My mother passed away 2 months ago and was there to help my father. He had grief induced worsening dementia and we had no choice but to love him. With us out of state, this further caused agitation and confusion. We have temporarily placed him in a very nice memory care facility, but he had gotten “better” or at least back to his baseline. He had recent seizures so the state will not allow him to drive. We are in agreement, he is 80 and there is no need. He wants to be in his long time home. I cannot move in with him and my brother and his wife live 10 minutes away. Plus, he really doesn’t want anyone living with him. What do we do? Memory care at this point is overkill for him; at the time we placed him, he was trying to leave our home on several occasions and got aggressive with my husband, which is not his nature. My brother feels if he was in his own environment he would far better.
2 hours was the timeframe one man with mild dementia told me he loved being at home in his own house that last time.
He had pushed & pushed family & hospital staff to allow him home.
After 2 hours he got worried. Had he done the right thing? His daughter was far away. She didn't answer the phone. He didn't know what to eat, he was worried about people breaking in overnight, he wanted to lock the doors but couldn’t find his keys. He called EMS. When they asked what his emergency was he said he didn't know but just didn't think he felt good at home. He said his bottom was very sore from sitting in his chair, that he couldn't drive, didn't know what to do, pleaded they come & get him. He kept calling them until they did.
Start asking your Father what he wants. What he REALLY wants.
Home is a concept, sometimes it is a PLACE, sometimes a FEELING, sometimes it is in THE PAST.
Does he want to be safe? Have hot dinners? A comfortable bed?
Does he want to feel loved?
Reassure him. That he will be loved & cared for.
An empty house will not provide those things.
Your brother’s feeling is that he might fare better “if he was in his own environment” – has he been in the current facility long enough for it to feel like “his own environment”? Can your brother help him to settle down in the facility?
It sounds as though you think Memory Care may be more than he needs. Is Assisted Living an option in the same complex? Could you take him for a guided tour of AL, and see what he thinks of it? Could you arrange with the MC admin for him to ‘go home’ for 2 days, to see how he copes. You will still have to pay the fees, but it’s less disruptive than cancelling the MC and having to start again in a different unit.
Best wishes for a difficult situation, Margaret
You can possibly move him back one level to AL for now and see how it goes.
Obviously, your brother does not understand dementia.
Read around this site, most want to go home, then when they get back there everyone has to be their crutches as they are no longer able to care for themselves.
If your brother wants to be a 24 hour a day caregiver, then you need to back out, he will quickly learn that father cannot function on his own and will burn out.
”Independent Living” and “Assisted Living” are both less restrictive than “Memory Care”. It may be a good idea to see what’s available for him in those settings. Some offer “stepped care” so that moving to a higher level of care can be accomplished when needed.
Was the term “grief induced worsening dementia” ascribed to his painful loss by a professional, or did it come from family observation? You might find that administration of small doses of mood stabilizing medication would be comforting to him. Also, is your brother’s perspective based on brother’s observations or has any sort of geriatric specialist weighed in.
Unfortunately there may be some indicators that he is no longer to make good decisions about his own life and care. His current behavior includes subtle but often observed indications that he may need help and direction to live safely. Does someone hold his POA?
Those of you who love him seem to be pretty much on the same loving page in terms of helping him. Just be sure that his safety and welfare are being considered carefully and objectively too.
Best of luck to him and to you.
That can't be replicated if he's home alone.
At this point, what your dad needs is more important than what he wants.
It’s going to be 10x harder to get him in assisted living later on when he worsens. And he WILL worsen. He could live another 10, 15 years. Think long term, not just for now.
He has not gotten "better"
He is getting socialization, he is getting cared for, he is getting his meals and his daily needs cared for by a full staff of people.
If he were to move out of the MC facility the would become isolated, not eat properly, not care for himself, may wander off attempting to go to the store, the mailbox, get the paper or just to go for a walk.
He has lost the ability to make sound, safe decisions so someone must make those decisions for him. They may be decisions that he is not happy with. Just as he and your mom made decisions for you when you were unable to make good decisions for yourself. But they kept you safe now you must do the same for him.
