Another wedding anniversary "celebrated"

Last weekend was our 34th anniversary. I celebrated it by feeding my husband pureed food for lunch, and then attending my sister-in-law's surprise 50th birthday party. No one knew it was my anniversary.

DH continues on in the very, very last stage of dementia at his nursing home. He may be at this point for years to come, I'm told. There's no declining from where he is now, except death, at this point. I suppose he could stop even swallowing the pureed food he's eating, but other than that I can't think of anything that could decline. Twice in the past 18 months both hospice and the nursing home thought he was at the end… he came back from those episodes. I recently found out that the diagnosis they're using is "degenerative neurological condition." Basically, no one knows exactly the problem with DH.

He's been in his facility for 4.5 years now. Staff has changed, and he's been moved out of the memory care side to the regular nursing side. Here's what's funny - the CNAs that work with him tell me all the time about things that DH has said. He doesn't talk. He makes a few sounds, but they're just sounds, and not made very often. When he was still able to talk, he didn't say the types of things that they're saying he might say. I haven't heard a real word out of him in over a year, maybe 2 years. I like that the CNAs think that he can say things - if they think that then they're going to talk to him more and treat him more like a person, I think.

I also find in this stage that it is easy to think that he knows more than he does. I clearly remember 5-6 years ago when he could still talk somewhat and move around a little. He couldn't follow the simplest of directions, he clearly didn't know who I was or who our son was, and what he said made no sense. But now that he's quiet, everyone tends to think that he understands everything going on around him and just isn't able to express himself. Even I find myself falling into that sometimes. I just wish I knew what he DID understand. My brain says "nothing". My heart says differently, even though I know it's just wishful thinking.

Still visiting 3-4 times a week. Still working full time. Still waiting to begin life after dementia. Still stuck and unable to move on. 18 years since the first visit to the doctor for memory issues. Over half of my long marriage has been dealing with dementia.