1121 A testament to resilience

Four Umbrellas: A Couple’s Journey Into Young-Onset Alzheimer’s
by June Hutton and Tony Wanless

Toronto: Dundurn Press, 2020
$21.99 / 9781459747791

Reviewed by Lee Reid

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“Ah yes, I remember it well,” is the comical reminiscing of mismatched memories from the iconic film Gigi (1958). In the nostalgic film, two aging lovers sing about their relationship as they gaze into each other’s eyes.

It warms my heart
To know that you
Remember still
The way you do

Their musical duet is a poignant metaphor for the intimate conversational format of Four Umbrellas. This 214-page book, written by married authors June Hutton and Tony Wanless, is heartbreaking, riveting and thoroughly educational. Take time to read it. Don’t be alarmed by a subject like dementia, which can appear frightening or horrifying. Although the book addresses the tragic loss of cognition and memory that occurs with Alzheimer’s and dementia conditions, this book opens up creative possibilities with a great deal of raw honesty and compassion. Since one in five Canadians have experience in caring for a person with dementia, it is a topic that commands attention.

Breaking their self-admitted journalist’s code (p. 183), the authors, who have been married for over thirty years, acknowledge that, through their vulnerable and courageous dialogues, they reveal far more personal content than is required or expected in journalism. Applaud them! I was not aware of said code until Hutton and Wanless, who are seasoned career writers, state that the work of journalism is to witness, see and tell the story. Journalists are cautioned not to become their story, yet Hutton and Wanless do exactly the opposite.

In Four Umbrellas, Hutton and Wanless are the story. Except for a short list of symptoms searched from the site of the Alzheimer’s Society of Canada (p. 57), they do not rely on lists of symptoms to tell their story. In their uniquely personal way, they do explore the differences among the confusing symptoms and varying levels of dementia, and Alzheimer’s disease – which Tony wrestles with. Alzheimer’s and dementia erode the functioning of the brain. Associated with this is decline of body functioning, and loss of memory. These can be frightening or taboo topics that most of us hope to avoid. Yet the authors bring these difficult subjects to life in a way that invites us to read more and know more. Their book is a love story.

Desperation occurs when you realise, with the authors, that there is no escape from Alzheimer’s or dementia. That place of desperation, or surrender, is the best motivation for creative process. The authors rise to the challenge. Because their writing is so true and compelling, their relationship, and the challenges they face, become our story too. Like them, we do, and we don’t, want to know about scary conditions like dementia. Our ambivalence mirrors the confusing and unpredictable landscape of dementia and Alzheimer’s, where normal and abnormal states of mind co-exist. How can you tell the difference between normal aging, memory lapse, and the many facets of a progressive brain disease like dementia or Alzheimer’s?

This book breaks more than a journalist’s code. It breaks a cultural code that prefers to keep uncomfortable conditions like addictions or mental illness or dementia and Alzheimer’s a secret; consigned to, and housed, at the margins of social awareness. Thanks to books like Four Umbrellas, this attitude is changing. The couple’s journey through Alzheimer’s disease reassures our fears that we too may be alone with a death sentence that can rob us of control and dignity. Tony states that his Alzheimer’s is like watching himself slowly die. He figures he can slow it down by fighting it. He makes fun of it, calling it “AL”… his doppelganger (p. 173). “Booga Booga,” he jokes, “ … (look out it might be catching!).” As he forgets the names of people in his life, he finds he cannot hide his condition. “…I’ve just been humbled,” he admits (p.155). “But it doesn’t mean it’s the end of your life. Actually, it’s the beginning of a new one.” (p. 157). His denial, defiance, humour and courageous vulnerability characterise his role in the book. “I also believe, hope, that there comes a time in everyone’s life when they can finally shed that cloak they are hiding behind and come out as the person they really are” (p. 156).

