Timeline

Mirelsa87

Took my mom to her appointment on Thursday and we were given an estimate of how long we have with her and I just don’t believe it. She still walks and talks. Yes, she needs care with showing and toileting and only sometimes how to eat. But has so much personality still. Has anyone ever got an estimate and how accurate was it? I’m not going to lose my mind over it but I want to plan accordingly. I was told to make her have and comfortable and I’m ready to quit my job to do so.

harshedbuzz

@Mirelsa87

IME, it's pretty unusual for doctors to give a hard estimate. More often a range is given because things can change in an instant— a fall, stroke, illness can impact longevity.

There are some signs, though, that are ominous that might be what led the doctor to bring this up. Significant weight loss is a sign that the end may be months, rather than years, away.

My situation was the reverse of yours. Dad's ability performance on MoCA and to speak, ambulate and showtime led his PCP, geripsych, neurologist and even his facility's caregivers and DON to assume he had more time than he did. The doctor who diagnosed dad said a PWD could live 1-15, even 20 years. His geripsych felt he had years left. And his PCP tried to talk us out of MC and into a hospitality-model AL less than 3 months before he passed. I didn't think he had 6 months left at that point; he died 2 1/2 months later.

Dad was conversational and much of his personality was intact until he died. But he'd lost a lot of weight and his physical appearance changed in the last month to the point his gender wasn't obvious. He was still self-feeding and was taking in sufficient calories but it was as if the food went right through him.

HB

SiberianIris

If it were me, I'd ask this doctor (privately - not in front of mom) how they arrived at this estimate, and what specific factors are they basing it on. Was it something in your mother's lab work, vital signs, and co-existing health issues, or was it an estimate based on her age and stage of dementia?

In my experience, these predictions can vary widely, even when someone is on hospice and presumably exhibiting clinical signs of dying.

I wish there was a more accurate way to predict, because it sure would help with logistical and financial planning, and our psychological health.

My maternal grandmother was "here today - gone tomorrow" at age 86 after a day of shopping. Same for my maternal grandfather, who died in his sleep at 84. He was still driving and planning to take another trip to Africa later than year. My mother is 96, two years into her Alz diagnosis, currently in Stage 4. Psychologically, she is ready to go and talks about it openly: "nobody in my family has lived this long" "why am I still here?" "I've lived a good life, I'm ready to go". No health issues other than dementia. Walks unassisted but very slowly. Does all her ADLs with a little prompting. Takes no medication other than Lexapro for the last 2 years (which has been a godsend!) and eye drops for glaucoma. My fear for her (and me) is a long painful slide to and through Stage 7, which could be years…