The New Alzheimer's Stamp Is Off to a Strong Start

Dear Friends,

If you've read my recent posts, you probably are aware of the fundraising stamp issued last November for Alzheimer's. Here’s a quick update on the results since that launch, from December through March.

This comes from Lynda Everman, one of the two caregiver advocates who through a combined 27 years of effort helped make this stamp a reality...

“Last week I wrote to Mark Saunders who works in public relations at the U.S.  Postal Service and asked when we might see some figures as to how much the new Alzheimer’s Stamp has raised in its first four months on the market. Here are those results...

“Since its November 30, 2017, release 2,196,087 stamps #AlzheimersStamps have been sold to raise $280,486.21 for National Institutes of Health (NIH) funded Alzheimer's research! Together we can—and will—make a difference. Help Stamp OUT Alzheimer's!”

Based on these numbers, each 65-cent stamp delivered 12.77 cents to the NIH. To get a glimpse of how using these stamps one-by-one can add up, the cancer fundraising stamp, which has been out for several years, has to date raised almost $90-million for research.

I’m buying this stamp for all my mail, business and personal. I encourage you to buy it too. This is an inexpensive and effective way to help raise the profile of Alzheimer’s disease while raising money for much-needed research.

You can purchase this stamp at any Post Office. And PLEASE tell your friends about this stamp and/or forward this email to them.

We’re off to a strong start.

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

PS1 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

Why This Neurologist Became a Hospital Chaplain

Until now, I hadn’t met someone who’s both a neurologist and a pastor. Bill Holmes, M.D. and M.Div., is one of a kind. And it’s through these lenses of experience that Holmes—shall I call him Dr.? Or Rev.?—shares his stories in his new book, Thoughts from the Bedside.

But don’t be deceived. Holmes’s experience goes much broader and deeper than his professions. For he also is the survivor of four separate cancers; and he grew up in a family ensnared in urban poverty in his hometown of Louisville, KY.

Holmes, who after 40 years of medical practice is now serving as a hospital chaplain in Louisville, has a lot on his mind as an author and occasional poet. His thoughts range from death and dying to the collision of cancer with faith; from environmental racism to the church’s acceptance of the mobile poor, or not; from random judgments about heaven to wildernesses of hope. That should give you a smattering of the insights found in his book, which I find impossible to pigeonhole. Is this a medical book? A pastoral care book? Essays indicting poverty and racism? Or a poetic ode to living with cancer? Consider it all of the above.

On occasion, I give a book away, and this is one of those occasions. More on that later if you’re interested.

Bill Holmes, neurologist, pastor,   author, and occasional poet

Holmes’s most poignant moments, for me, find him at the bedside of those on the verge of death. Reading between the lines I could all but feel the instincts of this educated man of the cloth crying out to the medical technician within: “Do something, for God’s sake!” But with heartfelt humility learned from years of realized limitations, Holmes did what he knew best. This successful, respected doctor and chaplain leaned in and listened. It is in these moments that I sensed both the afflicted and the listener were set free from the ravages of fear. If I dare say it, I sensed both were healed.

Holmes writes: “Not long ago I sat at the bedside of a woman who was quite ill with kidney failure. Upon noticing ‘pastoral care’ on my identification badge, Margaret asked about my church affiliation. I explained to her that…I tend to leave that identity at the door. I am there for any person from any church or no church. She immediately replied, ‘No church? That is my church—no church.’ Then she told her story.”

Bill was a neurologist for children and adults from 1973-2007, except for a year in which he took off starting in August 1993. “I was getting burned out from 1988 on. I call that year off ‘my journey into the wilderness.’” 

He returned to practice for more than a decade before hanging it up in 2007. Meantime, he began night courses at the Louisville Presbyterian Theological Seminary and completed a Master of Divinity there in 2010. He began serving as a hospital chaplain in 2011.

Bill and wife Joyce with Elmo and the grandkids in the fall of 2016

Intrigued by his insights as well as by his unique career mix, I had a few questions of Bill:

Me: What would you as a chaplain tell yourself as a neurologist, if you could?
Bill: Sit longer with your patients, and listen more.

CM: Practically speaking, do you think you could have done that given all the pressures on you?
BH: I’m not sure, but I would like to have tried.

CM: You’ve survived four separate cancers. Over what period of time did they occur?
BH: From 2010 to 2016. First, there was prostate and bladder carcinoma; then colon polyps; and finally multiple myeloma. And then there was my open heart surgery in 2002 in which I had every complication but dying.

As I said in my book, “I’m white, wealthy, and insured. Otherwise I’d be dead.” (He argues for better medical coverage for all.)

CM: How did you react to these? Were you scared?
BH:  With the colon surgery, I was afraid my luck had run out. I would immerse myself in all the medical literature, trying to intellectualize what’s going on. After a couple of weeks I’d finally decide okay, let’s get on with it.

I also became one with the Old Testament psalmists. I was pissed off at God and I let him know.

CM: As a neurologist, what were the toughest situations you faced?
BH: Not being able to give a family an answer for why things are as they are with their child. Even worse was having to give the family a bad diagnosis.

I recently saw the mother of a child I’d diagnosed with an incurable situation. She told me, “I hated you when you told me the news. Your words burned deep. I still can’t get over it.”

CM: As a hospital chaplain, what are some of the toughest emotional issues you see…with the one ill and with the families?
BH: Two things. First, encountering someone who’s just learned of a new diagnosis. The sick person, though, often does a better job with the news than their family.

Second, is being with an older person who’s having to go through the end of life by themselves, with no family or friends around.

Thank you, Bill. I’ll close with these statements from your book, Thoughts from the Bedside…  
“My experiences of the last few years suggest that we as a society often fail the dying as they draw their last breath alone. We have allowed technology to either distort or redefine how we relate to each other.”

“In medicine I have found the more that is written about a subject, the less we actually know with any degree of certainty.”

“Likewise, speculation about afterlife and heaven may bring forth a wealth of print but rarely produce answers that will meet either the demands of the heart or of human reason.”

“Again, we in the church and halls of medicine cannot be dismissive of questions surrounding death and afterlife. As one pastor with a shrug of the shoulders said, ‘These are simply matters of the heart that people have to work out. I don’t believe there are any answers.’”