The book is well organised chronologically. June, who is the primary historian, traces back more than twenty years to 1996, in order to recall possible signs of young-onset, and she does it with Tony’s help and collaboration. For Tony, the early signs showed up as unusual mood and behaviour changes. Young-onset may not necessarily present in a dramatic way. Forgetting important memories, or stumbling through odd gaps in word or language sequencing, can seem normal. After all, don’t we all experience this at times?

What June uncovers, and how she invites Tony to duet, despite his inconsistent memory, requires extraordinary tact and sensitivity. As she faces this dilemma of inclusion, she realises that, at some point, she might have to take over all the recounting and organisation for their book. She is caught between the imperative to manage and remember everything (with the accompanying frustration and anger at doing it all) and the necessity to encourage Tony to participate and write from his own experience. As with the Gigi song, their realities are very different, begging the question of whose recollections are right and how to integrate and make sense of their data and shared history. June asks Tony’s permission to manage the book if, or when, he cannot. He consents.

In 2021, Tony is now aged 72 and June is 60. According to facts on the Health Canada website, the greatest risk factor for dementia is simply getting old. At the time of publishing their book in 2020 (and as far back as 2017 when they conceived the concept of writing this book), Tony and June were fairly young seniors.

In Canada, 500,000 people over 65 are currently diagnosed with dementia. This number is projected to double in ten years, which might be a low estimate notwithstanding the increase in dementias in seniors as a result of social isolation due to COVID-19. One wonders about the economic and emotional costs during this decade.

Current political will favours the building of more long term care hospitals and housing facilities for seniors, but the pandemic-afflicted economy is in a recession. The costs of health care, and the increase in aging patients, continue to rise at an alarming rate. Who will pay?

Dementia is far more familiar to many Canadians than is commonly realised. As previously mentioned, one-in-five Canadians have already experienced caring for a person with dementia. Every five years, the rate of dementia doubles for those sixty-five and above. The reality of “Ah yes, I remember it well,” is that, by age eighty-five, at least one in four people are projected to have dementia. In 2021, over fifty million people around the globe already live with dementia. Caretakers are mainly women. The stress of caretaking increases their risk for dementia, especially if there is genetic predisposition (note: the genetic variable can be tested). In June’s case, there was predisposition. She describes herself as third time unlucky, with a six times greater chance of contracting dementia because she was a caretaker for her parents through their dementia. Now there is Tony. The obvious irony is, why him and why not her?

According to Health Canada, there are approximately 400,000 people who, as we see from the several years that Tony and June dealt with indeterminate and ambiguous testing, are undiagnosed. Yet this demographic continues to live independently with cognitive impairment, Alzheimer’s or dementia. Whether or not they admit it, most seniors worry about their cognition and memory. It is worth noting that this very functional, (but relatively under-the- radar) group, are managing their own cognitive decline. How do they do it? For years, Tony experienced occasional symptoms with mood swings, absentmindedness, forgetting, or mental looping– which repeats simple tasks, but he was highly productive. He was working, travelling, managing the couple’s accounting and taxes, and contributing his skills to the couple’s household and social network. As with many seniors (although his symptoms began in young middle age), he attributed changes in his cognition to bouts of depression, to daydreaming, or to his brilliant multi-tracking attention span. Nobody knows how many people really populate this ambivalent and very resourceful grey zone. Is this because the independent population does not seek help? Is it that many are quietly cared for by family and community? Is it because they are a resilient group who figure out the necessary coping skills to remain independent? This is an area worthy of research, if not more code-breaking journalism.

Young-onset Alzheimer’s is particularly easy to miss and hide. The signs of cognitive decline caused by young-onset can begin with people as young as their forties or fifties, whereas dementia and Alzheimer’s are largely considered an “old person’s disease.” It is not!

In Four Umbrellas, the couple trace back ten, twenty and more years to make sense of the onset of symptoms that only became obvious and critical as Tony’s Alzheimer’s progressed. Was Tony’s serious fall in 2011 actually a stroke? Was it a red flag indication of Alzheimer’s? Progression may seem elusive, but it is inescapable.

