My 99 year old mother lives in AL and about 2 weeks ago her heart rate and oxygen dropped dangerously low. They asked if I wanted her to go to the hospital and I said no. She had issues with this in April and was sent to the hospital. They also had trouble controlling her BP. After declining a pacemaker, they felt it was best to go back home and start hospice. She went to rehab after the hospital stay before returning home. In rehab she seemed to “perk up” and go back to her old self. We never did call in hospice since she was OK. After that hospital and rehab episode, she said “no more hospitals - just let me go naturally if anything happens”.
So now, two weeks ago when it happened they suggested hospice and I agreed. They felt she was “going” and I really thought she would die that night. They started her on oxygen. The next day I went to see her and she was dressed, sitting in her wheelchair much more alert. She keeps asking me what’s going on with her. I never mentioned Hospice, I just tell her we are having extra aids and nurses in to take extra care of you since she was so sick. On top of all this, she has a UTI which has her somewhat confused.

I’ve decided I want to tell her about hospice, but don’t know how to go about it. She was having PT and OT but it has since stopped due to hospice. She keeps asking me when she is getting PT again. I haven’t had the heart to tell her she’s not. I was told that just her age alone would qualify for hospice, so I was thinking of using that theory.

I’m so torn about telling her she’s in hospice or let it ride. She has always been in complete control of her life and it breaks my heart that she is upset that she doesn’t know what’s going on.

Sorry this is so long, I just don’t know what to do.
Thank you for listening.

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Personally, I would not tell her. I guess if there is a perfect set up in a conversation, maybe do it, but I would not set up to have a talk with her about it.

Since she did tell you she wants to go naturally, when she asks about PT, tell her that she's been discharged from it or that when someone doesn't want intervention anymore, PT stops. Tell her it's a good thing. Tell her she can just relax and enjoy. Get her a snack she likes, watch a nice TV show and relax. Don't know if that will work, but worth a try, I think.

Best of luck.
Helpful Answer (1)

My MIL was put on Palliative Care, which, the way it was explained to family was essentially Hospice Care.

They didn't tell MIL.

She finally goes home after a couple of months of rehab and sees a van out front that has "HOSPICE CARE" boldly emblazoned on the sides.

Well, that went over badly. The Hospice nurses worked and worked with family and her and she finally accepted it. I have to say, telling her before taking her home would have been a lot nicer, but these kids have no backbones.

It's been OK. I am not involved. AT ALL. But I have mentioned the hospice company's name to quite a few people and I get the same reaction "Oh, no, not THAT one..they're awful". Well, nothing I can do. I have heard a lot of stories about how they've dropped the ball on a lot of stuff, but I take it all with a grain of salt.

Yes, at 99 your mom should not be expecting PT or OT, but how very hopeful of her to be doing so! I won't make it to 99 and most people won't. I can't imagine having any zest for life at that point--but we're all different.

Tell mom what you think she can handle and don't underestimate what she 'understands' even at age 99. My MIL saw the van and said "I'm DYING?" (at that time, yes, she was, now she's fine. Probably going to go another year.)
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When we set up hospice for my mother, we discreetly just told her she was receiving additional services that were covered by Medicare. We made no mention of it being hospice because there seemed to be no reason to do that. She was not actively dying, we just needed the extra services.
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I wasn't planning on telling my mother she was on hospice but every time a nurse or CNA would come in, they'd say Hi, I'm Susie From Brighton Hospice.

So I told mom, who'd been anti-dying forever, that hospice was on board and would provide her with lots of goods and services she needed from now on. But that she could easily live for 2 years, it was by no means a death diagnosis....just that she wouldn't need to go to the hospital anymore. She was happy to hear no more hospital trips, and accepted what I'd told her.

She passed away 2 months later, peacefully and painlessly, thank God. She was 95 with advanced dementia and CHF.
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I wouldn't mention hospice. I'd answer her questions as well as possible without mentioning The Word, but I wouldn't lie if she brought it up. I'd steer conversation toward the idea that she qualifies for special help right now, and the PT will be there when he gets an opening in his schedule.

That she has been in complete control of her life in the past has no bearing. Things are different now. She is different now. You're in charge. No way of getting around that, so choose the kindest path.

Good luck.
Helpful Answer (6)

It's not that difficult. It is a matter of :

"Mom, do you recall our talking about whether or not you want to continue to be going into the hospital and getting all those tests and bloodwork and treatments and so on? You told us you don't want that anymore, and we agree that you shouldn't have to go through that anymore. The doctors says, as well, that this will just put you through a lot of misery now, as there's just no treatment for 99 years that will do much but make you miserable.
Because of that the PT is stopped as well. Nice as they all are, there isn't much they can do now to make you better. Doctor has discontinued them.
Hospice was ordered by doctor to give you a little better care to keep you comfortable now. They will help with some bathing and visits, and they will help with any pain you might have. They will insure no one puts you in ambulance and takes you off to hospital."

You don't have to go into details of "You will be DEAD in six months the doctors say". And the truth is that hospice often IS ordered now for the extra help they provide. There is NEVER any assurance when someone will die unless you have labs showing shutdown in major organs. What your Mom wants to know is that you will all give her loving care and she won't need to go to hospital again, and that's the case. Keep it simple. You don't need to read out the qualifications for Hospice. Just let her know that the best care now for her is to keep her as comfortable and happy as you can, not to drag her into hospitals.
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Beatty Nov 6, 2023
Excellent advice.

"You told us you don't want that anymore, and we agree that you shouldn't have to go through that anymore".

My LO has also said no more hospitals or tests. I will keep your reply tucked away for the next event.
My mom was on Hospice at her SNF. She did not know this. She just thought she had extra visitors with the Clergy and Social Worker, and had a different CNA a few days a week.
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I wouldn't tell her. Just let her think this is the way life goes. I did not tell daddy I just let him think this is what is needed for now. He never questioned it and at one point I did notice a UTI and they cleared that up. When things got really bad to the point he wasn't leaving the bed (after two weeks he had not been out of the bed) I had Hospice transfer him back home and he died at home with his family next to him. My hospice company was the best.
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