When to stop helping?

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When to stop helping?

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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?

Care Decisions Dad Living Independently

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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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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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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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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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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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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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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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Since your Dad doesn't seem to know what he wants, then tell him to call you when he figures things out. And here is a list of places that maybe able to help u.

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Does he understand exactly what the purpose of hospice care is?

I am sorry that you are struggling with this. You must be completely exhausted. Are you dissatisfied with the particular hospice organization that he is using?

My brother was on hospice. He left the first organization. The second one was exactly what he needed and they served his needs very well until his death.

The right organization will keep him physically comfortable, supply a social worker and clergy. It’s wonderful team support for body, mind and spirit.

Why don’t you explore another option if you or he are not happy with his present organization?

If they are doing a satisfactory job I feel your dad could benefit from speaking to the social worker. The social worker can determine if clergy would be helpful for him.

In time he will accept his fate. This is where a social worker would help him tremendously. The social worker that worked with my brother was fantastic. He was comforted by clergy visits as well.

Best wishes to you and your dad.

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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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Sounds like you're enabling him.

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No need to project blame or guilt on an already difficult situation. It’s hard to watch loved ones struggle.

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Your dad needs to have a psychological evaluation by a Geriatric Psychiatrist. He is the only physician qualified to determine if he is mentally competent to make decisions. Other physicians won't touch this subject because of liability issues and afraid of being sued by someone in the family. If he is in a rehab hospital or nursing facility you can request he be evaluated. You mentioned he had a stroke in the past but did not include any deficits from that. Psychiatrist can address this also. If he is deemed incompetent you can seek legal advice on becoming his guardian. This way you are in charge of his care. Falls are the number 1 reason for a patients demise. They usually break a hip. Sometimes this leads to blood clots in the legs that break off and travel to the heart or lungs. Most don't recover from that. Or they get really bad pneumonia from being in the bed because it hurts to much to get up and walk or exercise. Pneumonia still kills our elderly population. Once procedures are in place and he is in a better environment getting the care he needs you will both feel better. He will never let you know that though. All men are stubborn, they don't wont to lose any control and never want to leave their home. These are hard decisions to make but he took care of you and your siblings as children. Now it time to return the favor. Best of luck to you and your family.

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He was just declared competent to make his own decisions, even though he can barely walk, cannot cook, clean, or bathe himself. He has now lost the home health care he used to have because the doctors are saying he needs 24/7 care and in the midst of the pandemic no one can provide it. So now he is demanding to go home with no care, completely unable to do the bare necessities of life, and he is still considered mentally competant.

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Use a hospice facility that has an end of life facility available. This was a Godsend for my brother. His care was very good.

You aren’t able to do the hands on care for him. Do not feel badly about that. It takes a bit of time to do adequate research on hospice organizations but the pay off is worth it.

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It sounds like he's having cognitive issues, but, as long as he's competent to make his own healthcare decisions, I'd step back and let him make them. You can visit him whenever it's possible. Right now, I doubt that any hospital or long term care facility is allowing visitors. At least not in my state. For his own safety, I'd stay away and send him cards and phone calls with warm wishes.

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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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I forgot to put 'hallucinations' on the list; and also I see updates about the lung cancer's being 'very new.' How new, and what imaging and investigations were done?

I still think there is more information to be collated, ikgbrd, is the thing. Is there any one doctor leading his care?

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It sounds as though he needs to be in a nursing home.
There is really nothing you can do for him. I'd rescue his dog though. If he can't take care of himself, He certainly isn't going to be able to care for his doggie. Good luck to you and by the way...DO NOT move back in with him!!

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I suppose it depends if he can live independently without you. I think you need to explain clearly that you can't live with him and he is not fit to look after his dog. That will be the hard bit. You can ease into that by saying IF he manages with help to live alone THEN the dog can go back. Is it feasible for him to live with day carers? If not then he has to be told.

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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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Does the hospital/rehab facility have a social worker or someone, maybe a doctor, who is in charge of his discharge plan?
Find this person and tell them that you can't care for him upon his discharge from rehab, that you cannot provide a safe place that is going to meet his new needs.
Be firm.
Then they are going to have to talk with him directly about what his options are.
If he cannot get up out of bed into a wheelchair and from a wheelchair to the bathroom by himself, he won't be able to go back to his own home, or yours if you say you're unable to care for him there.

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Thanks for your reply. I have been speaking with the discharge planner almost every day now. Right now he has no home health care (his previous services are trying for 24/7 at home care, but it is not likely to be approved, especially with the pandemic), no hospice (they won't work with him unless he has 24/7 care), and is demanding to go home. The discharge planner is aware I will not care for him and he has no way of getting home or taking care of himself. She hasn't been clear about what they will do if I do not pick him up, in fact she gets quiet and kind of rude when I mention it.

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I feel for you!! Not being in their right mind is the worse disease anyone can have! You need to think about your own health and sanity. My mom is in a facility due to Alzheimer’s and Parkinson’s. I visit her every day and spend the day with her there. That way I still take care of her but when it gets overwhelming their staff can step in. Don’t blame yourself. He may blame you but you have to accept that you have done everything in your power and somethings we can not control. I wish you the very best. Just spend as much time with him as you can and keep check on the facility.

