I’m feeling guilty - second guessing decisions

Hi -

I have the longer story below, but basically, I’m wondering if my decisions for my mom’s care made her dementia progress faster. I know this may not be true, but she’s progressing pretty quickly. She just turned 77. I’ve tried not to, but I’m feeling a lot of guilt about the decisions I’ve made. I apologize. This is very long, but I think I just need to get it off my chest. Essentially, it’s the guilt that’s what’s getting me down today. And her rapid progression. I have a long novel below.

The background-

She’s miserable, and going downhill pretty quickly and I think she could have better care, perhaps but I found the best I could, with her needs and wants, out of the options I saw. As of the last fall, I was still trying to honor her wishes, and I should be doing what best for her as opposed to what she wants. She’s just not going to be happy anywhere.

In August, this time last year, my mom was still driving (she shouldn’t have been), and getting around relatively OK. Then she started to have some falls, and of course, other things, and I determined that she couldn’t live alone. I basically moved in with her, kept my apartment where I live in a different city, and researched and visited assisted living places. I started to prepare for her move, and knowing I would eventually have to deal with a giant storage unit from everything from our family’s home, clear out condo, and sell it. I did all of those things.

I was also unemployed when I first went to see her, and I managed to get a remote, flexible, and part-time job that paid the bills. And I helped pay her bills while I got her settled.

I have two older brothers, but they are not as involved, and it’s hard enough for them to get to show up, much less help. One lives in the town she is, one lives close to me 6 to 7 hours away. His wife is a flight attendant, and he can fly anytime. He usually comes for less than a day and takes her out to breakfast or lunch, and then goes back. I’ve stopped asking him to be involved in any type of admin for her care or anything else. I don’t know if it would be different now.

I was with her 24/7 before I coordinated a move to the nicest place I could find in the area of town that she wanted. It wasn’t good for my health to be with her. I wasn’t sleeping, she would wake up several times a night, the paranoia was intense, and she was so paranoid and fearful over my safety that I really couldn’t go anywhere.

I definitely became “caregiver,” and not Daughter, and that was extremely hard for me. I know it might sound selfish, but the way she treated me was different, and it was noticeable to how she treated everybody else. I know a lot of you might must have a similar experience. It’s very difficult. and now that she has other caregivers, it’s back to a mother-daughter relationship. Even in her impaired state.
I keep thinking if she were well, she wouldn’t want me to go through this.

She was so capable, “good”, in so many other respects, she wasn’t quite ready for memory care. At the time, it was obvious she didn’t belong. Nine months after first entering the facility, she’s definitely there.

Looking back on it now, it was obvious she was probably right on the edge. She had nearly all of her ADLs, but eventually needed help with medication reminders. She had a schedule, and went about her day, and though she was so unhappy. The nurse evaluated her, and other staff thought she fit right in in assisted-living. Even independent.

I was probably deluding myself, but I thought if only she felt safer, if only she had more people around, if only she was getting regular healthy meals, and she participated with everybody. She used to be so social. And when her medication was consistent, that she would improve. I had even moved her to a new condo just the year prior that was more accessible, and in the area of town that she wanted. It was, beautiful, and safe. The neighbors were lovely, and everybody watched out for each other. However, she didn’t feel safe.

In the assisted side, she was miserable. She didn’t really get into any of the activities, and constantly wanted to go back and “buy a condo”. It was impossible for her to live alone, I needed to go back to work, and to where I lived. I had gotten another part-time job in the meantime to help with bills.

I knew memory care was on the horizon, but she moved in only 5 months later. She was adamant about not wanting to go to memory care, and it was traumatic. I don’t know if she’s in the right facility, - it’s the unit attached to the assisted living facility - but it was an emergency decision at the time.

I was finally able to tour a different, and supposedly better facility, with a better ratio, and supposedly better care, but I just don’t see her there. The residents are different, with not a lot of ability, and the facilities are very old. Even though apparently they just got updated.
I like her how her care would be overseen by a nurse, and not a memory care director overseeing care, staff.

However, where she is now, I don’t know if she’s getting the level of I think she should. The nursing ratio is low, but out of all the places I toured, it is definitely the most least depressing. Every time I go, it seems that the caregivers are very good. And it seems that she likes them. I do not like the memory care, Director, however, and it seems like at least one other family feels the same way. However, of all the memory care facilities, I’ve toured, it does seem to be better than others. It’s damned if you do, and damned if you don’t.

My mom is significantly worse every time I see her. I go once a month for about five days, and lots of other friends and family live in the area. With her decline, it’s not enough. I’m considering moving to the town she’s in as opposed to move her to where I am.

There are lots of reasons for that. I love where I live, but I have more family there, and I know I’ll need even more support very soon too. I need to find a new job right now, so that’s why I’m hesitating to move her here. And I know she’d like to stay in Spokane. With the rapid progression, I don’t know how much longer she will have.

Also, she’s not in a “two year spend down” place for Medicaid, but when I ask the doctor, they’re estimating about one and a half to two years. I know there is no formula for this, but her decline is feeling extremely rapid. Her type of dementia is unspecified, and I haven’t been able to get her into a neurologist. That’s a whole other story. I don’t have a level, but I’m guessing at least a 5.

her cognition is declining every 3-4 weeks I see her, and it’s noticeable over the phone. She’s on a walker now and cruising around, but still losing mobility here and there. She’s had some minor falls, but I had to take her to the ER for a fall this past week when I was in town for a week for her birthday. I have a brother who lives there, but it was hard enough to get him to show up at the ER to relieve me for an hour.

I always said that eventually I would move her close to wherever I am. And that time is now. I guess the thing is, I don’t know where I’m going to be. But the town she lives in is seeming like the more logical choice, at the moment, since I’m in this job transition.

In another very helpful thread, somebody said to consider what’s going to happen in the 8th stage. For me. I love the city that I live in, but I think I’m actually more stressed and depressed here, and less stressed and depressed when I visit there because I’m taking care of all of the things that make me stressed and depressed.

I’m also preparing for grieving, and of course, grieving now, and I’m trying to find some counseling to help.

I can’t help but wonder if her quick decline it’s because of all the decisions I’ve made leading up to this, but I also I think it might’ve happened this quickly no matter what I did.