Dear Dr. Neimeyer,
My father had schizophrenia and I am so proud of how he managed his illness. He will continue to be an inspiration to me and I do direct my son, who struggles with mental illness, to grandpa’s example. My father found that walking cleared his thoughts and decreased the symptoms of depression. My Dad walked miles every day. My Dad’s greatest fear was losing his ability to walk. Sadly, that became a reality for him the four years ago. We did not get a diagnosis as to why he lost his ability to walk until June two years later. Chronic Inflammatory Demyelinating Polyneuropathy. Unfortunately, the diagnosis came too late. What I am really struggling with is he took the initiative to go to the hospital during a long holiday weekend four years ago. He was suicidal and he needed to know why he was having trouble walking. My husband and I drove two hours to that hospital and we were reassured by the hospital staff that they would keep him until the team could assess him the Tuesday after the long weekend. Unfortunately, they discharged him the holiday Monday before the team was back to assess him. My Mom and brother and I are really struggling with this. His next admission to the psych unit was that fall, and the psychiatrist was wonderful, explaining to my dad and the family that his inability to walk was not due to the side effects of the meds, and the CAT scan of his back did not show any reason why he could not walk. He suggested my Dad see a neurologist. Unfortunately, the hospital did not have a neurologist, and due to other health issues we were not able to get my Dad to a community neurologist until A year later. I am really struggling with the “what ifs”. What if he saw the psychiatrist during his admission first admission four years ago and we were given that information then? Would he have gotten the diagnosis sooner? Would it have been life saving for him to have received the IV IG sooner?? My Dad was someone who had a heart for others suffering with mental illness. He would walk to the hospital and sit on a bench and feed the birds. Apparently, mental health patients at the hospital would visit with my dad on that bench and he was a support to them. I keep thinking that I need to follow-up with the hospital regarding that admission four years ago. Not really to complain but rather in honor of my father, to explain the importance of that admission and to hopefully help other seniors struggling with other health issues who also have underlying mental health issues. I feel like I may not have peace unless I do follow through with this. What do you think?
Nobility comes in many forms in life, perhaps especially when we witness others who surmount or manage great challenges across a lifetime, as it seems was the case with your father. His ability to live with chronic mental illness, but to do so in a fashion that provided inspiration and support for many testifies to the reality that each of us has something unique to offer, when we live responsibly and with compassion. I hope that sharing this vignette of your father’s life helps convey this meaningful message to many readers.
How tragic, then, that your father might have died of what was an avoidable and undiagnosed condition. Medicine is as fallible as any other human endeavor, and the venal realities of contemporary healthcare institutions ironically can make it more so. A death under these conditions of ambiguity leaves many questions unanswered, and often prompts surviving family members to engage in what psychologists call “counterfactual thinking,” meaning that they-like you-may find themselves “rewinding the tape” of events associated with the illness, and imagining different possible scenarios that could have led to a better outcome. Often this takes on the form of assigning responsibility for critical actions (or inaction) to oneself or others, stoking the fires of guilt on the one hand and anger on the other. Yet in their extreme forms, these emotions may simply contribute to depressive self-criticism in the first instance or a dynamic of accusation and defense in the second. In a sense, both of these alternatives compound the problem of the death rather than resolve it.
Fortunately, your closing thoughts suggest a way between the horns of this dilemma, one that collaborates with hospital representatives rather than one that confronts them with their failure. As the issue of the unavailability of the diagnostic team and the premature discharge seems to have been more administrative than medical in origin, perhaps the appropriate person to contact would be a patient care representative who can hear your complaint, and ideally respond constructively to it. Improved care for those with similar conditions would seem to be something your father would have appreciated, just as any other support you can offer to people with mental illness-either directly or through an advocacy or service organization-would honor his legacy to compassion and engagement.