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Ch. 20: Slowing Down
After dinner on a Tuesday, I walk the three minutes it takes to get from our house to the large building in the center of our intentional community that serves as a meeting space.
Thirty of us are here to listen to a presentation about how to support Rita, our one resident living with dementia. Rita has grown harder to understand, and over the past couple of years most of her neighbors have shied away from her, including me. Karen, a neighbor who leads the presentation, trains family caregivers and paid caregivers nation-wide in compassionate, person-directed care. Her father also had Alzheimer's disease. Beth, another neighbor who has helped Rita's children coordinate her care long-distance, joins her. A third neighbor and presenter, Adele, has spent a great deal of time with Rita as one of what they call her “care partners.” I'm excited to learn all I can from these women and to perhaps share some of my own experiences.
“Instead of trying to change the behavior of someone living with dementia,” Karen suggests, “focus on shifting your own expectations or shifting the environment. Look at what works now, their strengths rather than their limitations, and build on those.”
Adele tells us, “If Rita says something that doesn't seem to make sense, try to find something that works with it. It's like a puzzle. You don't need to have a deep conversation to have a deep connection. Relax with it and don't worry about it.” I think I can try this. I already try to work around my mother's odd choice of words.
“Affirm their reality,” Karen says, “and creatively re-direct them if you need to steer the person away from insisting on something that isn't a good idea.” Beth shares an example: If Rita wants a third serving of ice cream at a community meal because she doesn't remember how much she's already had, Beth doesn't try to reason with her. She tells her “We'll have ice cream at home.” Rita says, “Okay,” and within a few minutes forgets all about it.
Have I bent the truth with Mom? Not too often. Instead I try to explain reality as I see it, repeating myself over and over as she forgets what I've said. I resist lying to her to make things easier, not only because Mom is not yet that difficult to deal with, but also because I'm used to our honest relationship. Part of me worries that if I start bending the truth with Mom she will catch on and no longer trust me.
Karen explains that non-verbal communication is very important to people living with dementia. Talk to them at eye level, she says. I wonder if that's why Mom's physical therapist and nurse at Woodside crouched in front of her wheelchair to talk to her. I always lean over in front of her, never crouch or kneel, because of my arthritic knees.
Convey respect, she says. Use a low-pitched voice. Stay calm.
Karen talks about affirming the reality of people living with dementia. “If they tell you the sky is green, the sky is green. Don't try to change their perspective.” Do I correct my mother when she says something that's clearly incorrect? I'm not sure. I could try harder to validate Mom's ideas and feelings.
“Paraphrase what she's said,” Karen suggests. “Reflect back what you've heard to clarify your understanding of it.”
Adele admits that paraphrasing can be challenging. “When I'm talking with Rita it's complicated. I have to think all the time.”
Yes, I find it hard sometimes to follow Mom's train of thought. I have to concentrate, listen hard. I believe this is one of the main reasons why people avoid talking to those with dementiathe puzzle of their mixed-up language. It helps if you know the person well enough to guess what they are reaching for.
“One of the things I love about spending time with Rita,”Adele says, “is that I can just be myself with her. Sometimes we worry that we have to act a certain way with people or they won't like us. With Rita you don't have to worry about what she thinks of you, because she's not thinking about you!” She laughs.
Karen agrees: “It's freeing.”
“And when I'm with Rita,” Adele adds, “she helps me slow down and notice so many wonderful things around us. She'll stop on our walks and study a leaf, or point to a bird in a tree. I call my hours with her 'the church of Rita.' ”
The next day, a Friday, I visit Mom and carry with me what I learned the night before. I decide to see her 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 pleasure we can find.
Outside, as we sit in the courtyard together, I think of what Karen said last night about helping people with dementia feel useful; often people living with dementia are asked to do very little, to always receive care instead of giving care. I look into my mother's eyes and say, “Mom, I could really use a hug.”
We hold onto each other a long time. I take her hands in mine.
“You have such strong hands,” I say. “They're slender but strong.” We lean toward each other, our faces a foot apart.
