I’ve never minded solitude, for a writer it’s a natural condition, but caring for a dementia sufferer leads to a peculiar kind of loneliness - Laurie Graham
I’ve learned a lot about dementia in the last 3 years. I’ve learned a lot about myself, as well. I’ve never been very good at being patient and I had a tendency to get frustrated if I had to repeat myself more than twice. I say “had” because ever since my mom has moved here, I’ve had a ton of practice in being patient and I can repeat myself an infinite amount of times and not bat an eye. Only with her, but that’s some movement in a positive direction.
I’ve learned how dementia has changed my mom and some of the more subtle changes are the things that have taken a while to sink in. For example; mom has a chair in her room that I love. I love it because I’m the one who picked it out for her when she moved here. She didn’t really have a comfortable chair in her apartment so I bought one that I knew she would like. I also got her a really nice hassock so she could put her feet up while she watched the flat screen TV I bought. The chair and hassock have been used a lot. They’ve been used as a magazine holder and a place to stack blankets. A stuffed toy koala that she pulled out of the trash - heaven help me, I just made sure it didn’t have anything nasty on it and let it go - sits on the chair along with a little red dog. She, however, has never sat in the chair. There have been times that I’ve been changing her sheets or straightening up her room and she will either want to sit on the bed or on a white wicker chair that was in her apartment in Illinois and may be older than I am. She stacks stuff on that, too but she recognizes it as a chair. The new one doesn’t exist in her world as something to sit on. And the TV? We’ve gone over the remote so many times. We’ve practiced turning it on and off. It may as well be invisible.
I realize now that unless I repeatedly introduce something new and she is able to take it with her, like new clothes or shoes, she doesn’t see it. All the things that are from her apartment, she uses in pretty much the same way as she always did. But new things are invisible, even though she may look at them, she doesn’t remember them so she doesn’t see them. When she started having issues with getting her days and nights mixed up I was thinking about buying her one of those digital clocks that you can hang on the wall that shows the weather, time, temperature, and if it’s day or night. But then it occurred to me that she wouldn’t see it - it would be one more thing that goes unused because she doesn’t remember she has it.
Today when I went to visit and make sure she got a shower, she didn’t recognize me at first. It’s so odd to have her look at me like I’m a stranger, I didn’t know what to do for a second. She finally recognized me but it was a little unsettling thinking that eventually she will always look at me like she doesn’t know me. I’ll have to introduce myself every time I’m there and then get on with our normal routine.
I was telling Bill about today and her shower antics that are always mind boggling and he said he was sorry it was so stressful. Shoot, I thought I was being funny. Then I thought about what he said for a second; it’s not stressful, it’s heavy. It’s like time slows down and has a weight to it while I’m there and it takes me a while to get back to feeling like myself after I leave her. Many days, I get in my car and I have to sit there for a second. Just sit and be quiet. It’s not sad, it’s not frustrating, it’s just depleting. I know it shows, even when I think I’m ok and I’m retelling the high points of my visit. I’ll just have to learn a few more things along the way about dementia. And myself.