31 Lessons Learned from Persons Living with Dementia and Care Partners

The following is too good not to pass along. They are lessons that Dr. Daniel C. Potts says he has learned as a neurologist and care partner, both from his father, and from others who are living with dementia and their care partners. These were first compiled for a webinar for the Dementia Alliance International. I have drawn them from his blog ‘The Wooded Path.’ Says Dr. Potts: “I am thankful for opportunities to be in relationships with those who are living with dementia.”

1) Care partners are curators of another person’s museum of life.
2)
The innate value and dignity of human beings cannot be stolen by any condition or circumstance. To care with compassion, we must first believe that all people retain an incontrovertible identity.
3)
The beauty, vitality and relational energies inside the very one living with dementia can provide the inspiration for the care partner’s journey.

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4) We should love and honor persons in their current state, rather than holding them accountable to be what our egos need them to be.
5)
Allow persons living with dementia the opportunity to express themselves as completely as they can.
6)
Distractions must be minimized during interactions with persons who are living with dementia.
7) We should always look people in the eyes
when they are sharing their stories. We should realize that they may be sharing their stories without using words.
8)
One’s story needs to come out. When words fail, art, in all forms, can be a vehicle for expressing one’s story. Expressive arts and opportunities to explore creativity should be made available to everyone who is living with dementia.

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9) Nothing stirs the soul more than a feeling of belonging. We must do everything in our power to promote this kind of experience daily in people who are living with dementia.
10)
Always try to remember the silent struggles of others, which may lie buried beneath attitudes and behaviors that we don’t understand.
11)
Rich present-moment experiences open the pages of a person’s narrative, bolster identity, and bring a sense of continuity to a person’s existence.
12)
Laughter is essential. It is the great equalizer. But listening rivals laughter as the best medicine. Listening requires use of all senses, not just hearing.
13)
We must not take ourselves too seriously. Play is important at any age.
14)
It is essential to develop the practice of self-compassion.
15)
As care partners, we should act as if our lives are mirrors reflecting only the good and true image of personhood and none of the toxicity of dementia.
16)
There is no greater privilege than to help someone find his or her true voice, and no greater crime than to silence it.

Blue collage by Dr. Potts’ father

Blue collage by Dr. Potts’ father

17) Culture change cannot occur if the voices of those who are living with dementia are not heard.
18)
Don’t take it personally if someone living with dementia offends you or hurts your feelings.
19)
Empathy is the game changer in creating a culture of compassion in dementia care. Empathy increases when persons allow themselves to have meaningful relationships with those living with dementia. It is especially important to facilitate this process in young people.
20)
Though the requirements of care partnerships can sometimes bring out our worst, they also can bring out our best human qualities.
21)
Cultivate spiritual intentionality. Get past denial and resentment to acceptance and gratitude. Choose to look for opportunities to love more deeply in each moment of the ongoing care partnership.
22)
Reliance upon one’s faith and spirituality can provide a deeper meaning to the journey through dementia for everyone involved.
23)
Mindfulness is a very important practice to cultivate (for ones living with dementia, care partners and healthcare providers).
24)
Meaningful relationships can be maintained with persons living with dementia even in late stages. Presence is the most important characteristic of these relationships.

Dr. Potts and parents

Dr. Potts and parents

25) Brain pathology is not the only determinant of wellbeing; the relational qualities of one’s surroundings play a major role.
26)
The strength of the ego’s need to retain control often is proportional to the level of denial exhibited by a care partner.
27) It is much better to be kind than to be right.
When in doubt, default to kindness. When not in doubt, default to kindness.
28)
The need for generativity never goes away. Models of dementia care must address this need.
29)
We would do well to remember the things we learn from old people, young people, wounded people and disabled people.
30)
Life is about relationships. That doesn’t change if someone has dementia.
31)
Personhood, relationships, and empowerment promote living well.

Thank you, Dr. Potts, for continuing to share with us all. These lessons feel like they could apply to all we are in relation with, whether they have dementia or not. If you’d like to know more about him, you can visit this post I wrote last fall: What His Father Taught This Doctor About Alzheimer’s.

Until next time,
Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1 As usual, feel free to forward this post to your friends and family. In fact, please do. Dr. Potts’ insights are too good not to pass along.
PS2
September is World Alzheimer’s Month. Why not commemorate it by buying a sheet of the Alzheimer’s first-class stamps, or more, at 65 cents a stamp? The net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of July, over 7.1-million stamps have been sold, raising $953,000. Join me and thousands of others to Help Stamp Out Alzheimer’s.
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.

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Illuminating the Dark Heart of Dementia

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That tree.

That haggard and lonely tree, thrusting upward from its barren perch.

That life-thirsting tree, whispering to me from its encrusted roots: “Despite all…I am still here.”

The image of that tree is what compels me to write this. It resounds deep in the lost mines of my memory…to those moments when I heard Martha’s silent, disturbed presence whispering to me midway through our 17-year odyssey. She no longer could walk or talk or take care of herself. And yet I knew. I knew that despite all appearances, something deep within Martha was still here. All but hidden to my physical senses, life still stirred within my wife…“I am still here.”

This cover photo of Dementia-Friendly Worship is so reflective of the book’s foundational theme: No matter what stage of dementia a person may be in, early or advanced, communicative or not, no one—NO ONE—is ever an “empty shell.”

This perspective flies in the face of popular opinion—if the mind is gone, the person is gone. That was the common view when Martha was diagnosed with early onset Alzheimer’s in 1997, three weeks after turning fifty.

It still is today, but that may be changing somewhat. Dementia-Friendly Worship has the potential to help melt this icy stigma.

“… in spite of the cognitive and other limitations imposed by dementias, the essence of the person, their core, their soul, is still there, very much alive,” say this book’s senior editors, Lynda Everman and Dr. Don Wendorf, PsyD, retired psychologist. “It’s so easy to focus on what people with dementia can no longer do; it is of utmost importance—not to mention inspirational, transformative, and redemptive—to observe what they still can do. And are doing!

“But we have to be receptive to it,” says Don.

Cover design: Ian James Ross @sheffgraph

Cover design: Ian James Ross @sheffgraph

Dr. Daniel C. Potts, neurologist, puts it another way: “Of all the losses associated with dementia, I believe the greatest loss is that of relationship…What fuels the toxicity of this stigma, of this pulling away? I believe it is our failure to recognize and honor the inherent personhood of every human being, regardless of conditions or circumstances.”

For all these reasons and more, Don and Lynda say they originally preferred this book to be titled Souls Shine Forth. (But they discovered, as did I with my book, authors and editors don’t always have the last say.)

Based on all that I’ve read, this is a one-of-a-kind book. Its collection of insights is described as “a multi-faith handbook for chaplains, clergy, and faith communities.” It draws from 48 contributors/editors who come from a variety of traditions: Judaism, Islam, Christianity, Buddhism, Sikhism, and Native American.

Dementia, after all, is not prejudiced against any religion or faith or spiritual belief. Even agnostics and atheists are gazed upon with equal regard. This book’s contributors are all dementia advocates in one form or another. (I’m honored to be among this select group with a chapter titled “The Intimate Touch of Meditative Prayer.”)

“We use the word ‘faith’ broadly,” says Lynda. “This book is for anyone who believes in a power beyond themselves.” You may remember Lynda from an earlier post as one of the two catalysts for bringing the Alzheimer’s postal stamp to fruition. She and husband Don collaborated with UsAgainstAlzheimer’s to make Dementia-Friendly Worship a reality. (Lynda and Don found each other “through our caregiving experiences and advocacy.” In previous lives, the two served more than four decades between them as full- or part-time caregivers for family members in one stage of illness or another.)

Lynda Everman and Dr. Don Wendorf

Lynda Everman and Dr. Don Wendorf

Until recently, the influence of spiritual issues on those living with Alzheimer’s and dementia and their caregivers had rarely been part of the public conversation. Most research focused on finding a physical cure while the majority of books are caregiver guidebooks or memoirs—all important, of course.

So it took me awhile after Martha’s diagnosis to understand that a crisis like Alzheimer’s—any serious crisis really—can carry some heavy emotional and spiritual baggage, as I’ve discussed before. Stuff like resentments, fears, unforgiveness, depression, anxiety, and obsessions. Which I discovered had to be addressed as best we could if Martha, our children, and I wanted any sense of wholeness and wellbeing. I share this in my book, A Path Revealed, in which Alzheimer’s is not the focus, it’s the context. The focus is the spiritual odyssey that unfolded before us over 17 years, and continues today.

No doubt, Dementia-Friendly Worship is for chaplains, clergy, and faith communities as the subtitle indicates. But it’s also for the friends and family of those living with Alzheimer’s and dementia, their caregivers. That’s easy to see as you thumb through its pages. This is a book to be fully read, though not necessarily front to back. It’s to be read in bite-sized chunks rather than in one sitting. There’s too much to process here as you reflect on your own experiences. It’s also a book to be referred to often.

As Lynda urges: If you are by tradition, say, a Methodist, don’t just look for Methodist contributors—you’ll miss too many valuable experiences from all the traditions represented here. Topics with invaluable insights range from “A Prayer for Forgotten Souls” to “Worship Brainstorming”; from “Seeing the Spirit Through Dementia: a Sikh Dharma Perspective” to “The Sacred Circle of Life: Native Americans and Dementia”; and from “Devotions in the Respite Care Setting” to “African Americans’ Old Timers’ Day.”

A powerful section is “Voices of Persons Living with Dementia”. Listen to Greg O’Brien, an award-winning journalist: “And so it is with control. I’ve learned through my disease that one relinquishes control to gain control at the foot of a higher power. That’s the blessing of the disease…Many (spiritual leaders) don’t fully comprehend dementia; like most of us, the word literally scares the hell out of them, a biblical demon howling in the desert, or many perhaps opt for the simple drive-by—a smile, a handshake, ‘hi ya,’ a handoff of a scriptural verse, a reassuring word, or a blank stare—then off to work the flock at large…”

Or this by Jim Gulley, a former scientist with the Goddard Space Flight Center who also lives with Alzheimer’s: “There are many ways pastors and parishioners can be helpful to persons living with dementia and their families. Education is key…Most of us don’t know how to communicate with persons who have cognitive impairments…Rather than preach at us, my observation is that effective chaplains and clergy listen carefully. They actively listen…”   

An intriguing perspective is shared by Rev.Tim Langdell, both a Zen Buddhist priest and an ecumenical Catholic priest: “A key symptom of Alzheimer’s, although it isn’t always framed in this way, is that these patients are in a real sense more in the present moment than we usually are…they may delight in observing something…as if they are seeing it for the first time, over and over again. In a young child we often talk of this as being a ‘child’s sense of wonder.’ Perhaps we should see it the same way with our Alzheimer’s patients.”

I immediately recalled when Martha and I were waiting for a flight. We were among the last to board and Martha got tired of waiting. So she popped up and started jibber-jabbering with two puzzled attendants. I quickly explained our situation, at which point each attendant grabbed Martha and marched arm-in-arm with her down the runway to the plane, all while Martha was “talking” and laughing, enjoying every minute. I could only follow, shaking my head and smiling. And being grateful that these two attendants were so spontaneous in that moment.  

Martha’s self-portrait three years into Alzheimer’s (   She’d never painted before   )

Martha’s self-portrait three years into Alzheimer’s (She’d never painted before)

Worship should be WITH persons of dementia rather than FOR them, say United Methodist Bishop Ken Carder, now retired, and Norma Smith Sessions, an American Baptist. With such an approach “people with neuro-cognitive impairments not only are included, but their gifts are incorporated into the worship experience. This involves special sensitivity, inordinate flexibility, and spontaneous creativity among worship leaders.”

‘With’—not ‘for’—is a guiding principle for many of this book’s contributors. And it’s a meaningful guide for any care partner to follow: to be involved with your loved one as much as possible rather than always trying to do for them. It took me several years to get that and when I did, my interaction with Martha began to flow more easily. 

“Someone offering a spiritual connection to a patient would do well to engage their own spiritual centering—whether it be prayer, meditation, or chanting—prior to each meeting with the patient,” say Rev. Allison Draper, M.Div., and Rev. Dr. Grace Schireson, both Zen Buddhist. “From an open-minded, judgment-free view, one can more readily experience the patient’s level of well-being or anxiety…One can quietly observe non-verbal cues: changing facial expression, respiration rate, skin tone, voluntary and involuntary hand gestures, and tone of voice.”

Rev. Theresa M. Brion, Episcopalian, shares that same sensitivity with this short-hand version: “Be open. Be humble. Be adaptable. And definitely laugh!”

Muslim Chaplain Maria Khani offers this insight: “Throughout my years of chaplaincy working with inmates, I have encountered those who were incarcerated physically and those who were incarcerated physically and mentally. The most challenging…however, are those who have been incarcerated physically, mentally, and spiritually.”

“Those who struggle with dementia and those who are incarcerated live in a dark world. They are isolated from their loved ones and fear overwhelms them, making it even more difficult to cope with their surroundings…A prayer is a state of humility in the presence of the Lord…(and) is indeed powerful enough to reach souls, minds, and hearts in moments where nothing else can touch them.”

That echoes my visits with Martha at the Menorah Manor nursing home in St. Petersburg when she often would be agitated, curled up in a fetal position in her bed or chair, her arm tucked behind her neck. I would sit beside her, slip my hand into hers, and begin to whisper our phrase or mantra that we’d learned years earlier through our Christian meditative practice. More often than not, she would relax after a while and straighten her body, at times looking at me or around the room. Other times she fell asleep as a profound stillness often would fill Martha’s room.  

For the residents of Miami Jewish Health, Rabbi Israel de la Piedra says, “The prayers and songs comprise only one element of the weekly Shabbat service for those affected with dementia. In addition, a key component is the personal attention given to the residents by the rabbi. Before the service, the rabbi goes around the room greeting every person present…drawing heavily on issues that the rabbi knows are important to each resident and include frequent and loving, touching gestures.”

“There is a saying among those of us who work with persons of dementia: ‘Music is the last thing to go’, say Rev. David J. Fetterman, United Methodist, and Rev.Dr. Richard Morgan, Presbyterian Church, USA. “Music has the power to evoke memories…Helen was 86 and suffering from Alzheimer’s disease. She rarely spoke. Her short-term memory was around 30 seconds. While we were singing ‘Blessed Assurance’ she began to move her lips and then sing, clearly articulating the words. Caregivers were astonished to hear her sing. Apparently the music had reached beyond the dementia to her soul.”

Rabbi Cary D. Kozberg discusses how those with dementia and their caregivers can become strangers living among us. It’s vital to make them feel comfortable and loved, he says, quoting Leviticus 19:33-34: “If a stranger sojourns in your land, you shall do him no wrong…you shall love him as yourself, for you too were strangers once in the land of Egypt.”

What a strong resonance with our 17-year experience. You may have heard me describe why I call those years our odyssey rather than a journey. To me, “journey” sounds too tame and too planned for a crisis like Alzheimer’s. In the classical sense of “odyssey” you wake up one day unexpectedly in a foreign land. You’re lost, you’re hurt, and you’re confused. You want to get back home. You’ll go anywhere and do anything to get home. And when you do get home—IF you do—you find that home is not the same place as when you left. And you’re not the same person.

