How do you know when it's time for hospice?

Jazzma · April 8

Several people here have shared their experiences with hospice. I'm not familiar with it at all, so any advice/explanation would help. My DH is showing more physical signs of decline: losing weight even though he still eats well (160 lbs from 196), is starting to stumble, and becoming incontinent. I know some of that is just the progression of AD (he's about stage 6). He sleeps about 16 hours a day.

What changes trigger hospice? Is it based on the doctor's expectation of how long he will live? Who did you contact when it became a consideration?

Thank you all for your support and advice. I never expected to get so much from people I've never even met.

jfkoc · April 8

Hospice is an in-home service for the person you care for as well as you. I would get one on board as soon as possible.

Call a few and interview them. While they must all meet certain requirements they do differ because the people who run them differ. They will be the one to decide if they want to take you on.

Lots of info about them online.

Kat63 · April 8

My DH has been on hospice for about 9 months now. He was definitely stage 6 when we started and is now late 6, early 7. I contacted the hospice agency myself. They came and did an in-home interview and said yes my DH did qualify and then they contacted our physician for his certification stating my DH could pass in the next 6 months, which is a requirement. They have aides, nurses, social workers and clergy services. They have been very helpful to me and my DH. The aide helps with showering, a couple times a week and the nurse comes once a week. They are both wonderful. Definitely call and get an evaluation.

terei · April 9

There is no downside to having him assessed by hospice. Call one from a recommendation for someone else if possible + try more than one if you are not comfortable with the first one. If he is eligible to be in hospice, you will get support, for you and your LO + supplies. Meds and equipment you may need, generally fully paid for by Medicare. Call tomorrow! You wont be sorry!

Quilting brings calm · April 9

He most likely qualifies. It’s not about life expectancy when the person has dementia. It’s about decline, weight and how much help the person needs with the ADLs. Mom didn’t qualify the first time- but they put her on the reevaluation list for two months later. She qualified then - incontinence, needing help to shower, dress and she was on oxygen. They brought a hospital bed, changed her oxygen supplier to hospice, supplied her depends and wipes, took over her medications. All paid by Medicare. The nurse came to the AL twice a week, eventually every day. They had a Chsplain and a social worker. They monitored her pain levels and her anxiety levels. I wouldn’t have made it through the final weeks without them.

elainechem · April 9

I didn't think that my hubby would qualify because he could still walk long distances, dress himself with supervision, feed himself, and he was fully continent. I took him to the bathroom every 2-3 hours. I thought he was still in the middle of stage 6. And then, he had two doctors appointments within a 4 day period. Both times, I was asked if he was on hospice. The next day, I called a hospice company. They immediately sent a nurse out and she told me that he didn't qualify, but he would soon. The following day, I called our PCP. He sent a referral to a different hospice. Again, a nurse came out that same day. This time, she told me that he did qualify based upon him being in stage 7a. It was his poor language use that made the difference. I didn't even realize that someone could skip the incontinence part of stage 6 and go into stage 7 like that. Everyone is different, I suppose. They brought out a hospital bed and tons of supplies that same evening.

I thought that it was great that I no longer had to bring him to any more doctors appointments. A nurse came out every week to assess him. Also, his prescriptions were all delivered. I didn't have to go and get them. There were a couple of little hiccups over the prescriptions at first, but it was easily solved.

He had to be recertified every three months, but that wasn't a problem. It wasn't like he was going to be cured of Alzheimer's.

Some people say that the death with 6 months rule doesn't apply in dementia cases, but it still does. The doctor has to affirm that the patient will likely die within 6 months. No one knows, of course. Some people with dementia stay on hospice for years before they pass. The hospice company just has to have the paperwork done every three months.

Nobody expected my hubby to actually die within that 6 six month period, but he did. They were just starting to talk about recertifying him for another 3 months when he unexpectedly had a massive seizure and died 8 days later

harshedbuzz · April 9

@Jazzma

That weight loss is considerable— especially if he's eating well and burning fewer calories because of less physical activity. He'd likely qualify under failure to thrive.

HB