Irma, Alzheimer's, Martha and Me

My nerves are finally settling down. Hurricane Irma did more than disrupt my life and my family’s here in the Tampa Bay area. It struck deep into my psyche. And I was not alone. The anxiety on the streets was palpable as people dashed helter-skelter from one place to the next looking for gas, supplies, water, and food. All the while we were hoping for some plan of protection or escape, no matter how makeshift.

My wife Martha and I moved to St. Petersburg in 1975 and over the years we rode out a number of hurricanes, none of which was a direct hit on the area. But Irma was different. It was a massive tiger clawing its way through the Caribbean, chewing up everything in its path. And I could see in its eye the reflected image of my house and my children’s homes. I boarded up my townhome, but that quickly felt like a house of cards. We searched for a shelter but scratched that idea. Let’s get out of here! So my daughter’s family and I trekked six hours to Jacksonville, camping out in a motel there. It, too, was under a hurricane warning, but the eye wasn’t coming that way.

I haven’t felt such raw anxiety since Martha was diagnosed with Alzheimer’s. That was twenty years ago this week, on September 23rd, 1997. She’d just turned fifty.

Click here to see the video of Hurricane Irma move through Florida from the morning of September 8 through the morning of September 10. The footage was captured by the NOAA’s GOES East satellite. Photo/video credit: NASA-NOAA GOES Project.

Click here to see the video of Hurricane Irma move through Florida from the morning of September 8 through the morning of September 10. The footage was captured by the NOAA’s GOES East satellite. Photo/video credit: NASA-NOAA GOES Project.

As I reflect on this “20th anniversary” and the feelings that echo between then and today, I wonder, “Haven’t you learned anything, Carlen?” I guess that’s a major lesson from my time as Martha’s caregiver, for I used to think that “once learned, always learned.” But that’s not been the case for me. Irma clearly shows me that I still struggle with issues that I thought I’d figured out and filed away.

For example, I remember when it dawned on me that there’s a vast difference between believing in God and in believing God.

Alzheimer’s or any crisis, such as Hurricane Irma, is no respecter of persons or religious beliefs, whether you are Buddhist, Jewish, Muslim, Christian, Hindu, agnostic, or atheist. For when a life-altering crisis slams you to the wall, trying to cope with it and make sense of it through systems of belief—such as religious theologies, secular philosophies, or scientific theories—is useless. At least it is for me. This kind of crisis willfully and with abandon attacks you heart, mind, body, and soul.  

Twenty years ago, as Martha and I grappled with the prospect of a future worse than bleak, I was forced to trust something beyond my own resources, beyond my emotional, intellectual, and physical capabilities. Otherwise I would have collapsed.  I suspect most of us who struggle with a serious crisis must discover for ourselves what that “something” is, regardless of background or belief. For me, that something is God. It’s that Creator who transcends my comprehension and whose intimacy flows more deeply, more broadly, and more gently than I’d ever imagined.

So what did it mean for me to believe God in the midst of our Alzheimer’s crisis? I know what I didn’t believe. I didn’t believe that God loved us. How could I, after being so stigmatized by this devastating news? Truth be told, all my life I hadn’t believed I was loved by an all-knowing, all-seeing, all-judging God. Yes, I believed in God and I said a thousand times and more that God loves me “for the Bible tells me so.” But that had gone no further than my lips, until…

…Until some voice, some force beyond me, kept whispering in my ear, kept stirring my heart and mind, kept raising mentors along the way until I knew that I am loved, that despite all else Martha and our children are loved. God’s intimacy searched out the darkest realms of my heart and mind, healing the pain with its gentle touch.

That’s what it means for me to believe God. To know that I am loved, regardless of my circumstance or my state of mind. To trust God fully is often still difficult, but the mere act of wanting to believe, of trying to believe, of seeking to believe has proved invaluable. It’s not unlike my boring football practices long ago that eventually paid off in some future game.          

     Martha and me at a staff Christmas party

     Martha and me at a staff Christmas party

Much of what I continue to learn I’ve already shared through these blog posts and in my book, but this “20th anniversary” seems to be a good time for a quick look back. Here are some other thoughts in no particular order…

>> My No. 1 rule for caregivers: If you’re going to take good care of a loved one, then you must learn to take good care of yourself. Sounds simple but it isn’t. To also take care of yourself doesn’t have to mean that you’re taking less care of your loved one. This doesn’t have to be a zero-sum game. In fact, the more I took care of myself, my thinking was clearer and my burnout was less, and I was better able to care for Martha. I didn’t understand this for a long while.

This requires help from family and friends, which I was reluctant to ask for at first. You may remember that Rachel and David offered to stay with their mother one weekend a month. That was the best gift I received, which I usually spent at nearby St. Leo Abbey. (By my quick calculation I spent over 300 nights in one monastery or another during the first decade living with this insidious disease.)

>> Talking about our children, I feel much closer with David, Rachel, and Kathryn today than I may have otherwise, had we not gone through this crisis together. As for their feelings, I’ll let them speak for themselves. (At the time of Martha’s diagnosis, Kathryn was still in high school while the other two were in college.) Early on, I began giving them copies of my journal notes to let them know what I was thinking and feeling and where I was heading. (Rachel today says she was sure I was going to become a monk. LOL.) We talked fairly frequently, allowing each other to vent. Not that I would wish such a crisis on anyone, for there’s got to be an easier way to keep the family close.

>> Each of us needs a community of support during a crisis, whether we realize it or not. My first full day back in St. Pete after Hurricane Irma passed, on Tuesday September 12th, I had a vague feeling of needing something.  So I went looking. I wanted to read the morning paper over a cup of coffee surrounded by people, whether I knew them or not. Kahwa’s coffee shop in our neighborhood was overflowing with no place to sit, so I drove up Fourth Street but every place I passed was closed—McDonald’s, Starbucks, Burger King, Krispy Kreme, Chick-fil-A, Wendy’s, Dunkin’ Donuts. After driving a few miles I found an Einstein bagel shop open.

Finally, I found a community of people relaxing, talking, and occasionally laughing. I didn’t know a soul there, yet I knew everyone. God is here in the newbie clerk focusing on her cash register; in the mother and daughter over at the corner table; in my first bite of bagel and cream cheese; in the staff fixing sandwiches with the precision of a surgeon; in the threesome huddling over a late breakfast; in the coffee black and hot.

Leaving, I said, “Thank you for being open,” to no one in particular behind the counter. The world stopped briefly as every clerk and cook looked up and smiled at the same time. We all knew. We all were grateful. We all were given one more day of normalcy.

>> Knowing what I know now, I would ask a couple of Martha’s good friends to help organize a schedule by which a network of her friends would take her places and be with her on a week-in, week-out basis. Her friends did do this, but it was more random and occasional than structured and organized. Only through our sister-in-law KK’s insistence did Martha get involved in an art class, an opportunity to which I’d been blind.  

I would share this with any primary caregiver: “Don’t be shy about calling on your family and friends.” They often want to help but don’t know how. And they can be just as responsible and protective as you, maybe even more so than a “tired-and-worn-out you.”

>> All my life I’d thought that illnesses and diseases were physical issues to be dealt with as such. And I suspect I’m not alone in this thinking. But I soon discovered with Alzheimer’s, as I now think with any serious crisis, that there are embedded emotional, psychological, and spiritual issues that need to be recognized and resolved as best we can if we want to have any kind of healing. One example: Our learning of the absolute need to forgive. Why? Because when we continue to carry resentment, resentment carries the seed of our own destruction.

Family Collage2.jpg

>> One of the best pieces of advice I heard early on was, “Carlen, be gentle on yourself.” Caring for my wife with dementia was beyond frustrating. I wanted solutions, not this escalating set of problems. And when I couldn’t resolve some issue, I often felt guilty. More than a few times I wanted out of this role as Martha’s caregiver. Indeed, I may have walked away had I not been reminded of this advice over and again: “Be gentle on yourself, Carlen, be gentle.”

>> Learning to be quiet with Martha was difficult initially, but worth the investment of time, energy, and thought. You may remember, we often sat side by side, holding hands as we meditated for 20 minutes or so in the morning and in the evening. Over time, I could feel Martha’s agitation and anxiety diminish to where she seemed to be in a safe place. And as she was, I was. An unexpected gift was the intimacy that wove its way through us both, to the point that on occasion I could sense what she was feeling and thinking.

>> I’ve been asked why I revealed so much about the issues internal to Martha’s family and mine. I’m not sure other than I’ve decided that every family is dysfunctional; it just depends on the degree. I felt that by sharing some of our embedded issues and the ways we dealt with them, or not, it might help others do so within their families. To clear the air, so to speak.

>> Stop! Look! Listen! I heard this advice in the first grade when taught how to cross a street. It’s also good advice to heed when deep in a crisis. I slowly learned to pay attention to what’s going on with Martha. To not impose my agenda; to try to put myself in her shoes; to slow down. I also learned, although more slowly, to pay attention to what’s going on within me, to not beat myself up, to know that I am loved.

