Need Advice with my Dad

[ftltrish]

Hi! I don't know if anyone can help me, but I figured I would try. My 82 yr old father has was hospitalized with severe pain a month ago and moved to a nursing rehab center. MRI revealed L1 tumor and L5 compression fracture. They are starting him on morphine. But medicare supplement ran out and he is on medicaid, they moved him to a horrendous room, with a crank not electric bed that he can't work. Plus they don't (the home, the doctor, and our local caregiver as none of us kids live in the city) don't even want to tell either of them about the tumor. I don't agree with that either - my sibs are up in the air.
I guess my q's are - do we have options such as hospice care at home with medicaid, or does anyone have exp dealing with a parent in this position? I feel like I have it on both ends - my 6 yr old girl is in remission for leukemia too.

[jellis]

I'm so sorry that you are having trouble making decisions about your dad. Hospice is a wonderful alternative, and he could improve to the point that he could even go off of hospice which a lot of people do. Your family would get a break because the hospice folks are wonderful, medication is delivered to your door, and they monitor him so that if he needs more care, they come more often. Please call them and let them assess your situation. They will tell you if it's time. It's free to your family and an amazing service. You will be relieved! Best wishes to you and your family.

[susan]

Wow, you have a lot on your plate.
I know how hard it is to try to help with parents when you aren't living in the same city, my mom lives in Florida and none of us kids live there.

This is my opinion, I do not represent SCTA or any other organization in this capacity.
There are federal programs, like Medicare. Medicaid regulations are different state to state.
I do discharge planning at a hospital. I don't specialize in home care or hospice (I do rehab and nursing home placements), but I do know some basics. Did his supplement run out or is he no longer considered "skilled" at this point? If he has only been there a month and this is his first time in a nursing home he should still have coverage. You get 100 skilled days per spell of illness under Medicare, 20 at 100% and 80 at 80%, his supplement would pick up the copay during the 80 days. Once the 100 days are gone the supplement no longer covers. Generally supplements only cover what is covered by Medicare. In my state, once you are no longer skilled and Medicare and the supplement no longer pay, you then have to pay privately or if you qualify for Medical Assistance, it pays as intermediate care.

Is your dad able to get around the house on his own? Does he have a caregiver who can stay with him 24/7? Hospice does come in more often than regular home care and it does provide more services than home care, but it doesn't usually provide assistance 24/7. He would have to have someone who can provide the level of help he needs when hospice isn't there. Would he be able to get out of the house in an emergency or call for help in an emergency? Does he need help ambulating to the bathroom or getting meals? He has to be safe when the hospice staff isn't there. It is rare to find hospice providers that provide 24/7 care in the home.

Yes you can come off hospice, but generally that shouldn't be the plan when you choose it. Is your dad at the point where you don't want to pursue additional aggressive care for his condition? Are you interested in treating symptoms and keeping him comfortable as your main goal? That is when it would be appropriate to think about hospice. You could ask the Social Worker at his facility if you can get a Palliative Care consult for him.

If you can't be there to do it in person you could ask if they can arrange a phone conference with the doctor, your dad and you so they can tell him about the tumor. Frankly it is unethical for them not to tell him about his condition. He may be older, but unless he is no longer mentally competent, he still has the right to self-determination. They actually don't have the right to decide he can't be told his diagnosis. My guess is that if he hasn't been told, he knows something is bad wrong. People sometimes think they are protecting the patient, but they often have a suspicion of what the problem is and are kind of relieved to be told. I've also seen patients who chose to not "hear it" and act like it was never said. I think he at least has the right to make that decision for himself.
If they get hospice or palliative care to see him, they can help him through the process. That is their specialty. They can also provide assistance to family as well.

Best wishes to you and your family. It is really a difficult situation that a most of us will eventually be in, either as the family or the patient. Unfortunately most people don't think about it ahead of time and don't put our wishes down in writing to make if easier for our loved ones. Often when you try to talk about it ahead of time, people accuse you of being a downer, but it is a fact that we will all be there eventually. As someone who works with patients in this capacity, I think one of the most loving things you can do for your family is to put your wishes down in writing ahead of time, but that is just my opinion.
Hope this helps.