Dad is 66, survived stage 4 colon cancer including liver resection but unfortunately had a stroke in September due to chemotherapy and afib. He now has moderate to severe vascular dementia, anxiety, and neuropathy from a shingles bout in April that will periodically and rapidly take his pain to a whole
new level. His oncologist referred us to hospice in mid-October, which we started the following week and coinciding with a sudden increase of pain symptoms that he can’t detail because he’s mostly non-verbal.
On the other hand, the stroke has created care needs that are beyond my
and my sister’s ability to assist. He was living independently before the stroke. He is currently in the nursing home that accepted him as a Medicare rehab patient, but is now a full time resident with the hospice care. The hope was that the nursing home could provide “base-level 24 hour care” and hospice could be an additional layer, creating a network of care that would work together to manage Dad’s health needs, pain, and anxiety.
In reality, hospice is fighting the nursing home’s inability to recognize verbal cues (moaning/yelling) as a request for as-requested medications, and we are constantly behind the pain and anxiety. Family will visit and find a man who is obviously in pain and/or anguish. We think the nursing home is simply under-staffed and unable to spend the time required to care for Dad. Hospice agrees and we’re working with that team to maximize scheduled meds and minimize requested meds to ensure we keep in front of the pain/anxiety. I find myself having to be at the nursing home every day, and sometimes multiple times a day, to ensure he’s comfortable and to request meds as necessary on his behalf. I am POA.
Dad is not eating on his own as of 3 days ago. If you ask him if he’s interested in a meal, he typically says no...although he may still show occasional interest in an Almond Joy or a root beer float. While on the phone with my sister earlier today, hospice said that their goal is to reduce Dad’s pain/anxiety to increase the probability that Dad will want to eat, and that the nursing home hasn’t “taken the time” to make sure Dad is eating (to get him to eat, you have to feed him yourself, bite by bite). Sister says this, along with the inability to get in front of the pain/anxiety, is neglect by the NH. I, however, think that Dad is ready to go and I generally disapprove of the NH trying to go above and beyond to try to feed him.
Anybody been in the same situation? I’m thinking a meeting of the minds between the NH nursing mgr and hospice
may be in order to determine a concise care plan (or determine that the NH is unwilling to carry out hospice’s care plan, in
which case I’d expect we’d have to move Dad) and make sure everybody’s on the same page.
Thanks in advance, and thanks to all the people who have been through this and still take the time to help the inexperienced.