Expert: Mary Gordon - 11/14/2008

Question
My mother is 87 and has Alzheimer's, she has had it for about 8 years this past year she has really declined, she is in a wheel chair,eats very little, and drinks water even less.  She sleeps alot even some days we lay her down at 1:00pm and we have a very hard time to get her up for supper at 6:00pm.  I know that you are not God and do not know when she will go.  My question is on an average of patients you have seen,how long do you think she may have?
Thank  you for your time.  She is on hospice, my sister and dad are I think in denile, keep trying to make her eat, drink water and get her to get up out of bed.  She cry's and it seems like everything is hurting her when we touch her.
Thank you,
Annette

Answer
Hi Annette, this really is the awful stage, as terrible as what went before was - its so hard on everyone.

My guess is less than 6 months. Once they start losing weight, and not drinking enough fluids, they really deteriorate. They start getting infections, and get weaker and weaker, sleep more and more, and everything just starts to shut down.

Hang in there. You are doing the right thing by her. At this point, you know that she is not going to recover in any meaningful way - the slide, however gentle, is one way. I'm so glad you have called in hospice. They can be wonderfully kind and supportive to everyone involved. The goal now is to keep her as comfortable and peaceful as possible.

You might want to talk to her doctor and her hospice workers about painkillers. If she is crying and seems to be in pain, she may well be uncomfortable and distressed, and that is not what you want. You want symptom relief - she should not be in any discomfort, mentally, physically or spiritually. She should have dignity and compassionate caregiving. .

As to your father and sister - our culture has a very hard time with end of life issues, even when we know in our heads that sometimes  continuing to live in such a dreadful and deteriorated condition is worse than the alternative - especially when there is no hope of improvement. We keep focusing on trying to fix things. We lose sight of the idea that quality of life is at least as important as quantity.

Your entire job at this point is to surround her with love, to hold her hand and stroke her face, and let her know how much she is cared for. Even if she doesn't seem to know you are there, you and your family know you are there with her. It's really a sacred time - its very hard in our culture just to be still, and let the tide go out. We can't really be present in the moment, fully there for our loved one, if we are filling our heads and hands with desperate busy work and buzzing thoughts trying to will things to be different than they are. We have to let go of feelings we've failed somehow, of the guilt and the anger and the hopelessness.  

You can't treat the disease, so its time to just cherish the person for everything they've been, and be thankful for all the long years you've had with her. What a blessing to be there for her. I really believe this heart and soul.  When my mother in law went into her final spiral, she just ate and drank less and less over a period of about 6 weeks, lapsed into a coma and passed away very gently with my husband holding her hand. I can't tell you it wasn't hard on everyone - it was very difficult to let go of thoughts of how unfair the whole thing had been - she didn't deserve the journey of her last years.

However, looking back on it, my husband feels truly privileged - I don't know how to describe it. It just felt completely right. It was like watching a little bird on a branch about to fly off, and there was such a stillness about it. It was really meaningful for all of us, and we felt we'd shared something beyond words.

I know you are worried about your sister and dad - some people have a much harder time working through their grief to come to a point of acceptance. I hope the hospice workers are helping them as much as your poor mother. Sometimes its about their own fears as much as anything - facing the death of a loved one not only means the end of a period of their lives, but coming up short against their own mortality as well.

Below my signature is a quote that really captures how we came to feel about what we went through as my mother in law approached her last hours.

Hope this helps. Hang in. Wherever she is, she has so much to be proud of, in her children and her marriage. She has given you a legacy of love, and that stays with you all your days.  

Mary

A Parable of Immortality, by Henry Van Dyke

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, "There she goes!"

Gone where? Gone from my sight ... that is all. She is just as large in mast and hull and spar as she was when she left my side and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her. And just at the moment when someone at my side says, "There she goes! there are other eyes watching her coming and other voices ready to take up the glad shout, "Here she comes!"