Originally written on August 7th, 2011:
Last year, Aug. 7th I was partying it up at a friend’s wedding. Since it was out-of-state, I placed mom in respite and though I had to drive to my destination, the night before the wedding I had the best sleep ever. Sleep had been a rare thing so I can’t even explain how good it felt to just be able to rest, no questions, no cleaning up, and though I love my dog to pieces, no walking the dog just calm. I’m not a stranger to lack of sleep being a major night owl for all of my life and having pledged a sorority and though some say sleep is over-rated; when you care for someone with Alzheimer’s sleep is no longer overrated! You don’t get much of it! Maybe my years of being a night owl prepared me for this moment which is why I’m able to sustain now.
A friend called that night and joked that I probably didn’t know what to do. And in a way she was right. Should I watch TV? Read magazines? Go to sleep early? I was just appreciating being able to rest and go ahhh. When I got back from the wedding, I still had a bit of calm because I kept my mom in respite for a week. I had back-to-back weekend events that were out-of-state and instead of taking her out and putting her back in, it would serve her best to stay in, that way she’d get adjusted to her environment. I had been nervous days leading up to my trip for two reasons; one I didn’t know how my mom was going to fare being in respite, and second, I didn’t know what to expect once she came home.
In answering the first part; she did very well. She had 24 hour care and more importantly she had companionship.This assured me she’d do very well in a memory care assistant living home. The other reason, where I was fearing the worse, wondering what was I going to face? Well I eventually let fears go in order to enjoy the temporary freedom I had, but once mom got home, there were changes as expected, I just wasn’t prepared for HOW much change there’d be! My mother literally forgot mostly everything. Where we lived was not familiar, she forgot where her bedroom was, where the bathroom is located, where the kitchen is; simple things she knew were now all forgotten. In my mind I was saying “You’ve got to be kidding?!” I was now in a place where I had to literally point out everything.
Picking up from there I had hoped at some point that what my mom forgot, the bigger things like where her bedroom and bathroom are would be remembered, but it wasn’t to be so. They have been forgotten and the days and weeks following, so much more has been forgotten. It’s no longer just where things are, but what things are. What a kitchen is, what a couch is, what a TV is, who I am, reminding to flush the toilet, sorry to be graphic, but caregivers need to know this all comes with the territory. Hallucinations, speaking to people who are in her mind and reacting or doing what “they” tell her. I can’t count the number of times I’ve been asked if I was going to go out with her and them.
Alzheimer’s brings about a daily, weekly and monthly spiral that you see happening slowly, but can’t stop. What was so hard then was not being mentally prepared for how much my mom forgot. I’m thinking a week or so re-adjustment and she’d remember some things, but the realization is that what was forgotten will always be forgotten. Sometimes one thing will stick (Alzheimer’s is interesting that way), but it’s reminding myself that no matter how much I show my mom, teach my mom or explain, what’s gone is gone. And “I” have to adjust, “I” have to remember each day is a new day and “I” have to treat it as such. “I” have to constantly remind myself no matter how much I want mom to remember or know things, I have to say to myself she doesn’t understand Pam, and she won’t ever again.
So what’s it going to be like next year? I’m not worrying about it. I know she will be in a declined state. She barely remembers me now, most likely I’ll be less than a blip in her memory. When I look at her sometimes, it’s so sad to see what this illness can do. It takes away the “normal” conversations, it takes away her ability to offer advice, it takes away her sharing in life experiences. I guess the comfort comes in her mind and those with Alzheimer’s, the world is OK.