This article appears in a condensed version as a meditation in Seasons of Caring: Meditations for Alzheimer's and Dementia Caregivers, produced by Clergy Against Alzheimer's.
Scripture: "Do you still not perceive or understand? Are your hearts hardened? Do you have eyes, and fail to see? Do you have ears, and fail to hear?" ~ Mark 8: 17b-18a (NRSV)
Quote: "It is only through the heart that one can see rightly." ~Antoine de Saint Exuprey, The Little Prince.
Based on what we have heard 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. But in order to discover the inherent potential and purpose of persons with Alzheimer's, we need to look with the "fresh" eyes of one who seeks the holy - in all of life.
But how do we caregivers do this? How do we go about seeing the true value of our loved ones with Alzheimer's when our vision is blurred by tears and heartache over the losses we are experiencing? How do we do this?
As the disease progresses, persons with Alzheimer's will often become completely dependent. If they live through all the stages of the disease, they eventually become helpless and have no choice but to entrust their lives to us. Although caring for a loved one with Alzheimer's is an honor, it is not easy. It can be overwhelming; it can generate suffering which appears as anger, resentment or depression caused from loss and feeling powerless; and it can create irreparable conflict within families. But caregivers still do have choices. Caregiving can become the greatest burden of our lives, or the greatest blessing. Let this be an invitation to look for and choose blessing.
Through my eyes - that were blessed by caring for my mother - I developed a clear vision of people with Alzheimer's. I see that they 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.
In 2007, after other family members had moved away from my hometown of Dubuque, Iowa, my mother, who was diagnosed with Alzheimer's six years earlier, was alone there in a nursing home. As I was making plans to move from Boston to Iowa to be Mom's companion and advocate, well-meaning friends and colleagues said to me: "I can't believe you would even consider disrupting your life - and move 1000 miles away - to take care of a person who doesn't even remember who you are. I replied, "Well, I still remember 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 remember their loved ones. Through my eyes, I witnessed the nursing home residents reacting when their children, siblings, spouses, friends, and cherished caregivers came for visits. As soon as they noticed their loved ones approaching, smiles could burst out on their faces; a corner of their mouths could slightly curl; their eyes could light up; their hands could reach out.
Peggy was Mom's next-door neighbor. Her husband had been away for the winter and although they spoke on the phone, she had not seen him for six months. The first day he returned, he respectfully greeted her, asking if he could hug her. She hesitated, but cautiously agreed. He then 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 recognized that they belonged together.
Perhaps her spirit recognized his spirit. That's what I felt was happening with Mom & me. One day shortly after I moved, I came into Mom's 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.
My Mom's diagnosis and her predictable decline called for me to overcome my fearful reactions about Alzheimer's and to become my best self. Alzheimer's disease has challenged me mightily, and stirred up plenty of uncomfortable feelings. But I chose to go very close to this illness and to stay with my mom forever. The result of those choices became an unexpected and precious love story that will be mine for the rest of my life.
If we look beneath the losses of memory and cognitive and motor abilities, we may be surprised to see that persons with Alzheimer's can still show us the true value of life - theirs AND ours. In their unending capacity to give and receive love, persons with Alzheimer's reveal to us the truth about what it means to be a human being. This truth is so beautifully expressed in the words of St. Teresa of Avila: "The important thing is not to think much, but to love much."
Prayer: Holy Spirit, sustain us, please, as we care for our loved ones with Alzheimer's and dementia. Help us to soften our hearts, and to see them through the holy eyes of one who seeks God in every corner of life. Amen