The Foreword is by noted Biblical scholar and author Walter Brueggemann

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

• Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Wednesday, March 28, and Friday, March 30, by 12:00 Midnight EDT. Indicate that you would like to be included in the drawing 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 Saturday, March 31. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random.
• For more details, click Book Giveaway.

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

I had a good visit two weeks ago in Raleigh, N.C., where I shared the story of our 17-year odyssey through Alzheimer’s with about 100 thoughtful and engaged folks at White Memorial Presbyterian. It was great catching up with friends Jan and Rev. Art Ross, Dr. Landy Anderton, and Steve Swayne. They were among my manuscript’s two dozen advance readers; Art wrote the Foreword to my book.

I will be on the road again after Easter for a couple of weeks. I’ll be sharing our story in Athens, AL, with the Mid-South Chapter of the Alzheimer’s Association (Thursday, April 5) and then the next day with the local Rotary Club. Afterwards, I’m off to Atlanta where I’ll meet with a class at All Saints’ Episcopal Church in Midtown Atlanta, right near my alma mater Georgia Tech. That will be at 10:15 a.m. on Sunday, April 8. Then Thursday evening, April 12th, I’ll meet with about 40 members and guests of the Women Alone Together book club.

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

PS1 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this Alzheimer’s stamp on all my personal and business mail. About 10 cents of the 65-cent cost goes to the National Institutes of Health for research. It’s an easy and inexpensive way to invest in our nation’s wellbeing and future. Join me and thousands of others and Help Stamp Out Alzheimer’s.

How She Learned the Art of Contemplative Care

“In the beginning, I cared for my mom out of a sense of responsibility. After eight years, my feeling had turned to complete, unconditional love.”

Beth Reinert was seeking to describe the often circuitous route she’d traveled during her mother’s last years.

For the longest time, Beth says, she couldn’t understand why her mom Marilyn, by then without a voice, loved to hold a ball, often kissing it. “I finally realized that this ball was her ‘baby.’ When she kissed the ball, she was kissing her child…”

“…who was me.”

Our conversation paused.

    Beth Reinert with mother Marilyn Redwood

Gaining such poignant insight “requires a lot of attention,” she says. “Momma lost her ability to speak so I had to use all my detective skills. I had to train myself to not just react to the challenges but to give a lot of thought to the problem or behavior that was being presented.”

A number of revelations came to Beth deep in the night when she was sleeping. That’s if you want to call sleep being half awake, with the problem and possible solutions tumbling over and over in your mind. “A light bulb often would go off, helping me resolve the issue at hand.”

“I guess you could call this contemplative care.” Beth describes this process as a mixture of thought, worry, and prayer. In fact her term contemplative care is reflective of the concept of ‘contemplative prayer,’ which is marked by silence and listening while trying to let your many scattered thoughts abate and deepen.

Today, Beth views herself as a full-fledged advocate for caregivers. She lives in Mobile, AL, with her husband Jeff. They have two adult sons. She’s active on social media with a website, CaregiversUnite—a place where caregivers share, learn, and exchange; a Facebook page; and a Twitter feed--@BethReinert. Beth also manages a Dementia Friendly Alabama project in Mobile, sharing dementia friendly practices in faith communities. She recently organized a successful day-long caregivers’ conference called Dementia Perspectives, which drew nearly 150 persons.

                     Beth and Jeff with grandson Solly

Equally important, Beth spends considerable time talking individually with caregivers, especially new ones, who are looking for support, resources, and ideas. “I remember all too well what wasn’t available when my mother began to decline.” It was 2008 when Beth felt compelled to take over her mom’s care.   

“I try to make myself visible to others in the community. The Area Agency on Aging is most supportive.” She speaks to community groups and has even developed a ‘caregiver toolkit.’ “Every person’s situation is unique and I try to be mindful of that. Some people are at peace with where they are; others are in need of education and a listening ear.”

I asked Beth several more questions…

Me: Your caregiving and advocacy work appears to be a “calling”. How long have you felt that? 
Beth: Most of my life. Growing up I tended to carry the concerns of my family in my heart. When my mother’s back went out, I was there to help. We didn’t always feel that close, but when there was a need I showed up. In college I majored in Therapeutic Recreation, which subsequently led to a job as the activity director in a nursing home special care unit.  

CM: You say that from your professional training you knew what was coming over the next few years, after starting to care for your mother in 2008. So you were able to keep your emotions stable and in check, to not be caught by surprise?
BR: Oh no. Although I covered my grief with a thin shell of strength and calm, in reality I was feeling fragile and distressed. It was a lonely time. Seeing my smart mother slowly succumb to Alzheimer’s disease often left me feeling helpless and ill equipped. 

Early on, we began the delicate dance of helping Momma where needed while focusing on her abilities that remained. At times I was frustrated by her choices, like finding the mail piled up in unexpected places; or agreeing to donate money to phone solicitors; or joining book clubs that I would have to undo.

I had to learn to be patient on long trips to the grocery store. I was better at that if I wasn’t hungry. And I had to remind myself that this outing was providing more than groceries. This was Momma’s way to get out of the house, interact socially, and move her body and mind in a way that was therapeutic.

        Beth sharing with her mom near
          the last stage of Alzheimer’s 

I was always concerned about doing things that would be most beneficial for her, becoming proactive on every front. It was almost like I was trying to hold back the disease by doing everything for the best possible outcome.    

Finally, during a tearful exchange with a friend at the Y something was said that changed my perspective. She said, “Everything is as it should be.” As those words sunk in, I began to think this was no surprise to God, and all I could do was the best we could. I began to hold on to Bible verses like “With man this is impossible but with God, all things are possible.” (Matthew 19:26 NIV)

CM: How did this insight help you?
BR: As we overcame challenges I began to feel empowered and ready for whatever came next. After caring for my mom for three years, I learned of my aunt’s situation—she was in memory care and her husband was dying of lung cancer. My uncle accepted my offer to help, and taught me what I would need to know before he died, which was a month later. Although I now had two people to care for, I felt it a great privilege to be entrusted with the care of my aunt, who was my father’s sister. Both of these women’s care and quality of life became a personal ministry for me, and I felt confident that God would be with us every step of the way.

