My father has end stage liver disease. He lives alone in his own home and I’m his only child, living 2 states away from him.
My father went into the hospital almost 2 months ago with a GI bleed, got pneumonia. Was discharged to a rehab facility because he was too weak to go home. He has not gained his strength back and has gone back & forth between rehab & hospital for paracentesis. He met with the palliative care nurse at the hospital last time and he decided on comfort care. He was discharged back to the rehab nursing home as that’s where there was room for him. While I’ve been told he has months (maybe up to 9) to live, no one has said he qualifies for hospice care.
He can’t walk, toilet, bathe, cook or undress/dress himself due to his weakness.
Yesterday he told me that in 2 weeks he'd like to see if he can go home. I think this is due to the cost of housing him at the nursing home. He has Medicare Advantage and we are now into co-pay days.
I think about how being home would be good psychologically for him but how??
I would come help him get situated for a week or two but I have a husband and 9 yr old daughter & job in another state. I don’t think physically I could lift my father (he’s morbidly obese).
I know there are nursing agencies where you hire caregivers. He would need round the clock care since he is basically bedridden.
Do you have any advice? What have you done if you had a similar situation?

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Some times in life (and death) there are no good answers, so we must choose between bad and worse. People do remain in their homes at the end of life but that takes a huge amount of dedication from someone who can devote themselves 24/7 for the time it takes as well as a huge amount of $$ for the nursing care and specialized equipment needed. IMO a nursing home or hospice facility can offer superior care for people like your father because that's what they do: bathing, changing him after he is soiled, preparing appropriate meals, monitoring him for discomfort and pressure sores etc, and having an RN experienced in end of life available around the clock are things that are very hard to duplicate at home.
Helpful Answer (9)
Reply to cwillie

Why do you think that ‘being home would be good psychologically for him’? It wouldn’t be good if it turns out to be a disaster and he has to go back to the nursing home – that’s if there is a bed for him at that stage. It would be very disruptive and distressing for him as well as for you. And it has all the hallmarks of a disaster, as you know already.

A common way to deal with this is to say: ‘yes we can try you going home as soon as the doctor recommends it’. It’s reasonable, even if you are very sure that the doctor won’t ever recommend it. If he argues, say it's a condition of the co-pay. Get a recommendation from your own GP s well – this sounds like a recipe for you to destroy your back, as well as your peace of mind and your family. This really is a ‘least worse’ situation. Be brave, it's a hard time.
Helpful Answer (9)
Reply to MargaretMcKen
Llamalover47 Feb 24, 2021
Margaret: Stellar response.
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Your father told the wrong person! If he wants to go home to receive palliative care and full support, he needs to discuss this with his medical and care team and find out what his options are.

Of course you want to be kept informed but it would be a mistake for you to get involved in the practical arrangements. If your father is going to remain at home with support, he needs to be able to form his own relationships with the agencies and services providing it.

It is out of the question that you might be required to lift your father physically, and that would be true even if he were a snake-hipped sylph and you were Arnold Schwarzenegger. Moving and handling are tasks for people with training (ideally) and the right equipment. It wouldn't hurt to find out if you can get some basic training, you never know when it might come in useful, but in any case don't let that worry you.
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Reply to Countrymouse

Hospice at home for someone like your Dad would be a huge undertaking. It would require 24/7 care. A nurse only comes out 2 or 3x a week. Same with an aide that comes basically to bath him. The rest of the time he would need to hire help. Hiring help is expensive and you can not depend on them. They have lives too. And we are still in COVID. No guarantees that aides will not bring it into the home even if vaccinated. No one is 100% sure how the vaccine will work.

The Rehab will not release Dad unless its a "safe discharge". He will have to show that he will have the care he needs when he gets home. If he is in rehab the 100 days Medicare allows, the cost to him could be 12k at least. After that, if he can't pay approx 10k a month private pay he will need to apply for Medicaid and that means his SS and any pension will need to go towards his care.

I know this is overwhelming. And if you suffer from anxiety, you should not be doing constant care especially with Dads weight. Personally, I think him staying in Skilled nursing is the best thing for him.
Helpful Answer (6)
Reply to JoAnn29

When my Papa was in Skilled Nursing with COPD, he said he wanted to go home. But he meant the way it was before he went downhill. He meant living alone, no help, no aides. It was a fantasy in his head, that he believed he could make real.

This could be what your father means. If so, you are spinning your wheels for no reason - since he obviously can’t go home alone. You should ask him his plan.
Helpful Answer (6)
Reply to BeckyT

Personally, I feel that’s it’s not a realistic choice at all. But, it’s what he wants so I feel I have to investigate it.
I so appreciate this forum and your input.
I've read some of the burnout forum discussions and it hurts my heart. I’m scared about what is going to happen. I already have anxiety issues and I don’t want to get trapped in a situation where I’ve taken on caregiver role 100% & my dad is dependent on me and I can’t get back to my life & family. But, obviously I want my dad to be cared for well.
Helpful Answer (5)
Reply to LAnn123

LAnn123, what a sad situation. I’m very sorry you and your dad are going through this.

I’m afraid the morbid obesity seems like a dealbreaker, unfortunately. I care for my quadriplegic dad and even with equipment, there is a bit of lifting and positioning. But while not thin, he isn’t very big. I can’t imagine how caregiving is done with a morbidly obese person. Perhaps with 2 or 3 aides?

Besides all the other issues, it seems as if it would be very difficult for you or paid caregivers to take care of him safely in his home.
Helpful Answer (5)
Reply to SnoopyLove

I couldn't wait to read through the other comments so I could write one that's bursting to get from my brain to the computer: Is there ANY way your father could be brought to a nursing home close to where you live? If so, he would get the care he needs, but you and your family could visit easily and often so he could almost feel he is "at home". This would be a reasonable "compromise" if it can be achieved.
Helpful Answer (4)
Reply to jacobsonbob

My parents had 24 hour care for years. Fortunately they had a lot of money for caregivers. The agency was private and not well run, but the caregivers were good. They did give medications, cook, clean, do laundry, help with dressing, toileting, showers, etc. The difficult part will be the lifting. My brother had ALS and got a Hoyer lift through the ALS association, I think you could rent one. At this point, I would do some research ( how much would caregivers charge in his area and how much for the rental lift) then explain to your father what going home would mean and that you cannot be there. (You could probably do a couple of weekend visits with your daughter?) If dad thinks the cost is prohibitive where he is now, he may decide to stay after hearing the alternative. Does he have a tablet or computer for Zoom calls with you? Can you arrange to visit? As painful as it is, you cannot do the job of caring for your father. I’m adding you to my prayer list, LAnn.
Helpful Answer (3)
Reply to ConnieCCH

Imho, it would be an impossibility for you to bring him home.
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Reply to Llamalover47

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