Alzheimer's Daughter: When Both Parents are Diagnosed the Same Day!

Jean Lee - September 18, 2017 12:31 PM

At age 86, both of my parents were diagnosed on the same day with Alzheimer’s.

Three years prior, my sister and I became concerned about their mental clarity.

I lived one mile away from my parents in our small town of 700 and worked as an elementary teacher. My sister lived 1000 miles away. In order to keep her updated about my concerns, my sister suggested I keep a journal. Each time we talked I’d open the journal and review. My sister was my constant support, my therapist by phone. She visited often and was willing to take on the role of bad cop when difficult decisions needed to be made, so I could remain the loving caregiver.

I journaled about concerns for Mom and Dad’s driving ability, lack of safety in their home, cleanliness, and hoarding. Feeling like a Judas betrayer, I hid the journal in the bottom of my kitchen junk drawer under a stack of telephone books, pencil stubs and dried-up pens, hoping no one would find the traitorous things I’d written.

The journal became a key piece of evidence at the time of their diagnosis.

Six years and three moves later, eventually to a locked dementia unit, their lives ended but I believe their spirits live on.

We were raised with faith. We supported and attended church every Sunday. We prayed around the dining table, thanking God for blessings as big as world peace and as small as the first garden tomato and tasseling sweet corn. Mom and Dad knelt beside the bed every night praying for health concerns for those near and dear.

As the end of life approached both talked about visits from their parents and deceased family members. I came to believe our loved ones form a cloud around us, beckoning us to step through the door to the eternal.

When I had to tell Dad that Mom had died, he said, “Really? She just visited me and told me she’d wait for me in heaven.”  However, only one week later, Dad couldn’t remember he’d had a wife, but said, “Where is that woman I admired?”

I replied, “Dad, you were such a gentleman you let Mom go to heaven first.”

He said, “No wonder I can’t find her.” He waved at the clouds saying, “I’ll be there soon.”

Dad died one year after Mom. I believe my parents are restored and reunited.

Alzheimer’s is often shrouded in secrets and privacy, with the goal of preserving the dignity of the afflicted. Thus, the caregiver lacks support.

Throughout our journey I read everything I could find about personal experiences with the disease, but those resources were far-flung and difficult to find. I’d spend hours late at night, searching 500 books deep on Amazon. Then I wrote Alzheimer’s Daughter, the book I needed to read all along.

Added to the story as chapter beginnings are Mom and Dad’s WWII love letters, which I found as I cleaned out their house. These letters contrast their love and devotion—their vows for better or worse, in sickness and health—with their inability to care for each other as the disease shattered them both.

In my opinion, their writing is the most beautiful part of the book.

I spent three years writing Alzheimer’s Daughter and a year agonizing about whether it should remain a private, family story, or become public. While pushing the final “publish” button, I thought I might be struck by lightning as punishment for revealing something so intimate. Now two years later, people I’ve never met have helped me heal by telling me through reviews that the story has helped them cope.

Since publishing, I’ve connected with four other authors of books about Alzheimer’s and dementia; Marianne Sciucco, author of Blue Hydrangeas, Vicki Tapia, author of Somebody Stole My Iron, Canadian author Kathryn Harrison, author of Weeds in Nana’s Garden and Ann Campanella, author of Motherhood, Lost and Found. Our goal has been to collate resources for Alzheimer’s caregivers and those living with memory impairment by starting AlzAuthors blog. We seek out well vetted, best selling authors and ask them to write a post about the impetus behind their books. We’ve now posted over 100 articles by and authors and gathered their books in AlzAuthors bookstore.

We share common goals at eCare Diary and AlzAuthors; making resources easy to find for long term caregivers and those living with progressive illness.

Alzheimer’s Daughter blog

Alzheimer’s Daughter Facebook page

Jean Lee is author of Alzheimer's Daughter, and one of the founders of AlzAuthors blog, a forum that offers knowledge and support to those either suffering from or caring for loved ones with Alzheimer’s.

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