Explore "Surviving Dementia Care."
Message to the Potential Reader
If you’re reading this, you’re probably at least thinking about reading my book, Surviving Dementia Care. And if you’re presently caring for a loved one with dementia, you’ve no time to spare on a book that’s of no use. So let me explain some things about this particular book that might help you decide.
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I began writing for personal reasons: both my parents were diagnosed with different forms of dementia. I was teaching and researching at Western University and writing scholarly articles on information and librarianship. With this massive change in my life, I decided to alter course and write something helpful about dementia. And as my thoughts were coming together in the form of a book, I made two decisions.
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First, I chose to focus on family caregivers. There’s lots of information about dementia itself, and its effect on the person who is actually living with it. But I was more concerned with those who are supporting someone with dementia. What’s more, I wanted to write specifically for family members: people who are caring for someone, not because it’s their paid work, but because there’s a bond of love and responsibility. How do you sustain that bond with someone who is undergoing such profound change?
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Second, I chose to avoid a personal memoir and instead write something that might be helpful to different people in different situations. Dementia takes many forms and presents many challenges in many combinations. My story is not every story, and I wanted to help as many people as possible.
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To achieve this, I chose to bring out my inner librarian and to organize the caregiving experience. I’ve created a general scheme of dementia care in which I break down the challenges into four major approaches, which I call “modes”: describing, understanding, advocating, and imagining. These modes are grounded in a series of interviews with family caregivers, together with published memoirs, and with extensive research into the various aspects of dementia care, including the diagnosis, conversational repair, choosing an assisted care facility, and achieving emotional connection through music and ritual. And of course, I draw implicitly on my own experience, not just with my parents, but with the many people I met and spoke to as a violinist conducting music sessions in dementia care facilities and accompanying an inter-generational choir.
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Finally, because I’m a literary scholar at heart, the book is peppered with literary examples ranging from Dante to Star Trek. I can’t help myself: literature is in my blood.
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Upon reading this book, you may disagree with me. In fact, I hope you take issue with at least with parts of it. As a teacher, I’ve found that some of the best moments in a classroom are generated through respectful but energetic disagreement. It’s often a sign that independent thought has come to life, and your independent thought might well produce something better, or at least more appropriate for your situation.
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Whether or not you go forward and read the book, take my best wishes with you on your journey. Family dementia care is painful and difficult: there’s no getting around that. But you’re not alone; there is help out there, and more all the time as our society wakes up to a better and more compassionate understanding of dementia.
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And some loving bonds are worth the journey.
Preface: Turning Over the Placemat
Acknowledgments
Note on Participants
Part One: Introduction
Chapter 1: Introducing Dementia Care
Chapter 2: Introducing Modes
Part Two: Getting the Facts: The Describing Mode
Chapter 3: Labelling Dementia
Chapter 4: Classifying Dementia
Part Three: Following the Thread: The Understanding Mode
Chapter 5: Conversation
Chapter 6: Categories
Part Four: Taking a Stand: The Advocating Mode
Chapter 7: Facing Out
Chapter 8: Looking In
Part Five: Taking a Breath: The Imagining Mode
Chapter 9: Creative Surges
Chapter 10: Pleasure
Part Six: Closing the Distance
Chapter 11: A Sceptical Pause
Chapter 12: An Optimistic Conclusion
Epilogue: Learning from an Organist
Appendix 1
Appendix 2
Table of Contents
Selected Excerpts
On Wearing Different Hats
When you’re caring for a loved one with dementia, you have to approach each challenge by different roads and enter by different doors. Sometimes the loved one is relatively normal, and you can play the role you’ve always played. At other times, you’re a nurse; sometimes, unfortunately, a prison guard; sometimes a walking encyclopedia of everything the person has forgotten: husband, wife, private secretary, son, daughter, receptionist, chauffer, fashion consultant, cook – the list goes on. And each role requires you to approach it in a certain way, in a certain mood. Equally important, each role judges some information to be relevant and other information little or no help at all. If you’ve ever wondered why a neighbor’s advice or a doctor’s orders or a hospital procedure or a government regulation made perfect sense on one day and seemed irrelevant or intrusive on the next, it’s probably because you were working and thinking in different modes at different times. (p. 24)
On Learning the Science of Dementia
Make no mistake: as we gain a greater grasp of the ambiguities and mysteries that
surround dementia, the problems that lie ahead don’t fade away. Rather, they assume a
greater and some times ruthless clarity. Dementia is irreversible. It lasts a long time. It
gets worse. It’s terminal. A dementia diagnosis is bad news, to be sure. But in the
process of arriving at it – the process of systematically eliminating other possibilities and
of categorizing the symptoms to infer the type of dementia involved – we find ourselves
moving away from the sense of being cursed. The terrible binary question of “Yes or No”
yields to more nuanced questions of degree: “How much,” “How bad,” “How significant,”
“How serious.” (p. 61)
On Moving the Loved One into Assisted Care
Our loved ones are human beings, after all, and over the years, we’ve learned through experience that certain kinds of music, certain tones of voice, certain flavors of food, and certain physical gestures trigger bursts of temper. Over the decades, we acquire the skill of stepping around these land mines for the sake of peace in the household.
We then watch with sick apprehension as institutional caregivers, who have many foible-ridden residents to serve, cheerfully step on those mines. Some people, like Ben’s mother, don’t like to be touched, even if it’s friendly and even if it’s necessary. Some people, like Mary’s father, aren’t very friendly when they wake up in the morning. Some, like Nancy’s friend, cling to a sense of superiority, real or spurious. And in
institutional settings where it is logistically impossible to accommodate every foible of everyone, clashes can result: clashes where the blame, as in most quarrels, is distributed among the parties involved. (p. 106)
On Ambiguous Loss
The role of stress in dementia caregiving sometimes over whelms our awareness of the
role of grief in caregiving. There is much to worry about when caring for a loved one
with dementia, but there is also much to mourn. A 2010 survey of research into
caregiver grief makes two important points. First, the grief that we experience before the
loved one dies is comparable to the grief we experience afterwards; it is no less
powerful and no less implacable. Second, a significant factor in caregiver grief relates to
what researchers call “ambiguous loss.” This is the suffering we feel, not through the
steady loss of the loved one’s faculties, but through the unpredictable ways in which the
loved one’s faculties appear to fade and then return and then fade again. (p. 136)
On Music
The power of music to evoke strong feelings without confining them to specific
meanings has enormous practical benefits in dementia care. Sharing an experience that
has meaning for the caregiver and for the loved one can be deeply pleasant for both,
while releasing their shared experience from the burden of aligning the meaning of th
experience between them in language. When the ambiguities of the imagining mode
become burdensome, due to an increasingly vague or eccentric use of language and
categories, listening to a song or singing it after a fashion can provide a connection. (p.
149)
Is Dementia Care Good For You?
Beneath all the trite “Never say die” and “It’s all for the best” stuff, I am going to argue
that, under certain circumstances and with a healthy bit of good luck, dementia care can
help you in your broader life. It’s just possible that you will emerge on the other side of
the experience with some unexpected skills and ways of thinking that are surprisingly
resilient and relevant to the general task of living. After you’ve had a good long rest. (p.
166)