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Ellenshep Asked August 2014

How do I know when or if I need to move my Dad, with dementia, back to his original assisted living facility?

My father who has dementia was living in a assisted living facility with about 70 other residents. I found that they were allowing my father to do alot of sleeping. no matter what time of day that I came to visit him he would be asleep in bed in his pj's. He was having his food trays brought up to his room while sleeping which many were left untouched. This facility offered bus rides twice a week, entertainment from different local groups, and a more detailed menu..... I moved him from this facility 5 weeks ago to a smaller care place with 16 total residents.. He is more alert here, he is up and about when I come to visit and seems more like his own self.. But he now is telling me he does not like it here.. this new place is a dementia / alzheimers care place and the residents have all different stages of this awful disease... my father says he is living with "people who are nuts" and he does not want to see these behaviors. he misses the good food, the entertainment and the bus rides.. he is insisting I take him back to the original place,.. he states its his money and if he wants to live there even though the cost is alot more he can spend his money on what he wants.. i have lied to him and told him I put on a waiting list back to the former facility.. I dont know how long I can keep saying that.... I like that my father is more alert, and I know that spending his days sleeping is not good for his health. But I dont want to hear him unhappy either...what do i do?

Jaye Aug 2014
I am in a similar situation... My Mother who has been diagnosed with dementia, she is 87 was living in an independent senior living home... Beautiful place, however she started 2 fires in her apartment and she also took a walk on a VERY busy street, so they would not longer let her stay. I moved her to an AL with a memory care unit. Brand new really lovely however she does not seem to like it... It is very expensive however I do not feel I have any choices. I told her that she needed to pray for contentment she has a very strong faith. She has wanted to go to heaven since my Father passed away 4 years ago. I would say that you have made the right choice for him and he will adjust. I know this is not easy. It is role reversal in some respects and to me it is NOT very comfortable. I do always try to treat my Mom kindly and with respect. take care...

akdaughter Aug 2014
Would you consider looking for a different AL facility, one that is like the first one in size and features, but a better care plan? When I moved my mom to AL over three years ago, I had a very limited amount of time to research and visit facilities before her move. After a year I became concerned that she was spending her days in her chair and not participating in activities. I found that they would make announcements about the day's activities at breakfast, but my mom couldn't remember the announcements and never knew what was going on, and couldn't remember to check the bulletin board. I started looking again. I called the local Alzheimer's Association for recommendations, asked friends about their experiences and visited facilities. I found a wonderful facility that has independent, assisted, advanced assisted living and is currently adding a wing for memory care. The staff goes to get my mom for activities, and they know how to convince the residents to participate. For example, my mom likes to play "trivia" where they ask questions from the 40's and 50's (times that my mom can remember). They schedule trivia right after the exercise class, so they pick my mom up early for trivia. She enjoys the sitting exercises when she gets there (they play big band music from the 40s during exercise), but would decline if they asked her to go to exercise alone.

Not all AL facilities are expert in the care of dementia residents. Moving mom was a challenge, but she is much happier and more active now.

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gladimhere Aug 2014
I was not suggesting that Dad move in with you, he needs to be in a facility. I asked the question because if money is your concern then that is the option where money would not have to be spent. Though I am an advocate for family caregivers to be paid, while sadly most of us do not receive any sort of payment. Instead we are left in financial ruin, lose all we have, even when there are significant resources of the parent. But siblings will not agree to a payment amount because of impact to their inheritance. The only option to preserve his resources for you would be to take care of him in your home.
The money is his for his care first, anything left then you will have something to inherit.

chimonger Aug 2014
There's more "out-of-it" elders in the old place, because they have more beds: 70 as opposed to 16.
So the only thing the larger place has going for it, is, there might be a few more elders that have a few more marbles in a row, for Dad to talk with--but he was not doing that there--he was sleeping..
They were not, apparently taking best care of Dad....letting him sleep all the time, not getting him dressed---that's elder NEGLECT----and maybe poor staffing.

