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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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Have Hospice evaluate him.
If he is no longer getting treatment for the End stage liver disease most likely he would qualify.
Next time if he is in rehab ask that he be transferred home. Or if he is in the hospital he can be transferred to home rather than rehab. Hospice can evaluate him either in rehab or in the hospital.
Hospice can have all the equipment there when he gets home. If you are there you can coordinate all this.
You would have to have an agency provide a caregiver(s) that would be there when he arrived.
Medical transport would get him settled in bed.
Hospice will train you and the caregiver how to use any equipment that is needed.
It would be best if you would remain there to oversee each of the caregivers if there is more than 1 a week or so would be good.
With equipment you can easily move someone. (my husband was over 6 foot and over 250 and I easily moved him first using a Sit to Stand then later a Hoyer Lift.)
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It's always best to live our your end of life in your own home.

My 96 yr old dad wanted to stay home.

He is on Medicare which provides Home Health which is not much.

The have a Nurse come by to check on him a couple times a month and change his Cathiter.

You can get an Aide to bathe him 2 times a week.

As far as Csre goes, the cost is expensive usually $10 - up an hr.

I pay $9 an hr which is $1500 a week for 24 7 Care.

If your dad has an extra bedroom, you could hire a Live In and the least expensive I found was $500 a week plus room and board.
I hope you can work this out because living at home will be the happiest for him unless you decide to let him live with you for his final months.
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You seem to mean how you can move him back to his own home. It sounds like he will need 24/7 hired care givers. Even if he qualifies for Hospice, Hospice usually only provides brief visits from a nurse or and aide, 1 or 2 times a week for each. In our case, Hospice visits totalled perhaps 3 hours a week; the remaining 165 hours are the family's responsibility. When family can not provide hands-on care, home health aides have to be hired and paid for out-of-pocket.
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I had a similar situation. My husband fell, had surgery, became a quadreplegic, was in hospitals/nursing homes for over 8 months, COVID prevented visitation the last 3 months, so, when I called for home care, one person told me to get Hospice instead, since home care is 4-6 weeks, and Hospice is 6 months (up to 4x, w.Dr note). They gave me a caretaker (7 days a week-to turn/change him), nurse 2x week (catheter, temp, BP), and ALL supplies (bed mats/cremes/diapers/catheters) and rental equipment (table, bed, wheelchair, hoist) delivered to your home, covered by Medicare/Supplement. They were a blessing to me. Look up which Hospice Visiting Nurse Service serves your area and let them assess, and start the process. At least I spent the last 4 months with my husband, and for that I am so grateful, even though exhausted. Prayers are with you and your father...you cannot do it alone.
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You'll feel much better 5 years from now if you bring him home.
But there are no right or wrong answers.
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MargaretMcKen Mar 2021
How on earth do you know how OP will feel in 5 year's time? Give it a rest!
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How about helping him apply for Medicaid long term care? Can you see Elder law Atty? To go back & forth when you don’t live nearby...what if he falls? What if he is too weak to let in caregiver? You can’t oversee how they are together...or if the person trustworthy...He has a bed where he is..it will be hard to get back in? Encourage him to stay there. Hugs 🤗
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do ask his primary doctor for hospice evaluation... and if you really think you can take care of him...get training on how to move an obese person... it is possible if you know how....
HOSPICE EVALUATION... NOW
MOVE HIM WITHIN A 5 MINUTE DRIVE FROM YOU IF POSSIBLE...
9 months? mine lived 13 months, and I with just a few miles from him.. Other siblings helped out and took care of him too........ You, my friend, are alone and out of state.... Change that... move him close to you since he doesn't have other family members...........
rest assured, if you could visibly see him daily, would help you out immensly... so do what you can as quickly as you can
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mine died of cancer of liver... how or why?don't smoke no drink... what do you do? sorry this was a song..
can't live without a liver a friend told me... he was right.

move him closer if possible,, move him in with you if possible...
either way, get him on hospice...
if he cannot move in with you or close to you,,,, he needs someone by him literally... talk with his insurance... see what they will cover..
and no,,, he needs loved or some one around him... being home and alone and dying is not good psychologically or physically. he has liver cancer... 13 months the most from when he was diagnosed.... prayers are with you.
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If you end up going the 24 hr home caregivers route, it would be better to do it closer to you. You need to be nearby to manage it effectively. What if they dont show? How can you evaluate care if you can't drop by unexpectedly?