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I’m going back on the road next month. If you’re in the Nashville area on these dates, or in my hometown of Cookeville, I’d love to see you:

Sunday, October 15, 9:30am-10:45…I’ll be sharing our story with the Wesley Forum Sunday School group (Room 391) at Brentwood United Methodist Church, 305 Franklin Road, Brentwood, TN.

Monday, October 16, 11:30am-1:00pm…A lunch program will be drawing together various Alzheimer’s-related groups to hear and discuss our story. It also will be at Brentwood United Methodist, which is making available a free box lunch. If interested, please email Karen Stevens and she will be glad to send you more information on registering.

Sunday, October 22, 9:45am-10:45…For some reason, my grandfather’s Sunday School class of old has asked me to come back. Maybe they’re hoping I’ll get my story right this time. After all, with a name like ‘The Backsliders’ the class is a forgiving group. They are at First United Methodist Church in Cookeville, TN, 165 E. Broad Street.

Thank you,

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.P.S. My book was published a year ago next week. A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be found on Amazon or ordered from any bookstore.

A Path Revealed.jpg

Love Means Having to Say Goodbye

It all began in grade school in the tiny northern town of Warroad, MN, when Bob wrote Peg a note: “If you’ll be my girlfriend, I’ll be your boyfriend.” She just smiled when she read it, says Bob, two years her elder.

Years later Bob and Peg Green married as he began a 21-year naval career traveling the world. His last port was St. Petersburg, FL, where he served two years as the commanding officer of the Naval Reserve Center before retiring in 1979 with the rank of Commander. Between ports, Bob and Peg found time to rear two daughters and two sons (twins): Trisha, David, Brian, and Sara.    

“It was scary at first,” Peg told a group of friends several years ago, “especially when Bob was at sea for months at a time. We were given a destination and had to follow, not knowing how difficult the challenge, how frightening the road, how tough the assignment.”

                       Peg and Bob Green, February 2009

                       Peg and Bob Green, February 2009

Both Peg and Bob thought retirement would bring more stability, but his second career with a defense contractor was “even more challenging,” Peg told those friends gathered at her church. Ever-changing assignments over 17 years sent him (and occasionally her) to Saudi Arabia, California, the Arctic, Montreal, wherever. While their youngest was still in high school, “I stayed behind (in St. Petersburg) and coped with the promise of a great reward at the end of it all.”

After his second retirement, says Bob, “We had ten years to travel everywhere together. Both of us are of Scandinavian descent so we decided to rent a house for six weeks in Norway.”

But things changed in April 2009. A simple blood test during a medical check-up showed Peg had Type 2 diabetes. But that accelerated to the point that she had to take four insulin shots a day. The doctors quickly discovered that the root problem was pancreatic cancer.

Peg, Bob, and their four children were huddled in the doctor’s office when they received the news: Stage 4 cancer. “I was in disbelief,” he says.

“Peg looked at each of us and said, ‘We are NOT going to use that term again: Stage 4.’ And we didn’t,” he says. “Whenever she was asked how she was doing, Peg always responded, ‘I’m fine.’”

Peg began a routine of chemotherapy of three weeks on and one week of rest. “We traveled every chance we could during that week off,” says Bob.

Two months after her diagnosis, Peg was sharing her thoughts with friends at their church, St. Thomas Episcopal in St. Petersburg. “One big reason I’m here,” she told them, “is that I’ve learned the wonderful benefits of sharing one’s story. I hope I can encourage you to do your own sharing. At least for me, the outpouring of love and concern I’ve witnessed has been tremendously strengthening and calming.”

“Needless to say,” she continued, “we’ve had a roller coaster of emotions…Yet throughout it all I wondered why I haven’t felt panic or despair. The first thing is that I have chosen to believe in the simple assurance of God’s promise…I’ve also had a sudden revelation that God has been preparing me for these uncharted waters for many years” as she recounted their family’s challenges arising from Bob’s duty assignments, first with the Navy and later with the defense contractor.  

“Just having the assurance that so many are praying for me has touched me immeasurably…It certainly strengthens my belief in the power of prayer and even that some healing can come just from sharing.” Bob says they were aware of groups praying from Norway to Brazil and points in between.

Peg, an accomplished pianist and organist, closed her remarks that day by asking Bob to sing a Lutheran hymn—“Healer of Our Every Ill”—as she accompanied him. 

In September 2009, they decided to visit FDR’s summer home in New Brunswick, on Campobello Island. “It was the longest trip we’d taken during this time,” he says. “We got there on the day of our 53rd anniversary, September 1. Ten days later Peg was gone—on 9/11. We’d just crossed the border back into Maine.” It was five months after her diagnosis; Peg was 72 years old.

Reflecting back on this time, Bob says, “I guess I was in denial during these five months. Somehow, I thought I was going to make Peg well; I was always within shouting distance of her.”

Peg’s loss “knocked the wind out of my sails,” Bob recounts today. “I didn’t know what to do, so I found a friend in a bottle of vodka. I didn’t want people to know how much I was drinking, so I became a closet drinker, adding more and more liquor each day.”

Months later his son David invited Bob to an Alcoholics Anonymous (AA) meeting in Hunstville, AL. Afterwards, Bob says, “I went to my car, pulled out my vodka and dumped it out in front of David. I’ve been sober ever since.” That was August 10, 2010. His recovery from alcoholism took several paths through AA-type groups at the VA and at a couple of churches in St. Petersburg.

Green siblings (l. to r.) David, Trisha, Brian, and Sara

Green siblings (l. to r.) David, Trisha, Brian, and Sara

Bob’s primary AA group today is in Minneapolis, where he moved three years ago to be with his new partner, Debbie. There must be something about the women of Hockeytown USA, the nickname for Warroad (pop. 1,700), for that’s where Debbie also grew up, seventeen years Bob’s junior. Interestingly, Bob’s mother was the third-grade teacher for all three—Bob, Peg, and Debbie.

I asked Bob what he might have learned through their intense, short-lived crisis. “I learned how much I really loved Peg and how thankful I was she’d been a part of my life for so long. She was the perfect Navy wife. I also learned how thankful I am for our four children and for their support through this time—their support for Peg, for me, and for each other.”

Thinking further, he adds that it’s important to listen, share, and support others who are going through a crisis of their own, whether cancer or something else. It feels good, he intimates, to know that others have your back when necessary.

Regarding pancreatic cancer, he emphasized that it’s crucial to catch it as early as possible. “There’s still very little that doctors can do since it moves so fast.”

Finally, Bob encourages those caught up in a crisis to get involved with activities supporting that crisis, such as fund-raisers. His son Brian, for example, helped organize the Tampa Bay Purple Stride walk for pancreatic cancer, raising approximately $400,000 over three years.

Bob’s last word: “Think about the opportunity to give generously.”           

Thank you, Bob, for being willing to share your story and Peg’s. Many readers, I’m sure, will find it poignant and meaningful.

(Bob Green is among the handful of readers who raised their hands when I put out an inquiry several months ago looking for anyone willing to share their family’s story. If you would like to, please email me at carlen@carlenmaddux.com.)

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Congratulations to Ranay for winning my last post’s drawing for The Book of Joy by Archbishop Desmond Tutu and the Dalai Lama. It apparently caught the eye of many for we had a record number of entries for this giveaway. It’s worth buying.

On another note, I’m sure all have learned of Glen Campbell’s passing after suffering several years from Alzheimer’s. Campbell was a favorite of mine, but I’d forgotten just how good he was on the guitar. You might enjoy his fun rendition of the William Tell Overture.  

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

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.P.S. My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon or ordered from any bookstore. Clinical psychologist Dr. Landy Anderton says: “This book belongs on the nightstand of every family coping with a crisis.”

A Buddhist, a Christian, and a Jew Go to a Birthday Party

“I remember when we were in Seattle,” says the Christian. “There were seventy thousand people who wanted to come hear this man, and he can’t even speak English properly.”

The Buddhist let out a big belly laugh.

“It’s really not nice,” the Christian continues. “You really need to pray that I become a little more popular like you.”

And so Archbishop Desmond Tutu, talking to the Dalai Lama, opens one of the most delightful and profound books I’ve read. The Book of Joy: Lasting Happiness in a Changing World reveals a week’s visit of face-to-face conversations between the two Nobel Peace Prize laureates. The retired Anglican priest flew thousands of miles to celebrate the Dalai Lama’s 80th birthday in his adopted home of Dharamsala, India; he was exiled from Tibet in 1959.

The two, who consider each other “his mischievous spiritual brother,” collaborate with editor and writer Douglas Abrams, who’s worked with a number of spiritual teachers and scientific pioneers and who describes himself as both “secular” and “a Jew.”

“From the beginning,” Abrams says, “this book was designed as a three-layer birthday cake.” The first layer: The teachings of the Dalai Lama and Archbishop Tutu on joy. The second layer: The latest science on joy and all the other qualities believed essential for enduring happiness. The third layer: The stories of being in Dharamsala with these two icons throughout this week.

Abrams continues: “For all the joy they felt being together, it was an unprecedented and no doubt uncertain experience to meet for a week in Dharamsala. They had met only a half dozen times before, and these were largely brief and formal occasions.”

