Thursday, August 28, 2008

Letting my mother die

Sorry for two bummer posts in a row, but today would have been my mother's 75th birthday. She died in 1999, two days shy of her 66th, after suffering for about 10 years with an insidious neurological disease called Dementia with Lewy Bodies, or Lewy Body Disease. You can read more about it here. Suffice to say, take the worst parts of Parkinson's and Alzheimer's, combine them in the body of someone you love, and you'll get a sense for how devastating it is.

Frankly, Mom could be somewhat ditzy and forgetful, and was no graceful creature, so we really have no idea when her symptoms started. And for years, we had no name for what was happening to her. It really wasn't until the end that it was labeled and then we had no idea what it was or what it meant. But in her last couple of years, she was completely helpless and dependent. She didn't know her family, though she did smile at familiar faces. She was unable to communicate in any way. She couldn't move. Ultimately, she couldn't make the muscular contractions required for swallowing. At that point, we had a decision to make: keep her alive through forced nutrition via a feeding tube, or suspend nutrition and hydration until she died.

This woman gave me my life. Now I had to help make the decision to terminate hers. It was only mildly ironic. Though she was as defenseless as a newborn, she had no future. There is no cure for this mind-wasting disease. What little of her physiology still functioned was not capable of providing her with a meaningful existence. With sadness and regret, my sisters and father and I agreed she had suffered enough. An IV remained in her vein to give her morphine so that she would not feel distressed as her body's batteries slowly ran out from lack of sustenance. We were told that without food or water, she would die in 1-2 weeks. If I recall correctly, she lasted 15 or 16 days.

On her last day, I said my goodbyes to her, thanked her for being such a wonderful, selfless mother, apologized for what I had to do to her, and kissed her. I sort of wanted to be there at the end, but she went when she was ready. I know that her skin was drawn tightly against the bones of her skull, but thankfully I can't produce the image in my mind. When I think of her today, she is healthy and laughing. Even on the day she died, it occurred to me that it had been a very long time since she had been that way, her real self. Lewy Body Disease is like those pods in Invasion of the Body Snatchers. For a long time, she still looked like my mother, but if you knew her, you could tell that behind her eyes lay a soulless impostor.

A few weeks ago, my wife and daughters and I were in the Berkshires and we visited the Norman Rockwell Museum. Mom loved Rockwell, and the museum has become almost a shrine to us. As I gazed at his works, the silly minutiae of everyday life that can only be called Americana, the deeply felt images in his Four Freedoms and Civil Rights Era paintings, everything that my mother was, was there enframed. Simple, funny, unpretentious, decent, laid-back. When a staff person there, a woman in her late 60s-early 70s, saw my 2-year-old with her hair of copper wire, she said, "If Norman Rockwell were alive today, he would want to paint her. He loved red-haired children." I like to think Mom heard that and was proud.

Of course, Stella never knew her grandmother. Her older sister (by 10 years) was almost three when my mother died. Though my mother was far from her worst, the effects of the disease at that point made her stone-faced; she could walk, but had to be prodded. Mostly, her days were consumed sitting in one place, with a blank expression on her face. My older daughter Hannah was a little afraid of her, yet also had a child's wonderful sense of frank acceptance and compassion. To distinguish between her maternal grandmother, a fit one-time dancer who loved to get down on the floor and play with her first grandchild, and my mother, she called the former Grammy and the latter The Grammy Who Doesn't Smile.

The truly ironic thing is that my mother would have found that very funny.

Well, happy birthday, Mom. Sorry I didn't get you anything this year. But someday when I get published, I'll leave a copy of my book open on a table somewhere so you can drop in and read it.

1 comment:

Marjorie Carmen said...

Greetings, my dear husband has been fighting with the Lewies for about six years now. I participate in the LBDA forums and would like to post some of your "Letting my mother die" piece on that site. I can be reached at
blessings, Marjorie Carmen