I have often joked that I don’t know whether my mother inspires me or haunts me. During the six-and-half years she cared for my dad following his debilitating stroke, she wrote letters to me in which she expressed everything she was experiencing and exactly how she felt about it.
I saved her letters because each one was like an episode of M*A*S*H. There was always something that made me laugh, something that made me cry, and she always told a story that revealed the resilience of the human spirit in the midst of suffering.
When Mom became Dad’s full time caregiver at age 70, she was losing her vision due to macular degeneration. Her back was hunched with Osteoporosis. She had a scar that started at her throat and ended at her breastbone as a result of open heart surgery. She didn’t sleep at night because of her restless leg syndrome; but the thing that frustrated her more than anything, was her severe hearing loss that developed as a result of the medication she was taking for her heart.
My parents lived on a farm in central Kansas six miles from a town of fourteen thousand people. Mom wrote letters because it gave her a safe place to express her feelings and release her emotional stress. It also helped her combat feelings of isolation and loneliness. She said she liked to write because she could “talk” as long as she wanted without having to witness anyone’s eyes glazing over from boredom.
Chronicles of a Caregiver
About five years into her caregiving experience, she wrote and said, “I wish I had been keeping a journal all of these years. I think it would be interesting to see how I have grown and changed mentally and spiritually. I also think my experiences could benefit others who are in a similar situation.”
A few years after Mom died, that paragraph gave me the permission I needed to edit her letters into the book, “Letters from Madelyn, Chronicles of a Caregiver.”
When my children read the book, they all said, “Wow! I never knew Grandma!” Without her letters they would have never known the extent of her strength or courage, and they would have never known she had a wicked sense of humor.
When I started sharing her stories with small caregiver support groups, people would often say, “Madelyn gives me permission to be human.” They loved her unflinching honesty and were grateful to learn that having negative feelings didn’t make them bad people.
Knowing that Mom’s experience was helping empower other caregivers inspired me to speak to more people in more places. Three years ago I was on a plane on my way home from a large caregiver conference when the man seated next to me asked what I did. When I told him, he said, “So if I went to my computer at 3:00 o’clock in the morning, absolutely desperate for information or support to help me get through the night, would I find it on your website?”
I felt like I’d been punched in the stomach. I said, “No. You wouldn’t. My website is all about my book and all about me speaking.”
Initially I felt deflated, but that conversation inspired me to go home and talk my husband into helping me develop a video-based caregiver support program. When we initially talked about it, he said, “That sounds like a lot of work.”
I said, “I promise! It won’t be that big of a deal. It will take two months – three maximum.”
Two years later we launched CaregiverHelp.com. A friend recently asked, “Did you ever dream that box of letters would develop into such a big a business?”
Of course not! Starting and growing a business was never the goal. There was just so much to say about caregiver anger, guilt, depression and grief, and there were so many people who needed to know the importance of self-care that I just couldn’t stop!
A Chain Reaction of Sharing & Learning: Mom’s Influence Lives On
I know Mom would be thrilled to know that her experience is providing encouragement and inspiration to other caregivers. She had a voracious appetite for self-help and spiritual books and often brought home stacks of library books in search of inspiration.
She read “Man’s Search for Meaning” in 1960, and it changed her life. I was nine years old and sitting on the concrete steps that led into the pit of our milk barn when she told me about the author, Dr. Viktor Frankl. I remember watching her dip an old rag into a bucket of warm, soapy water, and as she washed the manure off of the cows’ teats, she told me about his experience in a Nazi concentration camp.
Mom said they had taken away Dr. Frankl’s family, his home and his business. When he arrived in Auschwitz all he had left was a suitcase which contained a manuscript of a book he’d been working on for ten years and the clothes on his back. They took the suitcase and his clothes, and then they proceeded to shave every hair off of his body. Mom described some of the hunger, humiliation and deprivation suffered by the people in that camp, but the thing that intrigued and inspired her was Dr. Frankl’s statement about choice. He said, “Everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.” Dr. Frankl’s statement isn’t just one of the most inspirational quotes for caregivers, it’s a quote that many of us — even those on the receiving end of care — can look to for inspiration.
My mother was in her mid-thirties when Dr. Frankl became her personal hero. She hated the farm, but she loved my father, so she recognized that adopting this philosophy would help her come to a place of mental and spiritual peace. I suspect I heard her say at least a thousand times, “As long as I have the ability to read and to think, I will have the power to choose my attitude toward any person, thing, or event.”
Her determination to control her attitude and to view every experience, good or bad, as an opportunity for mental and spiritual growth gave her the strength she needed to care for my dad.
My mother died on March 2, 2002. And yet, every time I sit down to write an article and every time I step on a podium to deliver a keynote speech or workshop, I am aware of how she continues to inspire me and influence the way I view the world.
Had she known that her letters would end up reaching and empowering thousands of family and professional caregivers across the country and become required reading for university gerontology students, she would have been humbled and probably quite surprised.
She never thought of herself as being extraordinary. After Dad died she said, “I would have never dreamed at the beginning that I would have the mental, physical or emotional strength to care for Quentin for more than six years.” She said, “It was the hardest thing I’ve ever done, and I wouldn’t wish this on anyone. But I’m so glad I did it, because if I hadn’t, I would have never had the opportunity to grow and learn so much.”
If you are caring for someone who is aging, disabled or chronically ill, I hope you’ll find a way to share your thoughts, feelings and experiences with others. If you do, I think you’ll find it relieves a lot of emotional stress. And you never know, by sharing your story, you might end up giving someone else a bit of wisdom, a little courage and the inspiration they need to get through a tough day or a sleepless night.
Elaine K Sanchez is an author, speaker and co-founder of CaregiverHelp.com, a video based caregiver support program. She co-teaches “Gero 407- Caregiving” at Western Oregon University with her husband, Dr. Alex Sanchez. She also writes the daily blog, “Caregiver Help Word of the Day”.