One Caregiver's Story: 'Advocacy Saved My Life'

“I needed to flip the pain and refocus on making certain my experience wasn’t repeated by other families.”

“Our baby boomer generation needs to take on the challenge of curing Alzheimer’s as a legacy issue. It’s time we say, ‘Unacceptable!’”

“I don’t want my son caring for me the way I’ve taken care of my husband and now my mother; it destroys relationships. I don’t want to be remembered that way.”

Meryl Comer’s statements help explain why she’s emerged as a leading advocate in the fight against Alzheimer’s and dementia. I don’t know how she’s found the time or the energy: I’ve yet to come across anyone who’s cared for their loved ones at home as long as Meryl. She’s taken care of her husband for 22 years. And a decade ago her mother, now 98, moved in with them. Both were diagnosed with Alzheimer’s, he with early onset and she with the more classic later age. Meryl has been caring for them round-the-clock with a small, rotating team of nursing aides; she slows the financial bleed by pulling a solo, 12-hour shift.

(And I thought 17 years of caring for my wife Martha with early onset Alzheimer’s were long and hard; she was 50 at the time of diagnosis. The last six were in a nursing home, and I was most fortunate to afford daytime care during the first decade while I continued to edit and publish our regional magazine.)

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This disease, however, has not always subsumed the lives of Meryl and her husband. They were, you might say, a “power couple” in the Washington D.C. area. Meryl was an Emmy award-winning television journalist, and her husband, Dr. Harvey Gralnick, practiced medicine while doing research for over three decades at the National Institutes of Health, as the chief of hematology and oncology, until symptoms foreshadowing Alzheimer’s made it impossible to continue. It isn’t clear what Harvey loved more after Meryl and work—his wine, his clothes, his collection of ties, or his canary yellow Porsche 911, which he whipped through the streets as though he were in Le Mans. They were married in October 1979; it was Harvey’s third marriage and Meryl’s second. Each had a son separated in age by a decade, but it was her son who stepped up to help. In hindsight, Meryl recounts, “We put off a lot of living because we were too busy working.”

She saw telltale signs, as did Harvey’s colleagues, long before he was diagnosed with early onset in 1997, when he was 57. But she couldn’t figure out what was going on.

Nor could their doctors. “Harvey was misdiagnosed for years—stress; depression; Lyme’s disease; mad cow’s disease; pernicious anemia; you name it. Alzheimer’s never occurred to the doctors because Harvey was so young, physically fit, and accomplished. In fact the term ‘Alzheimer’s’ was rarely used more than two decades ago.”

But it all came to a head in a couple of public episodes. Meryl had driven Harvey to a conference where he was speaking to 400 other doctors. “He got lost in the middle of the speech, and the doctors in the audience started laughing. Harvey grew real quiet.” Afterwards, Harvey flew alone to Europe for a medical conference, despite Meryl’s objections. “I got a call from a doctor there that something was wrong. It took me two days to get Harvey back home. We went directly to a neurologist, where he was misdiagnosed again.” 

Harvey left the National Institutes of Health shortly afterwards. “The administration had begun to wean Harvey away from his duties until he had nothing left to do.”

He subsequently entered The Johns Hopkins Hospital under an assumed name. “I didn’t want his reputation ruined.” He was there for 2-1/2 months while Meryl tried to find him an assisted living facility (ALF). “But no one would take him. He was too young, too strong, and too dangerous. It took four orderlies to hold Harvey for a blood draw.” Moreover, the ALF cost $15,000 a month. They were without long-term care insurance so Meryl, in her prime and several years younger than Harvey, reluctantly decided to give up her TV career to care for him at home.

Like many caregivers, Meryl searched for any possible way out of this crisis. “I even went to Europe to get a med before it was FDA-approved in the U.S. It cost $200 a pill. I couldn’t buy many but got enough to test to see if it might work. It helped slightly, but not for long.

“When you live in the margins with a loved one who’s sick, you’ll try anything to relieve their suffering, won’t you?” 

This thumbnail sketch of their story offers insight into Meryl’s passionate drive that a cure be found now! for Alzheimer’s—both for the ones living with the disease and for their caregivers. Any family going through such stress would want a cure, but few persons are driven to the lengths of Meryl’s pursuit.

The advocate

The advocate

Since 2007, she has served as President and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative. (That’s the Geoffrey Beene, the clothing and fashion designer.) Meryl also is a founding member of the UsAgainstAlzheimer’s movement and a co-founder of its network offshoot, WomenAgainstAlzheimer’s. She’s been a driving force behind the group’s “A-LIST”. (More about that later). Meryl also serves as a co-Principal Investigator of the The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network, which works in conjunction with the Mayo Clinic. In that role, she helps steer their research to include not only the patient’s wellbeing but also the caregiver’s.

And if that weren’t enough to do, then this: In the midst of all her responsibilities, both personal and advocacy, Meryl somehow found the energy and focus to write an unflinching account of their experiences in Slow Dancing with a Stranger: Lost and Found  in the Age of Alzheimer’s. This New York Times bestseller was published by HarperOne in September 2014. (Her book’s net proceeds go to Alzheimer’s research.)

