Loss or anticipated loss of a loved one can lead to losing a part of you as well. C.S. Lewis described this in The Four Loves. “Love anything,” he said, “even an animal, and your heart will be wrenched and possibly broken.” Not only do we lose that part of our loved one that contributes so powerfully to our identity, but also, according to Lewis, we lose that part of our loved one that was an intimate part of others who shared our lives.
In April of 1994 my wife Lezlie was diagnosed with late-stage ovarian cancer. In the months that preceded and followed her passing, I saw a face of grief unknown to me in my work with those impacted by catastrophic illness. Sudden death leaves an instant vacuum. The death of a child seems a mistake of nature. The burden of Alzheimer’s disease is magnified for survivors when progression of cognitive and physical impairment results in loss of personhood.
In Alzheimer’s-type dementia, confusion, anxiety and disruptive behavior complicate the demands on caregivers. To manage the stress of tragic illness, I discovered it uplifting to see meaning in those special moments that love makes possible. There can be relief, even joy, in events that become the source of sustaining anecdotes.
A friend smiled when reminiscing of her mother’s tendency to repeatedly watch the same movie with the pleasure of a first viewing. Another told of consoling his mother after the death of her nursing home roommate, a lady who had been mute from recurrent strokes. “She was so nice,” his mother said, “and she never complained!”
In our case, Lezlie’s cancer was like a bullet train. In those final weeks, we had many wonderful moments. I would awaken and hold hands with her after giving her a shot of morphine. I marveled at the intensity of the love that embraced us. On weekends we laughed at the antics of our black Labrador retriever; our daughter Kate had taught her to play goalie in a kitchen game of floor hockey. We named Lezlie’s home I.V. apparatus “North Polsky” and “South Polsky.”
Alzheimer’s disease can be accompanied by medical complications that require family members to decide about the appropriateness of invasive medical intervention. When there are conflicting opinions, help may be available in the form of bioethical consultation from a hospital group that specializes in dealing with such situations.
In the setting of dementia, a loving spouse may become irritable in response to the patient’s forgetfulness. Caretaking feels overwhelming at times, as if this new role were expected to define the full range of life to follow. It is important to remember at such times that change is inevitable. As Heraclitus said, “No one can step twice into the same river.”
Some who have a parent with Alzheimer’s disease will become concerned with the risk of inherited genetic risk factors. Testing and genetic counseling did not cause depression or other emotional adversity among the patients in a study that appeared in a recent article in the New England Journal of Medicine. An accompanying editorial noted that circumstances might change over time, as when one who underwent testing encounters the common memory changes of advancing age. (Kane, RA, Kane RL, N Engl J Med 2009; July 16, pp 298-299).
A colleague who recommended the book Still Alice said this of having a father who died with Alzheimer’s disease:
“I am always second-guessing everything I do or don’t do…. I am pretty paranoid when I forget things, usually when I am tired….”
This concern about genetic “contagion” has its parallel in the psychological identification that we may encounter when a trusted friend or mentor develops dementia. One of my former teachers was a dedicated and courageous psychiatrist who helped with a worrisome situation when I was in training. Years later he became my patient.
As his condition slowly advanced, his speech was increasingly interrupted with a search for lost words. There was an intensity to our meetings, a function of deep empathy that we can experience with someone in distress. This empathy was facilitated by “mirror neurons” that are a normal part of neurobiology. After our visits I found myself temporarily stumbling over my own words.
When Lezlie became ill, I would accompany her to her medical appointments feeling that I, too, was no longer well. I felt surrounded by her cancer. I also experienced a struggle in my roles as a medical professional and supportive husband. Our children, too, experienced an unspoken change in important family relations. Their mother and primary caretaker was critically ill. Their father was grieving. The uncertainty of events led to substantial stress for all of us similar to the stress experienced by those who are caring for loved ones with dementia.
I filled the emptiness of Lezlie’s passing in futile search of the vibrant Lezlie that I had discovered when we were 22. I found relief in writing. There were two aspects to this: In recording the full measure of our love, I learned that it would not succumb to ovarian cancer. Lezlie had shared my dream of writing. I felt her with me as I recorded the memories and beauty we had shared. I thought, too, that a candid rendering of my own personal challenge would be of help to others. There is an unwanted normalcy to this passage, but it also is a passage to something we cannot yet envision.
Friends and family were also a great help, but it was the practice of medicine, for me, that proved sustaining. Empathy is greatest when one can relate as if being the patient in need of professional help. I had crossed that barrier and it would never be the same. There was nothing for me to fear.
When pain appears to be forever, we must know that it will yield in time. There is no abridgment to loyalty in such adaptation. The challenge is to discover the pieces of our lives that work and to build a future that allows room to celebrate the indelible love of that very special person.
Fourteen months after Lezlie’s passing I met the woman I would later marry. Within 20 minutes of our first meeting, I talked about Lezlie. Amy shared her own grief about her father, who had died years earlier. She was not put off by my grief but was uplifted to meet someone who knew love. The good times are good, but discovery of beauty in a season of hardship is the greater instructor.
As catastrophic illness takes its toll and distorts our lives, we must know that life is a gift and that the love we have shared in the past is portable as we travel the road to the future.
Owen Stanley Surman, M.D., is psychiatric consultant to the Department of Transplantation at Massachusetts General Hospital and Associate Professor of Psychiatry at Harvard Medical School. The author thanks Patricia Ann Cosimi, R.N., for her contribution to this piece.
The story of Dr. Surman’s personal journey through Lezlie’s ordeal can be found in his new book, The Wrong Side of an Illness: A Doctor’s Love Story (iUniverse). For more information, please visit www.owenstanleysurman.com or Amazon.com.