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?
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.
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.
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.
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.
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.
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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