Here are a few thoughts about hospice, as I help my mother care for my dying father. Perhaps my experience will give some pointers to others. My father has long had Parkinsons and Parkinsons dementia, called Lewybodys. Not as radical as Alzheimers, since the patient has periods of lucidity, especially in the morning. A few weeks ago he fell, spent four days in the hospital, then was shunted to a nursing home for rehab. He did all right in the hospital, then became combative in the nursing home, then began to decline fast. Care was very difficult, insurance cut him off one day before we were so notified, and during a conference call with the doctor, we elected to put him in at-home hospice. I flew up to take over as the point man.At-home hospice got off to a slow start, because the assigned nurse was sick. Apparently, she was the only one with the full records; the initial assessing nurse had to go on the nursing home records, which were not very compatible with hospice info needs, and family reports. She prescribed a pain patch, anti-agitation stuff, and atropine, to slow secretions. There was an eyedropper administrated morphine solution, but she shied away from it because Dad wasn't swollowing very well and the directions called for mixing the stuff with soft food like applesauce.Every time we had to move him, there was crying out and combativeness, making it a two-person chore until I got my motions figured out with the help of a nurse's aid. There was plenty of distressed coughing, such as I remember from my having pneumonia. This was distressing both for care givers and undoubtedly, the patient, who was moving in and out of consciousness. Also, the breathing started getting gurgly, causing still more distress for everyone. It felt to me like he was trying to climb out of himself, his discomfort was so great.Finally, on the third day, the main nurse came by. She took a look at the hospital record, and went ashen. It turns out that he has a lumbar fracture and compression, which no one had been aware of. Immediately, she put him on the eyedropper morphine, under the tongue, and hang the mixing with food stuff. She also ordered oxygen and increased the atropine, then gave orders to keep movement to an absolute minimum. Consequently, we got a day of peaceful breathing and apparent comfort.Last night, a harpest from hospice came for music therapy. I chimed in on violin as we gravitated between slow impro with no set melody and improvising on known tunes such as Amazing Grace. Mom loved it, thought my father was probably too far gone to react. Lessons learned:*Drive to the hospital and get a release of everything, and read for yourself. The fracture explained everything and would have saved Dad weeks of agony. Don't assume the nursing home or hospice has access to hospital information, or that it will be read. Doctors get jerked around, no one talks to each other, and you, dear caregiver, are the last line of defense, perhaps the only such line.*Immediately upon admission to hospice, talk to the social worker to get names of private home health assistants (HHA's). An agency will charge $120 for assessment plus $21-24 an hour for watching over an ill person. None of this is covered by standard medigap plans. Private HHA's charge $13-15 an hour. BTW, this is the only significant expense in hospice. Practically everything else is covered by medicare, and hospice workers go out of their way to stretch the rules to your benefit, if they see the need.*That social worker is a gold mine of practical information, and ours has excellent interpersonal skills as well. She can save you tons of money, as well as put you in control.*Ask about everyone on the hospice team, volunteers, interns, and regular staff. Know what days they are available.*Above all, assume any verbalizing in a semi-comatose person as pain, not fear of falling or whatever, and report that to the hospice nurse. Be an activist about pain. If it looks like distress, it probably is.
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