Written by Patricia Smith
~In honour of Family Caregiver Month, we asked our community to share their personal stories about caregiving—the joys, the challenges, insights gained—to share with other caregivers and our larger communities. Here is one such submission…
DENSE FOG VISIBILITY LIMITED was the warning on the highway sign at the base of the Malahat as Ron and I drove south to Victoria on February 15th. In fact, the warning told us nothing new since we had encountered the above conditions for the previous seventy kilometres. From Nanaimo south the fields were still snowbound. A thick mist, caused by warm temperatures and heavy rain, rose from the fields creating the fog.
Ron had been invited by speech therapist Dana Haydon to speak to one of her therapy groups which meets in the Community Room in the Uptown Mall in Victoria every Wednesday. The people who attend this group suffer from aphasia caused by a stroke or other brain injury. Aphasia is the inability to comprehend and formulate language. Intelligence is unaffected, but the people who Dana works with have difficulty reading, writing and speaking. Often, they cannot find the right words to express what they want to say.
As children, it takes us years upon years to learn to speak, to read and to write. Many of the people in Dana’s group must go back to basics and re-learn these precious accomplishments. The logic behind the Uptown Mall location is that the group is able to take what they learn in the Community Room and immediately go out into the real world and, with the help of Dana or her fellow speech pathologist, Janine, put these re-learned skills into immediate use. The powerful message which Ron brings to groups like Dana’s is to never give up, to re-assure them that healing continues to happen, that it never stops. The gift he receives in return is the warmth, support and gratitude from courageous people overcoming daunting and frustrating obstacles, all of whom yesterday insisted on buying his book, determined they will soon even be able to read it.
One of the most important stroke books I have read is Diane Ackerman’s One Hundred Names for Love. When her husband, the writer Paul West, was in his late seventies, he suffered a massive stroke which totally bombarded his brain. He was left with global aphasia. Ironically, especially for a wordsmith, the language areas of his brain lost most of their ability to process language. Her husband was no longer able to speak sensibly.
Luckily for Paul, Diane was an accomplished writer herself, and she wasn’t prepared to give up on his reading, writing, and speaking. Or their intimate word play. After getting him home from the hospital she hired several different people to help with his daily care and encouraged the help of traditional speech therapists, whose therapies often left Paul frustrated and demoralized.
One day, long after he had been discharged from hospital, she happened to be walking through their home library where Paul was working with a speech therapist. She observed the woman pointing to the telephone and heard her ask Paul to tell her what it was. When Paul responded tentatively with the word TESS-er-act, the therapist corrected him, announcing that he had used another of his nonsense words.
Diane immediately turned around and corrected the therapist. She advised her that tesseract was a real word. “It’s a three-dimensional object unfolded into a fourth dimension. In a strange way, he’s right, that’s what a telephone is.”
Diane “didn’t actually mean the fourth dimension of time we associate with space-time, but a physical fourth dimension—like length, breadth, and width . . .”
Paul nodded vehemently in response.
This was the transformative moment when Diane’s understanding, Paul’s therapy and the trajectory of their lives dramatically changed. Diane realized, as my husband Ron maintains, that a stroke survivor’s therapy should focus on his or her strengths and not on their weaknesses. On page 193 of One Hundred Names for Love Diane states: “From then on, I began rethinking Paul’s therapy and creating homework tailored to his lifelong strengths, words and creativity, exercises with a little fun, a little flair, and not condescending . . . Had he been a welder or a golfer, I would have tried to include those activities.”
Recovery post-stroke should attempt to tap into the neural networks and connections that have been built up over a lifetime. With engaging and inventive therapies tailored to a stroke survivor’s strengths, neural rewiring can be speeded up and healing encouraged. A bridge between the pre-stroke person and the post-stroke person can be built.
In the nine years since Ron had his stroke he is still dumbfounded to know while lip service is paid to the fact that every stroke is different, the treatment and therapies for stroke survivors are still generally the same. The emphasis is always on the stroke survivor’s disabilities. These are obvious. Yet the stroke survivor’s abilities are never identified and hence never tapped. They are never engaged to aid and enliven recovery. If they were, recovery therapy could extend in all sorts of intriguing directions.
The whole person could be engaged. Bridges could be built to link the pre-stroke self to the post-stroke self. Recovery might even, at times, become fun. And who better than caregivers to help identify the stroke survivors’ previous abilities, interests and passions? Once Diane Ackerman actively took part in designing her husband’s speech therapies, his recovery rapidly improved. He went on to write several more books. The lesson here is clear: We need to stop treating the part. We need to engage the whole.