Abusive Father in ALF is refusing hospice and I'm at the end of my rope
My (undiagnosed) psychopathic father turns 88 in a couple of weeks and his health has been rapidly deteriorating. I'm his POA, and have been increasingly involved in his health care and life decisions for the past two years due to his failing cognitive and physical abilities. My mom died ten years ago and my disabled sister has lived in a nursing home since then. She has gone no contact with him for her own health and sanity, so I am his only family.
He lived alone pretty well for eight years, but was always trying to force me to move "home" to be his live in caregiver. This was not because he admitted he needed help, but because he insisted I was a complete failure and needed his support. I was actually doing fine for myself, and had had a successful career and life in a far away state for twenty years, but he and my mom (also mentally ill) had always lied about me to everyone who would listen. After many violent and frightening experiences while helping out with my mom when she was in hospice in their home, and also during his bereavement and restructuring period, I knew he would systematically destroy me if I moved in with him, so I resisted. He called up to thirty times a day, though, and it took a toll on a few jobs, relationships, and my health and happiness.
A year an a half ago, I discovered that despite the hours I spent every day on the phone with him, he was hiding severe mobility and safety issues from me and was self-neglecting. He fired all the home health staff every time they were set up by his doctors, saying they were stealing, lying, or hadn't shown up. I had just lost yet another job due to his constant harassment at work, so I took the opportunity to step in and move him to a ALF near my home. It was a horrendous experience, and he even punched me in the face and broke a plate loose in my jaw. After getting him here, I had high hopes that the ALF would care for him so I could get on with my life and get a new job, but that has not happened.
Dad requires an attendant to accompany him to multiple healthcare appointments per week, and the ALF does not provide that or transportation. No one will let him sign anything on his own anymore because they don't feel he can understand what's going on, so I'm responsible for coordinating and attending everything he does beyond the normal daily care the ALF staff provides. He can't even check himself in to a doctor appointment and let me meet him there, as he has no idea where he is or why he's there when the ADA van drops him off.
When I ask for help, everyone always says this is the family's responsibility. I get a lot of guilt for even asking. There doesn't seem to be a way to pay someone or appoint someone to share the burden without revoking his POA and insisting the state take over, which I'm not sure they'd do even if I swallowed my guilt and tears and went that route. He is not considered nursing home ready, yet there is so much they can't do for him at the ALF which requires me taking him out or meeting with outside staff at his apartment.
Now that his bone marrow disease has progressed to the final stage, he has to have transfusions every two weeks, and that will be every week and more soon.
Although it sounds awful, I was both saddened and relieved to hear he was being considered for palliative care and hospice due to the increasing ineffectiveness and dangers of these frequent transfusions. Hospital and medical staff have recently begun seriously discouraging me each time I have to approve another transfusion because they feel the risk of sudden death far outweighs the temporary benefits.
Dad was referred to hospice a couple of weeks ago, but as I mentioned, he has not been admitted past palliative care just yet. There is now a nurse case manager from home health/hospice checking in on him, but l have more appointments and arrangements to make than ever and that will only increase as he gets more ill. I will be expected to sit by his bedside every day and participate in intensive care for him until the bitter end.
On Thanksgiving, Dad finally talked with me in private about hospice. He's been very unresponsive with professionals and remembers little of their meetings. He declared adamantly that he will never do hospice. He says he will not choose when to die or how to do it, that's for cowards. Dying at home (ALF) is 1800's style. He plans to die in the ICU with an IV dripping blood into his arm and says doctors must keep him alive no matter what. He denies even being sick, and says I'm a liar for saying doctors have told us he has limited time. He was very mean and mocked me when I told him I've been sad about all of this.
No one sees the way he abuses me, as he also has a very charming and manipulative side. They chalk his behavior up to dementia, and think he's a sweet old grump. I love him, but I'm bankrupt, facing homelessness, and severely depressed. I feel I may die before he does. I'm torn.