Another wedding anniversary "celebrated"

JoseyWales

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.

frankay

Oh my goodness! I could write this same story except that diagnosis was 9 years ago with issues before then, in MC for last 3 years, bedridden for last 17 months. Same everything as you're dealing with. Very little decline because where is there to go? He's eating and drinking just enough to stay alive. He just lies there, occasionally moving his arms and legs and looking around the room. This could go on and on because heart and kidneys seem to be functioning. We celebrated our 55th anniversary but who cares! I go in everyday to feed him breakfast and lunch. I totally get what you're feeling. On the positive side I guess, I'm getting to be a whiz at doing crossword puzzles while I sit there with him. When people ask how I'm doing, I say "Just living the dream!"

JoseyWales

Yes! You are EXACTLY where I am! Except I play a game on my phone.
My DH is 62. Except for his brain, he's in perfect health.

Jgirl57

“Happy” Anniversary! Thank you for sharing your current update . Interesting diagnosis ; This whole disease is so bizarre.

Goodlife2025

So scary to think this can go on for some of us for so very long. DW in late stage 5 diagnosed at age 47 with early on set signs maybe back to 38 years old. Just turned 50 so really dealing with this for 12 years. It is scary but I try to wrap my mind around the fact that with no other medical issues she could linger in stages 6-7 for another excruciating 8-10 years. Not prepared for it but from this site I do understand now not all those with early onset go quickly.

Beachfan

Josie, my heart skips a beat every time I see a new post from you. I know I would be in your shoes, if not for an undetected gastrointestinal bleed that took my husband in 4 short days. I am eternally grateful for that turn of events, as cold and callous as it may sound. After 11 1/2 years at home, he was in memory care for 17 months, knowing no one, not knowing where he was, just existing. I don’t know where I would get the strength to carry on, if he had just lingered. At three years into stage eight, I still miss him desperately, love him with all my heart, and have re-entered some semblance of a “normal” life. I think about you often, and all those in the throes of this horrible hell of a disease. Bless you, Josie; and bless everyone along this journey. 💕💕

JoseyWales

https://alzconnected.org/discussion/comment/276457#Comment_276457

I think about you, too. And you don't sound cold or callous. I have said many times that it is time for my husband to pass. I feel horrible when I say this, but his quality of life just isn't there. There is no coming back from this disease. Your husband passing when he did was a blessing.

A very long time ago, during a discussion on here about "how long", I remember saying something to the effect of not being able to imagine doing this for 10 -15 years. Someone at the time reassured me that it wouldn't go on that long, because he was so young and those young always progress quickly. Well…..

This stage is much "easier" than the earlier stages. I feel so much for those of you who are going through it still taking care of your loved ones at home. I wish there were more resources and support for dementia care.

JoseyWales

https://alzconnected.org/discussion/comment/276442#Comment_276442

I think this is one of the worst things about this disease - not knowing how long. Not knowing exactly what will happen. Not knowing how to make plans. Your wife is a little younger than my husband was, on that same path. It changes our entire adult life. What should be a time in our lives where we start enjoying "mid-life" is taken over with dealing with dementia. Making plans for a future and retirement - that's impossible. I missed out on trips with my husband, building our dream house like we planned, even enjoying the high school graduation of our son.