As an occupational therapist working with people with a variety of illnesses and injuries for over two decades, I have had a lot of experience writing goals for patients and evaluating the strengths and weaknesses specific to each individual’s diagnosis. Early in my career, I was told to suggest to families of patients being treated after catastrophic illness or injury that they show a photograph of the patient to the staff working with that person. The idea behind such an idea is to have the picture of the patient from days of better health there to serve as a reminder for every health care worker who entered the room that the patient lying in the bed or sitting in the wheelchair needing assistance was a person, an individual with a story of his or her own, someone who mattered and who deserved to be cared for with dignity and respect.
In the fall of 2010, though, something happened in my life that changed the way I perceived many things, including the way I viewed intervention needs for individuals in need of health care services like occupational therapy (OT) and other medical and rehabilitative interventions: my dad was diagnosed with Glioblastoma Multiforme, or GBM – stage IV brain cancer.
very active, fit man who was two weeks short of competing in an Ironman triathlon, who worked full-time as a commodities broker, and who regularly traveled with his wife, his family, and his friends, to a person who could not sit up in bed by himself, who could not dress himself, who could not drive or be left alone. As one of my father’s primary caregivers during his illness, along with the changes in my dad came changes in me, as a person, as a daughter, and as a health care provider.
During the time my dad was sick, my family saw some medical professionals who were compassionate and helpful – and we saw some who weren’t. Some of the health care workers on my dad’s team seemed to go out of their way to assist him and sometimes even the rest of us who were there with him, but others did not seem to consider him as an individual and still others appeared not to understand his prognosis or to recognize the support that we were so desperately seeking. Many of them seemed to be doing what they had been taught and what they felt was right - but still there was something lacking. Something important, something that would have helped my dad and my family.
As someone on the inside of the situation, I learned how important it is to acknowledge a patient’s story and to involve him or her and the family in every step of planning for treatment and beyond. My goal for this book is to help others gain an intimate view of what often goes on behind the scenes in the event of catastrophic illness or injury, with the ultimate goal being to increase awareness of the significance of providing patient-centered intervention for every person with a life-changing illness or injury.
I plan to blog my way through writing this book, editing and adding to what has been shared already on this blog about what happened behind the scenes during my dad's illness. I welcome comments and questions along the way. My goal is to make available both a hard copy and an e-book when the project is finished, polished, and put together, with approximately 20% Bonus Material to be included the final version. Thank you for reading!
Contact me by email at Stephanie.JMCP@gmail.com