-time business which is booming, 2 kids that are doing hybrid learning thanks to "Rona" and oh a husband that I might want to talk to once in a while! My sister lives 1.5 hours away and although helping it can't be daily for obvious reasons like they will need so the majority falls on me - not complaining or bitching just facts.

The first weekend after his diagnosis I remember I cried a lot. I was at their house showering her and it was truly like I was dealing with a toddler. At one point for a split second, she gave me a look that "my mom" would have given me. I closed the curtain, went to the sink and started to cry. I dried the tears, took a deep breath and finished cleaning her up.  Once that was over I went out to talk to him. I had to say based on the news we got that it could go either way. He is convinced he will live to be 90. Well, alrighty then. I still had to tell him that he if chose not to fight, it's OK. We will be ok and we will make sure Mom is too. I cried the whole way home. It's a 1/2 mile so it's not that bad but I let loose for those few moments before I had to pull it together to walk in the house and smile for the boys who weren't yet aware of how real things were / are about to get.

How in the ever living hell is this going to go down!?  I think after the initial shock of all of this I may have cried, again - I seem to do that more often lately. I allow myself very brief intervals before I pull up the boot straps and work my way through it. I definitely laughed and I definitely said WTF - A LOT!  I still say it - A LOT!  So here is where we are at  - Radiation 5 days a week for 7 wks, Chemo once a week for 7 wks and a lot of prep work. There were Petscans, MRI's, a port placement, a feeding tube - you name it! A crap-ton of phone calls, emails - Clinical Care Coordinators, the mad scramble to get more care for mom....Are you feeling me!? Managing this, them, their care = FULL TIME JOB!  Did I mention I already have 1.5 of those!?!?

Here's what we've got - Treatment at 4 daily and Chemo Thursday mornings.  The treatment will be tough- HARD!! It will be Horrendous both for him and us scheduling wise. Many of the clinicians have said "I have never treated all 3 types of cancer at once" Will he even survive the treatment!?  We are warned it could kill him. He is Paulie Positive and thinks he will beat it, no problem! They say 7 -8 wks of HELL and he is fine with it. I already mentioned that I have told him if he doesn't want to do it we will support him - it's up to him. He chooses to fight. He thinks 8 wks and it's done. I know that this is not the case. I know there will be side effects for a long time, possibly forever and I am fairly certain this won't be the only go-round with treatment. They tell me hospital stays may be involved, there will be dehydration, blood transfusions, infections - you name it, we need to be prepared for it! Oh Goody - more shit on our plates because there wasn't enough already.

It is what it is - we have to figure it out. One step in front of the other.  Baby Steps, right!? Ok. What do we do with Mom!? Well, he can't really care for her and frankly he's done. It sounds cruel and it sounds horrible and many of you may think that he's a royal asshole. Honestly, I have had my moments. BUT then I try to think - How would I feel if I were fighting for my life and my husband had NO CLUE! Not a clue in the world. Every time we come home from radiation and he is tired she asks "why are you tired? why aren't you going to eat?!" He snaps! "I HAVE CANCER" her response is always "ohhhh...that's awful"....so imagine you are weak, you are sick, you could possibly dying yourself and you really have no one to comfort you the way you would hope your spouse / partner would. It's distressing. It's sad. I feel for him but yes but I do get angry at him as well for having zero patience with her about something that is well beyond any of our control. This is my mother after all and it's most certainly not her fault and most certainly something no one ever wants to deal with. Don't we think if she could be healthy she would be. Wouldn't we all be?!

We are able to get some extra care for her thank the good lord- 12 hrs and we find out about the Alzheimer's grant and get approved for that as well. That allows you two hours of free care a week. Perfect. Someone to at least come in one morning a week and shower her so it's one less battle we fight!  These 12 hrs - it's GREAT but the hours are just screwy enough that someone has to be there with her before or after because he won't be there as he is going to be at radiation so it's these 30-45 min windows that might kill us. She can't sit in the car while he is getting radiation she will disappear and when we have to start driving him we don't want to disrupt her care so we have to figure it out.  Awesome, just add it to the to-do list! 