By now, I was beginning to find my voice as an advocate and became an ambassador for the Alzheimer’s Association.

Beth’s mother died at age 91 in August 2015, and her aunt the next month at 95.

CM: Was your family supportive while you cared for your mother and aunt? 
BR: My husband Jeff was fully supportive and enabling. As were our sons Ivory and Simon, who had moved out of the house by the time Momma needed assistance. (Simon, a filmmaker, posted the video on Beth’s website to vimeo and Upworthy, where more than 30,000 to date have viewed it.) My sister Alice and I probably are closer than we might have been otherwise. She and her family helped where they could.

CM: Any final thoughts you want to share?
BR: I had to go through several stages of learning, despite any advance preparation I might have had. The first goal was to put my mother’s legal affairs in order: 1) we met with an elder law attorney to make sure we had a good plan; 2) we developed an “advanced directive” to make sure my mother’s medical treatment wishes were clear; and 3) we took steps to avoid probate after her death.

Next, Momma’s personal safety was my biggest concern. As her needs progressed, we had to make decisions regarding her long term care, which led us to placement in assisted living, memory care, and finally in skilled care. As we relied on others to help care for Momma’s well being, my top priorities were her quality of life, knowing she was loved, and that she was without pain. This went for my aunt as well.

The most important lesson was this: Caring for a loved one may seem like an interruption at first, but giving such care could turn out to be the greatest opportunity of your life. I can’t think of a better lesson that I’ve learned than learning to love unconditionally.

CM: Thank you, Beth, for sharing your experience with us.

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

I’m participating in a webinar next Wednesday, April 7th at 7:00 pm EST. It’s part of a “Meet the Author” series and themed: A Path Revealed: If a family in my church or group is struggling with dementia or Alzheimer’s, what can I do? This webinar is made available by Practical Resources for Churches. If interested, please register for the webinar by clicking on this link. If you can’t watch at this time but would like to see the recording later, click on the same link.

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

PS1 I’m sticking this Alzheimer’s stamp on all my personal and business mail. About 10 cents of the 65-cent cost will go to research. It’s an easy and inexpensive way to invest in our nation’s wellbeing and future.

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

After 27 Years Their Steadfast Dream for an Alzheimer's Stamp Turns True

Baltimore, November 30, 2017 — “The Postal Service is proud to issue this stamp today to help raise public awareness of Alzheimer’s,” said Postmaster General Megan J. Brennan. “Proceeds from its sale will help support urgently needed medical research into this incredibly debilitating disease.”

The ceremony to unveil this fundraising stamp for Alzheimer’s was simple and direct.

Getting to that day, however, was anything but.

It would not have happened without the iron-willed tenacity of two women who cared for their stricken husbands for too long to keep count. Altogether, the two clocked a combined 27 years before seeing their dream of this stamp become reality.  

Hundreds of emails and letters to the nation’s top elected officials; shoe leather worn thin walking the halls of Congress; treks into the bowels of the postal bureaucracy; scores of rejections reversed through artful diplomacy; 84,777 petitions signed from all over the country. This is but a sketch of the effort needed to get this Alzheimer’s stamp approved and printed.  

If you wonder how two women who had been wounded and hurt by a debilitating disease could make such an immense difference, meet Kathy Siggins and Lynda Everman. You’ll soon see, though, that this colossal effort is only the first phase of their endgame.

The Warriors: Lynda Everman, left, and KathySiggins storm Washington

But before sharing Kathy’s and Lynda’s stories, let me give you a quick rundown on this Alzheimer’s stamp. Officially it’s called a “semipostal” stamp, which means it’s a fundraising stamp. Its first-class rate currently is 65 cents, with approximately one dime (net of all costs) directed to Alzheimer’s research via the National Institutes of Health (NIH). 500-million stamps were printed for its two-year life. If there’s not enough interest, the Postal Service can pull the stamp before two years. It can be found at most post offices or at the online Postal Store or by calling toll free 800-782-6724.

At the stamp’s unveiling ceremony, Congressman Elijah Cummings (D-MD), who lost a neighbor and brother-in-law to Alzheimer’s, spoke directly to Kathy: “I want to thank you, Ms. Siggins. I know you worked a long time for this. It’s hard. I know it’s hard. You know what you did, don’t you? You took your pain and turned it into a passion to do a purpose. You took the pain you were feeling and then went on out and did things that will affect generations yet unborn.” Kathy was given a standing ovation. (You can see the ceremony by clicking here. Mr. Cummings’s address begins at 18:00 and his remarks to Kathy at 27:00.)

Congressman Elijah Cummings and Postmaster General Megan Brennan unveil the Alzheimer's stamp. Kathy Siggins and Lynda Everman stand to Ms. Brennan's left.

In the beginning there was only Kathy Siggins. She and her husband Gene lived a normal middle class life in Mount Airy, MD, an hour’s drive north of Washington, D.C. She and Gene met while both were working in the headquarters of the U.S. Postal Service (USPS), from which she resigned in 1983 to raise her children.

But in 1985 that “normal” life began to change. “That was when I noticed some changes in Gene,” says Kathy. He was 57. Three years later he took early retirement. But he wasn’t officially diagnosed for another two years, in 1990 when he was 62.

“We’d never heard the word Alzheimer’s before. As a caregiver, I felt helpless and lost; my life was consumed with caring for my husband.”

                  Kathy with Gene

While still caring for Gene, Kathy began to ease into advocacy, helping start a walk team in 1994. Since then, she personally has raised more than $92,000. “In 1997, when I started sharing our story, my son asked me, ‘Why do you want to open our lives to the public? Do you think one person can make a difference?’”

“I said something like, ‘I don’t know but if we don’t talk about it, no one will ever know what it’s like to live with this disease.’” Not long afterwards, Kathy made her first visit to Capitol Hill in 1998. “And I haven’t stopped since.”

Seven months after Gene’s death in January 1999, Kathy attended an advocacy forum that began to brainstorm on ways to raise awareness and serious money for Alzheimer’s. It was there that someone mentioned a stamp that was raising money for breast cancer research. “It didn’t sound right to me,” says Kathy. “I worked at the post office and had never heard of a stamp that was raising money for research.”

