For those who prefer to listen to this blog post:
Do you ever find yourself asking: “How did I get here? What series of events brought me to this place?” Or even, “Oh my god, what am I suppose to do next?” That’s where I found myself.
Successful by standards used in judging progress though corporate America, I retired early from a 30+ year career. I’ve had a fulfilling life. Although I never had children, I continually found rich connections through family and friends. I travelled the globe challenged by my work and open to the unique experiences life brought me each and every day.
The 18-year dementia journey I shared with my mom through my midlife years drove me to a post retirement passion. Now I introduce myself as a writer, an activist and a dementia caregiving survivor; a role that’s fulfilling in profoundly different ways than anything I’ve ever done.
I’m engaging in deep connections with perfect strangers now, sharing common and challenging adventures we’ve encountered while partnering with a loved one in care. I’m discovering how comfort comes to those on a journey of care by disclosing both my moments of strength and vulnerability. I’m apprenticing in the art of balance – balance between raw emotion I felt as a caregiver with the humanity and fear those living with disease must confront through diagnosis and decline.
And I’m learning consequential lessons about the power of my story.
In 2019 I had the opportunity to design and deliver a national conference track titled “Policy and Advocacy for Family Caregivers: Empower. Act. Transform.” Throughout a year filled with event planning for what would be a two day offering, I engaged with talented people from all walks of life; current and former caregivers, policy makers, business owners, federal and state employees in wellness and health care organizations, as well as entrepreneurial innovators.
However, it was a newly elected Lieutenant Governor from the state of Illinois that touched my heart most. She, a former dementia family caregiver for her mom, was moving on after losing her mom to the disease and attaining the office of Lt. Governor. Lt. Governor posts can be somewhat ceremonial; as high officers of the state their primary responsibility is to step in as Governor when required. Instead Lt. Governor Juliana Stratton chose to use her role, her story and the stories of others as a dynamic force in driving powerful policy change.
Throughout 2019 Lt. Governor Stratton embarked on a listening tour across the state of Illinois called “LG Cares: Though Our Eyes Campaign”. She moved from locale to locale, urban to rural, conference room to library to civic building with a focus on dementia caregiving. She asked how changes in policy could make a difference and she listened to young, old, current, former, paid and unpaid caregivers.
We were lucky enough to have the Lt. Governor keynote the 4th Annual National Caregiving Conference (#NCC19) sponsored by Caregiving.com. The Lt. Governor joined me for a fireside chat in Chicago to kick off our Policy and Advocacy for Family Caregivers track with a national simulcast for caregivers and others unable to attend in person.
In late summer 2019 I had the opportunity to testify before the Senate Special Committee on Aging in the hearing “Alzheimer’s and Other Cognitive Diseases: An Arizona Perspective”. The hearing focused on the health and economic impact of cognitive disease and strategies to prevent and cure them. I shared the platform with Roberta Diaz Brinton, Ph.D. and Director of the Center for Innovation in Brain Science at the University of Arizona as well as Alireza Atri, M.D., Ph.D. and Director at Banner Sun Health Research Institute.
Dr. Brinton is a leading neuroscientist in the field of Alzheimer’s disease, the aging female brain and regenerative therapeutics. She is one of six international researchers awarded $1 million in two year grants in the Alzheimer’s Association Part the Cloud Program.
Michaela (Mikey) Hoag founded Part the Cloud in 2012 after losing her dad to young-onset and more recently losing her mom to Alzheimer’s. Mikey has a deep understanding of the power of her story in creating change. She started in Silicon Valley and now has an international presence with Bill Gates recently joining the work by adding a $10 million award and a commitment from the Alzheimer’s Association for an additional $10 million match.
Part the Cloud’s primary focus is to advance pioneering ideas for early phase human trials and awards potential therapies to save brain cells. Dr. Brinton’s research is a Phase 2a study to test whether an important hormone in brain function (allopregnanolone) is able to regenerate brain cells and restore function in people with Alzheimer’s. I’m proud to share that Dr. Paul Newhouse, M.D. at Vanderbilt University and former geriatric psychiatrist to my mom and me, was also recognized and awarded through Part the Cloud!
Dr. Atri is a cognitive neurologist and neuroscientist, touched by Alzheimer’s in his family. Dr. Atri focused at the Senate hearing on the socioeconomic impact of the disease stating, “We are in a critical period that requires strategic planning, investment and collaborative action because the impact of Alzheimer’s and related dementia is not a ‘them problem’, it’s an ‘us problem’. It’s too big for one sector to solve by itself; it requires collaborative solutions across multiple stakeholders for public/private partnerships”.
In my testimony I spoke as a caregiving survivor about the many opportunities we must enable, lead and exploit in order to support dementia caregivers across Arizona, our nation and our world. I spoke about the need to educate and train primary care physicians, first responders, ER and hospital staffs, caregivers and administrators in local care facilities, major employers and small business owners for whom caregivers currently work, barbers, lawyers and bankers and all who see the impact of this disease in their work day.
Through our collaboration, I felt the power of my own caregiving story.
To kickoff 2020, as Co-Chair of the Desert Southwest Leadership Board I had the opportunity to attend the Alzheimer’s Association National Board meeting in Tucson, Arizona. The 2019 Facts & Figures Report had named Arizona the state with the fastest projected growth rate of dementia, so we were on the agenda at the evening reception as staff and volunteers to share our stories and the work we do to serve our community. The national board members, some touched by this dreadful disease and all working hard to achieve a world without Alzheimer’s and dementia were in attendance.
Harry Johns, CEO of the Alzheimer’s Association; Dr. Maria Carrillo, Chief Science Officer for the Association and Robert Egge, Chief Public Policy Officer and Executive Director of the Alzheimer’s Impact Movement (AIM), the advocacy affiliate for the Association were also in attendance giving encouragement and support to our local efforts.
It continues to take a village to cope, to support and to drive change in the work to end Alzheimer’s and all dementia around the world. Thank you Lt. Governor Stratton, Dr. Brinton, Mikey Hoag, Bill Gates, Dr. Atri, Dr. Newhouse, Dr. Carrillo, Robert Egge and Harry Johns for being role models to the rest of us.
Through collaboration across care, research, philanthropy and public policy we can #EndAlz.