What This Doctor Is Learning About Caregiving

When I asked Dr. Ed Anderson what his best moment in the past six years had been, he didn’t hesitate: “Seeing Bev hold and interact with our granddaughter soon after she was born. It was so instinctive for her.” They were visiting their son and family in Philadelphia.

Bev was diagnosed in 2011 with mild cognitive impairment. MCI can lead to Alzheimer’s, but not always. They’d been married about 42 years.

Ed is Bev’s primary caregiver while continuing full time in his practice of internal medicine in Nashville. Bev spent her career in education. “She was vibrant, warm, loving, and smart” with her students and, he says, with their three children at home. Today, Ed leaves Bev with a caregiver when he heads to the hospital or his office at seven or so; he returns home about five, when he becomes Bev’s full time caregiver in the evenings and weekends. In addition to their son, a daughter and her family live outside Atlanta and a daughter lives in Nashville. Bev and Ed have six grandchildren.

                     Bev and Ed

They do several things together when he’s home, Ed says. “I stumbled on adult coloring books, and that has become a major way for Bev to pass the time, both when I’m home and with caregivers.”

When the weather permits, they walk around Radnor Lake, a state park, on Sundays. And they go to Vanderbilt football and basketball games and share Titans tickets with three other couples. “Bev enjoys the basketball games and we sit with friends; the football not so much. I'll probably drop those tickets soon.” They also go to church most Sundays, “but I’m not sure how much Bev connects with these days.”

One of their worst moments was taking the car keys away. “Fortunately, I didn’t have to be the bad guy; the doctor who tested Bev was.” (That, too, was one of the hardest moments with my wife Martha, which is described in my book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s.)

Interestingly, both Bev and Martha went to Agnes Scott College in Atlanta, starting the same year in fact, 1965. Ed also entered Georgia Tech that year with a football scholarship; I was two years ahead of him. Our paths had not crossed in 50 years until he emailed me after seeing my post last fall on the Alzheimer's Association website.

           Granddaughter Grace hugging Bev

I asked Ed some more questions, to which he responded with candor and sensitivity…   

What kind of support do you have from friends or family? Real, tangible help, and not just moral support?

“Our daughter here in Nashville often is able to stay with her mother on Saturday mornings. Plus, a huge part of Bev’s care has been her group of friends. Karen, who’s a retired event planner, has prepared a weekly schedule since Bev stopped driving in the fall of 2015.” He showed me a sample calendar in which about 14 friends had signed up to help Bev get to her destinations during the course of a week. “The calendar now has changed from being mostly friends to mostly (paid) caregivers as Bev's needs changed.”

What are your evenings like when you get home?

“I do most of the meals and getting ready for bedtime. Meals are usually grilling, microwave veggies, and salad kits. And we eat out or get take-out a couple of times a week. Our dog Toby—Bev’s companion and my therapist—loves to ride, so it's fun to take him with us when we get take-out. Also for Christmas our kids gave us some delivered meals; I think they don’t trust my cooking.”

How did you notice that Bev might be having a problem?

“She began to lose and misplace things more than normal. There also were the changes in her sense of cleanliness and neatness; Bev often cleaned up after our housekeeper, but that suddenly stopped.”

“And then there was the time Bev went grocery shopping and left the keys in the car. When she came out the car was gone, stolen. So she walked a mile home with an armful of groceries.”

What do you do to take care of yourself?

“That’s always a challenge with a medical practice. I do try to exercise three days a week, and we take those walks in the state park. I try to read in bed, but I fall asleep pretty quick.”

What did you and Bev feel when you heard the diagnosis?

Our conversation stopped with this question. In fact, I thought we’d been disconnected. But after a long pause, Ed said, “I need to collect myself. Let me email you later.” In essence, Ed wrote that when they got home Bev was crying and more than distraught. Her diagnosis was magnified by the fact that Bev had been the primary caregiver for her grandmother, who died with dementia. And Bev was caring for her mother, also with dementia, until her own diagnosis.

