I'm conflicted

GothicGremlin · July 2023

Peggy's been in memory care now for close to two years, she's early-ish stage 7. There have been ups and downs, but mostly she's fit in well there, and she even kind of likes it there. There are definitely a couple of caregivers there who she's really bonded with.

Over the last few months she's taken a strong dislike to eating in the dining room, pretty much anytime there are more than four people in the room, plus the lady she hallucinates. This lady, always referred to as the lady, is going to hit her, do something to me, or take all of her stuff. But there is no one there. I look around the room when Peggy tells me that the lady is right there, and there is no one anywhere near her. Peggy's friend M has seen this behavior from Peggy too - again, there's no one there. But man, if we don't hustle her right out of that room, there will be a temper tantrum like you can't believe. Now at meal times we have her sit right outside of the dining room where she's by herself, but can be seen by staff. It's worked out pretty well, but none of us likes that she's by herself at meal times. Weirdly, she can still be in that room when everyone is there doing activities. So maybe it's something about the way the tables are configured for meals? We haven't figured it out yet.

What I'm conflicted about is that me and Peggy's two best friends M and D are discussing a small group home, and would that be better for Peggy? I honestly don't know. M has strong feelings that moving her at all at this point would be so disruptive to her, and therefore a really bad idea. I don't disagree with that. D, on the other hand, who is an RN, thinks that the small group home would be best, even given the trauma of moving because there will be no more than six people in the room, ever. I can see how that could really lower Peggy's stress level.

Obviously the decision is going to fall to me, and I am truly conflicted. I see the pros of moving her, plus the huge con of disrupting her.

Thoughts on this?

M1 · July 2023

GG my partner loathes being in any part of a large group, including meals, and likes to sit by herself, which the staff has generally accommodated. A lot of times she won't come out at the specified meal time, but they'll save a plate for her, and she comes out later. So I understand that. But ironically, we're in the opppostie situation--where moving from a smaller facility to a larger one with more indoor and outdoor spaces has been very beneficial.

It's such an individualized thing, very hard to know. But we are not as far along as Peggy--solid stage 5 at this point. Tolerating a move at stage 7 is a whole different ballgame.

I don't think I'd move her because YOU or M or D are uncomfortable about her eating alone--I imagine that's projecting a good bit of our own (rational) response to the situation, and if she's not unhappy with it, so be it. I'd think hard about that.

ButterflyWings · July 2023

Hey GothicGremlin - First of all, you are one of the all-time best sisters, ever. Is it just mealtime that troubles Peggy? If so, I think you and M may be right. It really does sound like most everything else is good, is that right? What about the staff and admin? From what I've always read on these boards, you have had little to no concerns about her care and interaction there or the access and communication with you and Peggy's best friends when visiting, is that right?

I would be worried that something in the new environment or maybe 1 of the 6 people might trigger something that bothers Peggy, just like the hallucination she is having right now. We know there is no rhyme or reason or predicting with dementia. Could you take her there for a visit to see how she responds to the space without any discussion of why? And, if you do decide on the move, would it be possible to move her back if it didn't work out?

harshedbuzz · July 2023

@GothicGremlin

I hate to say this, but I get a sense that Friend D, RN is an example of one of those well-meaning medical professionals who is clueless regarding dementia.

It sounds as though Peggy is hallucinating and is delusional. If she is seeing people who aren't there in the MCF, moving her to a smaller setting without dementia trained staff and dementia-informed care probably won't remedy the situation. Her diseased brain is controlling the headcount she is experiencing-- not the facility's occupancy levels. It's very likely that the lady will find her way to the new place.

Given that she's otherwise content and was able to bond with her caregiver team in earlier stages, I wouldn't entertain this idea. Given that she's progressed to stage 7, she will have less bandwidth to establish new relationships with carers and they won't be able to get to know her as well as a person as the current team did.

