Expert: Mary Gordon - 1/20/2011

Question
Hello -
Thank you for being so available.  My mother is most likely in Stage 7 of LBD. unable to control her head,limbs, and barely talking.  she has 24/7 caregiver and home hospice.  My question is this - she is still eating pretty regularly (soft foods and 4 cans of "Boost" per day).  I saw a post in which you said your mother lived 2 years(!) in this end stage - is this something that i could expect? Realize you arent able to observe my mom, but i cant imagine someone surviving for 2 years in this state.  Appreciate any advice.

Answer
Hi Ryan, generally, good indicators that death may be coming closer is the start and continuation of a steady weight loss no matter what is tried in terms of hand feeding. They tend to be less and less interested in food, and have more and more problems chewing and swallowing. They  take in less and less, and thus start to lose weight. Many people in their final months will also start to get opportunistic infections as they become more frail and their immune system begins to fail. They talk less and less, and sleep more and more. They are less aware of their surroundings and what is going on around them. They move less and less. Essentially, they start to totally shut down in slow motion.  

So much depend on the overall health of the individual and their age. Obviously, someone who is very elderly and frail with a constellation of health concerns,  is less likely to survive a long time. Their dementia complicates all their other health problems, and as you know, many families opt for palliative care rather than try to actively treat many health concerns (i.e. they feel it is pointless and unkind to put a person with dementia through scary or uncomfortable tests, procedures and treatments).

My mother in law was robustly healthy other than her dementia, so there was nothing to mercifully carry her off before the natural end of dementia. People in later dementia are both incredibly fragile and incredibly tough, and they can turn on a dime - they are kind of like an egg balanced on end. They can amaze you and survive for long periods in very poor condition -  and they can also head into a spiral and succumb to what seem like very minor things with incredible speed. Sometimes a person who is doing very well, will catch a minor infection, and that will be the end of them (i.e. it will lead into pneumonia or other life threatening problem or set off a cascade of complications).

What finally happened with my mother in law is that she started to lose more and more weight until she was incredibly thin and frail. She finally stopped eating no matter how much she was coaxed. She didn't seem to know what food was, or feel hungry. At that point, she was totally helpless, and oblivious to what was around her - so no quality of life at all. She had left a living will and we already had DNR orders on her, but they did ask us if we wanted tubes etc. when she stopped eating and drinking. We just decided that as long as she was comfortable and not in any pain or suffering, enough was enough - we kept trying to feed her by hand, but we did not allow IVs or tubes. She wanted nothing to do with food - she'd ignore you (or perhaps was oblivious) wouldn't open her mouth, or she'd bat your hand or the cup. No tubes is not a decision we made lightly, and we feel strongly we made the right call for  her. Hospice workers were wonderful. Her final spiral lasted about 6 weeks, and although it was brutal on all of us (the watching and waiting), it seemed to be very peaceful and gentle for her, and she seemed quite comfortable and free of pain and distress.

As I know you know, it's the not knowing that is so painful to a family, faced with so much grief and so exhausted by a horrible process that seems to have no closure in sight. I wish I could give you a more difinitive answer. Sounds like everything possible is being done for her to ensure her comfort and serenity, and beyond that, it's a guessing game.

Thinking of you. I know this can feel like a forced march with no end in sight.

Mary