Expert: Mary Gordon - 6/6/2007

Question
Hi Mary,

My grandmother was diagnosed with Alzheimer's approximately 7 years ago.  She is 86 now.  At first, it was a very gradual decline, but over the past 2 years, it has really done a number on her.  She is bed-ridden, has numerous pressure sores, cannot speak, is doubly incontinent, and has been for about 1 1/2 years,  and has lost about 50 pounds.  She probably weighs about 70 pounds now, and her bones are looking as if they will come through her skin.  My grandfather, her care taker (she is at home), had been using a baby bottle and a baby food maker to puree all of her meals and gave her liquids through her bottle, but she will not take them any more.  She cannot swallow, either, only if you massage her throat will she get water down.  This new part, the swallowing, I mean, has been since 6/1/07, when she began vomiting anything that he fed her.  Since 6/1, she has been sleeping CONSTANTLY.  She opens her eyes for no more than 10 seconds, then she is out again.  We have VNA services 7 days/week, and hospice is involved as well.  

I feel so selfish for saying this, but how much longer will this go on?  She would not have wanted to live this way.  It is ripping me apart to see her everyday with no change.  She has a living will stating no tubes, DNR, etc...

I guess my question is simply how much longer, from your experience, will she survive?  

Answer
Hi Erin, I know this is heartbreaking. My mother in law also died from end stage Alzheimers. I wish there was a good answer for you. I know what you are going through - just when you think it can't get worse, it does, and family members ask themselves how much longer can this go on.

You know your grandmother is in her last days, and our culture has trouble dealing with just being quiet and letting the end unfold. Your grandfather and family have already grappled with some painful issues and made humane and loving choices - calling in hospice and opting for palliative care. The end will come within the next few weeks.

I know this is brutal on everyone, but she is not suffering - this is much harder on the living than the dying. Look at this as a little space to be there with your grandfather as you let your grandmother go together.  This is truly a sacred time, and it can be one of profound growth and meaning for you - you will look back at this and feel heart and soul at peace, that you all did the right thing by her.

Your grandmother has enjoyed a long full life. If you could restore her to health, I know you and your family would move mountains - but it isn't to be, and the best way to show your love is doing exactly what you are all doing - standing by her, holding her hand and letting the end of life come.

When we went through this with my mother in law, we truly did regard this stage as the slow but inevitable going out of the tide. We knew we had already lost her in every way that mattered and that she would not have wanted us to resist the process to try and hold her here. In a real way, she was already gone. Looking back on her very gentle death, my husband (her only child) feels very strongly that the choice was the right one for her and for him - that he did the right thing. He regrets that she had to go through any of it, that she got Alzheimers, that some other illness did not mercifully carry her off prior to the last stages - but he does not regret allowing nature to take its course. She did not seem to be suffering at all - she just sort of faded away over a period of a couple of weeks after she stopped eating. I wonder if what was left of her just decided she had struggled enough and it was time to go.

I hope this has helped. I am so very sorry that you are going through this. Your grandmother is very lucky to have such a loving grandaughter, and a family who give such careful thought to what the kindest and most loving thing to do is. I'm sure she was proud of you - you are evidence of a life well lived. It won't be long now.

Below is a quote that meant a lot to us given the way Alzheimer's takes the person away in slow increments.

Mary G.

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!"