What are the most significant lessons you’ve learned so far as a caregiver?

“Probably being patient, letting Bev know that I love her, and reminding myself that she’s not responsible for her behavior. I continually have to be creative in coping day-to-day, in actively managing situations as they arise. Plus, having to acknowledge that I need help.

Has being a husband-caregiver been of any value to you as a physician?

“It’s certainly made me more empathetic with families that are dealing with these kinds of issues. I understand what they are going through and can give some practical suggestions.”

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Thank you, Ed. I’m sure a number of readers, who may be dealing with this kind of crisis or another, will benefit from what you’re sharing.

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

P.S. I had two recent interviews you may want to check out, or not. First is an audio conversation with the Mockingbird website. Nobody does a better job of exploring, dissecting, and skating through the intersection of pop culture and religion than this group of Gen X’s, Y’s, and Millennials. Click here for our interview.

P.P.S. The second is from a neighborhood newspaper here in St. Pete. Click here for that Northeast Journal conversation.

P.P.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.

A Friend Asks About Our Odyssey Through Alzheimer's

“It took me a long time to ahhh…well, you don’t get into a rhythm with something like Alzheimer’s,” I said after a long pause. “Because as soon as you think you’re making a little progress, or things are stabilized, things can fall right out from under you.”

I was answering a question from my friend Bob Andelman, who was interviewing me for his Mr. Media website. Alzheimer’s can be erratic and fearful, as you may know from personal experience or from reading my blog posts or my book A Path Revealed.  

Bob’s questions revealed fresh insights into our family’s 17-year odyssey, as have other interviews, such as the one last month with the Tampa Bay Times. As you probably know by now, my wife Martha was diagnosed in 1997 with Alzheimer’s at age 50.  

Bob and I go back three decades. (He’s aged well). He freelanced often for our business magazine. In his spare time he authored or co-authored 16 books. He began a Mr. Media syndicated newspaper column in 1994, which eventually morphed into these video podcasts. Bob has interviewed more than 1,200 media figures of one stripe or another. Among his high profile interviewees (in addition to me of course—cough, cough) are Kirk Douglas, Raquel Welch, Billy Bob Thornton, and TV chef Emeril Lagasse. Mr. Media today is uploaded to 30 podcast sites and gets more than 100,000 hits a year.

This Mr. Media interview runs 39 minutes. If you’re like me, you probably don’t have time to listen in one sitting. I’ve therefore time-marked Bob’s questions below so you can go wherever you want to on the video. To listen to my responses, just open to the segment you’re interested in. All comments and questions are Bob’s, unless otherwise noted.

Click the video below to start. (You can skip the opening ad after a couple of seconds.)

The interview:

First 3 minutes…Bob’s introduction and question: “Martha and Carlen and their family were forced to deal with Alzheimer’s for 17 years. But I can’t imagine what you went through as you wrote and rewrote your book. Can you talk about that?”

5:10: How long did Martha live at home?

5:50: What is the average life expectancy for someone with Alzheimer’s? It seems like 17 years is a long time.

9:05: I knew Martha, but for those listening who did not, can you describe her?

15:15: In A Path Revealed, you wrote a very specific story about your experience in dealing with a family member with Alzheimer’s. It’s not a what-to-do book, it’s a spiritual journey…it’s a very religious journey. I’m curious as to what happened from your experience that led you down that path?

20:25…Carlen Maddux: After getting hit with the diagnosis, the one person Martha wanted to tell was Rev. Lacy Harwell, a Presbyterian minister. He was a good friend, he’d married us and baptized two of our children. When Lacy came, he urged us to visit a friend of his in Kentucky, a Catholic nun with the Sisters of Loretto. We did go, and that’s where, in hindsight, this path began to open up.   

Carlen Maddux excerpt: "I was like a sponge. Anything that could help us...I wanted to get Martha out of this. Even though the medical community said they had not been able to find anything (to cure or treat Alzheimer's disease), I still was hopeful we would stumble across something." (22:20)

30:20: I’m thinking one of the major turning points in this whole journey is when you had to make the decision—which I’m sure you agonized over—that it was time for Martha to go into a nursing home.  

