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Inside the Dementia Epidemic: A Daughter’s Memoir
Sample Interview Questions
1. Why did you start writing Inside the Dementia Epidemic: A Daughter’s Memoir? 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. 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 with a job, two children in elementary school, and Mom to watch out for, I had no energy for that at the time, and little interest.
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. I started to get up at 5:00 to write before work, and I scribbled in a notebook on my bus ride to the office. On the weekends I’d tap away on my laptop while my husband—a very patient and gentle man—fixed dinner and tended the kids. In the fall of 2007 I asked my boss to let me work from home so I’d have more time to write
Shifting from daughter to caregiver came as such a shock to me. I’m in my late forties now, and my generation is used to having books like What to Expect When You’re Expecting for every major life transition. When I found myself unprepared for caregiving at age 40, I thought to myself, “How is it that I never heard about this before? Where are all the books by adult children caring for an aging parent?” Of course, the topic is not something you seek out, necessarily, unless you’re in the middle of it yourself and need the support. Most of us avoid thinking about the day our parents will need our help, for as long as we can.
2. Why did you continue to write this book over seven years? Since Mom moved into assisted living, she has been 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. (At 80. she’s lived in the nursing home for over two years. Although she cannot speak or walk, she still communicates in her own way, enjoys people, and freely shares her beautiful smile.) Through these years I didn’t write all of the time, but whenever I have 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. (This was before I spent much time online outside of work; I never considered writing a blog or joining an online caregiver chat room.)
When I started to write in earnest in 2007, I realized that the challenges that family caregivers face often occur behind the scenes, invisible to our wider family, our friends, and our employers. Our voices have been silenced by the weight of our daily responsibilities. How many of us have time to write a book? Not many. I felt a responsibility to serve as a voice for other caregivers, and 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 have experienced and felt with my mother is different, and I wanted to share our story. I hope that Inside the Dementia Epidemic will play a role in the movement to change the way that people with dementia are viewed and cared for.
3. In what other ways is your memoir different from other memoirs by adult children caring for an aging parent? Inside the Dementia Epidemic: A Daughter’s Memoir has been called “unprecedented,” and I believe that is because it is unusual in three ways. First, in the past few years there has been an explosion of “caregiver lit,” but many of the memoirs out there by adult children caring for a parent with dementia either treat the elder as hapless and amusing, which I find disrespectful, or they focus on the extreme stress and craziness of caregiving at home with little support. Few describe how they found adequate assistance, and few offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. My book is honest, but uplifting. I show that, enough support from others, dementia caregiving need not mean a life of constant exhaustion. Your caregiving years can be both manageable and meaningful—not a “long goodbye,” as it’s often called, but a “long hello.”
Second, most memoirs by adult children caring for an aging parent include scenes in perhaps one or two settings (at home and assisted living, for example, or in assisted living and a nursing home) but not in five distinct care environments as I have. I organize my book into sections based on where my mother has lived these past seven years: home home, assisted living, rehab, “memory care,” and a nursing home dementia ward. Each setting had its own culture, its own approach to caring for people with dementia. In the story, each place becomes a character in its own right.
I feel very strongly that “aging in place” at home is often not the best option for people with dementia and their caregivers, particularly if they don’t have enough support. On the other hand, conventional assisted living facilities and nursing homes are less than ideal as well. I found some situations—such as the memory care facility—to be much better for my mother than others. My book also includes descriptions of alternatives to conventional care such as nursing homes that follow The Eden Alternative®, and other new programs, such as The Green House Project®, where small homes with 6 to 10 elders provide nursing-home level care in a more intimate and loving environment. (Unfortunately these programs are not available in our area at this time, but they may be soon.) My greatest hope for this book is that it will play a part in the emerging shift in what’s called the “culture of elder care,” that my “inside” look at dementia care will help convince people that we need to improve the quality of care that is available and affordable, and to offer more community support for caregivers.
Third, as a bonus for readers who are interested, I wrote essays for the appendices that share information about dementia that I wished I had known about years ago, such as how to get a diagnosis of Alzheimer’s disease and what medications are approved to relieve the symptoms of Alzheimer’s disease, to lesser-known risk factors for dementia and possible preventive measures.