                Celebrating at the Dalai Lama's 80th birthday party

                Celebrating at the Dalai Lama's 80th birthday party

The Book of Joy is divided into three parts: Day 1—The Nature of True Joy; Days 2&3—The Obstacles to Joy; Days 4&5—The Eight Pillars of Joy.

Close friends (“very close,” the Dalai Lama says), the two spiritual masters compare notes on such issues as beauty and suffering; fear, stress, and anxiety; loneliness and despair; frustration and anger; perspective and humility; humor, forgiveness and gratitude; compassion and generosity.

I was made aware of this book by a good friend from elementary and high school days. Though I might have come across it eventually, I’m grateful she gave me the heads up when she did.

On occasion, I’ll give a book away for free. This is one of those occasions. I’ll get into the rules of that later.

This book is no academic dialogue. You see, hear, and feel tears and hugs, joking and teasing, prayer and meditation, and deep insights into life’s most perplexing issues. And there’s little or no discussion of “religious theologies.” Yet a pure, clear stream of mature spiritual experience flows through from front cover to back. This book reveals the ebb and flow of eighteen decades of hard-won, sometimes tragic lessons pressed into one week’s singular encounter.

Abrams writes: “During the week their fingers were often wagging at each other teasingly, moments before their hands were clasped together affectionately. During our first lunch the Archbishop told the story of a talk they were giving together. As they were getting ready to walk on stage, the Dalai Lama—the world's icon of compassion and peace—pretended to choke his spiritual older brother. The Archbishop turned to the Dalai Lama and said, ‘Hey, the cameras are on us, act like a holy man.’”

Frankly, I don’t know how to review this book. Maybe the best way is to share some of their quotes and insights on a random basis and let you be the judge…

On unhappiness: The Dalai Lama says so much of our unhappiness originates within our own mind and heart—in how we react to the events in our life. “Mental immunity is just learning to avoid the destructive emotions and to develop the positive ones. First, we must understand the mind—the diverse thoughts and emotions we experience on a daily basis. Some of these thoughts and emotions are harmful, even toxic, while others are healthy and healing. The former disturb our mind and cause much mental pain. The latter bring us true joyfulness.”

On fear: The Archbishop was asked how he managed fear during the dark days of apartheid, when he received frequent death threats. “Well, one did not do silly things like stand in front of a lit window at night,” he says, “but one had to say to God, ‘If I’m doing your work, you better jolly well protect me.’”

On anger: Underlying anger, according to the Dalai Lama, is a fear that we will not get what we need, that we are not loved, that we are not respected, that we will not be included. “Now medical scientists say that constant fear, constant anger, constant hatred harms our immune system.”  

On hope vs. optimism: “I say to people I’m not an optimist, because that is something that depends on feelings more than the actual reality,” says Archbishop Tutu. “We feel optimistic, or we feel pessimistic. Now, hope is different in that it is based not on the ephemerality of feelings but on the firm ground of conviction. I believe with a steadfast faith that there can never be a situation that is utterly, totally hopeless. Hope is deeper and very, very close to unshakable. It’s in the pit of your tummy. It’s not in your head. It’s all here,” he says, pointing to his abdomen.

On despair: “Sadness and grief are, of course, natural human responses to loss,” says the Dalai Lama, “but if your focus remains on the loved one you have just lost the experience is less likely to lead to despair. In contrast, if your focus while grieving remains mostly on yourself—‘What am I going to do now? How can I cope?’—then there is a greater danger of going down the path of despair and depression.”

On humor and laughter: “It is much better when there’s not too much seriousness,” says the Dalai Lama. “Laughter, joking is much better. Then we can be completely relaxed. I met some scientists in Japan, and they explained that wholehearted laughter—not artificial laughter—is very good for your heart and your health in general. (People who laugh) are less likely to have a heart attack than those people who are really serious and who have difficulty connecting with other people. Those serious people are in real danger.”

Adds Abrams: “Having worked with many spiritual leaders, I’m tempted to see laughter and a sense of humor as a universal index of spiritual development. The Archbishop and the Dalai Lama were certainly at the top of that index, and they skewered humbug, status, injustice, and evil, all with the power of humor.”

On loneliness vs. being alone: The Dalai Lama turned to the Archbishop to see if he wanted to answer. “No, I’ve not been a monk, man. You start.” So the Dalai Lama jumps in: “Much depends on your attitude. If you are filled with negative judgment and anger, then you will feel separate from other people. You will feel lonely. But if you have an open heart and are filled with trust and friendship, even if you are physically alone, even living a hermit’s life, you will never feel lonely…When someone is warmhearted, they are always completely relaxed. If you live with fear and consider yourself as something special, then automatically, emotionally, you are distanced from others.” He adds for emphasis: “…fear and distrust come from too much focus on yourself.”   

On suffering and adversity: The Archbishop was asked: So how did Nelson Mandela survive twenty-seven years of impoverishment and imprisonment and emerge as someone of immense magnanimity? Why do you think he was able to see his suffering as ennobling rather than embittering?

“He didn’t see it. It happened,” says the Archbishop, who earlier explained that suffering can either embitter us or ennoble us and that the difference lies in whether we are able to find meaning in our suffering. “It seems almost without fail that generosity of spirit requires that we will have experienced, if not suffering then at least frustrations…It is probably something like your muscle. If you want a good muscle tone, you work against it, offering it resistance, and it will grow. You can’t expand the volume of your chest just by sitting. You have to walk up mountains.”

This should be enough to give you a taste of The Book of Joy. I’ve read it once, and I suspect I’ll read it and refer to it scores of times more.

If you’d like to put your name into the hat for this book’s free giveaway, here’s what you do:

  • Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, August 3, and next Wednesday, August 9, by 11:59 PM EST. Indicate that you would like to be included in this month’s book giveaway and put in the subject line: BOOK GIVEAWAY.
  • One person will be selected at random from those entering. I’ll send you a congratulatory email on Thursday, August 10. 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.

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A quick update on the progress of my book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, which was released October of last year. We hit something of a milestone on my Amazon page: Two weeks ago the number of reader reviews hit 100. As of this writing, the reviews stand at 110. If interested, our book can be found on Amazon (print or Kindle) or ordered through any bookstore worldwide.

Thank you for your many responses on Amazon and personally.

Carlen
www.carlenmaddux.com
carlenmaddux@maddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

Eight Ways You Can Help a Friend Trapped by Alzheimer's

It’s been a busy nine months since my book came out last fall. I’ve shared our story with several dozen publications, groups, online sites, and radio and TV programs. And more are being lined up for this summer and fall.

I’ve been asked a variety of questions at these events, but there’s one unspoken question that seems to be at the heart of many of these: “My friend’s family is struggling with Alzheimer’s. What can I do?”

Trying to help a friend in such a crisis can be tricky. We don’t want to interfere, but we also want our friend and family to know we care and stand ready to help.

You’ve probably seen the following tips in one form or another in my blog posts and in my book A Path Revealed. But I thought it helpful to gather them into one post for your quick review. I’ve also developed a flyer to pass out at speaking engagements.     

1)  Stop! Look! Listen! I was taught this in the first grade, but I doubt I learned anything then. This probably is the most important thing you can do. Don’t try to impose an agenda. Take cues from your friend. Pay attention.

2) If your friend is the caregiver, encourage them to take care of themselves. Are they getting help so they can take breaks? I learned the hard way the No. 1 Rule for Caregivers: If you want to take good care of your loved one, then you also must learn to take good care of yourself.

3) Can you organize a schedule in which friends of your friend commit to a time each week to be with the loved one…run errands with them, visit a museum, go to a movie, etc.? As a caregiver, I didn’t recognize this need for a long while. Only after our sister-in-law KK intervened and joined my wife Martha in a painting class did I realize this need. KK also helped me vet daytime aides when I couldn’t leave Martha alone anymore.

         Martha's Piano Man

         Martha's Piano Man

4) Would it be appropriate for you to talk with and support their children? One of my greatest gifts came when two of our children offered me a weekend a month off, which I usually spent in a nearby monastery

5) Emotional, psychological, and spiritual issues are embedded in virtually every crisis, including Alzheimer’s. These need to be recognized and resolved as best we can if we hope to have any kind of healing. Issues such as fear, guilt, stigma, confusion, bitterness, anxiety, alienation, anger, depression … and I could go on and on.

In a mature and sensitive way encourage your friend to address such issues. BUT DO NOT FORCE the issue. A possible approach: Share your own vulnerabilities, such as your fears and anger and embarrassments and what helped you to resolve them.

6) No one has all the answers to a crisis like Alzheimer’s. But your best role may be as a friend and possible resource person. Help connect your friend—IF he or she indicates the need—with a good therapist counselor, or a mature, practical, spiritual director. Martha and I were more than fortunate that mentors—either in person or via books and tapes—arose with our changing needs: Rev. Lacy Harwell, Sr. Elaine Prevallet, Sundar Singh, Fr. John Main, Fr. Matthew Kelty, the Zahls, Canon Jim Glennon, and more.

