We interview Martha Stettinius, author of Inside the Dementia Epidemic: A Daughter’s Memoir, which has been widely praised and also was awarded an honorable mention by Writer’s Digest in the life-stories category. In our interview, Stettinius reflects on caring for her mother and how she coped with the help of support groups and the use of writing as catharsis. She concludes the interview with a poignant reminder to family caregivers that they’re not alone.
Inside the Dementia Epidemic: A Daughter’s Memoir is an exceptional and unique addition to the growing body of caregiver literature. Stettinius candidly portrays the demanding and life changing experience of not only caring for a parent with dementia, but simultaneously raising children, maintaining a marriage and attending to a career. She also seamlessly interweaves the fascinating back-story of the close but sometimes tumultuous relationship with her mother as it progressed since Stettinius’ childhood.
The narrative is structured in 5 parts, with one part dedicated to each type of care that her mother required (home care, assisted living, rehab, memory care, and nursing home). Despite the difficult subject matter, the tone is positive and life affirming without being overly sentimental. The book not only has the potential to teach and inspire family caregivers, it also paints a vivid portrait of life as a caregiver for those of us who haven’t been through the experience first hand, but who are interested in understanding, as best as possible, what it’s like.
[Martha Stettinius:“In this scene my mother, Judy, lives in a memory care facility and I’ve brought her to my home to visit.”]
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Over the past year my mother’s ability to talk has lessened to the point where she’s silent most of the time. When she does try to speak, she’ll say one or two words at a time, so muddled and soft I often can’t understand them.
Today I’m surprised when Mom speaks more clearly than she has for months. Her sentences run short but cogent and crisp. We sit together in the woods beside my neighborhood [a co-housing community] and listen to six of my neighbors play their bongos in a drum circle. It’s a warm Sunday afternoon in mid-November. Mom sits on a folding metal chair, I on the leafy dirt beside her. For a half hour we just gaze at the sunlight filtering through the branches. We stroke each other’s thumbs. When I bounce my thumb to the rhythm of the bongos Mom laughs and points to my hand. She lifts her chin and turns her face to watch the people in the circle, smiles, and closes her eyes. When she turns back to me I say, “Do you like this, Mom?”
She says, “Yes, I do!”
Later she turns her big, bright eyes to me, taps the fingers of her right hand to her chest, and says, “I have…feelings.”
“You’re happy?” I ask.
“Yes.” She struggles a moment, then adds “Very!”
This is my first visit with her in a month as I’ve been sick with the flu. When I’m away for so long I don’t know what I’ll find. I think of what people always ask me when I tell them my mother has dementia: “Does she still know you?” I dread that my mother might look through me with no recognition.
I needn’t have worried. In the living room at Elm Haven, she knew me the instant she saw me. She reached for me from her chair, throwing her arms up as if she was tossing a beach ball. “Hey!” she said. A year or two ago she might have said “Hey! There she is!” or “Hey, there’s my girl!” but today it was just “Hey!” and the biggest smile in the world.
Here in the woods today I can feel my mother vibrant beside me. In this moment we fly back through the decades, past the harsh words we shared as mother and daughter, the slammed doors and tears and phone calls cut short—it’s all gone. Nothing remains but the touch of her fingers to her chest and her smiling eyes.
Q: What lessons have you learned from your time caring for your mother that will stay with you through your own old age?
A: Despite having written a book that’s an inside look at old age and long-term care, I don’t really believe that I will need that kind of care myself. At 48 I am in complete denial. But I can tell you that, after caring for my mother, Judy, for 8 years, I do know one thing for certain. I know that I want to age not “in place,” as is so popular right now, but “in community.”
I have lived in an intentional community in Upstate New York for 15 years with my husband and two children. Aging in community can mean living in an intentional community such as in cohousing, or within a network of neighbors who volunteer to help each other, such as the Beacon Hill Village in Boston. It means finding or creating the places and relationships that can sustain us as we age (and if we need long-term care).
I believe that if we age in community we are more likely to remain healthier longer. I also believe that if my mother had not lived alone in an isolated cottage on a lake until she was 72 (then in my home and various dementia care facilities until her death at age 80 in late 2012)—if she had lived in community—her quality of life would have been radically different. Living “in community” doesn’t guarantee that you’ll never need a nursing home, but you’re more likely to be able to live in your home longer, and to rely less heavily on your spouse, partner, or children.
I also learned from my time with Mom that caregiving is not a one-person job. If at some point my husband or I need help with long-term care at home (shopping, cooking, bathing, dressing, etc.) we will need to find support. I would want to have what’s called a “care circle” in place for myself and my husband. It’s important to “share the care” by encouraging other family members, friends and neighbors to help out. There’s a terrific website you can use to easily set up a private web page for people to sign up for tasks (grocery shopping, driving, bringing a meal, etc.)—www.lotsahelpinghands.com. There’s also a great book called “Share the Care.”
Q: How helpful was it to attend a support group during this time?
A: I feel very fortunate that I stumbled upon a dementia caregiver support group at my county’s Office for the Aging. If my neighbor hadn’t told me about it, I might never have known to check it out. Other people may prefer online chat groups for caregivers (such as those on the Caregiver Action Network). I attended my dementia caregiver support group for 8 years, until a month after my mother’s death in December. There I found people who understood how I was feeling, and who shared many tips to help guide me through my caregiving journey.