“So do you,” she says as she smiles and caresses the freckles on my forearm. For a moment we look into each other's eyes.
“I love you,” she says.
“I love you, too.” Though I've forced myself to say it before, this time I mean it. I feel calm and relaxed, not wary and ready to flee.
Mom says, “The two of us…have come…a long way.”
I smile and squeeze her hand. “Yes, we really have come a long way.” Is she remembering what we used to be like together, how hard we've worked over the years to grow closer to each other? I want to cry when she says this. Does she really remember all those years, or is 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 says. She's still smiling and looking deep into my eyes.
With this, I think she really does know what she's saying. And that's all I've ever wanted“to keep going in that direction.” I want 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.”
It's too late to work out any lingering resentments between us, as Mom can't remember the specifics of our conflicts. So I see no point in hanging on to them. The long-distance affection my mother and I used to share years ago through our letters and phone callsthe affection that, in person, cooled within minutesnow holds steady, for the most part, through our short visits together, warm and full.
A few moments later, though, Mom starts to squirm. “I'd like to…go in. I think I need to go…” and she points to her crotch.
I'm surprised that she can feel the need to go to the bathroom, as lately she hasn't seemed aware of her bodily needs, but I quickly stand up, circle her around and wheel her back inside to the bathroom in her room. Her new roommate, Edie, is not there, but I see a baby doll on the foot of Edie's bed. I point it out to Mom. I'm surprised, amused, a bit creeped out. The tiny doll, swaddled in a receiving blanket, looks like a newborn with its red, wrinkled face.
Standing ready to catch her if she falls, I watch Mom as she lifts herself out of the wheelchair, grabs the walker, and walks stiffly to the toilet. This is the first time I've helped with her Depends, the first time I've helped her do more in the bathroom than enter and leave. I worry that she'll feel embarrassed, but she seems quite comfortable.
When she finishes on the toilet, I grab a dry pair of Depends folded over the handrail next to us on the wall. They look way too big for Mom but I figure they're better than nothing. I remember reading online that if you are changing someone's Depends, do so from behind so they can't see what you are doing and you preserve their dignity. Mom doesn't seem at all
concerned about her dignity. Nevertheless I stand a bit behind her as I lean down to tuck the front half of the Depends through her thighs (“Excuse me, let me just pull this through”), then reach around in front to pull them up to her navel. I fasten the sticky tabs, and Mom pulls up her pants.
“I don't like these much,” she says, and I guess that she means because they're cumbersome, not because she objects to the idea of wearing protective undergarments. The more time I spend with her, the more I can intuit what she means. She zips up her pants,
I point her toward the sink and the soap dispenser, and she slowly washes her hands. I remind myself to be patient. I crank down a paper towel and she meticulously dries her hands. “There's the waste basket,” I say. “Yup, right there.”
I watch closely as she shuffles with her walker to her wheelchair. I suggest that we go for a ride down the hall to the vending machine: I'll buy her a candy bar.
I push her around a corner, down a hallway I doubt she has ever seen.
Mom twists in her seat to look back at me. “I'm nervous. I don't know…what's at the end…of where we are going…and where we came from.”
With her words I inhale a sharp breath, and stop for a moment in the empty hallway. All I can do is touch her shoulder. “Don't worry, Mom. The staff lounge is just down here. We'll get some candy, and we'll come right back.”
