My mom was diagnosed with Alzheimer’s in the fall of 2008. It’s 2019 now and she’s in the middle stages. It’s a long, arduous process and I have no idea when the disease will basically turn her into a vegetable. If you met my mom and talked to her for 5 minutes you’d never know she has Alzheimer’s. She’s funny, kind, smart, able to play scrabble and many card games, her voice inflections are correct, she can converse about almost anything! You’d notice other health issues before Alzheimer’s. But after about 10 minutes you start the same conversation over again, and 10 minutes later again- etc…. My mom can dress herself, eat, go to the bathroom, knows what time meals are and can get there, recognizes me and her grandchildren, – all the things a person should be able to do on his/her own. But, she has no idea how to look at a bank statement, no idea how to make a phone call, no idea where her grandchildren live (although sometimes she does know this), no idea what I’m doing for work even though we talk about it every time I’m there, no idea what keeps happening to her dentures (now she doesn’t even remember she ever had them- though she had them for at least 15 years before a few weeks ago), no idea why or even that she hoards sugar packs in her wheelchair bag. It’s so strange!
Jump to the fact that I now work in a retirement community. It is a fabulous place, well most of it is. There are different levels of living, and my job has me touching every part. I work with people in their 90s with no visible ailments! No hearing aids, no walkers -they still exercise daily and are completely independent- truly inspirational! I also work with people who need some minor assistance with daily living, but are otherwise great, and I work with people who are wheelchair bound and have no idea what is going on- and everyone in-between. It’s fascinating to me.
One resident is completely mobile, has great conversation skills, can count, etc., but if I ask her to do 20 of something and move on to the next, and notice she’s still doing the first thing and ask what number she’s on, she’ll say 46 and she’s been counting. She also had a #2 accident and didn’t even know it. Is that ‘quality of life’?
A few other residents are wheelchair bound and can’t carry on a cohesive conversation. There is dialogue sometimes, but none of it makes sense to me. Some are non-verbal. They can’t follow directions at all. They carry around baby dolls and fake cats that actually move and meow- both of which they talk to and I find extremely creepy. Is that ‘quality of life’?
Back to my mom. I try not to get frustrated with her, as I know it’s the disease and not her. But then, she’s not the same mom- that mom has been gone for quite awhile, yet sometimes there are glimpses of her, which is why this whole thing is so bizarre. She sometimes knows she can’t remember things and questions if she’s stupid; she sees my frustration as I’m trying to be a good, understanding daughter who is slowly losing her mind having the same conversation for the 8th time in an hour, about something that is upsetting to both of us. I know my mom never wanted this, yet here we are- with no idea of how long it will last and me knowing it will only get worse. She’s always happy to see me and so appreciative of my time with her. I’m beyond grateful that she is happy and always recognizes me. She enjoys the treats I bring, sitting outside, and when I bring my dog (who she asks every time if he’s getting bigger, which he isn’t- if I don’t bring him she sometimes remembers I have a dog and others doesn’t). While I don’t want to lose my mom, I actually did a while ago, and continue to lose her more day by day, which leads me to the rhetorical question: what is ‘quality of life’?