Alzheimer’s deserves to be on the front page

Skip and Meg Curtis, New Hampshire innkeepers, one year after he was diagnosed with early onset Alzheimer's.

Meg Curtis read my recent story about Alzheimer’s in PARADE magazine, and she wasn’t happy. Why was her story, painstakingly told to me in an hourlong interview and several followup e-mails, reduced to a simple, two-graph blurb? Why didn’t we include the photograph of her husband, Skip, robbed of his personality by early-onset dementia at the age of 59, so readers could see how shockingly young he was?

“First of all..this is NATIONAL ALZHEIMER’S MONTH!!!!” she wrote in an e-mail last Sunday when the story disappeared. “What appears on the cover is a pie and most of the magazine is devoted to pies! This disease is reaching epidemic proportions, and every one of us will be affected in some way with this disease. Even Medicare could be bankrupted by the Baby Boomer generation.”

Meg was right. Alzheimer’s deserves much more attention than it gets. The struggles she and Skip faced deserve to be told in all their complexities and glories: Her gut-hollowing realization that she had a whale of a bigger problem than a foreclosure notice when her husband finally admitted he hadn’t paid their mortgage in six months — because he could no longer figure out how.

Dealing with an ill-equipped medical establishment (one doctor had difficulty even uttering the name of the disease). Her efforts to keep her beloved husband at home until the end. How little hope she was given beyond Skip’s participation in clinical trials.

An activist now trying to keep the message alive, Meg made a promise to her husband before his death last year  that she would dedicate the rest of her life to fighting “the monster,” as she calls it.

The federal government spends $3 billion annually on research to combat HIV/AIDS, a disease that kills about 10,000 a year, Meg explains. Which is well and good, but it only spends $450 million towards research for Alzheimer’s, a disease that kills 80,000 Americans a year. That’s the message Meg wants to push: To slay the monster, we’ve all got to step up because there’s not an American alive who won’t personally be affected somehow by this disease.

I knew the facts and figures already before undertaking this freelance assignment, having spent a year reporting on caregiving issues and studying long-term care at the Harvard School of Public Health. I also knew, after meeting with several book agents in the throes of my research, that as one put it: “People don’t want to read about dementia — it’s too depressing, and there’s nothing they can do about it to make it better.”

Writing this brief, 600-word PARADE story taught me a powerful lesson about dealing with grieving families. It’s a notion I heard repeatedly during my recent Dart Center for Journalism and Trauma Ochberg fellowship: As journalists who regularly interview traumatized or marginalized people, we owe it to our subjects to explain exactly what we’re trying to do before we interview them.

I could have been clearer about my intentions and limitations with Meg and more honest with myself about the heavy-handed summarizing that a short piece in a general-audience magazine requires. But as someone who routinely writes 3,000-word narratives, I can’t help but want to know the whole story.

This story was just a sliver of a piece of the long slog that families grappling with Alzheimer’s face. It focused on the warning signs of Alzheimer’s: The moment a woman progresses beyond simply forgetting where she put her keys to becoming lost and confused driving around her own neighborhood; the moment a man tells his wife in all seriousness and apropos of nothing, “An airplane has just landed on the roof.”

Perhaps that’s as much as I should have talked to Meg about in our interview. But as I explained to her last weekend, my future stories on caregiving will very much be informed by the whole of her story. In a talk I’m giving to the American Medical Directors Association in March, I plan to drive many of her suggestions home.

“Don’t sit back in your rocking chair and just wait to die,” Meg advises other families. Join clinic trials through the Alzheimer’s Association. Get a second opinion from a memory-care expert, especially if your family doctor is uncomfortable talking about the disease. Know your limits, and don’t forget to take care of you.

Skip Curtis died last year at 63, four years after he was diagnosed — but not before helping researchers identify the disease in a clinical trial involving spinal fluid. “It gave us a purpose,” Meg told me. “And he felt that he was helping mankind, which was his main purpose all along in life.”

His story has contributed in other ways, too. The PARADE piece alone generated so much response that the national Alzheimer’s office in Washington told me their helplines were jammed the day after the story ran. More than 32 million sets of eyeballs read PARADE, and that’s another statistic that can’t be ignored in these days of dwindling print-media consumption.

People still read, and they still crave stories that reflect their fears and concerns, even short how-to articles that are buried alongside cover stories on Thanksgiving pie.

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  1. Nolan Pegues

     /  February 10, 2013

    In my medical intuitive practice, I have often been consulted by family and friends of those whose parents or loved ones have been diagnosed with Alzheimer’s disease. The origin of this disease is unknown, however much attention is being placed upon the growth of Amyloid plaques in the brain.Amyloid plaques are waxy and translucent protein-polysaccharide complexes that are deposited in organs or tissues during certain diseases. These deposits cause the degeneration of the organ or tissue involved. Amyloid plaques are associated with a number of conditions including Alzheimer’s disease, Hodgkin’s disease and Osteomyelitis…

    My own, personal blog page

  2. bethmacy

     /  December 22, 2011

    Thanks for the wonderful note! You made my day! Keep aiming for that dream, and cheers to you for working so hard. My first job in journalism was for a weekly newspaper in the suburbs of Columbus, Ohio, doing exactly what you’re doing. It’s hard but very important work. Community newspapers seem to be among the few that are doing well because readers get the value of the local and can’t get it anywhere else. Good job being part of that community glue and happy holidays, Beth

  3. slippedink

     /  December 22, 2011

    Beth, I discovered your Blog a few days ago and love it, a warm, real take on journalism. Thank you for taking the time to post about it. I am the editor of a small weekly newspaper in Buffalo, N.Y. I use what little time I have after covering all my boards (town, village, school) to write feature stories. My dream job is to do that full time someday. Anyways, I love your posts and am happy to have discovered them! Have a wonderful day.

  4. Thank you Beth for continuing our story on your blog. Our story is not unique, I’m sure many others in our country have had that very scary “Aha” moment. It was indeed a quick but precious four years as we watched my father slip away from us. It was a tough pill to swallow as he was otherwise a very healthy and fit individual for his age. Increasing funding for research is absolutely imperative….my Dad was on Aricept and Namenda. My Mother in law is on Excelon and Namenda. These drugs truly help to delay the progression of the “monster”, as we call it. Without them, I truly believe we would have had less time with my father than what we did, and my mother in law would be further along in the disease process than what she is. I would encourage family members to make contact with a program that conducts Alzheimer’s research. If we can continue to raise awareness and continue to write and call our elected officials, we can make a difference. I wonder how many of our law makers have a family member or friend with Alzheimer’s? Wouldn’t they want and strive to get the best care and medications available to them? My family was lucky; my mother was able to keep Dad home until the very end. Most are not as fortunate. The researchers are doing their part, the families are doing the best they can despite the enormous stressors they face as caregivers, whether financial, emotional or physical. Now it’s time for Washington and each State to take action. I realize that we are living in a time of budget cuts and financial fears. However, if we put off increasing research funding now, we’re going to wish we had taken action when we look back a few years from now. We need to put Alzheimer’s on the map. Let’s bring this disease out into the open America! Do not turn your back on this because believe me, it may very well haunt you in the future, and sooner than you would have ever imagined. Don’t worry- it’s not taboo to talk about Alzheimer’s. After all, it is the 6th leading cause of death in our country, and will quickly march toward number one.

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