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I've posted a few questions regarding the situation with my father, but here we are again with another major health issue and another instance where he will demand to go home even though he is unable.


A little backstory, my 70 year old father has a slew of health issues that make it basically impossible to live alone. He is legally blind, and after a stroke last year cannot walk without the assistance of a walker. After the stroke, my boyfriend and I moved in with him for a half a year to help get him back on his feet, and he left rehab against medical advice. Since, he has fallen many times but stayed relatively stable. He has a home health aide that helps during the day and provides meals, and has basically refused any other assistance. He has since been diagnosed with lung cancer and put on hospice, but that actually turned out to be worse for him. He was over medicated and developed pneumonia that hospice did not catch despite multiple pleas from I and his health aide that something was wrong. He fell and broke his arm last week.


He has agreed to two weeks in rehab to give his arm to heal. With a walker, he obviously needs two worker arms to get around. However he insists two weeks is it and is already being combative about refusing to stay longer than that no matter what happens. Worse yet, he's admitted to me that he is having hallucinations but will not tell the doctors for fear of his decision making taken away from him. I've informed the case worker and am prepared for the incoming attack about that fact.


Honestly, when is enough enough? I can't move back in with him, all the doctors keep deeming him mentally competent....I'm just done. I suffered through this same battle last year and spent the following months resentful, angry, and depressed. I don't know this scared and angry man anymore. He wants to go home and die, but doesn't care at all about what that is doing to myself and his care worker. There is no way in good conscious I could drive him home or let him have his dog back.


Do I cut contact? Let him scream and blame me for everything until he can't anymore? What have other people in this position done?

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I agree with barb. Your dad is/was on hospice for lung cancer. Do you think at this stage in life he should fight the cancer? Look I am not trying to be mean, but your father had a stroke, is blind to some degree, can't walk very good and by what you entail has other health problems...and your thinking is what? This isn't about your dad...it's about you!! Your dad has no quality of life. At least on hospice he gets meds to put him in a sleep state where he is not in pain or discomfort...where he doesn't have to deal with his reality. I know it's hard and it sucks, but I really think he is ready to go...so let him!

I am truly sorry!

Hugs!!
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ikgbrd Mar 2020
This is the second response I've got like this, so I must not have made myself clear in this regard. His lung cancer is very new and amounts to two tiny nodules in his lung. He is not in end stage lung cancer, but it will progress and likely be what kills him. He wants to go home and die now because he doesn't like where he is at, but as recently as a week ago he was adamant he didn't want to pass any sooner than he had to. The hospice was originally prescribed as palliative care with no prognosis that would lengthen his life rather than fighting it with chemo. If this was about letting him die comfortable, I would. This is about letting him live dangerously for who knows how long.
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The fact that you’re asking, “when is enough enough,” tells me you are there. Perhaps you can use his two weeks in rehab as an opportunity to step away, evaluate the situation, and decide how you want to move forward. It’s devastating but you’ll find many members on the forum who have decided to cut contact. Sometimes it’s the only answer. Many others, myself included, have continued caregiving while trying to develop some healthy boundaries. The words make it sound easy but it’s not. It’s a constant battle. Some days I’m doing well with it but it feels more like a one step forward, three steps back kind of a situation. There are a few things that have helped me: 1. recognizing my father and family members for who they are. My father is broken, dysfunctional, demanding and selfish. Nearing death only exacerbates those qualities for him. 2. forgiveness. Most of my life, I didn’t understand the concept but I find now that forgiveness is about me. It’s letting go of the anger and resentment attached to the situation and his behaviors. 3. deciding that I am not a victim of the situation, that I am here by choice and I give myself permission to change course if I need to. Like your dad, my father is still considered mentally competent. I try to make sure he has all the information necessary to make informed decisions, but have also had to learn to let him deal with the consequences of those decisions. That has meant letting go of some control and emotionally detaching in many cases. It’s one of my new superpowers. This is difficult stuff and your dad is making it more difficult. He needs to make decisions about what he wants regarding hospice care, etc. If the current hospice care is unsatisfactory, he can request a different team or opt for another hospice provider altogether. You also should decide to what extent you will continue to participate in his care. Make those boundaries clear. He may very well scream and blame you for everything. Remember, this is no longer a normal father/daughter relationship. You are now the adult in the room which places you directly in the line of fire. Keep your boundaries up and carry an emotional shield. I am always a little envious of people that have wonderful end of life experiences with a family member. That has definitely not been my experience and may not be yours. But what I do find is that there are small reaffirming moments and gestures that help me through. I’m hoping you and your dad are able to find the same.
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Hospice doesnt "speed things up". I hope you and dad realize that.

YOU need to figure out what YOU can do. Like visit once a week. The fact that your dad is I'll does not make it possible for him to consider you his slave.

If he wants to be at home with a hired caretaker, so be it. Set some healthy boundaries and give of your time as you see fit. Not as he demands.
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He is on Hospice? Why on earth are you treating pneumonia?