It expensive. We had 24/7 caregivers for my mom, after a hospital discharge. It was $10,000/ month at least. And then there's food, and the other house expenses.
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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.
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Llamalover47 Feb 2021
Margaret: Stellar response.
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Imho, it would be an impossibility for you to bring him home.
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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.
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The fact that they say he has "months" to live qualifies him for Hospice.
As a matter of fact the End Stage Liver Disease would qualify him as long as he is seeking no treatment for it.
Contact Hospice of your choice.
They will arrange for the equipment that is needed to be brought to your home and they can also arrange transport as well.
YOU would have to hire caregivers if you can not care for him yourself.
The easiest way would be to go through an agency. That way you will not have to deal with paperwork, taxes, background checks, insurance....
You can get caregivers through an agency that would be there 24/7
BUT all that said. He can be just as comfortable with the caregivers at the rehab/SNF where he is.
IF he still has a house it might be time to begin thinking about clearing it out and selling it and any items that are not wanted by family members.
Check the cost of caregivers 24/7 VS the cost of the facility. Selling the house and items might a way that the cost of the facility would be covered.
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You feel a duty to reply to his want to go home. You, personally can not do for him what is required. The Dr. referres (spell) him to hospice. The hospice nurse works for the hospice Dr. He can prescribe what it takes to "I don't care". The Hospice Nurse or Chaplain can help you communicate your inabilities. Any hospice care at home will not meet his needs...He would not be approved to go home without a caregiver that meets his 24 hr. care requirements. The want to please dad is no longer possable...Your tender ability to tell him...you may need the stated help above. You both are experiencing loss and you need help with this.
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See if your father is eligible for inpatient hospice. I tried to take my father home from rehab and care for him at home with part-time aides. No can do. There comes a time when you have to acknowledge your abilities and when you are in over your head. I tired for four days...he wouldn't eat, he couldn't get out of bed, he would sometimes be lucid/sometimes not. I, too, am an only child and felt a debt of gratitude to him, but when you realize that you'll likely not only injure yourself and the patient, it's time to let the professionals handle it.
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Grandma1954 Feb 2021
Medicare will pay for In-Patient Hospice for pain management or possibly Respite care but past that allotted time the patient pays for the In-Patient room just like they would at any facility.
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Can he afford 24/7 care in his home? If the answer to that is no, he can't go home. If you went there to settle him in, you would not be able to return home leaving him without the same 24/7 care.

Palliative care is pretty much the same as hospice - to keep you comfortable. If they are doing this, he is getting meds to keep him comfortable - not building him up to be walking and doing for himself in the future.

Have you thought about transferring him to a facility close to you so that you can see him/visit with him during his final days? If he has funds for 24 hr care, can it be done in your home? Or at an apt near you?
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Call your local hospice office. They will help. When my Mom was dying the hospice coordinator said most people wait too long to apply for hospice.
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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.
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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.
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If your dad’s doctor is asked for a hospice recommendation it will most likely be given. When my dad’s doctor referred him it was a quick process to getting their services. My dad had in home hospice services and they were a godsend, providing all supplies and much support. But the hourly day to day care was on family to figure out. My dad wasn’t big but I couldn’t lift him at all, even repositioning him in bed wasn’t easy. I hired more help but couldn’t go round the clock, too expensive. My dad didn’t live long on hospice but it was clear that it wasn’t sustainable for long as we were going. In your dad’s situation it seems doing it in home would be a disaster. I’d hope he stays where he is with hospice services added to his care
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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.
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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.
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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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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.
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If he is not seeking treatment he would qualify for Hospice care.
But you can not send him to his home on Hospice with no one to care for him.
So your options would be.

Place him in Skilled Nursing, on Hospice.

Have him brought home and contract with an agency to have caregivers 24/7 with Hospice coming in. This could be expensive if the agency determines that he needs Nursing care not just a caregiver. If there are medications that need to be given, if he can not physically pick up the medication and take it he would need a Nurse.

Or he could be transferred to your home and Hospice will come in and help. You would get the equipment that you need to care for him BUT someone would have to be there for him
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I think the question is not "how" but "should I". I agree with what Cwillie pointed out to you. Please read on this forum under the topic of Burnout. I wish you peace in your heart.
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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.
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