Disease suddenly progressing quickly

4Mickey

At the time of my dad's diagnosis a year and a half ago, he was living alone, still feeding himself, paying his bills, and maintaining his garden. About 6 months ago, he fell a couple times and started doing some troubling things, like trying to light his pipe from the stove with random things around the house. Even though My sister and I had gotten an aide to come to the house 3 times a week, we didn't feel like he was safe alone there anymore and moved him into an assisted living facility. Admittedly, I knew the move was probably happening sooner than absolutely necessary (he was even assessed at a level 1 out of 10 in terms of care needs), but part of me felt like it would be good for him to be surrounded by other people since he used to be a very social guy. I kept reading about how isolation makes the disease move faster, so I was hoping we might even see some improvement. However, the very first day, he was awake most of the night asking the front desk to call him a cab, so they moved him to memory care because he was a "flight risk." He was not even remotely close to being as far along in the disease as the other memory care residents, so my sister and I were scared it would be bad for him, and it turns out we were right. We are absolutely shocked how much the disease has progressed in such a short time. I know it's normal for big changes to trigger a progression, but he now has trouble walking, is on a puree diet because of choking, and has recently become sexually aggressive. My sister and I now take turns feeling terrible because we were trying to make things better and instead made them so much worse. I don't know if we should've left him at home longer, fought to keep him in assisted living, paid someone to stay in his house 24/7 or what, but it all feels so bad. Is it normal for the disease to progress so quickly under these circumstances and for everything to feel so wrong constantly?

M1

Hi Mickey. Impossible to second-guess. It may have happened anyway, so try not to beat yourself up. Certainly you were entirely right that he was a safety risk to remain alone. Have you looked at whether he's been put on medications that could be adversely affecting him? Worth the question at any rate. If he's been sexually aggressive, they may not tolerate that in MC and he may need a hospitalization to re-evaluate anyway. This could lead to change in medications, and/or it could lead to more progression, even Hospice (he may qualify if he's having trouble walking).

I'm so sorry, it's all heartbreaking, all of it. You're assuming your actions made him worse, but that's not at all clear.

harshedbuzz

@4Mickey

I am sorry you are second guessing yourself here.

You absolutely made the correct call to move him into a safer living arrangement given his falls and poor judgment in using the stove.

Each person with dementia will seem to have their own unique rate of progression. My favorite auntie lived over 15 years with obvious memory issues before passing. My dad was diagnosed in August of 2016 and died in April of 2018.

The month before, he'd driven from FL to MD but his judgment was off-- a few months prior the local hospital called me as mom's emergency contact because she was critically ill and dad was MIA (they knew he wasn't firing on all cylinders). After visiting mom in the hospital, I went to their house and found dad entertaining neighbors for happy hour wearing only a bath towel. The next day he crossed poles jumpstarting a car and put a fork in the toaster in the space of 10 minutes.

HB

CarolynATL

I feel you, and I'm so sorry you're going through this. This is NOT your fault. You and your sister care so much that you're doing the best you can. We all rely on the suggestions we're given in a vulnerable time. You've received some good advice above, so I'll just add my two cents about living arrangements. My dad has been at 2 facilities, and both of them worked with me and didn't want to move him to MC too soon. They explained that being in an area with others who are not at his progression level (mobility, ability to speak, behaviors etc...) can have an impact. My dad is currently an AL/MC facility that has a bridge program for people who fit right in the middle - needs a secured space but not ready for MC. *If* you do end up looking at other facilities, there might be a similar one in your area.

Best wishes to you and your dad.

vanlinks99

My mom is diagnosed with ALZ about 3 years. Last month she had a turn as turns crazy as she gets emotionally and talks to herself all the time. Just like today don’t know confused with toothpaste n face cream. Started the lineup with government run long term care home still 12 months away. I know this going gets worst any time. I try to remember a month ago, she was kind of ok and seem she went downhill very rapidly.

Feels so depressed.