Why Did I Start Searching, and What Was I Looking For?

I write in my book: “Every crisis—be it health, financial, family, or relationship—carries a significant spiritual dimension. Learn to recognize it. It could save your life.”

A crisis like Alzheimer’s has the capacity to destroy families. I began to realize this early on while reading a book by Frena Gray-Davidson, a professional caregiver: “The process of Alzheimer’s disease is connected with losses, difficulties, and agonies. The central difficulty, however, and one that has been largely ignored by Alzheimer’s professionals, is the crisis of dysfunctional caregiving.” (My emphasis).

She continues in Alzheimer’s Disease Frequently Asked Questions: Making Sense of the Journey: “The dysfunctional aspect of caregiving has been allowed to become the so-called norm of Alzheimer’s care…(this) disease touches us at the very root of our deepest, darkest terrors…Alzheimer’s disease brings us face to face with the central crisis in our society: the crisis in which the parent does not meet the love needs of the child. We live in a society of the emotionally orphaned.”

But Ms. Gray-Davidson is a woman of practical hope, not gloom. Otherwise, why write a book for caregivers?

“Even if you have been one of those millions of orphans who never experienced enough love, you can still learn to be a good caregiver and, in doing so, you will become healed. This is the most powerful message that Alzheimer’s disease carries in the heart of its own darkness: the disease itself can become a source of light and love.” (My emphasis again).

Yet she cautions: “Remember, however, the warning of Trappist monk Thomas Merton: ‘He who attempts to act and do things for others…without deepening his own self understanding, freedom, integrity, and capacity to love, will not have anything to give others.’” 

  Martha at 50, soon after her diagnosis

When I first read her book, I began to realize, dimly, how intertwined issues of the body and mind are with those of the spirit. Two decades later, I realize that her insights helped set the cornerstone for my search for survival, healing, and meaning. Shortly after turning 50 in 1997, my wife Martha was diagnosed with early onset Alzheimer’s.  

In trying to cope with our family’s new, bizarre landscape, I soon realized that I was in as much need of healing in my own way as Martha was in hers. Long forgotten resentments were embedded within us both. Martha could quickly direct her anger at whoever was in her line of fire. I, on the other hand, felt my approach was more righteous by keeping mine stuffed inside. While growing up in comfortable, middle class families, Martha and I were each in our own way, to one degree or another, “emotionally orphaned” children.

Our family has had to deal with Alzheimer’s, but I’ve seen enough other families trying to cope with other kinds of crises to recognize this culture's emotional starvation.    

Corrosive spiritual issues lie hidden in the heart of many such crises. These can go by many names, such as neurosis, denial, obsession, fear, manipulation, anxiety, guilt, shame, bitterness, depression. Regardless of what I call such issues, I learned over the 17 years of our journey that I had to face them or risk the potential dissolution of our family.

My faith tradition is Christian, and with uncertain steps I was drawn more deeply into this tradition than I imagined possible, hoping to discover some meaning, some way out, some ground of stability.

You may come from a different faith, or you may say, “I’m an atheist; I don’t have a faith.”

But to quote a mentor: “We all have faith. Either we have faith in our problems, or we have faith in God and his solutions.” Or if you prefer…Do I choose to focus on my problems or do I focus on a power far greater than myself and the resources it offers?

I’m talking about trying to survive, not score theological points.

Many of you have read my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. If you have, you should realize by now that my trying to focus on God and his solutions rather than on our problems was most difficult for me. In fact, when I told my mentor this was the hardest thing I ever tried to do, I broke out laughing when he retorted, “I didn’t say it was easy, Carlen. I said it works.”

Regardless of your belief or mine, I suspect each of us is faced with a similar difficult decision: Do I want my family to be consumed by this crisis? Or do I want us to be drawn to some higher ground, a ground of wholeness?

That in a nutshell describes the arc of our family’s story that I try to tell in my book. An arc that bends ever so fitfully from a powerful undertow of pain, fear, and alienation to a palpable sense of our Creator’s embrace, an embrace of Martha, our children, and me with a love deep, intimate, and true.  

Welcome, new readers
The number of this blog’s readers expanded dramatically recently. After one of my posts went live nationally on the Alzheimer’s Association’s website, 200-plus new readers have signed on. Thanks for signing up! By now you should have received an email pointing you to the archives of my blog, which I introduced in September 2015. Feel free to refer to these to catch up on topics that interest you.

Are you feeling lucky?
On occasion I give away a book that was important along our family’s journey. I’ve already given away Ms. Gray-Davidson’s book above, but I’ve decided to offer it again. It was that significant to me early on. It’s practical and it’s hopeful. Even though it was published in 1999, most of it should hold true today except for references to the latest research, which can be found on the Internet.

Anyone is eligible to enter this giveaway, whether you subscribe to my blog or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, November 10, and next Tuesday, November 15. Indicate that you would like to be included in this book giveaway. It will help if you put in the subject line: BOOK GIVEAWAY. One person—maybe you!—will be selected at random from those entering. I will send you a confirmation email on Wednesday, November 16. You will have 48 hours to respond. If I don’t hear back from you by then, someone else will be selected at random. For more details, click Book Giveaway.

Thanksgiving and Christmas are around the corner
If you think our story is worth sharing, perhaps you would like to give my book, A Path Revealed, to family and friends who might also find value in it. Or maybe your book club would like to read and discuss it. You can purchase the book several ways:

1) At your local bookstore or at a Barnes & Noble, which may not have it on the shelf but can be ordered. 2) On Amazon. 3) Via my publisher Paraclete Press, which also offers discounts for multiple copies. To do that, contact Sr. Estelle Cole by phone: 774-801-2030 or by email: srestelle@paracletepress.com.

Thank you,

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. 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.

What Are People Saying About My Book?

“I don’t know what I expected, but I know I did not expect to stay up all night reading it,” says one person about my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s.

Says another: “I am purchasing copies for several beloved family members because it is written so well that any family tragedy experienced will be aided by what Carlen has so graciously shared.”

And another: “A must read for families struggling with Alzheimer’s.”

“Even though the book is spiritual…one does not need to be of the same mindset or religion to appreciate the strong sense of faith that was so important to the family’s journey,” says a fourth reader.

My book was released three weeks ago on Amazon. Since then, my time and emotions have been overwhelmed by the response our family has received. In this short period, the book’s launch has prompted hundreds of responses (at least 1,600 that I’m able to identify) from friends and strangers alike—in person, by email, by phone, and on Facebook and other social media.

                Look, Mom, it's real!

At this writing, 44 persons have posted reviews on Amazon. The variety and depth of responses to our story is what I’d hoped for, but was unsure whether it could be achieved. As I’ve mentioned, Alzheimer’s is not the focus of our story—it’s the context. The focus of our story is the spiritual path that arose from a dark, impenetrable crisis.

In describing this spiritual journey, I write this in my book’s Prologue: “In telling our story, I must speak in Christian terms and images because that’s the faith and tradition I grew up with…In doing this I’m not denying another’s spiritual heritage. Our story is not about scoring theological points. It’s about trying to survive…”    

That’s enough commentary from me. The rest of this post is from readers of A Path Revealed, their comments edited for clarity and brevity:  

Reader 1: “Carlen Maddux has written a book about his family's struggle with Alzheimer’s. His wife, Martha, was diagnosed at 50 with early onset. During the 17 years they struggled, Maddux and his family found hope and peace in a path that took them from conventional religion into meditation and an inspiring journey through monasteries and communion with God that saved his family and helped them deal with the loss of a vital mother and wife who was suddenly enveloped in the horrors of a disease that has defeated many other families. It is a must read for any family in the midst of this dreadful disease.”

Reader 2: “The author is speaking to anyone who has had an unexpected medical diagnosis. You feel that Carlen is speaking to your heart through his own experiences. Four years ago, I was diagnosed with Parkinson's and a year later my husband had a stroke. We have had a similar journey that included many of the emotions, frustrations, pains, and realizations. I started reading the book early afternoon and finished it after midnight after laughing, crying, and nodding my head in agreement.”

Reader 3: “Reading A Path Revealed was uncomfortable for me. I don't share the author's religious faith, or his ability to keep striving in the face of despair. Yet I was unable to stop reading. I am not in Maddux's situation, and I fervently hope never to find out what I would do. However, I feel that this book gave me some insights and mental tools that will serve me well if ever needed. It was a joy to read a book so well written and well edited, a treat all too rare today. The language is casual, but every word earns its keep. The dialog would be at home in the best of scripts. It's real and relatable.”

Reader 4: “A Path Revealed is both intimately personal and transcendently universal. Having faced personal and family crises, but not Alzheimer's, I found Carlen's frank descriptions of pain, fear, and grief to be authentic. He put words to feelings I'd had but could only express in a limited way. Likewise, the joys and setbacks of his spiritual journey were so well described that I felt we were sharing together in a local coffeehouse.”

Reader 5: “Carlen directs us to spiritual resources in a way that is real and raw. He writes as if he is sitting down to have a conversation with you, expecting you to question the sometimes strange paths he took along the way and then reminding you that we are all searching for answers that are not easily found, that we want hope and connection and healing, and sometimes that comes in mysterious ways.”

Reader 6: “I don't often find a book that pulls me to the next chapter, but this one does. Carlen's honestly told search for answers concerning his wife's early onset of Alzheimer’s led me to re-examine questions about the meaning of faith for myself. He wastes not a word is this tightly told recounting of a battle with death that led him (and I suspect most who read this book) to a whole new view and experience of life and God.”

Reader 7: “While highly personal, the author's experiences are important for anyone in a search for life's meaning. During this exploration the author uncovered deep-seated resentments and personal animosity which required facing head on. A favorite passage in the book for me was: ‘It took a long while before I understood this fundamental fact: God has given each of us the spiritual resources and framework to face a crisis that seeks to crush us. We are created with the capacity to discover these resources. And as we do, we must be willing to embrace them.’”

Reader 8: “All I can say is thank you for sharing all this; you have given me a LOT to think about. This is a rare and inspiring, and very approachable, book. The depth of your revelations is really impressive.”

Reader 9: “This is not an easy book to read, as one would expect considering the subject matter. In fact it's wrenchingly honest about dealing with the hard decisions and horror of alzheimer's. Carlen does a first rate job of describing this in vivid and personal detail. It also allowed him to find a path through all of this which is both heartening for him and will be helpful to all who are in the process of dealing with this tragic disease. This is one of the best resources you can find if alzheimer's or its kin intrude on your life.”

