Alzheimer’s and Grief

You don’t know it’s the last time until after it’s already gone.

When I was little, my grandmother would tell me that she had nights where she couldn’t sleep. Her mind would race and she would think about people late at night. I was too little to understand the concept then. Now, I find myself facing the same sleepless nights.

The other night in particular, I had the hardest time sleeping. I laid down at around Midnight but I was unable to fall asleep until sometime around 2:00a.m. Thoughts of my grandmother were racing through my head. I’ve mentioned how my grandmother is diagnosed with Dementia/Alzheimer’s in one of my previous entries. I didn’t go into much depth about it, but it is something I think about everyday.

When I was still living in Boston, I shared an apartment with my Grandmother. I have lived with her since I was a teenager, while my parents lived on the floor above. It gave me a sense of freedom from my parent’s although it wasn’t quite my own apartment. For the sake of shortening things I will refer to my grandmother as Noni.

Noni has not only been my grandmother since I was born, but she was also one of my best friends for most of my life. When I was a little kid I remember coming home from school and she was always there to open the door and greet me. We had a lot of shows that we used to watch together. I remember when I was little I’d rush home from school because Barney would be on, and I didn’t want to miss it. Noni would always watch it with me. She never really mastered English, but I spoke enough Italian that we communicated perfectly with a mix of the two languages that we had mastered together. She’d always tell me “Let me know when the ‘I Love You’ show starts!” That’s what she called Barney because she loved how they’d sing that song at the end.

{To the tune of This Old Man]
I Love you
You love me
We’re a happy family
with a great big hug
and a kiss from me to you
won’t you say I love you too

Barney’s End Song

Everyday she’d watch that show with me. When I got older my taste in Television changed. Instead of Barney I started watching The Drew Cary Show which Noni LOVED! (“Put on the show with Mimi!” she’d say) or I’d watch The Simpsons (“Put on the animated cartoons” she’d call that show). Everyday I’d call her when those shows came on and she’d come shuffling into the living room and sit next to me on the couch to watch them. I thought it was so cool that we liked the same shows…it took me decades to realize that she didn’t necessarily love the shows themselves, just the experience of watching them with me. I wish I’d realized it then.

She’d even watch movies with me on occasion although she usually fell asleep during movies. Whenever I wasn’t watching TV she’d ask me to find a Judge Show to watch. Her favorites were Judge Judy and Judge Mathis, and she’d watch them almost every day with the same reasoning. “Maybe I’ll understand or learn an English phrase here or there.” I was always a firm believer that Noni understood way more English than she let on.

She was also great because she would play games with me. She was diagnosed with Alzheimers when I was about 13 or 14 years old. She would play so many games with me before that though. I taught her how to play Checkers, Monopoly and Uno. She LOVED UNO. She taught me how to play Italian card games like Sweep, and Ace Takes It All. We’d spent hours at that kitchen table playing games together. My favorite memory of playing a game with her was always Let’s Go Fishing.

Let’s Go Fishing the game

I feel like most kids have this game growing up, and I was so excited to play games but didn’t have a lot of friends my age around to play with. I didn’t have play-dates or cousins my age. I didn’t go to friends houses. I used to come home and teach Noni how to play and hope that she would understand enough to play with me. This game spoke for itself. When they open their mouth, catch the fish. This game was so much fun to play with her because she’d get so animated. It’s colorful and fast paced and just a hell of a good time. You really don’t even need directions.

I grew out of playing games like that as I got older and video games became my primary mode of entertainment. I once tried to get her to play a video game but she was too old country to even want to try. I still tried to make time to play cards with her here and there too.

We’d do a lot together even after she was first diagnosed. I don’t think she was ever aware that she had Alzheimers because it’s hard to explain to someone who doesn’t understand the language, and who also has the disease. She slowly changed though.

At first the changes were so subtle that you don’t notice things. One too many mistakes cooking and she doesn’t cook anymore. She doesn’t even mention the fact that she doesn’t cook anymore, it’s just something she doesn’t even know she did.

From hanging her clothes outside all the time without issue….to needing her cane to pull the clothesline down to her height…then needing help hanging them…then unable to hang them altogether.

I watched slowly and without knowing as Alzheimer’s took away so many wonderful pieces of one of my best friends and the only grandmother I’d known in my life. I’m reminded of a quote about having children.

