These men and women stand among the bravest people I know. All live with Alzheimer’s or another dementia, a condition that’s growing in epidemic proportions and that’s continued to be stigmatized for too long by our culture. And the fear of it seems to be soaring even faster.
All of them decided to live as actively as they could rather than withdraw into seclusion.
And all chose to step up as public advocates fighting this disease on their terms, not its—fighting for themselves and their families; and fighting for all who live with these disabilities, for their caregivers, and for future generations.
You know the late Glenn Campbell and his story, how he continued to perform until he could not. And you’re aware of Sandra Day O’Connor’s recent announcement that she now lives with dementia after having retired in 2006 from the U.S. Supreme Court to care for her husband with dementia. The others you may not know, although within the orbit of Alzheimer’s their stars burn bright. Greg O’Brien is a career journalist and investigative reporter in Cape Cod who shares what it’s like to live with this disease, both as a regular contributor on NPR and in his book On Pluto: Inside the Mind of Alzheimer’s. Dr. David Compton and I grew up in the same small Tennessee town; he’s a respected family practice doctor in the Knoxville area, now retired, who’s quite open about sharing his story, this being his most recent post in my blog. Brian LeBlanc also is an advocate who speaks to audiences large and small while writing his blog, Alzheimer’s: The Journey—I Have Alzheimer’s BUT It Doesn’t Have Me!
And then there’s Rev. Dr. Cynthia Huling Hummel. You may remember her prayer for World Alzheimer’s Month that I posted in September. Our brief conversation intrigued me. I’ve encountered few people with her range of talent, interest, and energy.
Her memory loss at critical moments in her ministry was hard to accept, she says. And it took a long while to sift through the news that she may have the condition similar to her mother and uncle, both of whom lived and died with Alzheimer’s.
Yet what Cynthia has done—and still does in many instances—is impressive. A singer and guitarist inducted into the New York State Country Music Hall of Honor; an artist; author of four books; ordained pastor, now retired after 22 years; two advanced degrees; former Peace Corps volunteer; kayaker and long-distance swimmer; interviewed by NBC Nightly News; her story published two years ago in Woman’s Day magazine; adviser and speaker for the Alzheimer’s Association; appointed to the Department of Health and Human Services (HHS) Advisory Council on Alzheimer’s Research, Care, and Services; a mom of two kids now adults and last but not least, “a Grandma!”
“It’s always been on my heart to help others,” says this oldest of six siblings. “Our parents nudged each of us to get a part-time job and volunteer in the community. I was a Sunshine Girl in a local nursing home. Sort of like a candy-striper but in yellow.”
Cynthia graduated in 1976 with a degree in elementary education from Rutgers College, a member of its first class of women. She promptly volunteered for the Peace Corps in Jamaica, helping establish a special education program in Santa Cruz’s School of Hope. “That was amazing, life-changing work.”
Following that, Cynthia went to work in corporate America, spending 15 years with Dun & Bradstreet (D&B) as a technical communications specialist. “I loved that work and got three national awards for excellence in customer service.” She married Jon, and they had Emily and Will, now 36 and 34, respectively.
Meanwhile, as though Cynthia didn’t have enough to do, she decided to work on a Master of Divinity degree at the New Brunswick Theological Seminary in New Jersey. “My former pastor encouraged me to go to seminary because of my love of Christian education. When I toured the school I noticed a mug rack for students in the social hall. And in that moment I could ‘see’ my mug on that rack. I knew then that God was calling me to pastoral ministry.”
“I spent five years working for that degree, and I wanted to quit more than a few times. I was still at D&B and was interning as a chaplain at a local hospital when Will got Lyme disease in the third grade. I would finish my hospital shift as chaplain and then go to his hospital. It was hard doing all this at the same time, but my associates at seminary wouldn’t let me quit. I’m glad they didn’t.”