34:00: Just to bring things back around full circle, it’s been about three years since Martha passed. You’ve been in journalism and publishing a long time, and you’ve been writing the book the past couple of years. Did it take longer to write and was it harder than you imagined when you started?

35:00: Since Martha was stricken in ’97, your children have been to college and are out. They’re grown and two are married with kids. I think we need to be reminded sometimes that life does go on. You’ve obviously gotten your book out. You’ve got grandchildren now. How are you spending your time these days?

Carlen Maddux excerpt: “Talking about the kids…I would tell you that our three children probably are closer today than they would have been. They really have each other’s back and are sensitive. That’s a great thing to see.” (36:50)

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Thank you for taking the time to check out our interview.
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. An online friend, Carol Bradley Bursack, publishes a daily blog for caregivers working with elder care issues. Her website is Minding Our Elders. You may find her recent post of interest: Driving and Memory Loss: Tips to Help Elders Give Up Driving.

P.P.S. In case you missed this, my publisher Paraclete Press is giving away 3 copies of my book, A Path Revealed, on Goodreads. If interested, click here to sign up. Their offer is good through January 31. If you’re not familiar with Goodreads, you can follow a step-by-step, sign-up procedure by clicking on my post from last September. Email me if you have any questions. Good luck.

P.P.P.S. If you’d like to sign up for my blog, it’s free. Just click here.

Why Being Gentle with Yourself Can Be So Hard

“You’ve learned a lot haven’t you, Carlen, over the 17 years you and Martha and the kids struggled with Alzheimer’s. What difference does it make for you now?”   

That’s me at age 40 talking with me today at age 71. Over the past year I’ve occasionally carried on this kind of conversation. It seems like a good time to have another one as we move into 2017.

Me@71: I did learn a lot, Carlen. But I’m unlearning even more.

Me@40: What do you mean?

Me@71: As I grew into adulthood, for example, I became my toughest critic: “Do the best you can, then do more.” “Push for perfection.” “Don’t give up.” “Lead or be led.” “If you don’t win, you lose.” “Where there’s a will there’s a way.” “God helps those who help themselves.” All my younger life I heard and believed such clichéd slogans, either spoken or implied. They echo still in my mind.      

Me@40: What’s wrong with them? Didn’t they help you to keep our magazine alive for 26 years? To keep our kids trekking into their own adulthood? To protect Martha? To write the book that you have?

Me@71: Yes and no. They could be practical guidelines, within bounds, and they did help in those arenas where I had a semblance of control. But one thing I’ve learned through Alzheimer’s is this: there are many realms of life in which I have no control. And in those areas where I thought I had control, it often is less than I presumed.

    Oil portrait of Martha by
 our lifelong friend Tom Elliott

As Martha and I tried to cope with Alzheimer’s, these emotional drivers often frustrated me. But “frustrate” is the wrong word. I got depressed with my ineptitude in dealing with Alzheimer’s and its symptoms. In my previous life, if I hit some immovable object I would typically find a way around it or over it. It wasn’t always easy, but I usually got past it. Not with Alzheimer’s. Every feint or sidestep or turn, this insidious disease was there, staring me in the face. I could find no way past.

Me@40: How then were you able to survive for 17 years under this kind of pressure?

Me@71: By learning to be gentle with myself. This understanding came slowly, very slowly. This is what I mean when I say I had much to unlearn. It’s at this intersection of my past and our present where I had to let God come into play.  

Me@40: You talk far more about God than I do. I believe in God and believe in praying and reading the Bible and going to church. But why such talk?

Me@71: I guess I do talk more than I did. Some people may think I’ve become a zealot. But that’s not it at all. It was a matter of survival for me to dive deeper into God than I ever had. I learned, not soon enough, that Alzheimer’s was way over my head.

