Confessions of a Reluctant Caregiver with @sisterhoodcare on @ukhealthradio- @JeanLee18 shares her experiences caring for her parents, both diagnosed with #Alzheimers, leading her to become an author and co-found @AlzAuthors.
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Hello Friends,
I was on vacation last week at a lovely lake in the mountains of TN. My husband and I have been trailering a small water ski boat to this lake for 31 years. We started this trip when our own children were age 10 and 14. Now we have grandchildren that age who love the water sports just as their parents did.
Here's a photo I snapped, in the quiet of one early morning, from the balcony of our rented house.
This time away with family always provides a space for personal reflection.
This year I was aware that Lisa Marshall’s post about her beautiful spouse memoir, Oh Hello Alzheimer’s, was due to be released on AlzAuthors when I returned home.
As Lisa’s story lingered in my mind, It brought up much emotion when I consider that, at age 68, I’m so thankful to be enjoying precious time with my family.
Lisa’s husband, Peter, was diagnosed with early-onset Alzheimer’s at the young age of 53.
Her book is a gripping must-read. You won’t want to put the book down as Lisa describes her drive and struggle to create precious times with Peter, despite his devastating diagnosis.
We applaud Lisa on her bravery in revealing her love story and allowing us to elevate it to support others on a similar journey.
Thank you, Lisa.
Lisa tells us:
My husband, Peter, was diagnosed with Early On-set Alzheimer’s at the young age of 53. While the diagnosis was devastating and could have overpowered me, I knew that I had to understand the disease and what to expect. Being Peter’s caregiver would require enormous research, but I could find little available.
I started a blog entitled Oh Hello Alzheimer’s to offer readers the chance to get a firsthand look inside our private walls. I began to share the raw emotions of receiving the diagnosis and its unfairness. The horror of knowing there is no cure for Alzheimer’s and the panic of slowly losing the love of your life. The blog quickly became a global resource.
As a former teacher, I observed students to be inclined either toward areas of art or areas of logic. These two inclinations were most likely separate and rarely merged. Those who leaned toward the arts loved to read and write but the logical study of scientific data and math equations was more tedious for them and vice versa.
I’ve always been an individual drawn to the arts. I’ve loved to read. Immersion in books taught me other points of view and books took me other places. No book was ever too long for me. I just whittled away, lost in the words and concepts, until the book was magically over.
At times in my life, I’ve thought God left out the logical part of my brain. I have great admiration for those who live by logic, as I’m more driven by the heart.
Although I was a reader, I never expected to write a book. But once I started writing Alzheimer’s Daughter, the art of putting the words together to evoke emotion drove me to continue working on the book for four years until I published.
I’m fortunate to be able to work with other managers and board members of AlzAuthors who transition seamlessly from art and emotion to logic and detail.
In order for an author’s work to be showcased by AlzAuthors, first it must touch the heart, then it must have good, solid details that will resonate and guide a current care partner as well as being of value to organizations that form the tribe around Alzheimer’s and caregiving.
Our featured book this week does this and so much more! Our author, Daniel C. Potts, MD, a neurologist, brings all of the components of logical accomplishments together in his medical practice, but he writes this beautiful book with such artistic and emotional sensitivity that I was brought to goose bumps and tears many times. Bringing Art to Life is not simply a book about art and Alzheimer’s, it speaks of deep relationships and the building and giving back of personhood for both the person with dementia and the one providing care in the relationship. I guarantee your heart will be touched and your life blessed if you read this lovely book!
Daniel C. Potts, M.D. writes:
A neurologist and only child, I struggled with self-doubt and guilt, deeply desiring to please my parents and care for them with the devotion and compassion they deserved. Medicine taught me the science of Alzheimer’s, but not day to day care giving skills. I felt like a failure, incapable of advising and supporting Mother as I desired, and of giving Dad the most dignifying care. During that dark time and afterward, I nearly succumbed to burn-out and despair. Yet his example buoyed me on. I discovered my own gift of writing, and poetry was the candle that brightened many woeful hours.
How would I honor his legacy and pay forward the gift I had been given in such a wonderful father, one who had faced his toughest battles by loving bravely and painting the world in his heart’s vibrant colors? Would he have been proud of the way I have told his story, faced my own challenges, and shared my own art born of authentic personhood brought to the surface through suffering?
We’ve all had life-changing experiences. My first, and most impactful, happened when I was too young to have memory.
In 1956, I was diagnosed with spinal meningitis when I was two and a half years old. We lived in small-town Ohio where the undertaker doubled as the ambulance driver. I was rushed to the nearest large children’s hospital and put in isolation. Two other children were also hospitalized with the same infection. They died within days. As a last-ditch effort, doctors drilled three burr holes in my tiny skull to relieve pressure. (I can still feel the dents in my head, although now covered with bone.) Miraculously, I survived. I spent six weeks in the hospital gaining strength and learning to walk again. Doctors told my mom and dad I’d never be normal.
