Meeting Alzheimer’s: Companionship for Caregivers
“Caregiving is a defining moral practice. It is a practice of empathic imagination, responsibility, witnessing and solidarity with those in great need. It is a moral practice that makes caregivers, and at times even the care receivers, more present, and thereby more fully human.”
—Dr. Arthur Kleinman, Harvard Medical School Professor and primary caregiver for his wife, Joan
Based on what we know about Alzheimer’s disease and the observations we may make with “eyes to see but do not see” and “ears to hear but do not hear,” we could erroneously conclude that the potential and purpose of persons with Alzheimer’s is all used up. In order to discover their potential and purpose, we must look at them with the “fresh” eyes of one who is looking for the holy. Then, it is up to us—those who know and love persons with Alzheimer’s—to reveal their value so the rest of the world can also see and appreciate them.
Through my eyes I can see clearly that people with Alzheimer’s still have the potential to inspire us, teach us, love us, heal us, amuse us, befriend us, calm us, touch us, energize us, enlighten us, empower us, forgive us, nurture us, open our hearts, bring out the best in us, and bring meaning and purpose into our lives. We may be surprised to realize that persons with Alzheimer’s still have the capacity to show us how to be humble and trusting and courageous and receptive; how to be authentically ourselves in this present moment; how to be guileless, innocent and completely without sin.
If we look beneath memory loss and the inability to reason, we may be surprised to discover that persons with Alzheimer’s reveal to us, moment by moment, the true value of life—a fearless, unending capacity to give and receive love.
Personal Story
“Hope is not about believing that we can change things. Hope is believing that what we do makes a difference.”
—Vaclav Havel
In July of 2007, I had just arrived in Dubuque, Iowa for a seven-week visit with my mother, who had Alzheimer’s. The last of my immediate family had moved away, and Mom was alone there in a nursing home. The purpose of my visit that summer was to assess the possibility of moving to Dubuque from Boston to be Mom’s advocate and companion and comforter on her journey through Alzheimer’s. Well-meaning friends and colleagues challenged the basis of my mission. They expressed disbelief and concern that I would consider leaving my established life in Boston and move half way across the country to care for someone who barely spoke and did not even know who I was. My initial response to this argument was to say, “Well, I still know who she is. And who she is needs me now, more than ever before.”
As I spent more time with Mom and her neighbors in the nursing home, I began to question the premise that people with Alzheimer’s do not know their loved ones. I saw the eyes of nursing home residents light up when their sons, daughters, spouses, friends, and cherished caregivers came for visits. On usually blank faces, smiles burst forth when loved ones approached. One woman’s husband was away for the winter and although they had spoken on the phone, she had not seen him for six months. The first day he returned he took her out for lunch. When they returned, he kissed her goodbye and left her at the nurses’ station. With a dreamy gleam in her eye that resembled a teenager in love, she shouted out to everyone, “I’m going to marry that man!” She did not remember that he was already her husband, but something in her knew they belonged together.
Perhaps her spirit recognized his spirit. That’s what I felt was happening with Mom & me. One day during the summer of 2007, I came into her room and she stopped what she was doing. She looked at me–really looked at me. Then she said, “You. You. It’s you.” It was a moment of pure recognition and belonging, even if she was not exactly clear about the relationship between us.
After those seven weeks, I decided to move to Dubuque without doubt or delay. When friends and colleagues asked about my reasoning, I explained that when I arrived in July, my mother could not get up from a chair without assistance. She could not walk, or feed herself, or catch a ball. When I left in September, she could do all of those things…and more. I moved to be with her because I saw that my presence made a difference in the quality of my mother’s life. With my mother – for my mother, I was being Vaclav Havel’s definition of hope.
Just like Mom was making a difference and being hope for me. Since her Alzheimer’s diagnosis in 2001, Mom has inspired me to heal and forgive old wounds, to develop programs to help other Alzheimer’s caregivers, and to leave Boston and build a wonderful new life for myself in Dubuque. Most importantly, she offered me countless opportunities to be present in the moment, to practice giving and receiving unconditional love, and to recognize the presence of God in every beautiful and terrible corner of life.
Caregivers—and persons with Alzheimer’s as well—have opportunities every day to be hope for each other. It happens in between us—with a smile, a touch, a loving look in each other’s eyes. It happens through witness and empathy, responsibility and solidarity, recognition and belonging. We cannot yet change the prevalence or the course of Alzheimer’s disease. But we can—every one of us can—make a difference in someone’s life. We can be hope.
A Prayer
In the rising of the sun and its going down,
I Remember You.
In the blowing of the wind and in the chill of winter,
I Remember You.
In the opening of the buds and in the rebirth of spring,
I Remember You.
In the blueness of the sky and in the warmth of summer,
I Remember You.
In the rustling of the leaves and in the beauty of autumn,
I Remember You.
In the beginning of the year and when it ends,
I Remember You.
When I am weary and in need of strength,
I Remember You.
When I am lost and sick of heart,
I Remember You.
When I have joy I crave to share,
I remember You.
When I have decisions that are difficult to make,
I Remember You.
When I have achievements that are based on your inspiration,
I remember You.
As long as I live, you too shall live;
For you are now a part of me….
…As I Remember You.
—Adapted from a poem by Rabbis Sylvan Kamens & Jack Riemer
A Spiritual Practice
Pay Attention. Pay attention to your own feelings: of loss, frustration, love, compassion, anger, bitterness, grief, hope. Name them, but do not judge them. Pay attention to the feelings of the one you care for. Even if there is no rational reason for what the person may be feeling, the feelings are real and true. Name the feelings, but do not judge them. Notice moments of lightness or ease. Notice moments of great heaviness. Throughout, notice your breath.
“The important thing is not to think much, but to love much. Do then whatever most stirs you to love.”
—St. Teresa of Avila
Artwork © Kendrick Wronski
- Meeting Alzheimer’s: Companionship for Caregivers - November 11, 2011