INSIDE THE DEMENTIA EPIDEMIC: A DAUGHTER'S MEMOIR For more information about the book: www.insidedementia.com For press inquiries: Martha Stettinius, firstname.lastname@example.org
Table of ContentsPreface - 1
PART ONE Home Care - 5
Judy - 7
The Decision - 12
A New Beginning - 16
Moving In - 25
Problems at Home - 30
Instinct - 42
Our History - 49
Frayed - 55
Family Week - 63
Tough Love - 70
False Relief - 74
PART TWO Assisted Living - 81
Small Indignities - 83
A Fall - 90
Role Reversals - 95
Alone in a Crowd - 99
Not Their Job - 111
Pressure to Move - 118
PART THREE Rehab - 125
Fractured - 127
Chunks of Life - 139
Slowing Down - 151
Old Friends - 157
Transitions - 161
PART FOUR Memory Care - 169
A Toss of the Dice - 171
Moving Day - 176
Settling In - 178
Living Grief - 183
In the Moment - 190
Shock and Awe - 196
Violent Behavior - 203
An Evening to Remember - 207
Reckoning - 210
Sex and Dementia - 213
Sharp and Sweet - 220
Financial Disaster - 224
What If 's - 227
What Remains - 230
Honesty - 237
Another Search for Home - 244
PART FIVE The Nursing Home - 251
Four Kinds of Pain - 253
Rebound - 256
Small Pleasures - 264
Amae - 268
Is It Alzheimer's, or Not? - 274
Dancing Eyes - 278
Afterword - 283
Appendix A: Is There a Test to Diagnose Alzheimer's Disease? 289
Appendix B: Medications Approved to Relieve Symptoms of Alzheimer's Disease 293
Appendix C: Risk Factors and Antidotes for Dementia 295
Appendix D: Is It All in the Family? 303
Appendix E: The Role of Infection 304
Appendix F: Sweet Poison: The Toxic Tide of Sugar 305
Appendix G: The Benefits of “Memory Consultations” and Early Diagnosis 310
Appendix H: Planning for Long-Term Care 313
Appendix I: Long-Term Care in an Intentional Community 318
Appendix J: Confronting the Epidemic at the National Level and Beyond 320
About the Author 353
What People are Saying About This
Readers will find much to guide them in this chronicle of a daughter's journey to help her mother through the several stages of this dreadful disease. A moving and insightful work."—Claire Berman (author of Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive)
A special book that combines a very personal story about how a daughter is affected by her mother's illness with a broader perspective on Alzheimer's disease and other dementias. A guide for everyone hit by Alzheimer's and dementia that reads very well.—Marc Wortmann (Executive Director, Alzheimer's Disease International)
For seven years I have coped with my mother's dementia. I have cared for her at home, in assisted living, a rehab center, a specialized “memory care” facility, and the dreaded nursing home.
What do we face next?
In my question lies hope. Hope not just for my mother, Judy, but for me, and for you.
The journey I have taken with my mother has alerted me to the latest scientific findings about dementia. Although the facts are frightening, they are our only hope if we wish to emerge with our minds intact from what is now a fast-growing epidemic.
The shocking wake-up call is that this epidemic will also overtake those of us in middle age, unless we can somehow prevent or treat it.
One in eight people over age sixty-five in the United States has Alzheimer's disease, and nearly fifty percent over age eighty-five. In 2012, an estimated 5.4 million people in the United States will have Alzheimer's disease. As people continue to live longer, and the baby boomers grow older, the number of people with dementia will explode. The 35.6 million with dementia worldwide in 2010
is expected to double by 2030 to 65.7 million, and then nearly double again by 2050 to 115.4 million.
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 United States in 2011, over 15 million family caregivers provided 17.4 billion hours of unpaid care to family members and friends with Alzheimer's disease and other dementias. This unpaid care was estimated 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. A third of family caregivers report feeling depressed, and sixty percent feel extreme stress.
Dementia is not only Alzheimer's (the most common, at sixty to eighty percent), but a Pandora's Box diagnosis that includes over one hundred conditions. Familial Alzheimer'salso called “early-onset” dementiaoccurs before the age of sixty, and represents 5-7 percent of Alzheimer's cases. “Mixed dementia”Alzheimer's plus another type of dementiahas been shown in autopsies to occur in up to 45 percent of people with dementia. Vascular dementia alone, of which there are several forms, accounts for up to 20 percent of dementias.
This book is not a lament, however; it is a guide, and, I hope, a means to soften the blow upon all of us. In the course of my own experience, I discovered what could have been done earlier to help my mother, and what can be done now to help us all: Startling scientific findings show that certain changes in diet and exerciseeven changes in eye care and sleep patternsmay decrease the risk of developing these diseases. If we are to survive the “silver tsunami,” which will overwhelm half the population in the not-too-distant future, we must join the worldwide movement demanding more dementia research. Alzheimer's disease is the fifth-leading cause of death in the United States for those age 65 and older, but the only one in the top ten without a means of prevention, a way to slow its progression for more than a few years, or a cure.
