Changing placement

Donnajoy

I am POA and medical designee for my sister who is in MC for last 6 months.  Staff is nice to her and good communicators but problem is lack of socialization and activities.  Most people in The average number of people on her locked unit are 6… only one is capable of conversation.  We have found a place with more planned activities and more people at higher functioning levels, but it is more expensive and not sure if it will make any difference.  

She has lots of delusional thoughts, one being she can manage just fine on her own and that “the doctor told her she was fine.”  She has aggressive outbursts, hates where she is, but also hated being by herself, hated living with long time companion, and hated living with her daughter.  She can be oppositional, refusing showers, balking at taking meds, etc. I live about three hours away and try to get up there about every three weeks.  We ( companion, daughter) like to take her out of the building for a change of scenery, but lately when returning, she balks at going in, saying she doesn’t live there anymore…..Wondering if the more expensive place, which would deplete her resources more quickly is worth it… she is unhappy wherever she is….. currently on her second trial.   Of an antipsychotic ( Resperidone), but one side effect is she is more detached and less likely to engage with other people.  She has never been interested in crafts… she used to like going and seeing new things and meeting people, but much of that is dwindling….

I know moving her will be a big disruption and unsettling for her.   Would appreciate any insights.

DS

dayn2nite2

She will never be "happy."  

I would stop taking her out of the facility for any reason unless it is a doctor/dentist appointment that is absolutely necessary until her behavior is under control.

The more expensive place is less likely to put up with her and you could find yourself with no bed in the current place and being kicked out of the more expensive.  What is their criteria for eviction?  Get the contract and read all of it, you can have an attorney go over it.

With people who are unhappy, if their current facility is trying to work with them, let them do the work.  Do you like to see her "detached" - probably not, but detached is preferable to belligerent and aggressive.

In this context I wouldn't rock the boat.  You will probably find yourself back at square one if you move her again and could very well be with her being evicted from new place and her bed already filled at present place.

ButterflyWings

Hi and welcome Donnajoy. 

I’m sorry for the reason we all need this wonderful community, but so glad we have it, and each other. I am just sharing my 2 cents though I have not had the direct experience with long term placement of a LO (yet). Trying to care for my DH at home for the duration, if we are able to. He is in later stages now— 6d. 

If you are comfortable with the care her current placement provides, e.g, is she safe, clean and fed, and you have a decent relationship with the staff? If so, I would not move her.

Based on your very insightful analysis, the new location you’re considering will run through her money faster and there is no guarantee she will like it, either. Many forum mates have mentioned the lengthy adjustment period needed after any move, and then our PWD LOs are declining anyway since this disease is progressive. I think I would leave well enough alone, rather than expend the effort and make an expensive change on the outside chance she might not hate the new place or people too. 

Good luck. Others will be along soon with more perspectives. Supporting you in whatever decision you make. Wishing you some peaceful moments and self care in the process. 

Neverends

Welcome Donna joy, I was a nurse in LTC for many years.  Moving her would not benefit  her, it takes time to become acclimated  to the new surroundings. Some do ok, some never seen to adjust or it's their dementia  just progressing.  Activities  are important  only if they will go or participate or aren't aggressive Some just can't. I worked on a locked unit where they  had all dementia of some form. They took some off the unit that weren't disruptive to go to activities. We had a room where Activities  would come and play an old movie or music which went over real well. In PA everything  is at a standstill with our nursing homes. My mother has been on the list for 18 months and counting,this is a veterans  nursing  home for spouses  of veterans. There just never seems to be enough help to care for the residents. They got what they needed as far as meds,beds and food but things did fall by the wayside. Hope that helps some. Take care.

Unknown By Man

I can only speak from my experience, at my mother's current stage she is a complete and different person when she is socializing, far more happy and engaged. Just unfortunately given her lack of finical resources, difficult behaviors, and covid getting her the level of social interaction she craves is a difficult task. Though my mom has always been a social butterfly, 

Not an easy choice, but I do personally feel it is worth the shot to see how they fair in a more social enlivenment where they can spread their own wings for a time. It is just unfortunate that we have to choose between them. Also the aggressive behaviors throw another wrench since for the most part every place no matter the cost will take the path of least resistance, so most likely your LO will not even be able to take part in the social activities if they are difficult.     

Quilting brings calm

You listed several environments  in which your sister was not happy.  She’s not likely to be happy in a different MC.  Plus the change in environment will cause her to deteriorate at least for a time.  But then, she may deteriorate just through the normal disease progression. 

I would instead supply her with some additional busywork to do, anything that she can still do. As someone else suggested stop  taking her out.   

harshedbuzz

Donnajoy-

I would not move your sister for something as fluid as "more conversational" residents. My dad was ridiculously verbal; he mostly talked with staff. People came and went from his hallway regularly- turnover is is a fact of life in MC. At dad's there was one gentleman he used to talk with whose family moved him to be closer to where they lived. Another gentleman ate with who was more moderate in disease progression had a stroke and was moved to a SNF. I also learned that some of the residents who seemed more "together" were just nicely dressed and groomed. There was one woman I assumed worked there- her husband visited daily and picked her clothes and fixed her hair and makeup each morning; I overheard them taking and she was only capable of word salad. 

Instead of outings, I wonder if a paid companion a few days a week might be a better option.

HB

Iris L.

I agree with HB about a personal companion.  Make sure she is not watching TV news or crime dramas or TV talk shows they are inevitably negative and depressing for a PWD.  Try brief periods of simple, engaging activities so as not to overwhelm her.  

Iris L.

MN Chickadee

I don't think I would move her if I were you. The transition would be difficult for her, and it sounds like she may be one of the many PWD who aren't happy anywhere. It's hard to accept, but once a person is ready for memory care their socialization needs are often so different. They are often in their own little world and can't handle a day filled with activities and talk. Many do well with just one or two activities per day (and the activities may not be something we without dementia would consider fun - balloon volleyball or coloring and the like.) My mother is fine with long stretches of down time. When she first moved to MC she helped with folding towels and setting the tables and things like that because she wanted to keep busy. Those days are gone.  Most residents take a good long nap in the afternoon. In between structured activities she sits and fidgets with stuffed animals, fidget toys, and blankets. Both of her MC units have had people from time to time who seem more with it, she was one of them at one point, but they decline too.  So much turn over. Just because the other place has people who appear higher functioning may mean nothing for actual interactions, conversations. Sometimes the people who hold conversations are a double edged sword as well. They tend to be the ones who are also shoppers (taking things out of other people's rooms) or can stir up trouble with insults or arguments. They don't necessarily have the people skills and judgement you'are actually looking for. If you are looking for someone to keep a conversation going and help her want to engage in activities and socialize you may be better off with a paid companion, because that is the stuff people without dementia do. If she is in a place with good day to day care and they have good communication I'm not sure I would gamble on that with a new place.

Donnajoy

Donnajoy here…Thank you for all the thoughtful responses.   I so appreciate the pretty consistent thoughts about staying put, and I had not thought about trying a paid companion to try to work with her in her current placement.  Bless you all!