2 months in advanced care

caberr

DH went from the hospital to an advanced care facility on July 11.  I was hopeful he would be moved to the memory care unit, but it didn't, and I don't think it will happen.

He is unable to stand or walk.  He is completely incontinent, and his speech is just a jumble of words...word salad.  Every so often he says something clearly.  He is on hospice so gets a little extra help.   When he went into the hospital, he thought I had multiple boyfriends.  I believe he still thinks that and over the past 2 weeks has been very agitated and yells a lot.  Especially at me.  This is not him.  

For the most part he knows me and the kids.  Sometimes looks at us trying to figure it out.  He's asked me what he's done which makes me think he feels like he is being punished and that's why he's there.  He has said he is leaving, and I tell him ok I'll go with him. He can't get up, so he lets it go. 

When I visit, I have them put him into the Broda wheelchair and take him for walks around the facility and outside.  Sometimes I take him down to the memory unit so he can be around other people.  He cannot participate in anything, but I feel he still needs to see people besides me.  

They have added Ativan for his agitation.  I wonder how long he can live like this.  He is healthy otherwise and it is just so unfair.  

Being home alone is hard.  I miss him terribly, but I tell myself he is still alive, and I can see him every day.  The kids and I decided together he would go to the facility.  They all agreed it was the right thing to do.  I was expecting too much and have finally realized there isn't much more to do but be with him and let him know I love him.  

M1

Glad to hear from you caberr, even though it sounds like a very tough road.  Glad you have hospice involved.  Honestly, with what you're describing, my bet would be that he won't stay like this for a really long time.  Hard to know what will be the turning point though.  I think just being there is about all you can do at this point.  Again, I'm glad you posted, hope you will continue to when you can.

dayn2nite2

Sorry this part of the road is so tough.  I think the only thing you can do is enjoy his remaining time as much as you can.

toolbeltexpert

Caberr when I saw that date 7/11, that's the day my dw started from the er to geripsych now almost 3 weeks in nhf. She has declined alot. Still able to feed herself and toilet, and she still knows me. Like you at home alone I miss her so much. I visit 2 times a day. I think it's harder on me when I leave, because I can just walk around her and she doesn't remember I am there. My dw sister is 1000 miles away but she supports all my decisions. I have started walking dw out on the little terrace they have fresh air and birds. So much of what you wrote i could have written. I am glad to see your post. 

Stewart 

caberr

Thank you.   Yesterday he has started to hurt himself.  He has a couple of large scratches on his chest.  Hospice has started him on haldol so I am hoping today he will be calmer.  

Stewart, I do the same thing when I leave.  I kiss him, tell him I love him (I want those to be the last words I say to him because you never know) and then move out of his view. He doesn't even know I am there so slip out.