Not adapting well to memory care

Merla

My mom who has stage 4 Alzheimer's moved to memory care a couple of months ago. She went to memory care after living with family for a few months after she could no longer live alone any more.

She doesn't seem to be doing well after 2 months. I'm confident that this is the best memory care place within 1 hour of my sibling. However she isn't doing well emotionally. What i noticed was that the structure of the memory care facility improved her cognition after a couple of week and this is when she started to hate the place and all the people in it. What is hard for me to hear is that her complaints are somewhat valid. She can tell the other residents are impaired and have major physical and cognitive limitations. She finds this scary. She thinks the activities are childish and boring. She thinks the state of other residents is depressing. She thinks the place is a dump because there is no technology or internet. She says she has nothing to do all day so lays in bed staring at the ceiling and is going crazy and would rather die than stay there. She sounded very emotionally unstable recently which I alerted the staff to.

prior to coming to memory care she was more or less happy with periods of anger or frustration. Now she seems totally despondent and focused on getting out of there to go absolutely anywhere.

Her emotional state and lack of engagement makes me question my decision of facility. Maybe she could have done ok in assisted living with a caregiver. She is kind of in the in between stage of dementia where some assisted livings won't even take her and I didn't think assisted living would provide her with enough support. But she is less impaired than most people in memory care.

I live out of state so I haven't seen this facility in person but did see a location by me which was great. I'm also questioning if she should have come and lived by me since I could monitor the situation more closely but I had thought it was a huge plus that she has a network of family where she is and multiple people willing to support her. Where I live it's just me and my family and we're far away from everyone else.

I am just really disappointed. Early on she actually liked the place. And then it all went downhill seemingly as her cognition improved and she could see the place for what it is, a facility for the elderly cognitively impaired population. I didn't necessarily expect her to love memory care but I did expect her to be engaged in activities for most thr days and not to be totally despondent.

We have a care plan meeting with the facility this week so hopefully this will help. I'm also going to start looking into getting her a long term companion caregiver to take her out.

H1235

My mom is stage 4 and in Al. I am surprised at the amount of freedom she is given. When she didn’t want to take her medication I was told they can’t force her. I’m not sure how much they tried to convince her(thankfully it was not a critical medication). When she was very unhappy about being there and wanted to go home, I was told they cant stop her from getting on public transportation(medication is helping with this). She also believes she doesn’t belong there and is perfectly fine to live on her own. She should be wearing compression socks daily, they are supposed to remind her, but if she doesn’t want to then she doesn’t wear them. When she wanted a toaster oven for her room they said fine. She wanted a full size toaster oven so she could bake cookies(she’s diabetic) and make some of her own meals. She has a choice for each meal and seldom chooses a diabetic friendly meal. I struggle with all this, but I think for now she is still safe where she is at. I’m just pointing out that Al does come with freedoms she might not be able to manage depending on her specific symptoms.

sandwichone123

What would she be doing during the day if she were at home? Is there a way to provide that to her in her current setting? When my dh was in assisted living he had his computer and was able to play his favorite computer game for a long time. I would have to go change the password or get him set up again every few months (later weeks), but he could play the game on some level and really enjoyed it.

Quilting brings calm

We cannot make them happy. All we can do is keep them safe. She is safe. If she’s too impaired for AL, MC is the place for her. It’s sad, but it’s the best you can do.

Merla

https://alzconnected.org/discussion/comment/238704#Comment_238704

so this is what I'm questioning and it's made worse by her dislike of the place along with well meaning criticism from other family members. Does she belong in memory care? She is on a memory care with a program for people at her stage but they are mixed in with the general population. I really wanted her to go to a place where they had separate floors for different stages of dementia but this is rare. I found it by me but not by my sibling.

