Expert: Mary Gordon - 1/12/2009

Question
Hi Marry
Well I will keep this brief. I have been reading your questions and answers for over 5 years now. What a great wealth on knowledge for anyone who has a loved one with AD. My Mom is at and in the final stages of AD. First diagnosis over 11 years ago. She is a fighter. That is what brings me to you now. She entered assisted living (lock down) as our kids call it 7 years ago. As you know they go through stages then a plateau then anther and so on and so on. Our latest decline was a small stroke and notable weight loss. She is at 64 lb has been on hospice for 2 years and has not been able to speak or recognize anyone for at least 2 years; she has to be hand fed and all her needs taken care of by a care taker. Is this latest decline (Stroke /weight loss) a sign that the end is near. We have a DNR in place.
Thanks for everything you do
Gerry


Answer
Hi Gerry, I really feel for you. It sounds like you've been trudging down the long road for a long, long time. Progressive dementias just aren't like any other illness for a family to cope with. The grief is just so wearing. Its a relentless on-going process - and its not about the prospect of your mother's death, but about the losses to her own existence, and inevitably, the lives of everyone who loves her. You've been watching her lose ground for a very long time. You grieve with each loss - each time she has gone down a notch, with each reminder of what was and what her life has become.

None of it comes in neat orderly packages either. So many emotions all at the same time, and some conflicting - that mixture of pain and hope, with guilt thrown in for good measure. You want her suffering to end, but that means her death, so you feel conflicted about wishing for that. You want to hope for a better future, but know there isn't one for her.  There is no happy outcome, just a closure.

Weight loss is often a signal that she's coming into the final spiral. After all, even if her health remains relatively stable, she has absolutely no reserves left at 64 lb (that's about the weight of an 8 year old girl).  A 10% weight loss over the last 6 months is a reasonably good indicator that she is not able to consistently take in enough calories to sustain her, even with careful hand feeding. She must be very frail. Her body is consuming itself and she will get weaker and weaker. She's like something wispy balancing on a branch in the wind - it will take next to nothing to tip the scales. It's almost inevitable that shortly she will have some minor infection or tiny stroke, and it will lead to the end.

As you know, she's at 7D on Dr. Reisberg's Functional Assessment Staging (sometimes called FAST). Mean survival at this stage is only about 3.2 months. I've also seen Morality Risk Indicies that would suggest the odds of her passing within the next few months are very high - these indicies use a scoring system to determine overall risk of mortality. On the list are things like low weight, being bedridden, unable to take in enough calories, sleeping all the time, age, bowel incontinence, being totally dependent, an unstable medical history (such as her stroke).  Obviously, she is going to score high for risk  - but having said that, you just never know.  

It is amazing how long a person like your mother can hang on. Life is both incredibly fragile and incredibly durable. People die from such small and inconsequential seeming events -a slip on the steps - or they hang on like your mom, against all odds, in a body so frail no one can believe they can survive. She must have been something!

You are doing everything you can do. All the right things are in place to ensure she is  looked after in a compassionate and dignified way.

We none of us are very good at being still and present in the moment - and just being there with the person. It's in the nature of our lives to be always doing something, always looking for things that need doing or looking back or ahead, and tugging and pulling one way or the other. So there is one more gift she's giving you. You can't do anything but sit there and hold her hand and just be there with her in that space between life and death. I don't think the end is far away.

Thinking of you.

Mary G.