A recent NY Times article by Catherine Saint Louis revisited a topic I have written about previously–the Caregiver’s Syndrome. Just yesterday one of my patients described her own efforts to step away from that role, for just a while, while her husband was recovering from a serious injury. I applauded her efforts and tried to relieve her guilt for doing so. Intuitively she knew she had to do it. She felt herself breaking down, emotionally first, then physically.
The truth is simply this– the caregiver suffers tremendously from the role of providing care to a loved-one. Now this is painfully obvious to most, but the extent of the suffering may not be. I see this in my patients, their own mental and physical suffering often follows their intense focussed care of a loved-one.
From a personal perspective I saw it take place in my own family. Both my parents are deceased. But in her last years my mother suffered from dementia. She recognized everyone but gradually and insidiously her short-term memory failed. My father was the product of depression/ WWII stoicism. It was not in his DNA to burden his children with his problem. As his children, we were in denial as well. Perhaps we didn’t want to see the inevitable. We (my sister and I) still viewed my father as an iconic pillar of strength. How foolish we ALL were. As my mother lay in bed with Hospice care present, anticipating imminent death, my father crashed. I saw him earlier that morning. Our family were at their home to be present for my mother’s passing. I off-handedly asked him how he was doing. “Just a head cold” he replied. Kissing my mother goodbye, I left their home to play golf. Later that day my wife and sister stopped by, once again to see my mother for perhaps the last time. But there had been a radical change in my dad. He was dying from sepsis. Five weeks in ICUs with pneumonia, congestive heart failure, sepsis, blood clots, pleural effusions……he survived. But he was never the same.
He crashed for one reason. It was clearly the intense emotional stress of seeing the love of his life slipping into oblivion that annihilated his own immune system. Had we all been more aware, we could have intervened. As adult children, we should have stepped forward and assumed more responsibility, regardless of his refusals. We could have insisted that he step back from the daily horror of dealing with someone who asked the same question, over and over again. He could have been relieved of some of the burden–not only of the actual work involved but of the guilt that enveloped him as he gave in to anger, time and again.
The analogy with airflight is powerfully applicable. When the flight attendant tells you to put your oxygen on before attempting to help another…..listen carefully. It will eventually it will apply to us all– if not in the present than assuredly in the future.