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Posts Tagged ‘misdiagnosis’

The Obama administration has declared that November is National Family Caregivers Month. The proclamation declares that family member, friends and neighbors dedicate countless hours providing care to their relatives and loved ones.

When my mother was diagnosed with fourth-stage cancer, I put aside everything that I could and went to take care of her. I was 34 at the time and my mother was 74. She died a little more than 17 years ago. I chronicled my experience in Tea Leaves, a Memoir of Mothers and Daughters (Bella Books, 2012).

My personal journey of caretaking my mother in her final months coincided with my curiosity of learning more about my working-class background. Despite my belief (rooted in strong denial) that she would somehow, miraculously, get better, I knew I was hearing her stories for the last time.

Being the first person in my family to graduate from college put a wedge between me and my background. I was only marginally in touch with my best friend who I had grown up with. We had grown apart. She had married young and was in an extremely conventional marriage to a man (think 1950s). A few short years later, I came out as a lesbian (very 1970s, but this was actually in the early 80s).

I was okay with the fact that I had nothing left in common with the friends I grew up with. But I had a yearning to understand more about my own history. So I read up on the labor movement and asked my mother questions about my grandmother, who as an adult had been a spinner in a textile mill in the Kensington section of Philadelphia:

“When your grandmother was a girl, she worked in a candy factory,” my mother said, slowly and carefully.   I remembered that this was not the first time she had told me this.

“What did she want to do?”

My mother looked at me as if I were insane.

“No one asked her what she wanted to do. She just went out and worked.”

As a result of taking care of my mother in her final months, I learned more about myself. In coming to accept my mother’s mortality, I came to an acceptance that my own life was finite, also, giving me greater insight into the things in life that were important to me. My mother had a keen sense of humor, which undoubtedly got us through:

Increasingly, my mother’s moods changed from minute to minute. On my last visit, she was laughing, telling me that she almost put her straw in the urinal which was sitting next to her water bottle on her nightstand. Then, less than ten minutes later, when the HMO nurse came, my mother told her she wanted a black pill. I was sitting in the room with my mother when the nurse turned to me with an exaggerated expression of shocked concern on her face, and said, “Did your mother tell you she felt like this?” I shrugged. My mother, in moments of excruciating pain, had told me she wanted to end her life. But there was no legal way to do it. A black pill, or suicide pill, was illegal in Pennsylvania and almost in every other state. When my mother suggested that I could put a plastic bag over her head, all I could do was suck in my breath.

click here to read the entire article in The Huffington Post — including practical caregiving advice

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read the entire piece in The Huff Post

It was 2008 and I heard a buzzing all around me. I had gone to the doctor and was misdiagnosed as having dementia but I discovered later that I had had a nervous breakdown. I said to my grown daughter, ‘What is this thing called Obama?’ and she replied, ‘Obama is a black man and he is running for president, Mama.’ ‘Oh my Lord,’ I said. ‘My mama had told me this day was coming and now it was happening.’ Then I realized that I had to pull myself together. I had to watch this historic moment take place. -Jean, 77

Jean, a 77-year-old black woman, uttered those words in a room full of about 20 white people at a senior center in a predominantly white working class neighborhood in Philadelphia. I was there to do a reading from my book Tea Leaves, A Memoir of Mothers and Daughters (Bella Books, 2012), and then to lead a discussion and conduct a writing exercise. I looked at Jean. My mother’s name was Jane. She was 74 when she died and she had been misdiagnosed as having arthritis by an HMO doctor who prescribed Extra Strength Tylenol. My mother found a new doctor but it was too late. She was correctly diagnosed with fourth-stage cancer of unknown origin and six months later, she was dead.

It has occurred to me, as I go around reading from Tea Leaves and listening to people’s stories, that in writing about my mother, I have not only written her story and my story and my grandmother’s story. I have touched into a deep, mostly untapped vein of writing the story of many women — and men — whose lives are often overlooked not only in literature, but by society in general and by the medical system in particular.