“I decided to check into it, and if true I wanted a stamp for Alzheimer’s.” The stamp for breast cancer research was dedicated in 1998, and to date it’s raised more than $87-million.  

She visited the USPS official who replaced Gene as the Director for Procurement. Kathy quickly learned that the Citizens Stamp Advisory Committee receives approximately 50,000 requests each year for dedicated stamps. Undaunted, she began a letter-writing campaign only to learn that the committee had already rejected a semipostal stamp. “I was told there’s not enough national interest in Alzheimer’s.”

“I’m going to show them that there is,” Kathy vowed, and started her petition campaign.  

Little did she realize that the road ahead would consume 18 frustrating years of her life. In a recent TV interview: “I was told ‘No’ an awful lot of times,” said this proud mother of eight and soon-to-be grandmother of 25. “And the disappointment…I went through a lot of disappointment each time people said ‘No.’”

In the meantime, Lynda Everman was living across the country working at the University of California-Irvine as a Human Resources Consultant. Her husband Richard also worked there as the Director of Applied New Technologies. In 1997 Richard was diagnosed with mild cognitive impairment (MCI), which puts one at an increased risk for Alzheimer’s. He was 57. “There’s nothing mild about it,” says Lynda.

         Lynda with Richard

All told, between caring for Richard and her father, who began showing signs of dementia in 1994, Lynda was a caregiver for 18 years. She had given no thought to being an advocate. She didn’t have time, plus “we both were introverts and very private people. I was intent on protecting Richard’s privacy and his dignity. We were moving through a situation that was too painful to address in public, and I wanted to do nothing that would add to his discomfort.”

As virtually every caregiver knows, to say this was a difficult period is an understatement. “When I think back to those years,” says Lynda, “I don’t think in terms of ‘caregiver burden.’ I think of a deep pervasive sadness.”

Subsequently, in late 2002, Lynda and Richard moved to Maryville, TN, south of Knoxville, and in 2009 he entered an assisted living facility (ALF). “By then it had become apparent to me that Alzheimer’s could claim one or both of our lives. I knew I could no longer sustain my level of care.”

“It was the most wrenching decision of my life. I basically had to move Richard ‘behind his back’ without telling him of my intentions.”

When Richard died several years later, Lynda says she posted their picture on Facebook with these words, “Rest in peace, my beloved husband, and know that I will not rest until there is a cure.”

“I intend to keep my promise.”

Not long after moving Richard into the ALF, Lynda slowly began to pivot from her shell of privacy to public advocacy. That was early 2010. Besides public speaking and taking trips to the state capitol, she also began her own campaign for an Alzheimer’s semipostal stamp.

Lynda was inspired by Susan G. Komen’s sister who almost singlehandedly started the breast cancer movement. So Lynda began a letter writing campaign to anyone she could think of. “I wrote to all the living Presidents and First Ladies, and to every celebrity I could think of. I incessantly promoted the breast cancer stamp as a model for an Alzheimer’s stamp. I didn’t know what I was doing, but I said to myself, ‘Oh well, I’ll just do it.’”

One day Lynda went to the local post office. “And being something of a smart aleck, I asked to buy an Alzheimer’s stamp. I knew full well that there was none available. To my surprise, the clerk said I could probably Google that in their ‘retired collection.’” She went online and found Kathy Siggins’s name associated with a short-lived commemorative stamp (non-fundraising) for Alzheimer’s, which had been issued in 2008. Importantly, she saw that Kathy also was pursuing a semipostal stamp.

Lynda found Kathy on Facebook and asked to be her ‘friend.’ That was April 2012. “I’m generally shy,” says Kathy, “and I don’t like to respond to such requests from people I don’t know.” But for some reason she did. “That turned out to be one of the best ‘friend requests’ I’ve ever had.”

They agreed to call each other that night. “Lynda and I immediately clicked. We talked for two hours. Finally, I met someone who had my passion!”

Kathy with a few of her 84,777 signed petitions

It was about this time that Lynda created the Help Stamp OUT Alzheimer’s Facebook community to gain visibility. (Twitter link @helpstampoutalz). “We needed the support of other individuals as well as the major advocacy organizations in order to make substantial progress.”

In 2013 Lynda visited Kathy. “We wrote and delivered 60 letters to members of the Bipartisan Congressional Task Force on Alzheimer's Disease and other influential committee members.”

May 2013: “Kathy and I blitzed the Capitol,” says Lynda, “hand delivering personal letters, telling anyone who would listen that we were caregivers who lost our husbands to Alzheimer’s and who were now advocating for increased funding for Alzheimer’s research and for a fundraising stamp.”

“Kathy even followed members of Congress into the elevators and stairwells so we could talk to them!”

Kathy calls herself the “tortoise” and Lynda the “energizer bunny.” Over the course of two decades, Kathy has learned every nook, cranny, and corner of influence in the halls of Congress, at the USPS headquarters, and at the NIH. (“I don’t know every nook and cranny,” Kathy says, correcting this writer.) Lynda, in addition to partnering with Kathy, is a founding member of three national networks, all under the umbrella of UsAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and ClergyAgainstAlzheimer’s. Kathy joined Lynda in these advocacy groups. Both women have remarried, Kathy to JD Brooks and Lynda to Don Wendorf.    

Along the way, Kathy and Lynda were guests on advocacy forums, webinars, and seminars. And they ultimately gained the support of the major national advocacy organizations, including the Alzheimer’s Association; the Alzheimer’s Foundation of America; the American Academy of Neurology; UsAgainstAlzheimer’s; and the National Active and Retired Federal Employees Association (NARFE).  

So what’s next for these two warriors?  

First, they say, they are doing everything in their power to promote this Alzheimer’s semipostal stamp.

“The sale of this stamp is so important,” says Kathy.

Here’s Lynda’s perspective on the stamp’s art design: It’s both appropriate and symbolic. It features an older woman with dementia, while a caregiver rests a hand on her shoulder. The clouds signify the confusion and challenges of Alzheimer’s and dementia while the sunlight signifies hope. Those of us who have experienced loved ones with dementia understand the juxtaposition of light and dark, despair and hope, helplessness and determination. It is our hope that by facing this disease together and advocating for better care, treatments, prevention, and a cure that all of us will have the strength to reach these goals.

