What Would I at 77 Tell Myself at 47?

My son David, who’s now 47, asked me the question above. What follows is my response. I posed a similar question to myself when I was 70, a couple of years after my wife Martha died. This question this year has the benefit, or not, of seven years of seasoned reflection. If you find any value here, embrace it as you will. If not, you know where File 13 is.

Dear David,

First, some context. I was 47 in 1992 and your Mom was 45. You and Rachel were still in high school and Kathryn was in middle school. My regional business magazine was eight years old and expanding, yet also growing in debt. Martha was a few years out from having served on the St. Petersburg City Council. Yes, that council—the one that approved building a domed stadium (now called Tropicana Field) designed for a Major League Baseball team with no team in sight. She often said, “I can’t run for an elected office again unless we get a team.” An expansion team, now called the Tampa Bay Rays, finally was announced for St. Petersburg in 1995, about a decade after Martha left the council.  

All in all, our family was little different from many others, enjoying good times and some bad, but mostly good. Then 1997 hit, a year after Martha had run for an open seat in the Florida State Legislature and lost by 23 votes. The date September 23, 1997, is burned into my memory: “I’m sorry, but it appears you have early onset alzheimer’s disease,” a neurologist told Martha. Our world was not turned upside down by this news, it imploded before us.

Top to bottom: Martha in better times; Rachel’s family today; Kathryn’s family; David’s family

As I reflect on this, David, my thinking shoots off in so many directions, but I’ll try to narrow down to a handful of thoughts, some coherent, others not so much. As I talk to me at 47, I find myself also talking to me at age 77. Much of what I’m sharing has come out of the hard work and stress of those volatile 17 years of caring for Martha and from subsequent years of reflection following her death nine years ago in June 2014.

I’m fully aware that the crisis we endured mirrors millions of other families who have had to endure their own unique stresses and burnouts from one form of dementia or another—even from entirely different kinds of crises—including many who may be reading this. Their stories are as unique to them as ours is to us and their faith traditions may be different from mine, but we can still learn from each other.

As I talk to myself at 47, David, I’ll be sharing a give-and-take conversation between me now and myself 30 years ago. So here goes:

Carlen at 47: What would you share with me that would be worth knowing at this stage in my life?

Me at 77: Carlen, you and Martha have been living by your wits, your intelligence, your emotional impulses, and your willpower, drawing on all these traits as the situation demanded at home, with the kids, at work, in your social circles, and in the political and civic arenas. You encountered few, if any, problems that you weren’t able to resolve one way or another. All this was fine, but it did little to prepare you for the crisis that lay five years out. 

You’re quite busy, aren’t you, Carlen? You’re working 60, 70, even 80 hours a week trying to keep the magazine moving ahead, if not afloat. By design, you’re the face of the Maddux Report, but I’m not sure you understand what that means in terms of the demands of time, effort, and financial risks. You have an embedded fear of failure and a need to please others, don’t you? Just how are you dealing with the stress that all this can generate in you? Not to mention the demands at home. Do you not understand the long-term consequences of absorbing such stress with few or no safety valves?

Cover of our magazine’s 20th anniversary issue, March 2004. The magazine closed June 2010.

This is probably the greatest thing I can share with you, Carlen. First, there is no way that I know of to prepare explicitly for the consequences of a crisis like alzheimer’s, or bankruptcy, or a heart attack, or the loss of a child or loved one, or whatever. Yes, you can take certain steps like a good diet, exercise, protecting your savings, etc. But those are rather limited in addressing the emotional and psychological tolls such crises can exact.

Carlen at 47: I’m not sure what you mean. 

Me at 77: Do you remember what Mom used to say? “Take time, Carlen, to smell the roses.” You didn’t understand what she meant, did you? Amid all your busy-ness you need to learn to build in what I call ‘emotional and spiritual shock absorbers. Heavy-duty shock absorbers.’ 

Do it now. Don’t wait until a crisis hits. Very few people are fortunate enough to avoid a serious crisis at some point in their lives.

Carlen at 47: Can you be more specific?  

Me at 77: As I look back to my post from seven years ago, I laid out some actions that can help build in such shock absorbers prior to a crisis: 1) Be willing to forgive others AND yourself—quickly; 2) Take time to be quiet and still with Martha and yourself—while you’re both still healthy; 3) Experience God intimately and not as some mere religious belief. I won’t repeat myself here other than to say that forgiveness, or its lack, can be a matter of life and death, of good health or ill. I’ve learned the hard way that bitterness and unforgiveness make up a major portion of emotional, psychological, physical, and mental stress.

Carlen at 47: I guess you’re right. I’ve always viewed ‘forgiveness’ as some religious admonition that I should get around to sooner or later. Rather than something that could have a direct bearing on my health and wellbeing. Anything else? 

Me at 77: Give the practice of meditation serious consideration. Now, while you and Martha are young and quite healthy. Martha and I were introduced to this practice not long after her diagnosis 25 years ago, when she was 50 and I was 52. It’s a gift that keeps on giving.

Carlen at 47: I understand this is significant to you, but in what ways?  

Me at 77: I learned much of what I know about meditative prayer from the late John Main’s classic little book, Word into Silence. His protégé Laurence Freeman of the World Community for Christian Meditation (WCCM), describes meditation this way: “Life’s weather being so unpredictable is why we should fix the roof while the sun is shining. Even if it leaks again during storms, damage is reduced. Meditation builds resilience.” That’s as good as I could express it. 

Carlen at 47: But I’ve never been aware of meditation other than in some New Age-y kind of way. I do remember the Beatles being all into it when they returned from India, touting their newfound ‘guru’ and their ‘mantra’. I also heard this was something monks and nuns do.   

Me at 77: I know, I know, some people are put off by the words ‘meditation’ and ‘contemplation’ and ‘mantra’. So let me try to explain with the most extreme example I remember: Those moments during our 17-year odyssey through alzheimer’s that I would see my heart and mind—all of me, really—fractured into a thousand pieces around my feet. “Caring for Martha, running my magazine, caring for our children is just TOO MUCH. What a hopeless mess,” I cried! But as I continued this practice of contemplative prayer—which had been so unknown and strange to me all my life—a sense of wholeness, a fullness, often would come over me. I felt alive again. Alive inside and alive with the world and people around me. Rarely did this happen immediately but over time it did.

Here's one other example of how meditation helped Martha and me: We often sat still, side-by-side in the mornings and in the evenings, holding hands, and I would quietly repeat for about 20 minutes the phrase we’d chosen. After a while—and I don’t remember how long “a while” was—Martha’s anxiety and mine began to lift. Yes, I still worried about our future, but not nearly so much. It felt like each time we meditated we were choosing to transfer our dark and scary, unknown future from our shoulders to what I can only describe as God’s Presence.

Carlen at 47: So you’re continuing this practice even now?

Me at 77: Yes. Some folks have wondered why I still practice meditative prayer now that Martha is gone and our crisis has lifted. To put it simply, meditation works for me. It is no magic potion. I keep discovering within me dark, deserted wastelands—stuff like bouts of fear and loneliness, lack of purpose or meaning, anger, and yes, even spells of guilt and grief. All traits and feelings that need infusions of God’s life, love, and direction. Three steps forward and two back, as they say. I don’t have time to enumerate all the ways I’ve benefited, but I can share a few that this practice of meditation, woven through the practice of forgiving and forgiving quickly, does help: 

• During our 17-year odyssey, it helped me to step into Martha’s world when she was unable to express herself or articulate her needs. It helped keep me from arguing with her when she asserted nonsensical statements.  

• It helps me to laugh at myself and to be gentle with myself. To love myself while opening my heart to those around me.

• It helps me to see my good traits and bad while learning to be captive to neither.

• It helps release me from my obsessions and addictions.

• It helps diminish my anxieties and fears.

• It helps expose and diminish the perfectionism, the self-centeredness, and self-righteousness that I so naturally grew up with.

• Finally, it helps awaken the inner child in me.   

Does this practice of meditating 20 minutes in the morning and 20 minutes in the evening resolve all my issues? Of course not. But it does help clear my heart and mind to address such issues in a different, more creative way. Meditation, along with learning to forgive, does help me to focus on God’s love and healing nature rather than on the pain and darkness and dullness that on occasion arise within me, those wastelands that I referred to earlier. They have helped soften the hard shell of my ego by allowing Christ’s healing light to emerge within, to be attentive to God’s Presence so I may be attentive to myself and those around me. Over a period of time I sense a refreshing of my heart and mind.   

Even today, 25 years after Martha was diagnosed, I still don’t understand all the lessons thrust on our family during our often difficult 17-year odyssey. But as I reflect on this period, Carlen, and reflect on the practices I’m still learning, this stands out more than anything…

Meditation and forgiveness, along with other contemplative practices, are silent expressions of failure and hope. I better understand now that my failings, real or supposed, form the ground from which God’s healing Life and Love can grow and flourish, grow in ways that I’ve not otherwise experienced.

There is one other thing I would add that was so important to me through our 17-year odyssey: Try to find a mentor(s) as you move along the path before you. Several showed up for us at just the right moments. How? I don’t know other than to say I think it was the unfolding of God’s grace. I’m really glad they did show up. 

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

This has been a rather long-winded response to your question, David. There are quite a few other things I could share, but I won’t for now.  While I do see these changes evolving within me, you and your sisters and our friends may beg to disagree. LOL.

I hope this makes some sense. Take from it what you will.  

I love you, David. Rachel and Kathryn, too.

++++++++++++++++++++++++++++   

And to those who are reading this post, I say the same: Take from this conversation what you wish. THIS IS MOST IMPORTANT: My approach in seeking to avoid burnout and being trapped in an insidious darkness may not be yours. However, I strongly encourage you to discover an approach that does work for you. And to find a mentor(s) and/or a support group who can help you along the way. 

By the way, you might try writing to yourself at an earlier age. It doesn’t have to be polished or for anyone but yourself. It’s crazy what can pop up in your mind and heart.    

Thanks for listening. Feel free to contact me and feel free to forward this post to anyone you think might find it of interest.

Carlen Maddux

carlen@carlenmaddux.com

www.carlenmaddux.com

PS1 I continue to buy several sheets at a time of the Alzheimer’s semi-postal, first-class forever stamps ($15 for a sheet of 20). As you know, the net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of December 2022, 10.5-million stamps have been sold, raising over $1.3 million for research. Join me and thousands of others to Help Stamp Out Alzheimer’s. If you can’t find the stamps locally, you can order online by clicking here.

PS2 If you’d like to sign up for my blog, there’s no charge; just click here. (If that doesn’t work for some reason, you can always email me direct at carlen@carlenmaddux.com, Subject Line: Add to Blog. And I will manually add you to the list.)

PS3 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can still be found on Amazon and other online book stores. I share our family’s 17-year odyssey of living with this disease. 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.

A Conversation Worth Your Time

This upcoming conversation and study may well be worth your time and involvement. I know I would have loved to have had access to this kind of informed experience and support when my wife Martha and I were in the thick of living through Alzheimer’s for 17 years.  

Rev. Dr. Ken Carder is uniquely experienced to discuss the emotional and spiritual issues that can impact families living through dementia—those diagnosed with one form or another and those who are their primary caregivers. You may remember Ken from my post three years ago…Emerging from a Hard Season of Pandemic, Dementia, and Death. He’s a retired Methodist Bishop and Professor Emeritus at Duke Divinity School.

Equally important, if not more, Ken cared for his wife Linda for 10 years after she was diagnosed with an aggressive form of dementia, called ‘Frontotemporal Dementia.’ Linda died in October 2019. Ken obviously shares from hard-earned experience. We have become good friends staying in touch with each other every month or so.

Ken and Linda in better days

Starting in February, Ken and Rev. Dr. Scott Hughes will again be offering a significant three-month study and conversation on caring for loved ones with dementia. The basis of their discussion will be Ken’s book, Ministry with the Forgotten: Dementia through a Spiritual Lens. The study is focused on helping caregivers—family and professional—as well as pastors and faith community leaders, and congregational care staff. I’ve read and studied Ken’s book and it’s worth every penny.

I see that some of the main outcomes of this conversational study include:

1. A basic understanding of dementia and its prevalence in our culture.

2. An ability to reflect on dementia not only as a spiritual challenge but also as an opportunity.

3. Developing a sensitivity to seeing the person who is alive and well inside one with dementia, even though they may be unable to talk or remember.

4. Learning ways that you may be able to step into the world of those with dementia.

5. An understanding that caring for those with dementia does not have to lead to burnout. It often can be a catalyst for being drawn more deeply into God’s Presence and Love.

6. Helping a caregiver see early on, rather than as an afterthought, that their church or faith community can be a place of comfort and support. Meanwhile helping faith leaders reframe their care ministries so that dementia care can become an integral part of their church ministry, rather than being a forgotten need or one out on the periphery. Believe it or not, those with dementia can offer gifts to their faith community.

These and more are hard lessons for caregivers and church leaders to learn even when learning from a group like this being offered by Ken and Rev. Hughes. I spent a lot of time on my own spinning my wheels while looking in a thousand directions for such help and insight.

For a full description of this study and to pre-register (it starts sometime in February) go to this link… United Methodist Church’s Discipleship Ministries. Psst…it offers access to a deep discount on Ken’s book.

By the way, if you don’t have three months to give for this, I think it would still be worth signing up for in order to listen in when Ken personally participates on three zoom meetings. He tells me that he also will answer as best he can any emails sent to him.

Please do give this conversational study serious thought if you’re deep into caring for a loved one. Or if you’re involved in pastoral care.  

Thank you.

Carlen Maddux

carlen@carlenmaddux.com

www.carlenmaddux.com 

PS1 Feel free to forward this post to anyone you think might find it of value. 

PS2 An inexpensive way to support the end of Alzheimer’s is to buy several sheets of the Alzheimer’s first-class, forever stamps ($15 for a sheet of 20). As you know, the net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of December 2022, 10.5-million stamps have been sold, raising over $1.3-million for research. Join me and thousands of others to Help Stamp Out Alzheimer’s. If you can’t find the stamps locally, you can order online by clicking here.

