Has been a while since my last post and my father has deteriorated significantly since then, but I wanted to let you know what happened with hospice. He was placed on hospice by his doctor 6 months ago. He was at that time still able to move a bit, still eating and drinking, just very weak about everything. He has severe dementia. Hospice sent a nurse once a week to check vitals, talk with us, sent supplies and meds, etc. He did not show enough signs of deteriorating so hospice called and said they are dropping him. Then the nurse did not show up for her last visit, she quit without notice and no replacement was sent so he went a week without a visit. It happened to be the week he took a huge downturn in health and completely stopped eating and drinking. He mentally gave up. I tried to explain this huge downturn over the phone and the response was "he didn't really qualify when he was placed on it, and the decision has been made anyway." Rude and cold. They then sent a different nurse to examine him who only took his vitals and brought papers to discharge. Would not listen to any description of how he's deteriorated. Talking to a brick wall. No hospice for the last 2 weeks and he has deteriorated even more, fully bedridden, no food, no liquids, sleeps most of the day. High agitation after 330 pm where he aggressively tries to exit bed and we have to restrain him as his body will not support any of his weight. He has now gotten a second referral to hospice after we saw physician. We decided to go with a different hospice as we had such a terrible experience with the first one. They came and diagnosed him with Adult Failure to Thrive due to bedridden and refusing food and water. They said they will accept him. Now starting the whole thing over again. First hospice would not listen, and must have had staffing issues because the nurse just up and quit with no notice, skipping his last week visit altogether. Then someone told my sister "they just got audited", which to her explains everything. Hoping this other hospice will be a better experience. Dad is 95, severe dementia, warm, clean and as comfortable as he can be, at home.
Any other BAD hospice experiences?
When I contacted hospice to evaluate my mom, 92 w dementia and chronic kidney disease, I was told dementia alone qualified her for hospice. While evaluating my mom, the nurse said my dad would qualify also. He only had dementia (never diagnosed w a specific type) and was on atorvastatin. Those were his only two health concerns. My dad ended up passing away from dementia complications after four months of being on hospice. So the nurse evaluating him saw symptoms we didn't even recognize. My mom will be reevaluated at the end of this month, six months after starting.
However, to address your question, I had to ask for another hospice case manager for my parents. She would visit my parents' home twice a week and as the weeks went by she showed increasingly inconsistent behavior, meds weren't delivered, she wouldn't contact me after her visits, she accused the caregivers of lying and messing with the meds, etc. Rude and cold, just like you describe.
I happened to reach the after hours hospice nurse on occasion, and he was wonderful. Like night and day. He wasn't able to become the new case manager, so I called the head office and said the nurse was inconsistent and we would like a new nurse going forward. She complied right away, but had she not, we would have switched hospice companies.
I hope your dad continues to be comfortable, and please know you did the right thing by switching hospices. Please take care of yourself, too!