The two believe the stamp’s success could greatly influence Congress to pass legislation that would extend the life of the semipostal for an additional six years, similar to the reauthorization of the breast cancer stamp. That would help deliver more research dollars while continuing to raise the public awareness of Alzheimer’s and its destructive aftermath.  

The effort and organization required to make that congressional bill succeed is another story unto itself. And Lynda and Kathy are well along that path.

When Kathy went public with her family’s story in 1997, the NIH budget for Alzheimer’s research was approximately $325-million; it’s now $1.4-billion. The “ask” today is for $2-billion, which researchers say is the minimum needed to accomplish the ambitious goals  of the National Plan to Address Alzheimer’s Disease,  one of those goals being “to prevent and effectively treat Alzheimer’s disease by 2025.”

I asked Kathy and Lynda what those reading this post could do.

Their response: “We would love for every advocate, caregiver, family member, and friend who has been touched by this disease to buy the Alzheimer’s stamp and to use it exclusively on all your mail. Purchase extra sheets to give as gifts to raise awareness that this disease is affecting one in every three U.S. families. There has been too much suffering by too many for too long. It’s only when we’re able to bring this conversation out of the shadows and into the national spotlight that we will be able to make the progress that is sorely needed toward better care, treatment, and prevention.”

Thank you, Lynda and Kathy, for sharing your inspiring stories and for taking the lead that you have. If interested, you can reach Lynda by emailing her at ldeverman@icloud.com, and Kathy at siggimax@mindspring.com. Subject line: Postage stamp.

And thanks to you who are reading this for doing what you’re able to do.

Let’s just do it!

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

Yesterday, Tuesday January 30th, Bill Gates was interviewed by Maria Shriver on NBC’s Today show. During the four-minute interview, Gates discussed what he wants to see done with the $100-million he’s donating to Alzheimer’s research and advocacy. Gates also revealed for the first time that a driving motive for his interest is his 92-year-old father who’s been diagnosed with Alzheimer’s. Ms. Shriver’s father, Sargent Shriver, died from the disease.

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

PS1 I’m sticking this Alzheimer’s stamp on all my personal and business mail.

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 WFTS-TV 28, ABC Action News Tampa Bay recently interviewed me for a five-minute segment. If interested, you can click here.

PS4 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

Alzheimer's Communication

I saw this recently on Facebook regarding best practices for interacting and conversing with those disabled by dementia and Alzheimer’s…

  Never ARGUE, instead AGREE

Never REASON, instead DIVERT

Never SHAME, instead DISTRACT

Never LECTURE, instead REASSURE

Never say “REMEMBER”, instead REMINISCE

Never say “I TOLD YOU”, instead REPEAT/REGROUP

Never say “YOU CAN’T”, instead do what THEY CAN

Never COMMAND/DEMAND, instead ASK/MODEL

Never CONDESCEND, instead ENCOURAGE

Never FORCE, instead REINFORCE

Nothing more needs to be said other than this is a keeper.

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

I’ve had friends occasionally ask how they can help fight Alzheimer’s financially. Of course there’s always your favorite Alzheimer’s charity. But if you haven’t heard, there’s now an inexpensive, highly effective way that became possible in December. And that’s the new Alzheimer’s postage stamp.

It costs 60 cents, about a dime more than the regular first class stamp. That dime goes to the National Institutes of Health (NIH) for Alzheimer’s research. Every little bit adds up, especially if the Post Office sells all 500-million stamps it printed. So put this stamp on all your bills and letters. I am.

An interesting story lies behind how this stamp came to be. I’ll share this with you soon.

I hope you had a good holiday season.  

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

Remembering the Forgotten

I hadn’t planned to send you another post until 2018. But I couldn’t let this one get by today, on the Eve of Christmas.

In my post ten days ago, I shared with you why Dr. Richard Morgan stepped into the world of Alzheimer’s.

Richard wrote this two days ago on UsAgainstAlzheimer’s… Christmas: A Time to Remember the Forgotten Among Us.

I think this is worth sharing today. I hope you do, too.

May this season be a time to slow down, catch our breath, look around, and find the meaning in all our relationships.

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

Why He Steps into the World of Alzheimer's

“In the final analysis, the experience of loving a person with dementia is a unique, mutual spiritual path. It is a spiritual path in which we learn to love generously, without constraint, without praise or thanks, sometimes despite a slap in the face. It leads us to our own freedom.”

That’s Dr. Richard L. Morgan, Ph.D., talking in his book No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia.

“Reaching this point spiritually is not easy,” this retired minister and counselor concludes. “It requires self-care; it does not ask for martyrdom.”

I caught up with Dr. Morgan—who co-authored this book with Dr. Jane Thibault of the University of Louisville’s School of Medicine—after learning of his long involvement with Alzheimer’s and dementia patients. Richard’s decades of experience resonates with key aspects of mine as I cared for my wife Martha over 17 years.    

        Dementia advocate Dr. Richard L. Morgan

As mentioned before, I’d always thought that illnesses and diseases were physical issues that needed to be treated as such. But when our family was flattened by Alzheimer’s, I began to understand that this insidious disease also is embedded with emotional, psychological, and spiritual issues that need to be recognized and dealt with however we can—as are other crises. Both victim and caregiver can be gripped by fear, guilt, bitterness, alienation, depression, and stigma. Not to mention that dark secret we caregivers carry that I shared in my last post.

Richard recalls the time he learned that dementia patients live in their own world. He was a nursing home chaplain then. “As I attempted a homily during a worship service, a woman blurted out: ‘This is the nearest to nothing I ever heard in my life,’ and promptly wheeled out of the chapel, followed by most of the residents. That soon ended my homilies for people with dementia.”

Richard spent most of his career as a Presbyterian pastor in Morganton, NC. In his spare time, he authored or co-authored 23 books. Retired at 62, he now lives with his wife in a continuing care community outside Pittsburgh, where he volunteers to help in the memory care unit, visiting 40 residents or so with Alzheimer’s or related dementia who “live in comparative isolation.” Now 89, Richard “feels God’s call to be their advocate and caregiver. And this calling has become my passion in my retirement years.” He’s also a co-founder of Clergy Against Alzheimer’s, a multi-faith network of UsAgainstAlzheimer’s. 

