We know how this story will end....

I can't believe it's been nearly a year since I wrote anything.  I have written a million times in my mind but never actually typed it out. It's different, I think where she is in a facility and I don't see the "day to day" anymore. Not as many "stories" to share.

What a year. 2022 is now over and 2023 is here.  So much happened in ten months.  After burying my dad,  things with mom didn't calm down any.  In fact, things went from bad to worse.  We knew she would never get better. We've said that since the beginning of this horrible disease but I suppose in everyone, there is always a little bit of hope that it won't happen or be "as bad" as you are told and know it will be. You want to be the family whose family member just closes their eyes and goes to sleep and doesn't wake up one day.  You don't want to watch the torture that endures as your family member continues to decline.  

When I started writing about her, we were at "the beginning" I would document and share funny stories and I swore I'd keep at it until the end.  Well, the end is near and I don't have anything profound or unique or funny to say.  I feel sad.  I feel anger. I feel helpless.  She is 74! She was so full of life. This was supposed to be her time. She should be enjoying her grandkids. She should be laughing at me as I stress out because I have two teenagers that I adore but can't stand all in the same moment at times saying "I remember those days."  She is supposed to comfort me as I bring my oldest to college in the fall. Laughing as I cry hysterically and saying "Just be excited for him. That's what I was for you. I was sad, yes, but I knew you'd come home. I was mostly just excited at the new world we'd just opened for you -be the same for him!"  She didn't deserve this. No one does and yet no matter how many walks we do, or how much money we raise people are being diagnosed and going through this every single day. It needs to stop and a cure needs to be found. It's too late for her but we need to do better.  Our future deserves so much more.

February was a blurry month. I had to travel for work. We were getting our lives back to normal after losing Dad.  We cleaned out his apartment in a very business like fashion. Donating a lot to friends, family for their own homes / apartments and a Savers getting the rest. Mom was settled and we just kept on keeping on. I'd get calls almost daily that she had fallen.  That she had a UTI or that they were rushing her to the hospital again.  I had signed a DNH so I couldn't understand how they could still keep sending her but they always found a way until one day I finally flipped out! I lost it! No more!

I remember March 18th. Why that date? Well, it's my son's birthday and I got the call bright and early that she had been rushed to the hospital again. I lost my shit to put it mildly.  I rushed to Brockton to meet her.  Turns out she had a torn ACL - Well, of course she did. She had fallen a gazillion times.  That's what happens.  She was in an "assisted living" with a "locked memory care" unit.  Here's the thing, Alzheimer's or memory care patients are not going to get better - EVER! Please, if I can give you any advice - Do not put your loved one in an assisted living if they have a memory care related diagnosis unless you don't mind moving them - which is one of the worst things you can do a memory care patient.  They need more care than that. They deserve that. Shame on us for not realizing this but it became very clear, very quickly.

Sorry, back to the torn ACL. It had to have happened in one of her numerous falls. The dr. asked what we wanted to do? We decided of course no surgery. Surgery would likely have killed her and although we don't want her to live like this, we also don't want to be the ones to kill her. You can live without an ACL. Only a great athlete needs that and let's be clear, we are way passed our athletic years here. I think what amazed me the most is that when we told the facility that she had a torn ACL they acted like "How? That's so weird. How could that have happened?" Umm.....let's think about this!

It was clear, she needed more care.  How? Where? We have to move her AGAIN. I was so pissed at myself. I had asked all the right questions when we moved her there. "CAN SHE DIE HERE? Will you be able to care for her until that moment when she passes?"  I asked it exactly like that! The answer "YES" we will bring hospice in and she will have the best care.  Well, ok but what about that time between her failing and needing hospice. What about then? Who is caring for her because it certainly wasn't the facility.  I get it. Nowhere is perfect. Everywhere is short staffed but good God, this was dangerous.  I couldn't do it any more.  She needed to be moved. Simple. Was it though?