Although Four Umbrellas does touch on the financial and health costs (and risks) to people challenged with dementia conditions and Alzheimer’s disease, and the associated expense for their medical and support systems, the book is not an in-depth analysis of problems and solutions. It is not a factual report from Health Canada as quoted by the numbers and demographics in this review. It is a love story about surviving an irreversible condition. It is about the mythic descent into a chaotic hell where loss of language and coherence is one casualty. Loss of intimacy, personal history, and reciprocal relationship is another casualty. From that journey, it is possible to chart a creative path. That is the crux of the book.

Four Umbrellas is a story about trauma, love, loss, redemption, reaching out, coming out, and bringing visibility to a topic that is fraught with social stigma. We learn how a relationship can forge a new path despite all the challenges to order, and language and sequencing that are endemic to dementia conditions. Hutton and Wanless bring this widespread global dilemma to the forefront of our awareness and it is not comfortable for them or for the reader. It is a courageous book that does not cover up the enormity of the social and personal costs for caregivers…the loss of work, the injuries and the costly effect on health and the economy.

Four Umbrellas does not burden the reader with lists of comparisons between the normal aging brain and symptoms of cognitive impairment, dementia, or Alzheimer’s. However, in tandem with changes to their relationship, the authors do ask searching questions that inform the reader about how to make your own comparisons. Finally, and after years of testing, they were able to confirm Tony’s diagnosis with Alzheimer’s disease in 2019. Throughout their book, their inquiries and repartee invite the reader (you) to do your own research on the varying symptoms associated with decline in mental capacity. Four Umbrellas will empower you to investigate any concerns you might harbour.

Some readers may prefer a more academic approach with graphs and statistics and examples, but I appreciate this book’s artful unfolding of potentially upsetting data and how it is revealed through the lens of the writers’ emotions and personal experiences. Translating neuroscience into the language of emotional cognition is, paradoxically, an enchanting way to educate the public about a dreaded topic. This style builds compassion, and it keeps the reader engaged. With Tony and June, blow by blow and year by year, we journey through the arduous cognition and brain tests, the confusion, the accidents, the scary unknowns, the conflicts and the absurd incoherence that happens when the brain forgets. This book will help to reduce fear and isolation for readers who feel concerned about decline in cognition for themselves or for loved ones. It opens up honest conversation; therein lies the possibility of help and intimacy.

But whether or not we, the readers, worry about personally developing dementia or Alzheimer’s, we cannot avoid feeling with the authors into the brain and journey of this condition. Their book highlights the need for supports and early testing, not only for people afflicted with dementia, but to help their caregivers. June reveals the effect of diagnosis. “While it is expected, the very fact of it, confirmed by the day-long tests and the brief test and the MRI, truly cause me to stagger. I am unbalanced by the truth, thrown into the dizzying prospect of a future that is all too familiar to me. In that moment, I feel cursed by the Gods” (p. 161).

Here are questions this book addresses:

Do you, the reader, want to know the signs of changes to the brain years before a diagnosis is learned? A diagnosis that might be delivered only after months or years of testing, confusion, chaos, grieving, raging, accidents and unusual twists to reality? Tony and June tell you. They describe the strange moods, the unusual disorientation, the falls, the language gaps, the fear, the disorientation and the loss of physical abilities that we take for granted. It is a blueprint that we need to know, partly because this is not talked about, but also because it is treated as “normal;” the expected decline with aging. Tony describes the horror of losing himself to Alzheimer’s: “This is a glimpse into my future: a mass of dead or dying flesh that was once a human being. No joy, no sorrow, no laughter, no past, no future” (p. 196).

Do you feel chronic brain fog or confusion? Would you like to know the brain tests you can request? The book points the way. If you are forced to assume more control like June, or are beset by doubts that you are sane, or if you feel alone, as many caregivers and cognitively challenged people do, this book validates your concerns.

