This piece reveals many of the difficult moments that we faced as a family and as a couple during Stewart's illness. When I first spoke of these things to a radio producer, Mary Beth Kirschner, it was wonderfully cathartic to have someone else witness the very hard things we had to bear.
However, I had a lot of trepidation in letting this air publicly because I felt that I had "failed" this experience in many ways. I grieved that we didn't achieve that "transcendent" experience in our final days together as the first neurologist we consulted had led us to think was an achievable goal in such cases. I was afraid that this would reflect badly on us as a family and/or as individuals. If it was true, as Stewart had said, that we had been given the gift of this time before the certain end, then somehow I had squandered or mismanaged it.
Yet, I know that we are not so different from most families or couples. I know that how Stewart acted or failed to act was a result of forces he couldn't control for the most part, and the most painful part of this was losing the warm, funny, lovable man in my life, my children's father, long before his body was finished off by the cancer.
How I responded was as one overwhelmed with the grief of the diagnosis, trying to manage the mountain of medical information — and as the parent who has to keep the household running, part of it while working full time. This is not to say we didn't have help. We did — a wonderful community from many aspects of our lives came together to make the whole ordeal bearable, and their love and care restored my faith in God. And even with all that, what transpired in the end was not what I had envisioned that the end would be like — not by a long shot. In the last few weeks of his life, he went from being paranoid and throwing dishes across the hospital room to a state of semi-coma in the space of a few days, with barely a conscious moment in between to say a heartfelt good-bye.
In retrospect I also felt the pressure of our societal reluctance to talk about mental illness/behavioral issues, even if they have an obviously organic cause, In his case it was a double whammy of medication and the effects the tumors had on his brain. When I finally went online and found a brain tumor chat room, I realized that stories like ours were hardly unusual, that his behavior was not uncommon. And I was emboldened to push the doctors for some relief.
There were and probably still are major gaps in our health care system in how we support families facing these diagnoses. Hospice was wonderful but they were there only for the last two weeks of his life. All of the medical professionals we dealt with: neurologists, neurosurgeons, radiologists, nurses, speech and physical therapists and more, did their jobs well, some brilliantly and many with great compassion. However, as we were passed from one phase of treatment to the next, there was not the continuity of care and resources for help that would have been a boon to us. Often times when a problem arose, I just wasn't sure who to call first.
I believe there are more resources now to help families cope with these problems particularly in the developing field of palliative care. But it would also be such a relief if health care professionals not only warn of possible side effects, but have a plan in place for remedying them. Further, it is incumbent on the health professionals to not ignore the behavioral aspects of treatment, especially in illnesses involving the brain. It is immensely difficult to tell a doctor in front of your loved that they are imagining things that didn't happen – especially if your loved one doesn't believe you, and in fact, Stewart rarely believed that his behavior was unusual.
Private consultations with the family/caregivers should be the norm, not an exceptional event happening only on request. I learned in the end that many of the reactions Stewart had to medications and the tumor, both behavioral and physical, were predictable. But sometimes he would be unseen by anyone for weeks at a time because we were not in an active phase of radiation or chemotherapy.
I decided to make these painful memories public because I really want others who might be facing a similar situation with a loved one to know that they can banish any shame or hesitation in being open about their struggles, and to encourage them to doggedly pursue the help they need and deserve. Thank you for your interest in our story.