On a recent Friday night, during one of her rare articulate moments, I asked my 88-year-old mother with Alzheimer’s if she could feel her soul.
“Yes, I certainly can,” she answered slowly, searching for her words, as she struggled to express the reflection of the feelings inside.
“How?” I probed.
“I believe in it. I always have,” she said.
I had come to Grancell Village at the Jewish Home for the Aging to pick up my 90-year-old father and bring him home for Shabbat dinner. My mother was so unusually alert that evening, so I brought her too.
At our house, with our adult children present, her ability to talk continued. I was so surprised that I brought out the volumes of hand-written recipe books that she began in 1947 and asked her if she knew what they were.
She picked them up and felt them. “Of course, I know what these are.”
“What are they?” I asked.
“These are a part of me,” she said slowly. “They are connected to who I am.”
I noticed that she had answered far deeper than saying, “These are my recipe books.”
I didn’t need any more evidence that she indeed felt her soul.
The next day, my father told me, she had reverted back and couldn’t string three words together.
At the age of 56, I have learned that we assume upon ourselves many labels and classifications during our lifetime. As much as we try to hold on, nothing stays static. In the last year, one of my most active identities has become being the son of an Alzheimer’s victim. As each week passes, the week before looks like a time when my mother was capable of miracles. A little more than two years ago she was still driving and cooking Rosh Hashannah dinners for 20 people. Now I don’t even have to worry about her reading this article. Always a voracious reader, she stopped reading a year ago.
My father, who doesn’t appear a day above 60, has stepped up in a big way, always at her side, completing her sentences and her movements, so that they can remain together in their apartment at the Jewish Home.
In my new capacity as the son of an Alzheimer’s victim, I have many questions. Some of them are Jewish questions. One kept me up for hours the other night, leading me to my bookshelf at 3 a.m., combing through volumes to see what insights I might glean. What happens to the soul during Alzheimer’s?
Right now, while my mother is still in physical form, where is her soul? The soul that was so deeply emotional, at times irrational, always larger than life, filled with equal amounts of love and anger, happiness and discontent that could burst forward with dancing, singing, crying, yelling and admonition—the soul that always reached out to those in despair, touching people with deep reservoirs of friendship and concern?
Does that soul still exist? Is it sick, too? Does it also have Alzheimer’s, while she is still alive? Maybe it is completely present, having pulled inside itself until it is released from this ailing body? There are comments my mother still makes as she did at my house that evening, when I can still see sparks of her soul.
When I put this question out to my friend, Larry Neinstein, a cantor and doctor who is head of student health at USC, he had much to say. Larry has multiple myeloma. In the last two years, he has survived through a successful blood transplant and refers to his ongoing chemo treatments as appetizer chemos, main course chemos, dessert chemos and triple high-dose atomic blasts. Larry thrives in remission, holding his breath of life from blood test to blood test. He is an inspiration to our entire circle of friends, who all stand in awe of his active life filled with family, work, hikes, music, trips abroad and his continuing to attend international conferences as a world-renowned keynote speaker on adolescent medicine.
Larry wrote me a few days later:
“The soul, I think, is only a flickering light when we are born,” he wrote. “It gains and grows in strength, meaning and depth throughout our life, through our families, our friends, our colleagues, through the profound moments, through music and through dance. At the same time, our soul is partially emptying itself to others, to our children as they are born, to friends and to the colleagues that we touch. It was like an ‘Ah ha!’ moment, when I was staring at my 1-month-old granddaughter’s eyes, and she was staring back with a combination of emptiness and fullness, of love and yearning, for her soul to have a chance of so much to come.
“I realized at that moment that my soul is in so many places and people, to one small degree or another,” he continued. “And the better life I have led, the deeper that soul that is in me, but the less that is left as I age. If I have led a full life, there will be none left on one side, and an immense amount left elsewhere.”
Another friend of mine, a writer and editor, when I told him about these same questions, asked me in return, “Is this really about the questions? Isn’t all this actually about the relationship with your mother?”
I gave his very penetrating question days of thought. While I might be psychologically in constant relationship with her understanding, and acting out the effect a parent has upon a child, I am no longer in an active give-and-take relationship with my mother.
As I told my brother, wife and kids recently, “The mother I knew is gone. This is not the same woman. This is a remnant of my mother. Shades of my mother have been removed, lifted to some other place. Without her full soul, I may recognize her physical appearance and even some of the things she says; her expressions and her scant memories. But while I give her all the respect and care she deserves—the attention and even interaction—there is no longer the exchange of dynamism and love between us that there once was.
She told me just three years ago, while we were driving on the 405, “You see this freeway? If I ever get Alzheimer’s or any kind of dementia, you roll me out of this door right here and tell them I jumped out myself. I don’t ever want to be living like that in one of those places. Do you hear me?”
That was the mother with whom I was having a relationship. I often wonder what my responsibility is toward the mother I knew and her ebullient soul, as opposed to one at the Jewish Home?
Gary Wexler, a former advertising agency creative director, owns Passion Marketing, a consulting firm to nonprofit organizations worldwide, including major Jewish organizations in the United States, Canada and Israel.