Never one to choose the easy path in life, I made the decision to become the primary care provider for my parents, and it was one of the most challenging choices I have ever made. In the spring of 1998, I was living in Los Angeles and working at NBC studios on an Aaron Spelling show when I received a phone call from my mother telling me that my sister and only sibling had been diagnosed with stage-four inoperable lung cancer.
Instinctively, I knew that this was a turning point in my life. Suddenly, with no preparation, I found myself traveling through uncharted territory. Although I did not know it at the time, my personal evolution would be greatly impacted as I assumed the role of care provider and advocate for my elderly parents.
I left my profession as a hair-stylist and make-up artist in films and television and returned home to St. Louis, Missouri. It was an incredibly difficult transition, and I felt completely uprooted and thrown into a chaotic situation in which many adult children find themselves when their parents can no longer remain independent. After the deaths of my sister and father in 1999, eleven months apart, Mom and I were on our own with no family support of any kind. After a series of mini-strokes that affected her hearing and balance, Mom's health declined. She was diagnosed with breast cancer for the second time and had a mastectomy, which eliminated the need for chemotherapy and radiation and the accompanying ordeal of both.
As my mother’s advocate, I assumed all the responsibility of protecting her. The elderly are extremely vulnerable and there are unscrupulous people who target them for financial gain. I witnessed situations that put me on guard against scams and made me aware of disreputable home healthcare agencies that employ nursing assistants who are often inadequately or improperly screened. On two separate occasions, my mother was subjected to an incompetent physical therapist who put her safety in jeopardy; fortunately, I was there to intervene. I was also fortunate to find a certified nursing assistant (CNA) who was responsible, caring, kind, dependable, and a true blessing to us.
As it became increasingly more difficult for me to work full time, our financial situation grew stressful. A private room in a nursing home can easily cost $87,000.00 per year, and I could not afford that or the estimated $42,000.00 per year for assisted living. The astronomical cost of long-term care is prohibitive for most seniors, and a common predicament is that many seniors outlive their savings. I was unwilling to compromise Mom’s safety and wellbeing by putting her in a mediocre nursing home.
My grandmother lived in a nursing home for fifteen years, and Mom was Grandma’s advocate, consistently ensuring that she received good care. I will always remember a situation over which even Mom had no control. A male orderly was caught molesting a female patient who suffered from dementia and shared a room with my grandmother. I remember how horrified Mom was and how guilty she felt for not having Grandma in our home, even though she required 24-hour custodial care. This made a profound impression on me that impacted my decisions when caring for Mom many years later.
I firmly believe that we learn by example and my mother, Betty, was my teacher. Mom was very well adjusted and had an amazing internal fortitude. She was the definition of altruism, selflessness, kindness, generosity, and compassion. My parents were married for 48 years, and my father suffered from bi-polar disorder for most of his life. Dad worked as an electrician for 39 years. He was a good provider, smart, perceptive, and difficult. Life was not easy for either Dad or Mom. There were many times when Mom was unhappy, but she was always strong and courageous and never complained.
Mom and I had a close and loving relationship and she was always there for me. When I was 15 years old, I told Mom that I was gay, and she accepted me completely and loved me unconditionally; I could not have asked for a better mother. These experiences influenced my decision to keep Mom at home with me. I knew that she would not receive the same level of care in a nursing home that I would provide for her.
When most people think of care providers they assume that it is usually a woman’s role. As a society, we consider it natural for women to become care providers, yet somehow we do not have the same expectation for men. Many male care providers keep their role a secret because they fear being emasculated by women, and this phenomenon exists in our society even though men comprise one-third of all care providers in America. In my own personal journey of caring for my mother, I realized that some women think it is not manly for a man to care for his mother. This bias is deeply rooted in sexist gender roles and expectations. Human evolution is a slow process and we are gradually evolving from our traditional concepts of male and female. With regard to healthcare, the sex of the care provider is totally irrelevant and we must make progress in this area.
In our society, the emphasis should be on creating a kinder and gentler world, where men share nurturing responsibilities with women. The new definition of masculinity must include sensitivity and kindness, and kind men must not be perceived as weak but as emotionally strong. The experience of caring for Mom for twelve years until her death in July of 2011 at the age of ninety-four, changed the way I thought of myself. The role reversal from child to adult to parent challenged me to assume the responsibilities that my parents had once fulfilled for me.
There is no other way to learn but to experience the adversities of life that transform a person’s perspective of reality, and I am grateful for my journey. I might have continued on my path of self-absorption and ego-centered living but, instead, I now have greater empathy, patience, emotional maturity, and a rich spiritual disposition. Had I not cared for my parents, I would have missed an incredible life experience. Through all the ups and downs and times when I thought I could not go on much longer, I found the strength to persevere.
I am one of 78 million baby boomers, 10 thousand of whom are turning 65 every day. How much longer will our social, economic and healthcare system be able to sustain what is already in crisis? The U.S. Dept. of Health & Human Services reports that people who reach 65 will likely have a 40% chance of entering a nursing home. As I contemplate growing older, I wonder, “Who will be my advocate when I can no longer make decisions for myself?” I dread the loss of control over my own life, and I already have my Advanced Medical Directive in place: no life-support, no resuscitation, no heroics, and access to end-of-life choices. Death is inevitable, and I am not afraid to die.
In my mom, Betty, I had an excellent role model, a best friend, and an exceptional mother. The fulfilling process of my mid-life reinvention was made possible by adverse and unavoidable situations, but I sincerely believe that the best thing I have ever done in my life was to become a care-provider.
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