Husband in nursing home with dementia as well as secondary progressive

@chis54 When I had to have these difficult conversations with my Mom, I turned to the social workers at the assisted living where she had been a resident for several years, and at the hospital where she was being released to after-care for help in choosing how to say things. Both were more than willing to help (though it took me a few weeks to connect with the SW assisted living since she covered 5 facilities including their nursing home.)

One thing that helped with my Great-Uncle who always wanted to go home was to gradually bring things he associated with home and fix up his room. Does your husband have room for his favorite chair or a familiar picture or mirror? Framed old family photos or an old album (more likely to be remembered than current pics)

It's so hard to know the right words. Just keep reassuring him that you love him. Refer to his aides by name and call them "his personal helpers." If allowed, give him little pre-wrapped treats to share with them - Hershey Kisses & mini-Snickers were my Mom's favorites to hand out.

That must be very difficult to deal with. You say that he has dementia. And secondary progressive ? I’m not familiar with that. Is that MS, Parkinson’s, aphasia?

It’s my understanding, based on my reading and experience, that with dementia, a person is not likely able to process and retain information. So, hearing the truth about something that upsets him may likely be of no benefit. If he can’t process or remember it, he would just get the upsetting news over and over anew.

When my cousin was in Memory Care, I told her she would go home as soon as she got her health back and doctors approved it. That kept her pretty content. Eventually, she forgot she wasn’t at her home. My experience was that keeping her happy in the moment was what worked best. Trying to get her to accept the truth of the situation was just not realistic, because she wasn’t capable. And, even if she did, she would forget, so we’d have had to go through the ordeal of her getting upset with the bad news over and over.

I’m not sure why getting hopes up is bad. For someone who reasons and has memory, I agree, but for those with dementia, it’s a different reality in their mind. Everyone is different, so you should use your own judgment about what is best.

It took me a while to realize that people who have dementia may not be able to be happy and content. They are often confused, angry and demanding. It’s not their fault nor ours. It’s damage to the brain and the regulation of emotions may be impaired. But, their upset is likely temporary, An hour later things may be completely different.

I tried to focus on keeping her in a safe and caring environment with support and love. I knew that was the right thing and that was good enough for me.

Do what you feel is right. That’s good enough.

I guess I wonder what would it accomplish to tell him that he won't be coming home, just change the subject. My cousin who is in a facility in the Bronx, thinks she is in Florida. She mentioned she didn't know when she was coming home. I told her to relax & enjoy her vacation, stay longer and not to worry about coming home. Seemed to calm her down. She can never live alone, she would be a danger to herself.

I so appreciate the feedback! By the way, yes, I meant Secondary Multiple Sclerosis. I understand completely about not telling him. I always encourage him to keep working on getting better especially with the therapy that he does get. (Physical and Occupational). Just this past Sunday when I was getting ready to leave to come home, he said wait I have to get out of this bed to go. I had to explain to him why he cannot come with me. He forgets at times that he cannot even get out of the bed without assistance from at least 2 people. So, from what all I have heard here, I believe you are correct in what is the purpose of telling him he will never be able to come home. It breaks my heart and of course sometimes I feel so bad and guilty even though I am doing nothing wrong or would even want to. He will tell me one day that he wants to come home and the next he never mentions it. He is only 66 and of course I have a hard time even believing he has dementia the age. I realize now that age does not really matter anymore, really concerning anything. TY again for the feedback and if you ever want to mention something else please know that I will be very appreciative of it!!

My goodness, that’s a lot to handle. I can see your dilemma, but you sure do seem to be very devoted and attentive. That means so much for a person who is living in AL or NH. Even after my cousin had significant decline, she would regularly, proudly say to me….I have a support system! I couldn’t believe it. I figured she heard the staff say it about her and she picked it up. It was true and it made her feel secure, though she lived in the facility.