Bishop Ken Carder closes Dementia-Friendly Worship with this: “The expressions of love change, but the reality endures…(My wife) Linda no longer comprehends the word ‘love.’ Yet she expresses and responds to love! Language now fails her; but gentle touch, brushing her hair, a smile assures her of value and worth. She can no longer feed herself, so slowly placing food in her mouth becomes a sacrament of love. Love is not sentimentalism or warm fuzzy feelings. It is entering into the messiness, anguish, resistance, and hostility of the beloved with a non-anxious, gentle presence.”    

 ~~~~~~~~~~~~~~~~

These are a few of the many meaningful threads that can be drawn from this book, and some of the memories they in turn drew from me. The wisdom and hard-won insights that fill the pages of Dementia-Friendly Worship are priceless.

Any cleric would do well to have at least one copy of this book at the ready, whether they are in a church, a synagogue, a temple, an assisted living facility, a veteran’s facility, a nursing home, a prison, or a mission field. And every seminary would be smart to make this book required reading for its pastoral care studies. Finally, Dementia-Friendly Worship isn’t a typical caregiver’s guidebook, but it certainly would be a worthy complement to those you now rely on.

Thank you, UsAgainstAlzheimer’s and your editors and contributors, for realizing the value of this book and for making it a reality.

Don, Michael, Lynda

Don, Michael, Lynda

By the way, the cover photo is by Michael J. Powell, Lynda Everman’s late son, taken on a trip with Lynda and Don to Yosemite. “He was quite the outdoorsman and mountain climber…and photographer,” she says with more than a touch of pride.

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

PS1 September is World Alzheimer’s Month. You can commemorate it in at least two ways: (1)First, help your faith community leaders become aware of Dementia-Friendly Worship by forwarding this post to them. Or why not buy the book for them? If you or your organization would like to order multiple copies, email me (Subject line: Dementia-Friendly Worship) and I will send you the contact info. (Note: I have no financial interest in this book.) (2) Also, buy a sheet of the Alzheimer’s first-class stamps, or more, at 65 cents a stamp. The net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of July, over 7.1-million stamps have been sold, raising $953,000. Join me and thousands of others to Help Stamp Out Alzheimer’s.

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PS2 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon.

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PS3 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.  

Three Voices of Encouragement

Three people popped into my view last week with ideas that are too good not to pass along. If you’re caring for a loved one, you might find their thoughts good refreshers. The last thing you need as a caregiver is more advice from someone, like me, who doesn’t understand your special situation.

Nor do you need to hear yet again the tiresome but true cliché: “If you want to take good care of your loved one you also need to take good care of yourself.” If your experience is anything like mine was over our 17-year odyssey I too often couldn’t find time to play and exercise. Or maybe it was I didn’t make the time.  

That said, there are moments when it’s good to take a deep breath and look at what we’re doing and why, in which we ask ourselves, “Is there a different approach that might be better? What can I do with my loved one that will help us both at the same time? What family or friends are willing to help that I’ve been shy about calling?”

These three persons offer important ways, I think, of helping us do just that: 1) What can I do to avoid burnout? 2) Just what is the point of “faith” in the midst of a burning crisis like Alzheimer’s? 3) How can something like meditation, secular or religious, be of help when I can’t find enough time even to sleep?

Caregiver Burnout—A Few Good Coping Tips
Carol Bradley Bursack is an online friend and one of the best out there with insights for taking care of your loved ones. She’s a journalist by trade and a former multi-tasking caregiver by default, as well as by choice.

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Carol’s daily post is titled Minding Our Elders and she writes for Health Central under the pen name The Candid Caregiver. I was struck by the simplicity and depth of understanding of her recent post titled Caregiver Burnout: A Pervasive Problem. In essence, she’s saying none of us is perfect so we need to stop trying to be. In this post, she writes about determining your priorities, setting realistic boundaries, making adjustments as necessary, seeking support, and watching your own health.

I wish I’d found someone like Carol as a guide two decades ago when my wife Martha was diagnosed at age 50 with early onset Alzheimer’s.

Finding Faith in Alzheimer’s. Huh?
You may have come across Greg O’Brien and his story of living with Alzheimer’s. An award-winning journalist, he wrote a book titled On Pluto: Inside the Mind of Alzheimer’s. He continues to speak and write today as best he can, which is still quite articulate. His most recent column in Psychology Today is “Finding Faith in Alzheimer’s: As the brain atrophies in Alzheimer’s, the soul endures”.

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No, Greg is not trying to persuade you to believe in God or to believe a certain way. Rather, he’s describing how he’s learning “to speak and write through the heart, the place of the soul, when the mind fails”. Such practice helps him remain grounded in a Presence that he finds to be both within him and well beyond him.

When I began working on my book in 2014 I saw a number of caregiver guide books on the market, several quite good. So I decided to take a different tack. As a result Alzheimer’s is not the focus of our story; it’s the context. The focus of my book is the spiritual odyssey that unfolded before us over 17 years. It took me a while to understand, but I discovered that such a crisis—well really, any serious crisis—not only has practical day-to-day needs but is also weighed down with some heavy baggage—long embedded emotional and spiritual issues that must be addressed as best we can if we want any kind of wholeness and wellbeing. Deep-seated issues like resentments, fears, ill-defined anxiety, obsessions, and unending distractions. 

Our odyssey is a distant echo to what Greg experiences, who also has been diagnosed with prostate cancer, which he told NBC News that he’s choosing to leave untreated. “That’s my exit strategy.”

Greg’s essay is powerful, no matter what you believe.   

Can Meditation Help Prevent Cognitive Decline?
Interesting studies are coming to light that help document ways that we might forestall or prevent the onset of cognitive decline. My last post, To Test for Genetics, or Not?, touched on the provable benefits of ample aerobic exercise and a good diet.

Now comes this interview with Harvard neuroscientist Dr. Sara Lazaar on the Being Patient website. Dr. Lazaar focuses her work on “how meditation could transform the brain and whether it could even help prevent additional memory loss in adults living with MCI (Mild Cognitive Impairment) or early-stage Alzheimer’s”.

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Dr. Lazaar studies mostly secular forms of meditation rather than religious. And some conversations in this interview get too deep in the medical weeds for my understanding. But the underlying theme is that intentional meditation can contribute to the brain’s health and our wellbeing.  

Says Dr. Lazaar: “As you’re meditating, it’s sort of like physical exercise. As you activate a certain region, there’s going to be more branches and roots in that area, so it’s going to attract more branches and roots, and those are going to get strengthened over time. Just like the more you work out your arm muscles, the more you work a brain area…the more complex the connections are going to become, and it’s going to get bigger.”

You may remember that Martha and I began the practice of Christian meditation as described by the Benedictine monk, Father John Main. I have no idea what impact this had on Martha’s brain or mine. I do know that after a while our anxiety, which so overwhelmed us, began to diminish. Surprisingly, to me at least, I also began to feel a deepening intimacy with Martha that we’d not experienced in our 25 years of marriage. I sensed Martha did, too, even though she was unable to talk about it. And after she moved into a nursing home, I found this practice to be a wonderful connection between us when she was unable to walk or talk or take care of herself.

Thank you, Carol Bradley Bursack, Greg O’Brien, and Dr. Sara Lazaar.

I hope you find their thoughts as worthwhile as I did.    

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

PS1 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.  

PS2 An inexpensive way to support the end of this disease is to buy several sheets of the Alzheimer’s first-class stamps at 65 cents a stamp. The net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of June, over 6.9-million stamps have been sold, raising $935,000. Join me and thousands of others to Help Stamp Out Alzheimer’s.

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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.

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To Test for Genetics, or Not? Read On...

My wife had just turned 50 when she was diagnosed with early onset Alzheimer’s in 1997. Since then I’ve tracked untold blogs related to this disease while reading books and articles by the stack; I’ve listened to more than enough speakers; and I’ve heard an abundance of stories from friends and from those who follow my blog and have read my book. In other words, I’ve learned more about this disease than I can possibly remember.  

Yet only recently have I come across one of the most unusual books and stories of them all. The book’s title is descriptive though not unusual: Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s. What I find intriguing is the conversation that unfolds with Jamie Tyrone, an unsuspecting victim of a crudely administered genetic test, and Dr. Marwan Sabbagh, a neurologist and leading expert in Alzheimer’s diagnosis, treatment, and research, who’s the Executive Director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas.

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I talked with both authors after reading their book, in which Jamie weaves her inspiring,  shocking story through insightful chapters by Dr. Sabbagh (sah-BAH’). Jamie’s story is a meaningful, telltale read. Dr. Sabbagh’s sections are professional and compassionate; and equally important, they are readable for the average layman like me.

For example, he notes that “…in the near future we may be able to consider Alzheimer’s a treatable if not curable disease. That would be a huge change. But you don’t have to sit and wait for it to transpire. There are things you can do now, much as Jamie has done. The latest research is a clear call to action. You can engage in preventive strategies…And you can start today. Don’t wait until you or a loved one starts showing symptoms.”  

Going forward, I won’t always distinguish the source of quotes and comments by Jamie and Dr. Sabbagh as being either from our conversation or their book. (In working on this post, Jamie and I have become long-distance friends, thus my referencing her by her first name.)

Be Careful What You Ask For
In 2008 Jamie, who lives in the San Diego area, had received an online request from a large hospital system in California to participate in a genetic study that wanted to investigate what Jamie, a career nurse, describes as a “simple but important” question: “If you knew that you had a genetic risk toward certain diseases, would you change your lifestyle to help prevent them?”

For 15 years, Jamie had been struggling with symptoms similar to multiple sclerosis (MS) but was unable to attain a clear diagnosis. Innocently—ignorantly, she might say today—Jamie thought this test could help clarify her situation.  

The report back from this genetic test indicated no underlying issues with MS.

However.

The report did say she has a genetic structure that makes her a high risk for developing Alzheimer’s—in fact, 91 percent susceptible. 

“Two sentences jumped out at me,” says this nurse who knew little about the disease. “There is no known cure for Alzheimer’s.” “As of yet, there are no surefire strategies for preventing Alzheimer’s.”

“No prevention. No treatment. No cure. I was beginning to feel like I had been given a genetic death sentence.”

While reading about Jamie’s unfortunate encounter, a chill crept up my spine. After several attempts at seeking help and direction from a Dr. Prescott F. Leyland, who led this genetic study, Jamie received this email: “I’ve done enough for you. Please don’t call me again,” this prominent physician and researcher wrote. (Dr. Leyland is a fictionalized name; Jamie’s account is anything but fiction.)

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Jamie, 49 at the time, was left cold, to say the least. As were my wife Martha and I two decades ago when we were told she has early onset Alzheimer’s. If you remember our story, the doctor breaking this news to us made Dr. Spock of Star Trek seem warm and cuddly—he was stiff, officious, and cerebral. Our world had not been turned upside down; it imploded before us.

As for Jamie, she plunged into depression and feelings of isolation, intermingled with thoughts of suicide. This lasted at least three years. “I had been in healthy denial about my chance of getting Alzheimer’s due to my family history, but that coping mechanism was forever stolen from me.”

Jamie ultimately emerged from her “dark night of the soul” through the compassionate help of professionals at two major clinics in Phoenix and San Diego and through intense week-to-week emotional therapy (to the tune of $40,000 or more), out of which she was surprised to learn she was the victim of PTSD (post-traumatic stress disorder).

Step by step, Jamie grew into a recognized advocate for Alzheimer’s and clinical research, and an outspoken activist for improved education with genetic testing. (More about this in a moment.)

Hello. I’m Marwan…Marwan Sabbagh
Jamie and Dr. Sabbagh met when both were on a panel at the Banner Alzheimer’s Institute in Phoenix. After telling her “tale of genetic woe and the initial lack of support,” Dr. Sabbagh “put his hand over the microphone in order to share a private exchange of words. ‘Jamie, I’m so sorry…We were introduced to the audience, but I don’t think you and I have officially met’ he said smiling and extending his hand.”

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Hearing later that Jamie wanted to write a book about her story, Dr. Sabbagh indicated he would like to do one with her. He’d written several books plus numerous research papers.

“I was impressed by Jamie’s story,” says Dr. Sabbagh. “While she was not the first person I’d met” with such a high genetic risk, “it’s highly unusual, and I admired her courage and honesty in standing up in front of an audience to tell her story.” (Only two percent of the U.S. population carries not one but two of the high-risk genes as Jamie does. It’s known as ApoE4, and two of them are commonly called 4/4; she inherited one from each parent.)

“I thought a co-authored book would be unique,” Dr. Sabbagh says. “There could be real value in a duality of voice” with Jamie’s personal story interwoven with his professional insight. (This former magazine editor and publisher agrees. Occasionally, I give a worthwhile book away, and I’m doing that with this one. More on that later.)   

Why Dr. Sabbagh, 53, got into this field of practice and research is in itself unique. “I grew up in…a family of doctors. By the age of eight, I knew that I, too, wanted to be a physician. My dad encouraged me, giving me a copy of Grey’s Anatomy for my fourteenth birthday. Four years later, at age eighteen, I started doing research in Alzheimer’s.”

I laughed out loud. I couldn’t imagine reading a book like that at 14 or doing such research at 18. But that’s why, among other reasons, Dr. Sabbagh is a leading researcher and physician and I am not.

Just why was he attracted to this “old person’s” disease at such a young age? “The answer is simple: fear of growing old is what drove me.”

Dr. Sabbagh, whose practice is divided somewhat evenly between research and patient care, is more hopeful about the prospect of combatting Alzheimer’s, or AD, than was possible when my wife was diagnosed two decades ago, which I realize today were still the “dark ages” for AD research. Martha participated in an experimental drug trial, which proved unsuccessful; she did no more.

An Ounce of Prevention
Although 99 percent of the clinical trials have failed, prompting several major pharmaceutical firms to drop out, Dr. Sabbagh is more hopeful today than ever for several reasons. He notes that although we’ve known about AD for a hundred years, 95% of all we’ve learned has occurred only in the last 35 years. “It’s a relatively new disease from a research perspective.”

New ideas, he says, are moving us closer to better diagnoses and ways to manage or delay the symptoms. For instance, he’s confident that a blood test will be developed in the next few years that identifies a person’s propensity for AD. Also, “I routinely and vigorously encourage my patients to adopt a healthier lifestyle.” Two of his chapters describe the importance of a nutritious diet and ample exercise, physical and mental.

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Yet Dr. Sabbagh is equally realistic. He emphasizes: “I separate prevention from treatment. Changes in lifestyle can help people at risk of Alzheimer’s, but, sadly, lifestyle changes are less likely to improve the condition of people already experiencing cognitive impairment or dementia.”

Dr. Sabbagh points to more and more studies that substantiate the importance of exercise, nutrition, and stress management on brain health and on the deferment of symptoms of dementia and AD.

What’s not been conclusive is whether such lifestyle intervention is of any benefit to those with a high genetic risk of AD, such as Jamie. But that’s changing. Just last week (the week of July 15, 2019) evidence was presented at the Alzheimer’s Association International Conference in Los Angeles that the pursuit of a healthy lifestyle would make those at high risk less likely to develop the disease. In fact, by 32 percent. The study by the University of Exeter Medical School (England) followed nearly 200,000 persons 60 years of age and older over an eight-year period.    

Says Dr. Sabbagh, who attended this conference: “The data is now stronger that genetic risk can be buffered. Lifestyle interventions showed strong signals.”

I asked Jamie if she was adhering to Dr. Sabbagh’s recommendations on nutrition and exercise. “Yes, for the most part I am, but I’ve been a little bit lax. I’ve known that they might help but I haven’t known by how much.”

“But this conference is a game-changer for me,” says Jamie, who also was in attendance.  “Now that I know the potential quantitative impact, I’m going to get more serious.”

Other lifestyle studies presented at the conference revealed potentially even more impressive results for healthy persons worrying about dementia and AD later in life.

I’ll wrap this up with just a few more questions…

Dr. Sabbagh, as I reflect on Jamie’s encounter with Dr. Leyland and on the doctor breaking the news to my wife, what do you say to a person who comes to you worried about the possibility of Alzheimer’s? 
I never do this as a hit-and-run. I explain to my patient what I’m looking for: “I’m worried about X-Y-Z and here’s what I’m testing for. These tests will either reinforce my concerns or not.” If my concerns are verified, I don’t just give the person the diagnosis and send them on their way. I offer to be their guide all the way through their experience…both the person with the diagnosis and their caregiver. They are scared. They want to work with people who understand this disease and its consequences. We at the Cleveland Clinic offer programs that support both the patient and the caregiver.

Why did you decide to become an Alzheimer’s advocate, Jamie?
My father, who’d been diagnosed with Alzheimer’s, and I were included in a CNN documentary that came out in January 2011. (Two years after her genetic test results). That’s when I went public with my 4/4 condition. Seeing the documentary made clear to me that my future lay in being an advocate. 

I started to cry, Jamie, when you met researchers who connected with you as a vulnerable person rather than some research object. Is that why you became a self-described “lab rat”?
Finally, I now had allies in this struggle to regain my life and my sanity—and to find some purpose in it. I wanted to learn as much as I could about AD and my prospects, but at 49 I was too young for many studies. The Banner Institute, however, was performing a long-term study with the Mayo Clinic in which I could participate. For those three days at Banner, I finally felt as if I was making a difference. And personally, I felt I’d also taken a step out of my despair.

And what is this B.A.B.E.S. you started?
It stands for Beating Alzheimer’s By Embracing Science. Knowing that women are most affected by AD due to incidence and the heavy burden of caregiving, our mission is to harness the synergy of women in the fight against AD. It’s a foundation through which I raise money and awareness for the needs of research.

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This is another path I’ve taken to emerge from my depression. My therapist told me: “So basically, Jamie, you’ve got a choice between a dark road and a bright road.” With my first fundraiser I hadn’t felt that kind of joy in a long time. It seemed as if the darkness was lifting. Things were going in a positive way. I liked this bright path! I felt like my old Jamie. We’ve now raised over $175,000 since 2013—either through direct donations or the facilitation of money to other non-profits. By the way, men are more than welcome to be a B.A.B.E.S., too.

Genetic or DNA testing has become a commercial enterprise today with companies like 23andMe and Ancestry.com offering their services to millions. You see their commercials all over the internet and TV. What precautions do you have for anyone thinking of taking these tests?
Dr. Sabbagh:
When it comes to Alzheimer’s, the question of whether you would want to know your risk takes on new meaning after hearing Jamie’s story. I would summarize with these few points: 1) First of all, take such a test only after consulting with a genetic counselor; 2) Be mindful of the potential consequences, good and bad. Be informed and be aware; 3) Taking precaution does not mean for you to be dissuaded from testing; knowing your risks does not have to be gloom and doom; 4) You can use the results of such a test to help you prepare today via effective lifestyle changes in your diet and exercise and stress management.

(NOTE: Dr. Sabbagh goes into detail with this question in his chapters ‘The Genetic Puzzle of AD’ and ‘To Test or Not to Test’.)

Jamie: Marwan and I are on the same page. Educate yourself about genetic testing before submitting to one. Work with a genetic counselor. Understand that your genetic status becomes part of your medical record; it is now discoverable when applying for Life, Long Term Care, and Disability insurance. Younger adults even in their twenties are becoming more interested in these tests; these tests are NOT impulse buys. Understand that these companies make very little money from selling you a test; most of their profits comes from selling their data—i.e., your data—to research and pharmaceutical houses. Remember, every company is subject to data breaches no matter how stringent the safety measures. So beware what you permit the company to do with your information.

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One last question, Jamie. With all that you’ve been through, with all the people you’ve been able to help, if you could go back ten years, would you volunteer for that genetic test again?
Jamie:
No.

Thank you, Jamie and Dr. Sabbagh, for all you’re doing and for the experience and insight you bring to bear on this mushrooming crisis called Alzheimer’s.

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

As mentioned, I’m giving away one copy of Fighting for My Life. In its foreword, Dr. Michael Roizen, chief wellness officer at the Cleveland Clinic, says this: “If you want to understand the science behind Alzheimer’s and other forms of dementia, this book is for you. If you want to understand the choices you can make to delay or work toward preventing the onset of such dementia, this book is for you. And if you are interested in a powerful and emotional story of hope, this book is certainly for you.”

If you’d like to put your name into the hat for ‘Fighting for My Life’, here’s how:

  • Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Friday, July 26 and Saturday, July 27, 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 of you will be selected at random from those entering. I’ll send you a congratulatory email on Sunday, July 28. 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.

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

PS1 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.  

PS2 An inexpensive way to support the end of this disease is to buy several sheets of the Alzheimer’s first-class stamps at 65 cents a stamp. The net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of June, over 6.9-million stamps have been sold, raising $935,000. Join me and thousands of others to Help Stamp Out Alzheimer’s.

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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. I share our family’s 17-year odyssey of living with this disease. My high-energy wife Martha was 50 when diagnosed; I was 52. Our children were still in high school and college. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.

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Out of Deep Despair, a Seasoned Hope

“You can’t play the piano with clenched fists,” says Peter Rosenberger, whose rage still flares up unexpectedly after 33 years of caring for his wife.

“We caregivers often are on the edge of rage, so it’s important for us to find something to lose ourselves in. We all can do something, so do it. If we don’t, we’ll shrivel up.” A music major in college with a youthful dream of making it professionally, Peter as husband and caregiver loses himself today in his piano.

“I didn’t get the chance to evolve into something…to take on my adult identity” before marrying Gracie, Peter says. That was in 1986, when they were tender twenty-somethings. He’s been caring for Gracie ever since. “By any conventional sense we had no business getting married. I even doubt her doctors then understood the lifelong implications of her injuries.”

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My blog has shared the stories of many caregivers, most of them caring for loved ones living with Alzheimer’s or another form of dementia. Not Gracie, though, who’s a double amputee with medical issues stemming from a horrific car wreck in 1983, when she was 17. One November afternoon, after several sleepless nights studying, she drove alone from Nashville to Memphis along I-40 and fell asleep at the wheel before slamming into a concrete abutment.

“The only memory I have of the wreck was seeing both of my legs pushed over my right shoulder,” Gracie wrote in a post on WebMD. “The damage was catastrophic: My ankles were pulverized; every bone from the waist down was broken—one surgeon counted nearly 200 fractures; and several of my organs were damaged.”

Gracie has had two leg amputations below the knee, the first in 1991 after Parker was born and the second in 1995 after Grayson’s birth. To date, she’s undergone more than 80 operations and 150 smaller procedures while running through seven insurance companies and more than $10 million in medical bills. “Her doctor,” according to Peter, “says another operation could be her death.”

Gracie’s car in 1983

Gracie’s car in 1983

Peter didn’t understand the magnitude of Gracie’s problems until three years after their wedding. He describes this scene from 1989 in his book Hope for the Caregiver: It was the middle of the night and he was sitting outside Gracie’s hospital room after she experienced her first grand mal seizure. (She’s had four or five since.) He was staring at a pile of medical documents that were staring back at him.

“Not even her family had read what I now studied,” Peter writes. “Poring through doctors’ notes, I realized Gracie’s accident was unlike anything I imagined…I hung my head in grief and hopelessness. For the first time in my life, I felt a despair that would hover over me for the next dozen years—and one that still requires my vigilance to guard against.”

“Reading until dawn,” he continues, “I closed the massive folder and sadly noted that the cover stated ‘Volume 4 of 4’ … The events of that night forever altered me, along with the way I view life, hospitals, doctors, other people, my wife, and even God. Although immature, I was devoted. My sincere desire to care for this extraordinary woman led me to begin this journey. I never imagined, however, that the road would contain such suffering, loss, heartache, self-sacrifice, failure, and love.”

“That night in the hospital corridor, my heart sunk as I stared at a future full of relentless challenges with no expiration date. I felt trapped, but also understood the need for me to stay alive and healthy.”

“A difficult place for a 26-year-old man.”

And a difficult place even today for this 56-year-old man.

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Richard Rohr, a noted Franciscan friar and priest, wrote a book titled Falling Upward: A Spirituality of the Two Halves of Life, which is echoed in journalist David Brooks’s current title, The Second Mountain. The underlying theme of each is that great loss or failure can drive us in one of two directions: collapsing into fear and despair, even cynicism, or rising into a fullness of life, into a joy that’s been seasoned by such loss.

Gracie and Peter chose a path of seasoned hope and joy.

They have turned their continuous pain inside out. Each with their own style and talent is showing a way forward to those suffering from unimaginable pain and to fellow caregivers of almost any stripe.

For her part Gracie, who Peter describes as “a force of nature,” sings and shares her story wherever invited. And she and Peter established a foundation, Standing with Hope, to provide prosthetic limbs to fellow amputees in developing countries. They launched in Ghana, West Africa.

Gracie in Ghana

Gracie in Ghana

“Music has always been the great uniter for us,” says Peter. “We lose ourselves in our music; it gives us moments of complete rest. When Gracie sings it’s at a soul level, it’s something extraordinary.”

In this song and video co-written by Peter, I Can Only Hold You Now, Gracie is singing and he’s on the piano.

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Meanwhile, Peter has an uncanny knack of connecting with caregivers across a broad spectrum of issues. Or, as his buddy Jeff Foxworthy, the comedian, told Peter, “You have a gift to put very complex things on the bottom shelf for people.” Peter’s voice arises from a soul tempered by crisis upon crisis and from a spirit salted with humor and music.

“It took a long, long time and a lot of mistakes to get my voice. But now I can speak fluent Caregiving,” he tells me today with no hint of arrogance. “I now speak with great clarity and great specificity to my caregivers…Broad brush counseling does a caregiver no good” once they’ve been tossed into a ditch of volatile, conflicting emotions.

Peter launched a weekly radio program in 2013, “Hope for the Caregiver.” It’s broadcast weekly on WLAC 1510-AM in Nashville and is syndicated today on more than 200 stations. He bills it as “The Nation’s #1 Radio Show for Family Caregivers.” You can stream his program on his website or catch it on his Facebook page.

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“Armed only with a relentless persistence, a goofy sense of humor, a few ‘smarts,’ and a degree in music…I somehow keep the plates spinning. When it comes to ‘wanna-be’ stand-up comedians who play the piano and take care of a disabled wife for decades, I’m the best there is.”

I was Peter’s guest in early April, sharing our family’s story with his listeners.

Peter writes in his book, “After decades of acting like a superhero every time a medical crisis pops up (often daily), I’m learning that my role is to love my wife…do the best I can…and grow as a healthy individual to the best of my abilities.” Peter’s style is direct and simple. Of his book’s 40 chapters, few run over three pages. Yet the book is anything but simplistic, for a weathered voice of authority runs deep through its veins. He had to grow up fast.

“My book is written to my 22-year-old self. I was clueless. I’m speaking to that young guy…That night in the hospital so long ago, I wouldn’t have been able to process a ‘how-to’ manual that required even more of the precious resources I spent every day.”

“I needed (a guide that’s) simple, attainable, practical, and able to do ‘right now’…What does that look like? It looks like implementing easy-to-accomplish, consistent steps to address the six major ‘HELP ME’ impact areas affected by caregiving: Health. Emotions. Lifestyle. Profession. Money. Endurance.”

“Caregivers suffer from a loss of independence, a loss of identity, and isolation…I’ve found it wise to listen to people with scars. Their experience can help me avoid the injuries they’ve endured.”

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“Sadly, too many caregivers don’t know how to create a sustainable care-structure for themselves…Help is available, but caregivers must be willing to accept that help while tuning out the fear…that can consume us during highly stressful moments.”

Peter wraps up our conversation: “Amputations and orthopedics are not the challenges I have to deal with. Gracie is hurt at multiple levels. What do 35 years of anesthesia and painkillers do to a person? The reason I’m qualified (to talk to caregivers) is not because she’s a double amputee. It’s because of the pain and behavioral issues, stuff that keeps coming at you.”

“My hardest thing as a caregiver is to know what is mine and what is not mine, and too often I don’t. I’ve got to realize real quick when I’ve made a mess. Gracie and I have very little margin for error.”

Thank you, Peter, for sharing your time and insights with us, and for sharing your story and Gracie’s. I wish a book like yours was around in 1997, when my wife Martha was diagnosed with early onset Alzheimer’s at age 50.

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

On occasion, I give a book away. This is one of those occasions. In fact, I have three signed copies of Hope for the Caregiver to give away. If you’d like to put your name into the hat for one of these, 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, June 5, and Friday, June 7, by 12:00 Midnight EDT. Indicate that you would like to be included in the drawing and put in the subject line: BOOK GIVEAWAY.

  • Three persons will be selected at random from those entering. I’ll send you a congratulatory email on Saturday, June 8. 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.

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

PS1 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.

PS2 June is Alzheimer’s & Brain Awareness Month. An effective and inexpensive way to support the end of this disease is to buy several sheets of Alzheimer’s first-class stamps. By now you know that the net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of April, over 6.5-million stamps have been sold, raising $890,000. Join me and thousands of others to Help Stamp Out Alzheimer’s.

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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. I share our family’s 17-year odyssey of living with this disease. My high-energy wife Martha was 50 when diagnosed; I was 52. Our children were in high school and college. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.

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What the World Needs Now

Dr. Daniel C. Potts is a friend and neurologist with the Tuscaloosa, AL, Veteran’s Administration. He’s also a strong, public advocate for those living with Alzheimer’s or other forms of dementia and their caregivers. His late father Lester lived several years with Alzheimer’s. You may remember that I shared a post about Dr. Potts last October titled What His Father Taught This Doctor About Alzheimer’s.

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In his spare time, probably about 3 o’clock in the morning, Dr. Potts also is a writer and poet. You can find his work on his blog, The Wooded Path. He recently posted this poem, which I thought you might find of interest and meaningful.

What the World Needs Now

“I don’t need you to try and fix me,” he muttered,
“or tell me everything’s all right, because it’s not.
What I need is for you to be here.
I need you, not your medicine or advice.
Presence, not pat answers. Do you see?
Bearing with me. Listening. Hearing.
Trying to know how it feels here.
I need you to look at me, even if
I have to look away.
To be my mirror, reflecting everything but shame.
It’s dark here. But there must be light for reflecting, right?
I need you to bring light to this darkness.
You don’t have to be a hero, a winner, all put-together.
I need to hear you say my name. The name I’m named in my soul.
Whisper it to me. Will you do this? Do you know that name?
Whisper it again ’til you see me turning around. Looking up.
Please, you don’t need to bring me anything.
Empty hands are better to hold.
See? What I need for you to do
is bring God in here, into this empty, dimly lit room.
That’s right. God. The Light where God is.
And the mercy they say shows up in rooms like this.
Will you come and bring those things to me?
I hope only for this.”

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

Thank you for sharing so much of yourself, Danny, with so many others.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com  

PS 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.

One Caregiver's Story: 'Advocacy Saved My Life'

“I needed to flip the pain and refocus on making certain my experience wasn’t repeated by other families.”

“Our baby boomer generation needs to take on the challenge of curing Alzheimer’s as a legacy issue. It’s time we say, ‘Unacceptable!’”

“I don’t want my son caring for me the way I’ve taken care of my husband and now my mother; it destroys relationships. I don’t want to be remembered that way.”

Meryl Comer’s statements help explain why she’s emerged as a leading advocate in the fight against Alzheimer’s and dementia. I don’t know how she’s found the time or the energy: I’ve yet to come across anyone who’s cared for their loved ones at home as long as Meryl. She’s taken care of her husband for 22 years. And a decade ago her mother, now 98, moved in with them. Both were diagnosed with Alzheimer’s, he with early onset and she with the more classic later age. Meryl has been caring for them round-the-clock with a small, rotating team of nursing aides; she slows the financial bleed by pulling a solo, 12-hour shift.

(And I thought 17 years of caring for my wife Martha with early onset Alzheimer’s were long and hard; she was 50 at the time of diagnosis. The last six were in a nursing home, and I was most fortunate to afford daytime care during the first decade while I continued to edit and publish our regional magazine.)

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This disease, however, has not always subsumed the lives of Meryl and her husband. They were, you might say, a “power couple” in the Washington D.C. area. Meryl was an Emmy award-winning television journalist, and her husband, Dr. Harvey Gralnick, practiced medicine while doing research for over three decades at the National Institutes of Health, as the chief of hematology and oncology, until symptoms foreshadowing Alzheimer’s made it impossible to continue. It isn’t clear what Harvey loved more after Meryl and work—his wine, his clothes, his collection of ties, or his canary yellow Porsche 911, which he whipped through the streets as though he were in Le Mans. They were married in October 1979; it was Harvey’s third marriage and Meryl’s second. Each had a son separated in age by a decade, but it was her son who stepped up to help. In hindsight, Meryl recounts, “We put off a lot of living because we were too busy working.”

She saw telltale signs, as did Harvey’s colleagues, long before he was diagnosed with early onset in 1997, when he was 57. But she couldn’t figure out what was going on.

Nor could their doctors. “Harvey was misdiagnosed for years—stress; depression; Lyme’s disease; mad cow’s disease; pernicious anemia; you name it. Alzheimer’s never occurred to the doctors because Harvey was so young, physically fit, and accomplished. In fact the term ‘Alzheimer’s’ was rarely used more than two decades ago.”

But it all came to a head in a couple of public episodes. Meryl had driven Harvey to a conference where he was speaking to 400 other doctors. “He got lost in the middle of the speech, and the doctors in the audience started laughing. Harvey grew real quiet.” Afterwards, Harvey flew alone to Europe for a medical conference, despite Meryl’s objections. “I got a call from a doctor there that something was wrong. It took me two days to get Harvey back home. We went directly to a neurologist, where he was misdiagnosed again.” 

Harvey left the National Institutes of Health shortly afterwards. “The administration had begun to wean Harvey away from his duties until he had nothing left to do.”

He subsequently entered The Johns Hopkins Hospital under an assumed name. “I didn’t want his reputation ruined.” He was there for 2-1/2 months while Meryl tried to find him an assisted living facility (ALF). “But no one would take him. He was too young, too strong, and too dangerous. It took four orderlies to hold Harvey for a blood draw.” Moreover, the ALF cost $15,000 a month. They were without long-term care insurance so Meryl, in her prime and several years younger than Harvey, reluctantly decided to give up her TV career to care for him at home.

Like many caregivers, Meryl searched for any possible way out of this crisis. “I even went to Europe to get a med before it was FDA-approved in the U.S. It cost $200 a pill. I couldn’t buy many but got enough to test to see if it might work. It helped slightly, but not for long.

“When you live in the margins with a loved one who’s sick, you’ll try anything to relieve their suffering, won’t you?” 

This thumbnail sketch of their story offers insight into Meryl’s passionate drive that a cure be found now! for Alzheimer’s—both for the ones living with the disease and for their caregivers. Any family going through such stress would want a cure, but few persons are driven to the lengths of Meryl’s pursuit.

The advocate

The advocate

Since 2007, she has served as President and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative. (That’s the Geoffrey Beene, the clothing and fashion designer.) Meryl also is a founding member of the UsAgainstAlzheimer’s movement and a co-founder of its network offshoot, WomenAgainstAlzheimer’s. She’s been a driving force behind the group’s “A-LIST”. (More about that later). Meryl also serves as a co-Principal Investigator of the The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network, which works in conjunction with the Mayo Clinic. In that role, she helps steer their research to include not only the patient’s wellbeing but also the caregiver’s.

And if that weren’t enough to do, then this: In the midst of all her responsibilities, both personal and advocacy, Meryl somehow found the energy and focus to write an unflinching account of their experiences in Slow Dancing with a Stranger: Lost and Found  in the Age of Alzheimer’s. This New York Times bestseller was published by HarperOne in September 2014. (Her book’s net proceeds go to Alzheimer’s research.)

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Among Meryl’s many attributes is her candor. “Alzheimer’s has taken its toll on me. I’ve been isolated and lonely. I’ve lost my prime. And I’ve lost a lot of friends. I didn’t anticipate I was losing my life when the doctors told me the disease wouldn’t last too long. They just didn’t know.”

Moreover, she says, after years of care she began to experience symptoms similar to PTSD. “I probably get 4 to 4-1/2 hours of sleep a night…in bits and pieces.” (Meryl’s emphasis, not mine.)

Meryl never received help from Harvey’s medical friends. “His colleagues wouldn’t even walk into the house. ‘I’m too afraid to look at him,’ one doctor friend told me.”

“Public advocacy has saved my life,” says Meryl when asked why she’s poured so much of herself into these often time-conflicted roles.

“No matter what I do for my husband, the disease wins. So I decided to fight it at a different level. Advocacy has validated my experience—it energizes me.”

But Meryl’s advocacy is not just about her.

When Harvey was diagnosed two decades ago Alzheimer’s was “steeped in stigma,” she says in her book. “People did not like to discuss it.” But she says today, “People no longer can ignore it. It’s a global crisis now. The United States will soon become a ‘super-aging country’ in which half the population is 65 or older.”

This stigma, she says, is a major reason why half of those living with dementia or Alzheimer’s are not diagnosed, or are still misdiagnosed. 

She points to a study commissioned by Merrill Lynch in which “people cite Alzheimer’s as the scariest health condition of later life (54 percent)—more than cancer, strokes, heart disease, diabetes, and arthritis combined.” Alzheimer’s and dementia affect not only the persons living with it and their primary caregivers, but also their children and grandchildren. Their friends, too.

The care partner

The care partner

Two encounters transformed Meryl from an isolated, lonely caregiver to an engaged public advocate. First was the request by the trustee of the Geoffrey Beene Foundation to take on the paid position she’s had for the past dozen years. (That no longer exists, however, after the Beene company was sold last year. “I’ve got to figure out how to continue make a living.”)

Under Meryl’s direction, the Beene foundation launched a virtual study into caregiving’s long-term impact on caregivers. “We found that more than half the caregivers who responded were operating at less than 50 percent of what is considered a normal cognitive level.” Anecdotal information also indicates that many caregivers die before their loved ones.

“Caregivers have been overlooked for too long. They get so wrapped up in caring for their loved ones, they forget who they are.”

Her second transformation came a decade ago when she teamed up with George Vradenburg and his wife Trish, now deceased. “I worked with them to help start UsAgainstAlzheimer’s (founded in 2010). They were the ones with the dollars and political clout to make it happen. We became fast friends.” (Prior to Vradenburg’s full-time philanthropy, his legal career encompassed serving as chief counsel for CBS and AOL, and as a senior executive at AOL Time Warner and Fox Broadcasting.)

One of Meryl’s pet projects is the UsAgainstAlzheimer’s “A-LIST”. The volunteer members on this list comprise a first-of-its-kind community who live with, or are at risk for Alzheimer’s—as well as mild cognitive impairment, and other dementia. The group also includes care partners, both current and former. Meryl pushed the concept when it became apparent that clinical research organizations were unable to find enough trial participants in a timely manner.

Those who have signed up are surveyed on a confidential, voluntary basis about a variety of issues, such as patient-doctor relationships; the varying impacts on diverse communities; progressive stages of the diseases; caregiver health issues; and the use of prevalent technology. The A-LIST website states that it is a private, HIPAA-compliant database. Since its introduction in 2017, at least fifteen studies have been completed. Its most recent survey, as a matter of fact, helped prompt a conversation on CBS This Morning about the evolving attitudes over love and relationships among couples who live with Alzheimer’s. (Over 1,000 persons responded to this survey; its results can be found here.)

“The A-LIST is 6,000 strong right now,” Meryl says, “but we hope this year to move up to 10,000 volunteers.”

If you’re interested in learning more or signing up, click the A-LIST here. (As a former caregiver, I’ve signed on.)   

In closing I asked Meryl: Would you have done anything differently over these past 22 years?

“I don’t play those games with myself. I’m not bitter about my choices, especially seeing that external care is no better today than it was 20 years ago. I’ve known isolation because of this disease, but I’ve never said ‘woe is me.’ I’ve always looked forward. Not until I wrote my book did I take stock of what I’ve been through.”

How would you describe yourself today?

There was a pause.

“You never know what your strengths are until you’re in a crisis.”

What trait do you see in yourself that you didn’t realize two decades ago?

Another pause.

“My resiliency.”

Thank you, Meryl, for being willing to share your story, to describe your advocacy work, and to pass forward your hard-earned insights. Your story, your drive, and your caring encourage an untold number who seek ways through their own crises.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1 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.  

PS2 You may have seen this before, but if you haven’t it is well worth checking out. My friend Bob Beckett in Nashville has been caring for his wife for over 12 years now. He’s compiled the most comprehensive list of resources for dementia and Alzheimer’s I’ve seen to date. I wish I’d found something like this when my wife Martha was diagnosed in 1997.  