If he is asking to "go home" this is called Sundowning and the person is usually referring to their childhood home, the one deepest in their long-term memory. This was demonstrated by my Aunt with mod/adv dementia who cried to "go home" every afternoon as she sat in the recliner of the home she's been in since 1975.
The caregiving arrangment works if it works for the caregiver(s). You will burn out trying to keep him safe when he doesn't participate in his behaviors that will help him stay safe. He now needs MC unless you're willing to constantly orbit around him. It makes no sense. And honestly, the socialization he will get in a good facility will eventually be good for him.
You can't let someone with a broken brain call the shots on this -- he has no idea what he's asking (dementia robs people of their empathy) and you have no idea just how impossible and draining it will be for you.
If he isn't on meds for depression, anxiety and agitation, he will never be able to be in a more relaxed state, since dementia robs people of their reason and logic and makes them incapable of bringing themselves to a place of acceptance and peace. Please watch some Teepa Snow videos on YouTube so that you can educate yourselfs and be better advocates for your Father.
Solid advice has been given to you by many others on this thread. Please take it to heart from those who have been there and done that.
Your dad's dementia, like everyone is saying, did not really "get better," he simply received the care and attention he needs, which is the most important thing. His health and well-being improved (not his dementia, which can't get better) because it's working! Moving him around over and over again is really not a good idea, and will only make things harder and make him decline all over again. Keep it simple and consistent. Stability and care are what people with dementia need most of all. Help him adjust to being where he is, and look at addressing his anxiety and stress with meds, but I would recommend keeping him in the place where he is getting the best care and attention. It's hard, and we want to give our parents what they "want" but people with dementia don't really know what they want and need.
Have you thought about telling him he can go home if he agrees to "try out" a home aid? The "trial" would be permanent with the goal of finding care folks he gets used to and enjoys having around. Is there a spare room for care folks to use while there? There are considerations for bringing in in-home care help, but that's the only way, I feel, he could go home and be safe, is if someone else is always there to help out as needed. Plus, he needs company. No one with any dementia would do well living alone, imo. They get confused and need someone there all the time, if even just as comfort when they get agitated.
If he gets aggressive with a caregiver, that situation may not work out because, depending on his size and level of aggression, they may not feel they can safely care for him. So you might end up back in MC anyway.
*It's so hard to say about a case of "mild dementia," imo. My grandmother lived at home for a decade, even after progressing to advanced dementia. She got by with a single caregiver shift daily for all of that time, and then my father was in the home the rest of the time and could provide some general oversight. She continued to get her own food for some meals, as long as there was something out on the counter (like fruit or bread). She didn't tend to wander outside the home and wasn't a fall risk. It certainly wasn't an optimal level of care, but she wanted to be in her home, and family felt there was enough support for that to happen.
When she was removed from her home, she declined very quickly... she was also at a very advanced age/dementia. Perhaps mild dementia could acclimate to a new setting better.
I'm out of my depths here, but it's an interesting discussion.
Before any attempt to move home this gentleman goes for a full neuro-psyc evaluation THAT HE AGREES TO, and that he agrees he will follow the recommendation of as regards safety and efficacy of living alone in his own home.
This evaluation will be done including family. and allowing family to be FULLY informed of the evaluation.
This evaluation will be done with the goal of just what you described to us--Father moving home with a child in 10 minutes of him who is FULLY willing to do daily checks by phone.
And that this move would be on a TRIAL basis.
Now, if Dad isn't willing to do this? The answer is no.
If Dad DOES do this, I personally will be surprised if the doc will approve.
And ultimately dementia in general is a downhill slide with no improvement.
So this would be temporaryl.
So, time for family to have a sit-down with dad.
If it doesn't go well you will already have an answer.
"He still knows me, his wife!" But the conversation plays out, and we discover he puts his clothes on backwards and has wandered a time or two but someone found him and brought him home. That is not mild dementia.