Reader 10: “A Path Revealed is a beautifully written journey of a family’s coming to grips with uncertainty, illness, and despair with hope, promise, faith, and love. The intensity of the family’s support and love for Martha is really at the heart of this page turner. Expect to laugh, cry, and feel tremendous warmth and love. And as an added bonus, the well crafted inclusion of the children’s perspective and handling of their mother’s Alzheimer’s affliction is truly an inspiration and a wonderful balance in understanding all that the family endured, conquered, and survived throughout Martha’s illness.”

~~~~~~~~~~~~~~~~~~

To each of you who read my blog and my book, I thank you. I thank you for your ongoing participation in our family’s story. And I thank you for your willingness to share it with others.

Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. If you want to buy A Path Revealed, click on my publisher’s page at Paraclete Press, or my profile page on Amazon. And if you’re up to writing a review on Amazon—which will help broaden the reach of my book—go to that same page. Thank you.

P.P.S. Feel free to forward this post to your circle of friends and peers. If you’d like to sign up for my blog, it’s free. Just click here.

'A Path Revealed' Is Now Released

My book is launched. Finally!

Four years ago this November, these were the first words I wrote in the first draft of my book…

The date is seared in my mind—September 23rd, 1997.

That’s the date our family took a sharp turn, unexpectedly, into a world pocked with the grotesque. That day, my wife and I were scheduled for a follow-up visit to the doctor, who a few weeks earlier had run some tests on Martha. In July, Martha had gone alone for those tests, but had walked out of the doctor’s office before meeting him.

“I got tired of waiting,” Martha said. That was it, no other explanation, topic closed.

The children and I had been urging her to get tested, for something seemed wrong. What, we didn’t know. We just knew that she was forgetting names and appointments more than occasionally.

The past 18 months had been tough on Martha….

Thousands of words later, and after untold edits and rewrites and a hundred changes to the title,    A Path Revealed is published, and its page one of Chapter One looks and reads like this:

Ironically, the first copies of A Path Revealed were shipped out nineteen years to the day after our family’s journey began, on September 23rd.

~~~~~~~~~~~~~~~~~~~~~~~~

If you’re interested in following our story and haven’t ordered A Path Revealed, you can go to Amazon and buy it at the discounted price of $10.85. You’re probably tired of seeing the cover by now, but for those who haven’t seen it…

One more thought: I’ve already heard of at least six book clubs that are either considering A Path Revealed or have decided to read and discuss it. If your club, discussion group, or church circle is interested in my book, you can save money if one person orders all your group’s copies from Amazon. Shipping is free for book purchases of $25 or more. So each book would cost only $10.85+tax. Otherwise, you would pay an additional $5 per book in shipping & handling.

Thank you,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. Feel free to forward this post to your circle of friends and peers. If you’d like to sign up for my blog, it’s free. Just click here.

You Can Win a Free Copy of My Book

I’ve just learned from my publisher that it’s offering 10 free copies of A Path Revealed via a Goodreads Giveaway. Paraclete Press’s offer is good through this Saturday, September 17th.

If you’re unfamiliar with Goodreads, it’s a free website for booklovers.

IF YOU ARE A GOODREADS MEMBER, click here now to enter the Giveaway. (I give you a step-by-step below if you have difficulty.)

IF YOU ARE NOT A MEMBER and want to enter the Giveaway, becoming a member is simple — you just sign up here by entering your name, email, and a password .

Then to enter the Giveaway, click here now.

After clicking to the Giveaway page, do the following:
1)    Click “Enter Giveaway” box to the right of the title.
2)    Fill in your name and shipping address to receive the book.
3)    Click “Add Address” at bottom left of the page.
4)    Click the “Select This Address” button above your name and address.
5)    Check the box “I have read and agree to the giveaway entry terms and conditions.”
6)    Check the box “I am not a robot.”
7)    You’re now in the drawing! Congratulations.

Goodreads’ terms say: “Winners will be notified by Goodreads typically within five (5) business days of the drawing. A Prize(s) will be fulfilled by Sponsor (Paraclete Press), and if you are a winner, it will use the shipping address you select for the promotion to fulfill your prize. (A Path Revealed) is typically shipped within two to three weeks of the drawing.”

A Path Revealed is not yet released, but we’re getting closer by the day. Good luck on the Giveaway.

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. Feel free to contact me if you have any questions on this Giveaway.

Somewhere Over the Rainbow

Comic and actor Gene Wilder died on Monday, August 29th. Only after his death, per Wilder’s wish, was it revealed that for the past three years he’d suffered from Alzheimer’s disease.

Going viral, a statement by Wilder’s nephew reads: “…He was eighty-three and passed holding our hands with the same tenderness and love he exhibited as long as I can remember. As our hands clutched and he performed one last breath the music speaker, which was set to random, began to blare out one of his favorites: Ella Fitzgerald….She was singing Somewhere Over The Rainbow, as he was taken away.”

With a gasp, I cried remembering this delightful painting of Martha’s…

                            Somewhere Over the Rainbow

Of the 50-something posts I’ve written since last September, my most popular is the second one, Finding Unexpected Gifts Deep in a Crisis. Many readers were surprised, as was I, that a talent such as art could emerge so serendipitously out of Alzheimer’s. But in 1999, at age 51 and a year and a half after my wife was diagnosed with this disease, Martha's did.

In honor of both Martha and Gene Wilder (“Willie Wonka and the Chocolate Factory,” “Blazing Saddles,” “Young Frankenstein”), I’m sharing some of her paintings again. Since writing that second post, more than 200 readers have signed on to my blog and may not have seen these the first time around.

Our sister-in-law KK encouraged Martha to join her in an art class—four hours a week for about six months. I was surprised when Martha said ‘Yes’ because she’d always enjoyed more active things like tennis, dancing, hiking, and politics. But she didn’t just agree; she jumped in feet first.

                        Piano Man

Martha’s teacher, Judi Dazzio, would hand her a sketch to paint, and Martha began to do so with a complexity and boldness of color that reflected a dimension I’d never seen in her. I still have no idea where that came from. Neither does Judi, who pulled me aside one day. “Carlen, this can’t be taught,” she said of Martha’s use of color.

                    Martha the artist

What a delight to see this talent unfold out of a dark and scary place, and to see the surge in Martha’s confidence after so many months of despondency. Her face would glow as she talked about her works. I describe the affect of her painting—not only on Martha but also on our children and me—in my forthcoming book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s.

              Martha, A Self Portrait                     (Described in Chapter 4-'The Closet')                             

                              Feeding the Ducks                     (Described in my Postscript-'A Mom and Her Children')

The ‘Feeding the Ducks’ painting affected our daughter Kathryn deeply. So much, in fact, that she wrote a poem about it for a workshop her senior year in college. The painting somehow helped change her perspective on Martha’s condition, and on how Kathryn subsequently related to her mother. I shared this in an early post: The Power of Art and Poetry in a Crisis.

      Swimming in the Deep Green Sea

The Latest on My Book
My publisher Paraclete Press tells me my book should be released around the first of October. It’s now at the printer. It will happen, however, when it happens, so stay tuned.   

Meanwhile, this will be my last post until I announce my book’s release. I’ve got a lot of loose ends to tie up between now and then. “So much to do, and so little time to do it.” If you’ve joined us recently, you might want to check out my Archive of Posts by clicking here. We’ve covered a lot of ground over the past 12 months.

As an aside, Paraclete tells me that of all the books they have on Amazon, A Path Revealed is its fourth best seller right now. In case you haven’t heard, it’s available to pre-order on Amazon. 

Thank you,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

Our Community's Surge in Interest, Strength, and Influence

I feel lucky to have this ringside seat as I watch our community of readers grow in interest, strength, and influence.

As you know, I announced two weeks ago that you now can pre-order my book on Amazon. Apparently, many have.

Amazon recently said that my book ranked No. 3 under its “Hot New Releases” category for ‘Alzheimer’s’. It was also No. 3 under ‘Dementia’; No. 7 under ‘Neurology’; and No. 10 under ‘Christian family.’ These rankings, of course, are fluid and can vary widely from day to day based on sales activity. Nonetheless, they were a big surprise when I first saw them.

                                                          You’re seeing it here first: The full cover!

Because of your interest and support—thank you!—my posts are reaching far beyond those who’ve signed up to receive them. The post two weeks ago is a great example: The total number of people opening that email is nearly five times the number of subscribers who did. That’s an incredible pass-along rate. In fact, one friend’s email was opened over 170 times, and a handful of other friends’ emails over 40 times.

What do I make of this pre-order activity? Last fall, I wrote this about my book:

“I decided to write this book … Correction: I felt compelled to write this book because I sensed that my wife Martha, our children, and I had gone through enough unique experiences that our story might be worth telling to others who are enduring their own crises. Not that they would copy what we did, but our story might spark ideas and initiatives as they wrestled with their issues. They might hear echoes in our story that would help reinforce their decisions one way or another.”          

That must be happening to some extent, based on comments from many of you. 

One of my Launch Team friends says: “Thank you for the opportunity to read your manuscript. I found myself being immersed in your words…your journey and your telling of it are very moving and valuable.”

And this comes from another manuscript reader: “I don't often find a book that pulls me to the next chapter, but this one does…(Carlen) wastes not a word in this tightly told recounting of the battle … that led him (and I suspect most who read this book) to a whole new view and experience of life and God.”

                        One of Martha's paintings                                       described in my book's 'Postscript' chapter

A Quick Update on My Book
My publisher Paraclete Press and I have spent the last few weeks making last-minute revisions to the manuscript. We wrapped it up this week. I think Paraclete has done a remarkable job. The book’s editing and design and Paraclete's attention to detail and interaction with me are superb. The full cover (front, back, and spine) is shown above. There’s not a firm “publish date” yet, but I’ll let you know as soon as I hear, so stay tuned.

If you or your friends have not pre-ordered my book, but would like to, you can still get it at Amazon’s discounted price of $10.85 by clicking here.

This Amazon page doesn’t yet have “teaser” excerpts from my book, but if you email me at carlen@carlenmaddux.com I’ll be glad to send you a free pre-typeset digital version of the Contents, Foreword, Prologue, and Chapter 2. Please put in the subject line: Amazon offer.

Thank you,
Carlen
www.carlenmaddux.com

P.S. Feel free to forward this post to your circle of friends and peers. If you’d like to sign up for my blog, it’s free. Just click here.

