A friend from our high school days told me recently that a member of their family had been under a great deal of stress over the past year or so—personal, work, and financial—and is having memory issues, such as forgetting names and appointments and reasons for running an errand. After seeing a series of physicians with inconclusive results, this family member, now 52, is traveling to a nearby university medical center for further testing by its team of doctors.
“You’ve been through this, Carlen. What information do you have that can help us?”
Hearing all this, our family’s experience two decades ago echoed loudly through the halls of my memory—the stress of a year-long state legislative campaign, which my wife lost by 20 votes; her listlessness following that loss; the forgetting of appointments; the trouble getting her to a neurologist; the shock of the diagnosis.
Rachel, David, Martha, Kathryn and me
four years before our world imploded.
With my friend’s request, I was surprised to realize that until now I’d never stepped back to the time of Martha’s diagnosis to ask myself: “What information is available now that I would like to have had then for Martha and me and our children?”
Information and research today are far superior and more plentiful than were available in 1997, when my wife Martha was diagnosed at age 50 with early onset Alzheimer’s, an era that I now call the “Dark Ages of Dementia”.
You might be asking yourself, “So what does this have to do with me? I’ve been living with this disease for far too long.” Or “I’ve been caring for my loved one for so many years. How can this information help us now?”
I can’t answer that for you, but this might be a good cross-check for whatever stage you find yourself today. Also, as we know only too well, with each new day too many family and friends are being hit with this kind of devastating news. In fact, Alzheimer’s and other dementia are steamrolling into the future with such massive force that four former U.S. Surgeon Generals recently warned in an Op-Ed that “Dementia Is Our Top Public Health Crisis.”
The posts and ideas that I’m sharing here will not be new for many of you; some of you signed up for my blog from its start in the fall of 2015. And a number of you have read my book, A Path Revealed, which was published a year later.
Reviewing what I compiled for my friend’s family (and having spent a career in journalism as a magazine editor and publisher), I believe this information would make a good “starter library” for anyone who’s staring down the barrel of dementia. This is not a fast read; it cannot be swallowed whole. There’s a lot of good information here, but do take it a step at a time, setting your own priority as to what gets your attention. And keep in mind that this is by no means a complete bookshelf of resources; you may have others you want to add.
The following are among the posts and information that I shared with my friend and what I would share with Martha and me in 1997 if that were possible. AND PLEASE NOTE: I am offering no medical suggestions here. That’s for you to discuss with your doctors.
What This Care Partner Is Still Learning Years Later … This is the most comprehensive, to-the-point, self-help guide I’ve encountered that’s been put together by a caregiver. My friend Bob Beckett lives outside Nashville and has been caring for his wife for a decade or so.
Alzheimer’s Association … This should be one of your first stops. The association is much stronger today at the local level than it was two decades ago when Martha was diagnosed. Still, some local chapters offer better services than others, such as support groups, memory cafes, and educational classes. And in some areas of the country, independent associations such as Alzheimer’s Texas and Alzheimer’s Tennessee Inc. have sprung up for a variety of reasons. So do your homework.
“You either get on with living, or get on with dying. I’m getting on with living” … Dr. David Compton is a retired family physician in Oak Ridge, TN, who grew up in my hometown, nine years my junior. He was diagnosed in 2015 with mild cognitive impairment (MCI). I’ve been following David in a post each year since 2016. It took him a while to evolve into his current attitude.
In the Face of Fear, Grace … Rev. Cynthia Huling Hummel’s story of living with early Alzheimer’s is inspiring. She had to step down from the pulpit because of the disease’s limitations, but she still pinch-hits for churches, sings in a country band, travels and speaks, sculpts, swims long distance, audits classes at a nearby college, and is enrolled in clinical trials. As with David Compton (and many of us), Cynthia had a lot of negative stuff to work through.