PS3 My apology if you’re tired of seeing me promote this Alzheimer’s stamp. But if you don’t know the story behind this stamp’s existence—it’s an interesting one—you can check it out here. By now you surely know that the net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of February, the 15th month since its issue, over 6-million stamps have been sold, raising $840,000. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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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. I share our family’s 17-year odyssey of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed; I was 52. Our children were in high school and college. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.

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"When You Took Care of Your Mom, You Stole My Joy"

“A doctor from Brazil called me to talk about ‘purpose.’ This doctor’s mother was caring for his father even though she was incapable of doing so. Yet she refused to let anyone else help. The doctor/son was more than frustrated with his mother until he hit on an idea: ‘Mom, we need some work done at my office but it’s very confidential. Only a family member can do this. Can you come to my office three days a week and work for us?’”

Linda Burhans, who consulted with this doctor, continues her story: “So the doctor says, ‘But, Mom, to do this we need someone to take care of Dad when you’re here.’ And the mother replied, ‘Oh, that’s no problem.’ So the doctor lined up a professional caregiver for those three days. His father is being well taken care of while his mother is feeling useful at his office.”

“The doctor’s parting words to me were, ‘I love you, Linda.’”

Linda lives in the Tampa Bay area and styles herself as “The Gal Who Cares for Caregivers.”

“I want to be the resource, the educator, and the shoulder for caregivers. And I want to help caregivers find a purpose for their loved ones,” Linda tells me.

“I’m really big on finding purpose. I talk a lot about it.”

She started thinking about helping other caregivers after a friend confronted her: “Linda, when you took care of your Mom, you stole my joy.”

“What do you mean?” asked Linda, puzzled.

“I wanted to help relieve you, but you wouldn’t let me!”

Linda Burhans gives caregiving talks throughout Tampa Bay; leads support groups; offers individual coaching to caregivers; has written two books, including Connecting Caregivers: Answers to the Questions You Didn’t Know You Needed to Ask; and produces a weekly hour-long radio program called Connecting Caregivers on WTAN AM-1340 and FM-106.1, which are live-streamed online and on her website. (Full disclosure: I’ve shared our family’s story twice on her program.) And this spring she starts a speaking gig with Arden Courts, which has 50 memory-care and other assisted-living communities around the country.

Linda (center) broadcasting from a local bowling alley

Linda (center) broadcasting from a local bowling alley

Linda hasn’t always been a caregiver’s caregiver. Before caring for her mother with stage IV colon cancer in 2006-2007, she’d done almost everything but. Self-taught in bookkeeping and finance while living in the New York area, she says she moved up the business ladder step-by-step, from payroll clerk until finally serving as chief financial officer for the Breitling luxury watch company’s U.S. division. From there she followed an entrepreneurial itch, starting three companies in New York and Tampa Bay, where she moved in 2000. That itch ultimately evolved into Linda’s mission to caregivers.

“Of all the situations I’ve encountered, the toughest ones I’ve seen are when caregivers isolate themselves and their loved ones and are unwilling to accept help. It’s very sad and it’s a dangerous situation. She calls it the ‘AAA Dilemma’: Caregivers won’t ask for help, they won’t accept help, and they don’t acknowledge their own needs.

With her New York accent, Linda peels off caregiver stories faster than I can write. So I’m going to let her share these stories about ways caregivers have found meaningful activities for their loved ones and how caregivers can seek help. If you’re an overworked, exhausted caregiver—as most of us often have been—the intent is to let these stories spark ideas that you may apply to your own situation. Some are simple, others a bit more complicated.

Here are more of Linda’s stories…

Story 1: Two caregivers in my support group were taking care of their mothers with dementia all day, every day. They hit on the idea of swapping out. One took care of both mothers on Tuesdays, and the other did the same on Thursdays. Then on Fridays all four went to lunch and the movies. These breaks were invaluable to the daughters.

Story 2: Another woman’s mother with dementia had been a seamstress. “How can I find something meaningful out of that experience?” the daughter wondered. Bingo. She bought 500 buttons of different sizes and colors and asked her mother to sort these buttons into the same size and color. It took her several days and then the daughter took the assortment and mixed them all up again, repeating the request. Her mother stayed engaged and focused while the daughter carved out precious time for herself.

Story 3: This one is about Linda Burhans and her mom, Jo McCauley, who was living with cancer and dementia. “What can I do to help?” her mother would often ask. Linda: “Would you help do the laundry, Mom?” “I don’t want to do that.” Linda: “Mom, could you do these dishes?” “I don’t want to do that either.” Finally, Linda asked herself, “What did Mom do most of her life that she enjoyed?”

She’d been a legal secretary and loved it. So Linda bought 500 envelopes and letterhead, wrote a fake letter and printed 500 fake address labels, asking her Mom to stuff them for her. She jumped at the idea and did so while watching ‘Wheel of Fortune.’ “It took Mom about a week, and then we repeated the process. Mom was so proud when she handed me the completed envelopes.” Soon, Linda hooked her mother up with a local chamber of commerce to help stuff its monthly newsletter. “This was the best $20 I ever spent.”

Linda interjects: “As caregivers, ask yourseves: What did your loved ones do that they really liked? Then figure out some task that would be similar.”

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“It’s also important,” she adds, “for a caregiver to draw up a list of what they really need, and ask friends and family to help with those.”           

Story 4: There’s the caregiver, for instance, who had only one item on her need-help list. “I’d like to nap in the afternoon from 2-4. That’s what I told a friend who asked how he might help.” The friend jumped at the chance and hung out with her husband one afternoon a week. That friend led to another. “Now I’m napping seven days a week. And my husband visits with seven different friends who had stopped coming to see him!”

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

Carlen talking: As Linda rattles off her stories, I’m taken back to the 17 years I was caring for my wife Martha with early onset Alzheimer’s, from 1997 to 2014. (She was 50 at the time of diagnosis.) I wish I’d thought more specifically about what Martha had loved to do in her prime. I knew she loved to dance and sing and play tennis, which we did occasionally. Martha surprisingly took to art, which she’d shown no interest in previously. Reflecting back, I wondered what activity Martha could have done consistently that echoed her earlier interests but didn’t have to involve me. I came up short on ideas.

But knowing now what I know, I would have asked our children and Martha’s best friends to help me with this question: What things would be meaningful and of interest for Martha today, given her limited skills?  Together, I’m sure we would have come up with something.

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

Story 5: Says this daughter: “Ever since Mom died, my Dad just sat in his chair, depressed. The doctor prescribed an anti-depressant, but even with that Dad continued to sit there paying little attention to anything.” Frustrated, she finally remembered her father had built big model ships as a youth and into early adulthood. But his hands had become too arthritic to build such ships, so she bought some wooden model cars that he could paint and assemble. She and her father then took the completed cars to nursery schools, child day cares, and elementary schools, even shipping some out of town.

“Our house became so joyful. Sometimes kids would Skype with him, or send him thank you notes.” By the time of his death, her father had painted, assembled, and given away 40 dozen model cars. “What I spent on those cars was cheap compared to what we would have paid for the anti-depressant meds.”

The caregiver’s caregiver

The caregiver’s caregiver

One final story: At a caregiver’s support group, one man asked Linda, “Did you ever hear that song ‘King of the Road?’ Not long after it came out, my wife wrote a song called ‘Queen of the House’ but never copyrighted it. Someone recorded it and sold that song.” At the time of this conversation, his wife was living in a nursing home, where she’d found a new boyfriend. As you might expect, the husband had a hard time accepting this newfound relationship.

Linda, along with the nursing home staff, decided to invite a local musician to entertain the residents. “We figured out a way for the boyfriend to be gone for the day. And we invited the couple’s children to come.” After a few songs, the musician asked for requests. Linda had planted someone to request ‘King of the Road.’ As he listened, the husband said, “Oh, I wish I could hear ‘Queen of the House’ again.”

The musician soon honored the husband’s request. Nodding off throughout, his wife quickly awoke when she heard her song. He looked at her; she looked at him. Then he invited his wife to dance, and they did, ever so slowly. They hugged and kissed for the longest time. The wife, who rarely talked and then only with a mumble, looked directly at Linda and in a clear voice said, “Thank you. I love you.”   

Linda closes our conversation with this thought: “Figuring out what can give your loved one purpose and meaning is so much better for everybody…caregivers and loved ones alike.”

Thank you, Linda, for sharing with us what you’ve found to work for yourself and for so many other caregivers.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1My 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. I share our family’s 17-year odyssey of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed, I was 52. Our children were in high school and college.

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

PS3 I pasted nearly 200 Alzheimer’s stamps on my holiday card mailing. The net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of December, 13 months into its circulation, 5.4-million stamps have been sold, raising $771,000. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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On Defusing the Stigma of Dementia

You may remember my post in late October about Dr. Daniel C. Potts, the Alabama neurologist whose practice and life were transformed through the experience of his father living with Alzheimer's.

Dr. Potts just posted these thoughts on learning to defuse the stigma that's so often associated with dementia, and with those who are "different." It's titled Reflections on Personhood. I encourage you to read it and share with others.

Dr. Potts with his mother and father

Dr. Potts with his mother and father

That's it from me for now. I hope 2019 is opening up for you in ways that are good and encouraging.

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.

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In the Face of Fear…Grace

These men and women stand among the bravest people I know. All live with Alzheimer’s or another dementia, a condition that’s growing in epidemic proportions and that’s continued to be stigmatized for too long by our culture. And the fear of it seems to be soaring even faster.

All of them decided to live as actively as they could rather than withdraw into seclusion.  

And all chose to step up as public advocates fighting this disease on their terms, not its—fighting for themselves and their families; and fighting for all who live with these disabilities, for their caregivers, and for future generations.

You know the late Glenn Campbell and his story, how he continued to perform until he could not. And you’re aware of Sandra Day O’Connor’s recent announcement that she now lives with dementia after having retired in 2006 from the U.S. Supreme Court to care for her husband with dementia. The others you may not know, although within the orbit of Alzheimer’s their stars burn bright. Greg O’Brien is a career journalist and investigative reporter in Cape Cod who shares what it’s like to live with this disease, both as a regular contributor on NPR and in his book On Pluto: Inside the Mind of Alzheimer’s. Dr. David Compton and I grew up in the same small Tennessee town; he’s a respected family practice doctor in the Knoxville area, now retired, who’s quite open about sharing his story, this being his most recent post in my blog. Brian LeBlanc also is an advocate who speaks to audiences large and small while writing his blog, Alzheimer’s: The Journey—I Have Alzheimer’s BUT It Doesn’t Have Me!   

And then there’s Rev. Dr. Cynthia Huling Hummel. You may remember her prayer for World Alzheimer’s Month that I posted in September. Our brief conversation intrigued me. I’ve encountered few people with her range of talent, interest, and energy.

Her memory loss at critical moments in her ministry was hard to accept, she says. And it took a long while to sift through the news that she may have the condition similar to her mother and uncle, both of whom lived and died with Alzheimer’s.

‘A Feather in Your Cap,’ one of Cynthia’s 30 dementia masks

‘A Feather in Your Cap,’ one of Cynthia’s 30 dementia masks

Yet what Cynthia has done—and still does in many instances—is impressive. A singer and guitarist inducted into the New York State Country Music Hall of Honor; an artist; author of four books; ordained pastor, now retired after 22 years; two advanced degrees; former Peace Corps volunteer; kayaker and long-distance swimmer; interviewed by NBC Nightly News; her story published two years ago in Woman’s Day magazine; adviser and speaker for the Alzheimer’s Association; appointed to the Department of Health and Human Services (HHS) Advisory Council on Alzheimer’s Research, Care, and Services; a mom of two kids now adults and last but not least, “a Grandma!”

“It’s always been on my heart to help others,” says this oldest of six siblings. “Our parents nudged each of us to get a part-time job and volunteer in the community. I was a Sunshine Girl in a local nursing home. Sort of like a candy-striper but in yellow.”

Cynthia graduated in 1976 with a degree in elementary education from Rutgers College, a member of its first class of women. She promptly volunteered for the Peace Corps in Jamaica, helping establish a special education program in Santa Cruz’s School of Hope. “That was amazing, life-changing work.”

Following that, Cynthia went to work in corporate America, spending 15 years with Dun & Bradstreet (D&B) as a technical communications specialist. “I loved that work and got three national awards for excellence in customer service.” She married Jon, and they had Emily and Will, now 36 and 34, respectively.

Cynthia with Will and Emily, 2014

Cynthia with Will and Emily, 2014

Meanwhile, as though Cynthia didn’t have enough to do, she decided to work on a Master of Divinity degree at the New Brunswick Theological Seminary in New Jersey. “My former pastor encouraged me to go to seminary because of my love of Christian education. When I toured the school I noticed a mug rack for students in the social hall. And in that moment I could ‘see’ my mug on that rack. I knew then that God was calling me to pastoral ministry.” 

“I spent five years working for that degree, and I wanted to quit more than a few times. I was still at D&B and was interning as a chaplain at a local hospital when Will got Lyme disease in the third grade. I would finish my hospital shift as chaplain and then go to his hospital. It was hard doing all this at the same time, but my associates at seminary wouldn’t let me quit. I’m glad they didn’t.”  

Cynthia was ordained in 1996 as a Presbyterian pastor, and she and her family moved to Lyons in western New York (pop. 5,000 and change) to assume a solo pastorate. Apparently not one to rest, she became chaplain for the Lyons Fire Department and later served on the board of the New York State Association of Fire Chaplains. She also joined her first band in 1999. “I’ve sung my whole life…Broadway show tunes, country, sacred music, folk songs, classic rock n’ roll. Patsy Cline’s my favorite country singer. Others I love are Julie Andrews, Aretha, Cher, Linda Ronstadt, Karen Carpenter, Kate Smith, Barbra Streisand—so many amazing women singers.”

Pastor Cynthia

Pastor Cynthia

Cynthia clearly is ambitious in an admirable sense, for while serving the church in Lyons she decided to seek a doctorate with Chicago’s McCormick Theological Seminary.  

But while pursuing those studies, something changed.  

“When I was preparing to defend my thesis, signs that something may be wrong began to appear.” It was the spring of 2003. “Most people in a doctoral program can rattle off the books they’ve read,” she told Woman’s Day, “but all I could tell you was the first three courses I’d taken. I could name only one of my professors. I didn’t remember any of my fellow students…It was terrifying because I was in the middle of this program that I’d worked so hard to complete.”  

Cynthia sought out several doctors to determine the problem, but none of their diagnoses made sense—work-related stress, a recent head injury, menopause. “Because I was young,” she told Woman’s Day, “no one suspected Alzheimer’s disease.” She was 49 years old. 

After earning her doctorate and working in Lyons for a decade, she and her family moved to Waverly, an even smaller village in western New York, to assume a solo pastorate in the Presbyterian church. That was 2007.  

Then heartache struck the next year. After 30 years of marriage, husband Jon decided “to set out on a new chapter in his life. This was so distressing,” Cynthia says. “Jon’s a good man. It’s hard being a pastor, but it’s also hard being the spouse of a pastor.” They are in touch regularly, she says, and see each other at family gatherings.

Finally in 2011—eight long years after the first warning signs and after so many false diagnoses—Cynthia was told she has “amnestic mild cognitive impairment,” or aMCI, which often is a prelude to Alzheimer’s. “I was relieved in some ways to have an answer, but it was still very hard.”

The first person she told was a band buddy at rehearsal. “When I told my church board someone piped up, ‘Well…it all makes sense now.’ That hurt me so; I thought I’d been covering up my cognitive difficulties pretty well.” Cynthia stepped down as pastor, after which she wrote a column in the local paper explaining why.

The many masks of dementia

The many masks of dementia

She moved out of the church’s manse, or house, and out of town, up I-86 to nearby Elmira, where she knew only one person. “I had to get out of Waverly. How do you define yourself in a community when you no longer know who you are?”  

“I felt so worthless and sad. I was in the prime of my life, and everything was falling apart. I lost my ministry, my identity, and my purpose. I didn't know who I was. It was just awful. I was angry at myself. Angry at God. And I was desperately lonely.” By this time, her adult son and daughter had started their own lives elsewhere.  

Months dragged by.  

“I saw an ad in the Elmira paper for an eight-week class on Alzheimer’s. The first session I sat in my car and cried; I didn’t want to go in. I was hoping to make some close friends but that didn’t happen. I was the only one without a care partner.” 

Cynthia soon happened on a church that offered a free meal. “Oh, maybe I can meet someone here,” she remembers thinking. “‘What’s your name and zip code?’ the lady at the door asked without looking up and directed me to a table where I sat down by myself. No one came over to sit with me or invited me to join them. I saw some church members laughing and talking, having fun together. I finished eating and left.” 

About this time, Cynthia discovered Elmira College, a private school founded in 1855, which offered continuing education courses for free to those 65 and over. “I’m not 65 yet,” she told the dean, “but I’ve been diagnosed with a dementia. Can I audit any of your classes?” The dean exclaimed, “Welcome to Elmira College!”  

Cynthia will audit her 36th class starting January 2019. “I’ve taken everything from French to Ice Skating, from Medical Ethics to Art History and Children’s Literature.” 

“I usually don’t remember squat, but I love it,” she told Woman’s Day. “I’m incredibly blessed to be able to sit in on such interesting classes,” she shares with me now. That apparently was a key opening for her new life.  

Another opening was a person who helped guide her through this crisis. “I’m deeply grateful for my spiritual counselor who helped me change my perspective—from sadness to feeling more at peace. I began to look at what was happening through the lens of faith, through remembering God’s promises, such as: ‘For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.’” (She quotes Jeremiah 29:11) 

“My change in outlook has been gradual, like a flower unfolding.”

Kayaking on Keuka Lake

Kayaking on Keuka Lake

“Whenever I focused on ‘poor me,’ I often remembered my mother’s solid wisdom: ‘No one ever promised you a rose garden’ and ‘Into every life a little rain must fall.’”  

“When we focus on ourselves and our troubles, that’s when feelings of worthlessness fester. When we wallow in grief, we become isolated and get stuck.”  

“Once I started to focus on what I could still do, instead of on the things I could no longer do, I was able to shift gears.”  

And shift gears she has.  

Two years ago Cynthia was told that her condition has progressed to early-stage Alzheimer’s. Yet today her voice fills our phone conversation with joy and hope: “God has given me a new ministry—to those who live with Alzheimer’s and dementia as well as to their care partners.” 

“My ministry now is to help others reframe their experiences. Sharing stories is really important. It helps people to connect and remember a more positive story in their lives.”

Wrapping up a swim across Cayuga Lake that helped Hospicare raise $370,000

Wrapping up a swim across Cayuga Lake that helped Hospicare raise $370,000

Volunteering is “the best medicine there is.” Cynthia and a friend recently started Faithful Friends Respite Care, in which they give caregivers a much-needed break. Cynthia also leads an Alzheimer’s support group.  

Physical activity is vital, says this reconfigured pastor. Social engagement is, too. So Cynthia swims several times a week in the local pool and long-distance in a nearby lake, weather permitting. She also kayaks on the Chemung River and the nearby Finger Lakes. She started a kayaking club and named it “Rolling on a River.” 

“I’m connected to three different arts and dementia groups.” It’s out of such a group that Cynthia decided to make a mask describing what it’s like to live with dementia. But dementia doesn’t have just one face. So that one mask evolved into 30, which she published in her book Unmasking Alzheimer’s: The Memories Behind the Masks

One example is the mask shown above, ‘A Feather in Your Cap.’ “Dementia doesn’t care who you are and what you may have achieved. It doesn’t care how many ‘feathers you have in your cap’—whether you are rich or poor, whether you dropped out of high school or have advanced degrees.” 

In addition to all these activities, “I still preach a lot as a substitute.” Cynthia had written out all her sermons so she just picks one and talks from that. (The churches know of her condition in advance.) “One Sunday I went to read from a Gospel and I couldn’t find it. A lady opened a Bible and handed it to me, pointing to the passage: ‘We’re right here, Pastor.’”  

“When church becomes a place of worry instead of a place of worship, someone needs to gently tell me. Then I’ll know it’s time to stop preaching and look for other ways to serve.”

Country Magic at its finest

Country Magic at its finest

Now 65, Cynthia and the Country Magic band play twice a month at nursing homes plus other gigs for benefits and banquets. “I have so much fun with the band. I love to sing.”  

One more insight, but hardly Cynthia’s last one: “I also hold onto the hope that researchers will find a treatment, an intervention, a cure. But it's not enough for me to pray for these things and sit back, waiting for something to happen. I’ve dedicated my life to being part of a cure and that's one reason I’m so happy to participate in an Alzheimer's clinical trial.”     

“In fact, when the time comes I’ve agreed to donate my brain to research; I carry such a card in my wallet. And January 6-10, I’m heading back to the University of Rochester for a battery of tests—PET scans, MRI’s, neuropsychological tests, and a spinal tap. Year 9!” 

