My ailing mother and I had a conversation yesterday that broke through the fog of her dementia enough for her to express her greatest fear as she confronts the end of her life.
My mother is 97 and suffers from serious macular degeneration, deafness and dementia. She still knows my brother and me, though at times I have to persuade her that I am, indeed, her son. She is mostly able to communicate what she feels and thinks, though her vocabulary has become more and more limited and her confusion has increased. She has little short-term or long-term memory left.
When I arrived at her assisted living home yesterday, the aids told me that she had had a very bad morning, had broken a piece of equipment and wanted no one to touch her. They had medicated her to calm her. She sat alone appearing still agitated.
She can’t do much of anything by herself anymore. She needs assistance getting out of bed, using the bathroom, getting dressed, and moving anywhere. For the first 95 years of her life she had been independent and self-sufficient, so her frustration at her incapacities is now severe.
For some time now she has told me that she wants to die, that since all her brothers and sisters are dead, and most of her friends, this is no way to live.
Seeing me yesterday after several bad hours changed her mood. I let her vent and kept touching her and asking her direct questions – “Are you in pain?” “Does anything hurt?” “Do you need to use the bathroom?” “Do you know who I am?” “Do you need anything from me?”
Then she said, despite her past readiness for death, “I don’t want to die!”
“Really, Mom? That’s a change,” I said. “Why do you not want to die now?”
“I don’t want to leave you and everyone,” she answered.
I knew that was true, but I had the sense she was really saying something else, something deeper, trying to tell of a fear about dying that she had not expressed to me before.
I asked on a hunch; “Mom – are you afraid that I will forget you?”
She looked at me (I always sit very close to her with about a foot between my face and hers so she can see and hear me), and then with a clarity she had not had since I had arrived – “Yes!”
I took the opportunity to tell her a fundamental truth about my life, despite her having been a very difficult personality for both my brother and me throughout our lives, the following:
“Mom, let me tell you something. Even now, where ever I go, you are with me, in my heart. After you die and are gone, you will still be here with me in my heart. You have taught me so much about loyalty to family and generosity to everyone, about love and kindness, about giving back to others and trying to make a difference in the world, about making a contribution. That is what you have always tried to do and I believe you did it all really well. Just as Daddy has been with me every day since he died [56 years ago], as I know he has been with you and has been with Michael [my brother], you will be with me always too. Don’t worry about that. I cannot nor do I wish to ever forget you. I love you and am grateful that you are and have been my mother!”
She smiled at me for the first time that day – “I love you so much, John.”
I stayed a while longer. She was convinced that she was holding something in her gnarled hands and she wanted to put it onto a tray sitting on her dresser. I assisted her for a while and then just took her hands in mine and rubbed them and asked her to flex her fingers for exercise. The “sandy” sensation that she had tried to release went away.
It was lunch time, and I left her with her aids. As I walked to my car I was reminded of the concluding verse of one of my favorite e e cummings poems:
…here is the deepest secret nobody knows
here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life
which grows higher than soul can hope or mind can hide
and this is the wonder that keeps the stars apart
i carry your heart (i carry it in my heart)