Three years ago, on a crisp November morning, my mother fell down a long flight of stairs in her home. I didn't know at the time that her life, and mine, were also about to descend into a dark and often agonizing journey through Canada's healthcare system, or that I would witness the life-affirming heights to which the human spirit can soar out of love and devotion.
She suffered hemorrhages to several parts of her brain. Then 89, she was given little chance by neurosurgeons at one of Canada's leading teaching hospitals. They declined to operate and left her on life support. Elderly patients rarely survive a fall like this. But within a few days, she awoke from the coma she had been in and could recognize familiar faces. She began to show gains that even surprised her nurses. That progress was shattered a week later, when she suffered a cardiac arrest after being transferred to another unit that failed to monitor her condition adequately.
While almost no patient over 80 survives a cardiac arrest, more brain damage resulted. She now required a tracheostomy in order to breathe and a stomach feeding tube for all her nutrition and medication. The trauma centre's lead physician warned that she would never leave the hospital alive.
After some three months, she was transferred to a hospital closer to her home. There, an incredible cascade of medical errors led to life-threatening incidents and more setbacks. By the time this second hospital was through with my mother, her demise was said to be "imminent."
Mother had other ideas. When we brought her home to a setting that virtually replicated her hospital room, we did not think it would be for very long. But I could see from her eyes, and from her radiant smile, that she was beginning to focus on getting better. I had a feeling that she had decided to make the journey back. If she was willing to embark on that monumental effort after all she had been through, the least I could do was devote all the time and energy I had to help make her recovery possible.
Learning about the effects of a brain injury was the first step. The hospitals had been pretty useless in providing any information about the brain's recovery from a serious injury. We scoured the Internet every night for anything that would help us understand what was happening with Mother's brain and what she needed to recover.
Next, we took a serious look at her medication. Some drugs were prescribed in doses far in excess of what is recommended. Serious medication conflicts and clinically significant interactions had been ignored. I contacted some of the best experts in their fields for help. Once her medication regimen was sorted out, progress came faster.
Then, my brother and I took on the roles of physiotherapist and speech therapist. We looked for all the best advice we could get. Something must have worked. Mother began to talk and to show curiosity about her surroundings. By her 90th birthday, she was walking again, with assistance. It had been quite an eventful year.
Today, she can read and recite lines from her favourite poetry. She engages in conversations and asks questions about the world around her. At a family event last summer she joined with us in singing "Happy Birthday." Everyone was blown away. One day, after we helped her walk back to her bedroom, I reminded her that her doctors said she would never walk again. Without a second's hesitation, she responded, "Well, they were wrong, weren't they?" Mother was back.
There are challenging days still, as there are with anyone recovering from a traumatic brain injury. And Mother would have been so much further ahead if she had received the hospital care and support she needed. I might even have been able to resume my career. But after one or two of what I call "cloudy days," she will suddenly show a flash of insight or an observation that astonishes. Sitting in the garden this summer she turned and looked over to some bright yellow flowers. "That's a lovely flock of coreopsis," she said.
The events of the past three years have moved my life onto another unexpected path, as an advocate for greater patient safety and stronger healthcare accountability. They have also brought me into contact with families from Cardiff to Canberra and all through Canada and the United States, who share the common bond of hospital horror stories and a determination to bring about change. Their experiences have convinced me that had we not been a constant presence in our mother's hospital care, and intervened to prevent and respond to the epidemic of medical errors inflicted on her, the outcome would have been very different. Fortunately, we discovered a highly-skilled home care nurse whose tender touch and positive attitude is exactly what my mother needed to improve. It is moving to see the bond they have developed.
I have also seen that there is something astonishing in what the brain can do to repair itself. Luckily, it is not always determined by the dismal pronouncements of doctors.
Most of all, I have learned that my mother, at the age of 92, still has much to teach about the indomitability of the human spirit and the power of faith. As we were growing up, she often reminded us that life is about overcoming barriers and clearing the path for others. Having spent so many years as a nurse healing those who were hurt and comforting people struggling with addictions, it is so much like the unique person she is that she would make it possible for her personal tragedy, and what she has done to overcome it, to become a story that can inspire and help others.
It has been a gift to be able to walk this journey with my remarkable mother.
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