When Sheridan Rondeau’s husband Tony was diagnosed with Alzheimer’s, even the best intentions of family and friends weren’t helpful in easing their journey. Through love and hard work, Sheridan learned to adapt to Tony’s evolving symptoms and give him as much autonomy as possible. To combat isolation, she sought out and found kindred spirits in dementia support groups.
My mother had Alzheimer’s 25 years ago, and my family wasn’t at all prepared for her growing needs (our denial was powerful). It’s difficult to express loneliness and isolation, even to the kindest friends, if their own spouse (or, in my case, mother) doesn’t have dementia – especially when they offer well-meaning advice that doesn’t work in your situation.
Sheridan’s honesty about the relentless emotional and physical demands of caring for a loved one caught my attention. We chatted over email about her time with Tony, finding community, and sharing her experiences with others.
Q. In your experience, what do most outsiders get wrong about someone whose spouse or partner has dementia?
A. I think “outsiders” perceive caregivers as managing their loved one vs. enabling them. It’s true that many skills and abilities diminish but it’s essential to be an advocate and encourage rather than categorize the person into a “box”. I’m a firm believer that the diagnosed person is “still in there” and that minimizing participation and taking the reins completely only serves to add to their frustration.
Q. You performed music for decades and sold real estate before and during your marriage to Tony. How did you decide to begin writing? Can you share a little about the process of writing the book?
A. I’d been an active blogger for real estate purposes and missed the regularity of providing client education and sharing tidbits I learned or observed. When I closed my business in 2013, contacts with colleagues, clients and customers dwindled. I had no idea how to adapt to Tony’s changing ways and bring value to our time – up the proverbial creek without a paddle.
Caregiving is more than a task, it’s a vocation for which we have little or no job experience to outline on a resumé application. The monthly Caregivers’ Support Groups offered by the local Alzheimer’s Society were invaluable to everyone who attended. Some members were farther along in their journey and shared their ideas and experiences, and we cherished the confidentiality aspect especially when we felt so vulnerable and had nobody “outside” who understood the travail.
At day’s end, when Tony was abed, was the only quiet time I could grab for myself, and I began putting the events of the day to paper to clear my own air. Eventually, the idea came to me that these “blogs to myself” could become a source of empowerment, helping to raise the confidence levels of anyone who might relate to an incident or situation that had happened to us.
There are no roadmaps to follow and each person’s journey is their own, though each may walk side by side with their loved one.
An instructor at a writers’ workshop hosted by the Muskoka Author’s Association described a memoir as a “slice of time” and if we think about the very worthwhile therapy of crocheting granny squares, and to finally connect each piece together – it becomes an afghan!
Q. One especially endearing element of your book are excerpts from letters you wrote to Tony, who was christened “Braveheart” by his family. In them, you may describe an argument or discuss an issue that came up, but they invariably end by expressing solidarity, togetherness, and love. How did writing those letters affect you at the time, and why did you choose to share them in the book?
A. Writing these letters was truly cathartic. I’ve described Tony’s outbursts as “him getting it off his chest while I took it in the neck”. Discussion waned as he often forgot the subject that might be troubling me and/or it had no relevance to him. Rather than rock the boat and cause him upset, I resorted to writing the letters. I chose to include them as providing insight to readers about me feeling thwarted and having no outlet for my frustrations.
Q. In different chapters, you use many different metaphors for the life you and Tony had together. Do you have a favourite? The chapter entitled Driver Training, in which you compare elements of your journey to taking long-distance car trips, is my personal favourite.
A. I too like the Driver Training idea because it’s easy to relate to. Much of the time caregivers feel like a broken-down old jalopy but if we can relate to an idea or imagery I think it’s something we can visualize and implement.
In many ways the process we must engage first is common sense, but caregivers are sometimes blindsided by the diagnosis and are numbed even before we begin the journey. As well, being the driver is empowering because we know the safety and well-being of our passenger rates as first and foremost.
Q. Throughout your years of caring for Tony, what was the most surprising thing—about yourself, about caring, about Tony, about the world, or anything else—that you learned?