I'm dead serious about that. He wants to go. Let him.
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ikgbrd Mar 2020
He has chosen to treat the pneumonia, not me. Overall, the hospice is a long and complicated issue so I did not go in depth. His lung cancer doctor has not given him a prognosis, and prescribed only palliative care not necessarily hospice. But the normal palliative services this doctor used would not accept him so he did hospice instead. My dad wanted the palliative care to lengthen his life comfortably. He is angry now and saying he wants to die, but a week ago he was telling everyone at hospice that he didn't want to do anything to speed the process up. His lung cancer is very new, and though it will likely prove terminal untreated it is not at an advance stage yet.
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I know it is easier said than done, but if you are asking when enough is enough, you clearly have had enough. You need to consider your own health and well-being. Start with a simple acknowledgement to yourself that you have reached the end of your ability to care for him (if that is true.) Then tell him. Then let him know his options, as kindly as possible. Do not move from your decision, once you have made it. Going back and forth in indecision will drive you both crazy. Take some time for yourself, made a decision, then stick with it. Not easy, I know, but it will get easier to stick by your decision once you have made it and announced it.
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"Honestly, when is enough enough?"

I'd say now.

He cannot look after himself. He may want to - but he can't.

His care needs have grown too big for you. You may want to do it all - but it's too big.

Are these the facts? If so, that swipes all the *but I want...* off the table & leaves the real choices. Ask the Social Worker what the real choices are here. (Looks like AL or NH to me).

He will be angry if he can't have what he wants. That's understandable. He got old & sick - no-one wants that. But that's just life. Everybody's life unless unlucky enough to die when young & healthy.

You don't have to cut contact. Just explain it simply. "You need help. I can't do it all. We will ask for help. If you have to move, so be it. I will take care of your dog & visit you".
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ikgbrd Apr 2020
He does have a case worker through the state a social worker through the hospital. The doctors are recommending 24/7 care now, either at home or in a facility. Hospice has dropped him as they cannot provide that care at home, and the agency he has used in the past is looking into 24/7 home care but with the pandemic it is very unlikely it will be approved.

Every single person involved agrees that it is a complete danger for him to be home. He can't cook, clean, even microwave a dinner for himself. He was having trouble walking with a walker due to balance issues, and now with only one arm he has only a cane. However, he is still deemed mentally competant. His case workers are all trying to get him the care he needs, but due to his injury, his own stubbornness, and the pandemic now it looks like he won't even have the services he once did. It looks like now when he can find a ride (which won't be me) he will be going home with nothing.
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Talk to the hospital social worker about what your dad's needs are for Home Care. If dad is competent, then let him set that care up, or if are inclined, help him set it up.

Your father is in need of "case management" services. Call the local Area Agency on Aging to get him signed up for that.

Is it possible that your dad is in need of mental health services, say, for depression? Talk to the SW about that as well.
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ikgbrd Apr 2020
He does have a case worker through the state and until now was receiving care at home for forty hours a week, plus what hospice was providing.

However, the doctors are recommending 24/7 care now, either at home or in a facility. Hospice has dropped him as they cannot provide that care at home, and the agency he has used in the past is looking into 24/7 home care but with the pandemic it is very unlikely it will be approved.

Every single person involved agrees that it is a complete danger for him to be home. He can't cook, clean, even microwave a dinner for himself. He was having trouble walking with a walker due to balance issues, and now with only one arm he has only a can. However, he is still deemed mentally competant. His case workers are all trying to get him the care he needs, but due to his injury, his own stubbornness, and the pandemic now it looks like he won't even have the services he once did.
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How is he being combative about something you don't discuss with him?

You have two weeks in hand. When he starts up with the "I"m not staying in this dump" routine, all you have to say is "we'll see."

When he starts up with proposals that would involve you being on his premises, you look at your watch and have a pressing engagement elsewhere.

Meanwhile: his wish to go home and die may not be unreasonable, and may not be unmanageable. That does not mean that you have to provide the management. Discuss it with his care team as one option.

Lung cancer. Pneumonia. Broken bone. Angry outbursts. Have you had any information about his current condition and his prognosis?
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If you were not there or able to care for him, what would the plan be? Decide on the care he needs in that "without you" situation. Then, inform his doctors, his social workers, his rehab facility... and him that you are unable to care for him at home. Many stroke patients are emotionally "labile," get upset easily and throw temper tantrums. See his reactions as part of his "stroke deficits." He will probably throw a fit, you'll hate seeing him rant and rave, and everybody will survive his tantrum. After the tantrum, explain that he has needs that are beyond your ability to care for him. Allow social work to set up a long term health care solution, probably a combination of home health aides, adult day program, long term facility... for your dad.

Allow your dad to settle in to his new situation with health care workers, adjustments to "home life"... Visit and help in small ways but never in ways that create problems for you or him long term. The goal is to keep dad safe and healthy... and to keep you sane, safe and healthy.
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Thank you everyone for all the advice and support. It turns out the situation resolved itself once I was able to step back and put my foot down that I would bot be the one to care for him at home. His case workers tried to apply for 24 hour care at home but due to the dangers of the situation it was denied, and he finally, begrudgingly accepted that he could not go home with no care. He enters a skilled nursing facility tomorrow. It is honestly bittersweet to know that it's not what he wanted and now a bunch of other hurdles come with the prospect of selling his house, distributing his belonging, etc, but it is also so peaceful to know he is in a as safe a situation as possible.
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