I�ll Remember, Poppy: Dementia�s Impact on Children

11 months ago 43

Anne O�Brien Carelli, New York, USA It was a rainy day, and I was on vacation. My plan was to read, write, and relax, taking advantage of time away from emails and phone. But a year before, I had...

Anne O�Brien Carelli, New York, USA

It was a rainy day, and I was on vacation. My plan was to read, write, and relax, taking advantage of time away from emails and phone.

But a year before, I had suddenly been thrust into the role of caregiver of a loved one with dementia. I was adjusting to a new reality that did not necessarily involve quiet time.

The diagnosis was a confirmation of what was suspected, but when I began reading about the disease and the role of a caregiver, I was shocked at how little I knew. I gobbled up books and numerous articles and basically the message was the same: We were on a challenging, sometimes bewildering, journey.

What struck me as I was reading was the lack of discussion about the impact of dementia on children in a loved one�s life. The behaviors of someone with dementia have a ripple effect that can disrupt family dynamics. Suddenly (or slowly over time as the disease reveals itself) family members have to grapple with the reality of the disease, weigh major decisions, and make adjustments. There can be natural shifts in roles and responsibilities, and/or conflicting opinions, denial, disagreements, fears, and frustration.

Children pick up on the stresses of the family. Traditions and activities may be altered or discontinued. Children may witness changes in the loved one and become confused and scared. They may think they are the cause of the new behaviors, especially if a loved one is not as responsive as in the past.�

I began to explore what materials are available that address children and dementia. I have a background as an educator, a PhD that focused on child development, and I am the author of children�s books. I also interviewed kids. As owner of a leadership training business I had the opportunity to train Directors of Nursing from a number of nursing homes. The combination of my professional background, the shock of adjusting to a scary diagnosis, and my observation of a gap in resources for children resulted in a �perfect storm� compelling me to write I�ll Remember, Poppy.

Told from the perspective of a child, I wanted families to be informed about the disease, and children to know they can play a role in caregiving. I did not expect to write it in one sitting, but I was knee-deep in caregiving and the emotions that come with that role, and the words flowed.��

I showed the manuscript draft to my loved one and he immediately encouraged me to publish the book and use it to �tell everyone about this disease.� (He�s an educator, too, and that urge to teach is still there.) I realized a more specific �Author�s Note� could provide important information for families and friends who are confronted with the disease.�

Hopefully, the book will remind readers that children are remarkably observant and compassionate, and they need protection and understanding as a family adjusts to life with a loved one who has dementia. Find my book on Amazon:� I�ll Remember, Poppy

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About the Author

Anne O�Brien Carelli is the author of adult nonfiction, middle grade historical fiction, and two picture books (www.anneobriencarelli.com). She studied history at Case Western Reserve University and for her PhD, Anne researched psychology of the gifted, with an emphasis on creativity and leadership in children. She was the Executive Director of the New York State Equity Center and the owner of a leadership training business. Originally from Ann Arbor, Michigan, Anne lives in the Hudson River Valley in upstate New York. If she can find any free time, she spends it quilting, volunteering with refugee families, exploring historical sites, and reading, reading, reading.