Treatment starts - it's fine - he can drive himself the first week or so but quickly goes into a hazy fog and no longer feels safe so now we are on to two of us being needed. One to drive him- one to stay with her for that non-covered time.  Jesus take the wheel.  On Thursdays we are with her most of the day because he is at chemo.  I work from there or when my sister is here she does the same or tries to cook/clean for them. I am passed that - I just can't! I need to work!!  I do need to give my hubs props! I don't feel like I do that nearly enough but he has been amazing. Driving Mr. Daisy, covering my mom when those uncovered times happen if need be. Offering to take time off to help because he has like a year of PTO accrued so why not! I never doubted that he was a great guy (well maybe sometimes!! LOL) but he has definitely risen to the occasion and has given me hope that when I can't remember my name he may actually take great care of me!

Let's talk about her for a moment shall we!? She is still as sweet and beautiful as ever but she can no longer sign her name. I know this because I needed her to sign some health care forms and it was like watching my kids learn how to write their names when they were 5!!  She is very often incontinent and has to be prompted / reminded to go to the bathroom constantly - IF she makes it.  I am changing her and washing her constantly because again if she has an accident (#2 not #1) she just tries to pull the diapers off and shit literally goes everywhere as she laughs or says "OH NO!! Oh Dear!"  ....Yah, that's not what I say but let's go with her wording!  The other day it was 1:50 - the aide was arrive at 2 and I could smell the shit. She had literally JUST gone to the bathroom 5 minutes before! I said "Mom- did you have an accident?!" I checked her like I would have my boys when they were wearing diapers and said "ARGH - Ok - let's go -into the shower!!" God Damn it!!! I almost made it out unscathed for a day!!  I truly thought about leaving her for 10 mins so the aide could deal with it but of course that stupid thing called guilt got me!  Off we go. Naked old lady boobs and shit everywhere! Good times!

She can't complete sentences or thoughts. She starts to say something -always random and senseless but can't even finish it. She absolutely has no clue half the time that I am her daughter. She definitely thinks that I am her sister and often introduces me as such.  She doesn't think that my boys are her grandchildren and truly can't remember their names. They are her nephews most often and she has not a clue in the world that she is 71 or that she lives in my town. To her she still lives in Peabody. When we take her home she asks why we are there as she doesn't live there.  She can't dress herself without everything being laid out and even then I have to stand there and watch her or she may decide underwear (aka Depends) or a bra aren't needed (back the 60's anyone!?) I have to put toothpaste on the toothbrush and watch as she brushes. She needs to be told to raise her arm to put on pit stick and  so on! She certainly can't cook for herself so we need to be sure she is fed. She can't even find the bathroom in their small apartment! - it's down the hall on the right fyi!  It's sad. So very very sad! 

We need to find a home for her. How? There is no money for a home!? Financially it's brutal. Assisted Living? Skilled Nursing?  Long-Term!? What the hell!? We need her on medicaid, STAT- like more than stat, like a year ago Stat!  It's paperwork - A LOT of paperwork. How the hell do I do this!? I know that I will screw it up!? I screw it up and we are delayed even more.  Awesome! Well, Dad's clinical care manager and incredibly close friends of our family recommended that I talk to the finance office at the hospital - they can help! Low and behold they walked me through step by step. Every time the state kicks it back needing more information I get an email from them within minutes so we can go on the hunt for more information!  Today for example four hours of my day were lost - I can't even count the hours I have lost at this point to get things needed, care coordinated, phone calls, doctors appointments, rides - I digress! It's A LOT! 

I truly feel that the way our system treats the elderly is beyond comprehension. It's a disgrace and a disservice! Those that need it the most can't get what they need without going through hell and being virtually penniless to get the help they so desperately need. This however is another story for another time.

