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Patty84 Asked March 2023

Just received a call that there is a spot for my husband in a dementia unit & they can take him as early as this afternoon. Now what?

Obviously I’m overwhelmed emotionally. Today is Friday. I told them early next week would give me time to get things together. I have been touring care facilities & getting our ducks in a row, but had been repeatedly told no one had a spot for a man. Now they can take him today? I don’t know where to start. He has anosognosia, so complete denial he has any problem other than occasional “brain fog”. Refuses to take any medication other than Xanax. Last neuro-psych evaluation puts him at moderate dementia with increasing Parkinson’s symptoms. He is extremely agitated at night although he hasn’t been physically violent (yet). It’s a step that needed taken. At the moment my head is spinning.


This care center is about an hour from our home, but has a sister facility in our town that he can be transferred to when they have an opening, so he shouldn’t be so far away forever. He doesn’t know I’m placing him. Although I can discreetly pack some clothes I’m unsure how to pack some of his personal items he would probably like to have. I can make additional trips early on to take him some things, although I’m sure he’ll be angry with me so I doubt I can stick around to help set up his room. Should I just pack some small things for now or what do you recommend? He can take things like his recliner, bedside table, TV, laptop, etc. though I’ve been discouraged from taking his cell phone, Do I wait on taking the bigger things or would that help him settle in sooner? It’s going to be hard enough to move him, much less set him off by seeing his things packed in the car, but I can’t take them ahead of time. How do you do it? I can’t think of anyone off hand that could come to the house to move the stuff once I get him out the door, although I could make a second trip the same day. I appreciate any suggestions. It will be hard enough on all of us as it is.

cxmoody Mar 2023
When we moved my mother in, the facility kept her busy while everything was arranged.

Perhaps a friend or relative can be loading up a moving van while you take your hubby out to breakfast, or lunch. The friend can drive behind the moving van.

The friend can direct the movers to set up the room. You can join the friend, while the facility keeps hubby busy.

No matter how it goes, it will be hard. Maybe for quite some time.
Come back here. We will listen.

MJ1929 Mar 2023
Enlist the help of the facility. Trust me, they've done this a million times, and they'll take care of distracting him, helping you set up his room -- whatever needs to be done. The best thing to do in my opinion is to ensure he never sees you there while this is going on, so he doesn't connect you as much to the permanence of this move.

Taking him this afternoon seems sudden -- I'd take him tomorrow. Don't worry about packing things unless you can do it when he's asleep. Make two trips tomorrow if needed -- one with him, then another with his clothes and toiletries. His bigger items like the chair, laptop, etc. can wait until next week. You can find someone to assist with that by then.

Just breathe -- I know it's really, really hard.

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Patty84 Mar 2023
UPDATE: I packed up 3 boxes with some of my husband's things and went up the night before I intended to take him so I could set up his room. I was told to keep his (flip) phone for a while otherwise he might be calling people non-stop to come get him, and big things like his recliner & side table should go up later after he's accepted the fact that it is his new home. (?) Apparently I assumed too much and it did not go well. Again, although he has moderate dementia, he still showers, shaves, brushes his teeth, etc. himself. I realize he will lose the ability to do this, but for now he can. The room is semi-private and shares a bathroom with the room next door. The bathroom consisted of mirror, sink & toilet. No storage. I asked if he needed some type of bath caddy for his things and was told No, that they (the aides) would keep his things and bring it to him when he needed it. I knew he couldn't keep his razors, but thought the rest could stay with him for a while. I was then told it's best that I also keep his partial dentures at home as it might be "lost". The shower is down the hall and I was told that most residents only shower about every 4 days, and a "community" liquid soap and shampoo are all that's needed...he wouldn't really need his own. Is there a place he can keep a stash of snacks? Nope. It all has to be kept near the aides. In the room, there was one accessible outlet. I brought a power strip with about a foot long cord that he uses at home to charge his phone, laptop, memory clock, and music player (just lift the lid & it plays pre-recorded music). Nope, no extension cords allowed, per state rules...and laptops aren't permitted because too often residents access "inappropriate" things and it becomes a problem, but he could have a tablet & a smart phone - which he doesn't have either of and would have to learn to use. In fact, there is no internet in the rooms. He would need a hotspot. (His laptop only has 2 icons on it - Facebook & email. He doesn't actively search the internet for anything or really even type, he just mostly scrolls FB.)

