Dementia Care as the “Long Hello”:  An Interview with Martha Stettinius, author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir”

Martha Stettinius, sandwich generation caregiver and author of the critically-acclaimed book “Inside the Dementia Epidemic: A Daughter’s Memoir,” cared for her mother over eight years at home, in assisted living, a rehab center, a “memory care” facility, and a nursing home.  In this interview she explains why she calls her caregiving journey not a “long good-bye,” as Alzheimer’s caregiving is often called, but a “long hello.” An unflinching and hopeful story that is hard to put down, “Inside the Dementia Epidemic” is also a well-researched and vivid overview of the challenges of Alzheimer’s care.

Read our interview with Martha:

Martha Stettinius, sandwich generation caregiver and author of the acclaimed book “Inside the Dementia Epidemic: A Daughter’s Memoir,” cared for her mother over eight years at home, in assisted living, a rehab center, a “memory care” facility, and a nursing home.  In this interview she explains why she calls her caregiving journey not a “long good-bye,” as Alzheimer’s caregiving is often called, but a “long hello.” An unflinching and hopeful story that is hard to put down, “Inside the Dementia Epidemic” is also a well-researched and vivid overview of the challenges of Alzheimer’s care.

An advocate for the needs of family caregivers, Martha serves as a volunteer representative for New York State for the Caregiver Action Network (formerly the National Family Caregivers Association) and as an expert in dementia care for the website eCareDiary. She works as an editor, and earned a master’s in English Education from Teachers College, Columbia University. Martha blogs about person-centered dementia care, has an active Facebook page for family caregivers, and tweets. “Inside the Dementia Epidemic: A Daughter’s Memoir” is available through all major online book retailers as a paperback and e-book.

Q. As a busy sandwich-generation caregiver with your mom, two children, a husband and a job, why did you start writing your book?

In the spring of 2005, I realized that my mother, Judy, who was 72 at the time, could no longer take care of herself in her remote lakeside home where she’d lived alone for 25 years. She could not balance her checkbook, she had stopped cleaning and cooking, and she’d lost a lot of weight. In the winter she was in danger of falling on the steep gravel road that led up the cliff to where she parked her car. I convinced her to move into my home with my family an hour away.

I started writing in stolen moments to deal with the stress of suddenly becoming her caregiver. Like many caregivers, I felt so much guilt and confusion. I wanted to reassure myself that I was making good decisions about my mother’s care, and that, despite our challenging history together, I was being a good daughter. When Mom moved into assisted living in the summer of 2005, I would continue to write sporadically after my visits with her, as a way to clear my head, but I did not commit myself to writing about caregiving on a regular basis for another two years. I decided then that my story might help others, and that it would be worth sharing.

Q. How is your book different from other memoirs about dementia caregiving?

I believe that we are in the midst of a shift in the way that people with dementia are perceived. No longer are they always seen as “empty shells” or “gone.” A few years ago, dementia was commonly described as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. My scenes, however, show my mother as “still Judy,” as still herself despite living with dementia—an unusual perspective in memoirs by adult children caring for their aging parents. Most dementia memoirs still paint the disease as unceasing bleak, but my story shows that there can be many moments of joy and pleasure if the person is treated as a whole human being.

Q. How did you come to believe that your mother was still “in there” despite having dementia?

In my early caregiving years I believed everything I had heard about Alzheimer’s disease—that my mother would turn into a different person, that she would be a “patient,” not a person. I also thought of caregiving as just another responsibility to add to my busy day, and my time with my mother as duty, not pleasure.

I was fortunate to live next door to a woman who leads workshops on person-centered care for an international organization (The Eden Alternative^®). I also attended gerontology conferences where experts spoke about person-centered dementia care, and I read books on the subject. After Mom moved into assisted living, I tried to practice what I learned.

Even if a person cannot speak, as in late dementia, they often express their feelings and needs in other ways—through their eyes, their facial expression, and their body language. When talking to Mom, I found that if I paid close enough attention, I would almost always see a reaction—a raised eyebrow, a twinkle in her eye, a furrowed brow, a puff of a laugh through her nose like a tiny set of bellows. I tried to slow down enough to just “be” with her. Through the final stages of dementia, Mom enjoyed simple pleasures such as sitting with me outdoors or listening to music, holding my hand. Though she passed away at age 80 in December, I will always feel grateful for my time with her.