Q: How would you react if you were one day diagnosed with Alzheimer’s or another dementia? What kind of preparations would you make? And does the prospect frighten you?
A: Despite my mother’s dementia we enjoyed many sweet, peaceful moments together—right up until her last days. We found ways to communicate without words, and our visits helped heal what had been a challenging relationship. If I were to develop Alzheimer’s disease or another dementia I’d like to think that I would anticipate the same kind of loving moments with my own family and friends, and feel unafraid. But truthfully I am as frightened as the next person by the prospect of dementia. When I can’t remember a word I panic a bit. I worry about what I eat, whether I get enough exercise (some researchers say that regular exercise is our best defense against dementia), and whether my blood sugar levels are normal (I’m insulin resistant and pre-diabetic, and those are risk factors). I use a CPAP machine at night to treat my sleep apnea, another (lesser-known) risk factor. Unlike Mom, I don’t smoke. I feel grateful that I’m aware of the major risk factors. Mom did not have that advantage.
If I were to be diagnosed with dementia, I would talk to my family about what kind of help I’d prefer. I’d welcome a “circle of care” with neighbors and friends visiting and helping out, and I’d hope that they would continue to visit until the final stages of dementia and not be afraid. Because of the stigma of dementia, friends and neighbors often fall away after a diagnosis. (To read about a group of women who vowed to continue to visit their friend with dementia for the rest of her life, read the NY Times’ New Old Age blog post For the Love of Sunny.) I’d also try to find a support group through the Alzheimer’s Association for people with early dementia. I would talk to my family about my end-of-life preferences and complete all the paperwork (Living Will, Durable Power of Attorney, Health Care Proxy). I’d tell my husband, or whoever is caring for me, that I do not want them to jeopardize their own health to care for me at home forever, that I want them to take care of themselves first, either by hiring help at home or placing me in a facility when the daily tasks of caregiving become too exhausting. (Hopefully, to help pay for this care, I will have secured private long-term care insurance before I’m diagnosed with dementia and become ineligible. Or there will be a public long-term care insurance program available similar to the defunct CLASS Act of 2010.) I would meet with a geriatric care manager to talk about my options for care, and with a financial advisor about Medicaid planning. I’d encourage my family to find a support group for themselves, too. Then I’d take them all out to lunch.
Q: When did you decide to write a book about your experiences as a caregiver, and what motivated you?
A: When Mom moved in with us in early 2005, I started writing in stolen moments to deal with the stress of suddenly becoming her caregiver. That fall I took a class at the university where I worked called “The Art of the Personal Essay,” and I found myself writing almost exclusively about taking care of Mom. 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. The professor encouraged me to turn my essays into a book, but I had no energy for that at the time, and little interest.
After Mom moved into assisted living I decided that my story might help others, and that it would be worth sharing. She was hospitalized several times, did a stint in a rehab center for a fractured pelvis, moved to a memory care facility when she became incontinent, and then a nursing home when she needed to be spoon-fed. Through those years I didn’t write all of the time, but whenever I found myself confused and overwhelmed in my role as caregiver by these transitions, and by the decisions I had to make, I found solace in two things: my caregiver support group and my writing. I hoped that a book would assure others that they were not alone in their feelings. What started as “therapy writing” for myself grew into something bigger—a service to others.
But service to others probably would not have been enough motivation to keep me writing about the same topic for so long. Since 2009, what has kept me motivated is the feeling that my perspective of dementia—my scenes of my mother as “still Judy,” still herself despite living with advanced dementia—is underrepresented in caregiver lit. 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 almost always described as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I experienced and felt with my mother was different, and I wanted to share our story.
Q: What was the hardest part about writing this book and telling your story?
A: The hardest part was reliving the scenes as I wrote, feeling again and again the emotions that often accompany caregiving—reluctance, guilt, anger, confusion, fear, sadness, and grief. I wrote about happier feelings, too, of course, but it’s easier to write about those—the pleasure I felt, for example, when I visited Mom and we were able to communicate with each other by holding hands or laughing.
I wrote most of the scenes shortly after they happened, then took several years to go back and dig deeper. I found it easier to write the action and setting of a scene than to write about my feelings, what motivated me to act, and what assumptions I was making. At one point in the revision process I set the manuscript aside for a year. That was a good thing, because when I picked it up again I had more insight into myself as a person, daughter, and caregiver.
Q: If you could send one message to readers who are caring for a loved one with dementia, what would it be?
A: Don’t attempt to be a superwoman or superman and do it all alone. Try to find the kind of support I talked about earlier. I found it really helpful to call my local Alzheimer’s Association and talk to a counselor. When Mom lived with me I also found free caregiver counseling through my county’s office of Family and Children’s Services. Your local Office for the Aging (locatable at www.eldercare.gov) should be able to tell you what is available in your area. Respite services (volunteers who come into your home for a few hours so you can take a break) often have long waiting lists, but consider asking a friend or family member to take the lead and organize a “care circle.” Without the burden of constant exhaustion, you may be more likely to appreciate the ways in which your loved one with dementia is still “here,” still capable of giving and receiving affection. With enough help, both of you can enjoy the simple pleasures of life.
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