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How Long till Death?
Posted: Monday, October 17, 2022 1:02 PM
Joined: 10/17/2022
Posts: 1

I know this sounds like a morbid question. My sister is 57 and has reached the 7th level of the disease. She has Bensons syndrome, which is extremely rare and it has taken her eyesight.

She lost 35 Pounds over the past year, and the Dr's are saying that it is linear and we should expect her to lose the same or more in the following year. At that time, they gave her a life expectancy of 6 - 18 months.

Since then, which was maybe a month ago, her legs no longer work. She barely eats and has maybe one bowel movement a week. She's now losing 4 - 5 pounds a week.

Currently she has in-home hospice care, but they will be moving her to out of home very soon, I suspect. She is in North Carolina with her husband and I am in Georgia. My elderly parents are currently living with me from being displaced from Hurricane Ian. The plan was to all get together this Christmas, but from the rapid rate of decline, I'm not so sure she'll make it that long. And to be honest, we hope she doesn't. My brother-in-law has been a gift from God taking care of her. We don't want her or him or any of us to suffer any longer.

She currently weights about 110 and is losing 4 - 5lbs a week, but I suspect, that will increase. At that rate, what kind of life span can we anticipate so we can begin to prepare for the inevitable?

Thanks for your answers in advance.
Michael Ellenbogen
Posted: Monday, October 17, 2022 1:14 PM
Joined: 11/30/2011
Posts: 4494

The question I would have was what was her wishes?

Amy Joy
Posted: Monday, October 17, 2022 8:21 PM
Joined: 9/5/2022
Posts: 69

So sorry to hear that.

My moms mom died of dementia in 2003 at 84 in a nursing home.

My mom is in same nursing home with dementia at 78 and not doing well.

We hope for a cure soon.

Have a nice night.

Posted: Sunday, October 23, 2022 7:36 AM
Joined: 6/13/2020
Posts: 557


If I were you, I would go to see her. I wouldn’t wait Christmas.

I repatriated my partner in august, from a MCF in Tunisia where they couldn’t anymore manage his behavior. He had Alzheimer, a frontal form. He was 53.

He was barely eating and already had lost 6 to 8 kg (till this he had still stock). During 1 month here at hospital, in good days, he was eating 4 yogourts or apple compotes. It was better when I was there but I couldn’t be there for all his meals because I was working. I think that after that he lost 8kg more and was about 62kg.

And then it was less and less. At a moment, he decided not to eat anymore (as he was saying « I stop » I think that it is his decision). We could only give him fruit juice. He certainly has lost 8kg in the 2 weeks he survived. Indeed everything went very quickly. He was transferred to palliative care and there he was sedated not to suffer. I mentioned that his will was not to be fed nor hydrated and to be sedated. 

I wasn’t expecting such a progression and was shocked. There were also certainly epileptic crisis that accelerated the decline, but we won’t know.

I think that you brother in law could appreciate your presence with him, not to be alone in this very sad moment. Perhaps ask him if you can go.

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