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I understand how you feel, you feel as if you dont know what to do and now in your current state of mind you can't think clear. You feel as if the world you knew is spinning out of control and you want things to be balanced again. But here's some advice first you need to clear your state of mind, so you can help your father at full strength. Try yoga or meditation, so when the time comes and your father passes just know you did what you could to help and protect him, and that you gave him the favor of taking great care of him. So no, don't cut the connection of your father and dont let him scream until he can't because later on in life you'll feel guilty for that decision. And what I recommend doing is to do what you think is best for him.1

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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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There is no arguing with someone not in their right mind. Discuss your concerns with his care team.

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I feel your pain! My 89 yr old Mom is legally blind, almost deaf (has tried 2 hearing aids and returned them both), has advanced arthritis and neuropathy and UTI problems, bladder control issues and can barely walk with a Walker. She lives alone and can't cook, shower, clean, change her sheets, etc. She says unloading the dishwasher or doing laundry are "major events" that take her hours and hours to do. She is also lonely and on depression meds. She can afford assisted living, in fact there's a wonderful place ONE BLOCK AWAY that many of her friends have moved to. Still she insists she "wants to die in her own home". She is stubborn as a mule. AND a narcissist. I've been basically doing her bidding since I was 6 years old, and as the oldest daughter am expected to continue. But I finally STOPPED COLD because it came down to me or her. The emotional, mental and physical toll on me dropping everything and running whenever she needed or wanted something was too much. I'm 64 and have health issues myself. My husband just had cancer which is thankfully in remission but he's still in danger of a recurrence and has to have regular endoscopes. He also has COPD and he had triple bypass surgery last year. I live only 2 miles away and made sure Mom has a pendant (after numerous falls) but whether she'll actually press the button? I doubt it since she's already fallen once without doing so, instead she cried on the phone and had me take her to urgent care. She SHOULD have been in the hospital, she cracked a rib and hit her head.
I've HAD it, for HER sake as well as mine. She has the money to move to Asst Living, she has physical therapists coming and going (mostly going) and she's been able to slide by this way because she has most of her brain cells and boy, can she talk a good game. But when the chips are down somehow I wind up being her slave whenever she wants anything. Enough is enough. Plus I KNOW she'd be happier in Asst Living, she is a very social person. I can't understand her stubbornness but I refuse to continue to enable her and drive myself NUTS so I stopped cold. Haven't even spoken to her in 2 weeks, and boy has it been nice. She hasn't called me once because she knows I'll say NO to whatever it is she wants, and she just can't call without a request! How sad is that? Anyway, I think we can get to a point where we truly are ENABLING poor, even dangerous behavior. I'm trying to show Mom she can't go on this way. It's hard, of course, but guess what, she's getting OTHER people to do her bidding. I'm just hoping that eventually even that peters out for her so she goes to where she can be MUCH happier, have meals cooked, laundry done, e.t.c AND friends around.
Hang tough!

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I am clapping for you. Well done! Tough love but necessary.

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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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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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Encourage him to stay longer at rehab. Going home would be tough on you & you would unwittingly become his full time caregiver. Not good for you or Dad, Hugs 🤗

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Take it a day at a time. I understand it is hard to watch and deal with.
Just experiencing my father dying of stage 4 lung cancer in January. He went very quickly after finding out in November.

My mom and I found a great Palliative Care team for my father. Ours was from Compassus. Communication of the process was extremely helpful and supportive.

The hallucinations are probably coming from his medication.

I found support groups for caretakers or connect with grief counselors, who help with all types of transitions.

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ikgbrd, I really do sympathize. Hang in there. Your actions or lack of actions can change this.

"It looks like now when he can find a ride (which won't be me) he will be going home with nothing".

He may choose to go home. That does not entitle him to enslave you.

Have your decision clear in your head. If he gets home & the calls start, you either take this on & start providing all his care again... or stand firm.

If you believe the best care option for him is what the Doctors & Case Worker set out, tell him you agree with them. Make it real simple for him. If you can't look after yourself Dad, call your Case Worker to arrange help.

You may wear the brunt of his anger. If so, there is no reason to accept abuse. Hang up the phone.

As NYDinlaw said, you can lead a horse to water... He has a big bucking bronco horse spirit! Hold your boundaries firm.

He may just have to fail at home to finally accept his situation. Many do.

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Have you found a solution yet? We all have to realize we need to be healthy in order to be part of the solution - healthy emotionally and physically. When I look back at difficult phases of my life - I ask my "Did I do my best?" "Could I have done anything differently?"

I did my best and I could have looked to taking better care of my mental/emotional needs. Stress is an awful thing to deal with day in and day out. You found a great place to let off steam. Hope things are better.

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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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Thank goodness for that!

I should let the dust settle before you start worrying about the remaining admin., and take a well-earned break for yourself too.

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