Through much of my life I drove myself hard, even in my younger years. I remember playing ‘Old Maid’ with my family when I was 7 or 8; when I lost, I tore up the Old Maid card and marched to my room in a huff. Yet underneath this compulsion to succeed was an uncertain hollowness. It wasn’t a continuous feeling but it occurred often enough. I usually tried to combat this barrenness by staying busy. But Alzheimer’s exposed the lie in that approach. It and other such crises can destroy the strongest of wills.   

This is where God stepped in. Rather, this is where God came crashing in. By “God” I mean that personal, infinite, universal force that’s far greater than me and my efforts. I guess we’ve got to learn what our limitations are in order to surpass them, and I learned mine.

Me@40: So what have you learned?

Me@71: The operative word is “learning,” not learned. The most radical change for me is my impression of God. I grew up believing God was a distant god, a god of judgment and punishment who passed out mercy if I believed and did the right things. (I suspect that many of us contend with this image of God at some level.) In my childhood church, “God is Love” was occasionally whispered out on the fringes, but I rarely saw that image embraced. And I never felt it.

In caring for Martha, I beat myself up through the early years. I felt guilty, ashamed, anxious, angry, impatient, and frustrated. I felt Martha and I had been stigmatized. At the bottom of it all was an intractable fear. I wanted out, but I didn’t want out—it was my “duty” to care for Martha and our kids. More than a few times I stared at my ego dashed on to the floor, shattered and impotent.  

It was during these lowest moments that I began to permit the God who is Love to flow through me and over me, transforming my cracked ego into a wholeness I’d not felt before. I began to know God as that emotional, mental, physical, creative, spiritual, and merciful Presence who seeks me out, who seeks us all out to embrace us in the most intimate of ways. To experience God in this way is beyond words. In doing so, I began to trust God rather than to believe in Him.

It was out of these transformative moments that I saw Martha, our children, and me lifted out of that ugliness called Alzheimer’s. As I experienced God’s gentleness, I discovered a gentleness within myself—and within Martha. I was learning to criticize less while forgiving myself more, and those around me. With that came a sense of release, a rarely experienced freedom.

I realize now that a “strong” faith is an illusion. To the contrary, I see that a real, practical faith is a receiving faith.

                         My l'il rascals and me

Me@40: So you’ve now gotten past these destructive behaviors?

Me@71: Hardly. My October launch of A Path Revealed has been fun, but on occasion that old obsession of perfectionism has arisen with its many symptoms: fear of failure; self-doubt; worry; fear of rejection; feeling inferior to writers I respect; and too much to do in too little time with all the responsibility falling on my shoulders.

Yet I’m learning, bit by bit, I can do more by pushing myself less and permitting this divine Love, Life, and Spirit to permeate my heart, mind, body, and soul. In doing so, I’m learning to be gentle with myself…as I am with others.

Me@40: Trusting God can be so counter-intuitive, can't it?

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Thanks for listening in on our conversation. As we move into 2017, may we all deepen and enrich our trust in a Presence far, far greater than ourselves.   

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. My publisher Paraclete Press is starting 2017 in a giving mood. They are giving away 3 copies of my book, A Path Revealed, on Goodreads. If you’re interested, click here to sign up. Their offer is good through January 31. If you’re not familiar with Goodreads, you can follow a step-by-step, sign-up procedure by clicking on my post from last September. Email me if you have any questions. Good luck.

P.P.S. In case you missed it, the Tampa Bay Times ran a story last month on our family’s odyssey and my book. The Times has the largest circulation of any paper in the South. You can read the story by clicking here.

P.P.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.

May I Share with You These Entries from My Journal?

Here’s a look inside my journal, written during the holiday season of 1998. In my book A Path Revealed I share a few journal entries, but not these.

I began my journal in September 1997, when my wife Martha was diagnosed with Alzheimer’s. But for almost two months, starting December 2nd, I posted no entries. I don’t remember why, but I have a pretty good idea.