Obviously, I was naive in thinking that I could set his room up close to what he has at home. And I understand that he is not in the general population of the home where he might have more liberties, he is in the locked dementia unit. But I thought if he had the comforts of home, he might settle in better. I couldn't even put his clothes away. They said they would unpack for him so they would know what he had. The courtyard isn't accessible as the state deemed the walking path a tripping hazard, so unless I took him somewhere, he can't go outside there.

I was already thinking about all that he would be giving up to move into a facility - his dog, his family, his home, his freedom. And I know that the Alzheimer's will eventually take all that, but every time they told me what he couldn't have out of what little I took there, it was just soul crushing. They tried to reassure me that its harder on the family and that the residents usually adjust within a few days, but I just couldn't picture leaving him there with virtually nothing, completely out of his element. Then they said that I would notice what seemed like a significant decline once he was placed, but it wasn't that he really declined, it would be because I didn't realize how much I actually did for him at home, so not to be too upset by it. I think he'd decline out of sheer boredom & lack of stimulation. It was awful. I brought his stuff back home with me and ugly cried all the way. I hadn't actually toured this home, but it's a sister facility to one I had. I don't remember residents' rooms anywhere being so empty. Ultimately, I let them know I would not be bringing him in. Unless he gets physically violent or significantly declines at home, I'll keep him home longer and just do what I can to make it work, but this place was not the right one for us.
Way2tired Mar 2023
So sorry that facility wasn’t the right one . I have a similar yet different issue , My FIL is in AL and could use MC because he refuses showering and will not change his pull-up often enough, resulting in leaking on all furniture . (He wasn’t doing it at home for us either which is why we had to put him in AL, leaking pull-ups everyday at my house and no showers , plus he couldn’t be left alone at home , because he would try to cook,) He’s very intelligent though still and may not fit in with the other residents in MC . I have looked at one MC so far that didn’t appear to be nearly as restrictive as you described . The private rooms each have their own large refrigerator/freezer and sink and cabinetry for snacks. Also its own full bath, with cabinetry , like at home . However , thank you so much for sharing , it gives me some more things to look out for and ask as I tour MC facilities. I too am hesitating as my FIL is still very intelligent in many ways , and he will not feel as if he fits in at MC . If he would only comply and shower and change pull-ups in AL , he could stay in AL. He already complains he doesn’t belong in AL , he will still notice that he is more high functioning than those in MC .
That facility you went to seemed like a very restrictive MC unit . Perhaps others aren’t as restrictive about having some personal things . Perhaps some have more than one level of care . Maybe keep looking as you need to be safe too and to take care of yourself .
Best of luck .
sp19690 Mar 2023
I feel for you and what you are going through. Placing him is necessary but that doesn't make it any easier.

Way2tired Mar 2023
Maybe the facility has some suggestions .
Also if you make additional trips with additional items , he may still be very angry . I made that mistake with my mother . It didn’t go well , she was very agitated when I came.
So the next time I came , I called the facility from the parking lot . They sent someone out to get the items from me and they brought them to my mother’s room .
Tough situation . I feel so bad no one can help you with the move . Best of luck .

Fawnby Mar 2023
Think about the end result - that he’ll be where he’ll be cared for, and you’ll be at home without the pressure that you’ve been suffering.

Good luck, and I hope it goes well.

NYDaughterInLaw Mar 2023
Breathe. Recognize that no amount of preparation will make placing your husband any easier on him. He has dementia. His brain is broken. He will be angry. His disease is only going to get worse. If it's a good facility and they have a place for him is being an hour away really the worst thing? Might being an hour away give you the breathing room you yourself need to adjust to the change and be someone other than his caregiver?

I know two families who have been waiting for 6+ months to get their loved ones into memory care and it's taking a toll on them all. One family the mom nearly burned her house down were it not for a neighbor seeing smoke coming from the kitchen window. The other family the dad is becoming belligerent - threw his walker at his daughter - and he's sundowning earlier and earlier in the afternoon and the meds are no longer controlling his symptoms.

Just because he calls doesn't mean you need to answer the phone. Again, his brain is broken and your conversation will not change that. You cannot reason with a broken brain. He will get the care he needs. You will get peace of mind knowing he's where he needs to be.