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Among Meryl’s many attributes is her candor. “Alzheimer’s has taken its toll on me. I’ve been isolated and lonely. I’ve lost my prime. And I’ve lost a lot of friends. I didn’t anticipate I was losing my life when the doctors told me the disease wouldn’t last too long. They just didn’t know.”

Moreover, she says, after years of care she began to experience symptoms similar to PTSD. “I probably get 4 to 4-1/2 hours of sleep a night…in bits and pieces.” (Meryl’s emphasis, not mine.)

Meryl never received help from Harvey’s medical friends. “His colleagues wouldn’t even walk into the house. ‘I’m too afraid to look at him,’ one doctor friend told me.”

“Public advocacy has saved my life,” says Meryl when asked why she’s poured so much of herself into these often time-conflicted roles.

“No matter what I do for my husband, the disease wins. So I decided to fight it at a different level. Advocacy has validated my experience—it energizes me.”

But Meryl’s advocacy is not just about her.

When Harvey was diagnosed two decades ago Alzheimer’s was “steeped in stigma,” she says in her book. “People did not like to discuss it.” But she says today, “People no longer can ignore it. It’s a global crisis now. The United States will soon become a ‘super-aging country’ in which half the population is 65 or older.”

This stigma, she says, is a major reason why half of those living with dementia or Alzheimer’s are not diagnosed, or are still misdiagnosed. 

She points to a study commissioned by Merrill Lynch in which “people cite Alzheimer’s as the scariest health condition of later life (54 percent)—more than cancer, strokes, heart disease, diabetes, and arthritis combined.” Alzheimer’s and dementia affect not only the persons living with it and their primary caregivers, but also their children and grandchildren. Their friends, too.

The care partner

The care partner

Two encounters transformed Meryl from an isolated, lonely caregiver to an engaged public advocate. First was the request by the trustee of the Geoffrey Beene Foundation to take on the paid position she’s had for the past dozen years. (That no longer exists, however, after the Beene company was sold last year. “I’ve got to figure out how to continue make a living.”)

Under Meryl’s direction, the Beene foundation launched a virtual study into caregiving’s long-term impact on caregivers. “We found that more than half the caregivers who responded were operating at less than 50 percent of what is considered a normal cognitive level.” Anecdotal information also indicates that many caregivers die before their loved ones.

“Caregivers have been overlooked for too long. They get so wrapped up in caring for their loved ones, they forget who they are.”

Her second transformation came a decade ago when she teamed up with George Vradenburg and his wife Trish, now deceased. “I worked with them to help start UsAgainstAlzheimer’s (founded in 2010). They were the ones with the dollars and political clout to make it happen. We became fast friends.” (Prior to Vradenburg’s full-time philanthropy, his legal career encompassed serving as chief counsel for CBS and AOL, and as a senior executive at AOL Time Warner and Fox Broadcasting.)

One of Meryl’s pet projects is the UsAgainstAlzheimer’s “A-LIST”. The volunteer members on this list comprise a first-of-its-kind community who live with, or are at risk for Alzheimer’s—as well as mild cognitive impairment, and other dementia. The group also includes care partners, both current and former. Meryl pushed the concept when it became apparent that clinical research organizations were unable to find enough trial participants in a timely manner.

Those who have signed up are surveyed on a confidential, voluntary basis about a variety of issues, such as patient-doctor relationships; the varying impacts on diverse communities; progressive stages of the diseases; caregiver health issues; and the use of prevalent technology. The A-LIST website states that it is a private, HIPAA-compliant database. Since its introduction in 2017, at least fifteen studies have been completed. Its most recent survey, as a matter of fact, helped prompt a conversation on CBS This Morning about the evolving attitudes over love and relationships among couples who live with Alzheimer’s. (Over 1,000 persons responded to this survey; its results can be found here.)

“The A-LIST is 6,000 strong right now,” Meryl says, “but we hope this year to move up to 10,000 volunteers.”

If you’re interested in learning more or signing up, click the A-LIST here. (As a former caregiver, I’ve signed on.)   

In closing I asked Meryl: Would you have done anything differently over these past 22 years?

“I don’t play those games with myself. I’m not bitter about my choices, especially seeing that external care is no better today than it was 20 years ago. I’ve known isolation because of this disease, but I’ve never said ‘woe is me.’ I’ve always looked forward. Not until I wrote my book did I take stock of what I’ve been through.”

How would you describe yourself today?

There was a pause.

“You never know what your strengths are until you’re in a crisis.”

What trait do you see in yourself that you didn’t realize two decades ago?

Another pause.

“My resiliency.”

Thank you, Meryl, for being willing to share your story, to describe your advocacy work, and to pass forward your hard-earned insights. Your story, your drive, and your caring encourage an untold number who seek ways through their own crises.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1 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.  

PS2 You may have seen this before, but if you haven’t it is well worth checking out. My friend Bob Beckett in Nashville has been caring for his wife for over 12 years now. He’s compiled the most comprehensive list of resources for dementia and Alzheimer’s I’ve seen to date. I wish I’d found something like this when my wife Martha was diagnosed in 1997.  

PS3 My apology if you’re tired of seeing me promote this Alzheimer’s stamp. But if you don’t know the story behind this stamp’s existence—it’s an interesting one—you can check it out here. By now you surely know that the net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of February, the 15th month since its issue, over 6-million stamps have been sold, raising $840,000. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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PS4  My 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. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.

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