PS3 If you’d like to sign up for my blog, there’s no charge; just click here. (If that doesn’t work for some reason, you can always email me direct at carlen@carlenmaddux.com, Subject Line: Add to Blog. And I will manually add you to the list.)

Two Meditations for This Season

I’m reading and reflecting on the writings of the late Howard Thurman, from his book Meditations of the Heart. If you’re unaware of Rev. Thurman, he’s well worth getting to know. As far as I know he never had to endure a crisis like Alzheimer’s or dementia. But endure crises he did. He grew up in Daytona Beach, FL, the grandson of former slaves. He had to travel to Jacksonville to attend high school because Daytona had no school for persons of his race. That was only the early years of the hatred he would face over the course of his life (1899-1981). Among his many roles, Thurman was a spiritual mentor to Martin Luther King Jr. and other leaders. The late Congressman John Lewis described Thurman as the “patron saint” of the Civil Rights movement.

Boston, MA portrait of Howard Thurman, September 15, 1958; Photo by Boston University Photography

The thing about relentless crises—crises like Alzheimer’s and racism and poverty and debilitating cancer—they are not the same, yet they are the same. They are the same in that they can shake the very foundations of your life while imploding the emotional framework you’ve built over a lifetime. How Thurman and other civil rights leaders survived the barbs, bricks, and threats thrown and spit at them—not to mention the lynchings and killings—is a testament to their seeing some fundamental Reality beyond the reality of the moment…while not denying that moment’s reality.  

Thurman sent a copy of his book Deep River to Dr. King and his wife Coretta. In it he inscribed: “To the Kings—The test of life is often found in the amount of pain we can absorb without spoiling our joy.”

If that’s true—and memory serves me quite well—I often failed that test. And I suspect you have too as you’ve traveled through your own odyssey with dementia and Alzheimer’s, or whatever personal crisis. Yet such a “test” resonates within me for there was something beyond me and our family, some inexplicable force, that was encouraging us to get back up, to step back on to the path after we received the news in 1997 of my wife’s Alzheimer’s at age 50…after I had to take Martha’s car keys away…after her first seizure…after Martha needed to move into a memory care facility.

As we traveled through our often dark, 17-year odyssey, resources beyond mine were required to pull us back onto our path. How best do I describe this? Somehow, from somewhere, those resources emerged from a transcendent, mysterious force I know as God.

So bear with me as I try to connect two of Thurman’s meditations with our family’s experiences, and in so doing maybe they will connect with yours. The connections are at best emotional echoes and not taut lines of logic—deeply resonant, emotional echoes. In Thurman’s two meditations below, two phrases hit me with a gut-punch:

The first one: “The silent storm-swept barrenness of so great a loss.” Do I need to explain that to you who may be going through your own trauma? I doubt it.

The second one: “The weakness that engulfs me in its writhing toils…” If ever a phrase more aptly describes the ever-changing, volatile symptoms of Alzheimer’s than “being engulfed in writhing toils”, I’ve yet to see it.

If you take time to read these meditations, which I certainly hope you do, please read them aloud to yourself—slowly, slowly—letting his words sink in ever more deeply. (If you’d like to hear Thurman’s voice, you can find an example in his lecture on “What Do I Want, Really?” Listening to an author’s voice, or a poet’s, often adds a fuller dimension of meaning to what I’m reading.)

Reading these two meditations seem to fit perfectly in this season between Thanksgiving and Hanukkah and Christmas. They are filled with great grief, great empathy, great joy, and great comfort.

The first meditation…

For a Time of Sorrow

I share with you the agony of your grief,
The anguish of your heart finds echo in my own.
I know I cannot enter all you feel
Nor bear with you the burden of your pain.
I can but offer what my love does give:
The strength of caring,
The warmth of one who seeks to understand
The silent storm-swept barrenness of so great a loss.
This I do in quiet ways,
That on your lonely path
You may not walk alone.

The second meditation…

Surrounded by the Love of God (With a few edits by me for clarification)

I am surrounded by the love of God. The earth beneath my feet is the great womb out of which life comes in utter abundance, the life upon which my body depends. There is at work in the soil a mystery, a mystery by which the death of one seed is reborn a thousandfold in newness of life. The magic of wind, sun, and rain creates a climate that nourishes every living thing. It is law, and more than law; it is order, and more than order—there is a brooding tenderness out of which every living thing comes. In the contemplation of the earth, I know that I am surrounded by the love of God.

The events of my days strike a full balance of what seems both good and bad. Whatever may be the tensions, the stresses of a particular day, there is always lurking close at hand the trailing beauty of forgotten joy or unremembered peace. The weakness that engulfs me in its writhing toils reveals hidden strengths that could not show their face until my own desperation called them forth. In the contemplation of the events of my days, I know that I am surrounded by the love of God.

The edge of hope that constantly invades the seasoned grounds of despair, the faith that keeps watch at the doors through which pass all the labors of my life and heart for what is right and true, the impulse to forgive and to seek forgiveness even when the injury is sharp and clear—these and countless other things make me know that by day and by night my life is surrounded by the love of God.

I am surrounded by the love of God.

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

May this indeed be a season of deeply meaningful joy and light as you travel your own road that too often can be dark and lonely. And may you remember “that on your lonely path you may not walk alone” while your “hidden strengths are revealed when your own desperation calls them forth.”

I hope you can hear Thurman’s echoes of joy and comfort as I do.

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

PS1 Feel free to forward this post to anyone you think might find it of interest. I’m stocking up on Alzheimer’s stamps for Christmas/New Year’s cards that I’ll be sending out. An inexpensive way to support the end of this disease is to buy several sheets of the Alzheimer’s first-class, forever stamps ($15 for a sheet of 20). As you know, the net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of September 2022, 10.2-million stamps have been sold, raising over $1.3-million for research. Join me and thousands of others to Help Stamp Out Alzheimer’s. If you can’t find the stamps locally, you can order online by clicking here.

PS2 If you’d like to sign up for my blog, there’s no charge; just click here. (If that doesn’t work for some reason, you can always email me direct at carlen@carlenmaddux.com, Subject Line: Add to Blog. And I will manually add you to the list.)

PS3 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon and other online book stores. I share our family’s 17-year odyssey of living with this disease. 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.

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

It’s been a long time since we’ve been in touch with each other. My apologies. I’ve been dealing with some personal medical issues along with, as have you, this #&!?# pandemic. Yet frankly this break has helped provide me with a fuller, richer perspective into our family’s experience with alzheimer’s. This song or “ode” has been growing within me for a while. It’s in honor of those among us who are living with, or who have lived with, alzheimer’s. But it’s also for anyone living through any relentless crisis.  

For those who don’t remember, my wife Martha was diagnosed with early onset alzheimer’s in 1997, at age 50; I was 52; our three children were still in high school and college. That seems like only yesterday, yet so long ago.

Our children with Martha at a younger and happier age

The odyssey that unfolded for us was long and hard…but ultimately deeply meaningful. There’s this about such an odyssey: You wake up one day in a strange and foreign land. You’re lost, you’re confused, and you’re hurt. All you want to do is get back home, back home to its comfort and warmth. You’ll go anywhere to get home, you’ll do anything. And when you do get back home—that is, IF you do get home—you find that home is not the same place as when you left. And you’re not the same person.  

Martha and our family lived through 17 years with alzheimer’s, her last six in a healthy memory care facility. She died eight years ago this month, on June 30, 2014. We followed the directions of her neurologist throughout these 17 years. While doing so, I quickly learned that a crisis like this isn’t just about the physical issues; it’s also embedded with emotional, psychological, and spiritual issues, Martha’s and mine. Issues that need to be acknowledged and addressed as best we can to minimize burnout and unwarranted pain while encouraging compassion among all concerned.

I am a journalist, not a poet, but this ode is a gift written from my heart to yours. You may know that I am a follower of Christ Jesus, or you may not. In stating this, I’m not denying another’s beliefs. As I write in my book, “This is not about scoring theological points. It’s about trying to survive, about finding what works and what doesn’t as we move through a dark, inscrutable maze. Words do matter. But the truth behind the words matters more.”

That said, I learned early on the practical importance of meditative prayer for both Martha and me. Over time, meditation helped us to be drawn into God’s presence and love while focusing less on the volatility of this disease, thus reducing our anxiety levels. I also learned to give up the notion that I could handle this alone—a stupid notion that almost broke me. I started paying attention to mentors and counselors who arose along the way while permitting family and friends to support us as they could.

“Be gentle on yourself, Carlen,” one told me. Best advice I got. Still is today.

Our family’s experiences and feelings are not yours, but often there’s enough common ground that we can learn from each other’s stories and insights. If this ode connects with the vicissitude of feelings arising from your experience, may I suggest you read it aloud slowly and softly, substituting your family’s name for ours and, if necessary, replace the word alzheimer’s with whatever crisis you may be going through. If it does not connect, pardon my intrusion.

To hear me recite this ode, please click on this audio link.

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

My Song, My Ode, to Caregivers and Their Loved Ones
Who Live with alzheimer’s
(And to anyone living through a relentless crisis)

Somewhere deep in the wasteland of my soul
A wolf, hungry and lean, howls into the dark of night.
I cry.

I cry for my wife. I cry for our children. I cry for me.
My wife’s behavior can be so erratic, so disjointed.
And at times, so embarrassing.
The life we enjoyed is vanquished.
Our life ahead in this wasteland they call alzheimer’s
Fills me with questions and nightmares.
What do we do? Where do we go?
Where is our future?

What future?

Yet as I cry…
Yes, as I cry, a star above somehow breaks through this thick darkness.
Over a distant mountain, the moon imperceptibly rises,
Shedding its mellow light onto the dry ground of this wilderness.
As I cry, a cool touch of water trickles up through the grime of my feet.
I look, and I see a sprig of green show its head in this thirsty land,
Then another here and another over there.
As I look closely, closely at this barren ground within me,
I see it begin to teem—how can this be?—to teem with life.

My tears of despair slowly glisten with hope.
Hope? Hope for what?
That the wife and mother I’ve known for four decades will return?
That the life we viewed as normal would re-emerge?
That all will be well and healthy?
Yes, I suppose I can always hope for the best.

But the hope I sense brims with something more,
Something deeper.
Slowly, slowly I cry with a certain knowing,
A knowing that Martha and I are loved with a love we’ve never known.
That our David, Rachel, and Kathryn are embraced
By a name called Wholeness,
By a Name many of us know as God.

As I grieve out in this wilderness,
I cry as Job did some millennia ago:
“I’ve heard about You all my life. But now that I see You,
I collapse into the dust and ashes of this desert ground.”
(My interpretation)

I begin to see You streaming through the events of our past.
I see You streaming through our lives today,
Through tomorrow and through the tomorrow after that.
I see You and I cry with a joy that we are free.
We are freed within the Presence of Love unloosed.
We are free to love and laugh,
To be one in You, to be drawn ever more deeply within You.

No longer are we bound by this circumstance they call alzheimer’s. No longer are we barred by our fears and biases,
By the present limits of our minds.
No longer am I bound to my selfish yearnings.
I cry out of the dust and ash of my ego that I—
And that Martha, David, Rachel, Kathryn and their families—
That all are released to grow
Within the Wholeness of your Presence,
This Presence that You have named Love.

Thus. I cry.
Thus. I laugh.
And. I thank You.

What I call Martha’s self-portrait, painted three years after her diagnosis.

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

May God’s light and grace move gently over you and within you as you travel through your own odyssey, as you seek your own ongoing transformation. Thank you for showing the way for so many others through your patience and persistence. Thank you for your deep, deep caring of your loved one.

I hope we may continue our conversation.

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

PS1 June is Alzheimer’s and Brain Awareness Month. An inexpensive way to commemorate this month and to support the end of this disease is to buy several sheets of the Alzheimer’s first-class, forever stamps at 75 cents a stamp. The net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. Join me and thousands of others to Help Stamp Out Alzheimer’s. If you can’t find it locally, you can order online by clicking here ($15 for a sheet of 20).

PS2 If you’d like to sign up for my blog, there’s no charge; just click here. Or if you would like to review my previous posts, click here.

PS3 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon, or on Barnes & Noble, or on other online bookstores. I share our family’s 17-year odyssey of living with this disease. 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.

A Doctor Speaks to the Spiritual Dimensions of Caregiving

“The older I become, the more I see dementia care as a spiritual endeavor. I say this primarily because the majority of persons I’ve observed to be living well—either as ones diagnosed with dementia or their care partners—rely heavily on the spiritual for their sustenance and well-being.” 

Some may consider this a rather curious statement coming from a neurologist. Dr. Daniel C. Potts has been practicing for 23 years, the last eight with the Veterans Affairs (VA) Medical Center in Tuscaloosa, AL. As a generalist, he sees patients who have all kinds of neurological and psychological issues, including PTSD, addictions, mental illnesses, as well as dementia. He’s dealt with well over 5,000 patients suffering from Alzheimer’s or other forms of dementia, and he’s emerged as a leading national advocate for those living with dementia and their caregivers.  

Now 55, Dr. Potts began to explore the spiritual aspects of a disease like dementia after he personally collapsed into a dark hole of emotional and psychological conflicts not long after his father was diagnosed with Alzheimer’s. He shared this experience with us in the fall of 2018 in this post, What His Father Taught This Doctor About Alzheimer’s.  

“I don’t dare try to instruct someone who has walked, or who is walking this road. I realize that the demands or experience of care partnering may make it very difficult to see anything redemptive about it, to consider the spiritual at all in the struggles. And I respect that.”

Nonetheless, he says, “What I have written is shared simply to encourage, to offer a paradigm that I and many others have found to be health- and peace-promoting, and to offer hope that I know is needed by those on this journey.”