4. Most caregiving memoirs about dementia do not include the amount of factual information you include in your appendices. Do you think that readers who want to feel immersed in the immediacy of personal story will also be inclined to read these essays? I do think that many readers prefer a straight memoir with no sidebars or appendices that offer facts or other educational information. I, too, like to get lost in a story without distractions. In earlier versions of the book I tried to weave this information about dementia into my personal story, but my volunteer readers told me that the factual information interrupted their memoir reading experience. For the final version of the book, I thought it was important to retain this information in a separate section for readers who want it. These are all facts that I wish I had known years earlier. It’s up-to-date information about dementia that can be difficult to find all in one book or on one website, facts that we all need to know as we age.
5. Why do you refer to dementia as an “epidemic”? In the fall of 2011, one of my editors recommended the book’s current title, and suggested that I add something to my personal story that would make it clear that dementia is an epidemic. Dementia is not contagious, of course, but as people continue to live longer, and the baby boomers grow older, the number of people with dementia will explode. Let me share some statistics with you. One in 8 people over the age of 65 in the United States has Alzheimer’s disease, and nearly 50% over age 85. An estimated 5.4 million people in the United States have Alzheimer’s disease. By 2050, up to 16 million in the U.S. will have the disease. The 35.6 million with dementia worldwide is expected to double by 2030 to 65.7 million, and then nearly double again by 2050 to 115.4 million. The shocking wake-up call is that this epidemic will overtake those of us in middle age, unless we can somehow prevent or treat it.
Even if we do not get the disease, or if we get it late in life, we are likely to become a family caregiver for someone with dementia. In the U.S., over 15 million family caregivers provide 17.4 billion hours of unpaid care to family members and friends with Alzheimer’s disease and other dementias. This unpaid care was estimated in 2012 to be worth $210.5 billion, more than the total for federal and state Medicare and Medicaid spending for Alzheimer’s care. Family caregivers often sacrifice their own health and finances to provide that care.
Even if by luck or a preventive lifestyle we don’t succumb to dementia, each of us will pay for its treatment. In the United States in 2012, Medicare, Medicaid and out-of-pocket expenditures for Alzheimer’s and other dementia care total $200 billion. By 2050, the projected cost will reach $1.1 trillion.
When my editor suggested that I focus more on dementia as an epidemic, I resisted at first. Although I have a master’s degree in English and am quite comfortable with research, I didn’t think that I was the best person to write about those topics because I’m not an “expert” like a doctor or a social worker. But over the past year I have enjoyed digging into articles online about trends in dementia research, theories about ways we might be able to avoid developing dementia, and the necessity of dramatically increasing federal funding for dementia research. My research has been thorough, my book includes my source notes, and several experts on dementia reviewed the book before publication.
I hope that my book will play a part in increasing awareness of Alzheimer’s disease and other dementias as a growing epidemic, and serve as a call to action for better dementia care, more funding for dementia research, and more community support for family caregivers.
5. You write about your challenging relationship with your mother, who was an active alcoholic when you were growing up. Why did you feel it was important to write about this as part of your caregiving story? My mother put herself into treatment for alcoholism when I was 14—a brave thing to do—and has stayed sober ever since, but until the middle stages of Alzheimer’s disease, when she seemed to relax into the dementia, she remained a complicated and sometimes difficult personality. Over the years we’ve both gone to 12-step meetings and counseling, and tried to grow closer despite many tense visits cut short. When she moved in with me we had been living mostly separate lives, visiting infrequently, even though we lived only an hour apart. Caregiving brought up many of the old dynamics between us, compounding the confusion and stress of dementia. Over time, though, I found myself growing closer to my mother; through caregiving, old wounds healed, and I learned to appreciate her more. These years have been a tremendous period of growth for me, as a caregiver and as a daughter. I have learned to enjoy my time with my mother, and to nurture her spirit through the very last stages of dementia. I believe she has also felt a great deal of peace and tenderness through our time together.
6. What are some of the main themes of your book? Inside the Dementia Epidemic: A Daughter’s Memoir is multi-dimensional, I believe, with many layers and themes. An editor once told me, for example, that my book could be either about my relationship with my mother over the years, or about caregiving, but not both. I chose to keep both themes, as they are inextricably related. At its essence, it is a story of forgiveness and healing between a mother and daughter. I learn to see my mother through new eyes, not as a daughter who judged her mother harshly over the years, but as a friend and companion. I also learn to see my mother not as dementia “patient”—as a shell of her former self—but as a person who, beneath the ravages of the disease, is still here—still able to communicate despite her loss of language, still smiling and crinkling her eyes in amusement, still able to enjoy being with others and to appreciate the simple pleasures of life.