Another woman in the group talked about being misdiagnosed and, as a result of her untreated illness and the wrong medicine that the doctors in the hospital had given her, she went down to 87 pounds and nearly died several times. She got better and then felt she had wasted her life up until that point — in pettiness, in pursuing things that didn’t matter.

The group met in a 55-plus senior center, but most of the people in this group were in their mid-seventies. I have taught creative writing through the years to children, teenagers and adults of all ages, but have always recognized that my older students are the ones with the best stories to tell. Everyone in the room was brimming with stories — one man wrote about being placed in an orphanage at age 4 because both of his parents died of tuberculosis. He then went on to serve in the military but afterwards was denied entrance to college based on low math scores. An extremely fit woman in the group — who works out every morning in the center’s gym — wrote how her husband became frail and ill and how one day she came home to find that he had not been able to get out of his chair all day. She gradually became his caretaker. The hardest part was learning how to be the strong one and not let her grown children know how terrified she was.

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The Lovett Library Memorial GardenMy friend Maria Fama and I were recently talking about libraries.  Both us are writers and long-time friends.  Of all of our accomplishments through the years, we are both really proud of the fact that our books can be found in The Free Libary of Philadelphia.  There are presently five copies of my book Tea Leaves, a memoir of mothers and daughters (Bella Books, 2012) in the library system.  One copy is at the Lovett Memorial Branch, and others are at Central, the Walnut Street and Indendence branches and the Joseph E. Coleman Northwest Regional Branch (in Germantown).  One of these copies of Tea Leaves is being transferred between libraries and the last time that I checked a copy was on reserve.

author Janet Mason standing outside Lovett Library

When Maria and I talked about the fact that libraries are so important to us because when we were working class kids on our way to growing up and becoming writers, the library was a sanctuary for us.  I don’t have to tell you about the budget cuts affecting libraries in Philadelphia (and elsewhere) and the signs about limited hours on the doorways.

Without libraries, there would be fewer readers and most definitely fewer writers.  There would be more violence in the streets and less learning.  Can we afford that?

Janet Mason talking about Tea Leaves at Lovett Library

Recently, I did a reading from Tea Leaves at the Lovett Memorial Branch (my local library) of the Free Library of Philadelphia.  I invite you to see the pictures and also to read the article that was written in NewsWorks about the reading.  We had a lively discussion after the reading about our mothers, grandmothers, fathers and grandfathers, and the people’s history of Philadelphia. I credited the city as being a partner in my writing process.  The library is  a partner, too.  It has been there with me through all the years.  Let’s make sure it stays with us.

The Lovett Library sign

Madeleine and Barbara at the Lovett Library in Philadelphia

from NewsWorks article by Jane Shea

How does one process a mother’s mortality and honor her life, her history and her influence? Author, Janet Mason, found the answer in her writing. The resulting book, Tea Leaves: A memoir of mothers and daughters, documents that journey. Mason shared readings from Tea Leaves in her Mt. Airy neighborhood twice this past week at the Lovett Memorial Library last Tuesday and at the Big Blue Marble bookstore on Friday.

Mason’s mother, Jane, was diagnosed with late stage cancer in 1993, after being initially misdiagnosed. Mason did what comes naturally to an only child – she assumed the role of primary caregiver. She had six months left with her mother. In that time, Mason not only handled the “immense responsibility” of caring for a terminally ill parent, but also recorded those experiences, family stories, memories, history and learned how they shaped three generations of women.

Mason who describes her mother as a atheist, feminist, hopeless realist and an amazing storyteller always encouraged Mason’s writing. “I got a lot of validation,” she said. Through her published poetry and literary commentary on This Way Out radio program, Mason has pursued her creative dreams in a way her foremothers never could, making good on the advice of an early therapist who once told her, “You’re the only one who can write the story about your life.”
read the entire article

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How Caring for My Mother Brought Me Into the LGBT Caretaker Club: A SAGE Experience

read the entire piece in The Huffington Post

When my mother became terminally ill, I went home to take care of her without a second thought. I worked as a freelancer at the time, so my work life was portable. As an only child I had no siblings to turn to (or to fight with or resent later). The fact that I am a lesbian was never an issue with my parents.