Dr. Potts recently wrote an essay titled Thoughts on the Spiritual in Dementia Care. This conversation is extracted from that essay and from our phone discussions. As many of you know, I cared for my active and vital wife Martha for 17 years, starting in 1997 when she was diagnosed with early onset Alzheimer’s at the too early age of 50, and our three children were still in high school and college.

Dr. Potts nor I need to describe to you all the dark spaces, frustrations, anger, hurt, loneliness, and depression that the symptoms of dementia and Alzheimer’s can hurl at you. If you’re one with such a disease, you know. If you’re a family care partner, you know.

You will understand when I describe such an experience as an “odyssey” rather than a “journey”. The word “journey” seems too tame and planned for what our family went through, a path too easy to follow. In the classical sense of an odyssey, you wake up one day in a strange, bizarre land. You’re hurt, you’re confused, and you’re scared. All you want to do is get back home. You’ll go anywhere to get home, you’ll do anything. And when you do get home—IF you do—you find home is not the same place as when you left. And you’re not the same person.

“By honoring the spiritual in dementia care,” says Dr. Potts, “I’m talking about honoring the sacred self in each of us…that central element of ourselves that renders our personhood immune to diminishment by any disease or condition.

“I’m employing a broad definition of the spiritual as having to do with the essential, the inner, the relational, that which promotes growth and not decay; acceptance and not denial; peace as opposed to conflict; love as opposed to fear; trust instead of anxiety; gratitude in contrast to resentment; community versus isolation; creativity as opposed to stagnation; depth not superficiality; compassion rather than heartlessness. Organized religion certainly may fall under this category, but it’s not essential for many persons I’ve encountered.

“Thus considered, this sacred self or personhood becomes the solid foundation upon which to build the structures of dementia care, with the goal of supporting your loved one’s personhood, enabling their expression, and promoting their natural instinct for relationships. This personhood can be found if we cultivate the perception to ‘see’ it. I consider this to be spiritual work of high order.”

Me: How do you cultivate such a perception, Dr. Potts? Can you give us an example?

Dr. Potts: OK, take my father. Not long after his diagnosis, he began to do something he’d never done before. Under the direction of an artist-teacher, he began to paint prolifically with watercolors, and he did so almost until the day he died. My mother and I did everything we could to encourage this new-found talent, and you could almost see a light radiating from Dad, even when he had trouble expressing himself any other way.

One of Dr. Potts’s favorite paintings by his father

CM: Interesting. A similar thing happened with my wife. With the encouragement of our sister-in-law KK, she and Martha entered an art class a couple of years after her diagnosis and Martha produced some pretty amazing art over two to three years. Even more amazing was the unexpected return of her confidence. Her teacher told me, “Carlen, I don’t know where this coloration is coming from; you just can’t teach it.” Singing and dancing also worked wonders with Martha for a while. The impact of meditating together seemed to last the longest.  

Dr. Potts: Exactly. The world of the spiritual is a world of gifts—graces small and large, often unexpected—which can bring uplifts on dark days, and for which one may begin to look, expecting to find these hidden treasures in the secular and mundane. 

CM: So as you discuss these spiritual aspects, you’re not necessarily talking about some particular faith or religion? 

Dr. Potts: That’s true. One may practice the spiritual in dementia care and not know it, or at least not name it, as with Dad’s art and your wife’s. There is nothing wrong with that. However, considering the spiritual as spiritual has some advantages. First, it brings an element of mystery, which you may find to be supportive. This can promote trust in something greater than yourself and in your own powers…which may be greatly taxed in a care partnership. Any caregiver knows it can be exhausting to struggle, often futilely, to exert your own power to control situations that cannot be controlled. Furthermore, considering the spiritual as spiritual may elicit a sense of awe or wonder while fostering humility and gratitude. And not inconsequentially, it can create a sense within you of belonging or fitting into a much larger framework, into a broader realm, which can be a freeing experience. 

CM: As I reflect on our 17-year odyssey, I think the greatest need I felt was this: To know that Martha, our children, and I are loved by our Creator—that invisible Creative Force of everything—that we are loved deeply and intimately in ways we’d not experienced. I so often saw my heart and mind fracturing before my eyes. There were four particular moments in which I felt most alone, guilty, shamed, grieved, and confused: When Martha was diagnosed; when I had to take the car keys away from her; when she had her first full-on seizure; and when she needed to move into a nursing home. During some of these times it was as though I heard a voice whispering to me: “It’s OK, Carlen, you don’t need to be perfect in caring for Martha. Just do all you know to do, and allow me to move through Martha and you; let me heal all the broken pieces within you both.” 

Is this what you’re getting at?  

Dr. Potts: Yes. The benefits of viewing the dementia journey and dementia care as spiritual may indeed coalesce in your wellbeing by reducing stress and its effects; by fostering resiliency; by making something meaningful out of your suffering; by garnering substantial hope and joy despite your loss and grief; and eventually, cultivating a sense of “presence” and “transcendence”—an unbinding or freeing, if you will, of dementia’s constraints as well as your own ego’s.

Martha’s painting titled, ‘Somewhere Over the Rainbow’

Dr. Potts continues: Seeking the spiritual in dementia care means reaching for the depths of your loved one, coming into contact with their core of authenticity. In order to do this, you must find a way to access the same place in yourself, though I believe this initially is not the focus. I believe this inner journey can be enabled through the care partnership, if allowed, and is accompanied by openness, vulnerability, mindful listening, non-judgment and reciprocity, so that your energy and attentiveness are continually renewed.

This can help a caregiver from burning out.

CM: I can relate to that. Our daughter Rachel was very frustrated early on with Martha, and she reminded me not long ago that I told her, “You’ve got to step into Mommie’s world now, Rachel, you’ve got to try to understand what Mommie is trying to tell you, even though her words are garbled and her behavior is confusing.”

Dr. Potts, you’ve obviously given much thought to the relationship between dementia care and its spiritual aspects. I doubt you’re expressing this, though, to the exclusion of all the physical care required of something so volatile as the symptoms of Alzheimer’s and dementia.

Dr. Potts: You’re absolutely right, Carlen. The requirements of the physical needs and their various aspects are topics for another day.

CM: One last question. I do find your perspective unique among neurologists I’ve met or read. The only other one that I know whose view echoes yours is my wife’s former neurologist, Dr. Steven Cohen. Did you learn about these spiritual qualities in medical school?

Dr. Potts: No, I’m afraid not. And not even during my residency program. I began to explore the impact of the spiritual as I emerged from my dark period we mentioned earlier. I’m encouraged a bit that some of the nation’s largest teaching hospitals are introducing these values into their programs. But we have a long way to go.

CM: Thank you, Dr. Potts, for sharing your experience and insights with so many of us. I hope many caregivers find encouragement and strength to draw on these depths as they move forward on their ever-shifting grounds of dementia care.  

Dr. Potts: One last thing. I stand in awe of the loving care I have seen expressed by so many care partners, and the courageous living of persons with dementia. I acknowledge, in deep gratitude, all who have shared such a vision with me. Godspeed, care partners, along your way.

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

Again, Dr. Potts’s full essay can be found here: Thoughts on the Spiritual in Dementia Care. Thank you, friends, for taking the time to read and reflect on what I think is a most meaningful conversation. I suspect Dr. Potts’s insights can apply to many crises other than dementia care.

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

PS1 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 December, over 8.5-million stamps have been sold, raising over $1.09-million. Join me and thousands of others to Help Stamp Out Alzheimer’s. If you can’t find it locally, you can order online by clicking here ($13 for a sheet of 20).  

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. 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.

A Prayer for the Caregiver’s Struggle this Holiday Season

As I mentioned in my June post Let Me Breathe!, you sometimes come across a work of art, a writing, a comment that takes you to an emotional space that may have everything to do with the artist’s idea, or seemingly nothing to do with it.

I’ve encountered another such work that was written back in the 1960s or ‘70s, which I haven’t seen or heard before. I suspect most of us remember the late César Chávez, founder of the United Farm Workers. His Prayer of the Farm Workers’ Struggle is profound in its simplicity.

César Chávez (1927-1993)

As I read aloud and reflect on his prayer, I seek to adapt it to the circumstance in which many of us caregivers have found ourselves. After all, suffering is suffering, regardless of the oppressive force. Here’s my attempt, with apologies to Mr. Chávez:  

A Prayer for the Caregiver’s Struggle this Holiday Season

 Show me my loved one’s hidden suffering;
So I will know her plight. 

Free me to pray for him and others imprisoned so;
For you are present in every person. 

Help me take responsibility for her life and mine;  
So that I can be free at last. 

Grant me courage to serve him, though I’m no longer recognized;
For in service there is true life. 

Give me honesty and patience;
So that I can share with others caring for their loved ones. 

Bring forth song and celebration;
So that the Spirit will be alive among us. 

Let the Spirit flourish and grow;
So that we will never tire of the struggle. 

Let us remember those who have died with such dread disease;
For they have given us life. 

Help us love even when we feel unloved;
So we can transform ourselves, our families, and our world. 

Amen. 

Thank you, César Chávez, for this unexpected inspiration.

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

This prayer that I’ve modeled after Mr. Chávez’s may or may not connect with you. If it does, draw on it deeply. Say it aloud, slowly. Connect emotionally with a word or a phrase. Turn it over in your mind. Allow the spirit of a prayer such as this to move you beyond your point of pain. Don’t rush it or force it. Rest there. As you do, your loved one may begin to reflect your state of mind. At least that happened between Martha and me over the course of our 17-year odyssey through Alzheimer’s. Not every time, but often enough. And it began to embed within my heart and mind a certain resilience, where stubbornness and obstinance had long resided. Such experience is not a one-off thing; as with any other skill, it takes practice.

May this be a truly meaningful time for you, despite the forces swirling around us all this pandemic holiday season. Take good care of yourself and your loved ones. Be safe and be well.

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

PS1 If you’d like to sign up for my blog, it’s free; just click here.

PS2 A good gift this holiday is to give a sheet of Alzheimer’s stamps to a friend, asking them to remember those who no longer can remember. If the stamp is not available at your local post office, you can always buy it online at the USPS store. The net proceeds go to the National Institutes of Health (NIH) for Alzheimer’s research.

Our First Thanksgiving

I don’t remember all the details of our first Thanksgiving after my wife was diagnosed with Alzheimer’s. That period is such a blur. I do remember that all the family gathered at Martha’s parents, and none was aware of her diagnosis except for our three children who were still in high school and college.   

Martha had just turned 50 when diagnosed on September 23rd, 1997. Our world wasn’t turned upside down. It had imploded before us. Martha’s first words to me when we got home were, “I don’t want to tell anyone. Not our children. Not my parents and brothers, and certainly not our friends.”

Kathryn, Rachel, Martha, David

But she was willing to talk with our good friend Lacy Harwell, a retired minister. Lacy encouraged us to visit his friend Sr. Elaine Prevallet, the retreat director with the Sisters of Loretto community. “I’ve never met another person with Elaine’s gift of discernment.”

So four weeks after the diagnosis, we drove from St. Petersburg to Kentucky. The Loretto “motherhouse” was set on a large farm of about 800 acres, which gave us a lot of room to walk and talk and vent and pray and share with Sr. Elaine. (Down the road was a provider of a different sort of spirit, the Maker’s Mark bourbon distillery, for any who cares to know).

Not far away is the Abbey of Gethsemani, the Trappist monastery that the late Thomas Merton helped make famous through his writings. Martha and I drove there one evening for its ‘Compline’ service and afterwards listened to one of the monks, a Fr. Matthew Kelty. He spoke and read with a Boston Irish brogue, quoting poetry, scripture, and stories, his ruddy cheeks accenting the glint of sadness and surprise in his eyes.

Hearing and watching him, I didn’t know whether to laugh or cry, his homily was deep and poignant and humorous. He is one of the most engaging Christian homilists I’ve heard. He touched Martha as well, so we decided to return the next evening.

The late Fr. Matthew in an earlier day

After Fr. Matthew finished that next evening, he slipped out to his left from the podium and circled behind us. I turned to Martha, but she was gone. She’d jumped up to talk with him as he was exiting. “What was that about?” I asked when she returned.

“I told him about my Alzheimer’s and asked if I could meet with him,” Martha said with a smile in her eyes and on her lips. “He said to come back tomorrow and meet him at the library door.”

So we did. They met for an hour or so, leaving me to walk the abbey grounds. When they emerged from the library, Martha was relaxed and confident, something I hadn’t seen in a long while. We decided to explore the property together before finally driving back to the Sisters of Loretto.  

Sr. Elaine listened to us every day for a couple of hours as we shared our worries and concerns and the deep sense of loss. Midway through our visit, she startled us both, saying as gently as she could, “You might want to explore the difference between willfulness and willingness.” She pointed us to a little book in their library.

Sr. Elaine Prevallet

I didn’t have a clue what she was talking about and neither did Martha. Nor did I after scanning that book, Will and Spirit: A Contemplative Psychology (Gerald G. May). I was editor and publisher of a regional business magazine that I started. And Martha was deep into local politics, having served on the St. Petersburg City Council several years in the 1980s, and having run just the year earlier for an open seat in the Florida Legislature, which she lost by 20 votes.

If being immersed in politics and running an entrepreneurial business aren’t willful, stubborn endeavors, I don’t know what is.  

As we mulled over Sr. Elaine’s comments and insights, and after a restful week’s visit we drove back home, preparing for our first of 16 Thanksgivings as we trekked through this strange and bizarre world they called Alzheimer’s. (These experiences and more can be found in my book A Path Revealed and on my website.)

The Sisters of Loretto community

More than two decades later, and six years after Martha’s death, I’m reflecting on Thanksgiving yet again, and on the responsible, life-loving adults and parents Martha’s children and mine have become, all while in the midst of this strange and bizarre, pandemic-driven election year. As I do, the voices of Sr. Elaine and Fr. Matthew still ring true and clear in my heart:

Fr. Matthew: “Suffering has something to do with salvation. We know that much. To say anything more is dangerous business.”

