Dad is on dialysis, has lost function from waist down, now large mass found on liver. Wants to keep getting dialysis. Any feedback on care?

I hate to start with questions, but I am trying to get the picture. You say dad has a large mass on his liver. Has the mass been tested to see what it truly is...cancer or not? You also stated that he is at ESRD. So, I have to ask, why are you and dad continuing dialysis?

I know as we all want to fight for our lives, but sometimes we just have to give up the fight and spend our remaining days, weeks or whatever the time we have left with our love ones. I am trying to be mean or hurtful. It is just that what little I see from your post your dad is very ill, and I am sorry that you and your family are going through this.

About how to present to your dad about hospice this is what I did for my dad. My dad had pc. He was dying and everyone understood that except my dad. The cancer had speard throughout his body, but he wanted to fight and really thought he would win. I told my dad that hospice was coming to the home to treat him. That this was away for him to get the Tx he needed without having to go to the hospital. My dad passed away just a few weeks after hospice started. He was good about not having to go to the hospital for Tx and we were good with the lie I had to tell him. However, with my knowledge I knew the out come wasn't good and I came to term with what was best for him. I loved my dad with my whole heart and there isn't a day I don't miss him, but I have never regretted what I had said or done. I would do it all over again the same way. I put his best interest ahead of my own. Sometimes we just have to deal with the truth whatever that is and help them to help themselves, if that makes any sense!


Hugs!!

Palliative care consult or hospice care consult would be my recommend. We none of us want to die, but this is where we are all going. It often helps to sort out what kind of choices need to be made.

Skilled Nursing Facility is what he needs at this point.
I would contact Hospice and have them help you or locate one that is 1) to your liking and 2) had a bed available then contact Hospice.
The SNF will work with Hospice to keep him comfortable.
He can continue dialysis while on Hospice IF it is not the ESRD that makes him Hospice eligible. (Example if the mass is cancer and he seeks no treatment for the cancer that will make him Hospice eligible and he can still continue dialysis)

Ah. I was just about to suggest a hospice evaluation, but I see your father wants to continue dialysis.

You say you *don't* think he's strong enough for a SNF? Why is that? How is he getting to dialysis? - presumably it's not the move itself to a facility that you're worried about, then.

I wonder... would it be worth asking a recommended hospice provider to come and have a no-obligation talk with him about palliative care options? If you are reasonably certain that he is running out of road, if you don't mind my being so blunt, perhaps it would be better to revisit his decision in order to improve his remaining quality of life.

No, in skilled nursing facilities you can either be a subacute rehab patient OR long term care or hospice, and he would not have to do rehab if he is unable or has no achievable goals or just does not want to. That said, if he could potentially regain some mobility he could have a trial of physical therapy. They don't typically do it every day so skipping it on dialysis days could be all right. Do you know why he can't use his legs? That might make a difference in what is possible for him. A facility might be able to do the transport for dialysis, you would have to ask. Funding issues are different also for subacute rehab versus long term care versus hospice. Do your parents have a handle on the finances, with insurance, Medicare, Medicaid, etc., or do they need help sorting that out too??

Having ESRD means you need dialysis to live. Even in hospice, if dialysis keeps him comfortable he could continue, and if the liver mass is benign and he could live for a long time, he would not even qualify for hospice. For hospice, usually a doctor has to say death is expected in about 6 months or less (but they do not have to be right - if the person lives longer it is fine!) It could help a lot to have more clarity about all his diagnoses and prognosis to make the right decisions.

Physical therapy in a LTC facility is restorative and not mandatory. The purpose of PT is to help the resident maintain strength. A good LTC facility will offer enjoyable activities that will help him move and strengthen without it feeling like PT. Near the end, my mother could not participate in activities but did receive hospice services to supplement her nursing home care.

Your choices could involve contacting a Hospice (covered by Medicare/Medicaid) and having them do an evaluation, bringing in home health to provide care (can be expensive) or moving him to a long-term care facility. From what you have shared it looks like he would need to be in a skilled facility. I don't know where you live so I can't recommend care facility.

Another option you have is to hire a Geriatric Care Manager. This person could do the evaluation of your dads needs and coordinate his care. You can go online to the "Aging Life Care Association" and find a Geriatric Care Manager in your area.

I wish you the best.

A nursing home sounds like his next move.

Some nursing homes have a small in-house dialysis unit for those seniors who need hemodialysis. If at all possible ask your case manager or do research on availability of those providers on the internet. There are several tools on the Internet you can use to find dialysis centers in your area.

He needs to go to an SNF.