Living options

notcopingwell

I'm a frequent lurker, and have benefited immeasurably from the experiences and advice on these boards. Apologies for the long-winded question; TLDR, I'm struggling with a question about the best living option for my mom.

My mother (71) had been having increasing trouble caring for herself, and was diagnosed with moderate dementia (no specific type). My brother had taken over her finances in the summer of 2020, and took her car keys in November 2020, and her lack of attention to health concerns had me move into her home from out of state for two months in late 2021. I arranged for daily caregivers for when I had to go back home, until we were able to get the guardianship in place to move her to a great assisted living place* I'd selected in the second half of March 2022.

*Because she and my brother both live in Ohio, he is the main/financial guardian, and I am co-guardian of the person, and we only have rights granted in Ohio. I've tried to find information on how to potentially move her closer to me, but our elder attorney doesn't have knowledge outside Ohio, and elder attorneys I've identified in my state only have knowledge here...no one can seemingly advise us on the transfer. This seems weird.

In early March while I was remote and her daily caregivers unable to perform wound care (and seemingly didn't really check), my mom ended up with infected leg wounds resulting in cellulitis that spread and almost killed her (thanks for refusing home nursing, PCP). She recovered in the hospital, but refused to get up out of bed. She says she's lazy, but insists she can walk if she wants. I worked with the hospital social worker to get her released to a rehab center with physical therapy, which she refused to participate in. After the rehab discharged her for refusal, she went straight to the assisted living (they were confident it'd work out fine with their therapist). Surprise, surprise, she's also refused therapy there. The therapists all said she had plenty of strength; she just was not willing to try. We invested in a hoyer lift and reclining wheelchair for her to allow her to still get out and go to the dining room, or participate in activities; however, she is extremely resistant, and so aggressive to the staff if they try to move her, that they do not use them. The physical therapy at assisted living has also now stopped due to refusal. Essentially, in early March, she became suddenly but completely bed-bound.

From her bed, my mom has not benefited from any of the social aspects of the AL. She's been alone almost all the time (people change her or bring her food/meds, but don't have time to spend with her). I speak to her daily on the Echo Show I got her, which is nice because she can see me and vice versa. However, me calling after work is not a lot of social interaction. My brother rarely visits if at all; he's struggling deeply with depression, so I can't count on him to fill this role. I've hired a couple local ladies to visit for a few hours, a few times per week, purely for socialization. I believe that has helped her state of mind a lot.

However, I can't help feeling it's not an ideal living arrangement overall. The AL she's in has a lovely memory care on the third floor; however, they've repeatedly told me she's not a candidate for that, because she's not a flight risk. Unless you talk to her for a little while, you may not realize how profoundly she's affected by dementia at this stage, and they don't. They don't even seem to know that the "sweet smile" she'll flash them when they're trying to get her to do something to get her changed is her way of saying "#$@& you." Honestly, I don't know what advantage memory care will have for her at this stage, if she will not leave bed.

We were able to visit over both Thanksgiving and Christmas; she's safe and taken care of physically, but it's clear that her only social interaction is me and the ladies. She's declined cognitively and memory-wise through this year (I know that she would decline anyhow), and has never adjusted to being at the AL (persistently thinks she's been there only a week or two--insists it's April, and mocked me for all the Christmas gifts I brought her).

My question is whether this is a workable situation for her, or whether memory care or skilled nursing would be better. Her physical health seems fine, considering; I just don't know if one of the other situations would be a better fit for her social/emotional support. I'd be interested in moving her out closer to me, so I could do the in person visits, but haven't been able to identify anyone with expertise with transferring guardianship across states, and whether primary guardianship would have to switch between my brother and me, and what to do since her assets are tethered to Ohio...

Plus, I know moving her would be very disruptive and unpleasant for her... I'd only want to do it if it'd definitely benefit her. Unfortunately, I don't know enough about memory care or skilled nursing to know whether those options would actually result in better support. The main benefit I can see would be if I could regularly visit her. Moving away from my job and family to be near her in Ohio is not an option long term. The mood at my company has turned sharply against remote work compared to when I was in Ohio last fall arranging for a safer situation for her. Similarly, if we moved her to our house, there'd be nowhere to put her, and she'd need daily care while we work or take care of the kids' stuff. Plus, how would we get her to appointments, if we can't get her out of bed? In the AL, medical care goes to her. There is also the nagging worry in my mind that as much as she's been cheerful and kind during our calls over the past couple months, that she doesn't ACTUALLY want to be with me. She was very unhappy with me living with her last fall. I try my best, but I do get stuck and panicky if I feel I'm unable to fix something for her, which I'm sure she can sense. Still, she does always know who I am when I call, and asks about my kids, etc.

I love my mom. I want to help her be as happy as she can be for the life she has left. I'm just not sure how to evaluate the options. Thanks if you've read all this!

jfkoc

When you say guardian are you meaning named agent in a Durable Power of Attorney?

harshedbuzz

My aunt was guardian for her older sister. She obtained emergency and then permanent guardianship in ME initially and then applied in MA before moving her there. There were court hearings in both states.

Iris L.

notcopingwell wrote:

 There is also the nagging worry in my mind that as much as she's been cheerful and kind during our calls over the past couple months, that she doesn't ACTUALLY want to be with me. She was very unhappy with me living with her last fall.

