When to seek hospice assessment?

tiffjoybutler

Hi,

My mother is my father main caregiver but I see her increasingly doing more than her body can handle. She is not getting enough sleep because he keeps her up at night. She has to hold him up, and now she's starting to feed him. My father is a different person he was in the Spring. Now he sleeps constantly and barely holds conversations. I am so deeply sadden to see him this way. I worry it will get worse. They say he has vascular dementia but his mother had Alzheimer's so I sometimes worry if he has that. My mom and sister don't think it's time to seek hospice but I do. I can't even talk to my father anymore. His former self has faded but sometimes comes back for fleeting moments. Right now, he is at rehabilitation center because his congestive heart failure built up his fluid and after the fluid drained, his body needs more strength. How can we prove that he needs 24/7 home aide service? When is a good time to seek a hospice assessment?

Thank you.

NizhoniGrrl

Talk to the care manager at the rehab about your concerns and placement post-rehab. They should be able to talk to you frankly about his condition and options.

M1

Its certainly not too soon for hospice, but they do not provide 24/7 help in the home. There are inpatient hospices in some locations however, and perhaps you should inquire about that.

Jeanne C.

If it helps, explain to your mom and sister that hospice provides comfort care. They will send a nurse to his location weekly who coordinates with the hospice doctor. We also have a CNA who comes to bathe my husband as well as a chaplain and music therapy. They provide a social worker who can help manage care needs (my husband's hospice social worker is incredible). It doesn't mean he's ready to die. It means that he has a team working to make sure that he's well cared for and comfortable. We're going on 6 months with hospice. I didn't think it was time at first, but now I know how much they have helped to improve my husband's quality of life. I'm so glad to have them.

M1 is correct that longterm 24 hour care is not part of hospice or really any Medicare service. The rehab program may be able to extend his care while he recuperates. For longterm care your family is going to need to look at private pay or Medicaid options.

tiffjoybutler

Thank you so much, everyone, for your quick and thorough responses! Right now, we're dependent on hospital visits and that's why my mother and sisters don't want to seek hospice right now. We see his dementia progressing but he is still walking around and able to go down stairs even though its tough for him. He went to hospital for Covid recently and in September, his fluid built up so he had to go to ER to stabilize his congestive heart failure. Good to know that hospice isn't 24/7 care. I just wish my mother had more support weekly and daily and I hope we can advocate for more insured support somehow. Thanks again for all the great advice!

Quilting brings calm

You are dependent on hospital visits? What are you depending on them for? Do you mean that you still want your dad to go to the hospital for treatment for various illnesses?
Yes, hospice means that your dad will be placed on comfort care status. Meaning he won’t go to the hospital, his medications will be reviewed with an eye towards keeping only those which serve to keep him comfortable.

He would get a hospital type bed if needed, be provided with depends and wipes if needed. Get an aid to help with a shower a couple times a week, visits from a nurse a couple times a week, visits from a chaplain or social worker.