Expert: Mary Gordon - 7/31/2008

Question
My mother was diagnosed with A.D.in June 2007, although she was probably showing mild symptoms (which we were missing) for a couple of years. She declined incredibly rapidly.  This was an articulate, intelligent, beautiful woman who played the piano, and read books, and beat every one at SCRABBLE.  I miss her horribly. She was only 71 when she was diagnosed last summer. She was diagnosed in June 2007 and by Dec. of 2007 she was in hospice.  She is currently  in a nursing home:  wheelchair-bound, incontinent, non-ambulatory, she has contractures in her hands, her whole body shakes at times, she can't talk, smile, or recognize anyone.--It is heartbreaking to see her like this.  The staff feeds her a pureed and liquid diet.--They really, really push her to eat.  They are kind, but my mother would not have wanted to be like this.  She has a living will and a DNR.  --The staff is well-meaning, but sometimes my Mom has her mouth shut and they are literally tapping on her lips with a spoon trying to get her to eat.--I know that she would not want that.  They also feed her high calorie nutrition shakes which I pay extra for.  I don't care about the cost, but can I refuse them for her? Do they all get the nutrition shakes at this late stage?

Answer
Hi Lou, I know you are grieving. This phase is like one long goodbye. It really is like having a body laid out without the closure of a funeral. Its heartbreaking to see her come to this, and not be able to do anything to either restore her to what she was, or to help her out of the nightmare. My husband was an only child, and he used to come back from visiting his mom and weep. He felt tortured at the fact she was living out her worst fears, and guilty for hoping for a swift and gentle death for her.  Other relatives stopped visiting because they just couldn't bear it.

No matter what they do at the nursing home, death is probably not too far away. Once a person is bedridden, the survival time is usually not long. The general trend is that the person will take in less and less nutrition and fluids, no matter how they are coaxed or how high calorie the little they eat is. Her ability to swallow will be gradually lost, and she will be susceptible to aspirating and choking. Their weight plumets, they get weaker, they get very prone to infections, their circulation and skin breaks down, they sleep more and more, and finally, their organs fail and they drift away. It sounds awful, but having been through it with my mother in law - it was actually a very quiet, peaceful passing. Her final phase lasted about six weeks during which time she took in less and less. We did not allow tubes or IVs, antibiotics, trips to the OR .My husband was at her side, holding her hand when she took her last breath. She did not seem to be suffering at all, even though in effect, she died from starvation and dehydration.

The most difficult part was just sitting by the bedside and letting nature take its course. Our culture wants to keep on fighting death, even when staying alive seems like a worse prospect. We feel like we should be DOING something.

Given that she is now in the condition she's in, would she not qualify for hospice type palliative care again? It might be time to have a care conference with the doctor and the nursing home. You do not have to allow them to give her special supplements. You can ask them to keep her comfortable and out of pain, and just offer her fluids.

My only question will be - are you ready for her to go?  Are you comfortable with calling off the war?  Are there other family members who should be involved in the discussion ? Every family will deal with the prospect of imminent death differently. Whatever you decide to do, you have to be right with it in your heart, so you can look back on the last days and feel that you did the right thing, no regrets. Certainly, that is the way my husband felt. We did not allow anything beyond pain control and comfort measures. They did continue to offer her fluids and she gradually just stopped taking in anything. I don't think she felt hunger or thirst, or had any idea what any of it was all about when the straw or cup was put to her lips. They kept her mouth moist with glycerine wipes. She seemed very serene. I really felt that she was no longer in there, that everything that made her who she had been was gone. I suppose that is merciful, because I really don't think they are self aware in terms of being frightened or distressed or tortured by any thoughts. All that is behind them.

It was very tough, because the dying can take a long time, and it will be very hard on anyone who loves her.  You have so much courage to be able to recognize that the time to fight for her may be past. She's sort of like a silvery balloon, tied to her body by the most slender of threads, just pulling away to be free.

Absolutely, you can tell them to stop, and give her only the most loving care to keep her out of pain. She must have been a wonderful woman. Look at this loving, brave, strong daughter she's raised. Wherever she is, she must be so proud of you.

Hang in there. This part is the hardest part of the journey. Its like the home stretch, only straight up a steep rocky hill.  I wish both you and her peace.

Mary G.