If all meds are discontinued for Hospice, he will pass from untreated seizures and metastatic brain cancer. Due to his confusion, he believes he is in rehab for strengthening to return home. I would appreciate suggestions on explaining this transition to him.
From your profile:
"Husband has dementia and cognitive issues related to brain cancer treatment. He is very self centered and does not appreciate that I am doing everything since he is in a wheelchair, can't drive, can't make sense."
Is there a reason that he has to know?
Would letting him think what he wants be a terrible thing?
If nothing is to be gained by him, choose other subjects.
If he requests PT, see if someone who helps care for him can do passive motion type movements (within the hospice framework).
Safety Peace Comfort.
This I know firsthand, as my husband who had seizures shortly after having a massive stroke in 1996 and ended up under hospice care in our home for 22 months, from Dec. 2018 until his death in Sept. 2020. He was on 3 different high doses of seizure medications to keep them under control prior to going under hospice care, and they kept him on all of his medications(not just his seizure ones)until he was "actively" dying. But even then they supplied me with a liquid medication that I had to put in his picc line to keep his seizures under control, as he started having seizures a lot then.
The job of hospice is to keep a person as comfortable as possible so they can transition from this life to the next. They won't withhold a needed medication, but of course won't be treating his cancer in anyway other than to give him pain medication.
And even though my husband(who had vascular dementia)was under hospice care for the last 22 months of his life, I don't think he ever really understood that being under their care meant that he was dying. And of course I didn't mention it to him either, as I just wanted to be able to enjoy whatever time I had left with him.
Wishing you the very best on the road ahead.
I am so sorry you are going thru this.
I suggest you talk to the hospice social worker and ask for some assistance finding therapy for yourself. You've been through a lot as has he, and you do need a way to get some peace within yourself.
There is absolutely no reason to try to get him to understand the transition he's making. Try to find it in yourself to have compassion for him, and seek compassion for yourself elsewhere. (Also learn about what hospice does and does not do.)
I wish you all the best
He will probably not comprehend long term what is going on.
The one change he may notice is that he would no longer be getting Physical or Occupational Therapy.
But these are things that you can work on with him if he still wants to "regain strength"
Hospice will keep him comfortable.
If you do not want him to know he is on Hospice you can ask that they not tell him. That is possible. It will be some different people taking care of some aspects of his care but the regular staff where he is will still be there.
Why ever would you think that someone with his medical condition 'should' be able to 'get it'? What would you 'save him' from?
If he finds it cheering or comforting to think to a future when he is strong and well, let him. You don't have to nourish a false hope, just reassure him that all will be for the best. We all of us can only do one day at a time.
Is he a religious person?
Just allow him to think that he is continuing with treatments to help him to feel better.
Do everything you can to help him to feel happy and comfortable.
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