Dilemma about Memory Care

tucson anne

I have two questions: First, almost universally the memory care facilities I have visited say you should place your person sooner rather than later. I wonder what the evidence is for this, or whether it's easier for them to have less impaired people. What I see, almost everywhere, is people who are mostly pretty far along in this journey. Any actual evidence for their claim that earlier is better.

Second, my brain has lately been doing this calculation: will his unhappiness (HD) be worse than my current unhappiness? My HD is peaceful, no temper outbursts, not yet very incontinent, bored all day long when I haven't taken him on an errand or found a video that he will watch. Doesn't leave the house on his own. Part of my unhappiness, aside from the constant physical care (needs help dressing, showering; cleaning up after eating with food scattered about; laundry from food and urinary accidents) is seeing him so bored and not being able to do anything. Add to that the feeling of being trapped, though I do still leave him alone and also have a carer 3 hours twice a week. So is placing him to relieve my stress, which will make him less happy (no lovely house, purring cat, wifely drives here and there, carefully thought out t.v. that he actually will watch), worth his pain?

This all sounds so whiney given what most of you are experiencing, but I still wonder…

FTDCaregiver1

My experience with MC facilities is that they sell first to make $$$, and yes, they do cherry pick to get less costly consumers, with lesser behavioral symptoms into their facilities. Reading your description of your LO, I can see why they'd be interested in admitting him. It's simply BS when they say to you to place as early as possible. Its a deeply personal decision you have to make in what's best for you and eventually the LO hinged on what you can tolerate at home and still keep your sanity & health. For me, came down to what I could take on without killing myself in caring for DW at home. I tried 6 months of MC, but eventually brought her back home (poor care and way-to-costly) but got increased in-home daycare so I can take care of myself. Good luck.

easy23

I placed my DH too early and wound up bringing him home after 5 weeks. It was during COVID so my tour of the facility was virtual. What I didn't see was the other residents. Turns out they were much further along than my DH. They bothered him with sexual remarks and constant knocking on his door thinking he was the mayor or an employee of the MC. Now I have a companion for him at home, 3 days a week, 4 hours each time. It is working for now.

tucson anne

Thank you both—I need to increase at home cg and figure out how to do respite care so I can take a short vacation. I'm looking at all facilities around me, but suspect they will all be filled with people who are further along. Also, once the Arizona horrendous heat wave calms down, we can resume outings that we can't do now. That will help.

GothicGremlin

My situation was a bit different as it was my sister who I was caring for, not a spouse. That said …

At first I had caregivers come to the house, and they were great. They engaged my sister - nothing strenuous, but games of monopoly, easy card games, puzzles. They'd make dinner for Peggy, etc. At first Peggy balked at having people come by; she viewed them as 'babysitters', and she hated that. But after a time she saw that they weren't 'babysitters', they treated her with kindness and dignity, which was huge. We both liked them so much we ended up keeping one of them all the way through the end of Peggy's journey. At the end Peggy couldn't quite remember who she was, but knew that she was one of 'her people', probably a friend, so that was a comfort.

I did have to place Peggy in memory care. I was also told that earlier is better. The reasoning behind it (as told to me) is that it's easier for a person with dementia to form routines when they're still higher functioning, which will be a comfort to them later on. When I placed her, she was on the cusp of incontinence, and she was pretty confused about her surroundings, like, she couldn't find the bathroom at home. She had moved back into the house we'd inherited from our parents - the place we moved to when we were both teens. So that was quite the shock for me. The confusion led to a lot of stress for her, which was clearly not good.

She had a few tantrums and meltdowns in the beginning of memory care, but she came around to that too. She even told me, "I should have moved here sooner." Not what I ever expected to hear! I liked her memory care facility, but I'll admit I had to search around to find the right one, and it wasn't cheap.

Everyone's experience is different, so what worked for us, might not work for you. But I think memory care is worth looking at even if you ultimately decide not to do it.

M1

My partner has been in MC for over two years and definitely was one of the higher functioning folks at both facilities she has been in (she is now on hospice). I think when everyone tours they are shocked at the level of impairment of some of the residents. But—tours are short. If you actually spend time in a MC facility, you figure out pretty quickly that there is quite a mix of abilities, and there is a lot of turnover. So what you see on a tour is not necessarily representative of what goes on on a daily basis—-I can personally attest to that. Many residents who may appear nonfunctional to a stranger actually have more capacity than you would realize on a walkthrough, and once they get to know your face they are more interactive. This has certainly been my experience.

As has been often said on this forum, there is no right or wrong answer as to timing of placement. There are innumerable factors besides the loved one's level of functioning. The caregiver's support system, the cooperativeness (or lack of) of the person with dementia, incontinence, mobility, need for socialization—all of these things can play a role. I wouldn't let what you see on a short tour dissuade you.

clarinetist

Tucson anne, I really connected with your post. I went through a similar mental calculation when I was deciding whether to place my DH in memory care. It seemed to me that most of the other residents were worse off than my husband. But after several months I could see that he did fit in. Since then, I’ve watched as other new residents came. Like my DH, they seemed much more with it when they arrived, but after awhile they seemed more like the other residents. I don’t know if the experience of residential living does that, if the change causes progression, or if being in a new setting just shows how much scaffolding the PWD was receiving at home by being in a familiar environment with caregivers attuned to only his/her needs.

