Trying to Do What is Best

NizhoniGrrl · September 12

We are about to hit the wall with rehab discharge and getting my mom into AL instead of letting her return to her IL apartment. This is going to be very hard since her perception of her abilities and safety issues does not align with reality and she is itching to get back to her bridge games and friends. She has a left arm cast (she is right handed).

I have two choices: AL at the same facility as her IL apartment (across the parking lot), and a brand new AL (I'm looking at 4 options in the next 2 days).

Since she has been eating properly (low mastication diet), kept properly hydrated and been on a managed schedule sleeping at night and being woken in the morning at the same time, she is doing great. Much more lucid and talkative than she has been in ages. This is clearly the structure she needs. She probably fell because she was dehydrated and her blood pressure dropped. Here are the pros/cons that I am weighing:

Same facility AL: PROS: Hypothetically she can see her friends periodically and maybe even begin to get back to her bridge games. Easy move for us to accomplish. Less stress for me! CONS: She may become fixated on moving back into IL after the cast is off since she does not recognize that she needs a special diet, to be offered hydration regularly, meds managed more than once a day, and people to wake her in the morning (and give her sleeping meds at night). TBD if she'll continue to need help dressing and bathing once the cast comes off. Also, it's not a prison. She can just take off across the parking lot any time, which isn't safe since she'll continue to be a fall risk.

New facility AL: PROS: Only looking for places with medicare beds, for when her LTC and money run out (4-5 years I estimate) and could avoid a second move. No reminders of her missing out on her old freedoms and access to her card games. I know the administration and they seem willing to work with us on coordination and maybe even cost. She won't be able to just walk over to the IL building whenever she wants. Maybe I can find a place slightly closer to us. CONS: It will be a bigger pain for me to manage and decision to make, she'll have a harder adjustment period making it harder on me and we might not be able to find a place with access to bridge games (basically the only thing that gives her pleasure right now).

Even typing this out makes me realize I'm leaning towards staying at the same community knowing she might need to move again for the reasons stated above but at least it could be on our own timeframe. Making these decisions with a gun to your head is so hard! And also her overconfidence in her abilities and desperate negotiations is breaking my heart ("I'll wear one of those fall pendants!" "I'll ask the servers in the restaurant to cut my food." "The bridge ladies can check on me." "If I need help in the bathroom (poop cleanup), I'll just wait until the person comes in the morning."). I'm so, so tired! And I realize this is the quiet before the storm.

So, devil you know or devil you don't?

sandwichone123 · September 17

I don't have comments on the decisions, just on the bargaining. My dh also did bargaining (I'd almost forgotten—it was 2 years ago) when he first moved into memory care. I found that the most emotionally stressful of all the myriad of emotional stressors. I'm sorry you have it also.

Victoriaredux · September 18

If she's had MCI for 10 years , are you sure AL will give her enough oversight? Or do these places act like MC but call themselves AL as a marketing thing?

Maybe consider the best one -move -and- done care place so she gets the medical oversight now while she heals up and they'll keep her from roaming .

You can look for bridge players later because at some point she'll lose that ability sad to say . If she can keep that ability for a while - will be easier to hire someone to take her to the table and back for her games . [I'm assuming she really does play bridge - it seems pretty complicated for someone who can't handle her meds etc. A caregiver could play other games also.] Good luck.

NizhoniGrrl · September 18

Her old facility made it impossible for us to go back. It would have required a week or two waiting with her in Independent Living while they did the paperwork. She just moved into the AL next to the rehab. I couldn’t believe how high her care level was but she was excited that they have bridge, happy hour 3 days a week and lots of activities. She thinks this is temporary, and she can keep thinking that. We’ll see how she adjusts. The memory cares I’ve seen don’t seem right for her yet. Super quiet, no one talking, just blank stares. The bridge part of her brain is pretty hard wired. And she likes to go to activities even if she is just around people talking and having a good time. I heard this place keeps people even with memory issues as long as they aren’t wandering away or aggressive. But she’s not going to make it easy with the toileting nonsense. So we’ll see if it is a good fit or not. I just need it to work a few months at least so I can recover from all the recent extra work and stress. If it’s not working out, I’ll start the research again and hopefully not do this in a crisis.

housefinch · September 18

I would really wonder if she’s actually playing bridge accurately. My PWD still “does Sudoku.” We eventually looked in his Sudoku book. There were countless errors. He is a retired high level professional.

harshedbuzz · September 18

I would move her to the place where she can age-in-place.

I highly, highly, highly doubt she's a competent Bridge player if she can't manage meds. If her cognitive impairment impacts her playing, she will likely be dismissed from the group. She may even be accused of cheating. IME, the elders in AL are less inclusive of PWD that the general population. My dad and mom became social pariahs among neighbors because they felt dad was cheating at Euchre. It was a relatively new game for him, but eventually he lost the ability to play Poker or even Gin Rummy.

My aunt went to AL when family members with "loving eyes" felt it was a better fit for her. She was bullied by the other ladies in the group because she couldn't keep up with their conversations or activities.

The level of oversight in a hospitality-model AL might mean a daily well check and meds handed out. These are not secure (locked) facilities, and your mom could elope without anyone knowing for quite some time. My above-mentioned aunt fell and broke a hip. While this could have happened in a MCF as well, she wasn't discovered until her evening meds by which point she'd missed at least 2 meals meaning she could have been on the floor for upwards of 20+ hours. She was wearing a pendant call button but didn't call for help.

Moving her now will make it easier on her than if she has to move again in a more impaired state. It will allow her caregivers to get a better sense of who she is if she's still verbal and engaged to some degree.

Many facilities that accept Medicaid operate on a business model where families self-pay before moving to a Medicaid bed at a lower rate. If you wait, you could potentially be shut out by the nicer MCFsif you move her with less than 2-3 years self-pay.

Dementia-informed care from dementia-trained professionals will ease her transition and yours.

HB

NizhoniGrrl · September 19

If she's not able to play bridge, then the ladies from her bridge group who stopped me in the hall of her IL while we were moving her to the smaller apt (less than a hour before her fall) were lying to me. They told me how much they enjoyed playing with her and that it was good for her. I do think that dementia can destroy abilities selectively before it advances too far. Just like the long story she told me about discovering her penicillin allergy in the 1950s which I had never heard before, and yet she could not tell me if her cousin had called her the day before. Her CT scan report indicated moderate to severe atrophy, which seems substantial to me. And yet…bridge. Of course she can't play one-handed with her cast on and I wonder if after 6 weeks of not playing, after playing 3 times/week, might mean she will have trouble picking it up again when she has the opportunity? It will be devastating for her when she does lose the ability to play.

H1235 · September 19

My mom has made some amazing quilts over the years. We wondered if she would really even use her sewing machine if we brought it to AL. But she has made some very complicated quilt squares. I don’t think she will ever be able to put it all together as a complete quilt but still she is enjoying it. It is strange what goes and what stick. I hope she can continue to enjoy the card games for a while longer.

Face · October 21

https://alzconnected.org/discussion/comment/223249#Comment_223249

Your situation is so difficult. I can understand how you believe her bridge abilities are real. My DH has had STM for 14 years now and can still remember how to do things that are hardwired. Many folks retain abilities for a very long time. This past year i have observed new mental difficulties than over the past 13.
You know your loved one the most. Trust your instincts, BUT consider your own mental and physical needs for the long run. Mine are beginning to ramp up and i admit to being afraid.
hugs to you.

Quilting brings calm · October 21

She’s moved into an AL next to rehab that she seems to like? Leave her there. In the meantime, check into the other places for future reference.

Trying to Do What is Best

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