World Alzheimer's Day
The 21st of September marks World Alzheimer's Day, a part of World Alzheimer's Month. My grandmother had dementia (likely of the Alzheimer's-type) for many years and passed away in 2014. We're encouraged to use this month to focus on the prompt "Remember Me", where you reflect on your favourite memories, or those of a loved one. These aren't my favourite memories, but they're important ones. I wrote about some of the good memories here.
I have never hidden my diabetes from anyone except my grandmother, and it was quite the effort. For four years I didn't test my sugar in front of her, didn't touch my pump, and didn't say a word about my now broken pancreas. She never knew about this really big part of my life, and that makes me incredibly happy in some ways, and sad in others. Not knowing about it meant that I couldn't share some of my achievements with her, like starting work with Trapeze, or doing my major work in high school. But for her sake, I'm happy she didn't know. She had dementia, and at that point it was so far advanced that she may not have understood what was going on. Even if she did, it wasn't worthwhile upsetting her because you'd have to keep breaking the news again and again. Which makes me wonder, why are you telling them at all?
So instead of inflicting that on her, I decided not to tell her. We visited her regularly, and she forgot my name. She would ask at first, but then after a while she forgot my relationship to her. This was probably one of the most difficult things about dementia. I was very close to her as a small child, and she almost felt like a third parent because I saw her so often. But she forgot, and my role changed to seeing her not for my own benefit, but for hers. I'm not sure what it was, but despite not knowing who I was or how she knew me, she was almost always very pleased to see me. Maybe it was because I was young. A lot of the nursing home residents and staff liked to talk to me because they had seen me grow up over the years of coming in.
Whenever we came to visit, she would insist that I come and stand close to her, and sometimes hold her hand. This suited me fine because I had a lot of trouble talking to her. I never knew what to say, or how to say it. Now having studied speech pathology, I know how to communicate with people who have dementia and aphasia. But at the time I didn't, so I would just stand nearby and smile at her a lot. Sometimes I'd bring in videos of myself playing the piano because she really liked the music. I don't think she minded this arrangement.
She would have a pretty typical routine every time we visited. She'd look at each person and comment on what beautiful eyes, noses and mouths we all had, and ask the others to agree with her. She'd repeat this a few times over, sometimes ask why we were there, and where we were going.
Sometimes it wasn't so nice and she would be a little upset or angry because she was disoriented. Sometimes she asked when she was going home, even though she hadn't been home in years. Once she thought I was my mother, which was tricky to navigate. I'm certain there were more occasions where things didn't go very well because I remember leaving the nursing home upset pretty often. But not remembering them is probably for the best.
Most of my memories of her are in hospitals or the nursing home. I was under 10 before it accelerated due to a stroke, so I can't remember many things. I can't quite remember her voice. I can't quite remember her perfume. But I do remember how much I loved her, and I'm pretty sure that was mutual.