I also did the “whose unhappiness is more important” calculation, and that’s what led to his placement. My DH, a normally calm, type B personality, started showing some aggression. That, combined with his shadowing and the hassle of finding in-home caregivers that would stick around, made me decide to try memory care. I had cared for him at home for six years, and I simply wanted some life of my own again.

Is my life better now that my DH is in memory care? My life is definitely better. I didn’t realize how much stress the day-to-day caregiving demands caused until they were lifted. I still am caregiving in a different way. Last month, when my husband’s behaviors escalated and I had to shepherd him through 2 Geri-psych unit stays, was a very bad month for him and me. I get calls from his memory care almost daily, and visit every other day. But now I have some time to myself and can recover.

Is my husband’s life worse in memory care? In some ways, yes. He misses my daughter and me, though as time passes, less so. In other ways, no. He was very bored and restless at home, and while he can still be restless, he’s not bored at memory care. It’s hard to separate the effects of being in memory care from the effects of dementia progression.

What to do? Only you can decide. Memory care isn’t permanent; you can take him home at any time, as FTDcaregiver and easy23 did. Best of wishes as you sort through your decision.

Dio

My DH has been in memory care a little over a year now, and I can say in a heartbeat that it was the right decision…but only because I chose a good facility. DH is now thriving, almost back to normal…long story. This would have never happened if he had stayed home—one of us would be dead now, and most likely it'd be me. He's the youngest in the facility, barely made the 60 year old minimum age requirement. Went through a rough patch in which he punched and kicked staff, sending one to the ER. And police was called to deescalate a volatile situation with DH. Now that he's so normal given the right combination of meds, I wonder if I should bring him home. But my network of supporters—family, friends, group support—all responded with a resounding "NOoooo!!!!" Each situation is different, and only you can decide what's best. But IMHO, preserving your own health and well being is of utmost importance.

harshedbuzz

I think it would benefit facilities to have more residents earlier in the progression to socialize with those folks who don’t have a spouse or adult child willing to keep their LO until incontinence or sleep fragmentation makes the situation unworkable. The biggest challenge to marketing even a top notch facility is all of those folks who are much further in their progression wandering around during tours upsetting prospective families who may not be honest about their own LO’s condition because of scaffolding and loving rose-tinted goggles.

My aunt was probably stage 5 when she went to MC. She was a widow with no children and a guardian who lived in a tiny condo in an historic home. Not only did she blossom with the socialization and error-free activities, her caregivers really got to know her well.

Dad went much later in the disease progression and should have gone earlier. As a result I think he struggled more with the routines. Worse, his care took a physical toll on my mother who neglected her own health. This neglect resulted in some vision issues and the loss of her driving which means her stage 8 is not what she planned for. And neither is mine.

HB

tigersmom

Tucson Anne, I am so with you on this. In the past few weeks, I have toured six memory care facilities. Two of them were dumps. Of the other four, I could see two as possibilities for my DH, now entering stage 6. At all but those two, none of the residents looked anything like my husband. They were all much farther along in the disease, and many of them seemed to have other serious medical issues as well. At one allegedly all-dementia facility I went to Tuesday, they told me their staff to patient ratio was 1-8. I looked around at the rest of the residents and thought, these people need so much care that my mobile, mostly-continent husband won’t be getting much of their attention. And the costs, at least where I live, are staggering. Need someone to give him his 5 pills a day? That will be an extra $1100 a month. Need someone to change his briefs when incontinence arrives? That will be an extra… well, you get the idea. Several of them have outdated, inadequate parking. Almost all of them are farther away than I’d prefer, and I live someplace with fearsome traffic. Maybe I just haven’t found the right place yet, but the whole thing seems like one giant ripoff. I am going to look at two more places Friday. After that, I will take a deep breath and think hard about giving the new dose of risperidone more time to work.

frankay

Such an important but complicated dilemma. I think MCFs have gotten themselves into a Catch 22 situation. I think more people would be in MC earlier if it were less expensive but because it's so expensive, many people wait until their LO is much further along. My DH has been in MC for a year now. Some of the people who seemed more alert and more mobile than he was a year ago have passed. Some who were much further along are still there. It's hard to know because it seems that for some, a decline is very rapid and for others, not so much. The activities are a real plus, but only for those who particpate. Some do not want to participate for whatever reason; maybe the stage they're in or maybe their personality, or maybe they're walkers. It's a mixed bag. I was totally caught off guard by how important socialization was for my DH. If he were home, he would be sleeping in his recliner in front of the TV. At MC, he is surrounded by people all day since he is wheelchair bound and doesn't stay in his room all day. I don't know when the right time is. I tell people to be realistic, try to keep emotions out of it, and do what they think if best for their LO and for themselves. Its a tough decision to make.

tucson anne

All of your answers have given me much to think about! I'll continue visiting memory care facilities and focus less on how impaired people seem to be and more on the important factors—caregiver ratios, activities, and of course safety measures, though they all seem to have that. I'm think that facilities that have a mix of assisted living and memory care would be good—I know the corporate ones have people segregated but I'm going to ask if mc people can ever go to assisted living activities (better exercise I suspect). We have several privately owned facilities in Tucson that do have somewhat of a client mix. The more I look, the more I will know.