A. Despite my renowned strength of character and optimism, I learned that “no man is an island.” My feelings of isolation were acute, especially when keeping the peace was key. I seldom had a chance to socialize because I could not leave him alone and former co-workers and his friends drifted away. The regularly scheduled Caregiver’s Meetings were my lifeline.
Here is my last letter to Tony, which is not included in the book as it is the beginning of a follow-up novel.
Prologue 2015 Letter to Tony Dear Tony, Today is Wednesday, June 10th. I’ve just turned the key in the lock of our home for the last time. I walked away without looking back. It’s been a hellish six months since you died. You know I’ve always been a go-getter with a lot of guts – knowing you’re still cheering me on has given me the courage to finish this chapter of my life. Everyone has to keep moving – we can’t stand still and we must not look back – so the only other directions are to go forward and up. So many things have happened since December. Acquaintances have become friends – they came out of the woodwork to help and support me. Everyone’s shaking their heads in admiration. They keep exclaiming to me that “I don’t know how you do it. How can you keep it all together?” The holiday with my sister that was planned so long ago seemed like a wonderful opportunity for some rest and recuperation after you died. It turned into a nightmare when she died there, in my arms, just four months ago today. Of the three of us, I’m now the last man standing. When a wife becomes a widow everything changes. I think of you every day, and every night when I look up for that bright star that I call “Dear Braveheart.” My Mother asked me recently if I missed you – what a weird question! I had to think about the answer - she’s so direct. “Of course I miss Tony’s presence. I don’t miss who he became – I miss how he used to be.” It felt satisfying to say it aloud. The road has been a hard slug, but we’ve made it! And I have a new key in my hand. A key to my new apartment, a key to new beginnings for me and a new chapter in our story. We’re each in a new place we can call home, you There and me Here. I’m so proud of us both – we accomplished a great feat in our marriage and will be together again in the ever after ahead. Love you lots, Sherry
(Tony died in December, our little dog in January, and my sister in February – and I had to sell our home. After the clearing out process, my condo chick galpals helped with the packing and unpacking. It was a true demonstration of care and concern. I was numb then in body and spirit.)
Q. Your book chronicles many efforts to balance your needs with Tony’s. I loved your description of making scallops for a special anniversary meal because YOU wanted to celebrate your anniversary. How can a care partner keep her own needs in mind while living with day-to-day responsibilities?
A. I think it’s idealistic to keep one’s own needs in mind. The only promise of respite is finding a facility to accommodate whichever loved one a person is caring for. I waited too long. Trying to celebrate special occasions felt like a desperate grasping for “once upon a time.” The saddest time was when Tony didn’t even want to see our wedding video, intimacy was long-faded and he’d retreated into his own shadow.
Caregivers know the importance of self-care but it goes by the wayside because we think we can do it all.
Q. Your book ends as your caregiving role ends. What was your life like after the last page of your book, as you faced its next chapter?
A. I had to put on another pair of big girl pants and re-introduce myself to the world. I took a part-time job as a receptionist to make ends meet, but I felt devoid of emotion and disconnected. Everything took a huge amount of effort. I signed up for ballroom dancing lessons to get me out of the apartment, and I attended a one-day writers’ workshop hosted by the Muskoka Authors Association. That opened the doors for me with like-minded people.
Q. What’s next for you and your writing?
A. I’ve written 3-3/4 novels in series characterizing a widowed woman whose wings were clipped for a long time and now she wants to soar again. The locales are Ontario towns where galpals might choose to explore on a weekend, and “Bobbi Clarke” (the main character) grows in confidence and capabilities. A love interest of course but unlike romance novels, the endings are Happy For Now vs. Happily Ever After. She’s feisty and knows what she doesn’t want.
Congratulations! Your new work sounds like the perfect way to keep sharing your experience and your imagination.
Note: You can read an excerpt of Dear Braveheart: A Caregiver’s Loving Journey Through Alzheimer’s Dementia here.