My book can also been seen as a chronicle of my struggle from day one of my caregiving journey to protect myself from disappearing into the unrelenting demands of caregiving. I learn over time how to balance my life as a “sandwich generation” mom with a failing parent, young children, and a job. I learn that I can’t be a superwoman, to let go of the guilt that we so often feel as caregivers whether we care for our parent in our home or supervise their care in a facility.
Inside the Dementia Epidemic also serves as an inside look at the day-to-day realities of caring for a person with dementia, and is an exposé of sorts of the elder care industry from a family member’s perspective. I offer detailed scenes that make the reader feel as if they are living the journey with me, talking with my mother at my dining room table, or, years later, wheeling her down the hall of her nursing home.
Other subjects or themes that weave throughout the book include:
denial (on the part of both the caregiver and the person with dementia that things are as bad as they are),
learning to communicate in new ways (without relying on logic or memory),
financial concerns; costs of, and planning for, long-term care,
what’s called “ambiguous loss” or “living grief” (when you mourn someone who is still alive),
recognizing the symptoms and stages of Alzheimer’s disease,
issues common in early dementia, such as when to take away the car keys or to take over the checkbook,
issues common in the middle stages of dementia, such as paranoia, aggression, or violent behavior, and how to avoid them,
issues common in late dementia, such as incontinence, language loss, and spoon-feeding,
end-of-life discussions and planning,
working as a member of the “care plan” team with facility staff,
finding support as a caregiver through such things as caregiver support groups, counseling, and respite,
work/life balance issues on the job (the importance of employers allowing employees to leave to attend to caregiving emergencies),
finding and evaluating appropriate care and activities for different stages of dementia,
benefits and drawbacks of different kinds of care (at home, in assisted living, in “memory care” facilities, in nursing homes, and in new alternative kinds of care such as the Green House Project),
legal issues (Durable Power of Attorney, Health Care Proxy, Living Will, Medicaid planning, guardianship, etc.),
challenges when people with dementia are hospitalized or need rehab,
transitioning from one facility to another, or from the hospital to rehab,
caregiving stresses and lessons learns about day-to-day responsibilities such as doctor’s appointments, food, prescriptions, bathing, dressing, toileting, transportation, socialization, safety, and entertainment,
sexuality and dementia,
advocating for your parent’s safety and well-being in discussions about medical decisions and care planning with doctors and facility staff,
the importance of encouraging people to maintain their friendships with your parent, and of creating opportunities for new friendships through the last stages of dementia—of recognizing that people with dementia often retain the ability to recognize and appreciate intimacy and affection, and,
lessons learned from caregiving, such as appreciation for simple pleasures, patience, and resilience.
7. If there was one suggestion you could make to an adult son or daughter who is just beginning to take care of their adult parent, what would it be? Don’t try to make these caregiving decisions entirely on your own. For one thing, early on your parent may still be able to help make these decisions, to keep at least some of their autonomy, even if their memory or judgment is starting to go. Listen to their needs and preferences. When Mom moved in with me I was so used to thinking of myself and my family that I never stopped to think about all that she had lost in her move, or about how I would feel in her place.
Even if you’re worried about your parent’s financial situation, as I have been, consider hiring a geriatric care manager to meet your parent and help you evaluate the situation. Whether your parent wants to live in their own home, lives with you, or is willing to move to an elder care facility, a geriatric care manager can make recommendations, and you won’t feel so very alone in your decisions. If, unlike me, you have siblings, a geriatric care manager can help you negotiate the family tension that comes with such major decisions. And if you retain a geriatric care manager through the years, they will be able to advise you at each step of your caregiving journey. By not hiring a geriatric care manager, I saved some of the money in my mother’s checking account, but that is one thing I would do differently if I were to do it all again. (And that saved money is long gone, anyway, as she had to “spend down” those savings to qualify for Medicaid-funded nursing home care.)
For more information about the book: www.insidedementia.com www.facebook.com/InsideDementia Twitter: #insidedementia
For media inquiries: Martha Stettinius, firstname.lastname@example.org