I called my sister. I told her, "it's time" we have to move mom again. She has to go to a SNF (skilled nursing facility) - I have to start looking again. She is on a specific program so we need to look at facilities that take this program (PACE) and I don't want her in any of these places. They are far from me and gross!! The only place that was remotely acceptable was a spot in Braintree that had a wait list.  We could take her off the program, which seemed like the only viable option to get her in a place we both felt suitable but do we want to do that? Looks like we may not have a choice. We decided we needed to weigh all options so we had her on wait lists in Braintree and North Attleboro right away.

Way back when we started this process, my sister begged us to let Mom go to Newburyport, near her. It was a solid NO.  There were many reasons but the main being, Dad was alive and wanted to be able to visit her whenever possible. He was going to go "daily"  so she had to be near us.  Well, of course as we know, life took a dramatic turn and where she lived was really a moot point after not too long. 

I called her and said "Ok, if you still want Mom, you can take her if you find a spot in Newburyport" I can't do the paperwork if we take her off her program as getting her onto the program initially was a full time job. I absolutely didn't have it in me to do it again for a new spot. That's on you but I will transfer everything and give you whatever I have to help but that's it.  She was thrilled and immediately started working on things and I worked on things in my area.  She was on wait lists so we waited. 

In the meantime, it was business as usual. I would visit her weekly and watch as she declined.  I will never forget the day that I walked in and she stared blankly at me. She had no idea who I was. I had mentally prepared for this day for years.  Trust me - NOTHING prepares you for that day. NOTHING.  I had made my youngest son come with me. I immediately regretted it.  I didn't want him to see her like that. I didn't want to see her like that.  She was trying to eat buttons (like big huge toy buttons) I took them out of her had and said "That's not candy Mom" She looked at me blankly as she tried to grab for another. Jesus Christ- What is actually happening right now. I could feel myself sweating. I thought I'd pass out for sure.  This is not real. This can't be where we are at. I saw her last week and she smiled and gave me kisses and mumbled I love you and now she is eating buttons?!?  

When we left, I burst out crying the second I got to the car. B looked at me and said "Mom, what's wrong!?" I said "Oh buddy - She would HATE this. She didn't want this for her, for us! She was sooooo full of life. Always so fun and loving and now she is eating buttons! She would die if she knew this is where she was at.  I would want to die if it were me! I'd never want you to see me like that!"  His response in perfect B timing "I will never see you like that mom!" Me "Nice, B - you won't take care of me!?" B "Nope - I'm going to do what you've told us since Vovo go like this - If this happens to me "Shoot me" so I'm just going to shoot you!!"  and like that my tears stopped and I burst into hysterical laughter and said "that's why you are my favorite!!" I pray to God he keeps his word if this ever happens to me!

I got numerous calls that she fell. Numerous calls that she needed to go to the hospital. I will never forget the one that they forced me to talk to the fire department. The fireman said "ma'am, we are going to take her to the hospital" Me "No, you aren't" him "ma'am -she fell" Me "is she broken? Is she screaming in pain?" him" No ma'am" Me "then LEAVE HER - she is in the end stages of Alzheimer's, I assure you, going to the hospital is far more traumatic for her than falling on her bottom. Leave her" As I hung up I cried, feeling like the worst daughter in the world! 

The next few months were tough. She would have flickers of  "knowing" but she was mostly blank! T and I kept working on a new spot for her but there were waitlists every where!  She was positive we would get her into her spot in Newburyport. She was right. She called me in June and said "It's open! We have a spot!" I called her facility and gave notice.  They were sad to see her go and assured me that they could care for her. I got rather stern and said "WHAT!? No you can't  - you call me a few times a week to let me know she fell. You rush her to the hospital every chance you get! We are DONE!" She is moving in a week!"

The week she was moving, I couldn't help. My husband was working the US Open and I threw my back out to the point that I couldn't even walk. Thankfully, one of my bff's and B brought me the facility and I pointed, they packed.  Thank God for both of them! I said goodbye to her as quickly as I could. I couldn't think about what I was doing.  I felt like I had given up on her, on me.  I promised her I would take care of her and now I was letting my sister take over. Was I weak? Maybe? Was I tired? For sure!! I had been the primary care giver to her along with my dad for 5-6 yrs and my dad for 18 months as he died!  I was absolutely tired.

