My name is Patricia Jean Smith. My husband is Ron Smith. I was sixty-five and Ron was sixty-nine on the day our lives changed, the day our lives went sideways. It was November 19, 2012, the day that Ron awoke feeling odd, the day he ultimately suffered a massive ischemic stroke to his brain stem in the Waiting Room of the Nanaimo Regional General Hospital. At the time we were living in our newly constructed home, which we had designed and built with the assistance of Ron’s brother, Brian, a master timber-framer from Campbell River.
When we ultimately moved into our custom-built home, complete with a study for each of us, we could recite the history of every nook and cranny. We had created an environmentally sensitive space in which to work, to write, and to play.
Two years later Ron’s brain attack hit.
For two supposedly well-educated retirees, we were woefully ignorant of strokes and the devastation that they can wreak on the body, mind and spirit. For my part, I had no idea what a stroke was. I didn’t know that the affected area was Ron’s brain, or what the effects of a stroke would be on his physical and emotional being. Ten years ago, I had no idea that stroke is the number one cause of permanent disability world-wide.
Unfortunately, most of us are ignorant of stroke. People who are having strokes commonly mistake the condition for something else. Even medical people specializing in the stroke field can misdiagnose their own stroke symptoms. They conclude they are suffering from the flu, or a headache, or simply coming down with a cold. They often go to bed! When Canada’s Chief Medical officer suffered his second stroke several years ago, he assumed he had the flu, and went to bed.
Recently a neurologist working in Oxford, England, and on faculty in that venerable old university, Dr. Udo Kischka, published an article in the British medical journal, the Lancet, in which he admitted to doing the same thing. While having a massive stroke he thought he had the flu and went to bed. He admitted in the article that, after thirty years as a consultant who had advised stroke survivors on therapy and recovery, he now realized how little he understood about the effects and consequences of stroke. When he uttered to his wife, Dr. Helen Kennerley, a clinical psychologist and university tutor, a few hours after his stroke, “This is a life changing event,” he had no idea just how life-changing it would be.
One of the design features that Brian had insisted upon when he drew up the plans for our new house was to include extra-wide doors, thirty-six inches wide instead of the customary thirty-two to thirty-four. Brian said he always designed his houses to be wheelchair accessible. Given that our house already had a level entry to main floor living, Ron and I agreed this added feature could be helpful should we ever need to sell our house. Never once did we think either of us would need a wheelchair, or that we would be so grateful for Brian’s foresight.
Post stroke treatment decisions, decisions which directly affect the quality of patient care, are often dictated by a person’s living situation at home.
Are there stairs to climb?
Can the doors accommodate a wheelchair?
Does the survivor live alone?
Is there anyone who can care for her?
Or for him?
At the end of December Ron gave up his room at the Nanaimo hospital and entered its Intensive Outpatient Rehabilitation Program. In his first session as an outpatient, we had a meeting with his “team” ―Elvira, Rehab’s head nurse, his occupational therapists, his physiotherapists and Tina, Rehab’s social worker. We all sat in a circle and discussed the work ahead. It was heartening to have so many people united in a common purpose―Ron’s recovery.
The ten-week program passed quickly. Each weekday morning, I packed a lunch for us which we later ate in the hospital cafeteria. While Ron worked out in the gym or on projects in occupational therapy, I sat in a quiet spot at a table by the big windows in one of the therapy rooms and spent much of my time reading.
When his Intensive Outpatient therapy ended, and he was discharged from the program, we were abruptly cut off and left to our own devices.
No more team.
No more support.
We felt abandoned.
We looked at each other and wondered what do we do next?
Gradually we pursued additional therapies―acupuncture, alternative medicine, private physiotherapy and massage therapy. All of them helped somewhat, but none was a total solution. Fortunately, we lived in a community with a Wellness Centre, complete with a gymnasium, rooms full of exercise equipment, a lounge and kitchen. Most importantly, the centre had a swimming pool and a hot tub.