Natasana Mar 2023
Last week I moved mom into a board &care AL/MC. As some have said, pack lightly because it makes quick work of things on moving day. What worked for me was on the last two laundry days I just put the clean laundry into a couple boxes. It was clothing for about a week. Mom never noticed. I had previously requested additional hospice supplies so I just put all those in a box as well. The night before the move I put the boxes and a few other things in my car. Mom still never noticed. The morning of, I put her walker and her medications in the car. And off we went. I told mom I was going on a vacation and she was going to stay with caregivers while I was gone. She was most concerned about who was going to feed our cats while she was gone. When we arrived mom was escorted to living room to watch TV while I brought in and unpacked the few boxes. I was done in half an hour. Mom was already warm and asleep in a recliner. Being an hour away is really not a dealbreaker. Anyway, it does give you time for attitude adjustment coming and going. So I visited mom today for the first time since at moving in. I brought a few small things like her calendar and some waffle pads to make the chairs there more comfortable. I'll probably think of more things as time goes on. You don't need to have it all on the first day. Best wishes on the move.
Way2tired Mar 2023
So glad the transition went well for both of you !!! Thank you for sharing your ideas for the moving process . Thank you for sharing a positive story .
Sendhelp Mar 2023
Not sure if I can be of any help, but I am working with a family member just now who cannot be rushed, otherwise she will not cooperate. You need their cooperation to place them unless they are declared incompetent by a doctor or a court of law, imo. I could be wrong. Both persons have rights, yes?

It does not sound like your husband has been prepared and won't be ready this soon. It also sounds as if you are overwhelmed, and your head is spinning. Maybe you are not ready to be rushed into accommodating the facility's offer.
At least not today. Legally, is he beyond his right to receive "informed consent?"

I do think that you need the help of the facility.
However, if you think you can hold on until a room opens up in the nearby facility, you will not have to move him again. That would be a benefit because moving someone with dementia and confusion does not help them.

What is the requirement on taking away his cell phone? Isn't that a red flag?
And you said a dementia facility. Is that a locked ward in Memory Care?

I would wait. When dH becomes violent, (call 911 when he is agitated), he can be placed in a behavioral hospital, get his meds regulated. Then, the transfer to the dementia unit may be easier; him not blaming you; maybe he will cooperate since he cannot come home. We hear all the time about how facilities won't take someone who is violent or a behavioral risk. Have they met him, done an assessment?

Hoping this can go smoothly for you both. Of course you do not want to be in danger, ever. Do what you need to do to protect yourself and your teen living at home. Having someone, almost anyone, nearby as a witness may help.

Guess I don't really have a good answer for you.
Have you consulted an attorney about a patient's rights?
Can the dementia unit legally hold him against his will?
But wishing you and your husband well.

You do need help, do not try to do this on your own.
MJ1929 Mar 2023
Personally, I think she should take advantage of the opening when it presents itself. Imagine him getting violent on her one night and there's nowhere to send him.

It's always better to handle the big stuff before the crisis, if at all possible IMO.
Hperrin923 Mar 2023
Anosognosia is incredibly difficult to live with. My husband, who is now in a memory care community, suffers from this and constantly wants to come home. After he fell down the stairs and spent several weeks in a rehab facility, I was given six days to find care for him. I got that time limit extended to eight days and spent a week finding a community nearby. They had no single rooms (which he needed), so I paid for a double room without a roommate and placed him on the waiting list for a single. It was expensive, but a single opened up in four months. My father-in-law had to be placed in a facility one hour away until a room opened up in a local nursing home; that took about six months. They do let you know as soon as there is an opening.
I hate listening to my husband's demands to come home, but I also know that I could never care for him without full-time help. He is very resistant to my suggestions and feels that he can do things that just are not safe. I would never be able to keep him off the stairs, and I would definitely need someone to stay awake at night; he often gets up in the middle of the night and thinks he needs to go to work. The hour's drive will give you some time alone to listen to the radio or reflect on things other than his care.
It's one thing to care for someone who can cooperate in his care; it's another to care for one who doesn't think he needs care. Your task at this point is to keep him safe and take care of yourself.
By the way, I'm not too good at following my own advice. I still obsess about bringing my husband home.
Good luck!

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