Shit got REAL a few weeks ago. He went into the hospital, just as we had been warned he would. His white blood cell count was .7 - average is apparently between a 4-10. He was in for a few days - now what do we do with her!?  Well, by the Grace of god my cousin who has been amazing through all this offered to take her.  Perfect. She is so loved and tended to with her that it was a no brainer.  She was there from Thursday - Monday! I was set to meet them to pick her up Monday afternoon.  We would meet half-way.  I got awesome texts all weekend of their updates and what they were doing. She didn't know it of course but she was being spoiled and loved on and having a great time!!  This was perfect!  

Well, around 1:10 on Monday I was in a zoom interview and I saw her name flash on my phone for a second and then it went away. I don't know what made me text her but I did. I said "LOL- Butt dial? I am on a zoom but if you need me I can call you in about 30 mins!" She responded - "Call me RIGHT NOW...EMERGENCY!" Oh Jesus - Emergency?  She fell? Hurt herself? Flipped out!? What could it be!? I immediately wave to my boss and the interviewee and say " I am so sorry but I have to take a call - I will mute myself and turn off my camera but give a yell if you need me!" I call and I hear "Your mom is missing!!!!" Me, "Huh? What?" - literally confused and not sure I am hearing correctly I then hear "The police are here and we will find her. It will be ok, I promise but I have to go talk to them" I feel the blood rush out of my body and I start to shake. For a split second I think "so this is how it ends?" I open my office door and my direct boss is walking out of hers - I yell her name and she must have known something was up through my masked face because she ran into my office shut the door and said "What is going on!?!?" I tell her the story through tears and then say "CRAP! - The call!-(big boss)  he's on the zoom!!! I have to finish the call!!"  She looks at me like I have 25 heads and says "are you sure!??!" I said "yes" I take a few deep breaths, pull it together and calm down and finish this and then go to NH!" As we are finishing up I get a text - "We found her!!" Praise the freaking lord!!!!  I finish the call and call her right away!!

They had just picked her up! She was found about 3/4 of mile from their house on the side of the road. She was tired and scared but OK! She had given her childhood address and had no clue how she got there! She had carried her freaking coloring caddy with her!! That's how they knew she was gone. She has a caddy that has about 10 coloring books and a 100 colored pencils!! She carried it with her!! At that point as I know my cousin is needing a laugh I say "well why not! I mean Jesus - if we are going to get lost in the woods we might as well color! Thank God she brought that with her!!" My poor cousin was a mess at that point!  We knew this could happen I say. As she fought tears she said ‘but it wasn’t supposed to on my watch!!’ The truth is - it could happen on anyone’s watch. When we met a few hours later to do the exchange, I bought her a much needed drink! 

We talked about their great weekend and told the story of the day in front of my mom. She kept looking at us and with a horrified tone said "Oh My God!! Who would do that - I can't believe someone would do that!? WOW!" Yah mom, "WOW! Who would do that!?’ The story has a happy ending so of course we can laugh about it. I mean she carried her freaking 2-3 lb coloring caddy for Christ sake! By the way, you may wonder how it happened that she escaped. Well, it takes no time at all. You think that she is fine, coloring away and run to shower or go to the bathroom and boom. Never had reason to think she would move. She'd been sitting there for hours!

Two days later and she was home safe and sound or so we thought! She escaped my youngest son as we were on our way to radiation! I believe she was furious that she didn't get to go with us. She’d been downstairs waiting with him so when my son took her back into the apartment and told her to have a seat she refused. He had kicked off his shoes, removed his mask, and tossed the keys down.  She said "I am not staying here!" He asked her to sit again - she refused and ran out! I get a hysterical phone call saying "MOM - VOVO GOT AWAY!!! I CANT FIND HER!!"  I whipped the car around so fast, I am not even sure that I looked! We were 1 minute from their place thank god!! I asked how a 72 yr old out ran him and being a kid, when she walked out he jumped up, put his shoes on, grabbed his mask (because you have to wear a mask at their complex, it's the rules!) and grabbed the key to get back in! Now, we know as adults we would have just run - he knows that now! As he got out of the apartment he saw her as the elevator door shut! Fortunately when she got into the elevator she must have hit the stop button because the elevator was not working! Maintenance came flipped a switch and the door opened and out she walked - Yet again -Coloring caddy in hand. Thank god for the GD coloring caddy!! 