Sr. Elaine, quoting an ancient Eastern Orthodox verse: “Fold the wings of your mind. Place your mind in your heart. Come into the presence of God.”

Fr. Matthew to Martha after meeting with her: “You came calling on me. You are now one of us. So from now on, you are in my prayers.” Tears welled up in Martha’s eyes.

Sr. Elaine to us both: “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.”

May this Thanksgiving be meaningful and life-giving to you and your family during these weird and strange times. Our family gives thanks for each of you, and yours.

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

PS1 If interested, this two-part video is a homily by Fr. Matthew on the absolute need to forgive—as much or more for my own mental, emotional, and physical well-being as for healthy relationships. I heard and read him enough to tag him the Monk of Forgiveness. We all know that resentment and bitterness can be irrational, completely. And we often try to gloss over such feelings. But while in the thick of Alzheimer’s, if I were going to really care for Martha I had to learn to forgive her; to forgive God; and to forgive myself for all my inadequacies. It was not easy. This video is well worth 30 minutes of your time.

PS2 If you’d like to sign up for my blog, there’s no charge; just click here.  

PS3 Remember, November is National Alzheimer’s Month. One good way to give thanks this holiday is to buy a sheet of Alzheimer’s stamps, which were recently resurrected and will be available until November 2027, or until the stamps are sold out. If it’s not yet available at your local post office, you can always buy some online at the USPS store. The net proceeds go to the National Institutes of Health (NIH) for Alzheimer’s research.

A Hard Thing for Me to Learn as a Caregiver

Probably the hardest thing for me during our family’s 17-year odyssey through Alzheimer’s was this:

To listen to and understand my wife when she was still able to talk and make sense;

And when Martha was still talking but making less sense, to still listen and understand her;

And then in the later stages of this tragic disease, when she was unable to talk at all, to be attentive and understand what Martha was trying to convey to me.  

Equally difficult for me as Martha’s caregiver was to find someone who could listen to me and understand what I was going through. I made this more difficult than necessary, at least initially, because I thought I could handle any issue that arose.

Reflecting back on those times, I’ve invited a good friend who over the past two decades has become something of a listening expert to share her insights with us. Martha and I have known Mary Zahl since college days. If you’re familiar with our family’s Alzheimer’s story, you may remember that Mary and her husband Paul, now a retired Episcopal priest, introduced me to an Anglican priest in Australia who I developed a warm friendship with.

Mary Zahl at one of her listening training sessions

Mary says that it was in the mid-1990s that a book titled Listening (now in its 17th printing) caught her eye. She went through considerable training with its author, a British Anglican priest named Anne Long, and subsequently has offered many workshops of her own on how to listen well.

Carlen: Welcome, Mary. Our conversation today may be a bit different from your regular conversations on how to listen well, for many reading this post are having to deal with dementia’s many volatile symptoms. Knowing this, are there some basic principles or attitudes with listening that might be helpful for a caregiver?
Mary: I never want to underestimate the difficulty of trying to listen to someone suffering from some form of dementia. That said, listening well can be learned with practice, and it has more healing power in itself than anything I know. It’s a skill that can be taught, yet is seldom practiced by anyone.

CM: I think back on the times Martha was saying things that didn’t make sense, and I kept trying to correct her. She grew angrier, and I grew more frustrated.
Mary: Listening well doesn’t require you to change your mind, Carlen, but it does require a willingness to sacrifice, at least temporarily, any expression of ‘what I think is right.’ St. Francis said, “A person had not yet given up everything for God as long as he held on to the moneybag of his own opinions.”

CM: I remember our daughter Rachel, who was still in college, being upset that she felt unable to connect with her mother. And apparently I said, Rachel has told me since, that “You now have to step into Mommie’s world, Rachel.” Is this similar to what you’re saying?
Mary: It sounds like it. They say three-fourths or more of communication is non-verbal. I would want to do two things. First, I would be very prayerful. What’s the feeling I’m getting from Martha? I would ask God what she’s trying to tell me. The second thing is to pick up on her non-verbal signals as best I could. Is she anxious? Is she frustrated or fearful? How do I respond to these signals?

It’s important for a person, especially someone with dementia, to feel comfortable, to feel loved and very safe.

CM: Is it necessary to know someone a long time to become a good listener?
Mary: Not really. Do you remember when you and Martha visited Paul and me in Birmingham and met with our friend Janice?
CM: Sure. (That was three or four years after Martha’s diagnosis in 1997; her ability to speak was slipping rapidly.)
Mary: What I remember is Janice being totally focused on Martha. Martha was quite anxious at the start as we sat in a circle…you, Martha, Janice, her husband, and me. You had just met Janice and Peter. As Janice talked and listened to Martha, it was as though no one else was in the room. Janice’s eyes warmly connected with Martha’s blue eyes. She gave Martha her complete heart and soul. In a short while, I could see tears streaming down Martha’s cheeks.
CM: Yes, Martha was being heard; she was being understood. And from that point on during our visit, Janice might as well have been Martha’s long-time best friend.

CM: I found the practice of meditation of real value, both early on when Martha was still able to talk in an understandable way and later when she couldn’t talk. It helped Martha’s anxiety and mine go way down. Does this fall within the scope of what you call “listening?”
Mary: Yes, in meditation you are learning to let go of your thoughts. That is akin to being a ‘non-reactive listener’. The two practices work hand-in-glove in developing a respect for silence.  But many have difficulty developing a comfort level with silence. It takes practice. If your loved one is talking with you and your silence becomes awkward for her, you might break the silence and say, “Would you like to say more about that?”

But don’t ask informational questions. They have nothing to do with what your loved one is trying to say and will cause the conversation to stay at the surface when your goal is to enable emotional depth so that healing can take place.

Mary with ‘Listening’ author Anne Long

CM: What about me as the caregiver? I had no one to listen to me at first; in fact, it didn’t occur to me that I needed anyone. Eventually I was fortunate that a series of mentors seemed to arise at just the right time. If I wanted to, how could I have found someone to listen to my ongoing feelings and concerns? Looking back, I may have known a couple of persons who were capable of listening as you describe it.
Mary: The person you seek out doesn’t have to be a professional counselor or priest or minister. A friend will do. They probably would be honored that you asked. As for guidelines for listening, I’ve published some in the back of my husband Paul’s latest book. (Peace in the Last Third of Life: A Handbook of Hope for Boomers).

(Please note: I’ll list these at the end of our conversation.)

CM: What about a caregiver support group? I couldn’t find one back in 1997, but there seems to be plenty around today.
Mary: That’s definitely a possibility. I would suggest, however, that after the group members share among themselves as a whole that they pair off for one-on-one listening sessions. Find someone you’re comfortable with and they with you. Then take turns listening to each other. Set a time limit for each one listening, for as little as five minutes and as much as fifteen. And use guidelines similar to what I previously mentioned, such as don’t tell your own story in response to theirs. You may think you are expressing empathy, but you are simply redirecting the conversation back to yourself and, in effect, silencing your partner. And don’t offer advice, which can make it all about you, the listener.

If you are comfortable with each other, continue to pair off with them at each of your support sessions. You may even want to listen to each other when outside the group. This kind of listening is just so powerful.

CM: How can I know if I’m listening well with my loved one? And if I’m being well listened to when I’m sharing with another?
Mary: In my training sessions I often ask the participants to say the word that comes to mind when I ask: “What did it feel like when you were listened to?” Here are some of the words I typically hear in response: Loved, valued, important, heard, relieved, accepted, understood, energized.

I also ask them to picture a time when they were not listened to. What did that feel like? These are some of those words in response: Invisible, empty, angry, deflated, depressed, helpless, unimportant, rejected, dismissed, unloved.

CM: You’ve got a lot of information here.
Mary: Initially it may not sound like it, but listening well is fairly simple. It does require a few things, such as the desire to listen and to be listened to. Also, practice is important, like learning any other skillset.

You’ll find that listening well is a threefold process: Listening to your loved one or designated partner, listening to yourself, and listening to God, all at the same time. The more you’re able to sacrifice your need to react, the more you begin to see lifelong patterns within yourself. It’s amazing to become aware of your emotional reactions and patterns.

CM: Anything else you’d like to share before we close?
Mary: Just a few practical pointers. First off, find someone you trust to keep your confidence, someone who’s willing to dedicate 30 minutes of time to listening and being listened to without comment or questions. This is not the same as a conversation. Also, find a time and place where neither of you will be distracted. Remember to turn off your phone. Decide who will be the first speaker, touching on something that has disturbed you recently, or something about which you need to sort through your feelings.

When the speaker has finished, ask the following questions in turn: 1) Of all that you have been saying, what do you think is most important? 2) Is there anything you would like to do about what you have said? After each reply, the listener repeats back what the speaker has said, but without interpretation. Then when the first speaker has used her allotted time and answered these questions, the roles are reversed.      

CM: I find this conversation most helpful, Mary. Thank you. I hope many of our readers do as well.
Mary: I’ve enjoyed this, Carlen. Listening to someone with dementia is on one end of the continuum of listening. It can be really hard, as you and many of your readers know. But your mere silence and presence with your loved one can be truly healing. Listening well must come from the heart, and not just the mind. It involves sacrificing the need to speak and to be heard yourself.

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

Mary Zahl’s Guidelines for Listening Well

Says Mary: “There are a few principles in good listening, which, when followed, almost always enable graceful healing to take place.” Adapt these guidelines as you need, whether you are listening to your loved one with dementia, or to another caregiver in a support group, or a friend is listening to you:

• Look the speaker in the eye warmly and while giving them your full attention.

• No interrupting, ever. Most people listen with the intent to reply, which is not really listening at all.

• No giving of advice, in spite of how much insight you think you have. By not giving advice, you show that you trust the person to give herself advice, which she is infinitely more likely to follow than your wisest, most loving intention. Your advice will almost always set up a rebellious reaction, and it often falls into the category of your ‘personal need to help’, when your help is not being solicited.

• Do not tell your own story in response to theirs. You may think you are expressing empathy, but you are simply redirecting the conversation back to yourself and, in effect, silencing the speaker.

• No asking of informational questions. They have nothing to do with what the speaker is trying to say and will cause the conversation to stay at the surface when your goal is to enable emotional depth so that healing can take place.

• Do not minimize or spiritualize. This communicates, “I do not take your pain seriously.” Or, more likely, the speaker’s pain is making you, the listener, anxious. Or, perhaps you hear an inner voice to ‘witness,’ telling you to quote scripture. These responses are about the listener, not the speaker.

• Develop a comfort level with silence. Only if the silence becomes awkward for the speaker, you might say, “Would you like to say more about that?”

• What the speaker says is confidential, always.

• Finally, learn to listen to what your loved one is not saying.

Thanks to each of you for listening to Mary share her thoughts on listening well.

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

PS1 Remember, November is National Alzheimer’s Month. One good way to honor this is to buy a sheet of Alzheimer’s stamps, which were recently resurrected and will be available until November 2027, or until the stamps are sold out. If it’s not yet available at your local post office, you can always buy some online at the USPS store.

PS2 If you’d like to sign up for my blog, there’s no charge; just click here.  

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

The Countdown Begins: Day 5-4-3-2-1

In just five days, on October 5, 2020, the Alzheimer’s stamp will be available for sale—again!

But it was never a given that this day would occur. In fact, the certainty was that this stamp’s inventory would be destroyed and not sold again after its solid two-year run. That’s what the federal regulations required for a stamp like this Alzheimer’s one. From November 30, 2017 through the end of November 2019, 8.2 million stamps were sold by the U.S. Postal Service (USPS), raising more than $1.06 million for Alzheimer’s research.

Now, after a 10-month hiatus, this Alzheimer’s “semipostal” stamp has not been destroyed and is once again alive. (A semipostal stamp is a type of first-class stamp sold to raise awareness and funds for a good cause).

The story behind how this happened has too many bureaucratic twists-and-turns for me to tell in a clear, explainable way. I get lost in the weeds just reading about it.

Let’s just say that the Alzheimer’s stamp still lives because of the efforts of two of the most tenacious persons I’ve met who worked with key congressional and postal leaders and with fellow advocates.

We are here, finally, thanks in large part to Kathy Siggins and Lynda Everman. You may remember them from my blog post two years ago, After 27 Years, Their Steadfast Dream for an Alzheimer’s Stamp Turns True. To be reminded of their tenacity and single-mindedness is well worth the read.     

This time, the Alzheimer’s stamp will “remain on sale until the supply of stamps is exhausted OR the 10-year discretionary semipostal program concludes on November 30, 2027,” according to a USPS press release. Originally, 500 million stamps were printed, so there’s an ample supply to tap.

“Let’s hope we run out of stamps before November 2027,” says Lynda. Both Kathy and Lynda were caregivers for their late husbands living with Alzheimer’s, as Lynda also was for her father.   

The Alzheimer’s stamp still costs $0.65 as long as the first-class stamp rate remains at $0.55. If as of October 5 you can’t find the stamps at your local post office you can order them online. Go to the USPS Postal Store Stamps category and in the search box type in “Alzheimer’s.” That should get you to the right spot; by then there may be a direct link as well, which I obviously don’t have at the time of this writing.

By law, 100 percent of the net amount raised is transferred to the National Institutes of Health (NIH) to support research and medical discoveries in the fight against Alzheimer’s disease.

Lynda Everman (left) and Kathy Siggins

Thank you, Kathy and Lynda, you’ve done your jobs and much more. So now it’s up to us and our networks of family and friends to buy and promote these stamps.

The stakes are high. The number of persons living with Alzheimer’s today in the U.S. is estimated at 5.8 million, according to the Alzheimer’s Association. Unless there’s some intervention, or a series of them, that number is expected to grow to an estimated 7.1 million by 2025 and to 13.8 million by 2050.