A year later I was not at such a loss of words. What follows are several entries from Thanksgiving 1998 through New Year’s, edited for brevity and clarity…

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 checkup with the doctor. Your love, warmth, and prayers have been an incredible healing force in our fight with Mommie’s Alzheimer’s. Happy Thanksgiving!

Love, Mommie and Daddy
(Martha was able to sign for herself.)

November 24, 1998
(This is the enclosure I sent with the children’s note above.)

We just finished Martha’s 12-month review with her neurologist. Real good news. The doctor says he detects no change in Martha from a year ago, maybe even a slight improvement. Short of marked or full recovery, stabilization was our goal the past year. Persons Martha’s age (51 at the time of this note) generally decline precipitously, according to the doctor. Martha has not. God is good.

What’s the cause of this stabilization?

• Exercise, especially swimming?
• Prayers of Fr. Matthew and Sr. Elaine? (We visited both in Kentucky the year before.)
• Lacy’s prayers? (Rev. Lacy Harwell, our friend and mentor, is the first person we talked with after the diagnosis; he encouraged us to visit Sr. Elaine.)
• Prayers of our friends?
• Our meditation and prayers for Martha’s healing?
• Martha’s continued connections with her friends and activities, such as swimming, tennis, and the church choir?  
• My increased involvement in Martha’s life?
• The vitamin supplements heavy on antioxidants?
• Martha’s positive outlook and faith? Mine?
• The children’s rallying support?
• The doctor and his staff’s warmth and forthrightness?

Maybe some or all of these have contributed to her stabilization. Then maybe there’s something we haven’t even identified. I happen to believe all are contributing factors. Seeking God’s heart can permit a healing atmosphere to develop, within which these activities may have influence. And within which the healing qualities of Martha’s mind and body can emerge.

Thank you, dear God, that your light is protecting and healing Martha. Amen.

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November 30

I also sent the above notes to Father Matthew Kelty of the Abbey of Gethsemani. This is his response: “Dear Friends… Thank you for good news. Nothing heals like trust in a merciful God. Then all will be well. God bless you both.”

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December 9

Good sign. I’m seeing a pattern of initiative by Martha not seen this past year. Working on art at home. Pushing me to visit Santa Fe (where we’d lived for three years, pre-kids). Wants to get with the Episcopal priest who led the healing service we attended Sunday at St. Peter’s Cathedral. Martha really connected with her. My plan—to follow up on these desires as best I can, to let God speak through Martha’s spirit.

The doctor’s assistant was impressed with Martha’s responses to a variety of tests. She says patients usually get worse, not better, relative to these tests.

On the 7th and 8th, I felt this deep confidence that Martha is improving. I haven’t been able to generate such confidence through will power or mental gymnastics. I believe it stems from God, working through Martha’s initiatives and the healing service we attended. Side note: She’s been taking heavy-duty vitamin supplements for 90-120 days, as have I. Can’t hurt.

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December 14

The last few days I’ve felt my emotions and thoughts were log-jammed. Nothing has been able to break them open. I read in Agnes Sanford’s book The Healing Light (a classic in the field) that while God’s energy flows into me, it also must flow out. I need to thank God for his life-giving Spirit rather than always focusing on our problems. In order to grow, I must be willing to give. Easier said than done.

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December 23

We received a Christmas card from Lacy Harwell: “I appreciate your updates. Have you considered keeping a journal of this pilgrimage? It could be of great value to others. As I ponder your notes to me I feel like a student in a post-grad seminar on love and care. Whatever else you are doing, you are instructing me. We hope the gathering of your loves, in this our festival of hope and joy, allows you to hear the Angel’s Song again and echo it with a clear true pitch. Lacy and Margaret.”

December 25
Christmas Day 1998

Praying again for Martha’s healing. I’ve had trouble visualizing God’s light shining from Martha’s mind and body, as Agnes Sanford suggests. Today, however, I connected with an image of oil pouring gently over her head, seeping into the crevices of her brain, healing the fissures and scarred tissue.