Are you worried that you are exaggerating a situation of cognitive decline that, on the surface, seems to simply demand more control, focus, and better management? If you sense that your brain is not working normally, do you wonder who will reassure you and understand…and who will provide the care?

Who, you may ask, will determine the restriction of your loved one’s activities? How is it done? Who determines when it is time to stop driving, or cooking or working or managing the mounting bills? Who measures the incremental loss of physical capacity? Who and how does the public health system assist? Will the brain specialists present obstacles and denial to testing or to the medical help that you believe you need? Will you hear a “fake positive” message, such as “Don’t worry, everyone forgets … it’s normal.” But you know it isn’t. And you may doubt your perceptions.

If you have an ethical or moral dilemma about labelling or judging cognitive decline, or about violation of privacy and cross-examining your loved one, this book will clarify the ethics. If you worry about being over-controlling, or you worry that you are exaggerating symptoms and obsessively planning for doom, this book shares hands-on wisdom. If you judge that you are too critical, too pushy in demanding a diagnosis, or you fear placing your loved one in care, and you hate speaking for them and over them, there is reassurance. In Four Umbrellas, you are not alone.

On the muted green cover of this book, we see four red umbrellas blown askew. Are they flying upside down and inside out, are they rising up, or is it down? We can’t tell which. You will realise that this is about lives, not umbrellas or a game of pick-up-sticks. June describes the year 2017 as a cover-up year of secrecy, where the couple know something is wrong but can’t admit it. “It was a half life, in which the disease, with no formal or written diagnosis, kept us financially troubled and emotionally stifled– in a silent grief in which we were alone to contemplate this uncertain future” (p. 99). For the sake of irony and expedience, they refer to their emerging book by its initials: F.U.! (p. 106).

But what if the ironic ‘F.U.’s’ represent your brain, or the many facets of dementia or Alzheimer’s? Tony describes his inner umbrellas as “… a brain blob. An Alzheimer’s horror vision…. a fogginess … a custard that coats the brain … a nuclear blast zone where everything that was once there is now dead” (p. 195). The tumbling umbrellas represent his brain looping repetitively. When looping occurs, he cannot see or recognise objects and direction; he can’t remember sequences and so he repeats the same activities, in this case packing umbrellas into a suitcase. He is helpless to stop it until his mind regains ability to connect the dots. Any reader who struggles with forgetfulness or limited attention span (or brain fog), can relate to Tony’s urgency and hurry to get everything done while he can. We can understand the dread that he will forget the task at hand. He is doomed to fail … and he allows us to see the shame and despair as his brilliant mind lets him down. Yet there is equally brilliant insight. “I fear too often that I was in journalism too long, forgot how to write with emotion, and simply lost it” (p. 142).

What hope is there? Tony presents an intriguing prospect. In describing his journalistic skill with language, he says of his work, “I may have calcified into a mere talker, a gabbler, a smartmouth with little substance…. I would like to re-learn, to go back to that state where words and their use in delineating thoughts and feelings are important and then should become (almost) art …. I do want to make this into something worthwhile. I long to be a good “diarist” who can make myself and readers understand our emotions, thoughts, fears etc. that flow now when I am at the nadir of my life” (pp. 142-143).

In my estimation, he succeeds brilliantly. One wonders if the loss of one faculty opens another. Can the decline of IQ grow EQ (emotional quotient)?

As readers grasp the totality of Tony’s graphic description, we may gasp, tear up, and hope that no one will detect how raw and vulnerable this book can make us feel. Why? Is it because of social stigma? Or is it because the authors’ repartee exposes a whole and vulnerable person consisting of two parts? We can relate to each part. We can be in the organiser role, or, conversely, why not ask if we are the fragile one with a “condition?” Are we both parts co-existing under one brain? Although we may prefer to be the “part” or person with the assumption of control, June warns us, “This book is our way of saying to all: Pay attention!” (p. 194).