You won’t know it’s the last time until it never happens again. The last time they asked to be picked up. The last time they need help pouring their drink. Or snuggling in for a cuddle on the couch. The last time they asked to hold your hand.
Try to treat each moment like it’s the last time because once it stops and you realize those moments are over; the ‘ lasts ‘ will surely be missed. Even if they currently seem like annoyances.

That’s not only true with children but also with Dementia patients. If I had known that the meal Noni had made that day would be the last time she’d cook maybe I’d have eaten it a little slower. If I understood I’d never play Uno with her again maybe I wouldn’t have made her Draw 4. If I’d known I wouldn’t watch a show with her again maybe I’d have watch a few more.

As you grow up it is inevitable that you will lose people in your life. It is espeacially true of those that are older than you. It never makes it any easier to deal with. The hardest thing about dealing with Dementia is that I’ve lost so many different forms of Noni and it hurts more and more each time.

When she wasn’t her “normal” self I went through so much grief. Noni only used a cane to walk when she left the house, and then suddenly she had to use it around the house too. She started getting more repetitive. She didn’t really cook as much and didn’t follow along as easily. She was changing.

Then she couldn’t do steps as well, and instead of walking she shuffled. She didn’t do much walking around the house either anymore. She only sat in front of the TV to nap. She couldn’t do many of the things she used to. I had already started grieving because she’d lost so much of her qualities.

She was like that for years until she got a little worse. She then barely walked even around the house. She only did her Search Word books and napped on the couch. Her memory visibly failing as daily occurrences would be forgotten by her. She couldn’t keep track of the days. I continued to grieve but harder because now it became simply a matter of time. There is no cure for this terrible disease.

Then she got sick, and it was clear she was at the stage where she needed help in her daily routine. Washing, eating, medicine all had to be supervised. She was very out of sorts, and excessively repetitive. It can get so frustrating because a logical thinker trying to communicate with someone who’s logic is failing is difficult. I grieved harder.

When I moved to Missouri one of the hardest things for me was leaving my Grandmothers side. She had spent so many years taking care of me that I almost felt a sense of honor in taking care of her. I was not her primary care giver in any sense, but I tried to be her entertainment to keep her company and help with little odds and ends around the house when I could. The idea of anything happening to her while I was 1,000 miles away made me so anxious. I cried often about it. [I have been crying most of this post to be honest, that’s how deep my love for Noni is].

I can not count how many hours I’ve spent crying and mourning her and she’s still alive, she is still with us. I’ve lost so many versions of her and it hurts me daily each time I think of what was gone. I try so hard to be thankful and appreciative for two reasons. the first being that many people don’t even get a relationship with their grandparents losing them while they are still very young. I am blessed to have had my Grandmother all my life still. I am also blessed because even after having been diagnosed for more than 17 years she’s still somewhat functional and alive. I have seen dementia take people much faster than that.

Shortly before I made the decision to move I was with a friend of mine, let’s call her Angel, and she’s an older religious woman. We were parked in front of my house as I was about to go in, and I broke down crying about my move to Missouri. In short, I defintely didn’t want to go because I’d miss out on my family.

She pointed at my house and said “Osito, [that’s what she calls me, it means little bear in Spanish] no matter where you go this house will be here. These people will always be here. 1,000 miles or 10 miles they are still your family. You being here will not change anything. The lord will make what will happen happen, whether you’re here or not. Don’t stay waiting for things that may not happen for years.”

She was right, and our talk was a lot longer than that, but she helped give me the courage to take the risk on this move. That’s why I call her my Angel. She’s always been a direct line to God in some auspicious ways.

Shortly after I moved to Missouri she was hospitalized and ended up in a wheelchair. She had to do physical therapy and that was the only time she would walk. It wasn’t long before the walking stopped all together. She ended up just staying the in the wheelchair all the time. She refuses to watch TV, hasn’t done so in a long time. I don’t think she can see or comprehend it enough. She barely speaks now, and I never thought I’d miss how repetitive she was until she got to this point. I mourned even harder.

Every time I go back to town I’m always scared that she won’t know who I am. It is an inevitability that I prepare for everytime I go, but she’s yet to let me down. They say when I come visit she talks more and is SLIGHTLY better with memory. I hadn’t seen her in six months, which in dementia time may as well be forever. On my most recent trip I walked in and saw her sitting there and I was nervous to even ask.