Then, through no prompting by me, a white dove appeared in my mind’s eye, resting on Martha’s head. It didn’t move. It flew away. Then it returned, resting again. Suddenly from nowhere, a monster arose from Martha’s head, a dragon of sorts, being lifted upward by the dove. This dragon disappeared into the sky with the dove clutching its head. The image evaporated.

What do I make of this? Is this only my wish and desire? Is this a sign from God? My cocked eye of skepticism tells me not to put much stock in such imaginings. Yet as I recount this on paper, my heart and eyes swell with tears of joy and gratitude. Those tears bear this message: “Trust God.” So I’ll do as Mary did with the birth of her son Jesus—I’ll store this sign and wonder in my heart, and watch for God’s movement.

(This image of the dove is one of the first I experienced in such a deep, clear way. I was so surprised by it at the time that I was reluctant to share it with anyone.)

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December 27-January 2, 1999

We visited David in Jackson Hole, where he’s ski-bumming for the winter. I was holding my breath to see if Martha could still ski. She picked up where she left off four years ago. She stayed on the beginner’s slopes; getting on and off the lift was a bit worrisome. All in all, though, the time there was a real confidence booster, for her and for me.

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I’ll close with a link shared this week by an online friend, Carolyn Bradley Bursack of Minding Our Elders. The link is to the “World’s Largest Virtual #Hallelujah Chorus” >> 300 members of the Mormon Tabernacle Choir combined with 2,000 voices worldwide. (It may be the best four minutes you spend this holiday.)

May this season of Hanukkah and Christmas be a time of wonder and joy for you and for your family.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. The Tampa Bay Times ran a story last week on our family’s odyssey and my book. The Times has the largest circulation of any paper in the South. You can read the story by clicking here.

P.P.S. If you’re interested, you can buy A Path Revealed  several ways: 1) At your local bookstore or at a Barnes & Noble, which can order it if it’s not on the shelf. 2) On Amazon. 3) Via my publisher Paraclete Press, which offers discounts for multiple copies. Contact Sr. Estelle Cole by phone: 774-801-2030 or by email: srestelle@paracletepress.com.

P.P.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.

Five Simple Questions, No Easy Answers

A friend, Nancy Nordenson, asked if I were interested in discussing our odyssey through Alzheimer’s for her blog. Yes, I said, without much thought. She sent me what I  thought, at first, were five simple questions. That was in late September. I read the questions several times before deciding to set them aside. “I’m busy right now with my book launch, so I’ll have to get back to you later on these.” That was the excuse I gave Nancy for not responding immediately.

The fact was I had no quick answers for her questions. I had to digest them for a while before responding with any sense of clarity. Her questions gave me fresh insights into our family’s story. I stand amazed that after writing and rewriting our story, and editing it untold times, I still discover aspects of our journey that I hadn’t realized before.

Here is Nancy’s post from last week…    

A PATH REVEALED: A CONVERSATION WITH CARLEN MADDUX ABOUT FINDING THE WAY THROUGH

by Nancy Nordenson
www.nancynordenson-markings.com

This is a picture of a manuscript that I read nearly a year and a half ago, studded by sticky notes nearly too many to count. These sticky notes aren’t there to mark suggested edits but instead they mark places in the text that took my breath away, or places that taught me something I need and want to remember, or scenes that I simply loved, or confessions that triggered sober witness. Written by Carlen Maddux, a friend from my hometown of St. Petersburg, Florida, this manuscript is now a book that has been recently published by the fabulous Paraclete Press.

A Path Revealed: How Hope, Love and Joy Found Us Deep in a Maze Called Alzheimer's is the story of Carlen and Martha Maddux in the years that followed Martha’s diagnosis of Alzheimer’s disease at the age of 50. Martha was a public figure in St. Pete, serving for years on the city council, managing multiple local and state political campaigns, and running herself for the Florida State Legislature.

