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She just came home from being in the hospital for two weeks with a stomach bug that caused a host of other problems. The doctor decided hospice was the best thing for her. We haven't told her and don't want her to know. She does still understand what is going on sometimes. We (I) am her full time caregiver and I'm worried about her depression getting worse if she knows about hospice. We have told her the nurse comes to check her so she wont have to go back to the hospital for anything.

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You should be fully honest with her . she has a right to be in on decisions for her care.
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Well we just went through this. The staff would say hospice in front of her
( really irritates me how even health people think that elderly cannot hear or understand!). I don't know if she knew and noticed the sign above the facility. I kind of think that she knew at some level. I told her that she needed to have nursing staff to help her. Also she had been there before for respite and obviously survived that, so maybe she didn't associate the care with suddenly passing away. She was on home hospice for five months and at the last, I told her that I was having to send her to the place she had always told me she wanted to go, so not sure if she remembered that she had said hospice care or not. She lasted four days in the home. We do know a few people who were in hospice care for two years or so.
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It could be as simple as just telling her that Medicare pays for some limited in-home care after a hospital stay. That is not even lying. That is the truth. Medicare does pay for doctor approved Hospice care.
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What you have said already should be sufficient. Although she can understand what is going on, generally even early stages of dementia will result in forgetting what you said anyway. Mainly hospice is some extra care, covered by Medicare, that will help you keep her comfortable.

As others have noted, sometimes patients will "graduate" and come off hospice if they improve. You never know! Just keep in mind that if she needs treatment for something like the "bug", you'll have to contact them first as she will have to be taken off hospice in order to get any other treatment(s).

Although she understands what is going on "sometimes", generally even if she is early stages of dementia, short term memory is shot, and she won't remember. Why have to tell her over and over, upsetting her? There really isn't a need to use the word 'hospice', just let her know that Medicare is providing this care to help her - that's all it really is! Nothing says she is going to die or that she has to stay on hospice, so why take a chance of upsetting her?

(we have NEVER used the word dementia with our mother as she has a preconceived notion that it means being "off your rocker." No need to to there! Also, about 9 months after moving her to MC, she started asking about and for her mother. Periodically if she thinks of it, she will ask about her mother, and more recently about her younger sister. I see NO point in telling her each and every time that they are gone. Just mentioning that one of my cousins passed away she wanted to know why no one told her! I had only just found out myself. She would get upset if I told her the others were gone and wouldn't remember it, so it would mean upsetting her over and over. Omitting information isn't the same as lying or fibbing, but fibs/lies are NOT told to hurt her, but rather to protect her!)
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IMHO, telling her may simply add to an already confused mind.
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If she is able to understand ..and especially if you don’t have poa for her , I feel it is actually wrong for her doctors not to tell her ...I’d hate this if it were me, I do understand some folks feel differently ...I would hate for my doctor to tell my family and not myself
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When my step dad was dying last fall, his daughter told him he was dying, but he did not really understand. My sil is a physician which was a godsend as she would talk to the doctors and then explain in lay terms to Mum what was happening.

When my sil visited step dad in hospital, he out and out asked her if he was dying and she did not directly answer him (she did not know his daughter had spilled the beans), but told him he was receiving the best care available and would be kept comfortable. He accepted that answer.

He did received pastoral care from their Minister and as it got closer to the end the Minister was able to gently talk to him about what comes next.

