By Martha Stettinius, Author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir”
At age 80, my mother, Judy, is living with advanced dementia (vascular dementia and probable Alzheimer’s disease), and I’ve served as her primary caregiver for 7 years. She’s lived in my home in Upstate New York with my husband and two young children, in assisted living, a rehab center, a “memory care” facility, and a nursing home.
When Mom moved from her isolated, lakeside cottage, where she’d lived alone for 25 years, into my home, she withdrew into her room, often refusing to come out for meals. I worked outside the home, and she refused to go to an adult day program. I knew little about dementia, and I made a lot of assumptions about her capabilities and feelings. Over the years I’ve come to appreciate how my mother remains herself and “here” despite the ravages of the disease. Healing old wounds, our time together has been not a “long good-bye,” as dementia is so often called, but a “long hello.”
When Mom lived with me, I saw her withdrawal and stubbornness as extensions of her often difficult personality, not as symptoms of dementia. I tried, for example, to reason with her by explaining things over and over, and it took me some time to learn more artful ways of communicating. I reached out for help from a local Alzheimer’s caregiver support group, a county Family and Children’s Services caregiver counselor, and a psychologist who specialized in elder care issues. I read a lot of books about dementia care, and the few memoirs available at that time about dementia caregiving. But it would take several more years for me to appreciate all the ways in which my mother remained whole and capable.
After just 3 months of living with Mom it was clear that we each needed more space and independence. Mom lived comfortably for the next 2 ½ years in a nearby assisted living facility, although she spent most of her days staring at the big-screen TV, refusing to go to activities that were geared more for the “independent living” residents. Throughout my visits, her doctor appointments, and our outings for lunch, I continued to judge her behavior as the effect of her life-long personality, not as a sign of a damaged brain.
In 2007 she fell, possibly during a small stroke, fractured her pelvis, and lost some of her ability to speak clearly. She suddenly became incontinent. I visited her daily at the rehab center, and it was there that I began to see dementia differently. I live in an intentional community, and had just attended a community discussion about how we could better support our one neighbor with dementia. The group talked about many things, such as helping people with dementia feel useful and needed, and I felt inspired to try a different approach with my mother. The next day, I decided to visit Mom after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasures we could find.
At a table under a tree in the courtyard, I looked into my mother’s eyes and said, “Mom, I could really use a hug.”
We held onto each other a long time. I took her hands in mine. Pausing to find the right words, Mom said, “The two of us…have come…a long way.”
I smiled and squeezed her hand. “Yes, we really have come a long way.” Was she remembering what we used to be like together, how hard we’d worked over the years to grow closer to each other? I wanted to cry when she said this. Did she really remember all those years, or was she just saying something polite that she might say to anyone she’s known a long time?
“Let’s keep going…in that…direction,” she said. She was still smiling and looking deep into my eyes.
With this, I thought she really did know what she was saying. And that’s all I had ever wanted–“to keep going in that direction.” I wanted us to grow closer, if only by annoying each other less and enjoying each other more.
“Yes, Mom, let’s do that. I’d like that.”
With the incontinence, my mother could no longer live at her assisted living facility, so I moved her to an excellent “memory care” facility. Mom would live in this memory care facility for nearly 3 years—years that seemed her happiest in a long time. Firmly in the middle stages of dementia, she joined the activities, sparked a romance with one of the men, and generally enjoyed living in the moment, no longer tortured by awareness of her disease. I appreciated more and more the gifts of her company, taking time to enjoy her instead of just rushing through my caregiving tasks. However, I still equated my mother’s jumbled language with loss of self. Part of me assumed that because she could no longer speak in long, coherent sentences, she was similarly unable to experience complex emotions or complex thought.
In 2010, when Mom could no longer feed herself and had to move into a nursing home on Medicaid, I learned from several experts in dementia that I might be underestimating my mother’s needs and abilities. At a gerontology conference I listened closely as Dr. G. Allen Power described dementia as a shift in a person’s perception of the world. People with dementia can still learn new things, he said, and there continues to be the potential for growth and enjoyment of life. I could see that potential in the way that Mom seemed to develop affection for the staff in the nursing home. I read books by Dr. Bill Thomas, Anne Davis Basting, Joanne Koenig Coste, John Zeisel, Dr. Dennis McCullough, and others, and realized for the first time that there was probably much more going on in my mother’s mind than I had thought. With that realization I felt a deep regret and sadness. Maybe I had avoided her true feelings because it would have been too painful for both of us, and I couldn’t do anything about them beyond visiting her. But I found myself wishing that I hadn’t equated her jumbled language and physical deterioration with loss of self and awareness. In 2010 I vowed to talk to my mother as I would anyone else (protecting her, of course, from anything painful). I vowed to try more non-verbal communication, using touch, gesture, and facial expressions.
Now, two years later, if I pay close enough attention to my mother as I talk to her, I almost always see an immediate response—a flick of her eyebrow, a widening of her eyes, a soft snort through her nose when she’s amused. Despite advanced dementia—despite the fact that she cannot walk, speak, or feed herself—she enjoys people, seems to recognize certain favorite staff and visitors, and shares her stunning smile. Judy is still “in there,” and though I have experienced many moments of grief and loss, I still feel her love.
Martha Stettinius is the author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir,”available at major online book retailers. She serves as a volunteer representative for New York State for the National Family Caregivers Association. For more information about the book, please visit www.insidedementia.com.