Carlen, a journalist, takes the reader along his and his wife's path, and while their path is one through Alzheimer’s, the practical wisdom that emerges in their story can be overlaid on any crisis. The practical wisdom is applicable to life in general. Who among hasn’t faced circumstances that we wish were different than they are?

In A Path Revealed, Carlen learns what it means to take God seriously and personally. He learns what it is to lead, particularly to lead a family. He models what it's like to truly love your spouse. Self-help books in which the author has figured out 10 steps to living with [fill in the blank] and proceeds to teach in didactic fashion pale in comparison to this wise and personal journey hard-lived on every page.

Recently, I asked Carlen a few questions about the book, the writing of it, and the path through crisis, and he graciously responded.

This is your first book – why did you decide to write your story for a broad audience?

CM: While trying to develop my story line, I found two strong themes running along parallel rails: 1) Alzheimer’s and its potential for destroying a family; 2) The spiritual odyssey that emerged. I struggled trying to decide which was the organizing theme. Early on, I tapped a couple dozen readers for feedback; half of them didn’t know us.  Each one of them told me that the focus of my story was this spiritual journey. Alzheimer’s was the context, they said. Developing this then as a spiritual odyssey moving through a life-threatening crisis immediately moved our story into an audience broader than one strictly focused on dementia. A clinical psychologist, who was one of my early readers, put it this way on the front cover: “This book belongs on the nightstand of every family coping with a crisis.”

In the book you wrote that your reporter instinct kicked in after Martha's diagnosis, driving you to try to figure out whether there was any way out of Alzheimer's. As you came to realize there was no way out of that particular diagnosis, what primary question, or questions, took that initial question's place?

CM: It was the most primeval of questions: HELP?!

How was journaling during this time instrumental in helping you find the way through this maze?

CM: I started a journal almost from the day Martha was diagnosed with Alzheimer’s. She was 50 at the time; I was 52. I didn’t begin writing a journal for “spiritual discipline” purposes. I did it to survive. I had so much information coming at me, and so many questions stirring up inside, that I needed a central clearinghouse. The idea of a journal instinctively arose. I’m glad it did. Soon enough, my thoughts and writings evolved into issues deriving from this spiritual odyssey. I wrote in this journal for a decade, consuming 14 volumes. My last entry was the day my wife moved into her nursing home.

How did the act of writing the book – even before you had a plan to publish it with Paraclete – help you achieve the wholeness that you referred to in the book's Prologue?

CM: Writing my book almost didn’t happen. The raw material for the book lay in the journal I’d kept, and I initially found it too difficult to open after having closed it five years earlier. Somehow I got past that grinding feeling. As I read and scanned the 14 volumes in no particular order, story fragments began linking together. Not only that, memories of conversations and images were awakened that I’d not written down, helping me to add color and texture to our story. Fourteen years into our journey—about the time I started to write my book—I suddenly realized how far our family had traveled, and from where we’d come.

I open my book’s Epilogue this way: “Only recently has the meaning of my walk with Martha at Gethsemani come clear to me, carved out like a statue in relief by the intervening years.” (A month after her diagnosis, Martha and I visited the Abbey of Gethsemani in Kentucky and climbed up through a wooded hill.) I continue: “Our family has stepped over jutting rocks and tangled roots and moved through a wooded darkness speckled with light. We have stumbled onto sunlit clearings and paused at the wonder of it all, lingering with delight before turning back to the path set before us. Yes, ours has been a maddening and frustrating journey, disheartening even. Yet somehow this walk—our walk—has followed a sacred path, pointing our way toward a Presence far greater and more real than any entrapment by a disease.”

How does the path through your crisis help people who find themselves in their own crisis, whether or not it is related to Alzheimer's?

CM: That’s a question best left to my readers. Based on the feedback I’ve received, though, our odyssey has so many twists and turns, dead ends and fitful starts, and yet a hope and joy emerging from this milieu, that the story seems to connect at levels that are unique to a reader’s particular crisis. How that happens, I’m not really sure. I do know that they feel a certain authenticity with the pain, suffering, and confusion I share, and thus an authenticity with the hope, love, and joy that arose.