When my wife was diagnosed with early onset Alzheimer’s, those living with the disease in the U.S. were estimated at 2.3 million persons, according to an NIH report. That was in 1997 when Martha had just turned 50.

But as you and I know, these cold, hard figures do not begin to convey the pain, anguish, and frustration that arise from caring for someone with Alzheimer’s. For every person living with the disease, an estimated 2.75 family members are directly affected, according to the Alzheimer’s Association report. Translation: An estimated 21.8 million persons in this country are either living with this disease or voluntarily caring for their loved ones. That many people would form the third largest state in the country, behind California and Texas and ahead of Florida and New York.    

In the case of our family, our three children were still in high school and college when Martha was diagnosed, and she lived another 17 years, the first ten at home and the final seven in a nursing home.

Another way you can help
Let me also remind you of another simple way to financially support Alzheimer’s research, and that’s through the Amazon Smile program. For any purchase I make on Amazon Smile, I’ve requested that a portion of that sale goes to the Alzheimer’s Association. A recent notice from Amazon indicated that its most recent quarterly donation to the Alzheimer’s Association was $121,952.72. (No, that wasn’t just from my purchases.) To date, $771,410.73 has been donated. Please click this link to Amazon Smile to sign up if interested. Amazon Smile does not add to your cost; it takes a cut out of the purchase price.     

In closing, I encourage you to buy as many stamps as you can afford. Then forward this post to all your family and friends. Encourage them to buy as many stamps as they can afford. Then ask them to forward it to their entire network of family and friends. And then on and on and on. Kathy and Lynda have done their part. Friends, let’s do our part! 

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

PS1 If you’d like to sign up for my blog, there’s no charge; just click here.  

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. I share our family’s 17-year odyssey of living with this disease. 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.

You're Smart to Be Alert to This Hidden Grief

Those of us caring for a loved one who’s ill with no known cure; for a loved one whose behavior can change by the minute; for a loved one with no end in sight … we may very well be carrying a grief that’s deep and hidden, a grief that we’re unaware of. All we know is that we get upset too easily, and we too often don’t know what to do about it.

In many ways, that describes me for the 17 years that I cared for my wife Martha after her diagnosis with early onset Alzheimer’s; she’d just turned 50.

Surely, all of us know about the grief that comes when we lose someone we love. And many of us understand the difference between “good grieving” and “bad grieving.”

But if you’re like me, you may not be aware of this oft-hidden grief that’s called “anticipatory grief.” I wasn’t aware until after Martha’s death six years ago.   

Carol Bradley Bursack recently wrote about anticipatory grief, and the risks of misreading its symptoms while caring for a loved one with dementia or some other long-standing illness. “Research has shown that those experiencing caregiver strain have a 63 percent higher mortality risk than their non-caregiving counterparts.”

Carol says of her own caregiver days: “I didn’t have the time or energy to think of myself very often...When we are in the throes of caregiving, we often stuff our feelings deep down and focus on getting through each day…I did myself a disservice by failing to recognize that I had the needs of someone who was in mourning…I should have cut myself some slack.”

I’ve been following Carol for a while, and I profiled her in 2017. She writes one of the most practical and insightful blogs—Minding Our Elders—for addressing issues of dementia, aging, and caregiving. She shares her insights about anticipatory grief on the Aging Care website, and she’s kind enough to let me share them here. (Her comments have been edited for space considerations.)

Carol writes…
“Nearly everyone involved in caring for an ill or aging loved one is experiencing some degree of grief. However, we don’t usually identify the complex emotions we’re experiencing as such. When you have a parent or spouse who used to be strong and capable but begins to ask for a little assistance, it’s no big deal, right? You’re happy to help.

“But deep down, there’s a knot in our hearts. We’re grieving various kinds of loss, including the loss of function that comes with advancing age or a chronic medical condition. Generally, these changes are subtle and the grief surrounding them is sneaky.

My Experience with Grieving Before Death
“I remember watching my parents age in the normal fashion. I’d occasionally look at them and be startled by the realization that they were getting older, but that was all I acknowledged. I never consciously dwelled on the fact that they would continue to decline and eventually I would lose them. I didn’t want to. These things did, however, linger in the back of my mind.

“Then one day my dad underwent brain surgery to correct an old injury he sustained in World War II. It was made clear to us that without this operation, he would eventually suffer from severe confusion. Unfortunately, though, the surgery was unsuccessful. Instead of preventing this fate, he came out of the operating room with full-blown dementia. Our family was suddenly experiencing one of those tragic things that only ever happens to “other people.”

“There was no time to fully contemplate the far-reaching implications of Dad’s abrupt change in health. Hard decisions had to be made and there was so much to be done that we couldn’t have anticipated. Where should he live now? What kind of immediate care does he need, and how will his needs change down the road? What is best for Dad? What is best for Mom?

“I became the primary caregiver, immersing myself in the task of making Dad’s existence worthwhile. Whatever he imagined was happening, I did my best to make it so. When he was waiting for his medical degree to arrive in the mail, I made sure one did. I became his office manager and his music director. Whatever he needed, I did everything humanly possible to provide it or become it.

“At that time, I had several other elders to care for as well as a son with chronic health problems. I didn’t have the time or energy to think of myself very often. Now, I look back and see that I didn’t do myself any favors. If I had a good friend going through what I experienced, I would offer them all the help I could…I would press them to do some things to take care of themselves…But back then, I did not ever think about these things for myself. When we are in the throes of caregiving, we often stuff our feelings deep down and focus on getting through each day.

Carol’s book cover with father

“It wasn’t until Dad died about a decade later that I recognized what I had been going through…Gradually, I realized that I had been grieving that whole decade. I did myself a disservice by failing to recognize that I had the needs of someone who was in mourning. Like most caregivers, I should have cut myself some slack. I was not as gentle with myself as I would have been with a grieving friend or family member.

Recognizing Anticipatory Grief
“I now speak to groups of family caregivers and often remind them that they are likely experiencing anticipatory grief, whether they are caring for loved ones with a terminal illness like cancer, or a chronic, progressive condition like lung disease, Parkinson’s disease, or dementia…We do all we can to support them and help maintain their quality of life, but we can’t prevent the inevitable.

“Anticipatory grief is different from conventional grief because it is defined by the anticipation of a loved one’s death. With grief before death, we contemplate many of the same questions that usually arise just after a person has passed away: What will we do without them? How will my life change? How will we keep on living? The difference is that we have not experienced the actual loss. We are not yet capable of going through the difficult emotions that accompany death, healing, and rebuilding our life without our care receiver.

“We are mourning while our loved ones are still here. We are upset at the eventuality of their death, yet we are still responsible for their care and privy to every minor change in their condition. Some caregivers are better at coping with the constant reminders that their care recipients are declining. However, a tinge of caregiver guilt is often present for many. Grieving is difficult enough but mourning while someone is still alive just feels … wrong.

“Anticipatory grief doesn’t get the coverage that it warrants. Family caregivers are often confused or embarrassed by these ill-timed feelings, but if they aren’t addressed, they can wreak havoc on our physical and mental health. They creep up on us as small losses mount over time. For care recipients, these include the loss of independence and functional abilities. For us, it’s the loss of time for ourselves, time for our jobs, and even time for our children. It’s the loss of the relationships we used to have with the people we’re caring for.

“This last aspect of grief is especially true for dementia caregivers. Those caring for persons with Alzheimer’s disease and other forms of dementia bear witness to a prolonged mental and physical decline (and cycle of grief) that can last for more than a decade. In many cases, an elder’s independence and functional abilities disappear along with their memories and personality, leaving someone behind who is almost unrecognizable.

Seeking Help with Anticipatory Grief
“Anticipatory grief is an insidious feeling that is often accompanied by caregiver depression and even caregiver burnout. While this kind of grief is far less studied than conventional grief, research suggests that validation of grief feelings, increased coping and self-care, anticipation of future losses, and reframing roles can be useful therapeutic interventions. Working with a mental health professional and attending caregiver support groups can help immensely with grief work, anxiety, depression, and burnout.

“The well of grief is deep. We need to be self-aware and realistic about our emotions so they do not drown us before we realize how potent they are. As much as we strive to be compassionate and attentive to others, we must be reminded that we caregivers are suffering, too. The stress and anxiety that accompany prolonged grief can be deadly. Research has shown that those experiencing caregiver strain have a 63 percent higher mortality risk than their non-caregiving counterparts.

“We need to be a friend to ourselves and get help before we become a statistic. Not only will we gain the tools we need to continue on in our role without jeopardizing our own wellbeing, but we will also reduce the likelihood that we will experience complicated grief after our loved ones pass on.”

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

Thank you, Carol, for sharing your hard-earned knowledge. Let me quickly add two bits from my experience, which helped me defuse the stress I felt and, yes, the grief…

• It’s important to find someone early on who you are comfortable talking and sharing with, someone to bounce ideas off—a friend, a counselor, a spiritual mentor, a support group, a family member. When Martha was diagnosed in 1997, I was either too shy, too proud, or too busy to seek help. Fortunately, my significant contacts over those 17 years somehow seemed to arise on their own. I did try to find a support group but found none. An early gift came from our sister-in-law KK when she encouraged Martha to join her in a water-color painting class. Martha’s self-confidence, which had evaporated, suddenly re-emerged. You can see some of her paintings here.  

• The best gift I received came from our two older children, David and Rachel, after they graduated from college four or five years following Martha’s diagnosis. They gave me a weekend a month off, which I usually spent at a nearby monastery to vent, sleep, pray, argue with God, walk, meditate, read, share meals with the brothers while laughing at their jokes, or just sit quietly outside among the orange trees.

• When Martha’s independence faded, I was most fortunate to be able to continue publishing our regional magazine, which was profitable enough that we could contract two daytime caregivers; they quickly became Martha’s good friends.

• Whatever your resources—family, friends, financial, support groups, church, clubs—draw them into your radically altered life as soon as possible. Don’t be shy. Don’t be too busy. And don’t be proud.

• Many needs arise out of a longstanding illness, as with our 17-year odyssey. A care partner’s greatest need, experience tells me, is to know and feel they are loved. Why? Because I so often felt like a failure in trying to cope with Alzheimer’s volatile symptoms. The one living with dementia has the same need. Loved by family and friends, loved by ourselves, loved by our partners regardless of the frustrations, and loved by that ever-present, intimate being many of us call God. This is much easier for me to write today than it was for me to experience then. But even today, it’s vital that I practice knowing that I am surrounded and infused with Love. My life depends on it. Do you get what I mean?

• Finally, I remember these words from a friend early in our odyssey: “As you go through this, Carlen, remember to be gentle with yourself. Be gentle.”

There’s little that I will tell you to do, or can tell you. I’m better at sharing stories and ideas. But one thing I will tell you to do is this: Be gentle with yourself.

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

PS1 You may remember our conversation last Christmas with Geri and Jim Taylor in a post titled Her Strategies for Living Day to Day with Alzheimer’s. Ever since Geri’s diagnosis in 2012, the couple has strongly advocated for those with dementia and other mental disabilities. The Alliance for Aging Research recently honored them and their work with its “2020 Perennial Hero Award”. Their interview with the Alliance can be found here. Congratulations, Geri and Jim. Well deserved.

PS2 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.  

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. 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.

Let Me Breathe!

On rare occasions you encounter a story, a poem, or a work of art that draws you into depths that you’d forgotten or not seen before. As often the case, that work takes you to places that has everything to do with the artist’s idea…and at the same time seemingly nothing to do with it.  

That’s my reaction to a prayer recently shared by the Rev. Dr. Karl Travis, a Texan through and through. It’s titled A Prayer for This Moment, which I’ll share shortly.

First, though, to understand the depth from which this prayer arises, you need to know a bit about Dr. Travis. He was at the height of his career in 2012, in his late 40s, when he began to experience mysterious health issues. For a dozen years, Dr. Travis was senior pastor at the 2,000-member First Presbyterian Church in Fort Worth, TX. Somehow he kept life, limb, and sense of humor together until pastoring became impossible, and he resigned in December 2018.

Much earlier, he graduated magna cum laude from Trinity University in San Antonio; studied at San Francisco Theological Seminary; was awarded an Honours B.D. at the University of Edinburgh in Scotland; and later received a doctorate of Humane Letters from Austin College, where he now serves as a trustee. He was a sought-after lecturer and guest preacher. 

Dr. Travis ultimately was diagnosed with an unpronounceable progressive pulmonary disorder and severe blood-clotting disease. His family has called in hospice. He describes these troubles this way in a recent blog post titled Meanwhile’s Far from Nothing:

“Remember the café scene in Groundhog Day when Bill Murray says, ‘I wasn’t just blown up yesterday. I have been stabbed, shot, poisoned, frozen, hung, electrocuted, and burned. Every morning I wake up without a scratch on me. Not a dent in the fender.’ He concludes: ‘I am immortal.’

“I sort of understand how he feels! I have survived three pulmonary embolisms, nine deep vein thromboses, eight thrombectomies, 17 days in the catheter lab, and five general surgeries. A third of my left foot has been amputated. Throw in two open heart surgeries and three internal bleeds and you can see why hospice seemed a natural choice. After all, ‘I wasn’t just blown up yesterday!’”

“Entering hospice care meant disconnecting my fancy drugs. Then, stunningly, I dropped 30 pounds in three weeks, stopped taking morphine altogether, and got out of bed. I haven’t felt this good in two years. I should have gone on hospice months ago!     

“I’m almost embarrassed to talk to friends anymore. Just how many times must we tell one another goodbye? People have said such kind and gracious things to me, humbling things, remarkable and heartfelt things. Now, after this hospice U-turn, when I talk with them the next time, I will almost overhear their inner dialogue: ‘Well now, this is uncomfortable. Shouldn’t he be dead by now?’”

“I wonder how Lazarus handled the social awkwardness,” Dr. Travis muses.

