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Sodamntired Asked May 2022

How do you explain to a confused stroke survivor that his care is transitioning from nursing home PT to nursing home hospice?

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. 

funkygrandma59 May 2022
First you must understand that all medications will not be discontinued from hospice. If your loved one suffers from seizures they will continue to keep him on all his seizure medications. Even up to the end they will try to keep him seizure free.
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.

JudyBlueEyes May 2022
Tell him he will go home when the time is right. You are telling the truth. It's just that you are speaking of two different homes... peace to you.

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BarbBrooklyn May 2022
SoDamnTired, welcome!

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?

gladimhere May 2022
He is confused? Dementia? Why try to explain to him? Wouldn't he forget as soon as you explained? Would he understand an explanation? Why put yourself through that?

AnnReid May 2022
Make your decisions about “talk” on what will allow HIM to feel better and most peaceful.

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.

TChamp May 2022
You can't, period, leave him alone. Let him die peacefully believing whatever he wants.

AlvaDeer May 2022
You say he is confused and cannot retain information, so it little matters WHAT you say. I almost always believe in honesty, so if there were real questions from a rational man I would answer them. In the case of advanced cancer in the brain I can see no reason for that. I think continuing the belief that where he is whether "you are in rehab for strengthening" or "They think you have back your strength well as can be done, so you are here to continue to try to heal" is fine. You know this person better than we do. There isn't always a "right" or "wrong". There is often only a best guess. Do your best.

JoAnn29 May 2022
At this point, let him believe what he wants. Time for those little white lies. If you are keeping him in the NH for his Hospice care he doesn't need to know he is under Hospice. The Nurse won't be there everyday and not sure if an aide will be sent in. The nurses who have been caring for him will still be caring for him. Just tell him he will go home when he is strong enough.

I am so sorry you are going thru this.

MJ1929 May 2022
Honestly, you're looking for validation and appreciation from the person least able to give it to you -- a man who is dying and whose brain doesn't work any longer.

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.)

Ohwow323 May 2022
I know exactly how you feel. When my Daddy was in the same position. I just let him think that the doctors have not released you yet but when they do then you can go home. He did come home for the last five days of his life here. But let me tell you I was just there talking to him reminding him of the "good ol' days" how he loved his wife, the fun times of camping, trucking, playing with his kids. My Daddy would make up songs and teach them to us and so I sat there and sang them to him. His kids and grandkids called him and sang to him too. These last days are just to comfort no need to stress him out just let him think what he wants then he will be happy with those thoughts. Prayers for you and your situation!

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