Surprise! Now You Can Pre-order My Book on Amazon

“I have been reading your manuscript ever since it arrived—hate to put it down! I feel so inside the story that it's like you wrote it just for me.”

“I just can't stop thinking about your book. I'm grateful for such a gift of insight, knowledge, reflection, and divine (mystery). I went into this thinking I was going to read a "self-help" book. But what I read was a love story. A love story with a reminder that our journey is not always as we would like or choose.”

“Anyone who knows me knows that I’m not religious in any sense of the word, or even spiritual. But, your (book’s) words are stirring emotion and a sense of understanding.”

“I have finished reading the book...really so profound for me and so much to re-read, digest, and ponder.” 

These are a few quick responses I’ve heard from my Launch Team friends—the 85 volunteers who are reading my manuscript in advance. They’ve agreed to help spread the word on my upcoming book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s.

My book should be published in October. BUT you can pre-order it now on Amazon. My book’s retail price is set at $15.99. But Amazon, as it often does, has discounted it to $10.85. If you pre-order now, Amazon says it will guarantee that price when the book becomes available. Yet anyone familiar with Amazon knows this guaranteed offer could change next week.

So to get it for $10.85 now, please pre-order it here by clicking A Path Revealed on Amazon. When there, you’ll see I’ve added information about the book and about me as the author. If interested, reviews from early readers of my manuscript can be found by scrolling down the Amazon page below “About the Author” and click on “See all Editorial Reviews.”

Paraclete tells me 500 copies have already been pre-ordered. I know, I know…those aren’t big publishing numbers, but that’s 500 more copies than I imagined at this early stage.

“Teaser” excerpts have yet to be uploaded on this Amazon page, but if you email me I’ll send you a free pre-typeset digital version of: 1) Table of Contents; 2) Foreword; 3) Prologue; and 4) Chapter 2.

My email: carlen@carlenmaddux.com. Please put in the Subject line: Amazon offer.

This is from another member of my Launch Team: “I came home last night and your transcript was in the mail. I read it immediately from start to finish! Parts of it could be right out of my life. It touches the life of anyone that goes through a medical diagnosis."

And one more: “It is truly a book of compassion and learning.”

Thank you to all who have been following our story on this blog and who are sharing it with your circle of friends and family and favorite bookstores and libraries. I’ve been fortunate enough at times to put words to some deep feelings along our path, but I’m at a loss right now as I see our community—yours and mine—circling wider and deeper.

No longer is this Martha’s story and mine alone.    

 As you check out Amazon’s pre-order offer for yourself, feel free to pass this post along to your friends who also might be interested in our story.

Now…click here to see Amazon’s guaranteed pre-order offer for $10.85.

Thank you,
Carlen
www.carlenmaddux.com

P.S. If you’d like to sign up for my free blog and keep up with the progress of my book, you may by clicking here.

Why Have These People Not Given Up?

A crisis like Alzheimer’s can unnerve you. Knowing that firsthand, I’ve often asked myself, “Why are some victims and caregivers able to do what they do?”  

There’s Pat Summitt, who died recently. Coach of the University of Tennessee women’s basketball program, she won more games than any other college basketball coach, women’s or men’s. After being diagnosed with early onset, she was reported saying, “There's not going to be any pity party.” She coached one more year and then pushed through plans to establish a foundation to combat Alzheimer’s. With all that was raining down on her, how did she do this? Why?

       Pat Summitt clips another victory

I think, too, of the friend who for years cared for her mother with Alzheimer’s while continuing to work. “I’d do it again,” she told me. Why?

Greg O’Brien also comes to mind; he’s a friend of a friend. After being diagnosed with early onset, Greg wrote a riveting book about his experience: On Pluto: Inside the Mind of Alzheimer’s. The book won the 2015 Beverly Hills International Book Award for Medicine and is an Eric Hoffer International Book Award finalist.

NPR’s All Things Considered airs a series with Greg about his journey. He serves on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, and is an advocate for the Cure Alzheimer’s Fund of Boston and the Washington, DC-based UsAgainstAlzheimer’s. Greg directs his energy this way rather than isolating himself at home. How does he do this? Why does he do it?  

Another friend, whose husband was diagnosed with Alzheimer’s a couple of years ago, has stepped onto a steep curve of learning how to care for him while taking care of herself. Why?

I think of Dr. David Compton. At too early of an age, he was diagnosed with this disease. The little I’ve gotten to know him as an adult (our lives intersected in our more tender years), I call him the “Listening Doctor.” That’s how I’ve heard him described by his patients and friends. Yet after giving so much of himself as a doctor, he’s giving even more now, willing to share his experience with others. Why?

     Dr. David Compton

Sundar Singh, whom I wrote about two weeks ago, was also asked Why? With all the demands on him, why did he expend so much effort in helping others? He responded with this story:

“Once when traveling in Tibet, I was crossing a high mountain pass with my Tibetan guide. The weather had suddenly turned bitterly cold, and my companion and I feared that we might not make it to the next village—still several miles away—before succumbing to the frost.

“Suddenly, we stumbled upon a man who had slipped from the path and lying in the snow. Looking more closely, I discovered that the man was still alive, though barely. ‘Come,’ I said to my companion, ‘help me try to bring this unfortunate man to safety.’ But my companion was upset and frightened for his life. He answered: ‘If we try to carry that man, none of us will ever reach the village. We will all freeze. Our only hope is to go on as quickly as possible, and that is what I intend to do. You will come with me if you value your life.’ Without another word and without looking back, he set off down the path.

                      A blizzard brewing in the Himalayas

“I could not bring myself to abandon the helpless traveler while life remained in him, so I lifted him on my back and threw my blanket around us both as best I could. Slowly and painstakingly, I picked my way along the steep, slippery path with my heavy load. Soon it began to snow, and I could make out the way forward only with great difficulty.

“How we made it, I do not know. But just as daylight was beginning to fade, the snow cleared and I could see houses a few hundred yards ahead. Near me, on the ground, I saw the frozen body of my guide. Nearly within shouting distance of the village, he had succumbed to the cold and died, while the unfortunate traveler and I made it to safety. The exertion of carrying him and the contact of our bodies had created enough heat to save us both. This is the way of service. No one can live without the help of others, and in helping others, we receive help ourselves.”

This comes from Wisdom of the Sadhu: Teachings of Sundar Singh, page 135. (Plough Publishing House of The Bruderhof Foundation, Farmington, PA.)

Some have asked me why I stayed on our Alzheimer’s-riddled path for 17 years caring for my wife Martha. Even today I’m not totally certain. But I vividly remember the time, when I was desperately scrambling for answers and a shred of stability, that it dawned on me: “I’m in as much need of healing in my own way as Martha is in hers.”

Each of us has differing motives, but for me Sundar Singh’s story cuts to the quick the question facing us all at one time or another: Why not give up?

An Endorsement of My Upcoming Book

When appropriate, I’m sharing endorsements of my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, which should publish this October. This one is by Deborah van Deusen Hunsinger, Ph.D. and professor of Pastoral Theology at Princeton Theological Seminary. Dr. Hunsinger’s most recent book, Bearing the Unbearable: Trauma, Gospel and Pastoral Care, was awarded the 2015 Book of the Year by the Academy of Parish Clergy. This is what she says:   

“A moving account of one man’s journey from a conventional faith to a stunningly real relationship with God, this spiritual memoir will linger in your imagination long after you have finished reading it. It describes the author’s path through the desert of his beloved wife’s slow descent into Alzheimer’s disease for more than sixteen years. ‘A Path Revealed’ is an intimate meditation on how one man was shown how to love and trust God in the midst of devastating loss.”

Thank you,
Carlen
www.carlenmaddux.com

carlen@carlenmaddux.com

P.S. Congratulations to Ellen D., who won Wisdom of the Sadhu in our book giveaway drawing from two weeks ago.

P.P.S. If you’d like to sign up for my free blog and keep up with the progress of my book, you may by clicking here.

Discovering a Bedrock Hope When I Was Most Desperate

A St. Francis-like figure from the early 20th century fascinated me like few others along the path that I traveled with my wife Martha. He still does.

Thomas Merton was the first writer to make me aware that an infinite, transcendent, and distant God also could be an intimate God. However, I didn’t start feeling much intimacy until I read about the life and teachings of Sundar Singh. If you’ve followed my posts, you may remember that the hardest thing for me to do was to feel God’s love in a deep way.

“There is no better way for a person to enter true spiritual life than by encountering God directly,” Sundar Singh says in Wisdom of the Sadhu.

“We can never fully comprehend the infinite, but we do have within us a spiritual sense that allows us to recognize and enjoy God’s presence. The ocean is vast beyond our imagining … But with the tip of our tongues we can recognize at once that the ocean is salty. We have not understood even a fraction of all there is to know about the ocean, but with our sense of taste we can experience its essence.”

Sundar Singh’s simplicity of language drew me in, along with the vivid images and depth of meaning in his stories. His teachings are conversational and devoid of the abstractions that you find so often in theological and spiritual writings. His stories, in fact, approach the brilliant simplicity displayed in Jesus’s parables.

For example, he says of a spiritual life: “Our spirits live and grow in our human bodies much like the chick develops inside the egg … Even if one explained that its feathers and wings and eyes were developing so that it could fly and see, still it would not believe it … until it broke through its shell.

“There are many people who cannot comprehend the spiritual life or the existence of God because they cannot see beyond the confines of their bodily sense. Their thoughts—like delicate wings—cannot yet carry them beyond the narrow confines of logic.

“The only condition necessary for us to break out of our material limitations and attain spiritual life is that we accept the life-giving warmth of God’s Spirit, just as the chick receives its mother’s warmth. Without that warmth, we will not take on the nature of the Spirit and we may die without ever hatching out of this material body.”

You may remember that after Martha was diagnosed with Alzheimer’s in 1997 I went looking for a way out of our dreadful dilemma. I read books by the score—medical and spiritual, orthodox and alternative. I also was searching desperately for stability in our lives, for something far more secure than this disease’s insidious symptoms.

Sundar Singh’s teachings and life pointed me toward that kind of stability. What transpired in his short-lived life is the stuff of legend. A Sikh priest described the young man this way to his father: “Your son is not like the others. Either he will become a great man of God, or he will disgrace us all by going insane.”

In his mid-teens, Sundar Singh experienced something akin to the apostle Paul’s “Damascus road conversion.” That occurred just days after he led a public Bible-burning in protest of the colonial values being forced on him and his fellow students at the missionary school they attended.