UsAgainstAlzheimer’s … Among its many other services, this advocacy organization does an excellent job of curating and publishing each weekday the latest news in research, policy, personal stories, and patient and caregiver advocacy.
31 Lessons Learned from Persons Living with Dementia & Care Partners … Dr. Daniel C. Potts is a neurologist with the VA in Tuscaloosa, AL. I haven’t come across another doctor so engaged in advocacy work for those living with dementia and their care partners. His insights in The Joy in Knowing and in Being Known are most poignant.
A Conversation with My Wife’s Neurologist … I talked with Dr. Steven Cohen, a former researcher and now retired physician, in June 2018, four years after Martha died. He touches on fear, worrying, burnout, and the progress of research, among other things.
It’s About Quality of Life, Not Quantity … Carol Bradley Bursack posts a daily email primarily for caregivers. She writes online for HealthCentral and AgingCare, as well as for a string of newspapers. Not all relate to dementia issues but many do. Hers is one of the most practical voices I’ve come across online.
The 36-Hour Day … This is the classic guidebook for caregivers, now in its sixth edition. First published in 1981, it was one of the few resources around when my wife was diagnosed. Despite an overabundance of guidebooks today, it still ranks right at the top. It’s stood the test of time and is a good baseline read through which to sift your questions.
To Test for Genetics, or Not? Read On … You may be interested in the genetic aspects of Jamie Tyrone’s inspiring personal story, but I’m also sharing it for the insights of this book’s co-author regarding the solid research that has come out recently into the preventive promise of nutrition and physical exercise. Dr. Marwan Sabbagh is a neurologist and expert in Alzheimer’s diagnosis, treatment, and research; he’s the executive director of the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas.
Illuminating the Dark Heart of Dementia … Only in the last few years have spiritual issues related to dementia been acknowledged. The book focused on in this post is unique, as indicated by its title: Dementia-Friendly Worship. It draws from a variety of faith traditions.
If you or your loved one is at an early stage of cognitive impairment, you might want to ask your doctor about this recent news from Biogen regarding its clinical trial drug aducanumab. It had been one of the most watched and hopeful drugs being tested until the trials were suddenly shut down last spring. But just last month Biogen announced that after a fuller review of its data the trials are being reopened for FDA testing.
Archive of My Posts … I’ve written nearly 100 posts in the last four years. They are drawn from our family’s experiences throughout our 17-year odyssey and from many others’ inspiring stories as they’ve learned to navigate the rough waters of one form of dementia or another. You can scan these posts to see if there are others you’d like to check out.
Whatever the form and stage, cognitive impairment can be a volatile and distressing path for all concerned. BUT … you don’t have to be fatalistic and consumed with fear or depression. Obviously no two paths are the same, but we can learn from each other’s stories, from our frustrations as well as from our breakthrough moments.
As I reflect back on our family’s experiences I wish we could have had access to such resources in 1997. A core library like this would have saved me a lot of frustration, headaches, and dead ends.
I hope you can find some value here as you move forward seeking to live as fully and completely as possible under what often can be trying circumstances.
Thanks,
Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com
PS1 As usual, feel free to forward this post to your friends and family.
PS2 Heads up! My publisher, Paraclete Press, is honoring Alzheimer’s Disease Awareness Month this November with a special offer on my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. The Kindle version will be available at $1.99 for one week only, November 8th-15th. Check it out now on Amazon.
PS3 You can also help commemorate this month’s designation by buying a sheet of the Alzheimer’s first-class stamps at 65 cents a stamp. Did you know that in 1983 President Ronald Reagan enacted Alzheimer’s Disease Awareness Month? (You’ll remember he lived with Alzheimer’s in his last years.) I went to four local post office stations and found them all out of the stamps. So I went online to order a fresh batch. (Or I could’ve called toll-free at 1-800 STAMP-24.) Yes, the net proceeds go to the National Institutes of Health for Alzheimer’s research; as of September, 7.5-million stamps have been sold, raising $991,000.