One aspect that I think is not well acknowledged is that PWDs lose the ability to initiate activities.  She probably needs someone standing by her to help her engage in activities.

It is a challenge to discuss "being happy" in the context you mention.  Your mom was having difficulty in making sense of her world and navigating minute-by-minute with dementia.  Of course, she was unhappy!  At times, a PWD will have difficulty, and believe that the other person in the house is the cause of their difficulty.  Of course, this is not true, but that is their perception.  You have to  learn to accept that their perceptions will be altered.  Most PWDs have anosognosia and are not aware that they have changed or how they have changed.  You have to learn work-arounds.  Happiness will be in terms of keeping her world small and unchanging, since she cannot change too much herself.

You have to consider your lifestyle and needs.  Do whatever is necessary to make things work out.

Iris L.

notcopingwell

Thanks very much for the replies. Maybe it's the time of year, but it's hard to give up on wanting to make her life better. I just don't want to inadvertently make things worse by jumping into an unknown, hoping it'll be better.

jfkoc: Unfortunately, while my brother and I know my parents put together paperwork including wills, POAs, etc., my father passed away in 2016, and by the time we realized what was up with my mother, we were unable to locate any of the paperwork. Furthermore, her neurologist declared her incompetent before we were able to get any new POA arranged. Hence, we had to go to court for guardianship. To my understanding and based on the training I went through in Ohio, that is granted specifically for a single state.

harshedbuzz: Thanks for the example of your aunt applying in MA while her sister was still a resident of ME. That would seem to be the best option; such that you could get the legal part in place before making a move. Our Ohio attorney suggested I could apply for guardianship in my state six months AFTER a move, and it would probably work out. I would hate to initiate a move and then have it NOT work out and be in the situation of having to undo things...or possibly be in trouble for bringing her out of Ohio to begin with. The attorneys I have spoken to locally have demurred, asserting that they don't have expertise on the currently enacted Ohio guardianship.

Iris L.: I understand that my mom is not at the stage where she will take it upon herself to start or even join an activity. This was one of the reasons I liked the current AL; I talked to them at length about how she would enjoy activities if she would participate, but that if asked whether she wanted to, she would say no. They discussed how they have training and experience with this, and have practiced speech patterns that are more successful, e.g. "Come along with me--it's time for music in the lobby." Of course, with her bed-bound, they don't have any opportunity to do this. You raise a good point about how to judge happiness. Perhaps my hopes are unrealistic that she can have the level of social support that I had originally envisioned prior to her infection and stopping all walking, and more importantly, perhaps that wouldn't even be what she'd enjoy at this stage. It's hard to give up the image of her as the hyper-social lady she always was. Certainly after my father died, she complained constantly that she never wanted to live or even be alone. I lobbied for years for her to come move with or near us, or even stay for a couple months in the winter when her friends would travel to Florida, and she always said no--she wanted to stay near her friends and my brother in Ohio.

CanyonGal

I have some of the same problems. I would like to bring my mother to where I live, different state, and lawyers on both states only know about their state laws. I would assume that I would have to file for guardianship in my state in order to bring her here, but I have read that her current legal documents would still be valid. 

I think if you file for sole guardianship in your state that your brother would have to be okay with that change. 

My mother after surgery, and then developing urosepsis in rehab, another hospital stay, because of the sepsis, and back to a different rehab stopped participating in Physical Therapy. We moved her back to the Assisted Living facility and her PCP set up PT there, which she declined to participate in, so it was stopped. She also had stopped eating and declined to participate in activities. Seclusion in her room, only seeing the aides when they checked on her or brought her food which was not being eaten. IN ORDER for her to have someone to encourage her to eat and spend time with her, the facility suggested the move to memory care. (Nothing was mentioned about her being a flight risk, even though she had wandered a few times before surgery, but never left the building.) 

When my mother was in Assisted Living I did hire a caregiver for socialization - take her to the store or just a drive in the car, companionship a couple of times a week and it helped her mood. Unfortunately, the caregiver quit for full time work. But if you have the funding, and your mother is receptive, hiring a caregiver for companionship might be beneficial. The caregiver might even coax her to walk, or use the wheelchair.

notcopingwell

CanyonGal: it certainly does seem like we've encountered some parallels--thanks for sharing your experience. I'm glad the extra caregivers helped in your situation. At first, I'd explored a couple home caregiver companies to supplement in AL, e.g. Home Instead, which had helped out with daily caregiving before the AL. However, I was really looking for true companion services, as the AL staff does the basics (laundry, feeding, washing, changing). Even for that level of care, home care companies were quoting very high hourly rates--similar to the full dementia care hourly rate I was paying when that was the full solution--and long minimums per visit (4 hours). I thought that might be too long for my mom at one stretch, and she'd be irritated. The informal caregiver visits I arranged instead with ladies to play cards, do puzzles, and chat (more like an hour or two at a time) seem to work out well for now. One of them does frequently mention trying to work up to the wheelchair, but for now I'm trying to have her focus on relationship-building so my mom doesn't shut her out. I'd love to see her get there, though!

Out of curiosity, did the move to memory care have a positive impact on your mother's eating and engagement?