7) If the person disabled by Alzheimer’s is unable to communicate verbally, my experience has been that there still is a deep undercurrent of non-verbal communication. A silent, intimate communion. You obviously don’t have the emotional connection that a spouse, parent, or child does. So encourage your friend to sit quietly with their loved one, hold hands, and silently pray and meditate.

But also, if you visit your friend who’s disabled, don’t think you need to carry on a one-way conversation. Instead think about quietly sitting beside their chair or bed while silently praying and meditating.

8) First, last, and always…Stop! Look! Listen!

These are a few lessons that 17 years of hard-won experience taught me. I hope there’s some value here for you. I suspect these, with some adjustments, could be applied to other crises as well, health or otherwise.

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

I shared Bob and Kaki Beckett’s story in the last post—Are You Going to Love Me Forever and Ever? After it came out, Bob sent a tip that’s worth passing forward: “Over the last few days I’ve thought about what we do consistently, and I would suggest filling the house with music. Last year I bought an Amazon TAP (portable Bluetooth speaker), hooked it up to our network, and we play music just about every day. Today I played James Taylor for six hours and then switched to some classical music from our CD albums. Music is most relaxing and enjoyable for Kaki. For me, too.”

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

The next two weeks I’ll be sharing our story with a couple of groups. If you’re in the vicinity, feel free to join us. I’d love to see you.

  • This Sunday, July 16, 10am… The Reserve Worship service. Sunset, SC, north of Clemson and west of Spartanburg. Reserve Worship describes itself as “a multi-denominational gathering.” I was invited by my friend Pamela Smith; we’ve known each other longer than we care to remember, having gone through elementary and high school together.
  • Tuesday, July 25, 7-8pm… Montreat Conference Center. (near Black Mountain, NC, about 15 miles east of Asheville.) I’ll be talking at a Summer Lecture Series, in the Lower Left Bank building. Our children David, Rachel, and Kathryn will be here with their families. My wife Martha grew up in Montreat in the summers, often calling it “my real home.”

I hope you’re enjoying the summer. (That is, if you live in the northern hemisphere. Believe it or not, we have some readers from Australia and elsewhere below the equator.)

Carlen
carlenmaddux@maddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here. Also, my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon or ordered from any bookstore.

Are You Going to Love Me Forever and Ever?

For a month or more, Bob Beckett sang the same verse over and over: “I am going to love you forever and ever. Amen.” He’d bought a Don Schlitz CD after attending an event headlined by the Country Music Hall of Famer, and listened to it day in and day out.

Bob was singing this song one morning about three years ago while sharing breakfast with his wife Kaki. He often fixed her breakfast in bed, after signs of dementia had cropped up. Finishing the song, Bob said: “Kaki, I am going to love you forever and ever. Are you going to love me forever and ever?”     

“She looked at me for a minute or longer and then with a smile on her face said: ‘Well…at least until you run out of money.’”

“What a great memory for me. This was one of those ‘ah-ha’ moments when I knew she was all there because it’s the type of quip she would have cracked earlier in our life. This story is especially meaningful to me now that Kaki has lost her ability to talk.”  

Bob Beckett is one of this blog’s readers who agreed to share his family’s story when I posted a request two months ago.

      Bob and Kaki this year on their 53rd anniversary, May 30

      Bob and Kaki this year on their 53rd anniversary, May 30

For the first four decades of marriage, Bob and Kaki busily went about making a living in the Nashville area, growing a family of two daughters, traveling, being involved in their church, playing and working with friends. Bob, now 76, worked in computer system sales, advertising, marketing, and consulting. Kaki, 75, taught middle school.

Describing Kaki, Bob wrote a note last year in her voice. Here’s an excerpt: “I was amazed and thrilled when first holding my new born daughters; being their mother is the most fulfilling experience of my life. I have marveled at the first sunrise in North America from Cadillac Mountain in Maine and watched the sun set from Haleakala on Maui. I panned for gold in Alaska, fascinated by the dancing Northern Lights; watched the Penguin Parade in South America and Australia; enjoyed a string concert in Vienna; Ballet Folklórica in Mexico City; sailed to many islands in the Caribbean; and dove into the deep blue off Tahiti.

“I accomplished a personal objective to visit and enjoy the beauty of all fifty of our United States and the pleasure of 70-plus national parks, battlefields, monuments, and recreation areas. I enjoyed park concerts, waterfalls, hiking, quilting, and good red wine.”

I asked Bob some questions, which he readily answered. Our conversation is edited for brevity and clarity:

Me: When did you notice a possible problem with Kaki?
Bob:
I first suspected dementia in early 2006. (Kaki was 64.) We were on a cruise outside Rio de Janeiro. Kaki always had a perfect sense of direction, but on the ship she couldn’t find her way back to our room. A little later I noticed Kaki had problems with balancing our checkbook, which she’d done throughout our marriage.

CM: When did you know for sure?
BB:
It wasn’t until 2009 that Kaki was diagnosed with mild cognitive impairment. For a while, our two daughters didn’t recognize the problem because they don’t live here, and Kaki could cover it up well during short visits. (Andi, 48, lives outside Knoxville and Susi, 45, is in Atlanta.) I finally asked each one to come separately and spend three days and two nights with their mother.

Afterwards, when we were all together, Kaki, Andi, Susi, and I went out on the back porch and had a long cry. Kaki then agreed to go for an evaluation. 

CM: Is Kaki still at home?
BB:
Yes, I’m still able to care for her. I spend about four hours every morning just relearning how important it is to move at her speed. After all this time, I still want to move and get things done and get on to the next thing. Our only real routine is morning bathroom, breakfast in bed, shower when necessary, dress, nap, and get ready for the day. I usually need to feed her.

CM: Do you have help?
BB:
To a degree. Kaki goes to a day care center twice a week for 4-6 hours a visit. I almost always go to Panera Bread after dropping her off. I started going there just to be in the presence of other adults; it’s been a great place to relax and see others enjoying good food and life.

A caregiver also comes in two Sunday mornings a month, which allows me to go to my Sunday School class, church, and then brunch with friends. Our daughters also give me a weekend off every couple of months.

I experimented with bringing a caregiver into the house, but Kaki ran her off. These days, Kaki’s frustrations can quickly turn to anger.

CM: Does Kaki still recognize your family and friends?
BB:
She always recognizes Andi and Susi. It takes her five minutes or so to recognize our three grandchildren. As for friends, I’ve heard her in the past say, “I don’t know your name, but I know you’re someone I love.” Kaki’s always ready for a hug.

CM: What are you doing to take care of yourself? 
BB:
Not enough. Until 2015, I walked consistently in our neighborhood park but now I’m reluctant to leave Kaki alone. I will walk when I take Kaki to the day care center and don’t have other errands to run. And then our church’s Stephen Ministry members stay in close touch with us. (The Stephen Ministry helps connect the needs and gifts of church members on a one-to-one basis. Bob was an active member in this group until he no longer could be.)

I do participate in a support group, the second Tuesday evening of every month. Our friend Dr. Petrie leads this. He really lets the questions and concerns arise within the group. (Dr. William Petrie is a geriatric physician at Vanderbilt, whose mother had dementia. He’s also Kaki’s doctor.)

CM: I share in my book, A Path Revealed, that taking my wife’s car keys was one of the toughest times we faced. How was it for you?
BB:
Fortunately, we have a service here in Nashville that helps with that. Vanderbilt’s Bill Wilkerson Center will evaluate driving skills when referred by a medical doctor. I can’t say enough good things about the way the center conducted the driving test and the sensitive debriefing they gave Kaki and me. They’ve done this so many times that no one ends up being the bad guy. 

CM: Are you afraid of anything at this point?
BB: One of my big concerns is the best way to handle our financial plans. I expect most of us who are faced with long-term dementia issues are worried about running out of money. The quality of health care available to our loved ones is largely dependent on our financial wellbeing.

CM: You’ve been at this a long time, Bob. If a friend asked for your insight into dealing with a spouse’s dementia, what would you say?
BB:
Interesting that you should ask that, because it’s already happened a couple of times. I’ve actually typed these on to my iPhone notes:

  1. First, get out of denial.
  2. Educate yourself about dementia.
  3. Find support from other caregivers.
  4. Address legal documents and plans.
  5. And finally, but certainly not last …Love one another and have fun while you can!

CM: Any other thoughts?
BB:
Yes. I recognize we’re on a long journey, and I don’t know how much further it will be. So far it’s been 11 years, and I still appreciate learning from those who have gone before and are willing to share their experience and thoughts.

CM: Thank you, Bob, for your willingness to share with us.

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

Next month I’m going back on the road to share our story with a couple of groups. If you’re in the vicinity of either, please think about coming. I’d love to see you.

  • Tuesday, July 25, 7-8pmMontreat Conference Center. (near Black Mountain, NC, about 15 miles east of Asheville.) I’ll be talking during one of the Summer Lecture Series, in the Lower Left Bank building. Our children David, Rachel, and Kathryn will be here with their families. My wife Martha grew up in Montreat in the summers, often calling it “my real home.” Our family’s had a summer cabin here since 1980.  
  • Sunday, July 16, 10am… The Reserve Worship service. Sunset, SC, north of Clemson and west of Spartanburg. Reserve Worship describes itself as “a multi-denominational gathering.” I was invited by my friend Pamela Smith; we’ve known each other longer than we can remember, having gone through elementary and high school together.

