Why I Went Public with Our Family's Alzheimer's Story

My story is not your story, and your story is not mine. But by sharing our stories we can learn from each other, and help each other.

My book A Path Revealed came out October 2016. Since then, I’ve shared our family’s story in a variety of ways, such as through media interviews and this blog. I’ve also spoken with Alzheimer’s groups, book clubs, libraries, church groups, and civic clubs. I’ve traveled to Atlanta, Knoxville, Raleigh, Alabama, Nashville, South Carolina, Cookeville (my hometown), Asheville, and of course here in Tampa Bay. I’ve talked with audiences secular and religious, including Catholics, Presbyterians, Episcopalians, Methodists, and independents.   

After talking and listening to so many people, several issues have come into sharper focus for me.

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For instance, when caring for my wife Martha I paid little attention to the magnitude of Alzheimer’s impact. Its shock on our family consumed all my energy and focus. So I was startled to learn that Alzheimer’s is growing in epidemic proportions nationwide, with burnout rampant among those caring for their loved ones. Today, about 22-million people in the U.S. are directly affected, including those disabled and their family caregivers. The Alzheimer’s Association expects that number to grow to 28-million within seven years unless there’s some intervention. (Just in the last two months, I’ve learned of four friends who’ve been diagnosed with Alzheimer’s or some other potentially debilitating form of dementia.)

As if those statistics aren’t harsh enough, I have a gut feel that the fear of this insidious disease is growing even faster.

                                                                  Source: Alzheimer’s Association

                                                                Source: Alzheimer’s Association

All my life I’d thought that illnesses and diseases were physical issues to be dealt with as such. (I suspect I’m not alone in this thinking.) But I found out soon enough that with Alzheimer’s—as with most serious crises—there are embedded emotional, psychological, and spiritual issues that I had to recognize and resolve as best I could if my family and I wanted any sense of wholeness.

Issues like fear, guilt, stigma, confusion, bitterness, anger, depression, and alienation. Martha and I experienced these and more as we struggled with the disease’s precipitous symptoms. One particular image was especially vivid and frequent: Seeing my life and our family’s fractured into a thousand pieces on the floor. I’d been thrust into a caregiver’s role that I was unprepared for and, frankly, I didn’t want.   

One more thing has come clear: A crisis like Alzheimer’s is agnostic. It doesn’t care what you believe, or don’t believe. It doesn’t care whether you worship at church, synagogue, the mosque, or the beach. Or whether you worship at all.

I’m convinced, though, that if our family had not found some way beyond our own resources, some power, this crisis would have crushed us. Consequently, Alzheimer’s is not the focus of our story; it’s the context. The focus of our story is the spiritual odyssey that unfolded over the course of 17 years. Martha was diagnosed in 1997 at the young age of 50. I was 52, and our children were still in high school and college. She died four years ago this June.

                                                                                China.org.cn

                                                                             China.org.cn

In telling our story, I emphasize the word “odyssey” rather than the more conventional term “journey,” which seems too tamed and planned for a crisis like Alzheimer’s. Our experience was an odyssey in the classical sense: You wake up in a foreign land. You’re lost, you’re confused, and you’re hurt. You want to get back home. You’ll do anything to get home. You’ll go anywhere. And when you do get home—IF you do—you find that home is not the same place as when you left. And you’re not the same person.

I write and share our story through the words and concepts of the faith tradition I’m familiar with—Christianity. But sharing our experiences in these terms has nothing to do with trying to be theologically correct … and everything to do with trying to survive.

Words matter. But the truth behind the words matters more. I’m certain that the spiritual insights gained by our family can be found through any authentic faith tradition whose source of goodness transcends the human ego. Insights like needing to forgive yourself and your loved one; being released from the shame, guilt, and stigma still so prevalent with mental disabilities; having the humility to permit God’s love to permeate and transform the fear and depression that runs so deep.

Reflecting on our 17-year odyssey I was forced to learn things I’d never realized before, such as: There’s a vast difference between believing in God and in believing God.

A mere belief in God doesn’t cut it when you see your wife collapsed on the floor in a full seizure. I needed something more, something that arises from the deep recesses of our hearts and minds, yours and mine. I needed to experience the warm, healing movement of God’s Spirit. So did Martha and our children.    

If you’ve read my book, you may remember that Martha and I visited a warm, gifted nun in Kentucky three weeks after Martha’s diagnosis. During our week’s visit, we set out on a path, but one that I didn’t recognize until long afterwards. Sister Elaine’s parting words to us were: “Your main calling at this time is to trust that you belong to God and not to yourselves. And to deepen your love for God and between yourselves.”