~~~~~~~~~~~~~~~~~  

Thank you, Cynthia, for sharing your insights and story. You make me—and I suspect more than a few others—misty-eyed with joy and hope. May you and all reading this have a wonderful holiday, celebrating your faith in ways replete with meaning.

Also, I appreciate Guideposts magazine picking up a slice of our story in its recent December issue.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1My 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. I share our family’s 17-year odyssey of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed, I was 52. Our children were in high school and college.

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 bought 200 Alzheimer’s stamps for my holiday card mailing. The net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of November, the stamp’s first full year on the market, 5.1-million stamps were sold, raising $726,000. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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Can We Talk? That's Me at 73 Asking Me at 52

“Have you ever seen our smart and sassy Martha retreat into her shadow? Have you seen her confidence evaporate? Her bright blue eyes turn dull and gray? You have no idea what’s coming, do you?”

That’s me, now 73, talking with me at 52 shortly before my wife Martha was diagnosed with early onset Alzheimer’s. The year was 1997. She was 50 and our three children were still in high school and college. Martha had been active for years in local politics and civic activities and I was heading into my 15th year publishing our business magazine that covered the Tampa Bay area.

Martha running for the Florida state legislature in 1996, a year before she was diagnosed

Martha running for the Florida state legislature in 1996, a year before she was diagnosed

I had a similar talk with myself a couple of years ago. And it feels right during this season of gifts and thanksgiving to have another one, reflecting on what I’ve learned since living with this insidious disease for 17 years. During our crisis, I didn’t understand nearly as much as I do now. Back then, I was just trying to get us through the day. Even while writing my book, A Path Revealed, I didn’t have as full a perspective as I do today: I’ve had the privilege of listening to the stories of many others. And I’ve shared our story with scores of church and support groups; with book clubs; on this blog; and been interviewed by a variety of media, including radio, TV, print, and online.

Me@52: Do you remember your first reaction when hit with the news, Carlen?
Me@73:
Oh yeah. Our world wasn’t turned upside down; it imploded right before our eyes. I was scared and so was Martha, more than scared. We were desperate. I began to run around in circles, searching for answers as best I could, reading books, looking online, asking questions, starting a journal to store all that hit me from so many angles. There’s much better information today, but there’s still no medical solution to Alzheimer’s.    

Me@52: What stands out to you after all these years?
Me@73:
The best advice I received came from a stranger: “Carlen, be gentle on yourself.” I was on a path with few answers and many obstacles, he told me. “Some dangerous.” Be gentle on yourself sounded so easy at the time. But on more than a few occasions I can be a “perfectionist” who often gets frustrated. Martha would tell you that if she could. Yet there’s no way to be a perfect caregiver. There’s no perfect way to respond to the needs and emotions that can change so abruptly. There’s no perfect formula.  

Our crisis forced me to let go of my resentments as quickly as possible, to forgive Martha and myself often. Not because of some “religious” impulse, but rather to help restore our emotional wellbeing. Martha and I both learned the hard way that carrying resentments not only can hurt others but also can be self-destructive.

I share more about being gentle in this short video clip by Guideposts magazine, which published a slice of our story in its December 2018 issue. As I reflect on it, I see that much of what I’m still learning grows out of this trait of gentleness.

Me@52: What do you mean?
Me@73:
I see that my encounters with mentors during our crisis were organic rather than linear and random, as I’d previously thought. What I learned from one encounter laid the groundwork for yet another, and then that for another. And all emerged from this ground of gentleness—gentleness toward myself, toward Martha, our children, and toward those who rebuffed Martha when she acted oddly. 

Slowly I learned: You’ve got to step into Martha’s world now, Carlen. Stop! Look! Listen! Stop what you’re doing and be attentive. Look for the little gifts and appreciate them. Dance and sing when Martha wants to dance and sing.

All so easy to say, often so hard to do. Yet vital in negotiating these 17 years.

Me@52: Our visit with Sister Elaine Prevallet was significant, wasn’t it?
Me@73:
Sure was. Martha and I were hesitant about visiting her, yet expectant. Neither of us had retreated to a monastic community. Sr. Elaine was the retreat director at the Sisters of Loretto motherhouse in Kentucky. We went shortly after Martha’s diagnosis at the urging of our friend Lacy Harwell, a retired Presbyterian minister. “I’ve sent a lot of friends in crisis to Elaine,” he told us. “She has the finest gift of discernment I’ve seen. I don’t know what you’ll get from your visit, but I’m sure it will be meaningful.”

Sisters of Loretto grounds

Sisters of Loretto grounds

Me@52: I remember well when she told Martha and me that we might want to look into the “difference between willfulness and willingness.” We were clueless as to what she meant.
Me@73:
Yes, between Martha’s political involvements and my running our magazine (or it running me)…if any activities are “willful” and headstrong, these sure are. Sr. Elaine saw something in us that we both were blind to. Even now I find myself trying to force solutions when none is obvious. But I do find it easier today to take a deep breath, step back, and relax.

Sr. Elaine also suggested we “check out meditation” but didn’t elaborate. I’d read a book of Thomas Merton’s and was curious about the practice. But I didn’t know anyone—Protestant, Catholic, or otherwise—who practiced meditation. I was surprised when Lacy, the Presbyterian pastor, pointed us to a Benedictine monk named Father John Main. I ordered a set of his tapes, In the Beginning, and his book Word into Silence, and Martha and I began to meditate sitting side by side, holding hands, quietly repeating the word or mantra we’d selected. There was nothing magical about it, but over time my anxiety subsided. Martha’s, too. She acted and looked more relaxed. What did surprise me was the intimacy that unfolded between us, an unspoken intimacy that we hadn’t experienced in the 25 years of our marriage. I continue this meditative prayer practice today.

Me@52: Do you still remember Sr. Elaine’s parting words to Martha and me?
Me@73:
Oh yeah, they’re engraved on my heart: “Your main calling at this time is to trust that you belong to God and not to yourselves. And to deepen your love for God and between yourselves.”

This insight of hers forms the very ground from which gentleness springs, something I didn’t understand at the time. Her words became the undercurrent of hope through the shifting terrain of our crisis, through all that we had to endure.   

We caregivers often carry a dark secret. I too often felt I was a failure. I was failing Martha, I was failing our children, and I was failing myself. The guilt that comes from this sense of failure more than anything makes us susceptible to burnout. While the latest statistics show Alzheimer’s to be growing in epidemic proportions, the burnout rate among those caring for a loved one is rampant.

Be gentle on yourself, Carlen.

After being charred once too often, I finally realized the need to ask for help and to accept help when it was offered. A good example is the time our sister-in-law KK encouraged Martha to join her in a water-color painting class. That changed the dynamic at home as Martha regained her confidence and became re-engaged. If you haven’t seen her art, you can see some by clicking here.

Martha’s ‘Feeding the Ducks’

Martha’s ‘Feeding the Ducks’

Deep into writing my book, this suddenly dawned on me: All my life I’d thought of illness and disease as being a physical issue only that needed to be treated as such. Here, take this pill. Or, We need to do this surgery or that. But by living with Alzheimer’s, I became aware that illnesses and diseases are also embedded with emotional, psychological, and spiritual issues that need to be realized and dealt with as best we can. Issues like fear, guilt, stress, depression, stigma, anxiety, and long-standing resentment. You name it, Martha and I experienced it. It was important that we learn to share with our family and close friends and to connect with a good counselor or spiritual mentor. Ignoring these issues while trying to move on had done enough damage. We had to slow down and pay attention.  

Me@52: What else have you learned?
Me@73:
A lot more, but here are two things. I shared a year ago how a college buddy from Nashville, Dr. Ed Anderson, welcomed the help of his wife’s friend who organized several other friends to visit and do things with Ed’s wife, such as take walks, do lunch, and go to movies. I wish I’d discovered this concept early on.

Martha with Kathryn, Rachel, and David

Martha with Kathryn, Rachel, and David

And then this: The best gift I received while caring for Martha came from our two older children after they graduated from college. Rachel and David told me they wanted to give me a weekend a month off while they watched after their Mom. I jumped at the offer, spending most of those weekends at a nearby monastery. There I could vent, read, sleep, pray, write in my journal, take walks, meditate, yell at the orange trees, and laugh and talk with the brothers who reside there. This gift was not easy on either David or Rachel as they were forced to reverse roles with their mother.

Me@52: What were the biggest obstacles you faced?
Me@73:
There were many, but one stands out. And that was being able to see Martha’s identity and person in the midst of her diminishing skills—her inability to walk, to talk, to recognize me and the children, to feed and care for herself. All mental disabilities, including Alzheimer’s, still carry a social stigma. That’s improved some from two decades ago, but by no means has disappeared.

I’m convinced today that no matter how diminished Martha’s skills were, the core of her identity—her personhood—was still intact. Too many times she connected in some fashion with us, seemingly out of the blue. Her art. Her smile. Her dancing. Her excitement when Kathryn, Rachel, or David showed up.

A family collage

A family collage

A new online friend, retired Methodist Bishop Ken Carder, shares a similar insight in this poignant homily.

Martha spent her last six years in a nursing home. I usually dropped in 5 or 6 days a week. When I did I often found her in bed or in a chair curled up in a fetal position, her right hand holding tight to the back of her neck. “Hi, Martha, this is Carlen.” Sometimes she’d recognize my voice, often not. I would sit beside her and slip my hand into her free hand, and begin to meditate as we’d practiced, quietly repeating the word we’d chosen long ago. Almost without fail, Martha would relax, her body quietly unfolding. Sometimes she fell asleep. Other times she lay awake, her bright blue eyes focused on me or on something far beyond the room. During these moments, I sensed a presence in that room that I’ve not felt before or since. It was warm, comforting, and palpable. Someone reading this may describe such moments differently than me; I can only describe these moments of mystery and stillness as God’s healing Presence.      

Me@52: Why did you decide to go public with our family’s very private story?
Me@73:
That was the furthest thing from my mind while negotiating through this crisis. But Lacy and another friend encouraged me to share our story as a way of helping others compare their issues with ours. Not long before Martha died in 2014, I cracked open the 14-volume journal I kept the first ten years; I hadn’t looked at it in a long while. “Oh…this is raw,” I remember thinking. Eventually I got past that to begin work on a draft. Only after my book came out did I realize that sharing our story proved cathartic as I wrote and cried and wondered. It helped me to grieve and laugh.

If you’ve read my book—A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s—you may realize that Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded over 17 years.

A Path Revealed.Hi-Res-9%.jpg

I specifically describe these 17 years as an odyssey rather than a journey. After living through a volatile crisis like Alzheimer’s, the term “journey” sounds too tame and too planned to my ear. In the classical sense of an odyssey you wake up one day in a foreign country. You’re lost, you’re hurt, and you’re confused. And you’re desperate to return home. You’ll do anything to get home, you’ll go anywhere. And when you do get home—IF you do—you find home is not the same place as when you left. And you are not the same person.

These hard lessons and surprising encounters are some of the reasons I decided to go public by writing A Path Revealed

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

Thank you for sharing your time with me. Feel free to contact me at my email address below with any questions or comments.

May this season of gifts and thanksgiving be filled with wonder, with all hope, love, and joy, regardless of our circumstance or crisis.

Me and my Gang of Five: Libby (12), Olivia Grace (7), Bennett (6), Victor (4), Nelson (10)

Me and my Gang of Five: Libby (12), Olivia Grace (7), Bennett (6), Victor (4), Nelson (10)

Please do yourself a favor by taking good care of yourself while caring for your loved one.  

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1 One other thing: There are many good resources today for caregivers, unlike 20 years ago. Another friend in Nashville, Bob Beckett, who’s been caring for his wife for 12 years now, has compiled the most comprehensive list of resources I’ve seen so far. It’s worth checking out if you haven’t.

PS2 Other lessons I’ve learned as Martha’s caregiver and from others living with Alzheimer’s and their caregivers can be found by viewing my archive of posts from the last three years.

PS3 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.  

PS4 I recently bought 200 Alzheimer’s stamps for my holiday card mailing. The net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of October, 4.8-million stamps were sold, raising $680,000 since its issue on November 30 of last year. Advocates for this stamp would like to see $1-million raised by the end of this year. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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"Keep Asking Questions Until You Get the Answers!"

This is a touching human interest story by a man diagnosed several years ago with early onset Alzheimer’s; it’s about a well known woman who’s recently disclosed she’s been diagnosed with dementia. You may remember that Justice Sandra Day O’Connor stepped down from the Supreme Court several years ago to care for her attorney husband who’d developed dementia.

Greg O'Brien is an investigative reporter now living with Alzheimer’s disease. He shares his experiences in a book called On Pluto: Inside the Mind of Alzheimer’s. Residing in the Cape Cod area, Greg writes in Psychology Today about the day as a cub reporter in Phoenix when he encountered Sandra Day O’Connor storming out of her courtroom, steamed at the ineptitude of the defense and prosecuting attorneys.

Psychology Today

Psychology Today

To read Greg’s story and about his friendship with Justice O’Connor, click here… “Keep Asking Questions”. I hope you enjoy it.

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

What His Father Taught This Doctor About Alzheimer's

“I felt all sorts of guilt and shame the day I realized Dad might have Alzheimer’s,” says Dr. Daniel C. Potts, a practicing neurologist. “The signs had been there, but I hadn’t recognized them.”  

It all came to a head in one of the “most important days in our family’s life.” Dr. Potts had welcomed his parents’ move from his small hometown of Aliceville, AL, to Tuscaloosa where he’d set up practice. His retired father, Lester Potts, took a job parking cars in a hospital garage near Dr. Potts’s medical office. “Unbeknownst to me, Dad was having trouble with losing keys, fender benders, and the like. An acquaintance working for the hospital called me and asked if I were aware of what’s going on with Dad.”

“‘I think maybe your Dad has Alzheimer’s,’ she told me.” His father lost his job that very day. “I saw this oak tree of a man cry and begin to die. After my father’s diagnosis, I found myself struggling in a dark place, and I felt myself begin to die, too.” That was 2002; his father was 74 and Dr. Potts, an only child, was 36.

Dr. Daniel C. Potts—neurologist, caregiver, advocate

Dr. Daniel C. Potts—neurologist, caregiver, advocate

Warning signs had cropped up a few years earlier in Aliceville. Lester had worked as a saw-miller in rural Alabama among other jobs. He also was deeply involved in his civic club, in church, and in the community, even serving on the town council. His wife was the town librarian. One of the earliest warning signs occurred at their church: First United Methodist had a lovely magnolia tree cut down because it was dying. “Dad was really angry when he saw the tree gone; he didn’t understand why. So he called every church leader and blessed them out. That was so unlike him.”

Lester Potts before his diagnosis

Lester Potts before his diagnosis

Lester was a physically strong man, and following his diagnosis his behavior became so erratic and aggressive at times that his wife couldn’t care for him. Dr. Potts and his mother finally enrolled him in the Caring Days adult center in Tuscaloosa. “It’s a wonderful place. Their staff embraced Dad and focused on discovering his ‘personhood.’”

Not long before Lester’s enrollment, Caring Days had enlisted a retired artist, George Parker, to start an art program for their clients. Lester was one of the first to participate. “Dad was very capable with his hands; he could do and fix almost anything, but he’d never painted before and shown no talent for it.”   

“Then when Dad brought home his first painting, ‘The Little Hummingbird,’ Mom and I were amazed. It was an important day for us all. In that little hummingbird, we saw Dad’s spirit soaring out of his darkness.”

Hummingbird2.jpg

Over the course of three years, Lester painted about 100 pieces, many of which you can see on Lester’s Legacy website.

Blue collage2.jpg

‘The Blue Collage’ shown above is his most well known piece, says Dr. Potts. “It was painted near the end, when Dad couldn’t put a sentence together. The painting is an abstract representation of my father’s father—a high-topped shoe, a cross coming out of the shoe with a hat on it, and an upside-down crosscut saw. All images that would have defined my grandfather, who was a strong figure in Dad’s life. The colors are warm and hopeful. The painting is very spiritual to me—it says so much more than I can think or say.” 

“As Dad’s interest in art grew, he got better—his behavior was better and he was more communicative. I also think that cognitively Dad got better as well. His creativity was transformative not only for him but for all those around him. It seemed that the spirit of the very one with the disease was lifting the spirits of us all.”

Dr. Potts, his mother Ethelda, and father Lester

Dr. Potts, his mother Ethelda, and father Lester

After seeing art’s impact on his father, Dr. Potts surprisingly started to write poetry. Surprising to both him and his wife. “I woke up in the early morning on New Year’s Day 2006 and wrote a poem. I showed it to Ellen, who said, ‘Where did that come from?’ And for the next 30 days, I did the same thing, waking up early and writing a poem. With dark circles forming under my eyes, I started to look like Jack Nicholson in ‘The Shining.’ I’d never written before.”

