What does Hospice look like?

Battlebuddy

  Ok folks , 

   we have been on hospice a week now and I guess I had a little fantasy of what it would be like . It would be like the  cavalry coming over the hill in the old western. My problems would be over and Peace would come to the valley. 

   We qualified for Hospice because DH spent four days in bed without moving his upper body much. He wasn’t eating or drinking his usually amount. Since then he got up to wheelchair, then started walking and pacing again. One day he was back in bed, yesterday he was up all day. Today he is still in bed and wants to be left alone. 

   When people we know heard Hospice everyone  in denial came out of the woodwork. They all wanted to see him . A cousin called who he hasn’t seen in years wanted to come by. Old frat buddies wanted to catch him before he passes on. What they didn’t expect was my DH greeting them at the door , not knowing them and telling them to get out. The hospice chaplin who knew his mom but didn’t know she had died talked to him about what a great lady she IS. Of course DH told him she was dead and started crying and told him to get out . He called back asking me if I had made furneral arrangements . I think the bath aides aren’t coming because he is too aggressive. 

    It’s been crazy. Is this what Hospice is like? Is it up and down, or more of a bed bound experience?  I’d be curious what others experiences have been. 

    

dayn2nite2

Your case is highly unusual.  If he continues with the walking and pacing and aggression, I think you should prepare yourself that he is not going to qualify at the 6-month recertification.

IMO for you he's on hospice only because of his condition at the time they evaluated him.  He will be on for 6 months because Medicare will pay that long.  If something significant hasn't occurred that makes him bedbound or possibly wheelchair-bound by then, they will de-certify.

And I agree, if he is aggressive AND mobile you won't be seeing any bath aides.

Mostly for me, hospice was better equipment, my mother's cognition was such that the chaplain singing to her was sufficient, there was a massage therapist that would give her a massage in her wheelchair.  But she was in a facility (on Medicaid for the bed and board part), quite passive, and there was extra help for times hospice wasn't there.  I think hospice at home is quite different.

This is kind of a trial run, I guess, for you.  If you aren't liking this hospice, I would let them run out the 6 months, see how he is, if he is re-certified for hospice I would have him evaluated by a different hospice.  If he's not re-certified, then you will know not to contact this hospice when he gets evaluated again.

aod326

While not such extreme ups and downs, DH certainly stayed on the rollercoaster while on hospice, right up until his crazy final week. He had been in MC and I decided to bring him home, with a live in carer, because the difficult behaviors he'd had that led us to place him were no longer there. The couple of days before he was due to be assessed by hospice, I thought they'd never accept him because, seeing him on my daily window visits (COVID), he was suddenly chattering (nonsensically, but nevertheless verbal) and had stood up out of his wheelchair, was drinking from a cup without help. 

His was a general downward decline, but there were days when I was exasperated because he had sudden improvements where he'd stand up in front of his wheelchair, or start singing to his favorite music. He'd go from not eating much, to us actually having to cut back on his food because he was putting on weight. Three weeks before he died, he had what I now know was his final surge - got out of bed, joking, eating, for a couple of days. It sounds awful, but that drove me crazy! Out of earshot, I'd say to him "make your mind up - are you coming or going?". I've experienced people close to death having a surge where they suddenly seem to be recovering, and knew to expect it, but nevertheless found myself wondering if maybe whatever had caused his dementia had actually gone away.

I don't think there's a standard progress that you can expect. I'd say go with the flow, even though I know how extremely difficult I found that! Our hospice nurse was great, and wasn't surprised at the ups and downs - she said wait out the first six months qualifying period, then see how things are. (He lasted 10 weeks.) Our hospice (which was amazing) only provided an aide once a week, so is that maybe why the bath aide hasn't visited? Actually the only negative experience we had with hospice was the aide - I found him extremely patronizing to my DH, saying things like "I know you could help me if you wanted to, you just don't want to", so I told hospice we didn't need him.

I'm totally with you about people coming out of the woodwork. I really had to bite my tongue not to say to people how much better it would have been for him if they'd come when he could actually remember them and communicate with them. It was as if they felt they had to come and see him before he died so that they'd feel better about themselves. 

Unfortunately, the only suggestion I can give is to do your best to hang in there. Utilize any support systems the hospice may offer, if they help you. I preferred the support/listening the social worker offered, rather than the chaplain.

Good luck.

Battlebuddy

   Thanks for your responses! 

   I too think that hospice will give us the boot at some point. He walk, talks, and eats now. 

  He was in bad shape when hospice came on board but has clawed his way back. He was falling through the cracks medically and I was trying so hard to get him help. Hospice gave him lots of attention. They put him on Serequel and took him off his Alzheimers meds. Nurse  is helping with constipation. They decreased  his anti depressant. I have the number for lift assist. The bed is amazing. I finally got the DNR I had been working on. 

   So if they drop us , I will always be so grateful for what they have given me  and accomplished this week. 

Ed1937

Battlebuddy, I'm glad they were able to help in whatever way they could. No doubt you needed it.