Have a great Fourth of July,
Carlen
carlenmaddux@maddux.com
www.carlenmaddux.com

P.S. If you’d like to share your story in dealing with a crisis, whether health or otherwise, please email me here. A handful of other readers already are participating.

P.P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here. Also, my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon or ordered from any bookstore.

What I Heard on My Book Tour

I’m back in St. Pete from my 10-day “book tour” in Tennessee. Believe it or not, hometown friends even asked me to return to Cookeville. LOL.

I shared our story with 160 or more folks at the Alzheimer’s Tennessee conference in Knoxville and at two venues in Cookeville. On top of those, I also had two media interviews, which may come out later.

Those attending had questions and made a lot of comments, a few of which I’ll pass along to you.

Before doing that, though, I want to recount the overarching theme I shared with these groups…

"A health crisis like Alzheimer’s is often addressed by the medical community as a physical issue only. But my experience over the last two decades has shown me that Alzheimer’s and many other crises—health or otherwise—are also embedded with emotional, psychological, and spiritual issues that must be realized and resolved as best we can if we want to have any healing. Issues like fear, guilt, stigma, confusion, bitterness, anger, depression … and I could go on and on.”

This was true for my wife Martha and me, and I suspect it’s true for many. You’ll have to decide if it is for you.

                     My hometown library

                     My hometown library

Reflecting on this theme, and depending on the allotted time, I explored with these groups three of our family’s experiences, which you may recognize from earlier posts:

This is one of the first questions I was asked: You said you got advice early on to be gentle with yourself, which you found so difficult. Why was it difficult for you?

My response: First off, I’ve been driven much of my life by an obsession that I now perceive to be a disease called “perfectionism.” If I didn’t get something right, I often beat myself up. And a volatile issue like Alzheimer’s can drive even the healthiest of caregivers nuts. As soon as some stability appears, the floor can drop out from under you. This is why I keep saying to fellow caregivers, “If you truly want to take care of your loved one, you must first learn to take care of yourself.” It’s not easy. In fact it may be the hardest lesson a loving caregiver must learn; it seems so counter-intuitive.

Echoing my perfectionist tendencies, Martha and I were told by the nun we visited in Kentucky: “You might want to explore the difference between willfulness and willingness.” It took me a long time to understand that difference. We both were stubborn and we operated in willful enterprises, Martha in politics and I as an entrepreneur publishing a magazine.

These are a couple of the reasons that it finally dawned on me that I needed to be healed in my own way as much as Martha did in hers.

Question: Much of your experience described in your book brings out the skeptic in me. Nonetheless, I’m intrigued.

Answer: We were told by the medical community that there’s no hope with Alzheimer’s. Were there some chance of recovery, or at least some protracted delay of the symptoms, I doubt my readings would have been as far-reaching or our contacts and encounters as diverse. But when you’re desperate to find a way out of your dilemma you’ll do almost anything and go almost anywhere. By exploring the medical and spiritual outposts described in my book, I learned this about myself:       I truly grow only when I step outside my comfort zones.

     Sharing our story at the Alzheimer's Tennessee conference

     Sharing our story at the Alzheimer's Tennessee conference

Q: Are you saying that you can damage your health by carrying resentment and not forgiving someone?

 A: I’m saying it can increase the odds of that occurring. I first heard such 2+2=4 logic from my mentor, the late Canon Jim Glennon, an Anglican priest in Sydney, Australia. Resentment and fear, he told me, often are drivers of stress. He learned this the hard way through his studies and personal experience. And medical research is bearing him out today as it reveals ever more clearly how long-term stress can damage our immune system. Until diving deep into Canon Glennon’s teachings, I’d always thought of forgiveness as a nice religious virtue that I could do at a time and place of my choosing, whenever it was convenient for me.

No more.

While listening to Canon Glennon’s tapes, I was reminded of this startling statement by Frederick Buechner in his book Wishful Thinking: “Of the Seven Deadly Sins, anger is possibly the most fun. To lick your wounds, to smack your lips over grievances long past, to roll over your tongue the prospect of bitter confrontations still to come, to savor to the last toothsome morsel both the pain you are given and the pain you are giving back—in many ways it is a feast fit for a king. The chief drawback is that what you are wolfing down is yourself. The skeleton at the feast is you.”

Ouch! Suddenly the importance of forgiveness hit me square between the eyes. And Martha and I began to work on our long-held resentments. I learned quickly enough the importance of not only forgiving those who hurt me through the years but also of forgiving myself of failed efforts long past as well as for my failures in caring for Martha. That’s what I mean by being gentle with myself.        

Q: How did your children react to their mother’s illness?

A: I don’t have time to go into detail here; I do devote a chapter in my book A Path Revealed to their responses. Nonetheless, our children gave me the greatest gift possible—a weekend a month off while they stayed with their mother; I usually went to a nearby monastery. I believe our children today support each other more than they would have otherwise. Not that I would wish such a crisis on anyone in order for the adult children to get along.

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

The more I’ve talked with groups, the more I refer to our 17-year struggle with Alzheimer’s as an odyssey rather than a journey. The word “journey” feels too tame. It feels to me like you’re walking easily along a path toward some planned destination.

An “odyssey” in its classical sense begins when you find yourself lost in an alien land—hurt, scared, and confused. You want to get back home; you’re desperate to get home. You’ll risk almost anything to get there, you’ll endure almost anything. And you will experience things never before imagined. When you do get home, you realize that home is not the same place as when you left. Nor are you the same person. That better describes the path traveled by Martha, our children, and me.

I’ll close with this observation that I shared with the groups in Tennessee: Twenty years ago Martha turned 50 and within three weeks was diagnosed with early onset Alzheimer’s. After all we went through since that diagnosis, I now understand that there’s a vast difference between believing in God and in believing God. I’ll be chewing on that insight the rest of my life.

Thank you. It’s good to be back.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.P.S. My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon or ordered from any bookstore.

 

 

One Year Later: This Doctor with Alzheimer's Diagnoses His Progress

Little has changed in the past year from when Dr. David Compton and I spoke. You may remember him. Dr. Compton is the family physician from Oak Ridge, TN, who in 2015 was diagnosed with Alzheimer’s at an early, early stage.

“I’m pretty much in the same place,” he says. “I’m doing everything I know to do in order to not come off this plateau.”

For those of us who’ve grappled with Alzheimer’s or other forms of dementia, you know that to experience little or no change would be welcome news indeed.

David, 62, and I decided to continue our conversation now for a couple of reasons: First, he says, “Talking with you again helps give me a marker from one year to the next.”

Secondly, David has established a routine that might prove useful to those reading this. He sounds more certain of his program today than when he was getting used to it last year. He was a bit tentative then, unsure of the results. Now David sounds like the doctor that he is—more confident of the program’s direction and results to date while he continually tracks markers of his behavior.

                                                              A whirlpool of flowing wood                                                                                                             One of David's many photos from his hikes

                                                              A whirlpool of flowing wood                                                                                                             One of David's many photos from his hikes

I won’t repeat our conversation from last year. If interested, you can read it here: What a Doctor Prescribes on Learning He Has Alzheimer’s.

As we talk, David is articulate on some complex subjects, such as our health care system. “Stuff I’ve known for decades I don’t lose.” As a doctor, he’s followed health care issues closely since the 1990s. In fact, he recently posted a chart online taken from Foreign Policy magazine in which the average life expectancies for citizens of industrialized countries were compared with their per capita health care costs. You can see the story and chart here.  

We continue our conversation:

Carlen: To what extent has your wife Andrea taken on the role of caregiver? (She is by training a nurse practitioner.)
David: Not at all yet. She wants to be sure I’m not declining so she does watch for little, more subtle changes.

       David with Andrea and daughter Amy (May 2012)

       David with Andrea and daughter Amy (May 2012)

CM: You describe your maintenance program as “good cognitive exercises.” What do you mean?
DC:
That includes things that are both quiet and socially interactive.

CM: Such as?
DC:
Well, I love to cook; I have 100 or so recipes that I draw from. And I continue to learn aspects about my photography by working with an expert or two. I also attend lectures at nearby Roane State (community college). And I participate in something of a support group offered by Alzheimer’s Tennessee called the Memory Café (invitation only). I also go to new sci-fi movies with my buddies, and I’m still working in the street kitchen every Tuesday.

CM: From your posts on Facebook and Twitter you appear to read a lot.
DC:
  Yes, short news articles and medical journal articles. But I can’t finish a book. Andrea often clips articles that she thinks would interest me.

CM: So you’re learning a lot?
DC:
Yes. My routine is fixed, but I'm learning a good bit from the activities within my routine.  

CM: How often do you visit your doctor?
DC:
I see her twice a year. (Dr. Monica Crane is a geriatric medical specialist and researcher.) But I visit my cognitive therapist every two weeks. She designed a lot of what I’m doing. If you don’t deal with depression and fear, it can cause problems. Sometimes I feel like I’m watching a patient—myself—as I look for changes.

