Abusive Father in ALF is refusing hospice and I'm at the end of my rope

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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.


keyush, your story made me sad. Many people cannot imagine the hardship of caring for an abusive parent. I know that you are not exaggerating. With his mind set against hospice, you may just have to take it a day at a time and decide how much you can do. He will press you to do more, so you will have to set limits and stick with them. Your father has options, but if he is fighting against them, there is little you can do to make him accept any of the options.

I am surprised that the facility is allowing him to stay, since he is so ill. I a nursing facility he may be able to get treatments in the facility itself.

It may be that soon the illness will make him change his way of thinking. I don't know which bone marrow disease it is, but I know they can make a person feel very weak and sick as they become worse. There is a limit of how many transfusions the hospitals will do. I know you feel like you are waiting in a stress-packed situation with a difficult and demented personality. You can't let him make your decisions for you or you will be very unhappy. I know that firsthand from my own experiences in caregiving. Decide how much you're willing to do and let him know what the options are. Then try to rebuild your own life so you're not bankrupt and depressed. You are important and deserve to have a happy life of your own.

And don't listen to the bs that he says about you being a failure. Abusive parents will do that to try to put you lower than them. It is purely a manipulation. I can't explain why some parents do that to their children, but they do. Guess it is the ultimate in narcissism -- make others feel small and themselves big??
Boundaries - get some.
I speak from experience. If you don't setup some boundaries and be your own person, nothing will get better for you.
There is no need to give up life for a bedside vigil for someone who didn't respect you as your own person, even if it is your father. You may have a long haul ahead of you. People in hospice don't just kick the bucket immediately.

Dad will never change. He is who he is, and with personalities like that, the more scared they become, the louder, meaner, and abusive they get.
He doesn't get to pick how he dies. My mother was convinced she was near death's door for most of my 44 years on this earth. She was a cast iron battle axe. Only this past year did she decline enough to be on hospice.

She has bi-polar, cluster b personality disorders, and dementia. She was a real handful before dementia.

Even though mom is on hospice, she isn't dying like people do on TV. This is not a sprint to the finish. I liken it to rusting from the inside out. It's happening, but you really can't see it, but you know things are broken. She's not going to get well, so the hospice team makes her comfortable. If something happens she will not be taken to the ER without hospice nurse approval. If she starts to fail, she has a Do Not Resuscitate order and there will be no heroic actions.

If dad intends to hang on to the last breath, make sure it's his, not yours. You only get this one life to live, and if you spend it waiting for the right time to start, you will completely miss it entirely.

If you hold his power of attorney, you have the ability to make decisions for his care. It wouldn't hurt to have a geriatric psych get involved ASAP.
It sounds like your dad probably needs a guardian. What you may have to do is see an elder care attorney over this and explore your options. It sounds like your dad is also in denial about his condition, this is why it sounds to me like you definitely need some help in dealing with what you described here. One wise move to make is to take a break from him if he's abusing you, and if you find yourself feeling much better right away, you may actually want to just avoid him altogether. You really don't have to stay in the company of anyone who abuses you. You can choose to walk away and even refuse to go visit him. I had an elderly friend who tried to get me to move in with him. I knew it just didn't feel right so I didn't do it. I think what he really wanted was someone to wait on him hand and foot, which is what I started noticing. He didn't cease to abuse and other ways, and I was very glad to see him finally put into a nursing home by the right people. I think others know what kind of person he was, but I don't know if they knew what he was doing to me in secret. I was just glad to see him finally go where he belongs. Put in your situation, you really don't have to cater to your dad. It sounds to me like he's tearing you down. Remember that you're an adult and you don't have to tolerate it. You must also remember that he's also an adult, and he can make his own choices only if he's of sound mind. Since he has Alzheimer's, he doesn't seem to be in his right mind anymore. That's why it sounds to me like it's time to take guardianship or surrender him to the state. Sometimes surrendering someone to the state is necessary when you yourself cannot perform caregiving duties. When my parents required care, I was not required to provide that care because my parents lost their parental rights when I became a ward of the state after being rescued from them at age 13. I was never in a position to be able to provide care for them anyway since my skills and resources are very limited. Sometimes you just have to step back and let whatever happens happen, though it's beyond your control. We just can't control everything, and sometimes there just comes a time to sit back and watch.
If I were in your shoes, I would find out the mechanism for resigning my POA in the proper way and ask the ALF social worker to explain how to get the process of State Guardianship started. You don't deserve this grief.
After reviewing your description again, I recognized something familiar about what you described. I had an elderly friend who also fired his healthcare aides and he accused at least one of them of stealing. At first I believe him until something didn't add up. I'm sorry that it took him falsely accusing me before it clicked. Yes, what you're describing in that manner sounds very familiar. It was highly suspected and very probable that he was getting early onset of dementia. Another thing about your post but sounds very familiar is that my friend would say that the aid didn't show up. He would throw a fit even if they were five minutes late. This would be another thing that got them fired, because he would call and complain. The end home health agency finally recognized what kind of person my friend really was because he was very demanding. I think what really happened is many of these in the home health aides really didn't want to come help him because of what he was doing to them. Therefore, I really don't blame them for not showing up or for being late. That's for the physical violence, that would be the last straw for me, because I would never return. I'm saying this as an abuse survivor of many years because I barely survived childhood. Therefore, never again would definitely mean never again if I were in your shoes and someone broke my jaw like you said. All someone has to do is raise a hand to me and I'm out the door right then and there, no questions asked. As for someone calling you 30 sometimes a day, you don't have to answer the phone. You can get caller ID on your landline and your provider block the abuser's number. If he's calling your cell phone, you can see if your cell phone allows you to block that number. If it's not available in the software, definitely call your provider and have them block that number. You should not be in contact with someone who's abusing you. You may not know this, but the longer you stay in contact with that abuser the worst thing abuse will get until the injury is far more serious or you die. I'm only telling you from experience because I've been there and barely lived to tell.
You may want to get him into an Adult Behavioral Unit (geriatric psych ward) for evaluation and medical tx. Many Drs will attribute these behaviors to ALZ and not focus o. The fact that some of these behaviors have been there all of his life.
Again, too much to read, hurts my eyes. I don't see why he isn't in longterm nursing. He needs 24/7 care that AL does not provide. Hospice can come in the facility and work with the facility nurses. You will not have to be there constantly. Your excuse is your job and can't afford to lose it. Do this for u.
The medical staff has suggested your way out is to stop signing for treatment , due to risk vs benefit. So stop signing, stop transporting, stop artificially extending, because the quality of life just is not there for him. Palliative care means no more aggressive poking and transfusing. Do that. Use the ALF visiting doctors and you don't have to take him to appointments any more.
Palliative care means just that-no more efforts because the quality of life is not going to return, to say the least. Thanks, pamstegma for explaining that.
Get an elder care attorney, relinquish all rights and responsibilities towards this person. You are definitely not seeing this as an unworkable situation. You are looking for answers that don't exist. You are a classic enabler. Think : there is NOTHING you can do to make this right. How much time for a quality life do you have? Do you want some peace and quiet and an opportunity to have some normalcy day to day? If so shut the door and keep on walking. Good luck and stay strong.

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