“Hey Noni! Do you know who I am?”
without a second of hesitation she said my name and immediately followed it with
“What do you think I’m fucking crazy? You’re like a son to me.” It was such a relif to know that she still knew me. She doesn’t know I’ve moved, she just thinks I’m at work everyday. The only blessing of dementia is that she doesn’t miss me much, she’s just excited to see me. She held my hand and wouldn’t let it go.

Usually when you’d ask her age she would say either something very high like 100 or very low like 56. When I asked this time she answered correctly “86” I asked her if she remembered when she smoked and she said “Yes. Marlboro light 100’s but that was years and years ago.” I was impressed it was the most clarity she’d had in years. She said a few other things that were accurate but she only repeated the same sentences again and again. I was grateful to hear them each time. I think we held hands at that kitchen table for an hour before she let go.

She hardly eats, and it’s got to be puree food just for her to swallow it and dehydration is a big concern because her brain doesn’t properly convey the messages of hunger and thirst. She spends most of her day sleeping in her bed. I have absolutely no idea what, if anything, runs through her head at night.

Fast forward to me the other night. At 1am. My boyfriend snuggled in my arm fast asleep as tears silently stream down my face. I lay there thinking of Noni. Reminiscing on all I lost and wondering how long before I lose her all together. It’s a horrible way to think but I couldn’t stop. If I could go back in time and have an hour with her at her most lucid I’d give up almost anything for that. To ask her questions, recipes, and stories just so I could get them all down before she’s gone again.

When I was little I would tell my grandmother that she needed to write a book. Just of all the little dirty rhymes and lymerics she would say. Her rules and her stories. My grandmother has such amazingly funny old school rules she would repeat to me all the time.

When you go to someones house and they offer you food, DON’T TAKE IT! Whatever they offer you I will make it for you, you can’t trust other people.

Noni

If you see people fighting on the same side of the street you are on, cross the street and act like you saw nothing.

Noni

I am so glad that she’s influenced me in such a big way. I listen to a lot of Italian Music from the 50’s, 60’s and 70’s because of her. I’m very deep in my Italian culture and stories because of her.

She taught me her language, not just Italian but how she spoke. My sense of humour, and so many of the things I do in day to day life are thanks to her. She’s always been a huge and wonderful influence on me and because of that a big part of her will always be here. I bonded with her more than my other brothers, and I could go on for hours about things we did together.

Today I just had to vent. I had to vent about the constant grief that comes with dealing with Alzheimer.

When I moved here I had to find a job, and for some reason a nursing home was mentioned to me. I went there and had an interview, and I also had an interview at a Family Video [akin to Blockbuster]. Family video offered me more money and a higher position but I was drawn to the nursing home. I knew I had the patience and love to deal with these type of people. It is the most gratifying job I’ve ever had and the most stressful under paid job I’ve ever had too. Everything happens in life for a reason, and I think my Grandmother helped me to grow the patience so that I could positively effect the lives of 160 other residents.

Without knowing it, she blessed them all because if it weren’t for my experience with her I wouldn’t have wanted to or been able to take this job.

Right after I moved my family sent my a care package and they each wrote me little cards and notes. On a ripped piece of scrap paper written in my grandmothers handwriting was three little words: “Ti aspetto sempre” which means “I will always wait for you.” it was the last thing she wrote in Italian that I know of.

I keep that little scrap of paper like it’s a link to her. She knows I will always wait for her too.

I laid there crying thinking about all of this and more and I prayed

“God…take all this emotion, all this love that I can’t give her right now and send it to her. Let her sleep peacefully tonight and help me to get some rest too.” it calmed me down a little bit. And slowly after a little time I was able to fall asleep.

I miss my Grandmother. I miss her how she is now, and I miss how she was too. It is truly painful to have to mourn, but to have to do it constantly for years is emotionally and spiritually draining. I’ve done a lot of reading and research into Alzheimers, it’s a horrible disease that we can only delay and not cure.

Some books that have helped me or educated me were:

Learning To Speak Alzheimers by Joanne Koening Coste
Still Alice (fiction) by Lisa Genova
Before I Forget by B.Smith and Dan Gatsby

I also recommend the Disney Film Coco, as it deals with the discussion of a grandmother with Alzheimers too.

There are lots of books, even childrens books to help discuss and educate. There’s a lot of help out there too for those who are caregivers because it is emotionally and physically exhausting.

This is a deep and personal slice of my life that I think about every single day. The joy, anger and fear of dementia and the constant grieving of the lasts that you didn’t know would be the lasts…

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