Cynthia was ordained in 1996 as a Presbyterian pastor, and she and her family moved to Lyons in western New York (pop. 5,000 and change) to assume a solo pastorate. Apparently not one to rest, she became chaplain for the Lyons Fire Department and later served on the board of the New York State Association of Fire Chaplains. She also joined her first band in 1999. “I’ve sung my whole life…Broadway show tunes, country, sacred music, folk songs, classic rock n’ roll. Patsy Cline’s my favorite country singer. Others I love are Julie Andrews, Aretha, Cher, Linda Ronstadt, Karen Carpenter, Kate Smith, Barbra Streisand—so many amazing women singers.”
Cynthia clearly is ambitious in an admirable sense, for while serving the church in Lyons she decided to seek a doctorate with Chicago’s McCormick Theological Seminary.
But while pursuing those studies, something changed.
“When I was preparing to defend my thesis, signs that something may be wrong began to appear.” It was the spring of 2003. “Most people in a doctoral program can rattle off the books they’ve read,” she told Woman’s Day, “but all I could tell you was the first three courses I’d taken. I could name only one of my professors. I didn’t remember any of my fellow students…It was terrifying because I was in the middle of this program that I’d worked so hard to complete.”
Cynthia sought out several doctors to determine the problem, but none of their diagnoses made sense—work-related stress, a recent head injury, menopause. “Because I was young,” she told Woman’s Day, “no one suspected Alzheimer’s disease.” She was 49 years old.
After earning her doctorate and working in Lyons for a decade, she and her family moved to Waverly, an even smaller village in western New York, to assume a solo pastorate in the Presbyterian church. That was 2007.
Then heartache struck the next year. After 30 years of marriage, husband Jon decided “to set out on a new chapter in his life. This was so distressing,” Cynthia says. “Jon’s a good man. It’s hard being a pastor, but it’s also hard being the spouse of a pastor.” They are in touch regularly, she says, and see each other at family gatherings.
Finally in 2011—eight long years after the first warning signs and after so many false diagnoses—Cynthia was told she has “amnestic mild cognitive impairment,” or aMCI, which often is a prelude to Alzheimer’s. “I was relieved in some ways to have an answer, but it was still very hard.”
The first person she told was a band buddy at rehearsal. “When I told my church board someone piped up, ‘Well…it all makes sense now.’ That hurt me so; I thought I’d been covering up my cognitive difficulties pretty well.” Cynthia stepped down as pastor, after which she wrote a column in the local paper explaining why.
She moved out of the church’s manse, or house, and out of town, up I-86 to nearby Elmira, where she knew only one person. “I had to get out of Waverly. How do you define yourself in a community when you no longer know who you are?”
“I felt so worthless and sad. I was in the prime of my life, and everything was falling apart. I lost my ministry, my identity, and my purpose. I didn't know who I was. It was just awful. I was angry at myself. Angry at God. And I was desperately lonely.” By this time, her adult son and daughter had started their own lives elsewhere.
Months dragged by.
“I saw an ad in the Elmira paper for an eight-week class on Alzheimer’s. The first session I sat in my car and cried; I didn’t want to go in. I was hoping to make some close friends but that didn’t happen. I was the only one without a care partner.”
Cynthia soon happened on a church that offered a free meal. “Oh, maybe I can meet someone here,” she remembers thinking. “‘What’s your name and zip code?’ the lady at the door asked without looking up and directed me to a table where I sat down by myself. No one came over to sit with me or invited me to join them. I saw some church members laughing and talking, having fun together. I finished eating and left.”
About this time, Cynthia discovered Elmira College, a private school founded in 1855, which offered continuing education courses for free to those 65 and over. “I’m not 65 yet,” she told the dean, “but I’ve been diagnosed with a dementia. Can I audit any of your classes?” The dean exclaimed, “Welcome to Elmira College!”
Cynthia will audit her 36th class starting January 2019. “I’ve taken everything from French to Ice Skating, from Medical Ethics to Art History and Children’s Literature.”
“I usually don’t remember squat, but I love it,” she told Woman’s Day. “I’m incredibly blessed to be able to sit in on such interesting classes,” she shares with me now. That apparently was a key opening for her new life.