This man of the East also intrigued me because he lived and died in the same century as mine. In fact, Sundar Singh and my grandfather were born in the same year, in 1889. Others I’d been reading about lived in the distant past—from the desert fathers and mothers of the 3rd and 4th centuries to St. Teresa of Avila and St. John of the Cross of the 16th century.

Sundar Singh was born into a wealthy industrialist family in northern India, of the Sikh faith. He left home at age 16, disowned by his father and siblings, his mother dead. He disappeared into the jungle. Thirty-three days later, he emerged from that jungle no longer an adolescent. He was wearing the saffron robe of a sadhu, a wandering beggar-monk. Not too unlike St. Francis of Assisi 700 years earlier.  

“We must live in this world, and we can do so without losing our true spiritual nature,” Sundar Singh wrote. “The things of the world need not harm us. Indeed, they can help us to grow spiritually. But this is only possible if we continually turn our hearts to the sun of righteousness.

“We all know that we cannot live without water. But while we need and use water, we must also watch that we do not slip beneath the surface. In the same way, we need the things of this material world, but we must exercise caution. God created earthly things for people to use. But we must not immerse ourselves in them or we will drown the breath of prayer and die.”

I don’t remember how I stumbled onto Wisdom of the Sadhu, but it showed up at the right time—when I was sinking fast after Martha’s diagnosis. My search for a solution was deep, wide, and desperate. And I began to see that the faith I’d built over a lifetime was quite conventional. I was left wondering, If my faith is no good in a crisis like this, then what good is my faith?

Wisdom of the Sadhu opens with a story in which Sundar Singh describes faith clearly and simply without even mentioning the word. “This is the best description of faith that I’ve seen,” our mentor and friend Rev. Lacy Harwell told me after reading the copy I gave him. “In fact, I shared it recently in a sermon. It’s profound in its simplicity.”  

Sorry, but I don’t have space to share the story here.

Sundar Singh died penniless at the age of 40, lost in the Himalayas on an annual trek into Tibet, his loss mourned by millions throughout India and the Far East, and in Europe and the U.S.

My Next Book Giveaway

Wrapping up, I’m offering Wisdom of the Sadhu: Teachings of Sundar Singh for my next book giveaway. For those of you recently signing on to my blog, every fourth post or so I give away a book that I’ve found meaningful over the course of our family’s journey with Alzheimer’s.

Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, July 7th, and next Tuesday, July 12th, by 11:59 PM EDT. Indicate that you would like to be included in this month’s book giveaway. It will help me if you put in the subject line: BOOK GIVEAWAY. One person—maybe you!—will be selected at random from those entering. I’ll send you a confirmation email by Thursday, July 14th. You’ll have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random. For more details, click Book Giveaway.

Thanks, Carlen
www.carlenmaddux.com

P.S. If you’d like to sign up for my free blog and keep up with the progress of my book, A Path Revealed, you may by clicking here.

Do You Want to See My Book's Cover?

The clock is ticking as the publication date for my book approaches. Here’s the latest development—the cover of my book >>>

My publisher, Paraclete Press, presented this cover to several of its major vendors—book catalogs, online distributors, and brick-and-mortar stores, such as Barnes & Noble. Word is they like the cover—it’s clear, attractive, and conveys our story, they say. That was a relief and delight to hear. I still don’t have a precise date for my book’s launch, but I’m guessing mid-to-late October. I’ll keep you posted as we get closer.

On another front, I put a call out not long ago to anyone willing to join my “Launch Team.” I asked those who responded to read an advance manuscript, and then at the right time to help me spread the word on our book and to write a review on Amazon. I set an arbitrary cap of 29 persons, thinking that they could be accommodated if we hit that number or maybe a few more.

Little did I know!

At last count, 85 persons asked to sign up. Amazing. I huddled with Paraclete and we’re able to work with them all. So let me say thanks to my Launch Team members, and thanks to the rest of you for your ongoing interest in our story.

Finally, several people have been kind enough to endorse our book. A few weeks ago, I shared an excerpt from my book’s foreword written by Rev. Arthur Ross III, our friend and former pastor. The following endorsement is from Sister Elaine Prevallet, the nun in Kentucky who pointed us to the opening of our path. Sr. Elaine is retreat director with the Sisters of Loretto, whose motherhouse is about 50 miles south of Louisville. She’s authored at least three books, including Making the Shift: Seeing Faith Through a New Lens.

Sr. Elaine writes: “Carlen Maddux and his wife Martha visited with me for a week’s retreat shortly after she was diagnosed with Alzheimer’s disease. The story Carlen tells is an amazing journey.

“Gerald May’s reflection on willingness vs. willfulness in Will and Spirit: A Contemplative Psychology provided the core, anchoring this step-by-step journey. It would require that Carlen be willing to risk, to set aside the blocks of disbelief and distrust, to open his mind and heart to possibilities he’d never have imagined. From beginning to end, willingness was at the center, a willingness grounded in trust.

“Carlen is a good, clear writer. His choice of words is precise, his images effective. Everything about this story rings true, authentic, intimate, and experiential.”

Thank you,
Carlen
www.carlenmaddux.com

P.S. If you’d like to read our story’s takeaways and keep up with the progress of my book, you can sign up for my free blog by clicking here.

A Few Simple (and Effective) Tips from My Wife's Caregiver

“I’d never done anything like this before,” says Tricia DeRussy, recounting her early days as my wife’s caregiver. She started in the summer of 2001, almost four years after Martha was diagnosed with Alzheimer’s.

Tricia’s previous experience was as a nanny. “You told me that should be sufficient.” We had a good laugh over that. “But it turned out great,” she says. Actually, knowing how to work with children was pretty good training for working and playing with Martha, or anyone struggling with Alzheimer’s.

Until then, Martha had been fairly independent, but things were quickly changing and I needed to find someone to be with her while I was at work. Not long before, I was forced to take Martha’s car keys away. And then there was that scare when Martha walked out of her art class without telling anyone good-bye. (Fortunately, she somehow showed up at my office five blocks away and eight floors up just as I was scurrying to the elevator.)   

Gregarious her whole life, Martha no longer was mixing easily with strangers, so the transition to Tricia took some thought. Our sister-in-law KK and I decided that she would walk in with her “good friend Tricia” for the first few mornings. This is the same KK who encouraged Martha with her painting. “The three of us went to movies and lunch and did other things for a few days,” Tricia says, until Martha saw her as a “good friend” too.

To brief herself on what to expect with Alzheimer’s, Tricia says she read several caregiver websites. “But they were depressing.” As a consequence, Tricia relied on her wits and common sense while, as she says, “depending on the Lord and Holy Spirit to help guide me.”

Tricia soon learned how important touch was to Martha. “We held hands almost everywhere we went. There’s so much love communicated with hugging and holding hands.” (Psst…that sounds like good advice for anyone going through a serious crisis.)

As their first year progressed, Tricia says the two biggest problems were Martha’s pacing and stubbornness. When in the house, “Martha would pace and pace and pace. I was afraid she’d wear herself out.” Finally, Tricia hit on the idea of driving Martha around town with the radio on. “Martha settled right down.” (We used to do that with our young children when they wouldn’t stop crying. Worked like a charm.)

“One of the hardest things for me to learn,” Tricia says, is what’s called “living in the moment.”

She remembers their first time grocery shopping together. “Martha was getting into the swing of the store’s piped-in music. Suddenly she stopped, turned around and pointed at me. She wanted me to dance with her right there in the grocery aisle. I was so embarrassed. But I finally thought, Oh what the heck, and we started dancing.” They eventually did a lot of dancing in grocery store aisles, Tricia says. And to this day, she doesn’t know what the other shoppers were thinking, and she doesn’t care.

That reminds me of an idea I read about years later. A caregiver daughter had an affectionate mother, who would walk right up to perfect strangers and engage them in an unintelligible language. After suffering through the embarrassment of this one time too many, the daughter had an aha moment. She printed up small cards explaining her mother had Alzheimer’s, and on the flip side she thanked the persons for their patience and graciousness. She passed those cards out wherever her mother had a spontaneous encounter. I wish we’d thought of that.

One last thought from Tricia: “Don’t assume that someone with Alzheimer’s doesn’t understand what’s going on. I learned that pretty quickly with Martha.”

For example: I remember walking into the house after work, ready to relieve Tricia. “Hey, Martha and Tricia, what’s happening?” Martha was standing behind Tricia who was sitting on our couch watching Oprah. Martha looked at me, bent forward slightly, and put a finger to her lips for me to be quiet. What’s this? I wondered. Probably something random. As I came closer I saw Tricia crying. Oh my, Martha is protecting her.

Thank you, Tricia. 

Carlen
www.carlenmaddux.com

P.S. If you’d like to sign up for my free blog, you may by clicking here.

May I Ask You for a Special Favor?

I’m looking for a few good men and women. Actually, I’m looking for more than a few as I assemble my book’s Launch Team. I would be honored if you agreed to participate.

My book’s working title, you may remember, is A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. Ours is a true-life story. It’s not fiction, though I wish it were! It’s a realistic account covering 17 years, starting in 1997 with my wife’s Alzheimer's diagnosis. Martha had turned fifty just days earlier.

If you’re interested in becoming a team member, I’ll send you a copy of the manuscript when it’s ready, probably in June. I have two simple requests to ask in return, which I explain below. To sign on, email me at carlen@carlenmaddux.com.

Here are some reasons why you might consider joining my Launch Team…  

First, you can help spread the word about a burgeoning crisis. The number of persons in the U.S. with Alzheimer’s is expected to grow by one-third or more in the next decade—to 7.3-million by 2025. But that’s only part of the story. For every person with Alzheimer’s, roughly three more are primary or secondary caregivers, swelling the number of those directly impacted to 29.2-million. And that doesn’t count extended family members and friends. (Source: Alzheimer’s Association).  

Another reason: Few books explore the painful spiritual and emotional issues that are sure to surface during a crisis like Alzheimer’s. Plenty of caregiver guidebooks are on the market today, many of them with good practical advice. But only a few discuss the spiritual dimensions with any depth.

My book’s focus is on the spiritual path that emerged out of the darkness threatening to engulf our family. Alzheimer’s is the context of our story, not its focus. This path was not an easy one, for the issues arising along the way were too often dark and unfathomable. But the further we walked, the more we realized a light was breaking through from somewhere deep within, bracing us with hope, love, and joy.