At the time of facility selection I didn't think she would do well in assisted living but she isn't doing well in memory care either. …

it makes me feel guilty to hear family say oh she doesn't belong there and that she should be in assisted living as if this were the answer. Or things like oh she worked hard for her money. She deserves better. And it's true she does deserve better but at the same time what would that better be?

hiya

To me, stage 4 was hard. Physically, most are still ok. Cognitively, they are not. It’s that in between situation where they maybe too far gone for AL (fear of them leaving and getting lost), but not enough for memory care. I think I would talk to memory care staff and see if they have any recommendations. If financially ok, a companion. Maybe your mum might see the companion as a friend and they could leave the facility for coffee etc. it’s so difficult as caregivers knowing what to do and then questioning our decisions. You are coming from a place of love. Hoping you get some clarity at yr next meeting.

harshedbuzz

@Merla said:

so this is what I'm questioning and it's made worse by her dislike of the place along with well meaning criticism from other family members. Does she belong in memory care?

Well, she wasn't safe at home. She wasn't happy staying with you and your young family. At the time of admission, staff wrote off AL as an option.

The middle stages are hard. A PWD can seem, at times, to have one foot in the dementia world and one foot out and that can make you want to second-guess the choices you've made. But care needs to be appropriate for your mom when she's struggling and not aspirational in hopes she'll rise to the occasion. Family who aren't intimately involved with care and decision making can be a real PITA for those of us making the difficult choices. I had an uncle who did a 45-minute drive-by every 6 weeks or so who played devil's advocate every time he saw dad.

She is on a memory care with a program for people at her stage but they are mixed in with the general population. I really wanted her to go to a place where they had separate floors for different stages of dementia but this is rare. I found it by me but not by my sibling.

This set up would be pretty unusual. Did you actually observe this in action? On what basis do they decide who gets placed where? Loss of speech? Incontinence? Ambulation? How they look to others?

I can't fathom how this would work. Some PWD, vascular in particular can have sudden downturns and those PWD who have significant illnesses or fractures can skip over entire stages. The only thing close to this I saw, and I live in a community with scads of CCRC and MCF, was one place that requires incoming residents to be self-pay for 2 years on admission. Their Medicaid dementia-care residents (and a few self-pay who need skilled care) are in a different building that is a dementia-SNF with later stage residents.

At the time of facility selection I didn't think she would do well in assisted living but she isn't doing well in memory care either. …

My aunt was in a similar stage to your mom when she went into MC. Because her social skills were still good and because she was very sweet natured, they included her in the AL activities and outings during the day. She'd head over after breakfast and then return to MC before dinner. This worked well for a couple of years.

Another option would be to hire her a companion visitor. I don't know that I'd OK trips out of the facility at this point, but once she settles that should be OK. A number of folks at dad's MCF had aides who visited as companions.

it makes me feel guilty to hear family say oh she doesn't belong there and that she should be in assisted living as if this were the answer. Or things like oh she worked hard for her money. She deserves better. And it's true she does deserve better but at the same time what would that better be?

If you're certain that a better facility exists near you, than maybe you could consider a move. If she's near your sibling to be nearer the family providing opinions, this would give them something else about which to complain.

HB

Merla

there are two facilities by me with a floor of mild to moderate dementia residents. This is ideally where she would be. I felt 100% confident of either of these facilities by me. I felt like my mom is at the best facility within one hour of my sibling but that it's not as good as the ones by me.

However I really don't know how to weigh being by her siblings and parents who she actuslly sees vs being at a better facility by me where it is just me. My sibling is now hated by our mom so he is having a difficult out time navigating this. I don't love being criticized by her siblings but also really appreciate that they are doing the actual work and spending time with her.

I am going out to look into a companion caregiver to take her out a couple of times a week.

I wish I knew if assisted living would take her. It's basically a gray area. Some will, some will not. She refused to go to an assessment for an assisted living place near my brother. The assisted living place by me with two tiers of memory care said that it depends on the facility if they would place her in memory care or assisted living.

Regardless the facility my mom isn't doing a good enough job with engaging my mom. The care meeting was ok but I need them to engage her and gain her trust.

H1235

https://alzconnected.org/discussion/comment/238757#Comment_238757

You might be able to get the current mc facility to send care need’s paperwork to a potential new facility. The new facility could then use that to roughly determine what she would qualify for. You may even be able to show it to them. If she is depressed and mad(my mom is the same) what is the medication situation. Could antidepressants be increased? We want our loved ones to be happy, but I’m not sure that’s always possible with dementia. I can’t help but wonder if you are chasing an unattainable happiness( grass is always greener kind of thing). You should also keep in mind that change can be difficult for a pwd and may cause a worsening of symptoms. If you feel she is on the edge between mc and Al, will you have turn around and move her again as she worsens?

