One of the most frustrating parts of this experience was realizing the lack of communication between medical personnel. Of course, I know this exists because I am in a medical profession. But this was the first time I saw the effects of it first hand: of having to repeat the same story on the phone over and over again, of one doctor “deferring” to another doctor, who then deferred to another. I look back now and wonder how folks handle this who do not have a health professional in their inner circle who can run interference and ask the right questions. Liz would sometimes start the phone calls, in an attempt to maintain her independence and control, but would eventually hand the phone over to me when the convoluted conversations were too much for her.
Ten days before Liz passed away, I had planned to take her to the mountains overnight for what I knew would probably be the last time. We were unable to go – she was short of breath and I knew she would not do well in altitude. Once again, I was in the horrible position of having to tell her something she didn’t want to hear. Our relationship had changed, it was suffering under this stress. The morning we were supposed to leave, my “health professional-self” had to keep fighting back the “friend-self.” The friend-self wanted to ignore the reality of her shortness of breath. The health professional-self with a heart of stone told my friend-self to go away. Of course my brain won out over my heart, but our relationship suffered at times like these. It was more painful than I ever would have imagined to have my dearest friend look at me with derision in her eyes and begrudgingly tell me that she understood, in a tone of voice that seemed to say that I was just trying to deprive her of happiness.
Within a few days Liz heard from the orthopedic surgeon who felt one of her fractures from the bone cancer should be fixed. We had already scheduled an appointment with her primary doctor (her oncologist deferred…) to address her many medications and her increasing confusion. Was it the brain tumor? Was it the meds? No one wanted to tackle that question, it seemed. Now the appointment with the primary care doctor had been delayed because the surgeon wanted to operate. Before I knew what was going on she had gotten pre-op testing done, yet no one, it seemed, was aware that she was having trouble breathing! Fortunately, the surgeon needed the final release from her primary doctor, so I met Liz and Gina at his office late in the day.
Within half an hour he had sent us to the emergency room because of her terrible respiratory condition. That was at 6 p.m. Liz was eventually admitted to the cancer ward and Gina and I left the hospital at 3 a.m. By three o’clock the next afternoon Liz was in the intensive care unit.
Little did we know that when we wheeled Liz into the hospital the previous evening, that it would be the last time she would feel the fresh, cool San Francisco air that she loved so much.
Written by Mary Horton Sondag
Mary Horton Sondag, BSPT lives in Lafayette, California with her husband, Alan, where they raised their three sons. She is a physical therapist, specializing in geriatric care in the acute, rehab and home settings for 30 years. Caregiver training is an integral part of her daily work in all settings. She enjoys travel, quilting, writing, singing and sometimes just doing nothing at all!
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