Author Mara Botonis had spent 25+ years in healthcare when her grandfather was diagnosed with Alzheimer’s disease. Learn about how her life and career were both impacted by her family’s personal account with Alzheimer’s and dementia.
Mara is now an advocate for caregivers and families with the disease, and her book, “When Caring Takes Courage,” focuses on the best practices for finding hope and joy when dealing with Alzheimer’s. Learn more.
It’s an Honor and a Privilege
“It’s an honor and a privilege.” Those are the words I shared with my mother during a phone call when I learned that she would now help to care for my grandfather, who was showing signs of dementia.
My own parents divorced when I was a year old, and I last saw my father when I was 14 before he passed away. So, my beloved grandfather was my paternal influence for over 40 years. He was a hero to many publicly and to our own family privately in every sense of the word including his humble aversion to it.
Looking back, I see that at the moment of that phone call, not only were our lives as a family forever changed, but it also completely altered the trajectory of my own life and career.
Becoming a Caregiver
However, from the moment my mother and grandmother shared with me my grandfather’s diagnosis, everything changed. I read every Alzheimer’s related article I could get my hands on. I learned everything I could from every nurse and neurologist, aide and activity director, memory care program coordinator and medical director I worked with. I learned as much as I could from every family I met, or read about as I traveled around the country for so many of those years. These hundreds of healthcare professionals and countless family caregivers became my mentors.
I began to learn what success looks like for persons impacted by dementia, how to handle difficult behaviors, how to manage caregiver burnout, how to carve out space for joy, how to live with the sadness and mitigate the guilt, how to connect with someone who feels “lost” to themselves and the world around them for much of the day. I learned how to help families create the greatest number of the best possible days together for as long as possible. I was learning how to help my grandfather by learning firsthand from one of the biggest pools of family caregivers and pioneering dementia care professionals across the country.
Those tips and tools, born from a professional passion that became a personal mission tuned into the book, “When Caring Takes Courage.”
Caregiving Tips
My upcoming articles will feature best practices along with tried and true practical solutions to the most oft-mentioned caregiving challenges which we’ll tackle together one at a time. Both my book and my new series, “Capable Caregiver Quick Tips,” is intended to create an interactive experience for you.
Consider this my open invitation for you to add your own successes in caregiving, because I know you can help others by commenting on my posts with your own ideas and tips. This series is meant to be a conversation about what’s working well. As we all know, the course of this disease is so different for every person, that the more tips we can share with each other the better.
If I had a chance to do that phone call over with my Mom, I would still tell her that caring for Grandpa is an honor and a privilege. I would also tell her that there’s no one, universal “right” way to go through this, and that she’ll be most successful when she trusts in her own intuition.
I would tell her that all the books, online articles and research papers she is going to read by people she’ll consider experts may know more about the disease process, but that there isn’t anyone who knows more about Grandpa than she and Grandma do, and that’s going to be the expertise that will matter most.
I would say that this journey will be equal parts heartache and heart-warming, exhausting and enriching, full of love and loss and frustration and fulfillment and most of all, in the end when we look back, our caregiving experience will probably be one of the greatest gifts we ever gave and received all at the same time.
This is dedicated to the memory of my grandfather, Bill.
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