As soon as we joined the centre Ron’s rate of recovery speeded up, in large part due to the young Irish personal trainer we soon hired. Though separated in age by a couple of generations the two hit it off immediately. Scott and Ron soon delighted in a raucous banter which formed the basis of their communications. The workouts, though demanding, were always fun for both. Scott designed and tailored exercises for Ron’s specific needs and usually had something new to challenge his student. Importantly, he kept Ron’s specific disabilities in mind. After two years working with Scott, Ron’s physical strength, balance and co-ordination were much improved. He could now walk short distances without the aid of a cane or his walker.
In time, after Ron’s workout, he and I would head for the family change room where I took off his shoes and put on his Aqua Socks. Once he was set, I would join Ron in the pool. While Ron exercised in the water, I swam laps.
For me, there is something primal about swimming. It frees me from gravity, reminds me of my cousin sea mammals―whales, dolphins, sea lions, porpoises, seals and so forth. When I’m in the water, be it in the ocean, in a lake, in a river, or in a pool, I love to dive, leap, turn somersaults, splash Ron. I love this environment which allows me to act like a kid again. After a swim, followed by ten minutes in the hot tub, followed by a shower in the change room, I feel like a renewed person, cleansed inside and out. I remember thinking as we drove home from the Wellness Centre after our first day in the pool: This is going to be good for Ron, but it is going to be equally good for me.
All these extra therapies come with a price tag. Those who can afford them can get them. Those who can’t are out of luck. Generally, there is little recognition for the needs of the newly disabled and their fledgling caregivers. Certainly, the cost of extra therapies cut into our savings. Even now we still try to make it to the pool five afternoons a week. Fortunately for us, the pool remained open during the Pandemic.
A few years ago I discovered the Well Spouse Association website and learned that there are clearly defined stages in caregiving, although the boundaries can blur. It is always possible to take a couple of steps forward and then fall back. According to a featured article by Marty Beilin entitled The Caregiver Journey – Pathways to an authentic and fulfilling life the first stage is The Heroic Stage. In this stage optimism abounds, as the well spouse determines to do everything they can to help the ill spouse heal. Certainly, I was anxious to get Ron out of the hospital and home to my care as soon as possible. Full recovery was our goal. Yet, when the first anniversary of Ron’s stroke arrived, we were both depressed by the glacial progress he was making, despite our best efforts.
Eventually I began to realize that stroke recovery was going to be a long-term proposition. Stage Two – Ambivalence had arrived. According to Beilin this is the time when caregivers start to experience internal conflicts, physical exhaustion, financial worries, and even clinical depressions—the time when my mantra unconsciously became I Need a Break. I Need a Break. I Need a Break.
Stage Three, the New Normal, happens when the caregiver has come to terms with his or her long-term situation and has found new ways of coping. This may include placing the ill spouse in a nursing home or finding adult day care.
At first Ron and I were just struggling to cope. That we managed as well as we did was due to the support of family and friends, and people from our larger community. Ultimately the main reason why we have reached a stage which I would agree is our new normal, is because we have been able to build a bridge between our pre-stroke selves and our post-stroke selves. While Ron’s stroke left him physically challenged, his cognitive functions and his relationship to the language were not impaired. He did not suffer aphasia; he continued to be able to say what he meant; his words made sense, even if his pronunciation was sometimes slurred. He could communicate with friends via the internet; he was able to edit the works of others; and he could still write his own books, albeit with one finger on his left hand. Today we continue to share our passion for literature. We are both able to read and to write. We can still live what the Well Spouse folks call authentic lives, continuing to do what we have always shared and loved.
What we have learned is that the brain has an extraordinary power to heal. And that every stroke story matters.
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Patricia Jean Smith is the author of The Golf Widow’s Revenge, Double Bind, and A Song For My Daughter. Her most recent book, The Caregiver’s Companion, was published by Rock’s Mills Press of Oakville, Ontario, in January 2022. It is available on Amazon.ca or directly from the publisher. She lives with her husband of over fifty years, the writer, Ron Smith, in Nanoose Bay on Vancouver Island.
Editor’s Note: The views expressed in each of our Caregiver Stories are the author’s own, and do not necessarily represent those of FCBC.