DW now being discharged from hospice after 6 months on hospice.

Vitruvius

It's been one year since I had to place DW in an MCF. Her care has been very good there. Six months ago she was experiencing a significant decline and the MCF recommended hospice. She was accepted without issue as she was losing weight, having trouble swallowing, required hand feeding and had become unable to walk without the significant help of two people. Cognitively she had also significantly declined. Even after placement she enjoyed browsing picture books even though she could no longer read. Now she doesn't recognize what a book is. Her ability to communicate is greatly reduced.

However her non profit hospice is discharging her because they said she has stabilized and cannot be assessed as potentially dying within six months. They claim that Medicare is becoming stricter about this even for dementia patients. I can't help thinking it's just mean spirited bureaucracy. DW is still dying, just not fast enough for them.

I visit every other day and hand feed her dinner. She still brightens when she sees me and very occasionally will call me by name. She can recite rote phrases, often starting a sentence with "I think I need..." but then this will trail off into something incomprehensible. She is trying to convey some issue but can't, it breaks my heart. When I leave I also say "I love you" and she will usually say "I love you too" clear as can be. As with everyone here I hate this disease.

I read and post here less frequently because I just can't stand thinking about my poor wife's misfortune all the time. I am still adrift, my terrible skin disease is in remission however, and I'm trying to find a balance between still being my DW's husband, advocate and caregiver and some level of a "separate" life, a concept I have trouble accepting.

GG06

Vitruvius, my heart breaks reading your post. I fear my husband will suffer the same awful path as your wife. He has FTD with semantic and behavioral variants. I understand why you don’t visit the forum much, but want you to know how much your posts have helped me. I’ve gone back and read all of them a few times since I joined this past February. I wish I had comforting words for you, but they all seem so hollow. You are a wonderful caregiver and advocate for your wife. You are doing the very best you can in an incredibly cruel circumstance. Please try to take care of yourself too.

M1

Glad to hear from you V, even if the news is not good. I haven't heard that Medicare is tightening down on this, but a lot of rule/regulations are shaking out in the "post-pandemic" period. They weren't allowed to cut servicies for a long time, and now they are eager to do so.

Think about whether there are other hospice agencies in your area. If off for a little while, you can always reapply, too. Not much to lose.

Jeff86

Thanks for your update, Vitruvius. My DW was just accepted into hospice or precisely the progression you outlined for your DW. This particular hospice uni was acquired not so long ago by a major nonprofit health system in this area, and I think DW’s admission to hospice was aided by having been in a hospital in the same health system. Her PCP is also part of the same health care group.

I suspect that my DW may stabilize at this level, which in turn would mean that my DW may ‘graduate’ from hospice. That has happened to the DH of a woman in my in-real-life caregiver support group.

My DW is still at home, but I am very much where you are, otherwise. I post here with somewhat less frequency because of the heartbreak I feel as I relate to everyone’s story, reinforcing my own sadness. AD is so relentless. I am sorry this is so hard for you, as it is for all of us.

Ed1937

Vitruvius, I'm sorry to hear the news. Is it possible that another hospice would admit her? And since she is in MC, is that even an option? This is the first I've heard about medicare changing the requirements for hospice. I'm not sure when they decided to forego the six month life expectancy for dementia patients, but I'm pretty sure it was some time before the covid scare.

I'm glad to hear that your skin condition is in remission. I know that was something really hard for you, and if I remember right, you blamed it on caregiver stress. That kind of stress is something we all need to be aware of. Wishing you the best.

Pinkscarf

Vitruvius, As I read this I cannot help but think about how we all start this journey and we are learning as we go along, constantly. Just when we think we are on a path and we can handle that path, something else changes. Then we have to readjust and are expected to pivot easily when all we want to do is cry and grieve. I also understand why you don't post on this community too much; I do not, either, for the same reasons. My DH was diagnosed in 2019. Best to you.