Merla

Yeah I really dont know except that she isn't doing well.

It doesn't help that well intended family is saying how terrible the place is bc the people are depressing.

Quilting brings calm

@Merla

You brought your mom to live with you or in a close apartment before. It didn’t go well. She wanted to go home. She went home. That didn’t go well. She’s not going to do well in the MCs by you either and she will be away from the people who visit her. My recommendation is that you listen to harshedbuzz. You can’t keep bouncing her back and forth. That makes her anxious and unsettled. There’s no answer that will make her happy and you happy. Truthfully having been through this for 5 years, I would have given anything if my siblings had stepped up to the plate and taken their turn at their locale… letting me have a life. If I remember correctly, you have two children and a husband who travels for work?

kh945312

https://alzconnected.org/discussion/72563/not-adapting-well-to-memory-care

hi… I have pretty much exact same experience with my mom. My mom moved into MC 3 months ago. She’s finally settling down. When I considered moving her to a different place, every other MC advised me not too. Said transitions are very hard, and she is safe and finally adjusting.

sandwichone123

In my experience she will never settle in while family members are coming in and telling her how bad she's got it. She's still only been there for several weeks, but it sounds like she's got family in telling how she doesn't fit in. There is no place that will work with that dynamic going.

A comment about family who think she's better off than everyone there: she's showtiming when the family visits, but the facility advised you that this is the correct placement. Trust them.

Merla

I have never seen her depressed or despondent in my life. Angry yes but not despondent.

Yesterday I had family call me and say how terrible the situation is and referred to it as "an end of life prison cell."

My family is not dumb so it's not like they tell her the place is terrible but they do tell me this. I am disappointed in the facility because they are needing to be managed closely for basic things and this is hard to do at a distance.

Also I had assumed my sibling made her room look nice like a nice hotel room but my family said it is depressing and drab so this is a quick fix. I'm also going to get the ball rolling on having caregivers take her out. And I'm going to fly out there and see it myself. My extended family are the people who are visiting, spending the day with her, taking her to see her parents etc. My sibling I think didn't know what to do about our moms anger so just hasn't seen her. She has been there two months and he has seen her once and only talked with her a few times. And this is because she is very angry with him and he doesn't know what to do about this.

Any way I'm going to fly out and see the place with my own eyes so I can compare it to the very nice facility 5 minutes from my house where I could manage her care more closely. My sibling assumed he wouldn't have to do too much once she was in a facility and likely underestimated the work involved.

bether00

If you can hire a care manager, that was something I found very helpful. I hired someone hourly for consultation during transitions. I paid very little in the grand scheme of things and had someone familiar with pros/cons of different facilities that were matched to my mom’s current state. We moved her from her house to a condo next to me, then to AL, and then to a group home when she needed more care. She helped coach and advise along the way. Transitions are hard, but you should trust your gut. Sometimes we need to adjust if it’s not working and when you get eyes on your family member and home you will know.

Merla

https://alzconnected.org/discussion/comment/239064#Comment_239064

how did you find a care coordinator?

my main concern when my mom moved to MC near my sibling was that I was certain the two facilities by me which are a better fit but I thought the facility by my brother was good enough and trusted his judgement and thought having multiple family members nearby would outweigh what I could provide her. I also thought bc she was already there it would make sense to give it a go there and if it really didn't work, she could move by me. I however really wanted it to work but it just doesn't seem to be working well. I'll give it some more time but I'm losing my optimism.

I think my sibling took on having our mom near him without really understanding what he was taking on. So for example we need to make her room nicer ie nicer more comfortable bedding etc and he isnt able to do this for 2 weeks. So I'm not judging him but if this takes him 1.5 weeks then he likely can't take on the responsibility of her care. If she were 5 minutes from my house, I would just run out to a store and get this all done in 1 hour. And also setting her room up to look like a nice hotel room should have been done before she ever moved in. I can't manage this type of thing from a distance. I don't know how long her siblings are going to be willing to play such an active role in her care bc they are caring for their elderly parents and have their own lives amd grandkids and presumably some of their own health issues.