"She forgets where she put the butter, but she can fix her own meals." Then we learn that she put the butter in the kitchen drawer six weeks ago and someone just now found it. That is not mild dementia.
"He needs a little help driving, but as long as I'm with him and can tell him where to turn, we get to the store just fine." Yeah, but he had a fender bender in the parking lot a month ago and, well, that's not mild dementia either.
Your dad has seizures. Are you okay with his having a seizure and lying on the floor in a puddle of his urine all day until someone comes to check on him? He gets aggressive, and next time, with whom? That's a dementia symptom and could get a lot worse. Like shooting the mailman because he doesn't realize the mailman is a benign visitor, not the devil that dad's begun to see in the window reflections but didn't tell you about because he forgot. (You think that can't happen? Let me tell you about my mom and the dragon on her porch.) Also, leaving your home sounds like wandering. He just didn't get very far.
What's his baseline? How do you know he's at his baseline? With dementia there's no such thing as a constant baseline. Expect the unexpected with dementia because they change all the time, and it never gets better, only worse. Much worse.
Your dad's own environment that your brother wants to take him back to is forever changed. Mom's not there, and dad's broken brain is changing what he senses and sees everywhere, even at home. What you and brother want for dad and what dad needs are two different things. Leave him in memory care, you're lucky he's there. He needs time to adjust, and eventually he won't remember much about his previous home anyway. Sorry, but that's what happens.
Good luck. I've been through it too, and I know it's hard to see a parent any other way but the way they've been.
I've heard them all, but I especially like the one about needing a little help driving.
If a person needs ANY help driving, they do not belong behind the wheel anymore.
Whenever I would take on a new client, I always asked the family to be detailed about what "a little help" meant to them.
You wouldn’t leave a toddler home alone. That is exactly what you are doing by leaving someone with dementia alone.
He is only going to get worse. Just how quickly that will happen is the question. Start making the necessary decisions.
From your information, OP, my guess is that in M’s last days there was a lot happening in the house. He may not be clear that if he goes home on his own, there will be no company, and no people coming and going all the time. He may miss his wife even more because the house revolved around her and now she is not there. Beatty’s story was a real eye-opener about the horrible feeling of being on your own can be when you are not very capable.
I have recently been in this situation, and thanks to this AC forum, have not given in to the "going home" requests.
AlvaDeer's advice to get a formal neuropsychiatric evaluation is a good one.
See what the medical team recommends and what options they would allow.
When my dad was discharged from an excellent rehab hospital a few months ago, the stipulation was clear- either assisted living, or if at home, with 24/7 caregivers present. Nothing less than 24/7.
In your case, see what the options are. If its a similar answer, are you all prepared to set up 24/7 caregivers in the house? Keep in mind the negatives of this and how your dad may respond to being back at home but by himself except for stranger caregivers. Might her fire them, or kick them out mid shift? I was also advised to get 24/7 care via an agency, with 3 x 8 hour shifts per day, rather than "winging it" trying to privately get lower cost people in the house via care.com etc. I agree that IF one is doing home care, Agency is the way to go. No way I would risk it with trying to do it privately/independently. But think about the costs. IN my area, 24/7 care via agency caregivers would cost $28,000 a month. The only way to reduce this level of care/cost of help at home would be with MAJOR time and contribution from your sibling on a regular basis. Does your brother want to undertake direct caregiving at all? Even with 24/7 caregivers at home, he is going to have to get involved in quite a bit of stuff, checking on how its going with caregivers, that they are doing a good job, looking into dad'd complaints about them (including trying to figure out if they are valid) and dealing with issues of the house itself.
If it is a couple both at home, and they need just a bit help, then at home care makes a bit more sense. For my in laws, they have each other, and don't need much help as of now, so 4 hours a day of an agency caregiver works well for them , and the cost of that is not bad. For my dad who has dementia and was by himself at home, to me, he really just has to be in assisted living now. You can see my posts recently on this topic, and my struggles with it and with discussing it with dad. I'm trying hard to hold strong and firm that it must be assisted living from now on.
