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Tim’s wife, Liz, is my sister. Tim is 65 and has been in assisted memory care for months. Liz lives independently in the same CCC. Liz has her own medical challenges. When Tim was diagnosed about two years ago we knew this day would come. But, Liz said no when hospice was recommended. Her contact with Tim has been limited by Covid. How do I change her mind?

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I'm sure Liz thinks that hospice means he's about to die. Not so!! Hospice uses certain criteria to determine qualification for its services. Forget about the 6 month rule for Alzheimer's patients. Have a hospice agency evaluate him for their services. If he qualifies, ask the hospice nurse to speak with Liz to discuss the benefits of hospice care. There are many benefits that they provide that are absolutely no cost. My wife was on hospice care for over 15 months, others much longer. It's never too early to request an evaluation. Good luck.
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Mersereb Jul 2020
Thanks for your input. I think you are right about Liz's initial reaction.

I like the idea of having an interview with Hospice. Do you think I / other family should be present for the interview? My sense is we should.

Liz has a variety of medical and cognitive issues. I will ask her medical team if they think she is capable of making this decision (I think they will say no), and how I/we should approach changing her mind.
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Why is he ready for hospice? Who says that they feel he has only approximately 6 months to live, and why do they feel that? I don't think, personally, that it is up to you to change Liz's mind. Why in the world would this be your decision, and not hers? What am I missing?
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Mersereb Jul 2020
Thanks for your input Alva - It is helping me think about this situation. Here are some answers to your questions.
- His doctor and the director of the memory care/assisted living unit all agree that he is ready for Hospice and would be better off with the additional care that Hospice can provide.
- No one says he is 6 months from passing. That is not a hospice requirement if the patient has an Alzheimer's diagnosis.
- You are missing the fact that Liz has a variety of medical and cognitive issues. She is managing independent living, but only because I and other family members help out a lot. On your advice I will ask her medical team if she should be making this kind of decision.
- I only want to change Liz's mind because the evidence I have is that Tim and she would both be better off if I do.
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He is already in MC. I would not think Hospice would be needed unless he is actively dying. The MC will have to bring in a separate agency unless where he is provides Hospice care. Even in a facility setting, Hospice is not there 24/7. They are there for comfort. The facility staff is still responsible for administering meds, ect. Hospice just comes in for check ups. The only thing that may help, is the cost of MC. Hospice provides Depends which the MC maybe charging sister. I think prescriptions are provided.

What I would do is find out is why the doctor is recommending Hospice. Does he feel BIL is actively dying? If not, then what is the benefit of calling Hospice in. I would talk to the head nurse at the MC and see what she thinks. Then I would take that info and go from there.
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Why does she disagree with the doctor's recommendation?

If you want to change her mind - please bear in mind we can't possibly know whether that's even a good idea - you will have to listen to her reasons and set her mind at rest. So start by listening. Not by deciding she's wrong.
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Mersereb Jul 2020
Listening more is a great idea - Thanks.

Liz has a variety of medical and cognitive issues. I am going to ask her medical team for their advice in this situation, then listen to Liz.
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If his wife is thinking clearly, it's really up to her, unless Tim has made his wishes known. I take it that he is in MC and no longer able to make his own decisions. If his doctor suggested it, I would listen and consider it. Maybe, your LO isn't interested, based on some preconceived notions about hospice. I might gently inquire and if she's not on board, leave it be for a while. If she hasn't seen him lately, she may not realize his decline. It can be quite shocking. My LO went down in weight despite eating. Does Tim have that or other medical issues that are contributing.

My LO, who has end stage dementia, has been on hospice for 2 years. Not everyone on hospice dies quickly. Doctors told me she was a candidate for a year prior to that. Even though, she was in MC, she gained quite a bit from hospice care in the MC, such as a whole team of people to look after her, in addition to the MC staff. Another set of eyes is good, imo.

They immediately got her a hospital bed, new high back wheelchair, and other supplies, a bath aid several times a week, weekly nurse visit, social worker for her and the family, and chaplain. They are there 24/7 to help with anything the patient or the family needs, including assessment for pain and pain medication if needed. And, one other benefit is that they are available around the clock, so that you can call them anytime instead of taking your LO to an ER in the middle of the night by ambulance. They assess the matter and that avoids outside doctor visits and ER visits. This is particularly beneficial for families who don't want their LO going to an ER, by themselves, having painful procedures, etc. . Also, no more screening tests and maintenance drugs can be discontinued. And, one of the biggest positives for me, was that we were not attempting to extend life, but, provide comfort and quality to what days were left.

Of course, none of this may matter to your sister. Sometimes, it's just the way they are.
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Mersereb Jul 2020
Thanks much for your thoughts and good reference for Hospice.

Tim recently went through a traumatic (for him and Liz) visit to an ER that I wish could have been avoided. I don't think Liz knows the additional care Tim will receive with Hospice or that being part of Hospice does not mean he is actively dyeing.

Liz has a variety of medical and cognitive issues. I am going to ask her medical team for their advice in this situation, then listen to Liz, then arrange an interview with hospice, then see what she thinks.
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What is the benefit of hospice care? Is he in pain? Is there some service they can provide that he isn't getting in his memory care facility? There is no way to know if hospice will be helpful or not without more info. If they aren't providing some good and necessary service that he's not getting through his memory care it just makes his wife sad for no reason. (Sorry, but my experience with hospice was unlike most people's and made my mother's death a living nightmare so I'm not a super supporter.)
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Mersereb Jul 2020
Thanks - everything I have heard about Hospice has been very positive. I will ask for input from others who have used the hospice organization associated with Tim's memory care unit.
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Liz may have heard that many people who go onto hospice immediately receive large doses of morphine, become comatose and die very quickly. This should only be true if they were already in major pain and near end of life. I’ll quote a post I wrote only a couple of days ago:

'I was on a morphine drip myself, in hospital the night after abdominal surgery. It certainly wasn’t lethal, as you can tell. Its effect depends on the quantity of morphine and the basic health issues of the patient. The quantity of morphine is intended to be in line with the level of pain. If the patient is dying and their body is in the process of closing down, the sedative effect of narcotics would make it quicker. I get the impression that hospice sometimes is a bit heavy handed with the morphine, and death comes more quickly than expected. This can be a shock to the family, and lead people to believe that hospice is a quick death sentence (which certainly isn’t its purpose).

I am fairly sure that the locum doctor overdid the morphine for my mother, which contributed to her death in 24 hours. My mother would have died in a day or two anyway, and I’m glad she had no cancer pain, which came on quite suddenly at the end. Faced with this again, I would question hospice about how much pain and so how much morphine is appropriate. If the patient is not in pain, I would not be happy about heaps of morphine. But I would not argue if they say they really can’t tell.'

I hope that Liz can think the whole issue through, with your help. It does not seem that a lot of morphine is an issue in Tim's case.
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