 With his health and breathing issues as a backdrop, and in light of the recent killing in Minneapolis of George Floyd by suffocation and the precipitation of worldwide protests, this is Dr. Travis’s prayer—spiritual, prophetic, unsentimental…

A PRAYER FOR THIS MOMENT

The Spirit cries out…   
LET ME BREATHE!

In your streets and into your hearts,
I yearn to blow free.
But you are a stiff-necked people,
kneeling on my neck.

Where injustice stands over the downtrodden,  
let me breathe.

When racism blinds you to the experience of others,   
let me breathe.

As bigotry finds voice in the high places,   
let me breathe.

When avoidance and convenience sanction unanswered wrongs,   
let me breathe.

Each time privilege cloaks unseemly truth,   
let me breathe.

Every time inhumanity poses as righteousness,   
let me breathe.

Let me breathe   
from “Stone Mountain of Georgia,”  
from “Lookout Mountain of Tennessee,”   
from “every hill” and “molehill” and   
from every “mountainside.” 

Let me breathe in YOU, for I am the Lord God,
and I am choking, panting, gasping to be heard,
in all languages, in all places, for all people.

 ~~~~~~~~~~~~~

I’ve lost count the number of times I’ve read and repeated Dr. Travis’s prayer, turning it over in my heart and mind. It’s best read aloud, slowly.

Yes, Dr. Travis’s prayer resounds clearly upon the social fabric of my life and upbringing. I grew up in a small, segregated town in Tennessee. My family was a church-going family, my father a successful business owner. As with many of my friends, I was taught to be polite and deferential to others, especially to those of lesser financial status or of a different skin color. You might call that patronizing. In 1968, I was at Georgia Tech when Martin Luther King Jr. was assassinated and his memorial service subsequently held in Atlanta, where the streets were eerily quiet and empty while I hid in my dorm room.

Yet Dr. Travis’s prayer also echoes deep within other chambers of my heart, mind, and soul, and I’m having difficulty explaining how and why.

The words “crisis,” “fear,” and “oppression” seem to frame a common theme. Whether the issue is racial in nature, or economic, or the loss of loved ones, or unresolvable health issues, oppression is still oppression. And paralyzing fear is still fear.

The spirit of Dr. Travis’s prayer recalls a number of moments during our family’s 17-year odyssey with Alzheimer’s, after my vital 50-year-old wife was diagnosed with this disease.

Here are three specific incidents…

When we got home after hearing the diagnosis (this was in 1997), Martha’s first words to me were, “I do not want to tell anyone! I don’t want to tell our children; I don’t want to tell my parents and brothers; and I certainly don’t want to tell our friends.” That diagnosis hadn’t turned our world upside down; it imploded before us.

As I reflect back, I hear these whispered words, Let me breathe, Carlen, you can’t go this alone.

Another moment, about five years after the diagnosis: I vividly remember that day hearing the “thud” upstairs while I was preparing breakfast. Leaping up the steps I found Martha curled up into a full seizure. I froze. Then I called 911. Rushed to ER, she remained a few days in the hospital for observation, doped up because the nurses knew no other way to deal with Martha’s condition. It was terrible. Even after her doctor placed Martha on an anti-seizure med, she had a second one several months later. This time I decided not to call 911. Instead, I lifted her onto our bed, sitting beside her while quietly repeating the meditative word or “mantra” we’d been taught a few years earlier. As it turned out, Martha rested most of that day and woke up the next morning filled with energy.  

Let me breathe, Carlen.

A third scene: A decade into our odyssey Martha moved into the Menorah Manor nursing home. I often found her hunched over in a fetal position, her right arm curled tightly behind her neck, anxious about what I didn’t know. I would sit beside Martha and slip my hand into hers while quietly repeating our mantra. It usually didn’t take long before she relaxed her body, sometimes falling asleep, other times looking at me or out the window. Frequently I felt a presence of peace settle into Martha’s room, the quality of which I have not experienced since.  

Let me breathe, this Spirit whispers, let me breathe. Let me breathe through your stubbornness. Let me breathe through your obsessions. Let me breathe through your willful compulsions. Let me breathe through your forgotten prejudices and hurts. Let me heal you, Carlen, let me make you whole.     

Do you also care for a loved one with dementia or another disabling disease? Have you lost someone close--a beloved child, a parent, a spouse? Have you lost your job or your savings? Are you overwhelmed by the pandemic? Do you have an incurable disease? Are you the victim of racial oppression, blatant or otherwise? Are we oppressors unaware?

Fear comes in many forms, and it can be oppressive and devastating. If persistent and harsh enough, fear seeks to smother the life out of you.

Let me breathe, Carlen, let me make these fractured memories whole.   

There’s something about repeating these words, almost like a mantra, when faced with some oppressive feeling or situation that causes me to relax and to open lost spaces within. Don’t ask me how or why. It just does—not always, but often enough.

Thank you, Rev. Dr. Karl Travis, for sharing your prayer. May you continue to realize this life-giving breath within you as you cope with all that’s raining down on you. Yours is a prayer that flows deep and wide into issues of social justice. Yet it also is a prayer that touches the hidden depths of a person’s emotional injury and pained memories. At least it does mine.  

Let me breathe!

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

PS1 Dr. Travis permitted me to share his prayer, and you in turn may share this post with your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.  

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. 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 three 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.

Emerging from a Hard Season of Dementia, Pandemic, and Death

He lost an older brother recently, along with a close friend, two mentor-colleagues, and his wife of 58 years, who for the past decade lived with an especially disturbing form of dementia.

“Treasured voices have been silenced and the places they occupied have become a dark void,” writes Rev. Dr. Kenneth Carder in a recent blog post. “Added to this void is the isolation of a global pandemic. The wait for release from imposed aloneness … We don't know when it will end. When it does end, life will be different; but the shape of that difference remains unknown.”

He’s endured a long season of “silent and dark places,” says this Professor Emeritus at Duke Divinity School and retired bishop of the United Methodist Church. After hearing this, I wondered how he’s come through it all. I wondered how he would describe himself today versus, say, fifteen years ago. How would he describe himself now as a pastor? As a professor? As a husband and father? As a friend?

But I get ahead of myself.

Ken and his wife Linda were in their late sixties in 2009 when she was diagnosed with ‘frontotemporal’ dementia, a condition that can elicit a variety of disturbing behaviors. The diagnosis caused him to resign his full professorship at Duke to become a full-time caregiver, and to move from Durham to Columbia, SC, to be near their daughters.

Linda and Ken at their daughter’s shop

“Linda’s behaviors and personality changed ... Frustration, anger, compulsiveness, irritation, restlessness, combativeness, and inner turmoil increased as time passed,” Ken writes in a recently published book. (More on his book later.) “Grief became a relentless companion as losses multiplied … Roles changed. Our daughters became mothers to their mother. I often am more of a parent than a spouse.”

Such abrupt changes surely ring familiar to anyone having to care for a loved one with some form of dementia. (They echo deep in my memory. My spirited wife Martha was diagnosed in 1997 with early onset Alzheimer’s. She’d just turned 50, I was 52, and our three children were still in high school and college.)      

Ken and his daughters Sheri (now 53) and Sandra (50) started seeing changes in Linda’s behavior a couple of years before her diagnosis. “My daughters noticed before me.” Linda had always been an introvert, he says, “but it was becoming more pronounced. And she was becoming less meticulous with our books and finances; there were more errors.”

Before joining Duke’s seminary staff in 2004, Ken served as a Methodist bishop for twelve years in the Nashville area and in Mississippi. Prior to that he’d earned a Doctor of Divinity from Vanderbilt University’s Divinity School and served three decades or so in several churches.

Incongruously, this highly educated minister, bishop, and professor was his family’s first-generation high school graduate. Growing up in Appalachia outside Johnson City, TN, Ken’s parents did not get past the seventh grade, and his older siblings the ninth grade. “We were the poorest people in the neighborhood.” Feeling marginalized, a young Ken “went through high school with none of my classmates knowing where I lived. I felt a disconnect between my background of poverty and my accomplishments in school.”

Ultimately, though, he came to understand that his background was a strength rather than an embarrassment. “Mom would often apologize that we had to grow up this way, but I let her know that I gained traits and insights I wouldn’t have otherwise. I have a strong work ethic because of my father, who worked harder than anyone I’ve met. And my grandfather, although he couldn’t read or write, was the smartest person I’ve known, certainly the wisest.”

“I grew up with a sense of compassion for the little guy, a sense of solidarity with people on the margins.” As a church pastor, for example, he developed a prison ministry.

Yet it was only after decades in the ministry that he realized “no one is more marginalized than persons with cognitive impairment issues. That’s what caring for Linda taught me.”

Upon hearing her diagnosis, Linda’s first reaction was: “I don’t want to tell anyone!”  But she soon agreed to tell their daughters, Ken says, because they were aware of their mother’s appointment. He also felt the need to share with a confidant but was concerned “that I may be betraying Linda.” 

(Interestingly, Linda’s reaction was also my wife’s, as I suspect it’s that of many others who hear such discouraging news.)

“Linda began to withdraw as her confidence eroded; she was afraid to interact with others.” Over time, Linda became “paranoid,” according to Ken. “She saw me as out to hurt her.” This wore on him as he turned more irritable and lost weight. “My daughters became concerned that they might lose me, too, so they urged me to move their mother into a memory-care facility.”

Which he did about five years after her diagnosis. But that only lasted 18 months. “Those months in memory-care were the hardest of all on Linda. And on me. I visited Linda several times a day, yet she was never comfortable and lost a lot of weight. It became so difficult that she was approved for hospice care, given no more than 12 months to live.” Ken subsequently brought her back home for round-the-clock professional care.

Mother’s Day 2014 with daughters Sheri (to Ken’s right) and Sandra (to Linda’s left) and their families

“Linda’s last three years were much better with this excellent home care, as was I. We were most fortunate that I could afford this kind of care; I know a lot of people cannot.” Linda died October 3, 2019.

Ken and Linda have been “witnesses to us from the wilderness,” states the foreword to Ken’s book, which is titled Ministry with the Forgotten: Dementia through a Spiritual Lens. In that foreword, Dr. Warren Kinghorn of the Duke University Medical Center frames the stigma and other issues surrounding dementia this way:   

“Modern culture and much of modern Christianity lead us to think that our personhood is constituted by our ability to reason, to act, and to produce. But from the wilderness, we learn that beyond anything we can think, do, or produce, we are known and loved by God. We are held in God’s memory even when our own fails us.”

“Modern culture and much of modern Christianity lead us to think that dependence and vulnerability are risks to be avoided at all costs. But from the wilderness, we learn that dependence and vulnerability are the core of what it means to be human.”

“(This book) is a testimony from the wilderness … about what it means for love to endure, when all else fails.”

It is out of this wilderness that Ken seeks to describe his transformation and that of his family. He does so through his blog Shifting Margins, his book, classes, seminars, and interviews such as this one. “Being an exile in the wilderness speaks to the unknowns and uncertainties of what lies ahead.  Also to liberation. But with dementia, you’re not sure what the ‘promised land’ looks like. What do you pray for? My constant prayer was for peace for Linda and for me. Her ultimate peace was death.”

Carlen: This wilderness that you describe, Ken, seems to echo with much of what we’ve all been through the past couple of months with this global pandemic. The shock of it, the isolation, the loneliness, the anxiety. It certainly resonates with our family’s 17-year odyssey. What can those of us living through this pandemic learn from your decade’s experience of living with dementia?
Ken: A few thoughts come to mind. One of the first things I began to develop was a sense of solitude out of the loneliness I felt. In doing so, I became friendlier with myself. I also tried to nurture and deepen my relationships, particularly with our daughters and their families as well as with friends. There is truth and beauty in the wilderness in which we find ourselves...I needed to be attentive. It’s in these we often find God.

Finally, I continue to learn to live in my present reality, to live with a sense of hope rather than mere optimism. When we come out of this, we will be different. How, we can’t predict. As a way to sum up: When in doubt, love.

Me: Back to the reality of your life a decade ago, you say that Linda withdrew and went into denial after her diagnosis. What was your reaction?
Ken: I had a deep sense of sadness. And I feared for Linda and our future. But I also felt some relief because I understood better what we were dealing with. And this strange sense of challenge arose quickly: ‘How do I approach this in a responsible way? How do I live out my faith?’

Me: Your faith obviously led you into your career, or calling. How did you live out your beliefs through this decade of dementia and through the “silent and dark places” you describe?
Ken: I always preached acceptance of others. Yet now I feel I can practice it. Even accepting more difficult people; there’s always a back story to their difficulty. I preached grace, but I’m experiencing it more now. I’ve slowed down considerably, and not just because I’m older. I’m more comfortable with ‘being’ rather than ‘doing’. No longer do I feel as much a need to do for my family and friends and acquaintances; I now prefer to be with them.

My primary vocation the past decade was that of providing care for Linda. That care consisted of meeting basic needs with kindness, gentleness, and sensitivity to her dignity. Being present with her—assuring her that she is valued and loved—was at the heart of my daily activity.  

Finally, I’ve learned that I can control very little. Still learning, in fact. 

Me: Ken, why do you say that no one is more marginalized than those suffering with cognitive impairment?
Ken: I haven’t always understood that. As a pastor, I had dealt with congregants and friends living with some form of dementia, but they were not at the center of my pastoral care. I didn’t really know how to relate to them. As many pastors still don’t today.  

The past four years I’ve volunteered as a pastor at the community where I live (until the recent imposition of visiting restrictions), spending time with those in the memory-care facility. Just being present with many. And the staff tells me that while maybe half the families were visiting their loved ones, very few pastors ever visited their members residing there. Very few.

Me: So if someone like a pastor can’t even recognize their needs, how can you expect society in general to?
Ken: Yes. There seems to be a widespread assumption that people with dementia, especially those in an advanced stage, are void of spiritual needs, longings, or wishes. What are the spiritual needs of people with dementia? They are the same needs we all share. The need to give and receive love remains. Dignity remains a lifelong need of human beings. Every person, regardless of physical or mental capacities, longs for worth and dignity, for a sense of purpose and meaning.

Me: But what about those in an advanced stage? What possible sense of purpose can they experience if they are unconscious of such a need?
Ken: My experience with Linda and with others recently is that the drive for meaning is deeply embedded and transcends cognitive awareness. Fundamentally our purpose, whether we are well or incapacitated, is “to be” more than “to do”. As ones bearing the image of God, we are to be in relationship with God, with others, and with His creation.

Many don’t seem to understand that the presence of someone, a certain moment with them, the emotional experience of a visit by a friend, or pastor, or family member lingers long past that visit, whether a conversation occurred or not. I certainly didn’t understand this before.    

Me: Are these some of the reasons why you chose to teach a pastoral care class at a nearby seminary?
Ken: Yes. And it’s out of this class’s conversations and curriculum, and my experience, that my book’s content arose.

My publisher wanted my book to be academic and for pastors and seminary students, which it is. But I’ve written it in a style for a broader audience—for those caring for loved ones with dementia who seek a spiritual direction through a crisis that can be so overwhelming.

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

As a Methodist minister, Ken obviously wrote his book with Christian concepts and vocabulary. But after reading it, I’m impressed that persons of other religions or of no religion can translate his insights fairly easily into their own traditions or way of thinking.  This is a book that can help almost anyone negotiate their treacherous path through dementia, whatever its form and symptoms.

Its pivotal chapter for me is titled “Dementia and the Meaning of Personhood.” In it, Ken relates a story that most any family living through dementia can identify with:

“‘She’s not the person she used to be,’ remarked the nurse practitioner after announcing that Linda had scored zero on (a state mental exam). I got the distinct impression that she didn’t consider Linda a person at all. She never looked at (Linda) or acknowledged that she was sitting across the table. A zero … apparently rendered Linda a nonperson.”  

Such stigma was deep, strong, and widespread when my wife was diagnosed back in the “dark ages” of 1997. It still is today.

