By Lori Aden and Sheila Parsley, Texas, USA
Our mother got lost driving home from the nail salon back in 2014. At the time, she lived in California, and we lived in Texas. We knew she was having trouble with her memory because she constantly repeated herself during our weekly phone calls. But when we learned she got lost while driving a route she had done for 14 years, we knew it was time to move her back home to Texas to live with us. At the time, we hadn’t quite mentally prepared ourselves that this was Alzheimer’s. We knew our grandmother had passed away from the disease, along with two of our grandmother’s siblings. But we didn’t make the connection until she got lost.
At first, we cared for her at home using sitters and neighbors and swapping work schedules so that someone was always home with her. Then as she progressed into the later stages, we moved her into a memory care center. During her last year, we moved her into a nursing home. Unfortunately, this is also when COVID hit. We were her primary caregivers, so her physical and mental health declined rapidly when we could no longer visit to help feed her or engage with her. After much fighting, my sister and I, in full personal protection equipment, were able to spend the last three days with her before she passed away – four months after the lockdown started.
We wanted our family and friends to stay up-to-date with her progression through the disease, so we journaled it with the “Mom Chronicles” on Facebook. We wrote a book called “I Remember Me – The Mom Chronicles” and published it in 2021, which shared our journey, along with tips and tricks for each stage of the disease.
Friends asked us about resources for children. As we were digging into this, we noticed there were not many options out there that gave a full picture of the disease in easy-to-understand terms, so we decided to write a children’s book. As we worked through the outline, we realized there was too much information for just one book, so we decided to write a series that walks children through the behaviors noticed in the three major stages of Alzheimer’s: the Beginning, the Middle, and the Late Stages. We also chose to use a whimsical dragon family to make the subject less scary. This also solved the problem of not wanting to alienate anyone by not having characters that looked like them. Families can choose the book that best fits their family’s situation.
We wanted to show the love between a grandchild and grandparent as well as the truly emotional feelings that can result from odd behavior happening during this disease. We didn’t shy away from showing sadness or anger, or embarrassing topics.
Finally, we wrote two versions so that families could choose between a “Grandma is Acting Funny” or a “Grandpa is Acting Funny” series. They both are the same, with some minor differences in wording.
We hope this series touches your hearts!
About the Authors
Dr. Lori Aden is an educator by trade with over 30 years of experience in K12 and higher education. With a master’s degree in Educational Technology and a doctorate in Teacher Leadership, Lori used her education experience to research Alzheimer’s caregiving from many different perspectives while caring for her mother. Lori successfully completed the EssentialALZ© Alzheimer’s Association Training and Certification program to become a more knowledgeable advocate for Alzheimer’s caregiving and education. She works full-time as a program coordinator for one of the largest education service centers in Texas and part-time as an adjunct instructor for a community college. However, her proudest roles are wife, sister, mom and nana. Most importantly, she is the devoted daughter of Marylin, who is the inspiration behind this book series and her first book, “I Remember Me – The Mom Chronicles.”
Sheila Parsley, sister of co-author Lori, earned a master’s degree in Counseling and has worked in the mental health field for over 23 years. Sheila successfully completed the EssentialALZ© Alzheimer’s Association Training and Certification program. When she is not working, she can be found reading or in the kitchen baking for family and friends with her Texas Cottage Baker business called “Treasured Treats and Trinkets.” She loves all things dragons and was the inspiration behind using a whimsical dragon family for this book series. Sheila was an integral part of the caregiving for her mother, Marylin. She would drive to Dallas every other weekend for over six years to spend valuable time with her mom and give her sister and brother-in-law respite breaks.
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