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

Nancy (Erickson) Nordenson is by day a medical writer. By night, she’s an essayist and writer who explores the creative and spiritual realms of her life and environs.  Her recent book is Finding Livelihood: A Progress of Work and Leisure. I shared some of Nancy’s story last March in a post titled How a Friend Found Meaning in a Job Loss. Nancy and her husband call Minneapolis home.

May we all take a deep breath to rest in this holiday season’s Spirit.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. If you think our story is worth sharing, please think about giving my book, A Path Revealed, to family and friends who would 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 can order it if it’s not on the shelf. 2) On Amazon. 3) Via my publisher Paraclete Press, which offers discounts for multiple copies. Contact Sr. Estelle Cole by phone: 774-801-2030 or by email: srestelle@paracletepress.com.

P.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.

A Thanksgiving Memory Redux

This post is a repeat from last Thanksgiving, which evoked a healthy response from our readers. Why a repeat, you ask? Well, we have nearly twice the number of subscribers than we did then. Moreover, one friend told me that this poem became the blessing his family offered over their Thanksgiving meal. Besides, if Garrison Keillor could rerun favorite episodes of “Prairie Home Companion,” I can do the same.

To help prepare your mind, this verse is not a quick read-through and then on to the next item on your list. Set aside a place and time where it can sink in. I hope you enjoy it as much as I do…   

A Thanksgiving Memory
(November 25, 2015)

I tried to recall a short, meaningful Thanksgiving poem for this week. But none came to mind that hadn’t by now morphed into a cliché.

Then I remembered a poem I reflected on often during my early 40’s—Pied Beauty. I read it scores of times, aloud and slowly. But I hadn’t picked it up since then, and I didn’t think of this as a “Thanksgiving” poem … until now.   

I was drawn to Pied Beauty (still am) because it celebrates the beauty of that which is less than “perfect.” It reflects the beauty of that which lasts, unlike all the shiny toys dancing before our eyes.

So with a reverse twist I, at 70, thank Carlen at 40 for reminding me of this verse of praise by Gerard Manley Hopkins.

                 Gerard Manley Hopkins
        Poet & Jesuit priest (1844-1889)**      

Published in 1877, this short verse is crafted for us to drink deeply as we whisper its words aloud. We don’t have to be a poet, or even a lover of poetry, to let these images of grace dance through the imperfections of our own lives.

PIED BEAUTY
by Gerard Manley Hopkins

Glory be to God for dappled things—
For skies of couple-colour as a brinded(1) cow;
For rose-moles all in stipple(2) upon trout that swim;
Fresh-firecoal chestnut-falls(3); finches’ wings;
Landscape plotted and pieced—fold, fallow, and plough;
And all trades, their gear and tackle and trim.
All things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; a-dazzle, dim;
He fathers-forth whose beauty is past change:
Praise him.

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

(1)Streaked or spotted; (2)Rose-colored dots or flecks; (3)Fallen chestnuts as red as burning coals.
Source: Gerard Manley Hopkins: Poems and Prose (Penguin Classics, 1985)
**Photographed by George Giberne, printed by Hills and Saunders. Photograph: National Portrait Gallery.

If interested, here’s a 45-second audio of Pied Beauty.

Enjoy your Thanksgiving season.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS. Thanksgiving is here and Christmas is around the corner. If you think our story is worth sharing, you may want to give my book, A Path Revealed, to family and friends who would 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 can order it if it’s not on the shelf. 2) On Amazon. 3) Via my publisher Paraclete Press, which offers discounts for multiple copies. Contact Sr. Estelle Cole by phone: 774-801-2030 or by email: srestelle@paracletepress.com.

PPS. Congratulations to Carolyn O. for winning the book drawing from the last post. She’s receiving Frena Gray-Davidson’s “Alzheimer’s Disease Frequently Asked Questions.”

PPPS. 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.

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?

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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.