“Poetry lifted me out of my funk. It’s now my most important outlet, along with hiking. And this came from the heart of a man with Alzheimer’s disease.” In time, Dr. Potts published a book titled The Broken Jar, which is comprised of 30 pieces of his father’s art and 30 of his poems, one alternating after the other. His poetry can be found on his website The Wooded Path.

“Writing helped me immensely as Dad’s condition progressed, and seemed to give meaning to what was happening. In my writing, I often attempt to place myself in the shoes of the person with dementia and speak in what I perceive to be their voice. I truly feel that writing has made me a better physician; I’m a better listener, because I’ve learned to listen to the deepest parts of myself.”

Dr. Potts sums up his thoughts: “Mostly what I feel when I write is gratitude for the opportunity we were given to see Dad’s spirit soar because someone cared enough to believe that he was still present, that his soul still sang despite the disease.”

Listening to Dr. Potts share such experiences prompts several more questions…  

Me: You now travel and speak nationally as an advocate for those living with Alzheimer’s or dementia and for their family caregivers. Did you before your father’s diagnosis?
Dr. Potts:
No. 

Note: Dr. Potts’ dementia advocacy work has not gone unnoticed. The American Academy of Neurology honored him in 2008 as its Advocate of the Year for his work using the arts to improve the quality of life for those with dementia and their care partners. In 2016, he was honored by the University of Alabama Medical Alumni Association for its Martha Myers Role Model Award, honoring those who epitomize the ideal of service to their communities. “These are the two honors I’m most thankful for in my career,” he says. “They are the result of my experience with Dad.”   

CM: Are you doing anything differently with your dementia and Alzheimer’s patients from before your father’s crisis?
DP:
My approach is completely different. I like to think I always had empathy and compassion. And I’ve always tried to diagnose as early and clearly as possible. But now I also work with my patients and their families to figure out ways to help them live well with this disease. I line them up with the resources they need—reading materials, support groups, day care facilities, in-home care, and the like. I also encourage the families to look for things their loved ones can still do well.

All this came out of our experience with Dad. When he was diagnosed, I didn’t know where to turn. As strange as it may seem, caregiving skills were not taught in medical school or in residency. The thorough knowledge I received of the pathology and clinical manifestations of Alzheimer’s was not helping in the day-to-day challenges facing my mother, Dad’s primary caregiver. I didn’t know enough to help.

Since Dad’s death, my wife Ellen and I wrote A Pocket Guide for the Alzheimer’s Caregiver. (More on their book later.)

CM: Are you seeing any improvement in the training of neurologists from when you were in school—from a caregiving perspective?
DP:
No. Or very little. I attended a Dementia Action Alliance meeting. A panel of persons living with various forms of dementia was asked to raise their hands if their doctor offered helpful information and direction after telling them of their diagnosis. Not one hand went up. Some of the words used to describe their doctors were “cold,” “analytical,” “distant,” “abrupt.”

Since that meeting, I’ve started advocating for the ways we neurologists are trained. I think the tide may be changing somewhat. I hope it is.

CM: Your father died at age 78 in 2007, five to six years after his diagnosis. You were 41. How did you handle that?
DP:
After Dad died I burned out; it had been building for some time. I disintegrated into addiction, isolation, depression, and grief. It all came to a head nearly six years ago when I had to take a four-month medical leave from the practice of medicine.

A centerpiece of my recovery has been the teachings of Richard Rohr (a Franciscan priest). I first read his book Falling Upward: A Spirituality for the Two Halves of Life, and since then read many others. I also read his daily online homilies, and I’ve visited his center in New Mexico a couple of times.

(Father Richard Rohr founded the Center for Action and Contemplation (CAC) in Albuquerque in 1986. He’s an internationally recognized ecumenical teacher who’s written numerous books on spirituality, meditation, and commitment to action within the Franciscan Christian tradition.)

In addition to Rohr’s teachings, my family’s love and support—along with that of my friends, therapists, and church and support group members—did for me what I now advocate doing for those living with dementia: They helped lead me back to me.

CM: Of what value are Rohr’s teachings to your practice and involvements today?
DP:
I’m now what you might call a “mindfulness practitioner.” What I’m learning about listening at another level has found its way into my practice and into the way I interact with people. I teach on subjects using the expressive arts and storytelling to improve the quality of life in those living with Alzheimer’s and other dementias. I also teach an undergraduate course, “Bringing Art to Life”, at the University of Alabama Honors College that includes many students entering pre-med, nursing, and other health-related professions. I pour a lot or Rohr’s teachings into all these.

CM: You started a foundation in memory of your father. Tell us about that.
DP:
It’s called Cognitive Dynamics: Bringing Art to Life—Word, Drama, Art, Music. Our mission as shown on the website is “to improve the life of persons with cognitive disorders and their caregivers through education, research, and support of innovative care models which promote human dignity, especially therapies employing expressive arts and storytelling.”

Often medical research is performed for the sake of science, without a clear goal of improving the perceived quality of life. This traditional approach to research is important, but we also see a tremendous opportunity to improve the lives of those living with dementia and their families through alternative approaches to research.

(The foundation’s work is financed through grants, individual donations, and the sale of copies of Lester Potts’s paintings.)

CM: One final question, though not a simple one. What advice would you give to someone today who’s recently diagnosed with Alzheimer’s or dementia and to their family?
DP:
To the person diagnosed I would say nothing has the power to rob you of yourself. Some people have diabetes. Some have cancer or depression. You have Alzheimer's/dementia. But that does not make you "less than," or less yourself. To the extent that you are able, celebrate your life daily, and the lives of those whom you love and who love you. Do things that you enjoy doing. Just be yourself. There is nothing to be ashamed of. Laugh. Sing. Pray.

To the family: Learn as much as you can about the diagnosis, and promptly begin to make plans for the future. Do not give up on your loved one. Honor their personhood, and help them daily to express themselves. Remember the things that make them who they are, and support those. Do not hold them accountable to be what your ego needs them to be. They are who they are. Join them in their world. Celebrate the uplifts, the small gifts—a look of recognition, a shared special moment, a new talent discovered. Learn not only to give, but also to receive and draw energy from your loved one's spirit. Have no resentments, judgments, or regrets. Make a gratitude list. Sleep. Take care of your own needs without guilt. Ask for help from family and friends. Maintain your friendships and other social involvements. Pray.

From my experience with Dad I know that much of this is easier to describe than immediately to do. But working on and growing into these traits is worth the time, focus, and energy—for you and for your loved one.

CM: Thank you, Dr. Potts, for sharing your family’s story and your insights.

**********************

On occasion, I give a book away. It seems appropriate to do so with A Pocket Guide for the Alzheimer’s Caregiver, co-authored by Dr. Potts and his wife Ellen, whose maternal grandfather and paternal grandmother lived with Alzheimer’s disease. She has over 20 years of experience in healthcare management and teaches at the University of Alabama in addition to being the executive director of Tuscaloosa’s Habitat for Humanity. 

Their book is practical and straightforward with chapters short and to the point. Here are a few of the 34 chapter titles: A Word about Caregiving; False Accusations; Inappropriate Public Behavior; Clothing; Dressing/Bathroom Issues; Eating Issues; Wandering; Walking and Balance Problems. The cover is a Lester Potts painting.  

A Pocket Guide2.jpg

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, October 24, and Friday, October 26, 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. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random. For more details, click Book Giveaway.

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

PS1  I share in my book our family’s 17-year experience of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed, I was 52. Our children were in high school and college. Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded through this time. The book is titled A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. It can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

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

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. More than 4.5 million stamps have been sold through its first ten months to raise $626,000 for Alzheimer’s research; the net proceeds go to the National Institutes of Health. Join me and thousands of others to Help Stamp Out Alzheimer’s.

The stamp2.jpg

How Can Forgiveness Improve a Caregiver's Life?

If you’re familiar with our family’s 17-year odyssey through Alzheimer’s, you may remember how vital it was to Martha’s well-being and mine that we let our resentments go. Not just some of them—all of them, whether recent or longstanding.

I shared a few of our issues regarding bitterness in my book A Path Revealed and in an earlier blog What Would I at 70 Tell Me at 40? The hard, underlying lesson for me is this: To stay embittered after I’ve been wronged by someone or by some situation hurts no one but me. It’s in my self interest to let that obsession go. Previously, I’d thought that forgiveness was a nice virtue I could get around to when convenient.

Our family’s experience was affirmed recently by Carol Bradley Bursack in a post that cites five examples of how forgiveness can improve a caregiver’s life. You may know that I’m a fan of Carol’s (aka #TheCandidCaregiver). I interviewed her in early 2017… It’s About Quality of Life, Not Quantity

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Her daily blog, Minding Our Elders, is worth following. In her recent post, Carol wrote…

“Forgiveness, or the lack thereof, can loom large in the life of a caregiver. Forgiving doesn’t mean forgetting. That is rule number one for people to remember when they are working toward crafting better relationships with family members and others whom they care about. Forgiveness can have enormous benefits for the health of the person who does the forgiving. Considering that negative thinking can be disastrous to your own health, you may want to work toward the positive habit of forgiveness. Here are some people that you may need to forgive along with reasons why you should… Read the full article here about how forgiveness helps the forgiver more than the person forgiven.”  

Although Carol’s post isn’t long, it may take a while to absorb. We all know that it’s easier to say “let it go” than to do it. But to do it was vital to our family’s well-being.

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

A Path Revealed.Hi-Res-9%.jpg

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

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first eight months over 4.1 million stamps have been sold to raise $579,000 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Join me and thousands of others to Help Stamp Out Alzheimer’s.

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What This Care Partner Is Still Learning Years Later

Editor’s note: I recognize that this post cuts against the rules I’ve learned about keeping online writing short and quick, that a reader’s attention span online often is limited. But I think this post, which includes Bob Beckett’s “Notes,” is an exception to the rule IF YOU HAVE any connection, interest, or relation to the crisis of dementia and/or Alzheimer’s. I doubt these “Notes” can be absorbed in one quick reading.

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“The thing I’m stressing today to people is to develop and use all your friends, support groups, and available resources. This is a journey that would be extremely difficult if one tries to go it alone.”

 But that wasn’t always Bob Beckett’s outlook while caring for his wife over the past decade. Early on, he says, he thought he could handle any issue that arose with Kaki, who had been diagnosed in 2009 with mild cognitive impairment (MCI) at age 64. He’d noticed some symptoms a few years earlier. 

You may remember Bob and Kaki from my post 15 months ago, titled Are You Going to Love Me Forever and Ever? They live near Nashville in Brentwood, TN.

Bob-Kaki3-2018..jpg

Bob’s attitude changed during a chance meeting with a friend at, of all places, a recycling center. “You’re being selfish if you don’t let people help you,” this friend, a nurse, told him.     

“From then on I started looking for people and places for help. I finally accepted that I could not perform at the highest level all the time.” 

Bob’s early viewpoint was no different than many care partners, if not most of us. My wife Martha was diagnosed with Alzheimer’s at age 50 in 1997. Only when my back was against the wall, and after some gentle nudging from our sister-in-law, did I realize I couldn’t do it all. 

Today Bob gives himself and Kaki welcome breaks with a variety of friends, organizations, and family members. Once a month he attends a support group, which he’s done since 2009. Three days a week Kaki visits an adult care center. Two days a week a friend comes to stay at their house while Bob goes elsewhere. And their two daughters, who live in Atlanta and the Knoxville area, relieve Bob one weekend every two months.   

Yet Bob not only welcomes help now. He also shares his insights with anyone who asks and wants to talk. Even to the point of compiling a list of the many concepts and resources he’s learned over the course of their crisis.

It’s the most comprehensive list that I’ve encountered to date. I would like to have found a list like Bob’s at any point during our 17-year odyssey, but especially early on when Martha and I were floundering.

He gathers his ideas into such topics as: Now that you’ve been told you have dementia, what do I do now? Taking care of my loved one. Preparing to be a caregiver by taking care of myself. Communication suggestions. Survival tips.

Bob’s compilation is a checklist; he offers little commentary, knowing that each of us must find our own way. But it sure would be good if someone could help point me in a direction. And Bob’s checklist does just that. His instinct in compiling such a list appears to have grown out of his 30-year career in the Tennessee Army National Guard. He retired as a colonel after serving as Director of Logistics for all of Tennessee. 

His compilation is titled “Notes on Caring for My Wife with Alzheimer’s.”

Who do I think would find this helpful?

  • Anyone living with the early stages of dementia and their care partner.

  • Any care partner at any stage, as much to be a reminder as to discover new ideas. 

  • Family members of those living with Alzheimer’s or any form of dementia.

  • Friends of those living with Alzheimer’s or any dementia.  

  • Support groups.

  • Neurologists and others in the medical community dealing with dementia. If for nothing else, to share with their patients.

  • Church or other groups working with members struggling with dementia.

I’ve read through Bob’s compilation a dozen or more times, and each time I’ve encountered something I hadn’t done…but wish I had. I certainly haven’t absorbed it all in one sitting.

One caveat: Bob Beckett is not a medical professional, nor am I. His insights are derived from hard experience, conversations, and serious study, and should be considered guides or suggestions only. Please discuss with your doctor any questions specific to your issues

Don’t thank me for the following “Notes”. Thank Bob Beckett.

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

*********************

NOTES ON CARING FOR MY WIFE WITH ALZHEIMER’s
by Bob Beckett of Brentwood, Tennessee

(Compiled October 2017)

I have been a participant in an Alzheimer’s support group that meets monthly at Brentwood United Methodist Church, outside Nashville. The group is led by Dr. William Petrie of the Memory and Aging Clinic at Vanderbilt Medical Center’s Department of Psychiatry; it’s administered by Sue Dowling. I joined this group after my wife Kaki was diagnosed in 2009 with mild cognitive impairment (MCI). I share a brief history of our story at the end of these notes. These notes come from support group meetings and elsewhere; they are not original. I have given credit to those where I’ve documented; unfortunately I have no idea who to give credit for much of what is here, to those who have helped in my education.

There’s a lot to consider here. Don’t panic and feel guilty that you’re not doing what it’s taken me 12 years to learn. Read, think, and move at your own pace.  

If you have any thoughts, questions, or comments about what I’m sharing here, I can be reached at bob.beckett@comcast.net. Please understand that I am NOT a medical professional. Discuss with your doctor any questions specific to your issues.

*********************

You may have heard a medical professional say, “It appears you have dementia.” After the initial shock your first question, as mine was, may be …

 WHAT DO I DO NOW?

  1. Get out of denial.

  2. Get educated about dementia – Alzheimer’s Association can be a good place to start.

  3. Find support from other caregivers.

  4. Start planning – legal, care plans, how and when you will share diagnosis with family and friends.

  5. Love one another and have fun together while you can.

  6. Spend time together experiencing the spirituality of life.

  7. Fill the house with music.

  8. Assess your living conditions for safety, and make changes as necessary.

  9. Don’t try to make this different than it is.

  10. Recognize mood is important; consider lighting candles, playing music, use fragrance etc.

  11. Develop a plan to take care of yourself physically & emotionally.

  12. Accept that letting go is not giving up.

  13. Document a list of family & friends that you can call on for help.

  14. Develop plans to involve family and friends consistently.

  15. Ask for help.

  16. Accept all help that is offered.

  17. Spread the laughter, share the cheer, be happy while we are all still here.

PREPARING to be a CAREGIVER—TAKE CARE of MYSELF

One who goes down the road of dementia, whether as a care receiver or caregiver will have to find their own twists and turns in the road. But it is not necessary to go down this road in total darkness, if you choose to take with you the light of others’ experiences. It is a marathon not a sprint, so aptly referred to as ‘The long good bye.’ We have all heard the flight attendant say, “In the unlikely event of loss of cabin pressure an oxygen mask will fall from the ceiling, grab the mask closest to you and put your own mask on first before assisting anyone else.” We understand that statement; it is especially true when caring for a loved one with dementia.

  1. As soon as practical get a thorough physical examination for yourself, make changes as your doctor recommends including your own medications.

  2. Make time for you to have some form of physical activity most days. At a minimum walk at least four days every week, initially this may be combined with your loved one.

  3. It is important to keep living while you are caregiving; find ways to be happy.

  4. Eat healthy foods in moderation.

  5. Don’t smoke.

  6. Find ways to not be on duty 24/7.

  7. Explore options such as memory day care facilities.

  8. Explore options for a care partner to come into your home.

  9. Research and interview home health care agencies that are trained in working with dementia.

  10. Find a way to be away from your loved one for personal recreation at least two nights once a quarter. One good option is to have family stay in your home with your loved one or find a respite care facility where your loved one will be safe and comfortable.

  11. Locate a good Alzheimer’s support group. They are all different, if you go to one and it doesn’t seem to be a fit for you, try another one; search until you find a place where you can share in confidence your questions, feeling, concerns and where you can contribute to others. There is added strength in knowing you are not alone.

  12. The late Thomas Merton, a Trappist monk, is quoted as saying: “He who attempts to act and do things for others, without deepening his own self-understanding, freedom, integrity, and capacity to love, will not have anything to give to others.”

  13. You should recognize the loving care you are willingly giving can slowly become overwhelming and completely wash away your identity; then there are two losses instead of one. You should find ways to keep the vigor of your own life strong and be around those people you like. Use the energy of their friendship and presence to provide the fuel to maintain your own drive, personality, and motivation.

  14. Learn to love the person as they are, not as you wish they were. That is not easy but in the end, acceptance and compassion can lead to some semblance of peace.

  15. Statistics indicate a person caring for someone with Alzheimer’s is twice as likely to have depression as someone caring for a person without dementia.

  16. Remember that no matter how good or bad a situation is, it will change.

TAKING CARE of MY LOVED ONE

  1. The best drugs you can administer may well be Acceptance & Compassion.

  2. Knowledge leads to better understanding and technique which produces excellent care.

  3. Promote independence and confidence.

  4. Do more with your loved one—not so much for your loved one.

  5. Get out of the house.

  6. Create more purpose with projects.

  7. Pay attention to your loved one. Like everyone else, they want recognition and want to be assured they are safe and loved.

  8. Verbally communicate to your loved one that you love them. This is as much for you as for them.

  9. Recognize and accept that your loved one is likely scared and lonely.

  10. Learn and remember to move at their pace, not yours.

  11. Challenging behavior is an indication of unmet need. Determine if that need is physical or emotional. Your loved one’s problems often are the result of either fear or pain.

  12. Do not be judgmental; accept they are likely doing the best they can at this point in their life.

  13. Understand the purpose of all medication; some meds are to slow the advance of Alzheimer’s; others may be calming, given to your loved one to medicate for their safety or cooperation.

  14. Medication & care are only recommendations by your doctor, not the final decisions. You and your family should make the final decisions.