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. William Thies, Ph.D., the Alzheimer's Association's Chief Medical and Scientific Officer, says that “the overwhelming number of people whose lives will be altered by Alzheimer's disease and dementia, combined with the staggering burden on families and nations, make Alzheimer's the defining disease of this generation.”
Remember those words as you read this book:
“The defining disease of this generation.”
The good news is that it is not too late to save yourself, and to learn how to best support your relatives if they already suffer.
By sharing my journey of discovery, as well as the resources I acquired during the past seven years, I hope to help you cope with your afflicted family members and friends. What I've learned also might help you save your own sanity.
Over the past few years I've inhaled all of the memoirs I could find about dementia caregiving, but most of these memoirs 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 of these caregivers have written scenes in multiple care settings, as I have; few describe how they found adequate assistance; and few offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful goodbyeindeed, as the complete erasure of the person who once was. What I have experienced and felt with Mom is different, and I want to share our story.
Related essays on dementia research, dementia risk factors, and planning for long-term care can be found in the appendices. I have navigated the maze of choices inherent in dementia care, and I can now offer my journey as a guide. With enough support from others, caregiving need not mean a life of constant exhaustion and loss. These years can be both manageable and meaningfulnot a “long good-bye” as it's often described, but a “long hello.”
Most Helpful Customer Reviews
Unlike many memoirs written by a son or daughter in tribute to their wonderful, sweet and talented parent destroyed by Alzheimer's, Martha Stettinus's mother was opinionated, difficult, edgy and at times estranged from her daughter. In her book Inside the Dementia Epidemic, Stettinus details with insightful, honest and at times painful detail her long journey with her mother with dementia. This book is especially transparent allowing the reader to identify with attributes they may see in or experience themselves as family caregivers: guilt when they feel they're not doing enough; denial that their parent is as impaired as others perceive them; anger at needing to intervene setting aside their job, family etc. for someone else; longing for some personal escape from the never ending responsibility of parental care; isolation as daunting decisions rest on their shoulders alone and fear of a loved one running out of money and often second guessing difficult decisions. I can relate personally to some of the weighty issues Stettinus's dealt with especially denial, financial concerns and the impossible to describe feelings of doubt that, as the only living "child," you are doing the "right thing" (whatever THAT is) for your parent, one precarious decision after another. As an author, reviewer, therapist and Certified Dementia Caregiver/Practitioner, I highly recommend The Dementia Epidemic not only for its personal depth but also for identifying learned strategies for engaging with someone with illogical thinking and memory loss such as Alzheimer's
Having cared for my own mother who had Alzheimers, I really could identify with the author's initial denial that her parent had problems. The financial, legal, medical & emotional issues of care giving were portrayed very well.There are so many, many emotions involved and above all else guilt before, during and after the departed parent's illness. This book brought back many good and bad memiries of my mother's illness. Above all else the author has made me more comfortable with my experience though I, as she, wished I had known more sooner! If I had this book as a resource it would have made things much easier.
Very insightful. Recommended reading for anyone who may eventually care for someone with dementia related issues. Everyone's situation may be different, but this gives caregivers good information on what they will encounter and emotions they will feel. Well written.