Whether or not we see life through the more vulnerable lens, or we favour the capable organiser part, we manage fragility and vulnerability in ourselves with varying levels of denial, aptitude and compassion. The challenges to competence grow with aging. This is a book about resilience, which June, who must take on the management role, depicts as our capacity to endure.

“Complain, pay attention … speak out,” she advises:

I have one message for spouses and children. Speak up during medical appointments. Don’t be shy. Document the changes you are noticing … then write them up and bring them to the next appointment … email them to the doctor ahead of time if you want the concerns to arise naturally in that session. Ask for copies of doctors’ notes from each appointment. Seek a second opinion if you feel your concerns are being dismissed. Push hard for an MRI. Then go to your own doctor and cry all over the floor if you have to. You need help too, because it’s a very long road ahead of you. Keep in mind, and remind all those around you, that whether it’s a parent or a partner you are caring for, that caring stops if you are not being looked after, too (p. 194).

The high moral ground held by this couple, as they sort through their roles and responsibilities, is a lesson in honest communication. They invite you into their worlds, and they do it so artfully that you don’t realise that you, the reader, have broken the reader’s code of detached impartiality. In the very least, readers will emerge with a fresh appreciation for the small daily routines and people that define your sense of normal, and the realisation that it is all temporal and precious.

Where does this all lead? Tony’s social strategy is to let go of his previous public persona, his brainy extroverted charisma, and to replace it with a studied “stoical bookish personality.” Through Buddhist mindfulness and meditation, he cultivates an inner haven from shame and failure. He joins Paul’s Club, a social support group where people with Alzheimer’s and dementia can feel accepted. The book generously donates a portion of the proceeds to Paul’s Club. This is a cause worthy of support.

June is unflinching. When we read “Not Me,” which is her previously published short story in the appendix of their book, we grasp how sensuous and gorgeous her language and perceptions are. In Four Umbrellas, this gift is concealed behind her practicality, as she assumes more and more management for the couple’s life.

Four Umbrellas is more than a testament to resilience. It invites us into intimacy with our own vulnerability in a way that we may not have asked for or expected. Coinciding with the pandemic, which globally has caused a collective vulnerability, the message is timely. With dementia, Alzheimer’s, or a pandemic, we can’t ignore when it affects your life. Tony and June give competence and fragility an equal voice in their book. Together, they try to make sense of a bewildering and horrific reality. Four Umbrellas is a labour of love that will encourage resilience and compassion in those who read it. In my opinion, this book should be available as a resource in doctors’ offices, and an enhancement to treatment and training programs that address dementia and Alzheimer’s disease.

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A retired clinician with Nelson Mental Health, Lee Reid has written three books about BC rural and coastal communities. Her stories and counselling centre around the values and health needs of BC seniors. As people in her peer group (she is now 75) disappeared into extended care and assisted-living residences, and having lost a dear and brilliant older friend to dementia, she started to research and write about the tragedy and gifts of dementia, aging, and extended care. Lee has also written about intergenerational education, rural home support care services, and the resilience and challenges faced by seniors. Her books are From a Coastal Kitchen (Hancock House, 1980); Growing Home: The Legacy of Kootenay Elders (Nelson, 2016), reviewed here; and Growing Together: Conversations with Seniors and Youth (Nelson, 2018), reviewed here. A fourth book — Stories of Mount Saint Francis Hospital: 1950-2005 — about the workers and the residents who populated an historic extended care hospital in Nelson — will be self-published soon. Visit her website here.  Editor’s note: Lee Reid has also reviewed books by Megan J. Davies & Rachel Barken, Ellen Burt, and Luanne Armstrong for The Ormsby Review, and in 2028 she contributed a memoir of growing up in North Saanich, “The Spider Hunters.”

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References:

Canadian Institute for Health Information. This site is an excellent source of information about the effect of dementia and Alzheimer’s disease on Canadians.

Kate Gregorevic, “The Gender of Dementia,” Aeon magazine, 2021

June Hutton, “Not Me.” Originally published in Other Voices, summer 1999*

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