This journey led me to travel halfway around the world to Australia; and to start writing what evolved into a 14-volume journal; and to spend over 300 days in several monasteries, including a week in Thomas Merton’s hermitage at Gethsemani.

The stories I share have the potential to touch persons faced with a variety of crises, not just Alzheimer’s. Dr. Landy Anderton, a clinical psychologist and early reader of my manuscript, told me: “This book really belongs in the hands of every family coping with a crisis.”

Our story as seen through the eyes of a friend:
“The reader who travels with Carlen into the mysterious depths of human life, human tragedy, and human relationships will be led to reflect, to ponder, and to expand. Carlen is a strong writer. One of his strengths is that, as he tells this story, his words invite us into conversation. His style invites dialogue between reader and author. Carlen does not seek to convince others of anything, certainly not anything that could be called 'religious.' Rather, he invites us to share—to share his journey, to share his discovery of how his search led his mind and soul beyond problem-solving into acceptance, peace, celebration, and gratitude.”

This statement comes from my book’s foreword, which was written by Rev. Dr. Art Ross. He left our church in St. Petersburg three years before Martha was diagnosed. Art is the former chair of the Board of Trustees at Union Presbyterian Seminary. He retired in 2009 from White Memorial Presbyterian Church in Raleigh, NC, where he recently was honored as pastor emeritus.

I would be delighted if you volunteered for my Launch Team. If you do, you may read the manuscript either in digital or print form—your choice. At this stage the manuscript will have been edited for structure, clarity, and flow, but not final-proofed for typos. Still, the copy should be reasonably clean. I’ll send the version you prefer as soon as it’s ready.

My book probably will be published sometime in October. When it is, I have two simple requests of my Launch Team volunteers:

1)    Please tell your many friends and contacts about my book in the ways that are the most natural for you—word-of-mouth, email, Facebook, Twitter, Instagram, whatever is most comfortable.

 2)   Write a short review on Amazon.com. If you’ve never done that, it’s simple and you can use a pseudonym rather than your name if you prefer. You do NOT have to be a professional writer. All you do is share 3 or 4 points about what our story meant to you. I’ll give you clear instructions on how to proceed. This, of course, is strictly voluntary on your part. 

The reason for the Amazon review? No one outside of Amazon knows how it judges books to be well received or not, especially new ones. It’s pretty clear, though, that 50 reviews going up shortly after publication are better than one.

I’m limiting my Launch Team size to the first 29 persons who respond. I’m asking that you keep your advance copy in confidence and not share with anyone else.

The deadline to sign up is Saturday, June 11, 2016. To do so, please email me at carlen@carlenmaddux.com. Subject Line: LAUNCH TEAM.

Oh, I almost forgot! Any Launch Team member desiring a published copy of my book can receive it at my author’s discounted cost (plus shipping). The retail price is not yet set.

Thank you,
Carlen
www.carlenmaddux.com

P.S. Have a good Memorial Day weekend, remembering what we're remembering.

P.P.S. If you haven’t signed up for my free blog, you may by clicking here.

A Sampling of My Readings Along the Way

“It is important for our own spiritual growth that we persevere in trying to know more of God. True and satisfying knowledge of anything is always the fruit of mental exertion and the exercise of our consciousness.”

Sundar Singh’s statement in Wisdom of the Sadhu is as concise a reason as any as to why I went searching when my wife Martha was diagnosed with Alzheimer’s in 1997. But I was searching for a way out of that fathomless maze, not necessarily for God.

Reared in an Indian Sikh family, Sundar Singh was an early 20th century mystic who, to his surprise, became a follower of the Christ at a young age. His book is one of many I scoured on spirituality, mostly Christian, and on health, medicine, and caregiving. A few were what you would call orthodox or traditional. Many were from off the beaten path—at least the path I’d been traveling on. I was desperate and in need of answers, and mainstream medicine and religion offered none.

Some have asked me what books did I read? So I’ve decided to share this sampling of books below, which I tapped through the early years of our 17-year journey.

Thanks for your attention.
Carlen
www.carlenmaddux.com

P.S. If you’d like to sign up for my free blog posts, you can by clicking this link.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Spiritual Practice and Discipline

Brother Lawrence, The Practice of the Presence of God.
Buechner, Frederick, Telling Secrets: A Memoir.
Bunyan, John, The Pilgrim’s Progress. Edited by Susan L. Rattiner.

Chesterton, G.K., Orthodoxy: The Romance of Faith.
Eddy, Mary Baker
~Science and Health with Key to the Scriptures.
~Prose Works.
Foster, Richard J.
~Celebration of Discipline: The Path to Spiritual Growth.
~Streams of Living Water: Essential Practices from the Six Great Traditions of Christian Faith.

Fox, Emmet
~The Ten Commandments: The Master Key to Life.
~The Sermon on the Mount.
Glennon, Jim
~How Can I Find Healing?
~Your Healing Is Within You.
Goldsmith, Joel S.
~The Art of Meditation.
~The Thunder of Silence.

James, William, The Varieties of Religious Experience: A Study in Human Nature.
Keating, Thomas, Open Mind, Open Heart: The Contemplative Dimension of the Gospel.
Kelsey, Morton T., The Other Side of Silence: A Guide to Christian Meditation.

Kelty, Matthew, OCSO
~Gethsemani Homilies. Edited by William O. Paulsell.
~My Song Is of Mercy: Writings of Matthew Kelty, Monk of Gethsemani. Edited by Michael Downey.
~Sermons in a Monastery: Chapter Talks.
~The Call of Wild Geese: Monastic Homilies.
Lamott, Anne, Traveling Mercies: Some Thoughts on Faith.
Lewis, C.S., A Grief Observed.

MacNutt, Francis, Healing.
Main, John, OSB
~Moment of Christ: The Path of Meditation.
~Word into Silence.
May, Gerald G., MD, Will and Spirit: A Contemplative Psychology.

Merton, Thomas
~Contemplative Prayer.
~No Man Is an Island.
~Opening the Bible.
~Spiritual Direction & Meditation.
~The Asian Journal of Thomas Merton. Edited by Naomi Burton, Brother Patrick Hart, and James Laughlin from original notebooks.
~The Seven Storey Mountain: An Autobiography of Faith.
~The Wisdom of the Desert.
Metaxas, Eric, Bonhoeffer: Pastor, Martyr, Prophet, Spy.

Metzger, Bruce M. and Herbert G. May, Editors. The New Oxford Annotated Bible with the Apocrypha. Revised Standard Version. My emphasis on: Book of Job; The Psalms; The Gospel of Matthew’s Sermon on the Mount and Kingdom parables; The Gospel stories on Jesus’ execution and resurrection; The Revelation to John.
Pennington, M. Basil, OCSO
~Centering Prayer: Renewing an Ancient Christian Prayer Form.
~Lectio Divina: Renewing the Ancient Practice of Praying the Scriptures.
St. John of the Cross, Translated and edited by E. Allison Peers.
~Ascent of Mount Carmel.
~Dark Night of the Soul.

St. Teresa of Avila, Interior Castle. Translated and edited by E. Allison Peers.
Sandford, John and Paula, The Transformation of the Inner Man.
Sanford, Agnes
~Sealed Orders.
~The Healing Gifts of the Spirit.
~The Healing Light. 

Sellner, Edward C., Wisdom of the Celtic Saints.
Sheen, Fulton J., Life of Christ.
Singh, Sundar, Wisdom of the Sadhu: Teachings of Sundar Singh. Compiled and edited by Kim Comer.

The Classics of Western Spirituality. (New York: Paulist Press).
~Athanasius of Alexandria, Athanasius: The Life of Antony and the Letter to Marcellinus. Translated by Robert C. Gregg.
~Author Unknown, The Cloud of Unknowing. Edited by Father James Walsh.
~Cassian, John, John Cassian Conferences. Translated by Colm Luibheid.

Waddell, Helen, translation and introduction, The Desert Fathers. Preface by Basil Pennington, OCSO.
Yancey, Philip, What’s So Amazing About Grace?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Health, Medical, and Caregiving

Balch, James F., MD, and Phyllis A. Balch, CNC, Prescripton for Nutritional Healing: A Practical A-Z Reference to Drug-free Remedies Using Vitamins, Minerals, Herbs & Food Supplements. 2nd edition. Part One; Part Two: Alzheimer’s Disease.
Benson, Herbert, MD, with William Proctor, Beyond the Relaxation Response.
Cannon, Walter B., MD, The Way of an Investigator: A Scientist’s Experiences in Medical Research.

Cousins, Norman
~Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration.
~Head First: The Biology of Hope.
Dossey, Larry, MD, Healing Words: The Power of Prayer and the Practice of Medicine.
Eisenberg, David, MD, with Thomas Lee Wright. Encounters With Qi: Exploring Chinese Medicine.

Gray-Davidson, Frena, Alzheimer’s Disease: Frequently Asked Questions.
Khalsa, Dharma Singh, MD, with Cameron Stauth, Brain Longevity: The Breakthrough Medical Program that Improves Your Mind and Memory.
Larson, David E., MD, editor-in-chief, Mayo Clinic Family Health Book: The Ultimate Illustrated Home Medical Reference. 2nd edition. Part II; Part IV: Your Brain and Nervous System.

Mace, Nancy L., MA, and Peter V. Rabins, MD, MPH, The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss Later in Life.
Murray, Michael, ND, and Joseph Pizzorno, ND, Encyclopedia of Natural Medicine. Revised 2nd edition. Parts 1 & II; Part III: Alzheimer’s Disease.
Ornstein, Robert, PhD, and David Sobel, MD, The Healing Brain: Breakthrough Discoveries About How the Brain Keeps Us Healthy.

Selye, Hans, MD, The Stress of Life.
Simonton, O. Carl, MD, Stephanie Matthews-Simonton, and James L. Creighton, Getting Well Again: A Step-by-Step, Self-Help Guide to Overcoming Cancer for Patients and Their Families.

Five Top Tips When Caring for One You Love

TIP 1: Trust your own judgment ... you are the only expert. No one else knows this person you care for as you do. No one can tell what the best care is or why something is happening as well as you.

TIP 2: While you are learning how to change, how to serve, and how to help, give yourself as much devotion as you give the person you look after. This echoes my earlier post The Caregiver’s First Commandment.