  15. Only as a last resort take a person with Alzheimer’s to a hospital emergency room. If your loved one must go, stay with them at all times to explain their condition to attending staff.

  16. Today there is a plethora of training materials on the Web, DVD’s, training conferences that may be attended. These are good places to start. The local Alzheimer’s Association can recommend other resources.  

  17. My preferred online training is Teepa Snow’s ‘Positive Approach to Care’ found at www.teepasnow.com. Her videos often help me regain my perspective after particularly trying moments.

COMMUNICATION SUGGESTIONS

  1. Take three deep breaths…inhale, exhale; inhale, exhale; inhale, exhale…NOW speak to your loved one.

  2. Speak in a gentle caring manner.

  3. Look directly into your loved one’s eyes when attempting to speak with them.

  4. Don’t argue or confront.

  5. One thing at a time.

  6. Use short, simple, and direct sentences.

  7. Emphasize what your loved one can do.

  8. Don’t be critical.

  9. Don’t use such phrases as “I am trying to help you.”

  10. Respect your loved one when talking to others while he or she is present. Your loved one likely comprehends what you are saying, although they may not retain it for a long period in their memory.

  11. If/when your loved one reaches a point of not knowing who you are or your relationship, tell them “I am the person who loves you.” Don’t worry about them recalling your name.

ATTITUDE

Like everything else in life, what’s important is how we feel about something, not what it is. We don’t see things as they are. Rather we see things as we are.

As dementia progresses you and your loved one will likely be living in two different worlds. You must go into their world and recognize they can no longer come into your world.

Alzheimer’s affects the brain; it does not affect the internal love your loved one has in their heart for you.

Things don’t always work the way we want them to, but they usually work the way we expect.

SPIRITUAL THOUGHTS and PRAYERS

The Prayer of St. Francis… “Lord, make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; and where there is sadness, joy. O Divine Master, grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved as to love. For it is in giving that we receive; it is in pardoning that we are pardoned; it is in dying that we are born again to eternal life.”

Memory may be gone from your loved one, but the Holy Spirit does not leave your loved one.  The Spirit of God is present in every person created by God.

People are like stained glass windows. They sparkle and shine when the sun is out. But when darkness sets in, their true beauty is revealed only if there is a light from within.

Most Holy Spirit, guide me on my journey as a caregiver. Each step of the way I need you. I don’t know how long this trip will last. Please give me comfort and rest when I’m done. Amen.

Father, you gave us a mind so we can think, plan, understand, and remember. Help me to see into the mind of my loved one. Where there may be some loss, please fill that space with your peace. Amen.

God, help me step back and get a clear look at what’s happening with my loved one. Please give me the skills to be a good observer who is aware of what a mind, body, and spirit need. Amen.

Dear God, I’m sorry for the times I’m angry. I seem to run out of patience before my work is done. Give me that gift so that I will be able to always give compassionate care. Amen.

May your joys be as deep as the oceans and your troubles as light as its foam. And may you find sweet peace of mind wherever you may roam.

SURVIVAL TIPS 
from Arkansas Coach Frank Broyles’ book,
“Playbook for Alzheimer’s Caregivers”

  1. Put staying healthy at the top of your list.

  2. Have a backup plan in case something unexpected happens to you.

  3. Take one day at a time.

  4. Keep your sense of humor.

  5. Pat yourself on the back for the good job you are doing.

  6. Get enough rest and eat right.

  7. Make time for the things you like to do.

  8. Talk about how you feel with others.

  9. Listen to your friends.

  10. Make a list of all the things your loved one can still do.

HOW LONG DO WE HAVE?

After thinking about this question I have decided it is a question I do not need to think about any more until we involve Hospice. Rather, I now choose to focus on what we can do today, this week, this month, this year, for both of us to enjoy life as much as we can while we are still healthy and living well.

PREVENTION
How do I protect myself from dementia?

Reduce the risk factors associated with Alzheimer’s. We are taught now that the following may have more to do with Alzheimer’s than does genetics: Sedentary life style; obesity; smoking; high cholesterol; high blood pressure; hypertension; consistent exposure to chemicals; chemicals injected in animals and vegetables that are consumed by humans; lack of sufficient, restful sleep.

The following disciplines are important for a healthy brain: Fitness and physical activity—walk; good aerobic exercise; restful sleep; mental stimulation; spirituality; Mediterranean diet; socializing; stress management; control of hypertension.

 **********************

>>APPENDIX<<

WHAT I HAVE LEARNED ABOUT DEMENTIA

  1. Dementia equals degenerative brain failure.

  2. Dementia is an umbrella term that covers multiple issues of brain failure; the most widely known form of dementia is Alzheimer’s which some estimate to be almost 70% of those affected. Other well recognized forms of dementia are: Vascular dementia; MCI or mild cognitive impairment, which may develop into Alzheimer’s over a period of time; Parkinson’s, which affects the motor skills; Lewy Body type often experiences hallucinations; Frontotemporal Lobe (FTL), which appears to initially affect behavior and emotion; CTE is associated with athletes who experience multiple head injuries. The list goes on & on.

  3. Dementia is a progressive memory decline that affects: a) language; a loss of language skill is referred to as aphasia; b) motor skills; c) ability to think or reason.

  4. The brain is less than .02% of body mass but requires 20% of body energy. Recognize every brain is different so every individual who exhibits signs of dementia will have a different experience. There are many common items but also different personal reactions.

  5. The medical community recognizes at least three stages of dementia: a) loss of memory b) confusion c) neurological issues. They usually occur in that order but not always. In estimating time sequences these stages occur in approximately three-year periods, but not always: early stage, middle stage, and late stage. Several health organizations break these stages into 6 or 7 phases for determining and understanding how to provide the best care.

  6. At this point there is no known cure for Alzheimer’s, so for the long term there is no hope—that is one of the most difficult parts of confronting this disease. Unlike cancer or heart disease we cannot point to cures and survivors.

  7. Understand dementia is not just a medical issue. It is also embedded with emotional, psychological, and spiritual issues that must be realized and resolved if we want healing.  Dementia will affect all phases of your life, the lives of those you love and who love you.  Consider and address the effect on the physical, emotional, psychological, financial, and spiritual aspects of your life. From the book “A Path Revealed” by Carlen Maddux.

  8. Alzheimer’s causes your loved one to lose their biography so they no longer know “who I am.”

WHAT CAUSES DEMENTIA?

  1. Probably the most correct answer is we don’t know. There are several well researched hypotheses, many of which probably have some validity. 

  2. The following previously mentioned risk factors appear to have more to do with Alzheimer’s than does genetics: Sedentary life style, obesity, smoking, high cholesterol, high blood pressure, hypertension, consistent exposure to chemicals, especially chemicals that are digested by animals and then consumed by humans.

  3. Lack of good sleep; this is an interesting hypothesis and worth exploring.

  4. It is estimated that less than .02% of those affected with Alzheimer’s are the results of genetics, often referred to as hereditary. APOE-4 is a specific gene that may be passed. Almost always in those cases when Alzheimer’s is hereditary it is obvious as early onset or recognizable before age 60. 

  5. Much is written about amyloid, tau, tangles and their effect on the brain. There are many pharmaceutical reports that are available for your review on these subjects.

  6. Inflammation increases the production of amyloid, killing healthy neurons.

  7. Anesthesia should be avoided or at least minimized for individuals who have indicated Alzheimer’s symptoms

HOW IS ALZHEIMER’s DIAGNOSED?

  1. To properly diagnose Alzheimer’s requires a competent medical professional. It is encouraged that either a medical doctor with a specialty in psychiatry or a neurologist who has experience in this field be the doctor who administers and evaluates the tests and determines the diagnosis.

  2. There are multiple tests for an evaluation, including a complete assessment of medical history, physical exam, neurological exam, brain imaging. Also including memory evaluation; simple problem solving; remembering a short list of words, and then recalling those words after several minutes into the conversation; answering questions like: What is the day, date, month? Who is president?

  3. Two simple tests that are often used are MMSE—Mini Mental State Exam, which asks a person a range of 30 simple questions; the number right identifies severity of disease at time of exam. The second test is known as Mini-Cog: The person is asked to remember names of three common objects several minutes into conversation. The second task is to draw the face of a clock, showing all 12 numbers in correct position & indicating the time as specified by examiner.

  4. It is estimated by Mental Health of America that as many as 15% of the individuals tested are misdiagnosed. For example, an individual with severe depression may be wrongly diagnosed with Alzheimer’s. So it’s vital to be working with a competent physician trained in the field.

WHAT ARE the MOST COMMON MEDICATIONS
PRESCRIBED for ALZHEIMER’s?

It is important to remember that the medications currently being prescribed do not stop or reverse the buildup of amyloids; they only slow the inevitable reduction of brain functions. Each of the following have proven to slow the speed by which Alzheimer’s reduces the abilities of some patients. Do not expect any to be a cure. These medications may slow deterioration of the brain for three to five years. Deterioration will continue just at a slower pace. This medication list is from the WebMD website: a) Aricept, or Donepezil; b) Namenda; c) Exelon patch.

RESOURCES for MORE IN-DEPTH KNOWLEDGE

The fortunate experience we have today is the amount of information available for those who take the time to search and study. I truly believe the more we educate ourselves about dementia the more fulfilling our life and the life of our loved one can become. (Please note: Some of these are specific to my locale; discover similar services in your community.)

  • The Alzheimer’s Association has a very good website worth visiting and reading for introductory information: www.alz.org. The basic information written here is expanded on their website; they also provide a monthly newsletter and electronic notes. Recognize that the Alzheimer’s Association is a non-profit that is tasked to raise funds for research and their ongoing expenses. Several other non-profits also are worth exploring.

  • As mentioned previously my preferred training is Positive Approach to Care (PAC), presented by Teepa Snow at www.teepasnow.com. (PAC training in the Nashville area with Debbie Miller is excellent; Senior Helpers of Franklin, TN; 615.696.4842.)

  • The WebMD site is very informative and worth an initial visit.

  • The Middle Tennessee Council of Aging produces a “Directory of Services” that is a free, impartial guide for seniors & caregivers. 615.353.4235.

  • An excellent beginning guide with practical tips is “Coach Broyles’ Playbook for Alzheimer’s Caregivers”; www.alzheimersplaybook.com; or order print copy from via 479.435.0410.

  • National Institute on Aging booklet (Pub#17-AG6173): “Caring for a Person with Alzheimer’s Disease.”

  • Books & movies: Lisa Genova’s “Still Alice,” “The Notebook,” “Love & Other Drugs” are fiction but interesting and informative.

  • “Where the Light Gets In: Losing My Mother Only to Find Her Again” by Kimberly Williams-Paisley.

  • Maria Shriver’s “What’s Happening to Grandpa?” for talking to grandchildren about dementia.

  • Nashville National Public TV has a 10 part series “Aging Matters”; their DVD on dementia is well done.

  • “Minding our Elders” (www.mindingourelders.com) is a daily blog from Carol Bradley Bursack.

  • Dr. Landy Anderton, clinical psychologist, says Carlen Maddux’s book ‘A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s’ “belongs on the nightstand of every family coping with a crisis.”

**********************

OUR STORY

Kaki and I had our first date in October 1960; at that time we were both students at Tennessee Tech in Cookeville, TN. After graduating, we married in May 1964. Our two daughters Andi and Susi were born in 1968 and 1972, respectively. Kaki retired after 20 years teaching middle school in May 2001. During her last 10 years she was the technology coordinator in a Nashville area parochial school. At age 60 she was ready to spend more of her time being GranKaki, doing volunteer work as a tutor for less fortunate children, traveling, reading, quilting, and enjoying life outdoors.

(l to r) Daughter Susi, Kaki, daughter Andi, granddaughter Helen, Kaki’s sister Marilyn. (December 2013)

(l to r) Daughter Susi, Kaki, daughter Andi, granddaughter Helen, Kaki’s sister Marilyn. (December 2013)

In 2006 on a cruise, I recognized Kaki was finding it difficult to orient herself to the ship. This was strange because Kaki always had an excellent sense of direction. During the months that followed I recognized Kaki demonstrating symptoms that perhaps indicated memory issues. In early 2009, after a family discussion with our daughters, Kaki agreed to an evaluation session with Dr. William Petrie. After initial testing by his staff, we met with Dr. Petrie who told us Kaki could be diagnosed with Mild Cognitive Impairment (MCI), which is a form of dementia that often may lead to Alzheimer’s.

Dr. Petrie’s counsel was straight forward: 1) Begin a consistent walking program; 2) Learn something new to challenge your brain; Kaki chose to relearn playing the piano; 3) Develop a bucket list and start working on it while you can still appreciate and enjoy life.

The diagnosis was not easy to accept. Like many who confront this disease we decided not to share with anyone outside our immediate family. Kaki had the misguided belief that an Alzheimer’s diagnosis is like having a big red “A” stamped on your forehead. Not the way either of us wanted to be identified. My choice was to focus our lives more on activities with purpose and to educate myself about dementia. It was not long before friends began to question some of Kaki’s actions; soon, we reluctantly opened our lives to their love, prayers, and support.

At the writing of these notes, Kaki still enjoys relatively good physical health, for which we are thankful. For about four years her medication to slow the spread of Alzheimer’s was the patch from Exelon. She no longer takes any medication to slow the disease. She has been a part of an excellent memory day care program a couple of days each week for over four years. She has virtually no verbal communication skills; what she says is gibberish. Yet we know she still has some abilities to understand what is said. It is easy for her to become confused, disoriented, and scared. Her short term memory is limited at best. She does not understand our relationship as husband and wife but I believe she does know I am a person who loves her. One great blessing—she still knows how to laugh.

Leaving the work force was something I never expected to face. I always intended to work, being productive, earning an income, so long as I was living. Consequently, the decision to leave my work, as an independent sales consultant, was difficult. In 2012 I became a full time caregiver for my wife. I recognize that I am still working, but there’s just no financial compensation for my services.

I recognize the quality of health care available is largely dependent on our financial well-being. Many of us who face long term dementia issues are concerned with costs associated with full time memory and medical care. This is an area where I offer no suggestions or comments.

the end

Her Prayer for All Who Live with Dementia Worldwide

Rev. Dr. Cynthia Huling Hummel was asked by a mutual friend to write a prayer commemorating World Alzheimer’s Month this September. That doesn’t sound so unusual for someone with her background and credentials except for the fact that at age 57 she was diagnosed in 2011 with mild cognitive impairment (MCI) before slipping into early-stage Alzheimer’s two years ago. 

Pastor, advocate, author, country singer, mom, and kayaker

Pastor, advocate, author, country singer, mom, and kayaker

World Alzheimer’s Month is the annual global campaign to raise awareness and to challenge the stigma that engulfs so many who live with dementia. (It certainly engulfed Martha and me early on.) The statistics are grim and staggering. It’s estimated that every 3 seconds someone in the world is diagnosed with some form of dementia (every 65 seconds in the U.S.). An estimated 50 million people worldwide have some form of dementia, a figure expected to triple in the next 30 years unless there’s an effective intervention.

It’s against this backdrop that Dr. Huling Hummel penned this humbling, hopeful prayer, lifting it up for each of these 50 million persons and their families; for herself and her family; and for the rest of us, no matter what crisis we may be struggling with, or not.  

(You may want to slow down and read this prayer aloud.)

Dear Lord,

Bless those of us who are living with a diagnosis of Alzheimer’s or a related dementia. When days are difficult, wrap us in a blanket of your love and comfort us with your presence and your peace. When nights are dark, give us a star to follow—a nightlight in the heavens to remind us that you are there—guarding and guiding us and lighting our paths. When we are discouraged, give us hope. When we are hopeless, give us faith.  When we are weary, carry us close to your heart. When we feel depressed or angry, soothe us. 

Wipe away our tears and our fears and help us to move from “Why Me?” to “What Next?” 

We thank you for our care partners, for our family and friends who are walking with us on this strange and difficult journey. Give us all strength and courage and a sense of purpose as we join our hands and hearts to help others we meet along the way.

Help us all to cultivate an attitude of gratitude each and every day. Remind us to look for blessings in every day, and for holy moments walking in the rain, singing a familiar song, reminiscing over old photos.    

Lord, we pray for the doctors and nurses and all who care about us and for us. We pray for the researchers who are searching for treatments, therapies and cures. 

Most of all, Lord, we pray for a world without Alzheimer’s. 

Thank you! Amen.

Dr. Huling Hummel is active in the ClergyAgainstAlzheimer’s network. She shared her story in a January 2017 issue of Woman’s Day magazine. Our mutual friend, Lynda Everman who helped make the Alzheimer’s stamp a reality, made the stole Dr. Huling Hummel is wearing above.

Thank you, our newfound friend, for opening your heart to us all.

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

P.S. Feel free to forward this to any who might find it meaningful. Copy/paste/send this link... www.carlenmaddux.com/blog/her-prayer-for-all-who-live-with-dementia-worldwide

 

The Stigma of Dementia: Is the Fog Finally Lifting?

If you haven’t seen this recent article from Kiplinger’s Retirement Report titled “Finding a New Path with Dementia,” it’s well worth the read, especially if you or someone in your family is grappling with dementia in one of its many forms and stages.

For decades, a painful social stigma has been associated with dementia and its most extensive form, Alzheimer’s. For that matter, virtually every mental disability suffers from such a stigma.

&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; www.metoffice.gov.uk

                                                     www.metoffice.gov.uk

You may remember that when my wife Martha was diagnosed with Alzheimer’s in 1997 she had just turned 50 and the first thing she told me after a long hard cry was this: “I do NOT want to tell anyone. Not our children. Not my parents or my brothers. And certainly not any of our friends.”

That was a difficult request to honor. Within a few weeks Martha did agree to tell our three kids who still were in high school and college. And while word eventually did get out, Martha and I continued to pretend that no one knew but us.

This Kiplinger story is an excellent representation of the growing movement to support and embrace those living with dementia and their care partners. By comparison, the era when Martha was diagnosed not that long ago feels like the dark ages. There’s still a lot of work to do, however. Too many people still feel isolated, alone, and burned out.

I’ll be surprised if you don’t agree with my reaction to this article.

Carlen Maddux
www.carlenmaddux.com
carlen@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.

A Path Revealed.Hi-Res-9%.jpg

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

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first six months, 3-million stamps have been sold to raise $404,000 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Using these stamps one-by-one can add up: the cancer fundraising stamp, which has been out for several years, has to date sold 1.037-billion stamps and raised $87-million for research. Join me and thousands of others to Help Stamp Out Alzheimer’s; our goal is to raise $1-million by the end of 2018.

The stamp2.jpg

 

 

The Joy of Martha's Art

You may have seen some of my wife’s watercolor paintings on my website. But I thought you might like to see this short video (2:30) on her art by Paraclete Press, my publisher, as they acknowledge June being Alzheimer’s and Brain Awareness Month. This was the first time Martha showed any interest in art in our 25 years of marriage, about 18 months after she was diagnosed with Alzheimer’s at the young age of fifty.