Another opening was a person who helped guide her through this crisis. “I’m deeply grateful for my spiritual counselor who helped me change my perspective—from sadness to feeling more at peace. I began to look at what was happening through the lens of faith, through remembering God’s promises, such as: ‘For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.’” (She quotes Jeremiah 29:11)
“My change in outlook has been gradual, like a flower unfolding.”
“Whenever I focused on ‘poor me,’ I often remembered my mother’s solid wisdom: ‘No one ever promised you a rose garden’ and ‘Into every life a little rain must fall.’”
“When we focus on ourselves and our troubles, that’s when feelings of worthlessness fester. When we wallow in grief, we become isolated and get stuck.”
“Once I started to focus on what I could still do, instead of on the things I could no longer do, I was able to shift gears.”
And shift gears she has.
Two years ago Cynthia was told that her condition has progressed to early-stage Alzheimer’s. Yet today her voice fills our phone conversation with joy and hope: “God has given me a new ministry—to those who live with Alzheimer’s and dementia as well as to their care partners.”
“My ministry now is to help others reframe their experiences. Sharing stories is really important. It helps people to connect and remember a more positive story in their lives.”
Volunteering is “the best medicine there is.” Cynthia and a friend recently started Faithful Friends Respite Care, in which they give caregivers a much-needed break. Cynthia also leads an Alzheimer’s support group.
Physical activity is vital, says this reconfigured pastor. Social engagement is, too. So Cynthia swims several times a week in the local pool and long-distance in a nearby lake, weather permitting. She also kayaks on the Chemung River and the nearby Finger Lakes. She started a kayaking club and named it “Rolling on a River.”
“I’m connected to three different arts and dementia groups.” It’s out of such a group that Cynthia decided to make a mask describing what it’s like to live with dementia. But dementia doesn’t have just one face. So that one mask evolved into 30, which she published in her book Unmasking Alzheimer’s: The Memories Behind the Masks.
One example is the mask shown above, ‘A Feather in Your Cap.’ “Dementia doesn’t care who you are and what you may have achieved. It doesn’t care how many ‘feathers you have in your cap’—whether you are rich or poor, whether you dropped out of high school or have advanced degrees.”
In addition to all these activities, “I still preach a lot as a substitute.” Cynthia had written out all her sermons so she just picks one and talks from that. (The churches know of her condition in advance.) “One Sunday I went to read from a Gospel and I couldn’t find it. A lady opened a Bible and handed it to me, pointing to the passage: ‘We’re right here, Pastor.’”
“When church becomes a place of worry instead of a place of worship, someone needs to gently tell me. Then I’ll know it’s time to stop preaching and look for other ways to serve.”
Now 65, Cynthia and the Country Magic band play twice a month at nursing homes plus other gigs for benefits and banquets. “I have so much fun with the band. I love to sing.”
One more insight, but hardly Cynthia’s last one: “I also hold onto the hope that researchers will find a treatment, an intervention, a cure. But it's not enough for me to pray for these things and sit back, waiting for something to happen. I’ve dedicated my life to being part of a cure and that's one reason I’m so happy to participate in an Alzheimer's clinical trial.”
“In fact, when the time comes I’ve agreed to donate my brain to research; I carry such a card in my wallet. And January 6-10, I’m heading back to the University of Rochester for a battery of tests—PET scans, MRI’s, neuropsychological tests, and a spinal tap. Year 9!”
Thank you, Cynthia, for sharing your insights and story. You make me—and I suspect more than a few others—misty-eyed with joy and hope. May you and all reading this have a wonderful holiday, celebrating your faith in ways replete with meaning.
Also, I appreciate Guideposts magazine picking up a slice of our story in its recent December issue.
PS1My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed, I was 52. Our children were in high school and college.
PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.
PS3 I bought 200 Alzheimer’s stamps for my holiday card mailing. The net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of November, the stamp’s first full year on the market, 5.1-million stamps were sold, raising $726,000. Join me and thousands of others and Help Stamp Out Alzheimer’s.