Speaking Out About Alzheimer’s

Author and caregiver, Jean Lee, had her parents diagnosed with Alzheimer’s on the same day. Learn more from her personal experience as a caregiver and daughter speaking out about the disease.Speaking Out About Alzheimer's

Being an Alzheimer’s Caregiver

Caregivers. We are all caregivers. As humans we care for one another, or we should. Most especially, we care for those close to us.

As a youth my parents were my caregivers. I loved and respected them in my child-like way. As a young mom and wife, I cared for my husband and children. As an elementary school teacher, I cared for my students.

But the logical timeline of love, maturation and respect tipped topsy-turvy when my parents reached their eighties. They slowly began to lose their minds and lose the simple skills that had been second nature.

Bills were left unpaid. Leftovers from daily trips to the local restaurant were stacked in the refrigerator to the point there was no room for fresh groceries which spoiled on the kitchen countertop. Hoarding took over the house.

Fearing for their safety when they drove out of our small town, I took time from work to take them to medical appointments. I talked behind the scenes with their long-time internist. After a handful of referrals, eventually to a gerontologist,

Dad and Mom were both diagnosed with Alzheimer’s disease on the same day.

Over the next decade I became the parent to my parents. It was gradual at first. I would stop every day after school to be sure they had taken their meds, toss spoiled food and write checks to pay their bills.

My parents had always been physically healthy people, so they could not believe they had a disease. They told me they wanted no one to know because they did not want people to think they were crazy. I asked if they thought Ronald Reagan was crazy when he announced he had Alzheimer’s. They murmured something about small-town rumors. I honored their request and aside from my immediate family, shared my dilemma with less than a handful of coworkers.

After years of opposing back and forth discussions, I made the painful decision to move them to a senior community, 20 miles from our hometown in order to protect their safety. This began a downward spiral of guilt as I sold their home while they were still alive without their knowledge, discarding family treasures because the memories of those items dissolved as did my parents neural pathways. I felt I had taken everything away from the people who had given me everything.

As I struggled to keep the pieces of my life together, – my marriage, my own family, my career and the care of my parents – I grasped for resources, but found few. My parents brought me up to be a positive, spiritual person, therefore I sought uplifting resources, but much of what I read was written with a negative undertone. I found books about the ill-treatment of a caregiver by an unreasonable loved one, about adult siblings who fought, and about children who had grown up with angst toward a parent continuing through caregiving years. Even so, every time I found any kernel of truth, I felt as though I could keep going, someone else was brave enough to share their story of this upside-down world as well.

Four years and three moves later, eventually to a locked down memory care unit, Mom died one year before Dad. While sitting with him only one week after her passing, I realized he had no memory of her, or their 66-year marriage.

I came to the conclusion that sharing our journey of their dual diagnosis and simultaneous decline might help others. So I broke my silence and wrote the book I needed to read, with the purpose of helping others, reassuring they are not alone. I wrote to show that faith and love abide in a person alongside the sadness.

Speaking Out About Alzheimer’sAlzheimer's Daughter

“Alzheimer’s Daughter” mirrors my own journey caring for both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects of the disease, but it is a WWII love story held together by faith and family that is contained within the pages.

Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s and dementia, all of us compelled to write our books, hoping to make a difference and hoping that we might make the pathway of others traveling this road a little less painful and lonely. Perhaps you will find comfort and support within our pages.

If Alzheimer’s has touched your life, and you seek connection with others who have shared this journey, below are four more books written from different perspectives about the disease. We join together to recognize those unsung heroes, family caregivers.

1. “Somebody Stole My Iron” by Vicki Tapia

Vicki details the daily challenges, turbulent emotions, and painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe her book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s and dementia patient’s family.” Vicki wrote this story to offer hope to others, to reassure them that they’re not alone.

2. “Blue Hydrangeas” by Marianne Sciucco

Marianne describes herself as a writer who happens to be a nurse. This work of fiction is based upon her care for the elderly. It’s a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer’s and Jack becomes her caregiver.

3. “What Flowers Remember” by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a small-town preteen girl, Delia, whose elderly neighbor, Old Red Clancy is failing mentally. The aged gentleman has to be placed in a care facility, but Delia will not let him wither away. She devises a way for the whole community to remind Old Red how important he has been in all of their lives.

4. “On Pluto: Inside the Mind of Alzheimer’s” by Greg O’Brien

Diagnosed with early-onset Alzheimer’s, Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself a sliver at a time while still fighting to live with Alzheimer’s, not die with it.

About the AuthorJean Lee

Jean Lee wrote lesson plans for 22 years as an elementary school teacher. She had no aspirations to write a book, however when both parents were diagnosed on the same day with Alzheimer’s, her journey as their caregiver poured out on paper through “Alzheimer’s Daughter.” After the sadness of her parents decline, life brought her a joyful topic – triplet grandchildren. She is currently working on a series of books for ages 9-12 entitled “Lexi’s Triplets,” written through the voice of the family mutt.

Do you have any Alzheimer’s book suggestions that may help other caregivers in their journey? Share them with us in the comments below.

Related Articles:

Please leave your thoughts and comments

  • Jean Lee

    Thank you for sharing this on Christmas. My heart is touched.

    • caitlinburm

      Thank you for sharing your wonderful writing with us, Jean!

  • Eunice Gibson

    I cared for my husband about 8 years before he died of Alzheimer’s last spring. He did not know he was ill. Luckily, we were both retired attorneys so we didn’t have job responsibilities. Even more luckily, we have 5 adult children who also live in our town, other relatives in our state and other relatives far away. I told everybody, family, friends, the mailman, everybody, that my dear husband had Alzheimer’s, so everyone could look out for him. That may not work for everyone, but it worked for us. Secrecy is too much effort and I found so much understanding and kindness.

    • caitlinburm

      Thank you Eunice, for sharing such a personal story with us about you and your family.

      We are so very sorry for your loss, but are happy to hear how well sharing your husband’s disease with others worked for you during such a difficult time.

    • Dr. Karen Hutchins Pirnot

      Eunice, I also told friends and family early on as I believed I could use all the help I could get! It worked out so well for us as even the grandchildren were active in looking out for their “Poppy.”

  • Dr. Karen Hutchins Pirnot

    I have also recently published a book called “Nothing Left to Burn, A story of Alzheimer’s.” It details eight years in the life of a caregiver for my husband diagnosed with the disease. It’s available on Amazon along with a just-published book called “Making Love on Scrabble.” That book explains the program of reinforcement I have used for my husband during my years as his caregiver. Dr. Karen Hutchins Pirnot