I’ve yet to read No Act of Love Is Ever Wasted (2009) but I’ve looked closely at enough excerpts to know it would have been a valuable resource were it available in 1997 when Martha was diagnosed. As a consequence, I’m making it available this week as a free book giveaway. More on that later.

I asked Richard what he’s learning from his experiences with dementia… 

Me: How has your approach with dementia patients changed over the years?
Richard: Back when I was a nursing home chaplain, I followed the staff’s concept of “reality” when they asked their residents such questions as What time is it? What’s the weather like? Who’s the President? What’s going on in the world? I failed to understand that people with dementia are NOT involved in the present; they are living in another world. The staff was locked into the medical model, and I went along with that although I tried to be a friendly visitor.

Now what works surprisingly well for me is being able to help people remember their past. I use pictures of their family, pictures from Reminisce magazine and from other places to help trigger their long-term memory. It was a year or so ago that I began to use Lester Potts’ art work with amazing results. People who never spoke or who talked in garbled language became lucid. 

Note: The late Lester Potts was a saw miller in rural Alabama who’d shown no talent or interest in art until after he was diagnosed with Alzheimer’s. Samples of Potts’s art are shown below; more can be seen at www.lesterslegacy.com. Richard co-authored the book ‘Treasure for Alzheimer’s’ to show ways in which dementia patients have reacted to these paintings. He shares his insights in a short YouTube conversation with Dr. Daniel Potts, the son of Lester and a distinguished neurologist and dementia advocate in Tuscaloosa.

(You may remember that a passion for art also blossomed in my wife, which prompted a resurgence of Martha’s confidence.)

CM: Humor arose from time to time when interacting with my wife. Have you encountered any in your relationships?
RM: Yes, one couple comes to mind. Both the husband and wife had dementia. The husband asked me to help him get a divorce, and his wife asked me to help her marry him.

CM: What’s been your toughest assignment?
RM: Even though I’d been a Hospice chaplain, being present when a resident was dying is the hardest.

CM: What do you see as the most important need for a person with dementia?
RM: To consistently visit them while being a friendly, non-anxious presence. This is especially true for residents whose families rarely if ever visit.

Also, from a spiritual point of view, it’s vital to connect in ways that acknowledge their souls (or spirits) are still present, even if their minds and verbal skills may not be. For example, if I’m with a person of Jewish heritage, I may share a Star of David or a Menorah. With a Christian, obviously the cross of Christ, or we may sing a well known hymn like Amazing Grace or The Old Rugged Cross.

CM: Are the emotional and spiritual issues of a patient and caregiver being addressed any more today than when you were first involved with dementia?
RM: I helped start a caregiver support group here nine years ago. I’ve listened to their heart-wrenching stories of the burden they bear for their loved ones who suffer from this disease. Caregivers tell me they’ve found legal and medical assistance, but nowhere can they find emotional and spiritual support.  

CM: What do you consider your worst mistake?
RM: Not following up on my visits. Since then, I’ve learned to be more intentional.

CM: From your experience, what are the most important things you would emphasize to a caregiver?
RM: First and foremost, take care of yourself. You can’t care for your loved one if you neglect your own needs. I know this mantra has been repeated so often it’s almost a cliché. But it’s nonetheless true. Whatever your situation, try to get help. You can’t do it by yourself. Try to enlist family members and friends in the care. It’s not always possible, but it is essential.

Finally, commit to listening patiently to your loved one. Even accept their anger and dismay in a loving way. I know this can be hard to do, but somehow, some way it’s vital to your loved one’s health and wellbeing—and to yours as a caregiver.

CM: Finally, can you sum up what you continue to learn from those with dementia?
RM: Live in the moment with them. Accept them where they are in their world, not yours. Never argue or contradict what they’re saying. Even use “therapeutic lying.” In other words, talk with them about whatever they want, whether you consider it to be true or not. Finally, this took me a while but I’ve come to understand that these persons are friends with souls, even if their minds are gone.

Thank you, Richard, for sharing with us your hard-won wealth of experience. There’s a richness of wisdom here that goes far beyond the issues of dementia.   

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

If you’d like to put your name into the hat for the free giveaway of Richard Morgan’s book No Act of Love Is Ever Wasted, here’s what to do:

• Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, December 14, and next Wednesday, December 20, 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, December 21. You will have 48 hours to respond to my email. If I don’t hear from you by then, someone else will be selected at random.
• For more detail, click Book Giveaway.

May each of you have a wonder-filled Hanukkah and Christmas season that transcends any and all our biases and fears. I’ll be taking a break through this season. In fact, I just saw our 6-year-old Olivia Grace in a Christmas pageant; I hadn’t realized that Jesus’ mother Mary hopped around so much. And I heard 9-year-old Nelson give a speech on “What’s So Unique about Redheads.” Unique indeed. We’ll reconnect in 2018. 

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.S.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon. Think about giving it to a friend or family member this season who’s burdened with a worrisome crisis.

From One Caregiver to Another

A recent headline stopped me cold: “For those caring for a loved one with Alzheimer’s, burnout is rampant.”  

The more I publicly share our family’s story, the more caregivers are on my mind. Their role and needs often are overwhelmed by the needs of their loved one. Whether they are caring for a loved one with Alzheimer’s or some other disabling crisis that threatens the fabric of their family’s existence.

We caregivers carry a dark secret: We often feel that we’re failing both the loved one we’re caring for and our families. We too often feel that we’re failures. And we don’t want to discuss it. Yet we can’t afford to keep this secret hidden away. For buying into such feelings can lead a caregiver to quick and complete burnout. 

This being Thanksgiving Day, it seems appropriate to share a different kind of post. It’s a song about being grateful despite any sense of failure. So it’s to fellow caregivers who’ve known such pain that I’m sharing this Leonard Cohen classic, Hallelujah. And it’s also to you who are helping care for your caregiver friends and their loved ones. And for you who want to understand your friend’s needs.

