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?
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
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.
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.
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.
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?
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.
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.
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.
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.
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.
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
But there are no right or wrong answers.
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.
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.)