~~~~~~~~~~~

On occasion, I give a book away. This is one of those occasions. In fact, Ken has graciously agreed to give a signed copy of Ministry with the Forgotten. If you’d like to put your name into the hat for this, here’s how:

• Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, May 14, and Saturday, May 16, by 12:00 Midnight EDT. Indicate that you would like to be included in the drawing and put in the subject line: BOOK GIVEAWAY.

• Someone will be selected at random from those entering. I’ll send you a congratulatory email on Monday, May 18. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random.

• For more details, click Book Giveaway.

~~~~~~~~~~~

One last question, Ken, before we let you go. Simply as possible, how would you describe yourself today?

“My core vocation now is to be in relationship with those I interact—my family, friends, people I meet. We’re all wayfarers…wayfarers on the way to God with God.”

Thank you for sharing your story and insights with us, Ken.

Carlen Maddux 
carlen@carlenmaddux.com
www.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 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.

PS3  My publisher, Paraclete Press, recently produced a webinar titled Restoring Yourself as a Caregiver: A Spiritual Perspective. It’s a conversation with two other of its authors and me. If you’d like to check it out, you can click here. The conversation starts at 4:00.

‘The Lessons My Mother Taught Me on Our 30-Year Journey’

Thirty years.

Thirty long years.

Three seemingly endless decades…of helping care for her Mom living with Alzheimer’s and its many volatile, disruptive, and yet sometimes calming symptoms. Lori La Bey was 25 when her mother started displaying some odd behaviors. She was 55 when Dorothy died in 2014 at age 86.

In the between years Lori, the only daughter of three children, shouldered much of the responsibility for her mother’s care; she married; she gave birth to a daughter; she transitioned from a health care job to a successful real estate career; and through five of those years she helped care for her father with cancer.

(And I thought the 17 years our family lived through Alzheimer’s were alarmingly hard, starting when Martha turned 50 in 1997, while I was publishing our regional business magazine and our three kids were in high school and college.)

“Mom, in fact, was the first to start worrying about her memory,” says Lori. “She left the stove on, picked the phone up the wrong way, things like that. I remember one Christmas we went shopping in the mall that Mom knew inside out. But this particular year, she just sat down, staring like a deer in the headlights, and on the way home started repeating questions over and over.”

Lori’s father asked her to call their doctor of 40 years to discuss these memory issues. “But I was blown off,” she says. “In fact, the doctor’s nurse later called Mom and said, ‘Your whole family thinks you have Alzheimer’s,’ which isn’t what I said.” She in fact told the nurse that her mother thought she had Alzheimer’s and the family just knew something is very off. “This nurse’s call upset Mom to the point she locked herself in the bathroom and wouldn’t come out. It took me a couple of hours to convince her to.”

After ten years of living through such frustrating symptoms, a neurologist finally did diagnose Dorothy with Alzheimer’s; that was right after Lori’s father Dean was diagnosed with cancer.

Lori was 42 when she assumed full responsibility for the wellbeing and care of both parents. It was another four years before they moved into a nursing home. Meanwhile, she and husband Tom still had full-time jobs with daughter Danielle now about 8 years old. “Tom and Danielle both were wonderful emotional support during this time. My parents always felt Tom was a son rather than a son-in-law, and he felt the same about them.” (After nearly five years fighting cancer, her father died in 2001.)

Lori, Tom, and Danielle with mother Dorothy

Rather than grind Lori down, the pain and frustration of those 30 years forged a commitment in her to help others who live with dementia and their care partners. It’s a conviction born of her experience that someone with Alzheimer’s or dementia is no less human, that the consequent loss of mental faculties is not a loss of heart and soul.

As a result, Lori decided in 2009 to walk away from real estate and to redirect her attention not only to her mother but also to other families living with Alzheimer’s or other forms of dementia, whether locally or far from home.  

Lori is now a full-time professional advocate, a graduate of the school of hard knocks, “sharing the lessons my mother taught me as we went through this 30-year journey together.” Hers is an “emotionally-based training,” Lori says—how to listen to a person with dementia; how to share; how to travel together; how to make sure their needs are met, whether at home or in a nursing home.

This self-described ‘advocate on steroids’ says, “We must educate and motivate all parties involved—staff, families, professionals, and the public—to join forces around the world to improve our dementia care culture.”  

“I speak, train, and consult families, professionals, and companies to connect on deeper levels,” Lori told Maria Shriver in her Sunday Paper newsletter, which in 2016 honored her as “An Architect of Change.”

Others have recognized Lori’s expanding efforts as well: Oprah Winfrey honored her as a “health hero” in the January 2018 issue of O Magazine. And in 2012 Dr. Oz’s Sharecare health site ranked her No. 1 of the Top 10 Online Influencers in Alzheimer’s disease.   

Lori’s advocacy operates today on several platforms, both online and in person, while her “central clearinghouse” is her website Alzheimer’s Speaks, which opened in 2009.     

In a conversation with Sharecare, Lori was asked how a caregiver can respond to the confusion or resistance that often comes from one living with Alzheimer’s: “Three small questions make a big difference: Are they safe? Are they happy? Are they pain-free? We shift our mindset by asking these questions. If a person with memory loss asks us the same question 45 times in ten minutes, it’s irrelevant—because they are safe, happy, and pain-free.”

Celebrating Dorothy’s 83rd birthday

“These three questions can help care partners to focus on the quality-of-life issues, on what’s truly important to their loved ones. They also help the care partner slow down, breathing in a calmness that often can calm their partner.”

Lori’s goal “is to shift the caregiving culture from crisis to comfort.”

Crisis.

Comfort.

Crisis. To. Comfort. Lori would be among the first to tell you that this is easier to talk about than to do. But it can be done.

I’ve heard from enough others to know that it is being done, step-by-step: Geri and Jim Taylor ... Dr. David Compton ... Rev. Cynthia Huling Hummel ... Bob Beckett ... Lynda Everman and Kathy Siggins ... Dr. Steven Cohen … and Meryl Comer, to name a few.

If our family’s experience echoes that of others, this shift from desperate chaos to a path that can be filled with meaning and purpose is not a one-time, formulaic learning. It’s an ongoing process—three steps forward, four back; fall on your face, get back up; three steps forward, none back. You can get better at it but you never “arrive,” because conditions, attitudes, and behaviors are constantly changing. And this growth process can unfold along a variety of paths, as shown by Lori and the others above.

“It’s not about striving for perfection, which adds so much stress on multiple levels,” Lori says. “Rather, it’s about making progress with each new moment we are given.”

I met Lori ten months ago when she interviewed me on her weekly radio show. Since then, I’ve followed her more closely and I’m amazed by all that she’s been able to do:

2010: She opened a YouTube channel;
2011: Launched Alzheimer’s Speaks Radio and podcast;
2011: Helped introduce what is thought to be one of the country’s first Memory Cafes;
2012: Launched ‘Dementia Chats’, conversations with those living with dementia;
2013: Working with The Lutheran Home Association, she launched in Watertown, WI, what’s thought to be the first dementia-friendly community in the United States.
2015: Sponsored and helped launch the film His Neighbor Phil, now titled A Timeless Love. “This film is 90 minutes long, and the conversation it gives rise to afterward can last just as long, or longer.”   
2015: Helped nearby Roseville, MN, become one of the nation’s leading dementia-friendly communities.
2019: Introduced a Dementia Quick Tips feature, 2-5 minutes long, with Lori focusing on some issue common to those living with dementia. “These are things I wished someone would have shared with me as I walked alongside dementia.”

In the meantime, she speaks to professional and personal caregivers and health care groups all over the country.

When I first saw Lori’s website I was overwhelmed by all the different platforms through which she delivers her message. But she’s clear that she’s not trying to be all things for all situations. For instance, she’s not trying to curate all the latest news and research about dementia that you can find on UsAgainstAlzheimer’s and other sites. And she notes that the Alzheimer’s Association has solid information and support resources for those new to the disease, as does the Alzheimer’s Foundation.

I ask Lori, “Through the 30 years of caring for your mother what gave you the most hope?”

After a moment’s thought, she responds: “I was sustained by a love for my mother, and her love for me. Also by the team that my father and I had become.”

And what distressed you the most? Without hesitation she says, “The lack of empathy and knowledge and care by the health care system. And it hasn’t changed all that much today.”

It’s out of this yin and yang of her experience that Lori was able to develop what she calls ‘Emotional Based Training’. Such training draws on stories, videos, games, music, and humor to tap into life lessons while trying to reach the participants on a deeper level. The goal of this training, she says, is to get people to look past the task at hand. It seeks to get participants to feel the impact of their actions and choices on one who lives with dementia…to think about how they would like to be treated if they were the one with dementia.

Lori leading an interactive training session

I posed this hypothetical question to Lori: “What would you tell me if I came up to you at a meeting and let you know my 50-year-old wife was just diagnosed with Alzheimer’s? Our three children are still in high school and college. This hasn’t turned our world upside down; our world was imploding before us.”

The following conversation ensued…
Me: I felt like Martha and I were tossed out of a plane 10,000 feet up with nothing to hang on to but ourselves.
Lori: You’re not alone. People often feel abandoned when hit with this news. So it’s always good to try to slow down and breathe. One good source of support today is the Alzheimer’s Association Helpline. (800.272.3900). Their trained staff is available 24 hours a day, seven days a week.

Me: Such a service may have been available when Martha was diagnosed in 1997, but I don’t remember it.
Lori: Their services and support have vastly improved since then, and today you can find much more help online. Other good places to look are the directory of Memory Cafes. And your local chapter of the Alzheimer’s Association should help you find support groups. Also more and more churches and senior citizen centers are being pro-active with dementia issues. I even know of support groups in high schools for kids dealing with dementia in their families. Also, check with your city or your local Agency on Aging to see if a Dementia-Friendly effort has been started.

It’s important to get connected with those living with dementia and their care partners. You can learn a lot from each other as well as offer each other emotional support. Find a group you feel comfortable with.

Me: What else should I do?
Lori: Ask for help. Be specific with your requests, and don’t try to judge the outcomes. When I began caring for Mom, my brothers said they wouldn’t help because they felt they couldn’t meet my standards. I was pretty much a perfectionist in those early years.

Me: I too had problems with perfectionism. I really wanted to be in control of our situation. Was there a time you were able to let this go?
Lori: Yes. It was fairly soon after I discovered I couldn’t do it all. But I probably thought it was sooner than others thought. (We both had a good laugh). I’ve learned that I just can’t control every situation and behavior. Nor am I supposed too!

With that, Lori shares a quick checklist for care partners to consider. Don’t try to do these all at once, she says. Do a few at a time as you become more comfortable:

1.    Enable your loved one; don’t disempower them. Slow down and realize that something doesn’t have to be done in two seconds. Don’t try to fix a particular behavior, be supportive.
2.    Laugh at yourself. This is really important. And sing and dance and play music with your partner. These can change our body’s chemistry, yours and your partner’s.
3.    Pay attention to your partner’s non-verbal communication. We too often are focused on just the verbal. Learn better communication techniques; you can find some on YouTube.
4.    Listen to your body. This is huge. If we don’t, we’re creating another crisis yet to come.
5.    People want to help, so stay connected with friends and family, with and without your partner. Some current friends may not stick, but others will show up. Continue to live your life as best you can.
6.    When your partner is content and happy, you be content and happy. When they take a nap, be like a new mom and take a nap at the same time. Your list of things to do can wait.
7.    Finally, share what you have learned with others. You never know, you could be helping someone deal with an issue that’s completely different from dementia. A lot of issues are common to a wide range of caregiving needs.

Thank you, Lori, for sharing your story and your hard-won insights. If you would like to contact Lori La Bey, she can be reached at (651) 748-4714 or Lori@AlzheimersSpeaks.com.

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

Why Sharing Our Stories Is So Important

Dr. Daniel C. Potts is a neurologist with the VA in Tuscaloosa, AL. He’s also a highly sought public advocate for those living with dementia and their care partners. And author, poet, and singer/musician. His father died while living with Alzheimer’s. You may remember him from my post a little over a year ago…What His Father Taught This Doctor About Alzheimer’s.

As a doctor, he sees data, mega-data, and reams of data, day in and day out. Dr. Potts describes here the significance of our personal stories to the field of health care.

The Importance of Narrative

 There is no greater agony than bearing an untold story inside you — Maya Angelou

“In my opinion, we healthcare providers don’t do a good enough job supporting psychosocial/spiritual well-being (both in our patients and in ourselves).

“We should strive to help people live well both in the presence and absence of disease. Appreciation for narrative is an essential element in helping to support psychosocial/spiritual, and thereby physical well-being.

“We live in a society increasingly characterized by data inundation without the framework of depth, ethics, knowledge, and narrative to always make that data meaningful. Data uncoupled from knowledge of and connection to narrative is not always helpful, and can be harmful or misinterpreted. Just because data can be acquired doesn’t mean that time and effort should be expended acquiring and presenting it.

“In my opinion, efforts should be made to bring back an appreciation for and use of narrative and story to let it inform, broaden, and deepen our experience.

