Expert: Mary Gordon - 7/31/2004

Question
My 64 year old husband is now in the end stage of Alzheimer's Disease. He is in a local nursing home and he no longer recognizes me. He is not able to focus or concentrate on conversations or any activies but he is eating. He is very thin though becasue all he does is pace! He talks infrequently and when he does talk it is only one word and not always relevant to what is going on around him. THe severity of his disease came on very suddenly - literally overnight- he went from no home care to needing a nusring home overnight! He has been in the last stage of the disease for the past 10 months or so. My question is where is the spirit of the man I knew and loved? It haunts me wondering where he is as the man here bears no resemblence to the man I loved and married. I have a DNR order for him as I know in my heart that he would not want to live like this! The statement that you made in one of your other answers really hit home for me as it is like seeing his corpse laid out with no funeral and no closure!

Answer
Dear Colleen,

I truly feel for you - this is such a hard, hard thing to experience. I know when my mother in law reached that stage, we began to pray for something mercifully to carry her away - and then felt guilty for wishing the end would come for her. We did feel she was gone in everyway that mattered - but it was as though she was caught somewhere between heaven and earth - not quite alive, but not yet free. Every now and then we'd see a tiny glimpse of her just for a flash, and some wild irrational hope would arise. It was agony for everyone who loved her, particularly since we knew that living in that twilight state was her worst fear, and she would have been mortified to see her own end. Like you, we elected for palliative care only - no extraordinary measures, no rescusitation, no tubes...just keep her comfortable and free from pain and let the tide go gently and slowly out on its own. Culturally, just standing by, holding a hand and letting death come is hard for us - although if we really think about it, there are things worse than death, and too often, what we do to fight death is more about our own fears and reluctance to let go of what is already gone beyond our grasp,  than what is the most kind and loving thing to do for our dear ones.

You ask me where he is - and only your heart can tell you that. For me, its as though Alzheimer's unstitches the edges of the soul from the body, so some small bit still clings until the last stitch unravels. He may be receding from view, like a boat on the horizon, but whereever he is or whereever he is heading, he knows you love him. He is so lucky to have had a happy marriage, and to have you there looking out for him.

Its so unfair that this should happen to both of you so young - neither of you deserved this. Its lousy, and you have every right to be furious, frustrated, perplexed and distraught. It must be very hard learning to be without a partner again - and doubly hard when the physical body of the man you loved  
seems to live on, without him really in residence.

As you know, as things progress, there will be less of everything. My mother in law lost her ability to walk a long time before her death, and this is common. Basically, she spend the last many months sleeping in a chair, unable to walk, talk, recognize anyone. The hardest thing in front of you, if he is not mercifully carried off by something else (and many are, since they become so fragile), is that he will stop taking in enough food or fluids, and will slowly fade away. This is what happened to my mother in law - and it seems hard to believe, but they don't seem to feel hunger or thirst or any discomfort. We did not allow feeding tubes or IV lines - we did offer her food and drink, and let her take what she would (which was less and less), and we let her go. It was very gentle, and peaceful, and we don't regret what we did for a second.

I wish there was something I could say to make this easier. There is nothing on this earth harder than doing what you are doing - standing by watching him go, and knowing there is nothing to be done but hold his hand.

You are in my thoughts - and sincerely hope you have the support of other family members to help you through this awful thing.

Mary G.