M1

Anne, the answer is definitely yes, those in MC who are able can usually participate in AL activities, though they may need to be accompanied. Both facilities we have been in did this. I'd be very surprised if they said no.

ghphotog

I never had the heart to place my DW in MC earlier. I took care of her up through most of stage 6, she seems to be approaching 7 but very slowly.
I did use daycare services for a couple of years and that helped quite a bit. They keep them occupied with activities most all day long. My DW would never want to go but once she was there she was fine and enjoyed it, then when I picked her up I would take her to eat.

As M1, said there are a lot of different coginitive levels at an MC. Some can even carry on with what seems an intelligent conversation. Others, like my DW are very advanced and she doesn't know when I'm there from one day to the next. The staff aides are mostly young girls but they seem to always be kind and patient. My DW is always clean when I visit almost daily. There are some with behavioral issues, I've seen some come close to violence on other residents but the staff, two you girls, where able to control this combat veteran who is still fairly strong. That worried me a bit but I'm sure most every MC has problem residents.

M1

Yes I think there are always problem residents. Violence is rare and not tolerated, so rarely witnessed. Most common in my experience is problems with wandering and those who do not recognize personal boundaries, such as wanting to join a private conversation during a visit. This is hard to control and just generally requires a watchful staff and redirection. There are some residents constantly on the move, and they tend to require one on one supervision. The odd person wandering into my partner's room is probably the most common disturbance we deal with. She is able to lock her room but rarely does. She certainly does not know how to get rid of an unwanted visitor should someone walk in on her. Fortunately staff tends to identify the wanderers fairly quickly and know to keep an eye on them.

Losing possessions is another common problem (and why nothing of real value should be taken). Laundry gets misplaced no matter how well labelled, and residents "shop" each other's belongings unintentionally. Some remain a mystery as to where they get to. We've lost shoes, jackets, pairs of pants, shirts….I spend part of every visit looking for misplaced items.

frankay

I might add that during a tour, you may only see the residents who are in wheelchairs, Broda chairs or those wandering about. That happened to me on tours and I thought "Is everyone like this"? No, they are not. Some of the more high functioning residents spend a lot of time in their rooms and you may not see them on a tour. The staff get the immobile folks out in a common area so they can keep an eye on them and they get some socialization and stimulation.

harshedbuzz

Anne-

My aunt went aunt who did really well in MC, initially spent part of the day with the AL folks. She was pleasant and polite as PWD go, so she fit in quite well during crafts, music activities, lunch and on their regular outings to restaurants.

The other pieces to touring MCFs to keep in mind-

The population can turn over quickly. You might opt for a facility the seems to have folks who are less far long in terms of progression and find it doesn't stay that way. The hall we chose for dad once we picked the MCF had 5 men (including dad) which is pretty rare. We thought dad might be happier among men. Within 2 weeks, one was transferred to a MCF nearer his DD in another state and one died. The next month another of the men was transferred to their SNF; I'm not sure if that was driven by a medical need or the man was converting to a Medicaid bed. My state's Medicaid doesn't fund MC. Four weeks into dad's stay, the hall was down to 2. None of the new residents during dad's stay were men.

Another piece is that you can't always tell by looking. There were 2 women on dad's hall that looked like they might be higher functioning. The one was late middle aged and was always beautifully turned out. The first month, I thought she worked there in an administration position. Turns out her family provided a private aide each morning to get their mom ready for the day— shower, hair, makeup and a lovely outfit. She was a solid stage 6 with very little language. The other woman was very EO and didn't look a day over 40. She didn't talk at all and didn't recognize her family when they visited. Dad, on the other hand, looked unkempt and disheveled— mom and aides tried their best, but he always ended up with his clothes twisted and his hair all messed up. His gait was bad. But he spoke fluently, engaged with his aides about their homelands (he'd been a teacher specializing in non-western history/culture) and remembered family who visited.

HB

Jazzma

https://alzconnected.org/discussion/69832/dilemma-about-memory-care

You might want to try taking him to a facility of your choice for daycare, both to give you some time off and to see how he responds. Knowing that you will be coming back to take him home may allay some of his concerns. If it works out well, that could be the facility he will eventually go to when you decide the time is right.

Best of luck. This is a very hard decision. I still struggle with whether I placed my DH too early, and consider bringing him back home. No decision is permanent.

Dio

My DH was a problematic resident last year this time and now he's the model resident. Go figure. Nothing stays the same with changing phases in disease progression and people, including staff. I would focus on the operating procedures and philosophy of the facility. If possible, talk to family members of existing residents to get their opinions.

jfkoc

I personally found it a lot easier for me to increase in home care.

I did not have to drive somewhere to visit.

I knew my husband was getting good care.

It was a lot less expensive.