Being a family caregiver is more than just handing out medicine and doing things for a loved one who needs care.
It’s important to help loved ones feel supported when their self-confidence, self-control, and self-motivation begin to flounder. I strongly believe in Whole Person Empowerment. What is that?
It’s nurturing the body, mind, and soul during a crisis. By helping a loved one remember that even during challenging times, where there is life, there are meaningful experiences to have, love to share, and joy to seek, he or she is more likely to be invested in working towards a positive outcome, even if a prognosis is uncertain.
I learned early in my teaching days that a hospital can be a scary place for a child who is alone in a room for hours on end. I often sat with children while they underwent medical treatments like chemotherapy and dialysis. Some children needed to keep up with their lessons and homework while they were in the hospital. I sometimes helped them to complete assignments. I also played games, worked on craft projects with them, and sometimes entertained them with puppets and stories when they had some free time and needed to feel like kids again.
One of my favorite things to do was to engage in play therapy with them. It helped them to reveal some of the frustrations of being patients in a world where doctors and nurses and technicians were in control of their days. You can learn a lot about the impact of illness on a person when you catch a glimpse of the experience through the eyes of a child. The lack of social interaction and the constant need for medications and procedures can take its toll on the soul. Children need to escape the stress of being patients, to put it away for a while and forget about it. Isn’t that what adults also need when they’re challenged by health issues?
I later worked with adult patients in a psychiatric admissions hospital, disturbed adolescents in residential care, and special needs children with a variety of learning disabilities, behavioral issues, and disorders, including autism.
These experiences were invaluable when I was a caregiver for my mother for ten years and for my father for five years.
Some of the many challenges my mother faced in the decade that I was her caregiver included multiple major surgeries, COPD, two heart attacks, and finally lung cancer. Dealing with the neuropathy from chemotherapy and the diabetes that required daily insulin shots were challenging for her. But it was the overwhelming physical, mental, and emotional toll from the lung cancer that had the greatest impact on her. She was devastated by the weight of all that. And sometimes, the one thing she needed most was to escape thinking about what was lurking around the corner for her.
My mother loved to travel around the globe. When she was no longer able to do that, she felt deprived of the one thing in which she found her greatest joy. That’s when we began to travel virtually, through TV shows with Samantha Brown and Ian Wright, films, and other virtual experiences. She could sit in her recliner and enjoy herself again.
One of my favorite memories while she was going through cancer treatment was the night that she, my father, and I watched The Weeping Camel and saw a glimpse of Mongolia that we never would have imagined for ourselves. Roger Ebert, her favorite film critic, had recommended it.
She and he had a common bond. They both had cancer. Roger Ebert publicly shared his cancer journey over the eleven years it lasted for him. He was a powerful voice for cancer patients and put a human face to the stigma of cancer. He was an inspiration to many people, especially my mother.
In the last three years of her life, she, my father, and I spent many major holidays in the emergency department of the hospital because her immune system was so vulnerable to infections and viruses. One of my mother’s goals was to see her all of her grandchildren graduate. Another was to celebrate the sixtieth anniversary of her marriage to my father. She lived long enough to enjoy those events. The culmination of her journey ended with hospice.
Grief is a process. It often comes in waves as we readjust our lives in the absence of those we loved and lost. After she died, I wrote about the hospice experience from the perspective of a caregiver in Journey to Bermuda, in order to help other caregivers find perspective, peace, and healing for themselves. My paintings were inspired by a trip that my dad and I took to Bermuda after my mom passed away. Her death hit him hard.
I kept my promise to my dying mother to use my experience to help other family caregivers. I began to blog as The Practical Caregiver in 2010. That eventually morphed into a series of caregiver books and The Practical Caregiver Guides website. Through the years, I have offered caregiver support for others providing family care.
Through the years, I also was blessed to meet some amazing patients at cancer centers, medical appointments, and in cancer advocate circles. They often shared their personal stories and strategies for survival with me. While some of them are no longer with us, others survived. Many managed to find ways to do some amazing things with their lives. Their insights as human beings undergoing invasive procedures, coupled with their resilience and determination to live their best lives were an inspiration to me.
Five years after my mother passed away, I became the full-time family caregiver for my elderly father. Over the next five years, he endured an epic battle with the shingles virus in his sciatic nerve, developed a foot drop, spent a year in a leg brace, but eventually regained his ability to walk, thanks to a lengthy regimen of physical therapy.
He later was felled multiple times with spinal stenosis, gout, pseudogout, and permanent nerve damage from the shingles virus that required multiple epidural shots. He and his doctors had some difficulty in managing his chronic pain alongside his cardiac issues.
He passed away only two months shy of his 94th birthday and just before the COVID-19 epidemic struck. I am grateful that he was spared that nightmare, though sadly many other families were not.
I myself became my own caregiver in the age of COVID, when I had two major surgeries within two years. My recovery depended on great surgeons, lots of physical therapy, and time to heal. I am happy to say that I am back on my feet and active, thanks to the care I received.