By Cat Wheeler
Photo of Cat Wheeler (left) and Susan Tereba (right) by Suki Zoe
Imagine losing your beloved very slowly. Sitting beside you but gradually slipping away day by day, year after year, piece by piece.
We’re living longer than ever in history, and dementia is the price of our longevity. About 44 million people in the world have Alzheimer’s, with 5.5 million in the United States alone. One in six people over the age of 80 will travel this path.
Piece by Piece: Love in the Land of Alzheimer’s engages the reader on so many levels. It is sad, it is brave, it is funny, it is informative. It charts Susan’s challenging 14 year journey with humour and grace. The book highlights the heartbreak and exhaustion experienced by caregivers, who must juggle constantly changing symptoms, sometimes angry and destructive behavior, financial burdens and the emotional devastation of gradual loss as husbands and wives disappear in plain view.
“Humour saved my sanity,” Susan confided during an interview at the Ubud Writers Festival. It was dark humour, granted, but provided a counterpoint to the constant stress and worry. And writing the book provided an outlet for it all.
“I was sitting in a glorious Italian cathedral in 2009 when I was suddenly engulfed in a tidal wave of grief. I cried for days; I hadn’t realised how much grief I was holding. When I returned to Bali I thought of the many others who must be experiencing the same thing.
“I thought writing an article would be useful. But when I sat down and started, it became a book that pretty much wrote itself. The book was cathartic for me, and a legacy for Bob’s children and grandchildren.”
In the year it took to write the book she started a blog both to share the unfolding of Bob’s illness and to seek others in similar circumstances. She discovered an unacknowledged world of caregivers who were coping with Alzheimer’s patients and began to correspond with a community of people around the world who shared her experience.
When Bob became too difficult to manage at home she visited residential dementia facilities in the United States. “It broke my heart to think of him confined in a place like that,” she said. “I found a little cottage with a garden about 15 minutes from our house in Ubud, and trained four wonderful Balinese men to look after him. Bob had his own house, his dog, and attentive 24 hour care. He was taken out every day as long as that was possible, walked in the village, tidied the garden and watched TV with the guys. He was happy and occupied. I visited often. It was the best possible solution.”
It might have been the best solution, but Susan was wracked with guilt. The next three months were dark with depression as she adjusted to this next step in Bob’s illness. But the end of that year brought a gift of light and love. Susan met a new partner. Alan was kind and funny and fully supportive. Together they cared for Bob until he passed, with Susan by his side, four years later.
Writing the book clarified for Susan what she’d gone through on her long journey through Bob’s dementia. She found out how hard it was to tell the whole truth about hard times. The strain of being his primary caregiver, family earner, manager of their business, decision maker and researcher exhausted her emotionally and physically. But her editor encouraged her to include their love story, their travels, the founding of their business and their early days in Bali to bring balance to the tale.
We all know someone with dementia, and its shadow lurks around the corner for our own families and friends. Susan shares her experience through the book, her blog, her participation in the 2017 Writers and Readers Festival and her TEDxUbud talk (there wasn’t a dry eye in the house).
Piece by Piece: Love in the Land of Alzheimer’s is a book we all need to read. Find it on Kindle, Amazon and in Ganesha Books.
Feature photo by Suki Zoe