Hospice experiences?
January 12, 2004 9:04 PM   Subscribe

Anyone have experience with hospice, in particular when there is no primary care giver available on a regular basis?
posted by noether to Health & Fitness (8 answers total)
I had a positive experience with a hospice when my grandfather died a little while back. On the other hand, my mother was there as a primary caregiver and my sister and I rotated through, so this isn't very close to being an answer to your question.
posted by hattifattener at 1:23 AM on January 13, 2004

Well, depends on what you mean by "primary care giver". A good friend of mine spent all of last summer in hospice until she passed away in August. She had 3 "layers" of care. First of all there were all of her friends, about a dozen or so of us, that took shifts staying with her, such that there was always a friend with her 24-7. We would chat with her, get things for her, manage her fluids, and help her with her meds. Then, there was an aid that lived in her house and would do things like make her meals, help her bathe and use the bathroom, clean up vomit, etc... , but the aid could not be awakened at night. Lastly, there was a nurse that we could page at any time to either answer questions about her fluids and meds, or request that he come over if something particularly bad was happening. Overall, the whole arrangement worked well, and I guess there was no "primary care giver available on a regular basis."

What she had as the benefit of many close and devoted friends, most of whom were writers and so were able to come in during what would be "business hours", as well as late at night.
posted by badstone at 10:37 AM on January 13, 2004

My girlfriend is a hospice nurse - if you have any specific questions i'd be happy to see if she has any answers for you ...
posted by specialk420 at 11:25 AM on January 13, 2004

Response by poster: Thanks for the comments. My father lives alone and we think we would like to get hospice care for him. A close friend can stay with him for three weeks and I can take the week after that. My brothers and I aren't really in jobs where we could take a family leave and only one brother lives in the same area. I guess I'm just trying to figure out if this will work if we end up having to hire 24hr care or go inpatient part way through.
posted by noether at 11:58 AM on January 13, 2004

Aren't there freestanding hospices somewhere where he could be attended 24/7? Seems I have heard of such somewhere. But I am not sure how prevalent this sort of facility is. Or what costs would be incurred.
posted by konolia at 12:20 PM on January 13, 2004

Also, although Hospice is great and might provide more social interaction than he's getting now, I would also strongly suggest you look into in-home care, especially if he has any strong opinions about not leaving his home. During my Grandfather's final illness, we looked into both options, but quickly found that he became far more ill and disoriented when he was at the hospice than he was at home. The familiar surroundings served as a tonic for him, and it was frankly far less stressful for him to have strangers in his home than it was for him to be in a strange place surrounded primarily by strangers. I can't stress enough how much gratitude I have for those home healthcare workers (uniformly excellent, every one) who helped us through those last six weeks. Also, we were able to tap into more healthcare benefits (state and federal) for home health care than we were with hospice, although that was a tangential consideration.

My thoughts go out to you at this stressful time. Remember always this - dying is as natural and normal as living, and grief is as normal as joy.
posted by anastasiav at 1:24 PM on January 13, 2004

does he have health insurance? my girlfriend works with an hmo/hospital -- and visits her patients 1-3 times weekly to check on their medical condition and work with the family on medical issues ... she also has a social worker who works with the family/patient on non-medical issues.
posted by specialk420 at 7:17 PM on January 13, 2004

Response by poster: He has insurance, although I'm not sure what kind. He's also eligible for medicare. The medicare hospice benefit is quite good, but it doesn't cover 24 hour care. Most hospice care takes place in the home. The inpatient facilities are just for crisis periods or to give a break (up to 5 days) for the primary care giver. I guess what we will probably do is get 24 hour care in his home after a month. I just wish we could have family there the whole time.
posted by noether at 9:24 PM on January 13, 2004

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