If anything, having to “come out” only made us closer. In my early 20s I was suddenly in a situation where my parents and I had to work through my declarations of being a lesbian and everything that meant in the early 1980s. I come from a background — working-class (no complaints) and British (stiff upper lip) — where we rarely expressed our feelings. In many ways my coming out as a lesbian was an extension of my mother’s feminist politics. (When I told them I had something to tell them, her guess was that I was either gay or pregnant.) My father did struggle temporarily with the fact that I am a lesbian, but after I came out to my parents, he told me for the first time that he loved me.

However, as a lesbian caretaker of my terminally ill and elderly mother, I became part of a trend that I came to consider after writing Tea Leaves: A Memoir of Mothers and Daughters, recently published by Bella Books.

Out and Aging,” a 2006 report, found that 36 percent of LGBT boomers are caring for aging parents. One significant reason that a higher percentage of us care for aging parents than heterosexuals is that we are less likely to have children to care for. Even when we are partnered, we are often perceived as “not having families.” This was not the case with me — both of my parents loved and accepted my partner. My mother left a letter to be read after her death, entitled, “A letter to my unexpected daughter-in-law, Barbara.”

It could very well be that people in the LGBT community (which crosses the spectrum of ethnicity, culture, and class) inhabit the role of caregiver in a spiritual sense (much as gays, lesbians, and transgender people inhabited the role of the two-spirit or “berdache” in many Native-American cultures).

It is true that there is a youth culture in the LGBT community (reflected in the gay media and consumer culture), but at the same time we inhabit the role of the “outsider” in society and may perceive the wisdom of elders — both family members and our friends who have become family — as important.

read the entire piece in The Huffington Post

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Health Reform, The Supreme Court And What I Learned From My Mother

read the entire piece in The Huffington Post

As the Affordable Care Act worked its way through the courts in the past three years, I began to reflect on how it might have affected my own life and that of my mother, who died of cancer in 1994. After much deliberation, the Supreme Court just ruled that the Act is constitutional.

Like most people, I, too, was confused about the Act but I knew that it would benefit me along with millions of others. People like me and my mother need a health care system we can believe in — something better than what was in place.

The medical system is mostly a profit-making structure that overlooks the most vulnerable sectors of our society — especially older women.

I was a witness to this when my mother was dying from fourth-stage cancer that had metastasized to her bones. She initially became aware of the cancer when she woke up with a crushing pain in her sternum. Her doctor at a health maintenance organization (HMO) diagnosed her with arthritis and suggested she take extra strength Tylenol. He refused to give a referral to a specialist.

It’s often said that women become invisible after the age of 45. We also become invisible to the medical system. Older women are more likely to have complicated medical issues and are more likely to be low-income, having spent fewer years in the workforce because of raising children and caretaking elderly parents.

The Patient Protection and Affordable Care Act has already been helping the elderly population. As of January 2011, Medicare has been providing no-cost screenings for cancer, diabetes and other chronic diseases. At the same time, the Affordable Care Act established a new Center for Medicare & Medicaid innovation that tests better ways of delivering care to patients.

These two provisions alone are evidence that the healthcare reform has begun to improve the medical system — both in terms of preventive treatment and in research. Medical treatment is likely to become less fragmented (and profit-driven) and more transparent. As a result, people will get better treatment and are less likely to fall through the cracks.

If ObamaCare had been in place in 1994, the year my mother died, it may have made a difference. However, my mother also needed the one thing that cannot be legislated: trust. Her experiences as a nurse, as a working-class person and as a woman taught her not to trust the medical system. In many ways, this distrust was generational. My grandmother, at the end of her life, had several heart attacks and was hospitalized in a nearby inner-city teaching hospital. When my mother went to visit, she found interns prepping her mother for a gynecological exam. She stopped them; my grandmother, who was 77 years old, died a few days later.

read the entire piece in The Huffington Post

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