[The following story will appear in the upcoming book, Finding Joy with People Who Have Alzheimer’s: New Hope for Caregivers, by Architects of Change Marie Marley, PhD and Daniel C. Potts, MD, FAAN]
The need for relationship is our deepest need. Spiritual and faith traditions teach that the desire for a relationship with God, a “Higher Power,” Being or Consciousness itself (terms for essentially the same entity) is the primary longing which underlies our quest for the fullness of life. This need extends to our relationships with humans, other living things, and even the inanimate world around us. Relationship helps to define our core identity, revealing to us and to the universe who we are.
This deep need for relationship does not go away if we develop Alzheimer’s disease or another dementia. In fact, it actually becomes more pressing as the disease begins to cut our ties to others, and even to ourselves through attacking memory and other elements of cognition.
Those of us who have loved someone through the perilous march of dementia have experienced the challenges of maintaining meaningful relationship late into the course of the disease. Though challenging, it is still possible. And not only possible: it can be very rewarding, and a source of growth for caregivers, as well.
For relationship to be maintained we must believe people with Alzheimer’s or other dementias still retain their personhood. They are ‘still there,’ though it may seem otherwise at times. They are stamped with in incontrovertible identity and innate dignity that nothing can take away. If we don’t espouse that view, then it will be hard to engage them in relationship.
Additionally, for relationship to work we have to look for the essential elements of their personhood. What makes them who they are? What are their likes and dislikes? What characteristics define them and shape the way they interact with the world? What are their most important values and how have they expressed them in their lives? What matters most to them? What are their talents and gifts? What, and whom, do they love?
My wife, Ellen, is no novice when it comes to experiencing dementia in family members. As a young girl she witnessed as Alzheimer’s crept into the life and mind of her maternal grandfather in the days before the disease was well understood. This made a profound impact on her, and brings home the importance of multigenerational efforts to educate and support caregivers of all ages.
Ellen’s paternal grandmother, Margaret (“Maggie” to close relations) was a pillar of her community in northeastern Tennessee. A homemaker, teacher, and church leader with deep family roots in the history of that region and state, she moved from her beloved Appalachia after the death of her husband to be near her son (Ellen’s father) and his family in Huntsville, Alabama.
From all I have heard Ellen and other family members say about Maggie, she was a dear, sweet soul, and a southern lady to the core. Graceful, kind, humble, and a great cook, she was well loved in her community. It didn’t take long for her strength of character and her love and integrity to endear her to a growing circle of friends in her new home.
But Maggie began to experience that startlingly subtle but steadily advancing loss of cognitive function that marks the path of Alzheimer’s disease. Showing rare insight and humility, she voluntarily gave up her car keys and made the decision to move into residential care. What a gift that was to those who cared for her!
I was only fortunate enough to know Maggie during the last few years of her life when she was confined to bed or a reclining wheelchair. She rarely spoke, and sometimes was not fully aware or alert when we visited. But I was able to know Maggie through the loving way her granddaughter, Ellen engaged her in relationship.
When we entered the room, Ellen would move toward her grandmother in a way that demonstrated full presence of being; gentle, compassionate and joyful, expectant for Maggie’s spirit to reach out in a loving embrace like she did when Ellen would run to greet her as a little girl.
“Hey Grandmamma! How are you today? We’re here to see you…we’re so glad to see you today!”
Ellen touched her lovingly, spoke softly and sweetly, paying full attention to her and looking into her eyes at eye level. She told her what was going on currently in her life and the lives of those that meant a lot to her – grandparents want to know about the lives of their grandchildren – and Maggie looked at her, listened, and occasionally smiled. Those smiles were a gift that Ellen will hold onto. And so will I.
Ellen sang to her, fed her, prayer with her, and expressed loved to her in any way she could. And it all was tailored to what she knew of the essential personal traits of her grandmother. It didn’t matter that Maggie didn’t say much anymore. Words mainly express thoughts. But being there and being present expressed much more.
The first time I got to meet Maggie was right before we married, and Ellen wanted to tell of our upcoming wedding and introduce her to the new fiancé. What an honor for me to meet this lady I had heard so much about!
After her usual methods of engaging Maggie in the moment, Ellen asked me to come closer to the bedside. Knowing that her grandmother had been a lifelong Methodist until she moved to Alabama and joined the Presbyterian Church where her son and his family attended (a big surprise to her family!), Ellen chose to introduce me while tapping into that trait which helped to define Maggie’s own identity.
“Grandmamma, I want you to meet my fiancé, Danny. He and I will be getting married soon. And Grandmamma, I think you will really like him. He is a good Methodist boy!”
Old Maggie brightened, straightened up in her bed, got a big smile on her face and in her eyes, and beamed her deep soul over to the strange young man standing at her bedside who would soon receive her granddaughter’s hand in marriage.
“I like that kind!” she surprised us all by saying.
And from that point on I had a meaningful relationship with this woman who was very much still with us, was very much in need of relationship and love, and was very much capable of extending the warmth of her spirit to others who took the time and made the effort to be present for her in the ‘now’ of her existence.
You see, the ‘now’ of her existence had nothing to do with Alzheimer’s disease and everything to do with who Maggie was, and still is.
I like that kind of ‘now.’ And I hope to remember what Maggie and her Granddaughter Ellen have taught me as I seek relationships with other Maggies I will meet along the way.