Starting with hospice

M5M

at the primary care doctor he suggested it might time to involve palliative care and/or hospice. DH is still ambulatory but needs 100% help and care. Doctor said he would qualify because of weight loss and skin breakdown ( he has pressure sores on his rear). I’m wondering how early others have involved, and what your experience was.

Carl46

My wife with AD entered hospice when she was diagnosed with lymphoma, and it was a great blessing to us. Three months after her death, I still see the chaplain monthly and attend a grief support group run by hospice and a Christian ministry. In your shoes I would involve hospice as soon as they will accept him as a patient.

cdgbdr

I don't have personal experience but have worked in home health and hospice for decades. As soon as the person qualifies, involve hospice to receive the benefits and care available. It is not a death sentence. Hugs to you.

Vitruvius

I agree with the above to involve hospice as soon as they will take him.

At the recommendation of my DW’s MCF we initiated hospice. This was when my DW was no further along than it sounds like your DH is. She had weight loss but no skin issues (remarkably she still has very few). She was only marginally ambulatory because they were afraid of falls of which she had a few. She could still feed herself but was beginning to pocket liquids.

My DW has now been on hospice for over two years now and is very, very near the bitter end, Stage 7f, of this awful disease. The primary benefit has been additional nursing oversight and the hospice doctor who is very familiar with dementia patients. They provide aides with useful expertise in bathing and feeding. They do also provide additional services, like a music therapist, and a social worker, which is nice but not essential to her care.

But of course hospice also means that you agree that your LO will generally not be provided with restorative medical care, just palliative care for medical conditions that could lead to your LO’s passing. This is the only real downside, but only if you’re not ready to forgo “saving” him in case he has a life threatening issue.

BPS

You said that she would qualify partially due to weight loss. Would you mind telling me how much weight loss. My wife is in MC and in the last 6 months has lost 24 pounds (I don't know if that is enough to be a factor). She is down to 111 pounds. She has no appetite or interest in eating, but with help she will eat a little.

Kat63

My DH has been on hospice care at home for a year now. He was accepted on Hospice as he could no longer bath himself and is slowly losing weight (about 2 lbs a month). He can still walk but uses the walls, furniture etc to assist him. He still feeds himself, although I serve him and cut up all his foods into bite size pieces and basically only serve him soft foods. It is so nice to have the hospice aide’s assistance with showers twice a week and a nurse visit each week to check in and request any medication we may need. I have had to call them a few times after hours and they are always great about coming whenever needed. It’s a comfort to me to have them on board.

Vitruvius

BPS, 24 pounds in 6 months is 4 pounds a month. That is definitely within the criteria they used for my DW who as I recall was losing about 2-3 pounds a month at the time. They told me the criteria is actually “failure to thrive”, which seems to allow some judgement by the hospice.

M5M

https://alzconnected.org/discussion/comment/251757#Comment_251757

BPS, DH has lost 16 pounds in 6 months, I think the pressure sores may be the more significant issue here.

harshedbuzz

https://alzconnected.org/discussion/comment/251757#Comment_251757

Dad's MCF suggested a hospice eval when was lost 4lbs a month during his 2 months in their care despite eating well. He lost over 10% of his body weight in the last 6 months of his life which we were told would qualify him as failure to thrive.

He died the night before his evaluation, so I can't be 100% certain. Mom missed out on a lot of support from which she could have benefited.

HB

BPS

I either hadn't heard of failure to thrive related to dementia or I was focused on where we were at the time. I have read a little about it now that two of you have mentioned it and I think that might be the case with her. She has no appetite and mostly just wants to stay in her room and sleeps a lot. Thank you for mentioning that to me.

ronda b

https://alzconnected.org/discussion/comment/251757#Comment_251757

Yes it is . Ask for hospice consult.

BPS

Thank you all for your input. I believe that is what is probably best. She has a doctor appointment next week and I will ask for a referral