Medication can help with this sort of experience. Does the MCF have a geripsych on staff or visiting? We had to increase dad's meds in stage 6 because of visual hallucinations; we didn't eliminate them entirely, but we did get to a point where they were mostly benign and even pleasant at times.

Are there windows in the dining area? Could she be seeing reflections or something outside she isn't visually interpreting appropriately? Could staff move a table for her and 1 or 2 other residents away from the area so she's not alone? Do you have enough available friends to have one of them join her from a meal most days?

HB

zauberflote · July 2023

@GothicGremlin as ButterflyWings says, you are the best sister ever. Given that, and that Peggy is doing so well other than the lady, I'd say that a move at Stage 7 would be very difficult for her. I remember Mom in the late stages, and another move (she was "5 into 6" when we'd moved her 600 miles to MC) would have been disastrous. Mom was 92, though, and had no MC friends. I also like HB's ideas.

Time may be your friend here-- the lady may somehow be coaxed to live someplace else, as it were.

Mom only had one visual hallucination that I knew of, and since I was there I was able to reassure her that the little girl was alright, that's why she left. (I'd just changed her briefs for the first time, and suppose that the little girl was my mother...) so, inexpert me says, go with your gut and heart, not her friends' brains (and hearts!, but you're the sister....)

SDianeL · July 2023

some good info here: https://www.alz.org/help-support/caregiving/stages-behaviors/hallucinations

CaliforniaGirl-1 · July 2023

My LO's doctor said that hallucinations are not unusual and there is medication to help.

GothicGremlin · July 2023

@M1

It really is individualized, isn't it?

You're right - this is probably me, M, and D, all using our rational brains on a situation that is not rational. I try to be mindful of this, but I don't always succeed. I'd say Peggy isn't uncomfortable with her eating situation because I don't think her eating situation even registers with her at this point. :(

I'm really leaning toward not entertaining a move unless we really have to for some reason - like her current facility is hit by an 8.0 earthquake. That's pretty much what it would take in order for me to move her.

@ButterflyWings

You are very kind. Thank you. I give Peggy 100%.

I've always been impressed with the staff there. They're so kind to Peggy, and I do feel like she's getting great care. Peggy's eating only finger foods now, and she gets a variety of easy to eat (and nutritious) foods. None of us have ever had any problem with calling her on the phone or visiting in person. So nope, no issues at all with the facility.

Other people at the group home triggering her is a good point, I hadn't thought of that.

My plan at this point is to visit the local group homes and see what they're like. Then at least I'll know what's out there.

@harshedbuzz

Indeed! You have D nailed! :) She's been in denial too - and I can't blame her for that. The great thing about D is that she'll take the time to learn. She's been going to Alzheimer's support groups in Southern California (where she lives). Various people there have educated her, so much so that she's apologized to me a couple of times for being clueless. There was really no need to apologize - I knew zip when Peggy was first diagnosed. We all learn after awhile.

And - best thing ever - she drove up this last weekend to see Peggy in person!! I was thrilled for both of them. Friends since kindergarten. Peggy was so happy.

Yeah, the lady probably will follow her, I hadn't thought of that. In my head the lady is like The Gentlemen from Buffy the Vampire Slayer (the tv show, not the movie). Scary.

And yes, there are windows in the dining room! I hadn't thought of that either, and it's a good point. Thank you for that. There is a geripsych available and we've been working on Peggy's meds, so hopefully we'll come up with something.

@zauberflote

Thank you, you're very kind. I'm definitely there for her. :)

Coaxing the lady to go someplace else. That's a great idea. I'm going to try that starting tomorrow.

I've never thought that moving Peggy was the best idea every, but I was willing to be convinced because I'm too close to the situation. I'm not objective. But I haven't heard anything here that would make me think it's a good idea to move her. Pretty much the opposite. And really, this is about what's best for Peggy, something me, M, and D all agree on.

@SDianeL

Thank you for that!

@CaliforniaGirl-1

Yeah... I know that, sadly. We're experimenting with medications now ...