                               Camouflaged turtle

                               Camouflaged turtle

CM: Do you still have nightmares or panic attacks?
DC:
No. But I do get frustrated occasionally, wanting to do something I no longer can. I wish I could still practice medicine, but it got too overwhelming.      

CM: Are you continuing to walk five miles a day, weather permitting?
DC:
As much as I’m able. I’m having some trouble with my hip so that’s slowing me down. I always go with a friend if I’m on a new trail. And I’m shooting as many pictures as I can.

CM: Are you taking any meds?
DC:
No. I was on a medication a year ago, but it wasn’t worth it.

CM: Are you in an experimental program?
DC:
I initially was told I needed to be worse off before I could participate. But the more I read about the research studies, they’re not that good. I’d rather do the cognitive work I’m doing.

Thank you, David, for taking the time to update us on the ways you’re taking care of yourself. I’m sure readers will gain some valuable insights.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. Cookeville, TN (My hometown). I’m sharing our story on Saturday, May 20th at 1:30 (CDT) at the Public Library. I’d love to see you if you’re in town. Two days earlier on Thursday, May 18th I’m talking in Knoxville at an Alzheimer’s Tennessee Inc. meeting. It will be a half-day morning session with lunch in which I and others will be speaking. For more info, click here.

P.P.S. Feel free to forward this post to family and friends. If you’d like to sign up for my blog, it’s free by clicking here. You may purchase my book A Path Revealed at any book store or on Amazon.

 

 

 

May I Introduce You to One of My Heroes?

Meet Beverly Wimberly.

She’s responsible for an entire floor of 60 residents in her nursing home, and she supervises three shifts of eight nurses and twenty aides.

She was my wife Martha’s best friend at Menorah Manor in St. Petersburg, and remains mine. If no one else could fulfill a need of Martha’s, Beverly often could. She was my “go-to” person as well as humorist-in-charge.  

Humor resolves a lot of the emotional issues that can arise daily on her third floor, Beverly tells me. She certainly kept my spirits up when I poked my nose in her office: “You again. What do you want now, Carlen?” And we’d both crack up.

If ever a person has experienced the full range of symptoms and behaviors that arise from Alzheimer’s and other dementias—with victims and families alike—Beverly stands atop the list. She’s an LPN who for 21 years has worked in a nursing home setting. She’s a pro’s pro.   

That’s why I decided to pick her brain and share some of Beverly’s thoughts on caregiving with you. Following are her responses and insights.

Carlen: Martha lived at home for a decade before moving into Menorah Manor. The move was emotionally tough for our children and me. How do you and your staff help families get past this shock?
Beverly:
It’s a hard transition for some people. Here’s what I tell them: “We’re going to take good care of your loved one, and we’re all going to be family here. It’s time for you to spend quality time with your loved one while you let us do the heavy lifting.”

CM: What tips do you have for someone looking for the right nursing home for their loved one?
BW:
My mother-in-law had to go to a nursing home before she passed. Check out the environment. Is it clean and well kept? Have several conversations with the staff; not just administrators but also those working on the floors. See what the rooms look like; not just the ones you’re being shown. Look closely at the residents. Are they groomed and clean?  Don’t just visit at an appointed time; pop in unannounced. If the staff knows you’re coming at one o’clock, then they’ll have everything picked up, clean, and ready for you.

CM: Some of these suggestions also sound like good advice once your loved one has moved into a nursing home.
BW:
Yes, they are. Especially the one about popping in unexpectedly.

CM: What are some of the basic things you would suggest for a family member to do for a loved one in a nursing home?
BW:
Visit often. Hang up family pictures. Make their room into a home-like atmosphere. That room is all they have. Bring a quilt or comforter that they really like. Come any time. We have no visiting hours here as long as you don’t disturb a roommate.

CM: I suspect you see all kinds of family caregivers.
BW:
Yes I do. You have good family members and bad ones. Out of our 60 residents, ten families come here on a regular basis. Some never visit. Others sort of pop in, and before the elevator door closes they’re back on it. The regular members are supportive; they make their loved one’s room feel like home; and they come and sit with them. Their visits have a good impact; if they miss a time or two, a resident can be very upset.

CM: Describe your job, other than the administrative side.
BW:
 My job is to take care of our residents and their family members. If families are hurting, I sit and hug and cry with them. If they need something that we can provide, I get it. One time, I even went to a hospital where a resident’s son was a patient in order to help him call his mother on my floor. Other times, I’ve bought items for residents out of my own pocket when their family didn’t show. That’s my job.

CM: What’s the most difficult part of your job?
BW:
  A resident’s death. It’s like losing a friend if it’s someone I’m really attached to. I truly have to mourn. A lot of times, I just pray that I’m not there when they go.

Another hard part is when a resident needs something and you can’t give it to them. There can be a lot of “therapeutic fibbing.” For instance, if a spouse has died I may have to tell my resident that the spouse has gone to the grocery store but will be back soon.

CM: Why did you get into this profession?
BW:
I’ve always loved nursing. Even in high school when I was a volunteer “candy-striper” at Bayfront hospital.

CM: What inspires you most about your career?
BW:
My relationship with our residents. If they’re down and I can lift their spirits, I love that. If I can relieve their pain, I love that, too. I’ve learned that I can’t let on when I’m feeling down; I’ve got to put that aside when I walk onto the floor. Those times I did let my feelings show, some residents quickly asked, “What’s wrong?” I hadn’t realized that my humor and attitude had such an impact on my friends living here.    

Thank you, Beverly. You’re my hero.

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com  

PS1>In the last post I asked if any of you were interested in sharing your story with the rest of our readers, and several of you responded yes. Their stories will be published in the coming months. There’s no deadline to respond. You may let me know at any time that you’re now ready to share with others.

PS2>Cookeville, TN (My hometown). I will share our story at the Public Library on Saturday, May 20th, at 1:30 (CDT). I’d love to see you if you’re in town. Two days before on Thursday, May 18th I’m talking in Knoxville at an Alzheimer’s Tennessee Inc. meeting. It will be a half-day morning session with lunch in which I and others will be speaking. For more info, click here. 

PS3>Feel free to forward this post to family and friends. If you’d like to sign up for my blog, it’s free by clicking here. You may purchase my book A Path Revealed at any book store or on Amazon.

Will You Help Me?

May I ask you for a favor?

I’ve shared with you a variety of stories about our family in both this blog and my book A Path Revealed. Although you may identify with our story, it still is not your story. Your story has aspects that ours never will, and your insights could be of value to others.

I have this gut feel that it’s time now to make this blog more participatory among its hundreds of readers. I would like you to consider telling us your story. What problem(s) are you facing? What’s working for you and what’s not? What are you doing to try to move forward? What’s frustrating you? You may or may not have gone into the spiritual as I have; that’s fine. I’m looking for folks willing to tell others what they’re doing to survive.

Before going any further, let me relieve you of a possible worry. No, you do not have to write this! I will interview you and write the post. I’ll get into more of that in a moment.

This request may be asking you to step outside your comfort zone. Months ago, I revealed what this was like for me in this post: It’s Not Real Comfortable Outside Our Comfort Zones, Is It? But That’s Where Growth Comes. I share a quote that’s purportedly by Flannery O’Connor, the Southern Gothic writer: “You shall know the truth, and the truth shall make you odd.” To be as authentic as I could in telling our story, I wound up feeling “odd.” What happened with Martha, our children, and me was far from what had been “normal” in our previous lives.

             Our family Thanksgiving 2015

             Our family Thanksgiving 2015

What I’m saying is this: if telling your story to others makes you uncomfortable then you’re no different than the rest of us. It takes courage to share. But sharing may very well be of more value to you than to others. It could bring you greater insight and understanding than you’ve had by keeping it to yourself. That’s been the case with me.

Here are some guidelines to this experiment, which I hope we can make work:

  • You talk and share; I will write.
  • You may remain anonymous in the published post, if you desire.
  • Your specific crisis or journey may be current or past.
  • Your issue does not have to be about Alzheimer’s, as ours is, or about an illness. It could be about working through a financial crisis or a relationship gone bad. A question our readers will want to know is: What have you done or are doing to work through your issue and to survive?
  • I will ask you questions that will be kick-starters for our conversation.
  • I will let you see my draft before it’s published to check for errors and misunderstandings on my part. 
  • What’s the process? Typically we’ll talk by phone for 30 minutes or so; while working on the draft I may email you some follow-up questions; I’ll send you the draft for review; it will be posted on the scheduled date.
  • In writing the draft, I will follow the guideline I’ve set for myself: Share! Don’t preach!
  • Don’t think you must have found all the answers before sharing. I still haven’t. It’s as important for someone to see your struggle as it is to see any resolution.

I’ll typically write your story in the style I’ve written mine: As one survivor sharing his or her story over a cup of coffee with another survivor.

I hope this intrigues you enough to step outside your comfort zone. If so, please email me that you’re interested in doing this and I will get in touch. My email: carlen@carlenmaddux.com.

