"I’ve come to appreciate how my mother remains herself and 'here' despite dementia."
So writes Martha Stettinius, author of Inside the Dementia Epidemic: A Daughter’s Memoir, who shares a moving post today, in honor of Thanksgiving. The holidays are a time when many who are caring for aging parents are wondering what, exactly, there is to be grateful in terms of their loved one’s condition. Perhaps these changes, when embraced gently—or even hesitantly—might help reframe the situation enough to make a difference in a caregiver’s or adult child’s life.
Seeing Alzheimer’s Differently: A Hopeful Side to Dementia Care
Alzheimer’s disease is often called “the long good-bye,” and we’re told that people with the disease fade into “shells” of their former selves. But is this true? As caregivers, should we approach our loved ones with dementia as if they are no longer here?
Over the past few years there has been a growing movement in elder care to see Alzheimer’s disease differently, to find what is hopeful and positive in dementia caregiving. Even people with advanced dementia—people who cannot talk, walk, or feed themselves—can continue to connect with others. Beneath the ravages of the disease they are capable of experiencing a full range of emotion. Indeed, if you are a caregiver like me who has had a difficult relationship with your loved one, you may find dementia caregiving transformative.
We each bring our own family histories and personalities to caregiving. In my case, my mother was an active alcoholic when I was a child, and put herself into treatment when I was 14. Over the years, despite the support of counseling and 12-step programs, our relationship remained strained. Only with my mother’s dementia—particularly its middle and late stages—did the rough edges of our relationship soften and heal.
For seven years I have been her primary caregiver. She has vascular dementia from small strokes, and probably Alzheimer’s disease (which is difficult to diagnose with certainty). She’s lived in my home, in assisted living, in a rehab center, a “memory care” facility, and now a nursing home. For years I believed the stereotype that dementia would rob my mother of her true self. In 2007, when she had another small stroke and started to lose her language, I equated language with self, and thought, “Now Mom is truly gone.” I made a lot of assumptions about her capabilities and feelings.
Since then, I’ve come to appreciate how my mother remains herself and “here” despite dementia. Our time together has been not a “long good-bye” but a “long hello.”
Let me share an example of how that happened. One evening in the summer of 2007, I attended a discussion at a local community center about how to support someone who is living with dementia. The next day, when I stopped after work to visit my mother in the rehab center where she was recuperating from a fractured pelvis, I remembered something I had learned: As caregivers we give care, but we rarely encourage our loved ones to give us care and affection in return—or to consider that they might enjoy it.
I decided that day to try something new. 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.”
“Sure, sweetie!” she said.
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.”
Now, five years later, if I pay close 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 living with advanced dementia, my mother enjoys people, seems to recognize certain favorite staff and visitors, and shares her stunning smile. Judy is still “in there,” and although I have experienced many moments of grief and loss, I still feel her love. We are at peace.
Martha Stettinius is the author of the new book Inside the Dementia Epidemic: A Daughter’s Memoir. She serves as a volunteer representative for New York State for the National Family Caregivers Association.