After these two incidents we are able to get approved for 12 more hours of care so now we are looking at 24 hrs (26 if you count the Alzheimer's grant!) They set it up relatively quickly! AND the best part - they are covering those times before or after where we were missing coverage but desperately needed. Praise Jesus - it's a Christmas miracle! Or is it!?? NOPE - 5 days - 4 out of the 5 no-show or showed up early and left early - whatever they felt like. I had to fire them. I can't deal with that. I'd rather just cover it myself and plan on that than get a call that there is no one there and I need to get my ass over there or send the kids. It's problem when I am at the office in Braintree!! Enough. I will continue to figure it out because I have been anyway. Now we are back to 12 hrs of care again not that we ever weren't there since they no-showed anyway.

I am seriously at the end of my rope.  I have days that I think I can't take much more. He's being an asshole. Snapping at everything and everyone (mostly me and my kids!) because he wouldn't dare with others. Again, not that it's unfounded. He's sick. He's tired. He's worried about mom. I try to be patient, bite my tongue and keep on doing what I do but I would be lying if I said I haven't outright told him to "cut the shit - I am doing EVERYTHING here and I don't need to be snapped at every time I ask a question!" I am sorry. He's my dad, and he is sick and I get it but I am tired too. My mind isn't shutting down and I can't stop to take a break because too many people are depending on me. Not looking for sympathy. It’s just a lot for one person. 

The paperwork alone for them!? OMG! The phone calls - it's all INSANE and time consuming like you wouldn't believe.  There's nothing left to give. I am trying desperately to be patient and kind and even more understanding than I ever would. be. I am trying to have a sense of humor but it's definitely waning. My kids are struggling. They know they have 2 sick grandparents. They don't remember her as ever NOT having Alzheimer's. Think about that, they are 15 and 12 and they only remember her with Alzheimer's. They ask me constantly if Vovo and Papa are going to die soon? I don't like to lie to them but I truly don't know the answer to that.  It's inevitable that they will die of course - they are supposed to. I guess I just didn't think that it would possibly be so soon. Who knows - again, he says 90. I told him to shoot for 80 - baby steps but he won't hear of it. If he doesn't change his attitude I may kill him so there's that! Maybe that old curmudgeon will just outlive us all. Who knows. 

We are close, so close to getting her placed. We have options. I have tours set up and I know that it will be soon. I am not ready. I cry every time I talk to a new place. I know it's for the best. She will be ok and she will be treated well, I hope. I just fear that with Covid we won't be able to see her or worse that she will get it and that will be that. Maybe that is the least of my worries. I don't know. I know that my kids can't see her because they aren't over 18. I know that if I go see her I have to schedule an appointment come at that specific time. That I can't hug her. I have to stay 6 feet away from her and I have to wear a mask. She will have NO CLUE who I am. Not that that is anything different but still. I try to envision it and I cry. I think about the day we move her in - just me and one other person allowed if all works out - How on earth will I leave her there!?!? HOW!??! I am crying again thinking about it. This is my mom. The woman who loved me, raised me and gave me everything and would never ever have given up on me!! I feel like I am quitting on her and I am struggling to forgive myself for this.  Not sure I can or will. 

So, when all is said and done - the last 4 months have been hellacious. That is putting it mildly. I have truly asked myself if this is real life a million times. Again, absolutely not looking for sympathy. I am so blessed in a million other ways. this is just the crap you have to get through to see the good sometimes. I have always been honest with my blogs so I am not going to sugar coat it now as we are nearing the end of our Alzheimer's journey.

I have a village full of support and without them I would without question have broken by now. They make me laugh constantly! They let me vent. Bring me meals so I don't have to cook, send hilarious Tik-Toks or meme's out of the blue. They send me check in texts or calls. They don't care if I answer they just want me to know that they are there if I need to vent.  I am lucky indeed. All this other crap aside, life isn't so bad. There are people that have it far worse than me so I will continue to smile, and laugh and do the best I can with my 35 different jobs right now. It probably won't get better or easier any time soon but that's life. No one said it would be easy.