MaggieMarshall Aug 2014
Give him a month to adjust. Then, if he's not happy? Move him back to the other facility. What is your goal? To make him as happy as you can, yes? At least that would be MY goal. I can imagine nothing worse than being somewhat "with it" and being surrounded by Alzheimer's patients and people in a worse state of dementia than I. Make dad happy. That's what counts.

hadenough Aug 2014
Yep, my Mom cancels appointments that I have made, leaves the burners on the stove on, everything is someone's else's fault. Oh and also listens in on all my phone conversations and acts like an entitled princess most of the time. Assisted living - the time has come.

chimonger Aug 2014
He got much better--getting up , dressed, interacting with people, AFTER he moved to the smaller place.
At the larger place, he was staying in bed, not getting dressed, and was NOT using that bus to go anywhere--right?
He complains about other residents.....because he now can----because he's up and aware of his surroundings at least some---he's staying awake more.
Dementia--gotta love it.
Stop letting him guilt-trip you.
And BTW---taking him home under your roof---Bad.
Hes going to get progressively worse.
That means ALL his care, and responsibilities that go with that, will be harder.
That means higher levels of responsibility and caregiving you may not be able to safely do--not for him or for you.
It means 24/7 high-alert babysitting--keeping track of everything---especially if the elder wanders around----the house, the yard, the neighborhood.
They can lock themselves out of the house, or let strangers in, when you're not home to know what's going on.
They can wander off and get lost or hurt.
They can fall or run into things, grab to steady themselves on curtains or furniture and end up on the floor with furnishings on top of them, or pinned between furniture and wall.
They can leave the burners on the stove, spill grease under burners that cause a fire next time anyone uses it. Spill hot liquids on themselves.
Scream and yell.
They can do squirrely things that defy logic, and ruin your life, from going through your private papers and sharing them with whoever they want to, to "helping" lighten your load by making meals that include ingredients that make you sick, because they don't believe you're really allergic.
They can swipe your belongings and throw them away, hide them, or give them away to strangers; make appointments with odd companies and invite strangers to our house before you know what they are doing.
Think of them as potentially, erratically, very active 3-year olds in adult-size bodies. Mayhem in slow-motion.
I'm sure most everyone here can add plenty of stories how their elders did some wacky, harmful, strange things that screwed up their households, endangered the elder themselves and others, because their elders with dementia lived under their roofs.
Sometimes, I think those of us who choose to care for our dementia'd, beloved elders under our own roofs, must be a certain amount either crazy, co-dependent, masochistic--or a combo of these--ourselves----'Cuz we're sure not getting paid for what we do, most of us!

hadenough Aug 2014
If you move him back he may want to move again. My Mother with vascular age related dementia is not really able to make decisions anymore so we have to make them for her. Very difficult as she was such a strong woman. If your Father is doing better at the new place maybe that should be the defining reason for him to stay. My Mother is not really "happy" anywhere anymore so we have to do what keeps her safe and healthy - good luck - I know how heartbreaking it is to make these hard choices for our parents.

Carebill Aug 2014
As noted, he may be happy one day and unhappy the next, but the thing is if you think he's getting better care where he is right now then leave him there. The excuse you're giving is good one [sadly, we have to tell little white lies to dementia patients for their own good]. His moods will change, but hopefully he will adjust. I would not recommend moving him in with you as it raises a whole new host of challenges and caregiving is not for everyone. And, as painful as it is to recognize, Alzheimer/dementia patients do not get better, they get worse. If he's getting good care, you've done the right thing.

Abagail Aug 2014
NO do not move him in with you! Remember he has dementia and what he says one day is totally different the next hour. The smaller facility sounds like the place to be. My mother also makes those snide comments about some of the other residents in her facility, but I do see her smiling. The staff encourage / assist her in participating in the various activities and are there for her daily living needs to be taken care of. At this stage of the game they are still thinking of the good old days and don't realize they are now like some of the residents. Keep him where he is at. Good luck and enjoy him while he is still with you in a safe environment.

gladimhere Aug 2014
Ellen, was any part of the decision to move him based on money? It is his money to spend on his care and needs. As Pam said, the former facility may not be willing to take him back. Increased sleeping is part of the progression of dementia. Maybe he would be happier in his own place with 24/7 caregivers or a live in. Maybe you would consider moving him in with you?

Why does he not like where he is? Or is he even able to express that? It could be he just wants to go home which to him could be a childhood home or even just the desire to be himself before this awful disease took its hold on him.

pamstegma Aug 2014
They may not take him back. They try to avoid families that play "ping pong" with facility choices. They don't want anyone back who left on unhappy terms, and they will totally avoid patients with adversarial relatives. After a patient gets moved 5-6 times, they become "blacklisted" and no facility will open doors.

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