The changes in Kevan have been so dramatic that he has asked to come home. It will be a 3 week trial period with monitoring by the care community. I have no logical reason to refuse. I asked what does he think has caused this change in him and he has no idea. He just said " I don't feel like I did. I feel like my old self." I don't understand but I will give him the three week trial period to see how it works out. He will not be taking on any of the responsibilities of the house so hopefully the lack if stress will make it easier for him.
Be very careful about this, Jazzy. Make sure he doesn't lose his bed at the facility. Sometimes people do so well in a facility that they and their family think they should come back home--when the reason they are doing so well is because of all the good, 24-hour care they are receiving from three shifts of professionals. Once they come home, without all those supports, they just go backwards again. You have been through so much--protect yourself.
I hope this goes well for you. Make sure to have a good support system in place. Have help lined up for when you have to go shopping or dr appointment for yourself. You will not want to leave him alone at all now. As you have someone with him 24/7 now. Things can change so fast, will you be able to place him back if needed. He may no longer have stress, but your stress will rise.
Jazzy, think very carefully about his return home. Just being home without 24/7 care may be stressful for him and you. As you know, I brought my FTD husband home after a failed 2 week stay at and ALF and a subsequent 3 month stay at a psych hospital. The conditions were that I had a 24/7 male caregiver who could handle him and protect me if need be. I don't regret having him home but even with 24/7 care it hasn't been an easy journey. And the FTD behaviors are often just below the surface even with meds.
Elizabeth* brings up a very good point about the possibility of losing Kevan's bed in the facility, so they should give you assurances that they will take him back if the trial doesn't work out - the psych hospital told me they would take him back day or night if it wasn't working out at home.
Jazzy, please see my special note to you in the "FTD and volatility in home caused by mood swings" thread that I just started. I know that you will end up doing what is best for your DH, but do also consider what is best for you.
"I have no logical reason to refuse" you say. Yes there is. You need to read back through your post if you have forgotten what life was like with him home. As others said, the 24/7 care, the stability, the expectations they have from him all probably go into the change in him. Maybe consider waiting another month to see how he is, if he continues on meaning a new phase in the disease, or if he goes back to the old behaviors.
We have a three week time frame to try this out. His things will stay in his room at the LTC and he keeps telling me that if I feel he needs to go back then he will. He is afraid that I will break down with him here and he is also afraid that my being alone so much will do the same if he isn't here. He is really torn. They are bringing community care that we had before with PSW's and respite at the same LTC that he is in now. I am going to wait until the beginning of the third week to make any decisions. I remember very well what it was like when he was home before so I will be taking a close look at this. Thanks for your concern
It isn't unusual for someone with dementia to suddenly have a major upswing which seems like a recover. When it happens one should enjoy it but be prepared to lose all gained ground quickly.
As others have said, the LTC facility might have helped by brining much needed routine to his life.
You are making sure you have a support system in place and you have a set time for the trail. You don't seem to be making any rash decisions.
He spent two nights here and had nightmares and lots of upsets during the night and decided this morning that it wouldn't be good for him to move back.There was lots of daytime anxiety. He had his night problems and I didn't sleep.
I had expected this would happen as he stayed over a couple of nights at Christmas and I had to take him back. He forgets these things and then decides to move back again. I will just try to find away to get him to realize that this is not the best place for him the next time he wants to move back. Maybe this will be something that will happen regularly for awhile and I will just have to find the right words to get him to remember the bad nights here. This disease is crazy!!!!!!!!!.
I am glad no one was harmed. I suspect he is not going to remember that it is not going to work out. But I think you needed to try for your own sake.
My wife asks on occasion to come home for a weekend (or to move home). Her family and doctors think this would be bad for her and I agree. I learned to just say no, I don't give a reason. Fortunately she doesn't obsess about it and it blows over. Since reasoning doesn't work I don't try. I think to just say when it comes up again that last time he was very unhappy.
I agree...you had to try it for your own peace of mind. We just have to do everything we possibly can to not have regrets later. There is so much to be said for the 24/7 care they can provide!
Sorry it did not work out. You went above and beyond for your DH. Maybe the next time your DH asks to come home you can say they are painting and it will be a few days before he could come home. And just keep stalling.
Hi Jazzy, I'm wondering if Kevan's insistence about moving is an attempt to take care of you. He strikes me as a man who always tried to protect you. Even when he was stricken with this disease, he himself made the decision to go into LTC; he did not wait until you had to do it for him. When you moved into your current house, you told us that he was concerned about all the little things that needed to be fixed. And during this latest episode, you said he was torn because he was afraid that your being alone so much would make you break down.
Do you think that the reason that he keeps trying to stay at the house is to keep you from being lonely? If so, then maybe you should try to hide your loneliness from him. If he thinks you are OK, then he might not feel has to help you overcome your loneliness and he might be more content just to stay in the ALF, where he clearly is more comfortable.
I had to let him find out for himself that he can't stay here as he is more comfortable and safe feeling there. Yes he is trying to keep me from being lonely but he also worries that I might fall and there would be no one to find me or that I may get the flu or something serious and again I would be all alone. I keep trying to reassure him that I have help if I need it but your right Myrtle, we have always looked after each other and now he has all kind of care and I don't so he is worried. I don't know how to take that concern away from him. I have tried to find someone that I can say is here to help if I need it but as someone else said, when you get old it's hard to make new friends and find people to gather around you. Having just moved here adds to the problem. I guess i will just have to bring out the old dementia caregiver stand by" Dementia fiblets"
Jazzy, I was going to wish you well, then I continued reading. I'll still wish you & your husband well...I think he is exactly where he needs to be. Things seemed to have worked out just as they should have.
Just a thought--would you benefit from a "Voice of Help" button, that you wear around your neck while you are alone, and could push if you had an emergency? I got one for my mother after she had her cardiac surgery (lived 400 miles away), and she insisted she did not need or want it. This was just after my father died, and she was alone in the house. I told her it wasn't for her, really, it was for me--to give me peace of mind. I said she would not want me all those miles away to be worried all the time. So then and only then did she accept it. So I'm thinking that if Kevan knew you had that button--and when he forgot, you could remind him again--it might calm him.
Oh Jazzy my heart almost stopped when you wrote that he was moving home. I too vividly remember your prior posts. The problem here is that HE cannot decide to move anywhere or where he will stay. He is no longer calling the shots. Please get some rest and put your feet up. So glad that no one was hurt namely you. As mim said, he is where he needs to be.
I called the Director of care to tell her our decision and why and had to leave a message and didn't even get a return call.
He of course was the toast of the manor with everyone coming up and telling him how happy they were that he wasn't leaving and how much they loved his help around the place. LOL
He is so happy he is wanted there I wonder if he thinks he wasn't wanted here.LOL I love him dearly but he needs to be there.
I am just happy that they made him feel so wanted and cared about. It is obviously important to him that they were concerned about his leaving.
The Director of Care went to see him and told him she was very worried about him and that they were concerned that he would loss his bed and have to back on the list if it didn't work out at home. He is very tired tonight and will be heading off to bed early.
I am exhausted and I think I will be off to bed early tonight.
I had a great support group meeting last night. It will be a good support for me.