Bring him home from assisted living?

Roxiedog

My husband has been in assisted living for more than a year, and he’s doing very well - made friends, involved in activities- but the problem is that I am very lonely without him.  He is mid-stage AD, but completely verbal and funny and warm.  His short term memory is gone, but he’s sweet, charming, and worried about me.  It’s hard for me to “move on” when he is right there, just not independent.  I’m not supposed to visit him very often because he is more involved with that community when I’m not around, reminding him of his life with me.  I could hire live-in help for the price of his AL facility.I would like to hear thoughts from others.  Thank you.

Nowhere

Hmmm. Maybe if you remind yourself why he moved in initially? Is he in assisted living or memory care? Maybe you could bring him home for a week trial period from assisted living to see how he adjusts and you manage? 

I think about this often, too, as my husband has progressed perhaps past some of his troubling paranoid and delusional behaviors, but then I’m cognizant that perhaps he’s calm because his world has shrunk and he feels secure in a controlled dependable routine.

Loneliness is heavy for me, too, after marrying young forty eight years ago. When he was still at home (2+ years ago) I was isolated with him as he suffered delusions and paranoias when friend and family came and went or we visited them.  I didn’t know rage and despair until the rough middle stage Alzheimer’s passages and it was then that I felt like both of our boats were tied together and sinking. I still love him dearly, but sadly we do better apart than together with uninvited Alzheimers in our marriage. 

Good luck to you moving forward. 

Roxiedog

He is in a unique AL where they put together the residents who aren’t ready for memory (locked unit, less privacy, more progressed illness) but aren’t sufficiently independent for regular AL.  It’s an innovative program and they really encourage social interaction as a priority.

And, you are right, I am needing the help.  I’m in therapy, but my friends have died or are sick themselves.

Nowhere

Does he have his own room? I’m not kidding, but maybe you could stay overnight with him a a night or two per week? Would the staff even care? I stayed with my husband when his female roommate was actively dying as they were “a couple” and they both required extra caring hands. When people pass in memory care, I’m afraid they are left to go it alone in the absence of round the clock family members. The aides and even hospice all-be-it, caring, do not have time to sit and comfort the dying. Off topic, I know. I’m sorry.

Roxiedog

Hi Nowhere - yes, he has his own room - they think it would “destabilize “ him and that he is doing well with routine scheduling.  I’m sure they would let me, but all the advice has been to limit visits and avoid the chance that he might “begin escape behavior “.

They seem to be doing a very good job for him, really!  And I’m so glad for him - but it feels wrong because we are such close friends and we miss each other and cry together over the phone.

Roxiedog

p.s.  he’s not asking to “go home,” only to be with me.  He knows me and others very well, but he has no insight into his condition and the implications of it.

Gig Harbor

What was the event that made you decide to place him?

Joe C.

Roxie, I certainly understand your desire to bring your husband home, I placed my wife a year ago and I miss her everyday & sometimes think about bringing her home. Then I remind myself how difficult it was when she was home and that things are going to get increasingly challenging as the disease progresses. Before placing DW I felt extremely lonely & socially isolated because I needed to be home with her and outside social activities were very limited due to her disease. Now that she is placed, I push myself to get out with other people and do things that were not possible pre-placement. Possibly you should sit down with the AL staff and let them clearly hear the negative impacts not visiting is having on your health. The AL staff should be considering the well-being of both you as well as your husband when they make these visitation guidelines.

MaryG123

I’m not at this point yet, but have often wondered when members here mention that they are not supposed to visit their LO with dementia.  That would make me very uncomfortable, for multiple reasons, and I suspect it is easier for the staff that way rather than what is best for the patient and their family.  Am I being too cynical?

Ed1937

Mary, I think it is hard, but without the period for acclimating, it will likely take much longer for them to get acclimated to their new home. And if they act up when people visit, I'm sure that in itself is also hard. Then you have to leave, making it worse again. Every time you visit. People who work in these places have seen enough that they probably know what they're talking about.

Roxiedog

Gig - we had moved to a new town the year before he was diagnosed.  We had one friend there, but Covid hit and our friend was afraid to be with other people, so we were very isolated.  All the caregivers quit, adult day care centers closed and we were alone with each other.  It was a small and charming town but terrible for our situation.  My DH’s neurologist suggested that we sell our new home and move to be near my children in a distant state (for support for me and better resources for DH).  As Covid was increasing, my DH had to be hospitalized for a different condition, then moved to rehab.  He was gone several months, and when he returned he was even less independent than before.  I tore the meniscus in my knee, couldn’t drive, and we were in trouble.  I had a minor surgery with rehab and he went into respite at a local, locked down (Covid ) AL facility that was terribly understaffed because of Covid.  We realized that we had to leave so he was flown with medical escort to his current AL in our new city near my children and I stayed behind to sell our home so that we could afford the AL.  Then I rented a small apartment in our new city, and here we are.  That is why he is in AL.

Roxiedog

Joe - the staff have been very accommodating, but they are afraid that he is going to try to leave to get to me.  If he becomes an escape risk, he will have to move to memory care which would be a terrible and otherwise unnecessary change for him.  I am a trigger for him to remember that he is over attached to me- obsessively so.  They don’t want to have to add any meds if they can keep him happy and distracted, but when I come around he becomes desperate and agitated about my leaving.

Roxiedog

and Joe - I do get to visit him, anytime I want, but it’s tricky and stressful.

Roxiedog

Mary - I understand your concern.  I think the facility he was in previously was partly that way but this place is trying to keep him free and with his friends as long as possible.

Roxiedog

Ed, I agree - they have seen this over and over.  They know how to help the people adjust as best they can.  It’s about developing new friendships and new routines so that they person with dementia can feel safe.

toolbeltexpert

Roxie I am right there with you as far as wanting to bring my Dw home, even though my situation is totally opposite of yours. I visit everyday for hours. today I had to do a pickup so I was gone most of the day. I get depressed if I don't visit. I haven't missed a day. though some days are shorter and some days I go home and do stuff then go back in the afternoon. 60 miles round trip.

I agree with Joe they should be considering you both, sometimes they will ask how I am doing. I remind myself why I placed her and all the triggers at home haven't gone away. 

But oh do I want to bring her home! I hate being alone.

Roxie you said something that hit me, he is doing very well, that is so awesome that he is fitting in the other day my Dw said these words,"I don't fit in here" that broke my heart. COVID is running it's course, only 2 or 3 haven't had it, my Dw is one of them. They have moved her from her room and that is making it harder. She has had 3 roommates catch covid, they have run out of folks for her to share a room.

None of this is easy!

stewart

Roxiedog

Stewart  - thank you! I am just so very lonely without him. I don’t think I’m going to be able to see him as much as you see your wife because it just makes it harder for him when I spend time there. And he is very happy when he isn’t noticing that I’m gone. this is a very hard thing to live through. Thank you for your comments.