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PSPS · June 25

Only child caring for 90 YO Mom. Started with neuro last year, and he diagnosed dementia. Didn't really tell much info. She'd had several episodes of people spying on her, trying to break in, etc. We put up cameras, etc and that seemed to stop that kind of thing. That let us know there were things indicative of something going on, for at least a year before that - It wasn't really frequent and we still weren't sure when it would happen if it was wine, or something else going on.

She lives alone, and last year was still driving. When we saw him in March, he said she did not need to be driving. She heard that because, of course, there was an ensuing argument from her after leaving. She has not really been driving since then although she did drive a couple of times since March (she thinks we don't know). Last appointment this week, and he did repeat that when I asked. Of course Mom is saying that I made him say that. He wouldn't have said it if I hadn't asked. Remember, he actually said that back in March. I did find out it's alzheimers dementia.

Anyway, we don't have family left really, and she has few friends left. She's writing everyone she does have telling them I did this, etc. and we're trying to take everything away from her. I'm going to let them know her diagnosis and that the Dr. has said she DOES NOT need to be driving.

This is of course, causing much stress, and I don't really have anyone to vent to except my poor husband who hears it all! We haven't had anyone else in our families who had dementia. Mother's cousin did, but we never lived close.

Because Mom & I always had kind of individual lives, this is hard. We weren't the close type always doing things together. We got together for things, just not all the time and pretty much lived our own lives.

Just needing to vent I guess, and wondering how to get through it all. Already get burned out after full day…

H1235 · June 25

Welcome. The very beginning of this is so difficult. Has anyone been appointed DPOA. This is very important. If you haven’t seen a lawyer I would as soon as possible. Many with dementia have anosognosia. This is an inability to recognize their own symptoms or limitations. If you think she would be hesitant to sign papers, you might want to suggest that it’s something that should be done just because she is getting older. Maybe even tell her you and your husband are doing the same thing. Do not tell her it’s because of the dementia! Because of the anosognosia she will probably not willingly submit to to the restrictions necessary to keep her safe. If she should not drive it is up to you to make sure she doesn’t. You may need to take what feels like drastic action. Take the car, disable the car or take all the keys. Many remove the car in the hopes that if it’s out of sight it might be out of mind🤞. They can also do a lot of financial damage at this stage. The DPOA would allow you get things under control in that area if this has not been addressed. I will add a few resources that may be helpful. Dementia is absolutely awful. I’m glad you found our group.

DBAT.pdf

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

PSPS · June 25

I do have POA, and things like that. Took over her finances a year ago last November, prior to actually seeing a neuro. She got to where she could never seem to pay bills on time, and keep stuff straight that long ago. Thank you for the reading material. One reason I'm thinking of seeing another Dr. is mostly because it just seems this one doesn't communicate things clearly! Would be nice for a little more explanations, etc on what exactly she has, and expectations. He did say at her last test she was 22 out of the 30, but I think that was in 2025 when they first did MRI, & EEG. How often does that get checked again?

H1235 · June 26

I’m glad you have a DPOA and her finances are under control. That’s a big step. Most doctors use the 3 stage model, which is not as helpful in knowing where they are at, in my opinion. Most caregivers here use the dbat staging tool that I gave you. I have never received much information or explanation from any of moms doctors. Unfortunately I think the general consensus here is doctors tent to diagnosis and then you figure it out as you go. Doctors can help with medication for depression, anxiety, hallucinations, sleep issues or other symptoms, but you are really the one that knows your loved one best. Since there is not much that can be done, it’s generally not worth putting your lo through additional testing. My mom has never been back for more testing (it was never even suggested). They do the quick little memory tests every now and then, but that doesn’t really amount to much. My mom has vascular dementia and poor memory seems to be the least of her symptoms. She struggles with logic and reasoning, planning, confusion, anosognosia! So asking her what day of the week it is and her birthday don’t give a true picture of her condition.

PSPS · June 26

Thanks for the insight into testing, etc. I wasn't sure if that was the norm or not. Sounds as though it is. The Dr has put her on Memantine. She's been on 5mg for about 3 months, but he did change it to 10 this appointment. It does seem that she hasn't had as much trouble with TV, thermostat, etc. Most of the time she's been fine working all that, but has had a couple of days where she couldn't seem to operate anything.

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