I remember thinking, so naïvely: “That should be easy enough to do.”  

Regardless, I now suspect Sr. Elaine’s strong, comforting words can hold true for anyone, religious or not, who’s undergoing their own serious crisis, by embracing her words, turning them over and over in your hearts and minds, letting them set a direction.

One other person’s advice also lifted me through many a frustration:  “Remember, Carlen, be gentle on yourself. Be gentle.”

By going down this spiritual path, am I saying we ignored Martha’s doctor and the physical aspects of this disease? No. Martha and I stayed close to her neurologist throughout and followed his direction. He was knowledgeable, he communicated clearly, and he was empathetic to our plight. With our agreement, Martha was enrolled in an experimental drug program being conducted nationally, which ultimately was declared ineffective. Martha also was prescribed a med that hopefully would delay the degenerative impact of the disease; it may have helped for a while.

As a whole, the medical and research community could offer little to no hope for Alzheimer’s in 1997, and little to none now. In short, since the causes of Alzheimer’s have yet to be determined no solution appears near.     

I thus began to explore any links between the physical symptoms of this disease and the embedded emotional, psychological, and spiritual issues that I’ve referred to. Stress as a possible culprit quickly surfaced. That may seem obvious today, but it wasn’t to me 20 years ago. The chaos that stress could create on the physical body came sharply into focus. That and the fact that such stress often is precipitated by longstanding fear and resentment.

I now understand much better the corrosive, destructive, chaotic nature of fear. There’s truth in Job’s words: “For the thing that I fear comes upon me, and what I dread befalls me.” (Job 3:25 RSV).

Several books by medical doctors proved helpful to me early in our crisis. Some were controversial when they came out, but many of their ideas are more mainstream today:

  • Dr. Herbert Benson’s Beyond the Relaxation Response. A cardiologist who was a pioneer in mind-body research.
  • Dr. Hans Selye’s The Stress of Life. An endocrinologist and pioneer researcher into the impact of stress on the body’s immune system.
  • Dr. Carl Simonton’s Getting Well Again: A Step-by-Step, Self-Help Guide to Overcoming Cancer for Patients and Their Families. An oncologist researching the impact of emotional and psychological issues on cancer.
  • And Norman Cousins’s Head First: The Biology of Hope. This longtime editor of Saturday Review magazine was the only layman at the time invited to be on the UCLA School of Medicine faculty.

I also went searching far and wide through a variety of spiritual traditions. Occasionally I’ve been asked, “Why?” My answer: “When you’re desperate you’ll go almost anywhere and try almost anything that does no harm.” And I was desperate.

We don’t have the time or space to get into all those endeavors, many of which I do share in my book. But one spiritual practice was especially potent early on for Martha and me: Being still long enough to meditate silently. Sister Elaine had suggested we check into meditation.  

At the time, Martha and I led hectic lives, between raising three children, Martha’s political and civic involvements, and my launching and publishing a regional magazine. 

Alzheimer’s forced us to slow down; it also raised our anxiety level a hundredfold.

After awhile, the practice of silent meditation helped cause our level of fear and anxiety to subside. Martha and I would sit side-by-side, holding hands. I quietly said the word we had chosen to repeat. We did this for 15-20 minutes in the morning and again in the evening as best we could, repeating our word over and over. There’s nothing magical about it. The mentor we followed, a Benedictine monk named Father John Main, describes meditation as being “extraordinary in its ordinariness.” His goal was to move the practice of meditation outside the monastic walls into the busy lives of those of us trying to make a living, raise a family, and enjoy our friends.

      Fr. John Main (1926-1982)

    Fr. John Main (1926-1982)

The diminishment of our anxiety over time was real and it was vital. Surprisingly, a level of intimacy also arose between Martha and me that we’d not experienced in our 25 years of marriage. I often felt we were wrapped in a warm blanket of calm and joy. I sensed Martha did too; her grin and re-emerging confidence told me so.  

These are some of the reasons why I’ve chosen to go public with our family’s story. Feel free to draw from our story as you wish, or not.  

Let me close with this: Regardless of your faith, whether you are religious or non-religious, whether you are spiritual or secular, do everything possible to prevent Alzheimer’s, or any other crisis, from consuming you and your family. Too often it does. Instead, seek that reality that can help you transcend your crisis, and rest in it.

Even though our immediate crisis has passed, I still seek to rest in our God and in our ever-deepening friendship. Sometimes I find rest, sometimes I don’t. Regardless, there’s value in the search itself, there’s strength and wholeness.

Thanks,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 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.

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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’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research. The net proceeds go to the National Institutes of Health. To see how using these stamps one-by-one can add up, the cancer fundraising stamp has to date raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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