Also, you may have a friend or family member who’s not signed up for my blog but who’s willing to share his or her story; feel free to pass this along. If they would like to sign up for my blog, it’s free…just click here.

Let’s make our stories what they’re meant to be: An agent of healing for ourselves as well as for others.

Thank you,
Carlen
www.carlenmaddux.com

PS1>A quick reminder: I’ll be sharing our story this coming Tuesday, April 4th, in St. Petersburg at 12 noon. Location: The Cathedral Church of St. Peter in the Parish Hall; 4th Street and 2nd Ave. N. Entrance is on the 2nd Ave. side. Admission is free; they offer a light lunch for $5.

PS2>Knoxville, TN. Thursday, May 18th. I’m talking at an Alzheimer’s Tennessee Inc. meeting. It will be a half-day morning session with lunch in which I and others will be speaking. If you’d like more info, email me at carlen@carlenmaddux.com and I will send you their flyer.

PS3>I continue to be amazed at how much my book is getting around, as I described in my last post. Friends, and friends of friends, keep telling me they’re buying extra copies for family and friends and for their book clubs. Thank you yet again. If you haven’t read it and would like to, you can order it at any bookstore or buy it here: A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s.

 

A Thank You Note from Me to You

My book launched six months ago, and you’re largely the reason it continues to be doing so well. Many of you have bought multiple copies to give family and friends and you’ve shared with your book clubs, support groups, and church groups.

Here’s a quick look at the progress of A Path Revealed:

  • In October and November, the first two months of its launch, sales of A Path Revealed ranked in the top one-half of one percent among Amazon’s millions of books.
  • In the most recent two months, the ranking trailed off a bit as expected, but not by much. It currently ranks in the top 1.6%.
  • Nielsen Book Scan (a division of the TV ratings company) shows that A Path Revealed has sold in 80 of 100 U.S. markets. To my mind, 80% is an amazing penetration in its first six months.  
  • My book’s top 10 markets are, in descending order: Tampa Bay; Nashville (includes my hometown Cookeville); Asheville (includes Montreat, where Martha and our kids spent summers); Atlanta; Louisville; Los Angeles; New York; Boston; and Houston.  Followed by Richmond, Chicago, Raleigh-Durham, Washington DC, and Orlando.

But enough with facts, figures, and trends. (Sorry, I was having a flashback to my business magazine editing days.) These numbers are at best an imperfect reflection of what really counts—whether our story is connecting with your life’s story.

As you know by now, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s is not a guidebook for caregivers. Rather, it’s a telling of the spiritual odyssey Martha, our children, and I traveled as we traversed Alzheimer’s uneven and uncertain terrain over 17 years.

“I just read your book,” says one reader. “I feel like we’ve been talking to each other. I don’t have words to express what I was feeling as I read it. It’s so vulnerable. And you’re willing to delve into the spiritual realm.”

And another: “Carlen’s experiences and the way he responded to them can help many who are facing a crisis of their own. I highly recommend this book to anyone facing a crisis and lost in how to respond. We can't do it alone! I also appreciate the way Carlen makes it clear that his experience was a Christian one because that's his heritage (as is mine) but similar resources are available in other faith traditions. Give yourself a gift and read this book!”

As I tell our story I do try to be clear that I’m not interested in scoring theological points. Our story is about trying to survive, about finding what works and what doesn’t as we move through a dark, inscrutable maze. Yet to be authentic, I have to share it in the terms and concepts of the tradition that I know: my Christian faith. As you also must do in seeking to understand your story, whether you are Jewish, Islam, agnostic, Christian, Hindu, atheist, Buddhist, or secular.

My experience the past two decades has convinced me that virtually ever crisis—mental or physical illnesses, soured relationships, lost jobs, addiction, lost savings, whatever—is embedded with emotional, spiritual, and psychological issues that must be recognized and resolved as best we can. Whether these issues are contributors to a crisis or consequences, they cannot be ignored if we hope to move forward.    

At some point in our lives, many of us will be confronted with this question: Do I want my family and me to survive this crisis? If so, what must I do?

Here’s more feedback from readers of my book and blog. Some are friends, others I’ve not met. Their comments are edited for clarity and brevity:

Reader 1: “I sent my mom A Path Revealed because I knew she’d like your spiritual journey. What I didn’t expect was how she would apply your book to other residents in her assisted living center. In fact, two are related, a mother and son. The mother has Alzheimer’s and the son, who has a list of health problems, has been struggling with the changes he sees in his mother. My mom has been reading parts of your book to him. So not only did she love the spiritual journey, she is practicing patience and kindness, and now also has a purpose in helping others.”

Reader 2: “It’s wonderful to know someone else really understands and cares about those of us experiencing the crooked, up and down path of Alzheimer's.” 

Reader 3: “Having been an ordained Presbyterian minister for 42 years, I discovered in my retirement that I would have surgery on my eyes, my back, and my heart. While recovering from one of these adventures, I told my wife that it would have been good for me to have these surgeries while I was in my twenties, the reason being that they would have made me a more sensitive and caring pastor. Carlen's book served the same purpose: it caused me to be a more sensitive and caring person. I thank him for writing it, and I encourage everyone to read this well-written and provocative account of one couple's dealing with Alzheimer's disease. It is one of those books which cannot help but change your life.”

Reader 4: “My wife was diagnosed with dementia a couple of years ago. I’m a retired minister, and I picked up on contemplative prayer not long ago after reading your book. I’m sleeping better than I have in years.”

Reader 5: “I’ve finished reading your book and am now reading it again! I read it with many tears for what you and Martha went through. How wonderful that you allowed God to go through it with you. Thank you for recording your journey so honestly and openly for others to benefit.” 

Reader 6: “Your story challenges me spiritually to look at the dark corners of my life that are too easy to gloss over. I was very moved, and I hope to go deeper in my own times of reflection. My words cannot express the deep respect and conviction I feel from your story.”

Reader 7:It's been 16 years since my mother died of Alzheimer's at 82 and this is the first time I've had the courage to read a book like this. Carlen's spiritual journey and mine have much in common, including John Main's meditation and silent retreats at Gethsemani. His story would provide inspiration and practical ways of dealing with any of life's difficulties. I found his honesty and comforting writing style to be a soothing balm.”

Reader 8: “I was surprised to discover how enlightening and positive Carlen’s story is, rather than dwelling on all of the negative facts that can accompany a diagnosis such as Alzheimer's. He leads the reader through his own grieving, healing, and self care. I recommend this book to any caregiver, regardless of who they are caring for and what diagnosis the person has. It will provide comfort for many.”

Thank you for your feedback and for sharing our story with your friends, family, and strangers along the way.

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

On another front, you may want to mark your calendars if you’re near where I’ll be sharing our story. I would love to see you:

  • Tuesday, April 4th in St. Petersburg. I’m speaking at a monthly Book Talk at The Cathedral Church of St. Peter, 12 Noon in the Parish Hall; 4th Street and 2nd Ave. N.; entrance is on the 2nd Avenue side. Admission is free; they offer a light lunch for $5.
  • Thursday, May 18th in Knoxville. I’m talking at an Alzheimer’s Tennessee Inc. meeting. It will be a half day morning session in which I and others will be speaking. The date is firm. As I receive more detail re. location and time, I’ll share in upcoming posts.
  • Tuesday, July 25th in Montreat, NC, (Asheville area). I’m sharing at a Summer Lecture Series, 7:00 p.m., at the Lower Left Bank.

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

P.S. A couple of posts ago, I introduced you to caregiver blogger-columnist Carol Bradley Bursack. She posted last week a column on the relationship of a healthy brain with a healthy heart. Might be worth checking out.

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.

Desperate, I Needed to Be Quiet and Still

“I think a lot of people do come to meditation out of desperation. They’ve tried everything else and nothing seems to quite work.”

That statement is by Fr. John Main, the Benedictine monk who years ago taught my wife Martha and me the way of contemplative prayer. I was listening recently to a tape of his with a church group who gathers regularly to meditate, and for the first time in 20 years I realized why I was so drawn to this type of prayer at that time in my life, when it was such a rare practice among Christians, especially Protestants. Martha, who was 50, had just been diagnosed with Alzheimer’s disease and our life was collapsing before us. We desperately needed something to hold on to, something real.   

John Main continues: “This experience (of desperation) is a kind of poverty, and it’s only the beginning. In meditating, what we learn to do is to build on our poverty, to deepen it. The great thing we have to understand is that the summons we have from Jesus is to follow The Way. Not my way, but The Way. And that’s very difficult for modern men and women to understand because almost everything in our experience propels us to look for ‘My Way’—what will bring me happiness, satisfaction, fulfillment.”

            Fr. John Main

            Fr. John Main

Our friend and mentor Rev. Lacy Harwell introduced us to John Main’s practice of silent prayer. With his encouragement, I searched online for Main’s material and ordered his book Word into Silence and a set of tapes, In the Beginning. Martha and I soon began to meditate together for 15 minutes or so, both in the morning and early evening when possible. This practice did help stabilize our feelings in this ever-churning crisis. And it drew me—and Martha, too, I think—into an intimacy we’d rarely experienced in our 25 years of marriage.