These tips come from Frena Gray-Davidson in her book Alzheimer’s Disease Frequently Asked Questions: Making Sense of the Journey, which came out a year or so after my wife Martha was diagnosed with Alzheimer’s in 1997. Of the many books I read I put this one in the top five. Ms. Gray-Davidson, a professional caregiver, blends the practical needs with the spiritual issues in a way that helped me get centered on the tasks facing us. My experience tells me that if these spiritual issues aren’t addressed, it could leave the caregiver and care receiver crippled.

TIP 3: Pay close attention to your spiritual life and allow it to help you through this rite of passage. Spiritual life does not refer to any particular religion or discipline but to a profound sense of being that supports you at the deepest level … If you do all you can to feed the spiritual—through pursuing serenity, meditation, prayer, the peace of nature, therapy—you can avoid falling into constant crisis.

Ms. Gray-Davidson says: “The process of Alzheimer’s disease is connected with losses, difficulties, and agonies. The central difficulty, however, and one that has been largely ignored by Alzheimer’s professionals, is the crisis of dysfunctional caregiving. It is not that Alzheimer’s disease itself is so unrelentingly consuming; what are so destructive are the difficult emotional issues that Alzheimer’s raises and that many people do not address.”

“There is no ‘why?’ that can be answered. The most useful question you can ask yourself is not ‘why?’ but ‘how?’ ‘How am I to undertake this journey?’ ‘How shall I learn what to do?’ ‘How shall I cope?’ … If your life is one of avoidance, blame, and denial about important issues, this passage will be unbearably painful, but if you face it through, you can find great joy even within the pain.”

TIP 4: Keep a journal in which you are as truthful as you can be. As well as being a useful outlet for unmentionable feelings, a journal will gradually accumulate your knowledge and help you see how your journey progresses.

“Like any other task, becoming an Alzheimer’s caregiver requires you to learn special skills. This book will teach you much of what you need to know and lead you toward the changes you may have to undergo. Amazingly enough, if you are willing to make those changes and learn those skills … You will find strengths you did not imagine you had, and they will be there for you to draw on the rest of your life.”

Interestingly, I think many of her insights could be applied to a wide variety of caregiving situations other than Alzheimer’s.

She continues: “Nothing, of course, removes all the darkness of the journey. No one could ever say that Alzheimer’s is a good disease, and that is not the message of this book. The message is that the destructive gloom-and-doom approach gets us nowhere and gives us nothing … Negativity and despair usually cover up the fact that a caregiver is refusing to change and is actually addicted to the stress of caregiving.”

TIP 5: Laugh whenever you can, hug as much as you can, and remember that love is the only useful management tool.

Wrapping up, I’m offering Alzheimer’s Disease Frequently Asked Questions for my next book giveaway. Here are some quick rules if you want to sign up for this drawing:

• Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Friday and next Wednesday, May 11, by 11:59 PM EDT. Indicate that you would like to be included in this month’s book giveaway. It will help me if you put in the subject line: BOOK GIVEAWAY.
• One person—maybe you!—will be selected at random from those entering. I will send you a confirmation email on Thursday, May 12. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random.
• For more details, click Book Giveaway.

One last comment from Ms. Gray-Davidson: “This book is not about the nuts-and-bolts of Alzheimer’s caregiving—although there are enough of those in these pages to build a battleship. It is about the ways in which you may deepen your own self-understanding, freedom, integrity, and capacity to love.”

If you’re not the lucky one to win this book drawing, it could be well worth your investment to buy the book.

Oh, one other thing: Amazon has a new feature called AmazonSmile in which they will give a small percentage of your purchase to the charity of your choice. I signed up for the Alzheimer’s Association, and will make all my future buys via this feature.

Thanks,
Carlen
www.carlenmaddux.com

P.S. I returned my manuscript on Monday to Paraclete Press’s editor. A lot of changes and tightening are making our story even stronger. It’s still coming out next fall, but I’m not sure which month.

P.P.S. If you’d like to receive my free weekly posts, you can by clicking here.

Archive of My Posts

Below is an archive of all my posts to date, starting in September 2015. This also includes the posts I’d written prior to the launch of my book a year later. To read any of them, click on the title shown. This archive will be updated on an ongoing basis.

Thanks, Carlen
carlen@carlenmaddux.com

PRE-LAUNCH POSTS…

• To Be Afraid or Not Be Afraid

• A Spiritual Journey Doesn’t Require Much. Either You Go All In or You Stay Out

• It’s Not Real Comfortable Outside Our Comfort Zones, Is It? But That’s Where Growth Comes

• Either I Focus on My Problems or I Focus on God. I Can’t Do Both

• Am I Too Busy and Important to Be Quiet?

• If You Step on to the Path Guides Will Come

• The Best Advice I Ever Had Came in the First Grade—Stop! Look! Listen!

• A Spiritual Journey Can Be Lonely, So Invite Your Family and Close Friends Along

• God Loves Me, God Loves Me Not. Could This Be the Most Important Lesson I’ll Ever Learn?

WEEKLY POSTS...

09.18.15… Where’s the Joy in an Unimaginable Tragedy?
09.25.15… Finding Unexpected Gifts Deep in a Crisis

10.02.15… At 52, I learned What Real Fear Is
10.09.15… The Power of Art and Poetry in a Crisis
10.16.15… Why I Started a Blog-Newsletter
10.23.15… How Keeping a Journal Helped Save My Life
10.30.15… Why I Spent 300 Days in a Monastery

11.06.15… We Were On This Path All Along, but I Didn’t Realize It
11.13.15… What Would I, at 70, Tell Me at 40?
11.20.15… My One Regret
11.27.15… A Thanksgiving Memory

12.04.15… The Latest News on My Book
12.11.15… The Hardest Thing I Ever Had to Do
12.18.15… A Christmas Memory

01.08.16… Why Your Story Calls Out Mine, and Mine Yours
01.15.16… “That’s My Mom, Bringing Joy to Others”
01.22.16… Why Didn’t I Just Accept Our Fate, and Live with It?
01.29.16… Thomas Merton, Me, and My Free Book Giveaway

02.05.16… What a Doctor Prescribes on Learning He Has Alzheimer’s
02.12.16… How Learning to Forgive Changed My Life—Fr. Matthew Kelty
02.19.16… How My Book Is Being Launched
02.26.16… The Monk of Mercy and My Next Book Giveaway

03.04.16… How a Friend Found Meaning in a Job Loss
03.11.16… “I Didn’t Say It Was Easy, Carlen. I Said It Works”
03.18.16… “To Say Anything More Is Dangerous”
03.25.16… Peering into Anne Lamott’s Weirdly Joyous World

04.01.16… Is Alzheimer’s a Baby-Boomer’s Greatest Fear?
04.08.16… What Is the Caregiver’s First Commandment?
04.15.16… Why Alzheimer's Can Shred Your Confidence
04.22.16... A Quick Update on My Book

05.06.16... Five Top Tips When Caring for One You Love
05.13.16… A Sampling of My Readings Along the Way
05.26.16... May I Ask You for a Special Favor?

06.09.16… A Few Simple (and Effective) Tips from My Wife’s Caregiver
06.23.16… Do You Want to See My Book’s Cover?

        07.07.16… Discovering a Bedrock Hope When I Was Most Desperate        
        07.21.16… Why Have These People Not Given Up?

08.04.16... Surprise! Now You Can Pre-order My Book on Amazon
08.18.16... Our Community's Surge in Interest, Strength, and Influence

09.01.16... Somewhere Over the Rainbow
09.13.16... You Can Win a Free Copy of My Book
09.28.16… ‘A Path Revealed’ Is Now Released

10.21.16... What Are People Saying About My Book?
11.10.16... Why Did I Start Searching, and What Was I Looking For?
11.23.16... A Thanksgiving Memory Redux

12.08.16... Five Simple Questions, No Easy Answers
12.22.16... May I Share with You These Entries from My Journal?

01.05.17... Why Being Gentle with Yourself Can Be So Hard
01.19.17... A Friend Asks About Our Odyssey Through Alzheimer's

02.02.17... What This Doctor Is Learning About Caregiving
02.16.17... It's About Quality of Life, Not Quantity

03.02.17... Desperate, I Needed to Be Quiet and Still
03.16.17... A Thank You Note from Me to You
03.30.17... Will You Help Me?

04.13.17... May I Introduce You to One of My Heroes?
04.27.17... One Year Later: This Doctor with Alzheimer's Diagnoses His Progress

06.01.17... What I Heard on My Book Tour
06.22.17... Are You Going to Love Me Forever and Ever?

07.13.17... Eight Ways You Can Help a Friend Trapped by Alzheimer's
08.13.17... A Buddhist, a Christian, and a Jew Go to a Birthday Party
08.24.17... A Love Story: Love Means Having to Say Goodbye

09.21.17... Irma, Alzheimer's, Martha and Me
10.12.17... Because That's What Friends Do

11.02.17... My Busy Three Weeks
11.23.17... From One Caregiver to Another

12.14.17... Why He Steps into the World of Alzheimer's 
12.24.17... Remembering the Forgotten

01.18.18... Alzheimer's Communication
01.31.18... After 27 Years, Their Steadfast Dream for an Alzheimer's Stamp Turns True 

03.01.18... How She Learned the Art of Contemplative Care
03.28.18... Why This Neurologist Became a Hospital Chaplain

04.12.18... The New Alzheimer's Stamp Is Off to a Strong Start
05.03.18... Why I Went Public with Our Family's Alzheimer's Story

05.24.18... What More Is This Doctor Doing About His Early Dementia?
06.21.18... A Conversation with My Wife's Neurologist
06.25.18... The Joy of Martha's Art

07.11.18... The Stigma of Dementia: Is the Fog Finally Lifting? 
08.28.18... Her Prayer for All Who Live with Dementia Worldwide

09.20.18… What This Care Partner Is Still Learning Years Later
10.11.18… How Can Forgiveness Improve a Caregiver’s Life?
10.24.18… What His Father Taught This Doctor About Alzheimer’s

11.02.18… “Keep Asking Questions Until You Get the Answers”
12.06.18… Can We Talk? That’s Me at 73 Asking Me at 52
12.27.18… In the Face of Fear, Grace

01.22.19… On Defusing the Stigma of Dementia
02.06.19… “When You Cared for Your Mom, You Stole My Joy”
03.21.19… One Caregiver’s Story: ‘Advocacy Saved My Life’

05.10.19… What the World Needs Now
06.05.19… Out of Deep Despair, a Seasoned Hope

07.26.19… To Test for Genetics, or Not? Read On…
08.08.19… Three Voices of Encouragement
08.28.19… Illuminating the Dark Heart of Dementia

09.13.19… 31 Lessons Learned from Persons Living with Dementia & Care Partners
09.25.19… “You either get on with living, or get on with dying. I’m getting on with living.
10.16.19… The Joy in Knowing and in Being Known

11.08.19… Pay It Forward: From One Caregiver to the Next
12.18.19… Her Strategies for Living Day to Day with Alzheimer’s
12.24.19… Grieving at Christmas

01.16.20… Why Sharing Our Stories Is So Important
02.05.20… ‘The Lessons My Mother Taught Me on Our 30-Year Journey’
05.14.20… Emerging from a Hard Season of Dementia, Pandemic, and Death

06.18.20… Let Me Breathe!
08.13.20… You’re Smart to Be Alert to This Hidden Grief
10.01.20… The Countdown Begins: Day 5-4-3-2-1

11.11.20… A Hard Thing for Me to Learn as a Caregiver
11.24.20… Our First Thanksgiving
12.17.20… A Prayer for the Caregiver’s Struggle this Holiday Season

01.27.21… A Doctor Speaks to the Spiritual Dimensions of Caregiving

06.16.22… My Song, My Ode, to Caregivers and Their Loved Ones Who Live with alzheimer’s

12.08.22… Two Meditations for This Season

01.26.23… A Conversation Worth Your Time
04.12.23… What Would I at 77 Tell Myself at 47?

