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My mom is dealing with heart issues, she has been on hospice for 18 months. Hospice has made us get 24/7 care for mom and she does not want it and she does not think she needs it. She has lived alone for 40+ years, she is able to fix food for herself, sitting in a chair and has someone come in 2-5 times a week. Hospice has indicated that the 24/7 care is precautionary, all of the examples they give mom, she is like, so that could happen to anyone. I see her point, I feel her pain, but Hospice has provided me with peace and comfort. She has made great friends with her team, but she thinks they are just wrong on requiring 24/7 care. She is very "with it" mentally and I have always wanted her to make her health decisions, but I am also told that social services can be called and then what happens? I want her to be happy and safe for her last few days, months, years. Any advice, guidance is greatly appreciated!

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Hospice has changed over the years but years ago, it was manditory if you chose Hospice care, there had to be someone there 24/7. Family mostly did this. Didn't hire aids like they do now.

It has nothing to do with her being with it. Its felt that because of the weakening of her heart, someone should be with her. Maybe a deal can be made since a neighbor checks on her often, that someone be with her at night. You don't have to hire someonebit can be family or a friend.
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Thanks for responding susanmac. If possible, I would request an in person meeting with everyone involved. Your mom can be heard, hospice can express their concerns, and you can share yours. There really may be room for compromise, including the use of cameras, caregivers at night only, an emergency button, etc. especially if your mom is cognitively intact. Maybe there is a way to create a safe exit strategy if that is the biggest concern.

I absolutely understand your mom‘s argument of living with risk the way she chooses. I think you and your mom need to really understand what the hospice agency’s bottom line is to make a decision. Good luck and keep us posted.
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Reply to MidwestOT
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susanmac02 Jul 1, 2024
Thank you for your wisdom. Unfortunately, I live 3 1/2 hours away from my mom. I have been in communication with my brothers and will speak to the Hospice Nurse later today. It is just hard. I want what is best for mom and I want her to be happy.
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When Hospice begins one of the agreements that is signed is a Caregiver Agreement. In essence this states if Hospice does not think it is safe for you to remain without a dedicated or 24/7 caregiver they can withdraw their service if you do not have a caregiver.
There must be a reason that the Hospice Team does not think she is safe on her own. Have you talked to the team to find out why they are asking for a 24/7 caregiver? Are they seeing something you are not?
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Made an error, should have replied and not entered another comment. Sorry!
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If you refuse, they would likely contact adult protective services, which they are required to do if they believe the client is at risk. What are their reasons for recommending 24 hour care? That recommendation is not usually made lightly so I’m wondering if we’re missing some information, eg mom being unable to exit the home in case of an emergency. I would talk to the hospice staff directly if you haven’t already and maybe a compromise can be reached.
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susanmac02 Jun 30, 2024
When she started at home hospice, they had concerns about her exiting her building. I contacted a neighbor that would assist her if she needed to be evacuated. He checks on her several times a day and when there was a tornado warning, he contacted her to make sure she moved to her bathroom for protection. We are told that her heart is getting weaker and that is why 24/7 care is needed. One hospice nurse said she doesn't know how she is still alive. She has always had mobility issues, but she knows her limits and is very careful. I am sure for an OT to evaluate her, they would say she shouldn't be alone, but at what point do we need to also consider the aging person's sense of happiness and contentment? I am struggling with trying to listen to her needs/requests and the what ifs that hospice has been discussing with us. This is the hardest thing I have ever had to deal with in my life. She is still very sharp mentally.
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