If OP's family member is religious, it is important to ensure they get pastoral care. It can be done without mentioning Hospice or death.
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movingforward19 Dec 2019
There is really good advice in this story. The doctor displayed compassion and kindness and a supportive bedside manner and did not speak of Hospice. Hospice is just a label that doesn't adequately explain the details of services and treatment provided. the Truth is in the details, more care, more support, medicare covers it.
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Why would she need to be told? What you have told her up to this point is the truth and is helpful.
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Why tell her? What good will it do? She already has depression. If you feel like you need to say something, tell her you need more help with her care right now and leave it at that. I don’t notice her age but truthfully, dealing with elderly parents, they can go at any time. But some words, like “ hospice “ may have a different connotation to them so why use them.
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Will more information be useful or helpful to her? You don't have to use the term hospice. It's ok to withhold information.
All you want is for her to be comfortable and that's what you are doing.
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My husband was diagnosed with LBD and has been on Hospice several times and also released when he improves . Hospice is a God sent; since you'll have a shower aide come out 3 x's a week, nurse once a week, social worker, chaplain, respite care (which really help out the caregiver with a much needed break), they also cover supplies needed as well as medication that is associated with her diagnosis. Hospice is as much for you as for your mom, please take advantage of what it offers you, and it is covered by Medicare.
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someone needs to tell her what hospice is all about;
its more care for the entire family and you do not die
because u have been placed on it; utilize the hospice
staff
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When your Mom asks, just tell her hospice isn't what it use to be. They have expanded. They are another layer of care but limited and I know for a fact that some people who go ON hospice actually come OFF of it if they improve. The registered nurse at Hospice House said some patients have actually gone home after getting better. Now they got sick later on down the road but it just wasn't their time to go and they went home. So just tell your parent that Hospice is just another layer of care. Back in 2012, we had them for Mom for a short while and she wasn't in the level to continue so they backed off. She was on hospice once again in the nursing home for an extra layer of care for about 6 weeks. Then came off again. Explain that it is different now. That will ease her anxiety.
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You and only you can make that call.
You should know her better than anyone and you probably know what she would want. Some people want to know and some don't. Now if she isn't going to remember what you tell her than it would be no point in telling her. But if she knows what is going on, then she has the right to know, If you think she would want to know.
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Just a by-the-by...legally speaking, IF she is truly oriented, she has the right to know; the hospice staff also can not be told to lie. However, there is no reason to make an announcement. I would use the gentler, fairly accurate terms suggested, but be aware that direct questions from her... should be answered truthfully, and then be ready to share all the positives that you see.
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Hospice does not mean death. Hospice means better and more attention/visits to the person.

If Hospice has become a "dirty word" in your home, just tell her it's Home Health Care.
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movingforward19 Dec 2019
great advice here! hospice can be a dirty word for some families because of misinformation or bad experiences with other hospice organizations.
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Is that even legal? What diagnosis did the doc give for her to not live another 6 months? Sounds fishy to me...unless she's legally declared with no capacity you have to tell her...wow
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anonymous917984 Dec 2019
I had an uncle that was under the care of Hospice for over 2 years. Every situation is different. Hospice is probably the answer in this case.
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No. Why would you? My friend, who chose the Hospice facility & was the most upbeat person I ever came to know in my 64 years, sank into a deep depression when it was clearly time to go there. She lasted maybe 10 days.
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No need to tell her but please tell the Hospice team that mom does not know she is on Hospice.
Was the "stomach bug" ever diagnosed? Was that the reason for Hospice?
There will also be a CNA that will come in a few times a week to help bathe her and order supplies.
A social worker and chaplain may also visit.
You do not need to accept the services of the CNA, social worker or chaplain. The only one that is required to make visits is the nurse.
But having the CNA is a great help. And it does make it easy to keep the proper supplies on hand.
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No need to tell her. If u feel you need to say anything just say the doctor ordered Homecare. (Where I live Homecare also handles Hospice) I will be nice for you because u get an aid maybe 3x a week and some supplies like Depends.
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I would see no need to tell her. What difference really would it make?
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If she asks, you can tell her it's a part of Medicare to make sure she gets good care! Tell her she has reached the stage where she should be treated well. That having the nurse come to her is actually cheaper for Medicare than for her to get super sick again and have to be rushed to the hospital, and you - the caregiver - fell so much better having the nurse give mom a once over every week.
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If you tell her just tell her that this is the way to get her more care, special program and etc.
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I wouldn’t tell her. My mom graduated from hospice twice in her 2.5 years in the NH. I never told her anything either time and the difference in her care wasn’t obvious to her. Or me either actually. I learned to try to buffer anything that would get her nervous or anxious or sad.
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DizzyBritches Dec 2019
I never knew that anyone ever “graduated” from hospice care. I thought it was purely for end of life; though I should have known that sometimes patients confound their doctors’ expectations. That’s good to know. Thank you.
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Is she getting good, appropriate care?

Is she comfortable?

Do you think that telling her that she is on Hospice would accomplish something positive?

I would leave it alone for now. Sometimes, folks on Hospice improve to the extent that they "graduate" from Hospice and curative, non-palliative treatments can be tried.

If at that time her mind is clear, you can have a talk with her about the pros and cons of doing Hospice care again. I wouldn't bring it up right now.
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