AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question My aunt was diagnosed with early onset Alzheimer's about 10 years ago.
She's now 64, stage 7 and has been living in a nursing home for over 4 years.
She sleeps most of the day and must be fed by an aide. She does not speak,
can't focus on anyone or anything and must be propped up in bed or a
wheelchair. She can't hold her head up but can turn it a bit when she's lying
down. I estimate she's been in this last stage for about 2 years. She was in
fine health prior to this condition; what could her life expectancy be?
Answer Hi Susanne
It's very hard to predict survival time in a person with early onset. Because they are younger, they tend not to be as frail and assorted chronic health problems a more elderly may have. Although Alzheimer's is in itself a fatal illness, many people actually succumb to complications of other illnesses. The Alzheimer's makes it very difficult to diagnose and treat many health problems, and many families opt not to put loved ones through medical procedures that might be scary, or uncomfortable. They decide that quality of life is more important than quantity, and elect just to keep the person happy and comfortable.
Your aunt is certainly in the last stage - generally when a person is at the point she is now qualify for hospice care, because their expected lifespan is under 6 months. However, as you have observed, she's been at this point for two years.
My mother in law also survived two years in the last stage, in a very similar state to your aunt, although she was 15 years older. The final spiral began when despite careful hand feeding, she began to take in less and less food and drink. She would batt your hand away with the cup or spoon. Her weight began to plummet, she got weaker and weaker - and finally slipped into a coma and passed away. That phase took about 6 weeks.
Indicators that your aunt is slipping into her final months are likely to be things like weight loss, difficulty in swallowing or refusing food, recurrent fever, bed sores, upper urinary tract infections and blood infections, aspiration pneumonia (due to swallowing difficulties). Essentially, they get to the point where everything starts to break down.
I know this is very difficult to watch, but I'm sure it's much harder on the family than it is on her. She is blessedly unaware of her condition.
Hope this helps. Because she is relatively young, she may live on longer than expected. However, they are like an egg balanced on end - it doesn't take much to tip them into a decline - even a cold that you or I might shake off can be the beginning of the end for your aunt. She has very little left in way of reserves.
