Post by: Darra Wray, Founder – My Care Companions
My introduction to family caregiving…
In 1982, my mother’s 80-year-old aunt sold her dilapidated home in the Washington DC area and moved to one of the first assisted living communities in Las Vegas, Nevada. Aunt Jane’s new community offered carefree senior living just a few miles from our house. I was 12.
Aunt Jane was an accomplished artist and a fiercely independent woman. She was thoroughly enjoying her new carefree and independent lifestyle. She was sharing meals, outings, and activities with new friends. She was learning new skills and was even sharing her talents by teaching an art class to fellow residents. Unfortunately, Aunt Jane’s dream retirement ended abruptly when she had a massive stroke that left her paralyzed on her dominant side and struggling for speech.
Aunt Jane had never married or had children. She had dedicated more than 20 years of her life caring for her disabled twin brother and her mother in their final years. And now, she could no longer manage her most basic activities of daily living. She had no children to take care of her nor did she have the financial resources to pay for full-time nursing care. Aunt Jane was an elder orphan. So, my parents converted the downstairs office into a bedroom, made some minor modifications to our house, and installed wheelchair ramps at every entrance. As soon as Aunt Jane’s Medicare covered rehabilitation ended, she moved into our home, and we became her family caregivers.
We saw the best and worst of each other in those early days of caregiving. My mother who had a lifetime of wonderful memories of Aunt Jane wanted her to be loved and cared for by family in her final years. Unfortunately, my mother’s health was failing and much of the responsibility fell to my father who resented having to take care of a woman who was practically a stranger to him. My childhood dream of become a doctor carried me through the first weeks of care, but I quickly realized that caregiving was a round the clock task that could be thankless, exhausting, and backbreaking. I also witnessed the frustration and decline of a once vibrant woman who was trapped for 12 years in a body she didn’t recognize and a wheelchair that she despised.
There was joy and laughter during those many years of caregiving. We told family stories around the dinner table and laughed at ourselves as we learned the art of caregiving. Our initial attempts at wheelchair navigation, transfers to and from bed, toileting, bathing and dressing were worthy of America’s Funniest Home Videos. And, I can still hear Aunt Jane calling “Yoo Hoo” when she was done in the bathroom and needing help back into her wheelchair. We took Aunt Jane on weekly outings and make sure she got a permanent wave, cut and style at the “Lookin’ Good” hair salon every 8 weeks. We made sure that Aunt Jane was present for our important family occasions and celebrations at which she would proudly wear her favorite white suit covered in colorful fruit: yes, fruit. And, my parents even arranged an art show for many of her art pieces at a museum in Las Vegas.
Among these joys were the frustrations of managing personal affairs and affording quality care for Aunt Jane. When caregiving became too physically difficult for my parents, Aunt Jane spent several years in a series of elder foster care homes. When my parents discovered bedsores, they moved Aunt Jane back home and hired a live-in caregiver. And, when Aunt Jane’s care needs expanded to the point where she needed 24 hour nursing care, they made the difficult decision to move her to a state-run nursing home.
35 years later I think back upon this time and am grateful for all I learned from Aunt Jane. She taught me how to be patient and compassionate. She showed us all the resilience of the human spirit. And, we all learned that persistence and practice would help us accomplish even the most difficult of tasks if we worked together.
I have come to realize that caregiving is a thread that has been woven throughout my life. For the last 25 years, I have been a wife, mother, and business professional doing my best to balance the demands of also being a daughter, caregiver, conservator, and executor. I am truly grateful that my husband and best friend, Jonathan, has been by my side every step of this journey. Together, we have cared for and lost three of our parents, and we are still managing through the challenges of settling Jon’s mother’s estate following her death last December.
In the midst of our most recent loss, I realized that despite all of the many things that have gotten easier in the 35 years since Aunt Jane moved into my childhood home, it has actually become much more complicated and challenging to manage the personal and business responsibilities of caregiving and end of life.
As our friends began to navigate the terrain of caring for their aging parents, they began to ask me for advice and help. I realized that I had important and valuable information to share, and My Care CompanionsTM was born with the mission to assist family caregivers with the business of living. My goal is to provide resources, tools, and services that will help family caregivers navigate and manage the business of life … and end of life. When I shared my vision for the new venture with Jonathan, I explained that I may not ever make a dollar, but I know I can make a difference!
Experience is a wonderful teacher, and through this blog, I will share information and experiences that I hope will make it possible for you to spend less time navigating and more time caring for your loved ones. Check back soon for a new blog post from me and my care companions!