A Quick Update on My Book

I’m deep into reviewing and making changes in my manuscript, so I’ll make this short and sweet. 

Paraclete’s editor, Phil Fox Rose, says my book is still coming out this fall. Which month is yet to be determined. There are a lot of moving parts to this process, and Phil, his staff, and I have much work to do. But we’re making good progress. So far we’ve had very few disagreements, and those few have been resolved quickly and amicably. This is yet one more reason I feel fortunate to be working with Phil and Paraclete Press.

Their production staff surprised me by presenting a cover concept on Monday. I didn’t realize we’d gotten that far. The cover is attractive, but it didn’t reflect our story so I asked them to reconsider.

Simply put, our story is about a path emerging out of a darkness that threatened to engulf our family. This is a rough and uneven path, but true. It kept calling Martha, our children, and me forward. The further we walked the more we realized a light was breaking through from deep within, yielding tears of hope, love, and joy.

     Kathryn, Rachel, Martha, and David cooling their heels

My book's working title and subtitle continue to survive the editorial process. When the book comes off the press, I’ll know for sure whether A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s has stuck.

That’s the news on my book.

Thanks, Carlen
carlen@carlenmaddux.com

Why Alzheimer's Can Shred Your Confidence

Many of you know firsthand that caring for a loved one with Alzheimer’s will test you in ways you never imagined. And your self-image and confidence will be challenged… sorry, wrong word. Your self-image and confidence will at times be shredded, stripped of all illusions and all that you thought was good about yourself.

Many caregiver guide books—for Alzheimer’s and other major crises—are available today with good practical advice. But unless those guides deal with the deep, and frequently dark, spiritual issues that are sure to surface, such advice will leave caregivers and loved ones hobbling on one leg.   

A personal example: In 1999, sixteen months after my wife Martha was diagnosed with Alzheimer’s, our Sunday school class was reading Philip Yancey’s book What’s So Amazing About Grace? This is my journal entry dated February 11: “I laughed and cried when Philip Yancey described himself as a ‘recovering legalist.’ I immediately knew what he was talking about.”

This entry nailed my struggle in trying to care for Martha. I was swinging between wanting to control an uncontrollable situation and needing a break from it all.  

For those not into religious lingo, let me explain Yancey’s description this way: As I read him, it became clear there is not a whit’s difference between a self-righteous “legalist” and an alcoholic. Both are addicted; both try to control their relationships and surroundings; both can be passive-aggressive; and both often are driven by fear, anxiety, anger, and depression.

Hopefully, you are among the fortunate ones not to get entrapped by certain harsh rules of right and wrong as you grew up, those rules—religious or otherwise—that often can shape our character and behavior negatively over a lifetime. I wasn’t that fortunate.

Yancey gave me a name for the pain I’d felt in many spheres of my life—self-righteous legalist. And I wanted out! I not only wanted out of this pain, I also wanted out of the situation Martha and I were trapped in, which too often accentuated my uglier traits.

Last week I discussed what I call the Caregiver’s First Commandment: “If you’re going to care for a loved one, then you also must learn to take care of yourself.”

Swimming against this current called Alzheimer’s, I tried to do just that—to take care of myself while caring for Martha.

As I did it came ever more clear to me: I was in as much need of healing in my own way as Martha was in hers. But I wasn’t sure how or where to find it.

One practice Martha and I did start was meditation, which I’ve discussed already.

A journal entry, November 21, 1998… “Martha and I have meditated fairly consistently, twice a day, 20-30 minutes a time for almost a year. Two days ago I experienced a lightness of spirit never felt before, twice in fact. But since then the struggles with my “demons” have intensified. Father Matthew Kelty is right, I think, on two fronts: 1) Meditation will make you face reality; and 2) Where God is, evil lurks ready to pounce. The message I’m getting is this: As God draws me closer, my old habits are rebelling.”

Another practice I began to explore was spiritual healing. This was a huge change for me; my bias was strongly against so-called “faith healing.” I’d seen too many hucksters pass thru my small Tennessee hometown and on TV. But I learned early that a true spiritual path can force you out of your comfort zones. The first book I picked up on the subject was at the downtown Episcopal book store; it was called Healing by Francis MacNutt, a former Catholic priest. His approach was much more reasonable than I had anticipated.    

Nov. 27, 1997… “In another book, The Prayer that Heals, MacNutt says that the person who has a harder time receiving healing is ‘controlled … who has to think everything through before acting; a person who is filled with explanations and wants you to give them, too; a person who has furrows in the brow and a critical spirit. Often, such persons are religious and try to live exemplary lives, but letting go and receiving love—even from God—is hard for them.’”

Ouch!

“This, regrettably, describes me,” I wrote in closing that journal entry.

January 12-14, 1999… “Martha and I went to Francis MacNutt’s 3-day conference in Jacksonville, FL. One concept discussed there was to pay attention to the images that come to mind. Do not force your imagination to conjure up images. Yet don’t ignore the images that may arise. Pray over those images until God takes you to their source, then let God heal or rejoice with you over that memory, be it good or bad. God’s love is a river of life. Let it flow over the boulders of your heart and mind until they are washed away.”

Tapping into my imagination as another avenue for healing piqued my curiosity. I’ll share a couple of personal examples in a later post.    

Thank you,

Carlen
carlen@carlenmaddux.com

P.S. Great News! I just received my manuscript from Paraclete’s editor, Phil Fox Rose. Now the work begins. For those of you just joining us, this is my book’s working title and subtitle: A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. It’s scheduled to come out next fall. While I work through Phil’s comments and edits, I’ll send you a couple of different kinds of posts. Plus, I may have to skip a Friday or two, depending on any manuscript complications. Stay tuned. 

P.P.S. If you'd like to receive my free weekly posts, you can by clicking here.

What Is the Caregiver's First Commandment?

“I found a copper penny in the street—roughed up, beaten, and defaced by the traffic. I picked it up and kept it, for there’s still value there. As I dropped it in my pocket, I thought: There’s my life, too. Roughed up, beaten, and defaced, yet God still is the center of my soul, to paraphrase St. John of the Cross from the 16th century.”

This excerpt from my journal is dated October 18, 1998—a year after my wife Martha was diagnosed with Alzheimer’s. As you might suspect, the entries in my 14-volume journal swing wildly from fear and despair to hope, trust, and joy, especially through the early years.

When we got this troubling news, I had a fearful sense that my experience was too shallow and thin for what lay ahead. As much as anything, this desperate sense is what drove me to search for answers in many realms—medical, physical, emotional, mental, relational, and spiritual.

Based on my conversations, readings, and experience since 1997, I finally learned this about caring for Martha: If you’re going to care for a loved one, then you also must take care of yourself.

I call this the ‘Caregiver’s First Commandment.’

This hard-earned principle applies to anyone, not just those dealing with Alzheimer’s. I think most of us have to learn through experience that we must let love, humor, trust, intelligence, and joy filter through our hearts and minds if the brazenness of fear is to be dispelled. I continue to learn this.  

Thomas Merton put it this way: “He who attempts to act and do things for others... without deepening his own self-understanding, freedom, integrity, and capacity to love, will not have anything to give others.” I copied this journal entry from the book Alzheimer’s Disease: Frequently Asked Questions by Frena Gray-Davidson.

A few weeks ago I posted some raw notes from my journal. This was received well enough that I plan to do this more often as we go forward. There’s real value in sharing our reflective thoughts. But there’s also equal value in sharing our feelings in real time. It permits the reader to see that they are not alone in the midst of their crisis. My crisis is not yours, but there can be a shared bonding—a shared community, if you will—if we’re willing to open ourselves to each other and to those raw feelings.

I looked for ways to shore up Martha’s confidence, which had been shattered by her news. I shared last fall the delightful experience she had with water-color painting.

Here are some other journal entries highlighting moments of both confidence and disappointment:

November 23, 1997… This was Martha’s first Sunday to sing in the choir. She looked like a natural and was beautiful in that robe. Singing is one of her great passions.

March 25, 1998… The YWCA recognized Martha as Outstanding Woman in Tampa Bay in the Civic Volunteer category. Great confidence booster! Martha had her buddies and me there to share in the glow—Tedi, Jennie, Nancy, KK, Grace Elizabeth.

Friday, March 27, 1998… Martha was one of the many VIPs invited to open the stadium for the Tampa Bay Devil Rays baseball team. (NOTE: Martha had been the swing vote on the City Council that decided to build what is now Tropicana Field.) We saw them play their very first game there—beat the Atlanta Braves 5-0 in a spring exhibition.

November 26, 1997… Martha began an experimental test program through our neurologist. Don’t know whether she’s taking a placebo or the experimental drug, called Lazabemide. It sounds hopeful.

January 1998… (NOTE: At the time of Martha’s diagnosis, aluminum was thought to be a contributing cause of Alzheimer’s—maybe.) Once I read this, I tossed out all aluminum cookware. And I threw out all deodorants after I found one that didn’t contain aluminum. Do you know how many deodorants have aluminum?! I also ordered a water sample kit to test the local water for aluminum.