This song elicits the memory of burnout threat I experienced over 17 years, yet its message of hope, despite all, touches me even more. The threat of burnout may not be a memory for you; it may be a clear and present danger instead. If so, may Cohen stir you as he does me with Hallelujah.  

As I listen to Cohen’s Hallelujah, memories of what our young family lost long ago rekindle. Memories of perceived failures reignite. Memories of hope extinguished ice my heart.  

Yet...

Yet throughout the last two decades, a voice kept rising, kept calling me forward. It kept lifting me up, dusting me off, all the while whispering, “You’re doing good, Carlen. Let me carry you. Let me carry this. You are loved, Carlen. Be gentle on yourself.”    

Sometimes this voice went silent. But the memory of its encouragement was enough to get me through. Not unlike the way “hallelujah” carries Cohen through his success and his failure until he stands in the presence of his “Lord of Song,” offering the only thing he has to offer. 

This voice is what echoes in my memory as I let this song breathe through me, a song in which no amount of failure can choke the seed of joy, in which no amount of failure can silence the heart’s tongue from whispering in the dark, “Hallelujah.”

So this is my Thanksgiving gift to you … you who know of the pain I speak, whether it stems from Alzheimer’s or some other crisis. And if you find yourself crying as you let Cohen’s words stream through you, then cry fully. This song can be cathartic at the deepest level. It is for me as I also cry.

 Click here to listen > LEONARD COHEN'S 'HALLELUJAH'
(To read without watching and listening to Cohen can lose much of the meaning)

I've heard there was a secret chord
That David played, and it pleased the Lord
But you don't really care for music, do you?
It goes like this
The fourth, the fifth
The minor fall, the major lift
The baffled king composing Hallelujah

Hallelujah
Hallelujah
Hallelujah
Hallelujah

Your faith was strong but you needed proof
You saw her bathing on the roof
Her beauty and the moonlight overthrew you
She tied you to a kitchen chair
She broke your throne, and she cut your hair
And from your lips she drew the Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

Now, maybe there’s a God above
As for me all that I've ever learned from love
Is how to shoot someone who outdrew you
But it's not a cry that you hear at night,
And it is not some pilgrim who claims to have seen the light
No, it's a cold and it’s a very broken Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

Oh, people, I've been here before
I know this room, and I've walked this floor
This is … as you stood on it alone before I met you.
And I've seen your flag on the marble arch,
But your love is not some kind of victory march,
No, it's a cold and it is a very broken Hallelujah.

Hallelujah, Hallelujah
Hallelujah, Hallelujah

There was a time, you let me know
What's really going on below,
But now, now you never even show it to me, do you?
I remember when I moved in you,
And the Holy God was moving through,
And every single breath that we drew was Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

I’ve done my best, I know it wasn't much
I couldn't feel, so I learned to touch
I've told the truth, I didn't come here just to fool you
And even though it all went wrong
I'll stand right here before the Lord of Song
With nothing, nothing on my tongue but Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah

Have a good Thanksgiving today.

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. If you’d like to see my recent interview on a local PBS-TV station in which I share some of our family’s story, you can catch it here… http://www.wcte.org/one/

P.S.2 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.S.3 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

My Busy Three Weeks

Whew! I’m exhausted. I’ve just returned from being on the road for three-plus weeks. I spoke twice in Nashville, and once in my hometown of Cookeville, TN. Then I went to a conference in New York City. Here’s a quick recap…

First off, for my friends living in and around Cookeville...

When I was there last May, Becky Magura and I had a good conversation re. our family's story as told in my book, "A Path Revealed." President and CEO of Cookeville’s PBS station WCTE-TV (Channel 8), Becky decided to air our conversation in November in recognition of it being National Alzheimer's Month. If you're interested in seeing it, she tells me it will be on every Thursday this month, starting Nov. 2. Time: 8:30 pm. Based on my 30-year experience in print journalism, Becky is an A+ interviewer.

Also, there’s a link to the interview on WCTE's website if those of you living elsewhere care to see it … http://www.wcte.org/one/.

In Nashville, Brentwood United Methodist Church was kind enough to host two conversations, first in a Sunday School class and then on Monday when 80 or so from the Alzheimer’s community attended. In Cookeville, I spoke again to my late grandfather’s church class, the Backsliders at First United Methodist Church. I won’t bore you with the details of our story, which many of you are aware of by now.

Well received in both places was the handout of my previous post, Because That’s What Friends Do.   

Two days later I flew to New York to something called the National Publicity Summit. Bradley Communications in Philadelphia has staged 29 of these conferences. Attending were 116 media reps and 100 people like me wanting to leverage their stories. Many were authors and/or consultants. One fellow I met was promoting bottled dirt and rocks from Pike’s Peak. “It’s all legal,” he told me. The media there ranged from ABC News and the Today Show to a small radio station in rural Washington to freelancers for a variety of national publications.

This was quick-time speed dating. We each were given 2-1/2 minutes to hook the media rep’s attention. I talked with 50 or so. Maybe five were not good fits. Another five I put to sleep. I stepped outside the hotel four times over four days. I spent 30 years as a print journalist and editor, so this whole process was a bit awkward for me. I’m used to people coming to me to write about them and their businesses.  

All I need to do is follow up with the most fertile prospects. It’s time to stop writing now to do just that…reminding these reps who I am and what our story is about. I’ll keep you posted on how this experiment works out.

Thanks,
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.

Because That's What Friends Do

Caring for a loved one with Alzheimer’s can quickly overcome the caregiver. As you try to make your loved one safe, schedules can become a blur. What normally would take me ten minutes could mushroom into two hours. When you’re anxious, as I often was in the early years of our crisis, no detail at home or work was small. All loomed large. Too often I was forced into a corner, on the verge of meltdown.

From this kind of pressure was forged my Rule No. 1 for Caregivers: If you want to take good care of your loved one, you also need to take good care of yourself. It wasn’t that easy for me. Initially, I was either too shy about asking family and friends for help or too arrogant and dumb to think I needed help. Take your pick.   

I heard an idea earlier this year that I wish I’d been aware of twenty years ago. I’ve referred to it a few times in my blog posts. A Georgia Tech friend from long ago, Dr. Ed Anderson, told me about it when he shared his family’s story last February. He lives in Nashville.

