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.
My partner Barbara, a main character in Tea Leaves, was a caretaker for her own mother and when I asked what her thoughts were on caregiving, her advice was practical. She mentioned that people should get as much help as they can. Many states provide caregiver support services, including respite care.
The White House's declaration of November as National Family Caregivers Month mentions that Vice President Joe Biden's Middle Class Task Force focused on the importance or investing in respite care, counseling, and training for individuals who serve aging Americans.
It is important for the caregiver to take care of her or himself first. In my own situation, I became so overwhelmed with taking care of my mother that I ended up becoming confused on my way to my mother's house, and turning onto the off-ramp exit of I-95. Fortunately, the off-ramp was devoid of cars and I was able to remedy my stress level by taking several days off. But Barbara is right (as usual) -- it is important for caregivers to take care of themselves. It is not unheard of for caregivers to die of some stress-related disease before the person they are caring for.
I have always cared deeply -- about human rights, about the world we live in, about feminism and LGBT rights in particular. In Tea Leaves, I reminisce that volunteering at an AIDS hospice prepared me for taking care of my mother when she became ill. The personal is political -- and everything is connected. The Obama administration understands that.
You can learn more about Tea Leaves: A Memoir of Mothers and Daughters here.
For more by Janet Mason, click here.
For more on caregiving, click here.