Lewy. Mom, and Me

My mother lived with me so I saw her struggle with Lewy body dementia long before we finally got a diagnosis.
The hallucinations, the stories, the frozen stance, cognitive issues, and many others were frightening to witness without an explanation.

I wrote a memoir about our journey, called Lewy, Mom, and Me.

When Lewy Body Dementia entered my home, the world as I knew it began to shift and I found myself in a constant state of confusion. My sweet mother, who lived in our home, was hallucinating, her stories and behavior were becoming more and more bizarre, and I had no idea why – neither did any of the doctors I consulted. Lost and alone, I could feel myself becoming a little more unglued with every passing day while I watched the family rules fly out the window one by one. “Wait!” I depend on those family rules. They may not be the same as the neighbor’s rules but they’re mine, they’ve been mine forever, and I’m comfortable with them.

Written or unwritten family rules become our guidebook. Even as adults when we partner up with someone else who has a different set of rules, it doesn’t take long before we meld them together and find comfort and harmony with the new set. When dementia crept into my life and disorder began to rear its ugly head, my home felt like a foreign country and I didn’t speak its language. Confusion and disorder visited before. I was used to a little fracture here and there in my routine. My feathers got ruffled, I talked about it, or researched it, and sometimes received a remedy for an outside source. This time, as hard as I looked I couldn’t find a single answer and it wasn’t long before all hell broke loose and my harmonious routine turned into anarchy. That’s when I joined a support group and saught the company of others. That’s when I learned that I had to think outside the guidebook.

My mother was diagnosed with Lewy body dementia years after my search for answers and years after family harmony fell apart. After a few weeks of processing the information, I looked for some comfort in a book. I found a few books related to the topic but they were all medical or clinical. I wanted a memoir. A book that would make me laugh, cry, relate, and feel not so alone. Having found nothing, I gathered up my years of journals, and wrote one.

Writing Lewy, Mom, and Me was difficult. Re-living the journey over and over was often painful but also has been enriching. In the end it brought me a huge sense of accomplishment – especially when I hear from my readers. Many people have reached out to thank me for sharing my story and tell me how closely they relate to those stories. I am so happy to be able to offer the kind of support that I was looking for when I was lost and searching for comfort.