Qualifying for hospice

starwood

This is my first post since I joined this group months ago after DH was diagnosed and I’d really like input from others who have had similar experiences. Over the last 4-5 months he’s had a rapid decline physically. For a month or so, the decline was both cognitive and physical, but he had some improvement cognitively after some medications changes. However, he is now totally dependent in all self-care areas except eating, but needs some assistance with that. He’s developed a very severe lean to the side when in his chair, making transfer to bed/toilet, etc. very difficult He still has fairly good long-term memory, but is beginning to have more issues with knowing where he is. He has become wheelchair dependent, lost 15 pounds in 3 months, and despite medication to stimulate appetite, he is barely maintaining his weight. Neurologist has done diagnostic lumbar puncture for normal pressure hydrocephalus but his symptoms have not changed as one would hope if the diagnosis was positive. So, I’m wondering at what point hospice might come into play. I know every case is different, but am curious if anyone has experienced something similar and been approved for hospice.

sandwichone123

Hi Starwood, the mobility issues, declining condition, and weight loss suggest that a hospice evaluation would be helpful now. If one hospice turns you down you can ask another to evaluate as they often show differences in who they will accept.

jfkoc

Please interview more than one Hospice. They are not all the same.

Kat63

My DH was accepted by Hospice three weeks ago. I have to completely shower him, brush his teeth etc. He uses a walker sometimes and holds onto furniture, walls etc as he walks around in our home. He has started weight loss, as has lost about 20 lbs in the last 6 months. I fix all drinks and food and he can still feed himself but has an occasional problem with swallowing. Occasional incontinence problems.

I too, think Hospice evaluation is warranted for your DH. Good luck.

Quilting brings calm

You saw my post on my mom. She didn’t qualify - but that’s because she hasn’t lost weight, was considered to be doing her ADLs herself ( dressing, showering , eating, toileting, etc ). The more ADLs a person needs assistance at, the more likely they are to qualify.

There's no reason not to have an evaluation.

mrsabaldwin

https://alzconnected.org/discussion/70236/qualifying-for-hospice

I am so thankful that you posted. My mom is in a very similar condition as your DH. I have been wondering about hospice as well. I am going to speak to my mother’s doctor on Tuesday for their opinion. I thought hospice was further down the road but it’s sounding more and more like an evaluation is needed now. Sending you positive thoughts!

starwood

Thanks to everyone for their feedback. He was admitted yesterday to a rehab facility to see if intensive therapy may increase his abilities. Now, I’m in a quandary about whether or not to inquire about hospice. I don’t want to seem as if I’m hurrying things along, but it would certainly make life easier (in terms of equipment, in home support etc.) if he was in hospice. Am I being cold hearted about this whole thing? Of course, I want him to do as much as possible for himself, but my experience so far is that his abilities fluctuate so much that even if he does well short term in rehab, he may not be able to sustain that at home. Any opinions about this new twist and whether or not I should pursue?

Quilting brings calm

I do not know if rehab and hospice are compatible. I was told that hospice would pretty much cease all medical except comfort care and medications. If mom had been accepted, she would still be able to get eyeglasses, get her wet macular degeneration shots, go to the dentist, and the podiatrist. Rehab to me would be treatment beyond that. However that’s just my guess.

So I suggest waiting until rehab is finished. It won’t be that long, they won’t continue it if he is not capable of participating in it.

midge333

@starwood:

I would still request a hospice evaluation. Your DH sounds like he is in the late stages. Honestly, I think that it is very unlike that intensive therapy is going to result in meaningful improvement. I do not think you are rushing things and I do think your DH will qualify for hospice.

harshedbuzz

@starwood

Based on your description of your DH's physical symptoms, unless they're related to some other factor, it sounds as if he might qualify for hospice. I've been told it is possible to have PT for comfort reasons on hospice, I don't think a strength goal would be deemed appropriate. It's worth getting clarification.

That said, most PWD in the later stages are unsuccessful with PT. Often they don't have the stamina for in-patient and/or struggle to understand and follow directions and are discharged fairly quickly.

Dad did a stint of in-patient rehab in the middle stages and did pretty well. A year later he had progressed to the later stages of dementia and had lost ground physically. We brought in an in-home PT but dad was unable to make progress with him and was discharged quickly. The problem was that dad was apathetic and uncooperative with mom trying to get him to do his "homework". YMMV.

HB