Choosing Hope Over Fear: How Working Against Alzheimer’s Brought 2 Inspiring People Together

“One has to decide whether one’s fears or one’s hopes are what should matter most.”- Atul Gawande

As we go through life we meet people who impact us deeply, whose lives harmonize with ours in ways that defy orchestration. Often, we’re not sure how we came to know them, but we sense these relationships were meant to be, serving the greater good.

Lynda Everman and Don Wendorf are two such people in my life. I’d like to share a bit of their remarkable story of loss turned to love, and of their inspiring advocacy for cure and care for those with Alzheimer’s and other causes of dementia.

Lynda spent 18 years as an Alzheimer’s caregiver, both for her father and her husband, Richard, who was diagnosed with mild cognitive impairment at age 57, and who died in 2011. She has written poignantly about her experience, as in this article for the LEAD Coalition Newsletter: “At first, and still today, it was and remains very painful to share our personal experience; but I began. Somehow, as Richard waned, I became stronger for both of us.” She did, indeed. It nearly would require an actuarial firm to chronicle Lynda’s advocacy work since before Richard’s death until the present.

[June Is Alzheimer’s & Brain Awareness Month: Share Your Alzheimer’s & Caregiving Story]

Early on, Lynda developed a passion for a stamp like the one for breast cancer, that would show support for those impacted by Alzheimer’s, increase awareness beyond the dementia community, and raise much-needed funding for research. So in 2010 she teamed up with fellow advocate Kathy Siggins in a nationwide campaign for a semi postal stamp to raise funds for Alzheimer’s research, bringing Lynda out of the shadows and into the national spotlight. Her Help Stamp Out Alzheimer’s Community Facebook Page is well-known in dementia advocacy circles.

In addition, Lynda is a founding member of four national networks within the UsAgainstAlzheimer’s organization: ActivistsAgainstAlzheimer’s, WomenAgainstAlzheimer’s, the Faith United Against Alzheimer’s Coalition, and ClergyAgainstAlzheimer’s. It was through a project of the Clergy Network, and a series of seemingly random connections and introductions, that she met fellow caregiver and advocate, Don. Hindsight suggests providence, rather than chance, was at play, as these soulmates were drawn together in healing union through their passion for a common cause.

Don Wendorf, Psy.D., LMFT, a psychologist and marriage and family therapist, was the caregiver for his wife, Susan Black, until her death in 2014 from vascular dementia. A professional musician who masterfully plays anything from drums to hammered dulcimer, Don wrote Caregiver Carols: A Musical, Emotional Memoir, in his words, “to take care of my own emotions while still caregiving,” and “to encourage other caregivers that their own feelings are tough but normal and manageable, and that they are not alone.” This unique volume deftly weaves together Don’s more than 40 years’ experience as a psychologist and marriage and family therapist, his own personal struggles in the rigors of caregiving and the beautiful healing power of lyrics and melodies written even as he was living out the loving commitment of marriage.

[If You Are Affected by Alzheimer’s, You Are Not Alone: 4 Lessons on Courage and & Facing Fear]

As the Clergy Network was coming together, Lynda asked me to become a founder and medical advisor to the group (I am both a Neurologist and secondary caregiver – my father, Lester, died of Alzheimer’s in 2007). As Don accurately states, “Lynda is a connector who takes her own advocacy and caring and builds it into networks of like-minded individuals who become an even stronger force for change.” On our initial conference call, we decided our first project should be a book of meditations for caregivers, and Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers began to take shape, as writers were recruited. A friend of a friend of a friend contacted Don to write a submission for the volume, and it was on a late night call from Lynda’s California home to Don in Alabama that their relationship and mutual advocacy mission were born.

Lynda and Don acknowledge that their relationship was able to develop because of the healing that had already taken place while working through the loss of their spouses. These shared experiences created a bond of understanding in which the love for their former spouses was honored without threatening their new relationship. They were able to speak openly and emotionally in a trusting space, respecting each other as “members of a very special club – we had paid our dues.”

Notes Don: “Lynda sees her healing as coming though service to others, shifting focus from herself and her own grief toward living a life that makes a difference to others. She believes that life is for the living, and doesn’t want to stay stuck in sadness or loss. She doesn’t want others to struggle alone though the difficulties that she and Richard experienced, and hopes that her advocacy will advance a cure. Her work on behalf of the Alzheimer’s disease semi postal stamp thrust her into the public arena, and she reached out to others to ask for help in advancing this initiative. It helped to hone her own advocacy for public policy and legislation on behalf of families dealing with dementia.”

[An Unexpected Gift of Alzheimer’s: Creative Expression]

Both Lynda and Don feel that their burgeoning relationship helped to further the healing they had experienced individually, allowing them to “talk about their experiences with someone who really understood and cared, but who also could see those experiences and emotions from the outside and help us to move forward.”

And move forward they did – down the aisle of matrimony – joining their lives together on May 21, 2016!

Don & Lynda Alzheimer's Daniel Potts

Lynda and Don have found great joy in collaborating on projects that support other caregivers – in addition to Seasons of Caring and the semi postal, they have also served as editors on Leader’s Guide for Seasons of Caring and Treasure for Alzheimer’s, both written by Dr. Richard Morgan, a fellow Clergy Network founder and well-known author on issues of aging and caregiving.

[Like a River: Alzheimer’s Teaches Us to Embrace, Then Release, Find the Beauty in All Things]

As a friend and fellow advocate, I’ve been among the fortunate ones who have witnessed Lynda’s and Don’s beautiful relationship unfold. You really can’t separate out their relationship from their individual personhood and character, their very real experiences as Alzheimer’s caregivers, their mission to bear the torch for others, and their insatiable joy in living the lives that they’ve been given together.

Whether working side by side on an advocacy project or hiking and enjoying nature, toe tapping to some bluegrass or connecting others around a worthy cause, Lynda and Don have clearly decided that one’s hopes should matter more than one’s fears, and that the most important parts of life are, indeed, relationships.

Lynda recently wrote to me, “Don and I share your view that our work is not about us, but in service to others, simply because it is the right thing to do and because we have been given so much.”

In the realm of Alzheimer’s and dementia, stories rarely have happy endings, and it’s hard to peer through the daily darkness to any shimmer of distant light. But Lynda and Don had the courage to keep their candles burning, and now lift their unified flame of service and advocacy, fueled with hope and compassion.

[Read Maria Shriver’s ‘I’ve Been Thinking’ essay]

The late, great Muhammad Ali said it well: “Service to others is the rent you pay for your room here on earth.”

Thanks, Lynda and Don, for embracing hope and each other, the mission for cure and care, and for sharing your “room here on earth” with all of us. Your Help Stamp OUT Alzheimer’s motto says it well: “Together We Can — and Will — Make a Difference!” #ENDALZ #cultureofcompassion

To support the Alzheimer’s disease semipostal stamp effort, log onto the website for the Office of Inspector General for the USPS and leave a comment in favor of an Alzheimer’s Disease semi-postal stamp.

Daniel C. Potts, MD, FAAN

 


{Image credit: Pixabay}

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