CLICK HERE IF YOU'D LIKE TO SEE THE VIDEO

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A Conversation with My Wife's Neurologist

While Alzheimer’s seems to be growing in epidemic proportions, my gut tells me that the fear of this disease is exploding even faster. So I decided to share this concern and others with the one medical expert I personally know, Dr. Steven Cohen. He was my wife Martha’s neurologist for 17 years. It seems only appropriate to have this in-depth conversation now, since June has been designated Alzheimer’s and Brain Awareness Month and June 21st as The Longest Day.

“Worry is a common problem in our culture,” Dr. Cohen says. “Not just about Alzheimer’s, but worry, worry, worry in general. I tell those worrying about Alzheimer’s that no one can predict the future; all any of us has is the present moment in which we should make the most of.”

A practicing Jew who until 15 years ago was an atheist, Dr. Cohen shares this story:

One evening an old Rabbi told his grandson about a battle that goes on inside people. He said, “My son, the battle is between two 'Souls' inside us all.

“One is The Nefesh Habahamis (or animal soul): It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

“The other is The Nefesh Hoelokis (or G-dly Soul)It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith."

The grandson thought about it for a minute and then asked his grandfather, "Which soul wins?"

The old Rabbi simply replied, "The one you feed."

“This story and many other ideas have taught me a great deal about human nature,” Dr. Cohen says. “I’ve told my patients that something may actually be worse than Alzheimer’s, and that is worrying about it. They could spend the next 30 years worrying about getting this disease and then be hit by a bus at age 100, and as a result of all their worry they will have experienced a much less enjoyable life.”

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That advice seems much easier to say than follow, I told Dr. Cohen. “Martha and I did find that meditation helped diminish our anxiety. What suggestions do you have for how not to worry?”

“For those who tend to worry,” he says, “I would avoid watching the news or reading the newspaper, or at least limit it. I know some people who have the TV on all the time at home. The media is geared to bad news and has the potential of getting us into the habit of worrying. Some can handle it, others can’t. Remember…which soul do you want to feed?

“But sources of worry can be more complex than that. How I discussed this with my patients depended a lot on their knowledge and sophistication with regard to psychological issues. Typically, though, I would explain the relationship of emotions to their sources—that is, to their thoughts and experiences—and teach them how to be ‘mindful’ of these. This is a mental process by which you attempt to be aware of what is occurring in your mind, consciously and subconsciously. It can be difficult to implement but with practice it’s become almost automatic for me. This process can help you uncover the underlying issues.

“Sometimes, though, these underlying issues can be subtle and deep-seated, triggering subconscious and conscious thought from one’s past experiences. The best example here is a post traumatic stress disorder (PTSD) for someone who’s been in combat.

“I have a dear friend who was in Vietnam and who is a physician in St. Petersburg. The first time he went to Bayfront Medical Center, the trauma helicopter was landing on the hospital roof. He immediately threw himself to the ground and started to look for his rifle. In Vietnam he and his mission team were getting into their helicopter when they were ambushed by the North Vietnamese. Their team leader was shot in the chest and died in my friend’s arms. Fortunately with his training, my friend understood exactly why Bayfront’s helicopter triggered this alarming reaction and he was fine after that.

“Here’s another example, a personal one.  When we moved here, I was 40 years old and my girls were four and five. One of them had a homework assignment that involved using white paste in a jar with a brush in the lid. When she opened the jar of paste, I got a whiff of the smell and immediately became nauseous and vomited. Fortunately, I was in touch with my subconscious thoughts and realized that an experience from my first grade had been triggered—I had been physically and psychologically abused by my first grade teacher. Realizing the cause of my nausea, the odor of that white paste didn’t bother me again.

“I understand all this can get complicated. My final advice would be that if worry, fear, anxiety, or depression is impairing your behavior and relationships, a professional counselor could be of real help.”

Dr. Cohen, 71, is rather unique among neurologists. He spent the first nine years of his career in neurological research at Johns Hopkins and then decided to go to medical school there. He subsequently opened his practice in St. Petersburg, where he retired last fall after 31 years. His residency was in both pediatric and adult neurology, but his practice was mostly adults.      

As a caregiver too often frustrated over the course of 17 years, I’ve seen little or no advance in reversing the course of Alzheimer’s. (Martha had just turned 50 when diagnosed in 1997; our three children were still in high school and college.)

Dr. Cohen disagrees with me. There’s a better understanding today, he says, of what he calls the “mechanics” of the disease. After many failed clinical trials, “we understand much better the bio-chemistry genetics, the patho-physiology, and the neuro-pathology. This knowledge will eventually lead to effective treatment and prevention.”

Don’t ask me to interpret what he just said. I’ll take Dr. Cohen’s word for it and be glad that someone in the know sees progress being made, however slow and hidden to this layman’s eye.

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I have more questions for Dr. Cohen…

Me: I saw a headline not long ago: “Burnout among caregivers is rampant.” Are you seeing any advances by the medical community in addressing not only the needs of those disabled by Alzheimer’s but also their caregivers?
Dr. Cohen: This is gradually changing in a positive way. When I contrast my daughter’s medical education to the one I received there is much more emphasis today on the psycho-social aspects and psychological needs of patients and caregivers. However, I think medicine still has a long way to go.

It’s highly dependent on the particular medical personnel involved in the care. Many physicians are attuned to these needs of patients and families and help as much as possible. Unfortunately, some physicians are highly educated ‘technicians’ who pay little attention to the psychological, emotional, and spiritual needs of patients and families.

A major obstacle is the pressure that physicians are under to see more patients in less time. Medicine has become an industry, and more and more doctors work for hospitals and corporations where the bottom line is too important.

Me: How critical is a correct diagnosis? If someone is losing their memory and thought processes, what difference does it make what you call it?
Dr. Cohen:  It’s extremely important because there are other entities that can mimic Alzheimer's disease, which often are treatable. A thorough history and physical examination, along with a neuro-psychological evaluation, can be useful in coming to a correct diagnosis. It’s important to see a neurologist or psychiatrist who’s experienced in making the diagnosis.

I once saw a healthy man in his 70s who was told he had Alzheimer's disease. His wife already had started looking for a nursing home. When he came to me and I went through his complete medical history and medications, I discovered that he was over-medicated with one of his prescriptions. That was causing his confusion. When this medication was stopped he quickly returned to normal. Sometimes sleep apnea, which is very easy to fix, can cause significant memory problems, and so a sleep history needs to be taken.

Me: What do you suggest for those in their 30s, 40s, 50s, and 60s as to things they could do now to possibly ward off dementia, or at least improve the odds?
Dr. Cohen:  No one knows for sure. However, my bias is that one should have a basically healthy and enjoyable life as much as possible. I doubt that any specific dietary or lifestyle changes will make a difference. Regular medical care is important because other things can contribute to Alzheimer's disease and make it worse.

It’s also important to “not worry about it," as I’ve told many patients who one day couldn't find their keys or purse and start to think, ‘Oh my, this may be the beginning of dementia.’ Or every time there is a slight memory lapse, such as a word or a name, they become quite anxious.

Me: I’ve seen the distressing statistics regarding Alzheimer’s in the U.S. Such as 22-million people directly affected today, including those with the disease and their family caregivers, according to the latest figures from the Alzheimer’s Association. 28-million are anticipated by 2025 if there’s no intervention. To what do you attribute this epidemic growth?
Dr. Cohen: I take all statistics with a grain of salt. You know the old saw: “There are lies, damned lies, and statistics.” It’s impossible to control all the variables with human conditions. Such increases cited are related to several factors. First, the medical community is much more aware of the diagnosis. Secondly, we have a population that is getting older and this is an illness that largely affects older individuals. Also, while the prevalence of the disease is probably increasing, we have no way of knowing the effect of future discoveries, which could certainly decrease or eliminate this terrible illness.

Me: You may remember when Martha was diagnosed in 1997 that aluminum was the buzz as a possible cause of Alzheimer’s. I threw out all our aluminum pots and pans and searched high and low before finding a deodorant not containing aluminum. But within a year or so that was debunked.
Dr. Cohen: Exactly. I know a lot of people who did what you did. It was a flawed study. 

Me: Why do you think two out of three Alzheimer’s victims are women?
Dr. Cohen: I have no idea.

Me: When Martha moved into a nursing home, she was unable to talk and take care of herself, and soon was unable to walk. Do you think someone still retains their “personhood” when reaching such a stage?
Dr. Cohen: Just because someone can no longer interact and function in ways that we consider “normal” doesn’t mean that they have lost their humanity. We have no way of knowing how much these individuals understand and this makes it even more important to approach them with kindness and compassion.

For example, I saw a video of a man who was lethargic and incapable of communicating and caring for himself. The staff discovered the music that he liked and started playing it for him. His response is remarkable. (You can see that video clip by clicking this link.) 

Me: Much of my life I thought illnesses and diseases were physical issues that needed to be addressed as such. I suspect I’m not alone in what I thought. But our experience with Alzheimer’s showed me that emotional, psychological, and spiritual issues also were embedded, not only within Martha but also within our children and me. Things like bitterness, depression, impatience, alienation, stress, anxiety. What impact do you think these kinds of issues—whether positive or negative—can have on the brain and nervous system as well as on the body?
Dr. Cohen: They can have a marked effect. The stresses of modern life, for example, can make the symptoms of dementia worse because of anxiety and/or depression. Many excellent books are written on this. A couple of layman-friendly ones are The Stress of Life by Dr. Hans Selye and The Divided Mind: The Epidemic of Mindbody Disorders by Dr. John E. Sarno.  

Me: To be told, “You appear to have Alzheimer’s disease,” can be a shock not only to the person receiving the diagnosis but also to their loved ones. It certainly was for Martha and me. What are the initial comments you might say to the patient and their prospective caregiver?
Dr. Cohen: I tried to sense what the patient and family needs to hear. Some need to go into a place of denial for a while, and for others knowledge is helpful. I tried to let the patient and family lead the discussion, and I did my best to reassure them that this diagnosis doesn’t mean their life has ended.

(Note: If you’ve read my book, you may remember that when Martha and I were told she has Alzheimer’s, I described the doctor as being stiff, formal, cerebral, and cold. Dr. Cohen was Martha’s doctor and had tested her, but on the day we were scheduled to get the test results, he’d been called out on an emergency. Another doctor handed us the results.)

Me: You grew up in Chicago in a non-practicing Jewish home. You considered yourself an atheist until you encountered an approach within the Jewish tradition that struck you by how closely it echoed the basic principles of psychiatry. Apparently that caused you to reevaluate your faith in a deep, continuing way. Did this have any impact on the way you approached a patient and their caregiver? Not the medical evaluation so much as, say, your “bedside manner”?
Dr. Cohen: Absolutely yes. I always considered myself compassionate. However, through studying Judaism I was presented with excellent role models and ideas as to why compassion is so important. I also was able to see medical care in a much broader human perspective.

Thank you, Dr. Cohen, for making time to share your insights. I suspect many readers will find these informative and helpful.

~~~~~~~~~~~~~~~~~~~~~~ 

I had an enjoyable conversation recently with two journalists on New York City’s Catholic TV network. I was able to share highlights of our family’s 17-year odyssey through Alzheimer’s. If interested, you can watch it on this program called ‘In the Arena.’

Thanks for tuning in,
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

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

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

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Using these stamps one-by-one can add up: the cancer fundraising stamp to date has raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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What More Is This Doctor Doing About His Early Dementia?

“I’m a whole lot better than I was two years ago. I haven’t felt lost this year. In fact, I feel like the old me.” This is Dr. David Compton in our most recent conversation.  

“When I was diagnosed, I was thinking, ‘I’m going to get worse’. I thought I was doomed. Well…screw that.”

Two years ago, David said he’d been diagnosed with an early form of Alzheimer’s disease, but now he says more specifically it is a condition called MCI, or mild cognitive impairment, which can put one at an increased risk for Alzheimer’s or other dementia.  (For those unfamiliar with MCI, the term “mild” can be misleading.) If you’ve been reading my blog you may remember David’s two previous conversations, one a year ago and the other two years ago in the spring of 2016, not long after he was forced to step aside from his 30-year practice in family medicine.

This most recent conversation is refreshing. David’s energy, focus, and coherence surprised me. “My words and thoughts no longer are a scramble,” he says. “Most times they are clear and make sense to me.”

Dr. David Compton (center) with two friends at Knoxville’s Women’s March

Dr. David Compton (center) with two friends at Knoxville’s Women’s March

I won’t repeat our two previous conversations, but to draw a quick connection: David and I grew up in the same small Tennessee town, Cookeville. We knew each other but weren’t “buddies”—he’s nine years younger than me. His older sister Susan and my younger sister Alice were good friends. David, 63, now lives outside Knoxville; his family practice was in Oak Ridge.

David points to a couple of catalysts for his change in outlook. First, his geriatric medical specialist last August prescribed Aricept, which can help delay the onset of dementia symptoms in some people. (This is the only med he’s taking.)

The other was the “pointing-the-bone story your friend in Australia tells.” I’d sent David a set of tapes in which the Anglican Canon Jim Glennon shares his experiences from decades in the healing ministry. I also describe this story in my book A Path Revealed (p. 83) and in an earlier blog post. In this story, Canon Glennon described a longstanding practice among Australia’s Aboriginal tribes. If a man broke a taboo, the tribal doctor came to him, pulled the leg bone of a bird from a bag, and pointed it at the man. Thus, ‘pointing the bone.’ And that means, Canon Glennon said, “that because the man has broken a tribal taboo, he is going to die. There are documented cases of him falling down dead at once. He will almost certainly die within a few days because he believes he’s going to die.” 

And the point of this story? “We all have faith,” Canon Glennon continued. “And if you believe that you’ve got a disease that’s fatal, that’s your faith. You believe you’re going to die.” 

&nbsp;The ‘Love Kitchen’ where David volunteers on &nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Tuesdays

 The ‘Love Kitchen’ where David volunteers on       Tuesdays

Many diagnosed with MCI eventually slip into Alzheimer’s or another dementia, but not all do. “That’s me,” David says. “I believe I’m going to get better, or at least not worse.” 

Belief, positive or negative, can be a powerful cognitive exercise, he says. “Believing that you’re going to get better can lay down positive neural pathways in your brain. But you’ve got to believe it; you’ve got to be intentional.” It’s important, he adds, to understand how these pathways are developed.

Since his diagnosis in 2015, David has scoured the medical journals regarding MCI, Alzheimer’s, and other dementia. “There’s still a lot we don’t know.” He’s also studied cognitive development and the practice of “laying down neural pathways” through cognitive exercises.

For example, he says, “Activism helps me cognitively. My soul is activism; it always has been.”

He ticks off a few activities he’s involved in: volunteering weekly in an urban kitchen; meeting new friends at environmental and political rallies; going to lectures; supporting others in his support group.

“A commitment to something greater than yourself is energizing. “This is a major reason why I got into family practice—I wanted to help.”

“I’ve been reading a lot of American history lately, and I believe we are at a dramatically critical point in our history,” says this family doctor-turned-activist, who in junior high became intrigued with Henry David Thoreau and his writings on civil disobedience.

&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Three of David’s many photos from his hikes

           Three of David’s many photos from his hikes

Now you, dear reader, may not be ready to step into marches and civil disobedience as David says he is, but the point he’s making is this: It’s vital to discover what energizes you and do it, if at all possible. Find your passion and jump in. It can be a powerful cognitive exercise.

Nonetheless, David says he’s always looking to keep himself in check, to not pump stress into his life through over-committing or obsessive behavior. “I still get upset real easy over little things and have to reel myself back in. I still have my bad days and have to work out of them.”    

“Every little thing I do each day is a cognitive exercise. While trying to go to war with this situation or illness, I’m aware that I’ll have off days. But with that in mind, I must stay true to the course.” 

He ticks off some of his own positive cognitive exercises: regular physical exercise, such as walking; attending lectures; reading essays and journals; meeting new friends at rallies; regular conferences with his cognitive therapist and geriatric specialist; working weekly in an urban kitchen; photography; planning and cooking family meals.  

Two years ago he was walking five miles a day, but arthritis has forced him to cut back. Nonetheless, “I still get 30-40,000 steps in a week.”

“I’m convinced that if you don’t put in the work, you’re not going to get better.”

“Stress damages,” he says. “Wrong diet damages; accepting your fate damages; sitting at home watching TV damages; feeling sorry for yourself damages.”

David at an Alzheimer’s Tennessee fundraiser walk with a new friend, former UT football coach Phil Fulmer

David at an Alzheimer’s Tennessee fundraiser walk with a new friend, former UT football coach Phil Fulmer

David lists other Do’s and Don’ts drawn from his years of experience as a doctor and from working with his cognitive therapist and geriatric specialist. These may be of value in your own efforts, either as one diagnosed with a dementia or as a care partner...

  • Stay on a routine without obsessing over it. “Getting off my routine confuses me, which makes me depressed. So BALANCE is important.”
  • If someone with MCI or early onset Alzheimer's can find a support group of like- minded (pun intended, he says) people, get in that group and stay with them. Support each other!!
  • Control health issues like blood pressure, blood sugar, sleep apnea, anxiety, and depression. All are related to early cognitive decline if not controlled. 
  • Commit but don’t over-commit. Don’t obsess.
  • Work regularly with a counselor or cognitive therapist as much as you’re financially able; set up a program together and then do it.
  • Change your inner dialogue: “I’m going to get better, not worse.”
  • Immerse yourself into a fun, stress-free hobby, such as photography, art, woodcarving, writing, or music.
  • Don’t isolate yourself; get involved with your family and friends. Make new friends.
  • Realize everything you do is a cognitive exercise. Lay down positive neural pathways; avoid the negatives. 
  • Avoid stressful situations.
  • Be courageous as a community of caregivers and patients.
  • It’s a marathon, not a sprint. “There will be failures but I must keep trying to find the things I can do and do them.”

David emphasizes that his protocol is not anyone else’s. His ideas may be helpful to others, he says, but it’s imperative for others to work out their own programs with their neurologist/gerontologist and therapist/counselor. He says he likes to share his thoughts publicly as a mirror for his own feedback as well as a way of encouraging others.

“I’m having a good year right now. What will next year bring? I don’t know, but I’m not focused on that. I’m focused on following the protocol we’ve developed, and enjoying my activities while enjoying my family and friends.”

Thank you, Dr. Compton. I’m sure many will find good information and hope from your experience, both professional and personal.

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.

A Path Revealed.Hi-Res-9%.jpg

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

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. To see how using these stamps one-by-one can add up, the cancer fundraising stamp has to date raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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