Making the time to read Inside the Dementia Epidemic, A Daughter's Memoir by Martha Stettinius was one of the best gifts I have given myself. Martha shares in spellbinding fashion how her estrangement turned to deep love as her mother Judy moved through the stages of Alzheimer's disease. I found myself cheering for Martha and Judy and felt every hurt, heartache, joy and triumph in a profound way. As the daughter of a dementia sufferer, I knew I'd learn a great deal from reading a journey different from my own. Yet this book exceeded my every expectation by providing at least one new lesson in every chapter. One of the most powerful lessons for anyone dealing with a loved one with dementia is found in the final paragraph, "Each day brings loss; each day, recovery. A long journey, one day at a time." This is an amazing story of their seven year dementia journey, yet there is even more to come for readers. The ten appendices that Martha includes can only be described as pure nuggets of gold, which for me represents an invaluable Alzheimer's disease manual. If you know anyone with dementia and have been looking for an incredible love story that includes caregiver advice based on extensive research, your search will be over as soon as you order this book. Loretta Anne Woodward Veney, author of Being My Mom's Mom, a journey through dementia from a daughter's perspective
Reviewed by Alice DiNizo for Readers' Favorite Martha Stettinius writes so very well in this memoir of how she, her family and caregivers dealt with her mother Judy's dementia as it moved from mild to progressively worsening stages. The author is very forthright in telling readers that she wished she had paid more attention to what was going on in the early years when her mother was developing dementia. Judy lived by herself for over twenty-five years in her family's remote lakeside cottage in rural New York. And even though Judy was bright and had been a special education teacher, her solitary life was dangerous as her brain needed stimulation. She needed to learn new skills and participate in a variety of social and cultural events but since she lived alone, she did not. Her daughter, author Martha Stattinius, writes at the beginning of "Inside the Dementia Epidemic" that dementia, often called the "silver tsunami", is not just Alzheimer's but is also 100 different conditions. It is the fifth leading cause of death for those over 65 and of the leading 10 causes of death, it is the only one without means of prevention. "Inside the Dementia Epidemic" is an honest and thorough look at diagnosing and then dealing with a family member or close friend who is in one of the seven stages of Alzheimer's. Stettinius gives suggestion after suggestion on how to deal with someone afflicted with dementia. She tells of her own experiences and shares information about how to deal with the high financial costs of care-giving. Martha Stettinius also shares her mistakes in moving her mother from one nursing facility to another and what the reader should look for in a care facility. Above all, she stresses that in dealing with a dementia patient their jumbled words should never be equated with loss of self awareness. The appendixes, bibliography, and index at the book's end are thorough and excellent, a treasure trove of information. As baby boomers ago, dementia diagnoses will increase, so "Inside the Dementia Epidemic" is a "must read" book for readers everywhere.
Reading this book was like looking into a mirror of my own life. I recently read this book and from the very first page I was captivated by Ms. Stettinius' writing. Her insight, clarity, honesty , knowledge and her ability to put so many emotions into words is amazing. Not a day goes by that I don't think about what I read inthis book. There is even an occasional paragraph of humor that is so important when living with a care partner facing this terrible disease. Her continunity and clarity are easy to follow and it's not clinically based. It is a book that is easy to read and understand. This book has helped me with many of the decisions and choices I have had to make recently regarding the care of my Mother. Thank you for such an informative book. From the preface page with the staggering statistics of this disease it held my interest and compassion for your and your family.
I appreciate Ms. Stettinius's honesty about the feelings she’s experienced around the care of her mother. She’s also very specific about the conversations and interactions she’s had with various staff in the facilities where her mother has lived, and I think that will be very useful for others who find themselves in a similar situation. It has been an eye-opener for me to hear the family member's point of view. I recommend this book to anyone who has an interest in the lives and options of elders and their families.
Unlike many memoirs written by a son or daughter in tribute to their wonderful, sweet and talented parent destroyed by Alzheimer’s, Martha Stettinus’s mother was opinionated, difficult, edgy and at times estranged from her daughter. In her book Inside the Dementia Epidemic, Stettinus details with insightful, honest and at times painful detail her long journey with her mother with dementia. This book is especially transparent allowing the reader to identify with attributes they may see in or experience themselves as family caregivers: guilt when they feel they’re not doing enough; denial that their parent is as impaired as others perceive them; anger at needing to intervene setting aside their job, family etc. for someone else; longing for some personal escape from the never ending responsibility of parental care; isolation as daunting decisions rest on their shoulders alone and fear of her mother running out of money and often second guessing difficult decisions. I can relate personally to some of the weighty issues Stettinus’s dealt with especially denial, financial concerns and especially the impossible to describe feelings of powerlessness and doubt that as the only living “child” you are doing right by your parent, one precarious decision after another