Family

Alzheimer’s is called the ‘family disease.’ How to address the issues in your personal Alzheimer’s circle.

Mara Botonis: the making of an advocate

Mara Botonis: the making of an advocate

“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 and my step-dad were moving in with my grandparents and would help to care for my grandfather, who was just starting to show signs of Alzheimer’s.

During that talk, several years ago, so many thoughts were racing through my mind.  How much more quality time would we have with my grandfather? When would he start to forget us, forget his wife of 60+ years? How lucky for my grandparents that their daughter, my mom, was able to move in with them and help care for them in their own home (despite the increased care needs that the future would bring) to delay the need for placement in an Alzheimer’s community or hiring of professional caregivers. I remember thinking, how could this be happening to Grandpa? To us?

Looking back, I see that at the moment of that call, not only were our lives as a family forever changed, but Grandpa’s diagnosis also completely altered the trajectory of my own life and career.

Not only were our lives as a family forever changed, but Grandpa’s diagnosis also completely altered the trajectory of my own life and career.

Helping seniors had been my passionate purpose since I was 14 and got my parents’ permission to volunteer in a nursing home in upstate New York on summer vacation, not because I needed to but because I wanted to. Not many 14-year-olds on break choose to spend their time emptying bedpans and changing soiled linens just to have a few moments each day to connect with elderly patients they barely know, but I did. And I loved getting to know them, getting to learn their life stories.

My journey evolved into marketing positions when an administrator saw me give a weekend tour to a family at the assisted living facility I worked my way through college at.

It became my job to listen and learn from every family who inquired, and identify what was most important to them in choosing the right community for placement, and then move their loved one in as quickly as possible so that they could get the help they needed.

But from the moment my mother and grandmother shared with me my grandfather’s diagnosis, everything changed. Though my role as national director of sales and marketing memory care for one of the country’s largest providers of assisted living was still the same, my motivation was completely different.

I read every Alzheimer’s related article I could get my hands on. I learned everything I could from every nurse and neurologist and Alzheimer’s organization I encountered nationwide. I gleaned everything I could from every family story I heard or read about across the country and there were hundreds of them.

These families, through their stories of real struggle, genuine hope and even happiness living with Alzheimer’s and dementia, became my mentors.

I began to learn what worked best for caregivers at home, how to handle difficult behaviors, how to manage burnout, how to carve out space for joy, how to live with the sadness and mitigate the guilt, and how to do everything possible to prolong the amount of quality time they had with their loved one at home.

I was learning, without realizing it, how to do the opposite of what my job required: I was learning how to help families impacted by Alzheimer’s/dementia keep their loved one safely at home as long as possible.

I learned how to help caregivers have the greatest number of the best possible days together for as long as possible. I was learning how to help my grandfather by helping the women who loved and cared for him at home. I was learning in a way that very few others before me have. I was learning firsthand from one of the biggest pools of family caregivers and Alzheimer’s professionals across the country what success looks like for families coping with this disease.

I learned how to help caregivers have the greatest number of the best possible days together for as long as possible.

It would be 10 more years before I would be at a place and time in my life when I would finally get the chance to compile and share that information and write my book When Caring Takes Courage.

There are currently 5.2 million Americans living with Alzheimer’s disease. By 2025 that figure will increase 40% to 7.1 million Americans. By 2050, without a medical breakthrough to slow or prevent the disease, that figure will triple over today’s numbers and affect up to 16 million Americans. Currently, a whopping 80% of those living with Alzheimer’s are cared for at home by a family member. That means there are 15 million family caregivers striving to cope with the new and difficult challenges that caring for a loved one with this disease bring on a daily basis.

This book was lovingly written in honor of these family caregivers whose noble sacrifices often go unnoticed and unappreciated. On the following pages is a guide intended to accompany the family caregiver while navigating the unpredictable and unique path that this disease thrusts upon them. It contains best practices, tried and true practical solutions, step-by-step “how-to’s” and things to think about. It is designed to offer caregivers the information they need to make the best possible choices for their loved ones and themselves.

This book is over 30 years in the making and represents countless hours over many years of research, completed by learning from the example of families impacted by Alzheimer’s disease and professionals in the field of dementia care from all walks of life, at all stages in the disease process, and in all types of situations.

This book represents the best advice I could find from the neurologists, doctors, nurses, care aides, memory care program directors, wives, husbands, sons and daughters, grandchildren and friends around the country who are proving every single day that there can still be joy and hope and even happiness in a life touched by Alzheimer’s disease.

Click here to download FREE caregiver tools from Mara’s book, “When Caring Takes Courage”

Excerpted with permission from When Caring Takes Courage, A Compassionate and Interactive Guide for Alzheimer’s and Dementia Caregivers, copyright 2014.


When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer's and Dementia Caregivers

Mara’s passion and life’s work has been to learn the best practices which capable caregivers (both professional and family member) use to find success, joy and hope in the face of this devastating disease and find a way to share that information with those who deal with dementia on a day-to-day basis. She is the 2015 Jefferson Award Recipient: Outstanding Public Service, and the 2015 Jacqueline Kennedy Onassis Award Recipient: Outstanding Public Service on Behalf of and Throughout the United States. She continues to be an active speaker and advocate for those impacted by dementia worldwide. Learn more about her work at: www.whencaringtakescourage.com.


About the author

Mara Botonis

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