Tonight's picture was taken in July of 2009. About a month before we learned that Mattie's diagnosis was terminal. In this photo we thought our goal was rehabilitation. Thinking that Mattie would be able to return to school that Fall. We couldn't have been more farther off base!!! I honestly do not know how Mattie found the energy to do physical therapy when he clearly was managing a very aggressive cancer. But that was the beauty of Mattie. He taped into incredible inner reserves. In this photo, Mattie was pictured with Anna, his physical therapist. Anna was trying to inspire Mattie to walk again. Notice the whoopie
cushions all along the floor. These toys were good distractions as Mattie would focus on getting to each one of them. Mattie couldn't wait to step on each cushion in order to make a horrible sound. A sound that would get a reaction out of all of us.
Quote of the day: Your absence has gone through me Like thread through a needle Everything I do stitched with its color. ~ W.S. Merwin
I got up early today for an 8:30am appointment with my urologist. This woman has been working with me since 2009, after Mattie died. Next year, is our tenth anniversary together. Mind you, I see her every three months. So we have gotten to know each other over the years. Today when she entered the exam room, she seemed distraught. I learned that her dad has Alzheimer's disease and is now living in a nursing facility because her mom, who was caring for the dad, got a stroke. She believes her mom got a stroke from all the heavy duty caregiving. Ironically this seemed like a novel concept to her as she didn't seem to understand the connection between physical and emotional stress from caregiving on one's health. A subject I know all too well, given that this was the subject matter of my dissertation and I also lived the experience as Mattie's full time caregiver when he endured cancer treatment.
What she was talking to me about today, wasn't the physical issues! Those issues just put the conversation into context. But what she needed to vent were the psychosocial issues. As she is now working around the clock between her medical practice and balancing the care of her parents. Her mom moved in with her and while she is working, she is paying for an aide to support her mom. Nonetheless, she explained the the exorbitant cost of the nursing home and her mom's home care. I listened, but I already knew the answer. Without long term care insurance, getting any sort of custodial support for a loved one is incredibly costly. Her dad was a famous trauma surgeon, and in all reality she admits that whatever money he had will be completely absorbed in their care. A rather sad commentary. But what she said to me that caught my attention was.... now I know how patients feel. EXACTLY! If you interface with the medical system, one thing you learn ASAP is that everything has a price and depending upon insurance, you will either be able to afford care or not.
Mind you I do not wish any ill on her parents, but I have to say something is very wrong with medical education. Why must a doctor learn about the psychosocial ramifications of illness through such a personal experience? Doctors seemed to be trained to understand numbers, data, and the science of illness, while missing aspects of the whole person coming before them. They aren't trained to listen or reflect on how an illness or disease impacts one's daily quality of life for the patient and family. That is until they experience illness first hand. Then they unfortunately realize how helpless they really are, how their medical knowledge is not going to improve the situation, and in turn they get an up close and personal experience with powerlessness. Welcome to the world of a patient. Though my experiences are with cancer, the psychosocial ramifications of any long term or life threatening illness are similar. I have a feeling she is beginning to see this, which is why she felt she could talk to me today.
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