But, my mother was determined I would be absolutely normal. Although I have few memories of that time, as I grew, I recall we did flash cards every day without fail. She pumped me full of good garden-grown food. One vivid and recurring memory is being absolutely terrified to go back for regular checkups with the doctor, so my mom would bake banana bread with me and have me walk proudly into the office to deliver the bread to the doctor.
My illness fostered a strong faith within my parents. They begged God for my life and in return they grew a strong faith in me.
Every day of my life was viewed through an aura of….
Without faith, you might not have had an extra day beyond two and a half years.
God spared your life.
Therefore, for every day you live beyond that you must:
-be thankful to God,
- pay back
- and do good for others.
My parents’ dual diagnosis with Alzheimer’s and simultaneous decline rates right up there as my second life-changing experience. Because my parents saved my life and loved and cared for me, it became critical for me to make the best decisions for them through their disease process. I’m so thankful I found the comfort of AlzAuthors and the sisterhood and brotherhood we share on this journey along with other care partners.
At AlzAuthors we feature books written from all faiths worldwide, as well as no faith at all. All well-written personal experiences with Alzheimer’s and dementia are honored, lifted, and elevated for the good of caregivers, through our platform.
With that said, I’d like to share a faith-based, inspirational book that touched my heart recently. I’m honored to introduce you to Cheryl Crofoot Knapp and her memoir of taking care of both parents, Undefeated Innocence.
Cheryl Crofoot Knapp shares her personal experience
with Alzheimer's disease in
Cheryl writes:
I barely understood Alzheimer’s the first time it staged assault on our family. It was an unwanted guest stealing my dad. My mom tried to handle everything on her own. She hid a psychiatric evaluation that revealed my dad failed the clock test, had a functional IQ of under 90, and needed immediate full-time care. Mom thought she could fix him. She couldn’t help my dad, her depression returned, and I made the difficult decision to place him immediately in a care facility.
...Two years later, the unwanted guest made a repeat performance with my mom in the lead role. She was still mobile and enjoyed being sociable, but she needed to move to a residential community that could provide care as the disease progressed. She loved to play cards (until she couldn’t remember how to play the games) and chat with her new girlfriends. A year later, my husband and I moved 800 miles from Minnesota to Arkansas to help her and become her legal guardians.
Paula de Ronde, a retired librarian from Ontario, Canada, was thrown into a spouse caregiver role for her beloved husband, Bert. As a result of her powerful journey she wrote My Bert Has Alzheimer's. We guarantee your heart will be touched as you learn about their intimate journey.
Paula shares: I was uninformed but not for long as my life, career and advocacy interests all seemed to converge with the diagnosis. Writing became my therapy and a major self-care issue as I stumbled through the highs and lows of caring for my beloved husband who was slowly losing his personhood under the onslaught of the dreaded disease.
I recorded as I learnt and needed to share. I wanted to pass on all that I was experiencing to my new community of fellow caregivers, my companions on this unfamiliar road.
I rebelled at the stigma associated with Dementia acknowledging that this was the real ignorance that manifested itself in such negativity. I wanted to scream: “It’s a disease! He’s not crazy!”
If you are a spouse/caregiver, you'll certainly want to add this book to your caregiving collection by Susan Elkin. She is a British former teacher of secondary school English from South London who has been writing professionally since 1990: journalism for newspapers, magazines and websites and over 50 books. So when her husband, Nick was diagnosed with Alzheimer’s disease in 2017, blogging about it came naturally. Those blogs, which ran until Nick’s death in 2019, are now compiled into her new book, The Alzheimer’s Diaries.
Susan writes:
Could, or should, I write about this “journey” that Ms Alzheimer’s had forced on us? Well, obviously, not without Nick’s permission. He was a quiet, quite private man so I expected him to give me an unequivocal no. To my amazement he said: “Yes, why not? When we meet people out it’s going to be much easier for me if everyone knows because they’ll make allowances – and maybe going public will help others.”
Julissa Cruz Gomez is a Dominican doctor who lives and works in the Netherlands. In her vividly colorful book she takes children on a journey through the brain's pathways.
Julissa writes:
In this story, my niece, along with her cousin, a cat and a dog, undertake a wonderful journey to their grandmother's brain to understand what is happening there. There they meet Mr. Hippocampus and see the neurons up close. It is a beautiful story where children learn that love, patience and empathy is what their grandparents with cognitive problems need the most.