You mention that Memory Care is now over doing it. SOmeone must have suggested Memory Care in the first place. While you could step down to assisted living level of care, it may be a good idea to get a formal medical/ psychological opinion on that.
for example, for my dad, I have reasonably shut down the option of going home (which literally exists. his home is still there , empty. Why me and my co-POA brother have not pushed to sell it yet...another topic).
However, he has been lookkng to buy a house, condo, apartments, in my area. I thought I shut that down.
The assisted living where is he at has three levels, AL, MC and then a seperate unit of independent living housing. Those apartments are nicer, bigger, but you get no services except optional 3 meals a day. The sales manger of the place called me today to tell me that my dad was demanding to look at the independent living apartment that has opened up. I'm glad she warned me. So aggrevating. I thought I had him convinced that he must stay in AL, if anything then move to MC. so annoying that he is looking at indep living against my words!
For your father, some MAJOR changes have occurred , which are irreversible. The death of your mother/ his wife. His decline in physical / mental health as you are alluding to. These things just cannot be re-captured. So I think this factor needs to be considered as an important factor. Sorry that you are going through this.
Another from my backlog of tales..
An interesting man, up to date with the news & current affairs, good to have a chat & a laugh with. Appeared happy enough but always scheming to move: back to his own house/to an apartment/or to an independant living unit.
I suggested that if he was independant to live alone, then he could arrange it himself, yes? "Oh that's what SHE says!!" (His daughter).
Said he was perfectly capable of looking after himself. Cooking, dressing, showering. He just needed his daughter to pick out a new place, fix up all the money side & buy all the furniture he'd need. Then he'd be fine.
I asked about the special furniture like electric bed, commode, lifting hoist. Blank look. "I won't need THAT at HOME".
Home was indeed a wonderful place where his hemiplegia from stroke & amputed leg from diabetes complications were restored.
That's one tiny example of 1000 things that can go wrong in one day for an elder with dementia living alone. It's simply not doable and your brother is sadly mistaken, unfortunately.
See about a trial run in AL IF such accommodations are available in dad's current facility. Otherwise, leave him be.
Hiring 24/7 care at his home is very expensive and your Dad would probably refuse and “fire” the help . I also do not recommend having Dad living with you or another family member , Dad will only decline and become more unreasonable .
If you take him out of a facility it will be that much harder to get him back in one . He will be difficult to remove from his home .
It’s not about what Dad wants anymore , it’s what Dad needs which is 24/7 supervision , IMO in assisted living .
You already had aggression issues with him at home, that could certainly happen again as he becomes more unreasonable again as his dementia progresses . Dad sounds like the type that will not listen to family tell him what to do at home .
My mother had dementia and she became impossible and the doctor told me that those with dementia often reach that point where family can not care for them any longer because they don’t want to be told what to do by their adult children. They have to be in a facility .
Good luck.
Assisted living sounds like the right place for him. I would not try to transition him back to his house with live-in caregivers. It's usually not a good idea.
Leave him where he is for now but look for a nice AL that has a good social community for him instead.
living alone is not a safe option.
We remind her this was her idea. She insists she doesn’t need anyone. She is fiercely independent, still. Yet if no one was there she would not remember to eat, bath, dress, put in and charge hearing aids…
in the 9m since we’ve had the caregivers she continues to decline, speaking less and getting more Agitated - she’s advanced from borderline mild/moderate to moderate dementia. Medication changed recently too.
it’s a lot to manage financially, time wise and emotionally - we have POA, now also DNR, house in irrevocable trust.
Mom and I took care of all the elders before her and she got the LTC insurance only for at home care so she would be able to age in place.
now I’m living my MSW thesis - “women in the middle - the sandwich generation.”
We’re managing but it’s a lot. You would need allies and support, live-in help and people who care and will keep him engaged. We have good friends and neighbors. Still, it’s a lot.
I’d speak with his provider and see what they suggest for your dad. it is possible but only if you have a village. Hope this helps.