Mom, Daughter, Health and Wellness Enthusiast, & Caregiver
Age: Early 60s
Care Role: Primary caregiver. Lives with Loved One.
Age: Early 90s
Diagnosis: Dementia, not specified.
Progression: Lives with daughter. Diagnosed 5 years ago.
My mom is 91. As far as a diagnosis, that kind of trips me up. She hasn’t had an MRI. There hasn't been a specific diagnosis. I’ve been here for five years now. About five years ago, my mother came to visit me and we went to a restaurant for dinner. She was really fumbling. She couldn't figure out what to order. She said she would pay and then could not seem to figure out how to pay for something. My daughter was sitting there and she said “oh my god, what’s happening with grandma” and she ran to the bathroom in tears. The visit she could not tell me what she wanted to do and yet she seemed upset when we were not doing something. My mother was a salesperson. She was great at talking to people. When I moved up here people said to “oh, i love your mom I haven't seen her in a long time.” I realized she had been withdrawing. I’m not sure if that was indifference or she started forgetting who people were.
When I got here and I really started to see things that were being left behind. Her driving being more erratic. She got lost. We went to the doctor for her regular checkup. She fumbled questions that should be easy. The doctor said : it's time to have a conversation about driving. That just started things out. Then suddenly, she didn't like that doctor anymore.
My mom went into a decline in her 80s. Her mom had been hearing impaired from a very young age. I noticed that her hearing was getting really bad but she refused to get it checked. That’s something I'm really sad about -- I know that there's a correlation between hearing and memory. I don't know how else I could have handled that, when somebody is unwilling to go.
Legal and Financial Planning
I wish I had a little bit more of a directive. I wish I had more structured planning ahead of time,, while my mom was still more cognizant. We did get her little home in my name. I started paying the taxes, the insurance. I wish I had done power of attorney ahead of time.
It was horrific. So, the doctor said she could not drive anymore. My mother was luckily having a few problems with her car. So we were having conversations around, what do we do? Do we spend some money on this car? It needs to be safer if she's going to drive it, but she really shouldn't be driving. She was furious. I’d never seen my mother angry like this. It was frightening. She demanded “give me those keys back.”
When she got angry like that, I just had to walk away. Then, it did get to the point where the car was really broken. The battery died. We got a bit of an out saying “the car isnt working and its expensive to fix…” and she just sort of accepted it and gave it to my nephew and that made her feel good. It was a very tense situation for a while but when the car was out of our driveway it was easier. And, fortunately, she would never be seen driving in my car so won’t ask about driving it. And, fortunately, she’s happy having me drive.
Driving down to the grocery store - two, three blocks - was her thing. I would have loved for her to be able to continue to have done that a longer. But all it takes is that one moment. You can hurt yourself or someone else be a block from home or a mile from home. It was hard to let go of those grocery trip. But I continued to bring her whenever she wanted until she isn't looking to go anywhere.
She sleeps most of the day. She sits and likes to organize and reorganize things in her room. So I guess if there's an activity that’s it . She's fascinated by the beads that I use for my work. But no scheduling anything. We live near a senior center and when I tried to get her to take a class, she was clear - “no!”
Frankly, my mom worked. She didn't have any hobbies. I would tell anybody- make sure you keep yourself busy doing things other than work. It's a good pathway as you get older to still have some ability.
Last year, I bought what I thought was a simple puzzle. But it was 200 pieces. It was way too complicated. While my brother and I did it, she would maybe look at it. She wasn't willing to or wanting to engage. She didn't touch the pieces -- something isn't clicking. Maybe there would have been some things that were valuable to do earlier while she was still showing interest. Before it seemed like a crisis and she couldn't do anything.
Personal Care and Day-to-Day Stuff
She looks disheveled most days and she doesn't connect with us -- she doesn't smile or talk or lock eyes. But about a month ago, she was watching the TV and they showed Biden winning the presidency and there was confetti and fireworks and I don't know if it was the visuals or if she understood but she smiled just for that moment. She clapped. I took a photo. That never happened again. But she clicked in for that moment.
I wanted to get her sleep schedule back on track. I'm waking up in the middle of the night too often. I want a more structured schedule so I could schedule some help with showers, etc. I am terrible at showers.
The idea was for me to come here, live with her and stay with her and keep her in her home as long as possible.
I feel like all I'm doing is stumbled bumbling my way. Some of these caregivers seem so organized. I don’t feel like I am. I’m here every day with my month. I am trying to get her back on a schedule of sleeping at night. It's been a miserable failure, like a horrible failure. I’ve tried to think where I could add to other caregivers and I’m not sure.
I try to be in the moment. fail miserably many times. Just lowering expectations for her and me.