That week was hard -I couldn't move. I was in so much pain in my back but I was so sad. So incredibly sad. I cried so much that week. I apologized to her a million times in my head and even out loud when no one was home.  I had made a decision and I had to live with it but I'd be lying if I said it was easy and that I didn't second guess myself a million times. 

Tarah came and moved her. She updated me constantly. She was doing well. She was loved. I got up there as much as possible over the summer but it definitely wasn't weekly like I was seeing her.  I felt so guilty but there was nothing I could do. I live 1.5 hrs from Newburyport -without traffic! On one of my visits, we had to sign new paperwork. I signed over all power of attorney to her. I think she was surprised that I did that. I looked at her and said "You are here! You need to be able to make the decisions quickly and if someone has to be here, it's you. Not me" We never make decisions without talking first, I trust that will remain the same, and it has.

I have to give my sister credit, she swore to me that if I let mom move to Newburyport, she would visit her EVERY DAY. I told her to not even put that sort of pressure on herself. I would hope she would get there once a week at least, that's what I expected but daily was not my expectation as I know how hard it was to get to her more than weekly when she was near me (she was 25 mins from me!) Well, she goes daily sometimes 2-3 times a day!  She has encouraged friends and family to visit and they have. She meets people there to make it "easier" for them.  She (mom) has had more visitors in 6 months than she has in 10 years. I don't know if she knows it or recognizes anyone but she is loved.

Tarah would always send me updates after every visitor. She has kept me in the loop every step of the way with everything. I am beyond grateful for that. I know we did the right thing for her. She is in a wonderful place. They love her and care for her but I will always feel a little bit of guilt for not keeping her near me. She would share with me good days, bad days.  Every time I saw her it was a "bad" day. It became a joke.

It's funny (or not) but when I did go see her over the last few months, she would look at me, almost annoyed. I would laugh but in my heart, it crushed me. I felt like she was angry with me.  Like she felt like "Wow - you quit on me! You couldn't take it any more so you sent me away" Crushing and probably stupid to think like that but it's how I felt and I have always been honest in these "blogs" so not going to stop now. 

As we got close to the holidays we did our family holiday gathering. We included our two close cousins this year to add more fun to the mix.  T reserved the library at the facility for us to all get to see her and have a little fun with her. As we were pulling in, T texted us that she was having a terrible day and was sound asleep sitting up.  "The Leslee Curse" Strikes again!! We had some laughs. We held her hand and she sat in her chair sound asleep.  As I went to kiss her goodbye she put her hand up to block it.  We laughed and said "that's not nice" She let me kiss her cheek and off we went.  

Later that week, Tarah called and said "Mom, is failing! They want us to put her on Hospice, are you ok with that?!"  Of course I am but "WHAT!?" How did that happen so fast.  We let those closest to us know right away and we now wait.  If you know us, you know we are both control freak planners so to not know "when" is hard.  She could hold on for a little while but I don't think so. 

I went yesterday as she is not doing well.  She opened her eyes for a second and seemed to smile. In that moment she gripped my hand tighter and I felt relief. Maybe she was waiting to see me and would now let go? I held her hand. I cried. I told her it was ok to go, just as I did with my Dad. I told her she was the best mom ever and that I would see her again on the other side. I asked her to make sure she watches over the boys. They need all the help they can get! I sat there and felt like I was having an out of body experience.  How the hell am I saying goodbye to another parent so soon? Dad will be gone 1 year on January 19th. This isn't right and it isn't fair. Alzheimer's is a brutal brutal beast.

As I left her room, ok as I ran out of her room, I was crying of course. Thankfully my husband was driving me because after that smile, I cried, off and on the whole way home. 

As I reflect over the last 6 years of having them back here. I am forever grateful. Regardless of how tough the toughest moments were, I am glad for each and every one of them. I am happy I was able to help with their journey and be with them in their darkest hours and toughest of times.

The ending isn't pretty.  We are not there yet.  We pray she transitions quickly for her sake. She deserves to be free of the chains of Alzheimer's. We will be there soon enough.  For now, we wait but we know how this story ends.