This month we share a very personal story by our guest writer Robin Curry. The story of Robin’s mother’s death is heartbreaking and brutally honest about the lingering sense of betrayal she feels towards the medical system she trusted.
She reminds us of the importance of finding the right doctor and team to help our loved one through vulnerable times of need. A doctor and team who knows us, has time enough to listen and to care. Hopefully this team includes a nurse care manager who can coordinate care and make sure the system is working the way it’s supposed to.
Robin speaks as a voice for many who have lost a loved one and we share her story with you to help raise awareness about the importance of having the right team in place to advocate for quality of care, when it is needed most. We thank Robin for her courage in sharing with us this month. Here is her story.
“My mother was brilliant: skipped two grades in school and took learning very seriously. She was a poet and could make a rhyme out of a grocery list. She was smart at math the way some people are born to be smart at math, she could type on a manual typewriter as fast as a teenager can keyboard. She became a beautiful, stylish, successful Californian in the 1930’s, with a career that lasted over sixty years. She instilled in us her love of writing and reading.
She was a court reporter, and knew the language of stenography and the vocabulary of the medical world. She was able to transform herself into a leader in a formal gown, stunning royalty. She spoke well before large crowds, although she was shy.
When life gave her cervical cancer at 50, she didn’t slow down for long. She continued to live and to work hard.
When she was in her sixties, she began a career with the Federal Government. At seventy, she worked for the City of Del Mar. She had seven grandchildren and three great grandchildren, but still she worked, driving a 90 mile round trip to work five days a week. She did all she did with grace, humility and willingness, and without complaint.
During a physical in her seventies, Kaiser found an anomaly in an x-ray and did no further testing. Doctors opened her chest to find a benign lipoma, and I am convinced that the trauma of that surgery led to what happened next: Parkinson’s. That diagnosis would have made a man cry, but my mother essentially ignored the symptoms as they gradually took her balance, her steady hands, and her ability to drive. She quit driving voluntarily as her confidence waned and she became concerned about the safety of others.
She rarely complained about any of it, but as her ability to work was diminished, she wrote a story of her life before she became unable. She loved email (a new thing in the 1990’s) sending jokes and keeping in touch with her friends, still learning. She began a singular and significant relationship with a child, my daughter Cathryn, that would be the most important friendship for both of them until she died.
My mother considered her to be her greatest gift—her own personal student to teach how to read, and swim, and make divinity. They had sleepovers and played cards. As my mother’s ability to walk and use her hands became more and more compromised, Cathryn would help her with the basics. We convinced her to drink more water than ever because her bowels had slowed down. We shopped for her and brought her meals. Mom still wanted to live in her own house, although we tried to persuade her to move in with us. When Cathryn started school, she spent the hours after school with her grandma. Every morning Cathryn would call grandma to make sure she was okay.
One morning after her 86th birthday, my mother didn’t recognize her best friend’s voice on the phone. Cathryn and her dad rushed over and found grandma confused. Doctors at the hospital determined she had had a stroke, with severe aphasia. She didn’t remember our names. One evening when Cathryn and I were visiting her in the hospital, she said “I really like you two, don’t I?”
Because of Parkinson’s and choking possibilities, the hospital insisted on spooning some kind of clear jelled water into her mouth. She hated it and refused it, so we sneaked her sips of water. She spent a few days in a skilled nursing facility next door to the hospital. No one spoke English at night and we felt the need to have some member of the family there at all times.
The care was nonexistent.
Her bowels became impacted and she was rushed to surgery. At 86, a bowel obstruction can kill you, or the surgery will. She was made to walk the day of the surgery. She saw angels in the corners of her room. She lasted a day or two more and then died from “myocardial infarction” according to the death certificate. If I had been filling in that line, it would have said: “Negligence. Unapproachable doctor. Staff unaware of or indifferent to patient’s wishes, resulting in unnecessary surgery.”
I have lost some of the anger, but I am intensely afraid of hospitals. I ask questions and I’m not content with dismissive answers. But it is still so hard to do alone.”
Editor’s note: With professional caregiving assistance and the support of a nurse care manager, this story might have had a different ending. To have someone in your corner to ask the right questions and facilitate communication with the medical staff, is so valuable to the family and worth whatever it costs.
You could say Robin’s mother was 86 and had a long life. You could also say, with proper care she might have been with her loved ones longer.