By Lynda Everman and Don Wendorf
Stolen Memories: An Alzheimer’s Stole Ministry & Tallit Initiative describes the use of hand-sewn, individualized stoles and stole-style tallitot in advocacy for Alzheimer’s and related dementias, but in the words of (Ret.) Bishop Kenneth L. Carder, author of Ministry with the Forgotten, Stolen Memories “is more than a creative book; it is an invitation to join a movement to bring hope and healing to people stigmatized and marginalized by society.”
The idea for Stolen Memories grew out of visits Don and I made to 40+ pastors, priests, rabbis, and congregational care staff in 2018 as part of our Dementia Friendly Faith Communities Initiative. As we sat in pastors’ offices, we became aware of many and varied pastors’ stoles; and, as we commented on the stoles, we began to hear deeply personal stories of people and events that were meaningful to the clergy members. More and more, we were struck by the juxtaposition of the stoles “holding memories” and of dementia stealing memories. As one who has always loved the textile arts, the idea of fabric and stoles “holding memories” and telling stories resonated strongly with me. I began to think about what a pastor’s stole or rabbi’s tallit could convey in terms of support and advocacy with Alzheimer’s and related dementias.
And so I made my first stole as a gift for a pastor who is living with dementia and the project and book grew from there. We see the stoles and tallitot as vital symbols of our efforts to initiate or expand dementia friendly faith communities that are welcoming to all despite the limitations of cognitive impairment; communities that enable worship, support care partners, educate about dementia, and promote brain health. Wearing the Alzheimer’s stole or tallit, especially in those months that are designated for dementia awareness, is meant to increase awareness, to share stories, and to spark dialogue and ideas. Even more, wearing it is meant to inspire and energize: to generate concrete action to make a difference in the lives of all affected by these diseases.
The responses congregations may make to persons living with dementia, their care partners and their loved ones became the heart of our book with pictures of about 25 clergy members wearing their stoles and tallitot and their reflections: reminiscences about people they’ve known with dementia, scriptures or prayers the stole or tallit brings to mind, and what this ministry means to them. And we love that these clergy advocates are also wearing their stoles/tallitot beyond the walls of their faith communities – such as when they make make visits to their representatives in Congress, or when they speak at conferences and training sessions. They truly are ClergyAgainstAlzheimer’s!
In large part, Stolen Memories is about clergy talking to clergy. It’s a short and gentle introduction to dementia and congregational care of families facing dementia and would make an excellent gift for every pastor, priest and rabbi.
To date I’ve made and given away over 50 stoles and tallitot and no two are the same! But we’ve also included simple step-by-step instructions and photos on how readers can piece and sew their own stoles and tallitot and it’s our dream to recruit other individuals and sewing groups to this ministry.
Creating these stoles and tallitot is a labor of love for me. Don and I have witnessed that “fabric holds memories” and we hope the making and wearing of the Alzheimer’s stoles and tallitot will help promote a world in which our memories last our lifetimes.
We would be grateful to all who help us spread the word.
Lynda Everman has spent most of her adult life as a caregiver: for her mom who was paralyzed by a stroke, her dad with vascular
dementia, and her husband with Alzheimer’s Disease. These experiences inspired her advocacy for increased Alzheimer’s funding for care and a cure.
She and fellow advocate Kathy Siggins conducted a multi-year national campaign for a semipostal (awareness and fundraising) stamp for Alzheimer’s research. As a result of their efforts, the first ever Alzheimer’s Disease Research Semipostal Stamp was released by the US Postal Service in November 2017. As of July 2019, this stamp has raised over $953,000 for NIH funded research.
Lynda is a founding member of three national networks under the umbrella of UsAgainstAlzheimer’s and served as founder and convener of ClergyAgainstAlzheimer’s. She is an editor and contributor to Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers. She and her husband, Dr. Don Wendorf, have served as editors for The Leader’s Guide for Seasons of Caring and Treasure for Alzheimer’s, both written by Dr. Richard Morgan. They served as Senior Editors for Dementia-friendly Worship: A Multi-faith Handbook for Chaplains, Clergy and Faith Communities and co-authored Stolen Memories: An Alzheimer’s Stole Ministry and Tallit Initiative. Lynda is on the Board of Beating Alzheimer’s By Embracing Science (B.A.B.E.S.) and has been recognized by Maria Shriver as a Woman of Influence in the Women’s Alzheimer’s Movement and included on her “Big Wall of Empowerment.”
Lynda is a dedicated and outspoken advocate for those living with Alzheimer’s and their care partners and, in September 2018, was honored with the inaugural UsAgainstAlzheimer’s Advocate of the Year Award.
Don Wendorf, Psy.D. is a retired psychologist and marriage & family therapist, who practiced over 40 years, specializing in marriage therapy. He retired in 2013 to be the full-time caregiver for his increasingly stroke-disabled wife, Susan, after taking care of her while working for 15 years. She passed away in March 2014. He also helped take care of his mother-in-law (cancer), father (Parkinson’s) and mother (Alzheimer’s). Don currently serves on the Board of Cognitive Dynamics Foundation.
Don has been a professional musician since his high school days, playing in a variety of jazz and bluegrass bands as well as writing songs. He combined all these interests and experiences in two books, one on marriage (Love Lyrics: a Musical Marital Manual) and one on the emotional struggles in caregiving (Caregiver Carols: a Musical, Emotional Memoir), both written primarily in song lyrics to be more accessible and memorable and to ease the pain a bit.
Don and his wife, Lynda, met when he contributed to her book, Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers, and together they have edited several additional books for caregivers. They are advocates for increased funding for research on Alzheimer’s and related dementias and regularly speak to conferences, churches and advocacy groups on topics relating to dementia and caregiving.
