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My mother is 94 years old with mild Dementia. No one really knows how long one will live with this disease except God. Does anyone have experience taking care of a LO with Dementia and kept your parent/relative at home until the end? What is the longest the body can keep going? I find it amazing my mother's will to survive exceeds the predicted life expectancy of men and women...even so called healthy people? Thank you.

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Essie, you can always call hospice and ask for an assessment if her doctor has not ordered hospice.

I would interview multiple ones and get a feel for their business model, not all hospice are the same and some may go against your personal beliefs and make it harder for you. Read all their literature and then decide which one fits best, also remember that you can fire the hospice if you decide that they are not doing what they promised and it doesn't get fixed by speaking with your representative.
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My ex's mom was diagnosed with Alzheimer's disease at least 10 years ago. She is now 93 years old. She cannot feed herself but she can swallow. She cannot walk. She uses the toilet when her caregiver, my ex, puts her on it. She sits with her eyes closed most of the time. She makes noises but the words are mostly unintelligible. Her mom lived to age 101 with Alzheimer's.
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I read somewhere that those people who suffer from a form of Dementia only last about 5 to 7 years. Because ALZ effects the brain different, those people could live 10 yrs or more.
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Much too long, could be 10 years or more. My mother is 94 and very well may outlive me. She is now in AL and that is where she will stay until she has to be moved into MC or a nursing home.
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Mum had a friend diagnosed with Early Alz around age 60, she lived to her mid 80's. 25 or so years with the disease ravaging her brain, but her body was in good shape.
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In my experience way longer than you would ever believe, and the level of care needed can far exceed anything that can be handled in the home without a whole lot of support. My mom was in fragile health for many years when sin her early 90's there was a dramatic decline and she lost the ability to care for herself. She disappeared by inches over the next several years and although I was determined to keep her with me until the end I made the decision to place her in a nursing home when she lost the ability to transfer into her wheelchair, staying at home would have meant she was totally bed bound. Incredibly she lasted another 18 months there and died at the age of 99, by then as completely dependent as a newborn child.
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Depending on sooooo many variables, it can take many years, 10 or more.
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Hi. You answered your own question with your second sentence. No one does know except God. There are many factors that contribute to how long a person can live. My mother was healthy and fairly active, albeit anti-social. She was a breast cancer survivor but had no other health issues. She took her meds and kept a neat house until she had to go to a facility. Even there, for the first year or so she still kept active. When her brain deteriorated and left her in a world of paranoia, delusions and hallucinations she went downhill fast. At the end, she was nearly comatose. The last time I visited her, three of us couldn’t wake her up.

As for keeping a LO at home, this also is a very personal decision. Some people who have always been easy going and calm will turn mean and uncooperative. They refuse baths and meds. They wander away. They ruin the lives of their caregivers and from what I’ve read on this forum, some people never recover from this experience. On a rare occasion, I read of LO who are cooperative and grateful even through their disease until the end. What a caregiver needs to remember is that they will be doing the work of three shifts of trained caregivers, 24/7/365. No one can predict how this will go either. Unless you take STNA or CNA classes, to my knowledge there aren’t any “caregiver training” classes you can take. If you work, you’ll probably have to quit your job. Unless your LO can pay you, even if you get rare government assistance, it’s not enough to live on, there’s no health insurance and no retirement fund unless you pay for your own. It’s flying by the seat of your pants. Some people stick it out until the end because they agreed to promise their LO they will never “put them away”. And, they wind up hating their loved one for ruining their lives.

Here, we can offer advice based on our own experiences, but no one can make the decision for you.
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EssieMarie Nov 2019
What a cruel disease. Seems that there is 0 quality of life left at the end. So far, my mother has been taking care of her personal toileting and can walk a few feet without falling of course holding on to me for stability. My mil was bedridden but still was able to answer questions and carry on small conversations. She had to be cleaned up every morning after breakfast and then lifted by a hoyer lift into her chair. I really dread the day my mother stops functioning as a living being. Can hospice be called in at some point once the brain stops functioning? If anyone knows, i would appreciate your input. TY
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