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My husband (age 92) has been confined to a wheelchair for the last 9 months. He has no use of his legs for an unknown reason. He decided he wanted to die, and was going to stop eating and drinking. He said he was going to do this in January 2025. He also has Congestive Heart Failure and severe edema in his legs. I began preparing for this change in my life, and came to terms with what he was going to do. I don't necessarily think it is the best choice, but the choice was his. I looked into moving to a Continuing Care Community, filled out paperwork, and began getting rid of stuff here.Now he has decided not to speed up his dying, and decided that his present quality of life is OK. He is enrolled in hospice, although I don't think he really qualifies. I am his sole caregiver and am not completely happy about it. My question here is how to cope with this change in path after becoming adjusted to his first plan. I am confused and depressed. Maybe he'll change his mind again. I feel I cannot plan any future, and this weighs heavy on my mental health. Help...

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Does he mean he no longer wants vsed? Or does he want to dump hospice and go back to doctors and tests and physical therapy?
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Dillsburglady Nov 5, 2024
He wants to stay with hospice, but PT is not an option. He had PT for 5 months and only got worse.
He has now taken a turn for the worse, and hasn't been out of bed for 3 days. He is speaking, but I can't understand most of it. I'm scared.
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Actually, it's up to the hospice company as to whether or not a patient qualifies for hospice care, and if they can use a Medicare approved code to get paid. The doctor just writes a hospice referral.

With that said, the hospice nurse feels that your DH has 6 months or less to live. If he's chosen not to end his life via VSED, then so be it. If I were you, I'd hire in home help to give you respite now. Or place DH in a care facility permanently. You can visit daily but still have your own life after years of solo caregiving. You matter too. Don't forget that.

Wishing you the courage to come up with a care plan for dh now that relieves YOU of the burden.
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It's up to the doctor whether hubby does qualify for Hospice or does not.
Many do not carry through plans for VSED when it comes down to it, and many change their minds during the process.
I highly recommend The VSED Handbook by Kate Christie. It is very good with good appendix also for information, legal plans and etc.

Many many people, even after availing themselves of the Right to Die MAiD cocktail of drugs, do not use it. They are comforted to know that they CAN and may choose to, but they often see it through to the end with Hospice or Palliative care when appropriate. So know that this occurence is not at all unusual.

This is your HUSBAND'S choice. The more that you can stay out of it being anything to do with your choice the better.
The only thing that YOU can choose is whether to give care in the home or in a facility for your own good health. My best to you.
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Continue your plan as before. Your husband has more needs than you can possibly keep up as a solo caregiver. He needs a team of caregivers, either people coming in where he is now or moving to a place where around the clock care is available. Don’t resign yourself to keeping this up on your own with each of his changes of opinion. I watched my dad’s progression with CHF, it’s a slow decline marching onward, with the fluid buildups and gasping for breath, weakness, just awful. No way I could have cared for him on my own. You need to guard your own health and mental wellbeing. Be an advocate for your husband but not his hands on caregiver anymore. I wish you both peace
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Reply to Daughterof1930
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I think for us caregivers the hardest part is the unknown, when, how, how will I handle it, the list of unknowns is endless.

And that was taken from you.

I'm wondering if your husband home with you? If he is home with you and you are his full-time caregiver, id say it's way past time for you to get him in a facility, and for you to take better care of yourself.

I can't even imagine how hard this is.

I'm also wondering about his heart failure, can he stop taking meds for that, give him more time, but maybe a more natural death?

Best of luck, I wish I had better answers for you
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Dillsburglady Nov 3, 2024
He is at home. I am his sole caregiver
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