About three years after Ed’s wife Bev was diagnosed with a form of dementia, she went grocery shopping and left her keys in the car. Coming out with an armload of groceries, she couldn’t find the car—it was stolen. So she proceeded to walk a mile or so home with groceries in tow. It was time for Bev to stop driving, Ed decided. But that also meant she’d be isolated at home.   

That’s when Bev’s good friend Karen Stevens stepped in. She talked with Ed about organizing a network of Bev’s friends who would take her on walks, go shopping, do lunch, go to movies, spend time together at home, and whatever else seemed practical and helpful. 

“Most of us worked in pairs,” says Karen. “It was easier to keep a conversation going and often more fun for Bev.”

Says Ed: “I don't know how I could have managed without the support of Karen and the rest of Bev’s friends. Knowing that she is with them while I'm at work has been priceless, giving me great peace of mind.” 

I discussed with Karen the model she set up for Bev and Ed so that I can pass it on to you. If you’re the exhausted caregiver of a loved one, I urge you to pay attention. If your friend’s family is struggling with Alzheimer’s or a similar crisis, figuring out how to help can be awkward. This idea can pay real dividends for all—victim, caregiver, family, and friends. If Karen’s model interests you, consider it a suggested template to be adapted to your own circumstance.

            Best friends forever, Bev Anderson and Karen Stevens

Had I heard about Karen’s model, I would have insisted on one thing: that all be friends of Martha with whom she was comfortable. As for who those friends could be—think book club, tennis or golf buddies, church circle, drinking and smack-talking buddies, whatever.

The best way to lay out Karen’s model is to ask her some questions and let her respond:

Me: Did you have trouble convincing Ed and Bev to do this?
Karen: No, it was a win-win for all. Actually, Bev wasn’t involved in the decision. The discussion centered on Ed’s desire to keep Bev’s friends involved as long as possible and in a fairly regular routine with what was familiar.

 What are the first steps you took?

1. I invited friends, neighbors, and Ed and his daughters to explore ideas for creating opportunities…as a friend, not as a caregiver.
2. We selected a contact person responsible for sending the schedule out each week to those helping. That turned out to be me, which I wanted.   
3. I constructed a template for daily/weekly visits. We initially worked in two-hour increments; since then, the time frame has reduced.

How selective were you in picking friends?
This was the easy part. There were no specific criteria. Bev’s close friends—neighbors, tennis buddies, and school teachers—were eager to participate. Bev was an avid tennis player. She also taught for many years in a private school. These were the natural starting places.

Did her friends need training on how to deal with someone in Bev’s condition?
No. But as the dementia progressed we would share with each other what seemed to be working and what wasn’t. Group members would ask how to handle a certain situation—how to redirect a conversation, react to a particular behavior, etc. I’m no expert, but after attending several Alzheimer’s and dementia groups and conferences, I realized that common sense was my friend. There were no set rules or steps to follow; just ‘being there’ was enough. A nod and a smile appeared to be worth a hundred instructions. After all, don’t we all want to be acknowledged?

Additional questions centered on whether leaving Bev alone for any length of time was OK, then we realized that even 15 minutes alone might spur a concern. Would she be safe inside her house?  Would she go for a walk in the neighborhood or possibly outside her familiar territory? She hasn’t been a ‘wanderer’ but that can probably change on a dime.

What type of activities did your team and Bev enjoy?
Walks around Radnor Lake park, at the mall (especially on rainy and cold days), and in the neighborhood. Also classes at the YMCA. Going to a movie and out to lunch. Blackberry picking and baking cookies. We’ve had to drop some of these as the dementia progressed.

Ed’s still working full-time as a physician. How do you keep him in the loop?
He and I usually talk on the weekend before I send out the schedule. He informs me of Bev’s upcoming appointments or times that he needs covered because of his own schedule. 

Does Bev have paid caregivers at home now?
Yes, so we also coordinate with them. And there are two excellent day care programs here in Nashville that Bev goes to regularly—one called Sunny Day that’s sponsored by local churches and another at an assisted living facility that’s something of a national model, called Abe’s Garden.

How long has your model been working? 
We’re starting our third year. Participating friends have changed, but we don’t have as many time slots to fill today as when we started.  

How much time did it take you to set this up? And to maintain it on a week-to-week basis?
Creating the template took several revisions. I wanted to make it user-friendly for the team, but also for me. The initial draft probably took an hour. I set it up on a word document but you can also use an Excel sheet. I probably spend a half-hour a week maintaining it, primarily coordinating with Ed.

What’s been the hardest part for you?
Relaying to Ed what others had experienced during their visit with Bev as well as what my own experiences have been. Some are good to talk about, others are difficult, such as body odor, argumentative, restless, rambling thoughts, etc. Emotionally it’s too hard for me to talk to Ed in person about my best friend, so we usually talk on the phone.

What’s been the easiest?
Creating the template. I’m a ‘chart maker’.

What would you do different if you were to start over?
Initially I’d ask more friends to participate so the time commitment for each would be less. Now it actually is less as the disease progressed. We'd started with about a dozen friends.

 Knowing what you know now, would you do this again?
Absolutely…what greater gift to my beloved ‘first friend in Nashville’ and to her family than to help in some small way? Being with her and knowing she would have been there for me in the same circumstance fills my thoughts. The smile on her face and the big hug she gives me are priceless. Through my tears, I know we’ve connected and loved each other unconditionally. I’m grateful for our time together and for her friendship.

Would you recommend this to others? 
Yes!  It’s a “gift that keeps on giving”—an invaluable present from one heart and soul to another.

Thank you, Karen.

I repeat myself: I wish I’d known of a program like this back in 1997 when Martha was diagnosed with Alzheimer’s. Martha’s friends and family helped early on but it was more random than regular. I have no doubt they would have helped further if I or one of Martha’s good friends had asked.

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.

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.

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

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.

>> 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.

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

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

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

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

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.

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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.”

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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

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, 7-8pm… Montreat 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

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:

• Meditation and the healing strength that arises from silence.
• The absolute need to forgive and to let our resentments go.
• The movement from fear to a deep, cathartic Love.

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

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

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)

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

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

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.

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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.