John Main’s thrust was to move the practice of meditation beyond monastic walls, to reach those of us who lead rather hectic lives juggling work, family, friends, hobbies, and whatever else. While not delving into the actual practice of meditation with this post, I do want to share with you a website I stumbled onto a decade ago—the Contemplative Life Bookstore. It’s as complete a resource center as I’ve found. I understand that not everyone is interested in this kind of approach to silent prayer and stillness—whether it’s called contemplation, centering prayer, Christian meditation, lectio divina, or something else—but if you’re the least bit curious you may want to check out this website.      

Joe Doerfer says he opened the site in 2003 in partnership with the World Community for Christian Meditation (WCCM), the organization that evolved after John Main’s death in 1982. Talking with Joe, this resource center sounds more like a labor of love than a profit-making business.

Back in the ‘70s, Joe got into Transcendental Meditation (TM) “because of my job’s high stress.” Much of his career was spent in the competitive field of book printing and binding. Raised Catholic, Joe practiced TM for about five years until his interest faded. After a heart attack and open heart surgery, he sought to understand more about how to maintain a healthy heart. In his search, he got quite the surprise when he came across a book called The Good Heart. It turned out to be by the Dali Lama and subtitled “A Buddhist Perspective on the Teachings of Jesus.” The book is a transcript of a London retreat the Dali Lama headlined in 1994 at the annual John Main Seminar that is sponsored by WCCM.  

Seeing this book “was the first time I’d seen the words ‘meditation’ and ‘Christian’ used together,” Joe says. As he explored further, “I knew I’d found what I was looking for.”

Joe Doerfer, founder of the          Contemplative Life Bookstore

Joe Doerfer, founder of the          Contemplative Life Bookstore

The more deeply Joe connected with WCCM, and because of his chosen career, he was asked to publish books for WCCM and to launch this website, which has broadened significantly since I first saw it. Joe now carries an inventory of about 200 books on various contemplative teachings and about 100 videos and CDs. From classics like St. John of the Cross’s Dark Night of the Soul and St. Teresa of Avila’s The Interior Castle to 20th and 21st century teachers like Thomas Merton, Richard Rohr, Thomas Keating, and Henri J.M. Nouwen. (For the sake of transparency, my book A Path Revealed was recently added to his listings.) Joe’s weekly e-newsletter of product updates is sent to 6,500 interested persons.

Joe sees a slow movement toward a more contemplative lifestyle. Yet he says it also can be hard for people to buy into. The practice sounds easy enough, “but as soon as many find they have to work at it, they stop.” He, like I, finds meditation to be something of a mirror into his interior self. He sees personal traits he likes and traits he doesn’t like as well as memories he’s not proud of. But by continuing his practice “I’m able to deal with those and move forward.” 

When Martha and I began to meditate in 1997, I felt a bit heretical because I, in my ignorance, thought this was an Eastern religious practice cloaked in the form of Christian prayer. But I soon learned that within Christianity the practice could be traced as far back as the Desert Fathers and Mothers of the third and fourth centuries. Yet the practice goes even further than that within Christian and Jewish tradition: “And Isaac went out to meditate in the field in the evening…” (Genesis 24:63, RSV). And “…after the earthquake a fire, but the Lord was not in the fire; and after the fire a still small voice. And when Elijah heard it, he wrapped his face in his mantle…” (1 Kings 19:12-13). Over these 20 years, I’ve come to understand that such deep, sure truths like silent meditation—regardless of the forms they may take—are evidenced throughout the world’s great religions.

If you do go to the Contemplative Life Bookstore website, avoid becoming overwhelmed; there are a lot of choices. Find an approach that you’re comfortable with, and go deep.

I leave you with John Main’s admonition that still rings in my ear, and I paraphrase: You can read and read and read, but the important thing is to practice, practice, practice.  “We’re all beginners.”

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

P.S. If you’re interested and in this area, I’ll be sharing Martha’s story and mine at a monthly Book Talk at The Cathedral Church of St. Peter on Tuesday, April 4th, 12 Noon in the Parish Hall; 4th Street and 2nd Ave. N. in St. Petersburg; entrance is on the 2nd Ave. side. Admission is free; they offer a light lunch for $5.

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.

btw… Look what I found in Haslam’s Book Store in St. Petersburg, one of Florida’s oldest and largest. As one friend snickered, “Who left it there?” Yuk-yuk-yuk…

It's About Quality of Life, Not Quantity

“I should have taken advantage of my sister coming in on Sunday afternoons,” says Carol Bradley Bursack. “But I didn’t.” She chose instead to do other caregiver chores while her parents were in good hands. Carol is referring to a time in her life when she was the primary caregiver for her disabled son and five elderly adults—her parents, her aunt and uncle, and Joe, the deaf widower next door.

“I didn’t take care of myself,” Carol acknowledges today. “I have a strong spiritual life that got me through a lot, but...” But now she understands the importance of caregivers caring for themselves as well as for their loved ones.

Carol no longer is a primary caregiver, but she’s still busy as ever focusing on the art and science of caring for the elderly (including issues of dementia). Living in North Dakota, she writes a weekly column for Fargo’s daily Forum and its 30 sister newspapers. She also posts a daily blog on her website, Minding Our Elders, and on the popular sites HealthCentral and AgingCare.com, all while tweeting and sharing on Facebook.

A decade ago, she published a book titled Minding Our Elders: Caregivers Share Their Personal Stories. Its purpose, she indicates, is to “offer a portable support group. The stories are honest looks at many different situations with a common thread: that caregiving is hard work, and—at least in hindsight—personally rewarding. The stories give comfort and assure people that they are not alone.”

Carol ranks among the most active advisors I’ve found online. Her advice is sound, filled with common sense that’s grounded in her personal experiences. "My mission today,” she says, “is to break the isolation of caregivers and seniors and give them a voice."

Here’s a sampling of her recent posts: “Evidence of Dementia Is Clear to Neighbor but Adult Children Are in Denial”; “Recovering from the Guilt of Placing a Loved One in a Home”; “A Deserved Vacation from Caregiving Should Be Guilt Free”; “Needs of ‘Elder Orphans’ Is a Growing Concern in an Aging Population”; “Tips to Help Elders Give Up Driving.”

Two decades ago, when my wife Martha was diagnosed with Alzheimer’s at the too early age of 50, I came across a handful of helpful books but few if any advisors online; the internet was in its infancy.

Carol’s father suffered from dementia, though not Alzheimer’s. It resulted from surgery meant to correct a brain injury sustained years earlier in WWII. While caring for him, Carol says she stumbled onto a practice now called “validation.” Her father could talk, but his view of reality was different from most others. “I tried to get into Dad’s head, to connect with where he was. If Dad wanted to obtain an elephant for the zoo, what did it hurt to give him what he wanted?”

At the time, such practice was frowned on by professionals, she says. But today, “it suddenly has become the way to treat people with dementia.”

            Carol's father              Clarence "Brad" Bradley

            Carol's father              Clarence "Brad" Bradley

A common mistake Carol sees among caregivers is “being so overly involved that you can’t see the bigger picture. Some caregivers feel that if a loved one dies, they’ve done something wrong. They feel that death is ‘losing.’”

“I’m a strong believer in quality of life over quantity.”

Another mistake she often sees is an overreaction by adult children. “It’s a good idea that they are watching, but some can become heavy-handed out of fear for their parents or they don’t want to be bothered with worrying about their parents.

“We are NOT our parents’ parents no matter how disabled they become. There is a legacy to their lives that needs to be respected. I get scared that caregiving in the wrong hands can become disrespectful and counter-productive.”

Carol closes off our conversation with these tips for caregivers:

  1. Protect your most important role—you are the advocate for your loved one. When possible, give tasks to others so that you don’t become overburdened.
  2. Learn how to take care of yourself without feeling guilty.
  3. Resources and the availability of knowledge are much better today for caregivers. Search for what’s out there, and use it.  
  4. Finally … learn to detach yourself from your loved ones’ problems. “How do you do that?” I ask. With a lot of practice, she says. Counselors and spiritual mentors can be invaluable. You must understand what you can fix and what you cannot fix.  

Thank you, Carol.

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

On another front: If you’d like for me to share my family’s story personally with your book club, church group, Alzheimer’s or aging organization, feel free to contact me by email: carlen@carlenmaddux.com. I’ll try my best to meet your request.

I recently shared with my townhome’s book club here in St. Petersburg and with the Westminster Palms assisted living community. I’m scheduled to talk in early April at St. Peter’s (Episcopal) Cathedral; also at a Lecture Series this July in Montreat, NC, where Martha spent her summers growing up, as did our children; and in early May to the Tennessee Alzheimer’s organization in Knoxville.

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

P.P.S. You can click here to check out my book A Path Revealed: How Love, Hope, and Joy Found Us Deep in a Maze Called Alzheimer’s.

   

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

                     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

           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.”

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

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)

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

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

    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

                         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?

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

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.

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

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.”

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

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.

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

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.

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

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.)

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

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.

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

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)**      

                 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

  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!

                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.”

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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.