(NOTE: A couple of years later, researchers announced that this aluminum warning was a false alarm.)

February 1, 1998… Four months after her diagnosis Martha decided it was time to tell Frank and Grace Elizabeth (her parents), and we did at their house. It went well as could be expected. They were shocked, but very supportive.

A Note to our children...

Thanksgiving 1998

Dearest Rachel, Kathryn, & David…

This day, this year is especially meaningful to Mommie and me. You’ve shared fully in our fears and grief. We want you to share in our joy, too.

Enclosed are some thoughts spinning out of our 12-month visit with Mommie’s doctor. Your love, your warmth, and your prayers have been an incredible healing force in our fight with Mommie’s Alzheimer’s.

Happy Thanksgiving!

Love, Mommie & Daddy

The enclosed is from my journal…

November 24, 1998

12-month review of Martha. Real good news! Her doctor says he detects no change in Martha from 12 months ago, maybe even a slight improvement. Short of a marked or full recovery, stabilization was our goal the past 12 months. Persons Martha’s age (50 at the time of her diagnosis) often decline precipitously, the doctor says. Martha has not. What has stabilized her?

• Martha’s experimental medication? Or was she on a placebo? (NOTE: Several months later we learned the drug was proved ineffective.)
• Exercise, especially swimming?
• Prayers of Father Matthew and Sister Elaine? Lacy’s prayers? Prayers of our friends?
• Our meditation and prayers for Martha’s healing?
• Martha’s staying active socially?
• My increased involvement in Martha’s life?
• The vitamin supplements heavy on anti-oxidants?
• Martha’s positive outlook and faith? Mine?
• The children’s support? Martha’s family’s?
• The doctor and his staff’s warmth and forthrightness?

Some or all of these things may have helped. Then maybe there’s something we haven’t even identified. I happen to believe all are contributing factors. Seeking God’s heart permits a healing atmosphere to form around us, within which these actions do have influence and within which the healing qualities of Martha’s body and mind emerge.

Thank you for your interest in these notes.

Carlen
www.carlenmaddux.com

P.S. Congratulations to Susan S., who won Anne Lamott’s book Traveling Mercies.

P.P.S. If you’d like to receive my free weekly posts, you may by clicking here.  

Is Alzheimer's a Baby Boomer's Greatest Fear?

All but four or five hands went up when I asked the question: “How many of you have a family member or friend who’s been touched by Alzheimer’s?”

I was speaking to about fifty members and guests of the Downtown St. Petersburg Rotary Club, one of the more active civic clubs in town.

  For my concerned friends: I did have a coat and tie on for my talk            with Rotary.

Frankly, I was surprised by the show of hands. I think I was expecting to see half of the audience, at most, acknowledging they’ve experienced the fallout from this disease to one degree or another.

But 45 of those 50 in attendance?!

Granted, this was a small sample of an older than average age group, but our story may have a wider reach than I’ve imagined. 

Seeing those hands go up reinforced a growing conviction of mine: Alzheimer’s ranks right at the top of baby boomers’ fears as this generation steamrolls into its 60’s and 70’s. It’s up there with cancer. 

I’ve written a manuscript and a lot of on-line posts about our family’s journey through Alzheimer’s, but this Rotary meeting was the first time I’ve talked publicly about our experience.

Despite being a bit rusty at public speaking, I could tell that more than a few in the audience seemed unusually attentive.

My friend Bob Carter told me afterwards that as I shared our experience he looked especially at those who didn’t know my wife Martha or me, and saw several with rather poignant looks on their faces.

I first read to these Rotarians an excerpt from an earlier post about the time we were told Martha has Alzheimer’s. She’d just turned fifty.

I also shared moments from our visit with the nun and the monk in Kentucky a few weeks after learning of Martha’s diagnosis.

Time was short, so I had to cut out some information from my talk, which you may find of interest. These facts and figures are from the Alzheimer’s Association and relate only to the United States:

1)    Alzheimer’s is the most common form of dementia. Early symptoms often include depression, apathy, and difficulty remembering recent conversations, names, and events. Later symptoms include impaired communication, disorientation, poor judgment, and difficulty speaking, swallowing, and walking.

2)    Alzheimer’s is the sixth-leading cause of death, and it’s the only one among the top ten causes of death that cannot be prevented, cured, or even slowed.

 3)    Between 2000 and 2013, deaths attributed to Alzheimer’s rose by 71 percent while deaths from other diseases declined—HIV/AIDS, down 52 percent; strokes, down 23 percent; heart disease, down 14 percent; prostate cancer, down 11 percent; and breast cancer, down 2 percent.

4)    Almost two-thirds of those persons with Alzheimer’s are women.

5)    Of those persons with Alzheimer’s, the burden shared by age group is:  

• Under 65—4 percent.    
• 65 to 74—15 percent.
• 75 to 84—43 percent.
• 85 and older—38 percen t.

6)    Of those persons 65 and older, one in nine has Alzheimer’s.

7)    An estimated 5.3 million individuals had Alzheimer’s in 2015. Approximately 200,000 are under 65.

8)    By 2025, the number of persons 65 and older with Alzheimer’s is estimated to grow from 5.1 million today to 7.2 million by 2025. That’s a 40 percent increase, barring any major medical breakthroughs.

      Source: 2015 Alzheimer’s Disease Facts and Figures report

These statistics are stark, and they can be scary. But I want to emphasize yet again that Alzheimer’s is not the focus of our family’s story. It’s the context: I can’t tell our story without talking about Alzheimer’s.

The focus of our story is the path that opened before us during our darkest hours. This path is not always easy to discern or to follow, but after several years it did lead Martha, our children, and me to a place that helped us transcend the emotional and mental distress precipitated by this disease.

These posts do not permit enough time or space to go into detail about where and how this path unfolded before us. That’s why I’ve written a book, which should come out this fall. Its working title-subtitle is A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s.  

Thank you,
Carlen
www.carlenmaddux.com

P.S. If you’d like to receive my free weekly posts, please click here.

Peering into Anne Lamott's Weirdly Joyous World

Anne Lamott is a rare bird. A free-styling child of the ‘60s, this California girl could very well go down as one of her generation’s top-prize, blue-ribbon theologians.

Ohhh … I can already hear some of my friends screaming at me, those with Calvinistic or Augustinian tendencies.

Those familiar with Lamott know this best-selling author is not an academic theologian. She’s a confessional-let-it-all-hang-out, how-can-I-get-through-this-day kind. What Lamott is so good at is taking those stuffy religious phrases that nobody understands other than a few academics, rips them open to see what’s inside, and then lays out the innards for us all to see. She’s Frederick Buechner-like in the way she wields the English language as a knife to slit open the meaning of conventional religious talk, except she’s a dash more California-hip with her use of slang.   

I had been hearing about her for awhile before reading any of her works. The first book of hers that I read three years ago was Traveling Mercies: Some Thoughts on Faith. “That sounds straight enough, in fact a little stiff,” I thought before deciding to buy it.

Was I in for a surprising joyride.

Lamott’s background and style couldn’t be further from mine, but there are some striking echoes between our “faith-journeys.” For instance, neither of us woke up to the thinness of our beliefs until our lives crashed on to the rocks of reality. Hers from one too many cocaine overdoses. Mine when my wife Martha was diagnosed with Alzheimer’s at age fifty.

I’ve decided therefore to make Traveling Mercies the third book I’m giving away. My two earlier ones were Thomas Merton's The Seven Storey Mountain and Father Matthew Kelty's My Song Is of Mercy. For those of you just joining us, I hold a free book drawing the last Friday of each month. That is, until I decide not to. You can catch the rules further down.

My writing can’t do justice to Lamott’s take on her life and views. So I’ll share three samples from Traveling Mercies.

In a section revealing her differing views of God when growing up, from pages 7 and 8:

“Looking back on the God my friend believed in, he seems a little erratic, not entirely unlike her father—God as borderline personality. It was like believing in the guy who ran the dime store, someone with a kind face but who was running behind and had already heard every one of your lame excuses a dozen times before—why you didn’t have a receipt, why you hadn’t noticed the product’s flaw before you bought it. This God could be loving and reassuring one minute, sure that you had potential, and then fiercely disappointed the next, noticing every little mistake and just in general what a fraud you really were. He was a God whom his children could talk to, confide in, and trust, unless his mood shifted suddenly and he decided instead to blow up Sodom and Gomorrah.”

When Anne Lamott felt like she was cracking up and going to die, she decided over serious doubts to visit an Episcopal minister named Bill, an old civil rights priest. Pages 41-43:

“I wasn’t remotely ready for Christianity, though. I mean, I wasn’t that far gone.”

“Still, I had never stopped believing in God since that day in Eva Grossman’s class. Mine was a patchwork God, sewn together from bits of rag and ribbon, Eastern and Western, pagan and Hebrew, everything but the kitchen sink and Jesus.”

“(Bill) was about the first Christian I ever met whom I could stand to be in the same room with. Most Christians seemed almost hostile in their belief that they were saved and you weren’t. Bill said it bothered him too, but you had to listen to what was underneath their words. What did it mean to be saved, I asked, although I knew the word smacked of Elmer Gantry for both of us.”

Here’s Lamott’s take on “grace” from page 139:    

“I understand that Auden meant grace in the theological sense, meant it as the force that infuses our lives and keeps letting us off the hook. It is unearned love—the love that goes before, that greets us on the way. It’s the help you receive when you have no bright ideas left, when you are empty and desperate and have discovered that your best thinking and most charming charm have failed you. Grace is the light or electricity or juice or breeze that takes you from that isolated place and puts you with others who are as startled and embarrassed and eventually grateful as you are to be there.”

If you're unfamiliar with Lamott, this should give you a taste of her style and wit. If you do know her but haven’t read this book, you may want to put your name into Carlen’s Lotto drawing.

Psst … don’t let Lamott’s progressive politics throw you off. She injects that stuff at unexpected moments. If you don't share her political viewpoint, just do an end run to get to the meaningful insights.

Here are some quick rules if you want to sign up for this drawing:

• Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Friday, March 25, and next Wednesday, March 30, by 11:59 PM EST. Indicate that you would like to be included in this month’s book giveaway. It will help me if you put in the subject line: BOOK GIVEAWAY.
• One person—maybe you!—will be selected at random from those entering. I will send you a confirmation email on Thursday, March 31. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random.
• For more details, click Book Giveaway.

Thanks for tuning in.

Carlen
www.carlenmaddux.com

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