“Educational models which make use of personal, familial, and cultural narrative should be developed, supported, and implemented for all ages in the educational system, particularly pertaining to education in health-related disciplines.

“We should stop, look each other in the eyes, and listen to one another’s stories.”

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

Thank you, Dr. Potts. Excellent insights, especially for a field that is so woven into the wellbeing of us all. And healthy advice not only for medical practitioners but also for us patients and care partners.

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

Grieving at Christmas

Rev. Kenneth Carder’s self-described calling for over a half century was to the “marginalized” among us. For twelve years he was an active bishop in the United Methodist Church, serving the Nashville and Mississippi areas before joining the faculty of Duke Divinity School. Ten years ago the scope of his ministry underwent a dramatic shift from pastor and professor to caregiver. His wife Linda, who was diagnosed at the time with frontotemperal dementia, recently died.

The following lament is from his blog Shifting Margins:  

“Grief dominates Christmas for me this year! Sparkling decorations, joyous music, holiday parties, and upbeat festivities just don't fit where I am.

“I was a teenager the last Christmas I celebrated without Linda. That was six decades ago! Even though she was not cognitively aware of the last five Christmases, she was still present. I could see her! Hear her voice! Hold her hand! Kiss her forehead! Comb her hair! Feed her! Brush her teeth! Sit silently beside her and listen to her breathe.

“Now she's gone! Memories remain, but they are accompanied by sadness for what is no more.

“Part of me is missing, too. Adjusting to who I am without her means reorienting my identity, redefining my vocation, re-ordering everyday living.

“But there is a mysterious goodness in grieving at Christmastime. It's hard to explain.

“The pensiveness I feel seems to be stripping away the superficiality of the season and confronting me anew with the profundity of the Christmas story:

The infinite God, the source of all life, who brings this magnificent and ever-expanding universe into being, entered human flesh with all its frailty, vulnerability, death, and grieving. Thereby, God has claimed all matter, including human life and death, as bearers of divine presence and love.

“The ultimate meaning of our existence is to be extensions of the incarnation, birthing and nurturing God's presence and love amid our living, grieving, and dying.

“Grief is love weeping, evidence of love shared. The longing for presence, yearning for recovered memories and lived expressions are signs that love still lives and grows. Gratitude that love remains amid death and loss gives perspective to the grieving.

“But Linda is no longer present for me to tangibly share love. That still hurts deeply!

“Christmas speaks to that hurt, too! It doesn't take it away, but it offers a means of redeeming the absence and hurt: I can enter the loss, grief, and longing of others!

“There is comfort in solidarity with those who suffer. Some are in our families. Others are neighbors. They need a gentle embrace, a whisper of comfort, perhaps a gesture of forgiveness, a word of encouragement.

“There is also comfort in extending hospitality and advocating on behalf of the vulnerable and wounded who also bear God's image, presence, and love.

“Christmas is about God coming in a helpless baby, born of a young peasant, an unmarried and pregnant teenager made homeless by a cruel governmental decree.

“The Christmas stories in the New Testament proclaim God's radical hospitality and prophetic advocacy on behalf of the powerless, despised, and vulnerable people of the world.

“Grief has energy, passion! I pray that the energy and passion of my grieving will be channeled into acts of mercy and justice on behalf of those with whom Jesus so closely identified that we meet him in them.

“That's what God wants! And, I think that is how Linda would want me to grieve her absence!

“Christmas, after all, is about God entering our grief, redeeming our sorrows, and inviting us to meet Emmanuel in ‘the least of these.’"

Thank you, Bishop Carder, for opening your heart to so many, and in so doing, opening our hearts.

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

P.S. Feel free to share this post with friends and family who you think might find hope and meaning through Bishop Carder’s experience.     

Her Strategies for Living Day to Day with Alzheimer's

Alzheimer’s is a bizarre disease. Many fear it more than cancer, stroke, heart disease, and other illnesses. To be told you have Alzheimer’s casts many of us into despair. “It’s the beginning of the end,” many feel. We certainly felt that when my wife was diagnosed two decades ago with early onset at the young age of 50; our three children were still in high school and college. Our world wasn’t turned upside down; it imploded before us.   

Geri Taylor somehow sees her early-stage Alzheimer’s differently. She seems to have taken it in stride—as yet one more of life’s obstacles to hurdle. “Mrs. Taylor was wired to absorb adversity,” writes The New York Times, “and she pictured Alzheimer’s differently, with gumption and defiance and through a dispassionate, unblinking lens.”

Alzheimer’s advocates: Live fully while you can

The year was 2012; Geri was 69 years old. She awoke with a fright one morning as she peered into the bathroom mirror: “I didn’t recognize me!” It was then that Geri knew she needed to see a neurologist.

“The diagnosis didn’t surprise me. In my work, I’d seen a lot of persons with dementia and Alzheimer’s,” including her parents and other family members. “Since my diagnosis, my career has significantly influenced our path.”

Geri spent more than four decades in the health care field, first as a registered nurse (RN) before earning a Master’s degree in public health; subsequently she served many years in administration. Before retiring, Geri was the chief operating officer of a major hospital in New York City, where she and her team developed an in-home Medicare/Medicaid program that now serves 80,000 persons.

Thus, this professional’s take on her own condition: “I am continually developing strategies to function fully as possible while compensating for my declining short-term memory. I’m also gaining comfort with the deteriorating fluidity of my language.”

A quiet reflection

(On occasion, I’ve mentioned that while negotiating our family’s 17-year odyssey I would like to have found resources and persons like several I’ve come to know today. So…I’m adding Geri Taylor and husband Jim to that wish list.)

Her self-prescribed “strategies” are creative and filled with common sense…and they evolve with the swings in her changing condition.

How does she think like this? I wonder as I listen to Geri.

Ever the caring nurse, she responds in a friendly, pointed way: “Well, if you break your leg, you need a crutch. The same with Alzheimer’s. Our goal is for me to stay independent as long I can.”

Geri has an uncanny knack of focusing this listener’s attention as we talk by phone. I can only imagine what it’s like to have a conversation with her in person.

I highlight Geri’s strategies here along with husband Jim’s insights as a care partner. (Their comments come from our several conversations; from their materials; and from a New York Times story [more on that later] and a recent interview on the Being Patient website.)

Step by step through the maze

Geri begins: “This is most important. I intentionally spend time with friends and family, and I let them know I love them”…
She realizes that people often think that an “ill person” is too consumed to think of others, and so they back away. “Knowing this, I take it as my responsibility to initiate.  And, it works! This is extremely important, as ‘feeling loved’ and having social reinforcement is a great antidote to potential sadness.”

It also worked with husband Jim. His reaction to Geri’s diagnosis was unlike hers. “I was depressed and withdrawn for awhile. Like a lot of men, I went into my cave.”

“I decided to let Jim be, to work through this the best way he could.”

Jim: “I began to reemerge after a few weeks. Geri’s patience and understanding helped me work out of it pretty quickly…When I came back to the table, we talked and talked. Finally, we decided Alzheimer’s is not going to run our lives. We are going to live as fully as we can and not worry about tomorrow.”

Out of starkness, a hue of hope

Geri: “After we shared the news, our family and friends responded wonderfully. The sooner you tell, the better they can embrace you. It’s a real gift, taking them with us on our journey.”

“I have two groups of good friends—my lifelong ones and those from about the past 10 years. My relationship with the lifelong friends is no different although my condition is hard on them. The same with my family. Nor have any of my more recent friends pulled away, yet many are full of questions relating to what they may be experiencing.”

Geri’s dance with sadness…
“For me, the emotional pain doesn’t go away, but I adjust to it day by day, making changes and accommodations. This is not denial; this is allowing other aspects of life to continue to function in the foreground.

The gift of dance

“Actually, it is no different for me than it is for anyone, whether they are living with Alzheimer’s or not. We all face the same destiny. Some of us know more specifically what might be the cause. Others are still, as I like to say, ‘free-range with the options.’

“Knowing more about the disease while dealing with the early signs allows me the opportunity to recognize the preciousness of every mundane or extraordinary experience in my life. My days are filled with gifts—a thank-you note from my niece; playing with my granddaughter; a call from a friend.”

Talking together and working through decisions as a couple has been vital to each other’s wellbeing and sense of purpose…
“This may sound unusual,” says Jim, “but while we have always had a good marriage, we have never been closer than we are now. We are united in our commitment to one another and to living fully as we can.”

Geri agrees.

Finding life in an unsought barrenscape

They spent six months before deciding to tell their family and friends of Geri’s diagnosis.

Geri: “My therapist told me not to tell anyone.” (Even as late as 2012, the stigma surrounding a “mental disability” like Alzheimer’s could be heavy and oppressive.)        

Jim: “As well intended as this therapist’s warning was, that proved to be our dilemma. Should we join this conspiracy of silence? And if we did, how should we go about living our new lives? This was the question we faced during our six-month sabbatical while keeping the diagnosis to ourselves.”

At ease with my condition, my environment, my self

Geri: “I can’t imagine living a dual life of trying to keep this a secret from our family and friends. The energy that would take! I’ve got to work at dealing with this disease rather than using my energy to hide it. The more I know, the more I accept…there’s a feeling of power within yourself to do that. I can’t imagine trying to place another persona on top of who I am.” 

Geri draws up a practical list of things to remember from one day to the next…

• Exercise and eat right. While walking, talk only when necessary. Falling—and I have—can be common with Alzheimer’s.

• Keep things as neat as possible, and reduce the number of things.

• Avoid driving myself when possible. Walk or take taxis or trains as substitutes.

• Take yoga or exercise classes to improve balance.

• Continue to read by choosing books with fewer characters and straight-line plots, all set in chronological order.

• Keep my smart phone with me at all times.

• Reflect daily on the significant aspects of my relation to family and friends.  

• Seek out others “just like me.” I’ve been fortunate that New York City has multiple programs for people with Alzheimer’s. I felt 100 percent better the day I sat down with nine other people just like me, and heard them search for words and thoughts, and at the same time, sensed their intelligence, good humor, and motivation. There is nothing like being “different” with your own people.

• My general idea is to keep all things tuned up—mobility, diet, vision, good relationships. This is probably half the medicine that we need.

Continue with your hobbies if possible, or find a new one…
Geri: “Photography has been my 30-year hobby. Retirement provided the much-desired additional time while Alzheimer’s stole much of the technical expertise. But many assists came to my rescue—auto settings on the camera, a tutor, and a six-week workshop at the Alzheimer’s Association. These supports gave me the confidence to continue my work while also showing and talking about it.”

Taking flight into the dark

“I’m the one who usually buys the brown dress. But all of a sudden my ‘color box’ has opened up. As I do my photography, I’m seeing different shapes and forms and colors from before. Now I see more globally.”

(Editor’s Note: Geri sent me a variety of her photos, several of which I show throughout this post. I am struck not only by her artistic sensibility and professional execution but also by—or is this just my imagination?—the overtones of these photos relative to Geri’s self-awareness of Alzheimer’s and its symptoms.)

Jim is Geri’s partner, not her caretaker…
Jim: “At first I was being too helpful. Geri explained to me that she needed to discover her own strategies. So I backed off.”

In our phone conversations, it was clear that Jim gave Geri all the space she needs to answer my questions and make her point. He stepped in only when Geri asked for a word or fact.

Geri: “The first need of the person living with this disease is TIME and PATIENCE. Jim and I have built a culture between ourselves for me to be comfortable enough to say, “I need you to slow down, to let me do it my way.”

Jim: “As we share our story, it’s important for others to understand that we’re not perfect. I make mistakes every day as Geri’s partner.”

Geri pipes up quickly: “And I keep a list of his mistakes.”

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

In May 2016, The New York Times published a 12-page feature in its national and international editions on Geri and Jim’s experiences, titled Fraying at the Edges. The award-winning journalist found them through the local chapter of the Alzheimer’s Association. The Taylors permitted reporter N.R. Kleinfield to follow them for a couple of years. They became familiar enough that the Taylors soon knew him as “Sonny.” (This nuanced read is well worth the time if you want to better understand what it’s like to live and respond to a disease like Alzheimer’s.)

“Sonny’s interactions with us was therapeutic for me,” says Geri.

What do you mean? I ask.

“His probing made me think. His observations and questions were mundane, to the point that he was annoying at times. But his prodding reminded me of things I’d forgotten or it helped me see in a different way. His genius was in being able to draw out the mundane and in doing so, give it meaning.”

Who? Who?

The Times’ story soon elevated the Taylors to a national platform from which they could share their story, and they’ve taken full advantage. For example, Jim gave me a rundown of all they did this past October: a) Participated in three national conferences; b) Helped develop and lead a training program designed to instruct researchers, those with dementia, and their partners on working collaboratively while researching the disease’s social and behavioral issues; c) Gave six individual presentations in person or online; d) Spent a day in Hartford, CT, to help revise the state’s Alzheimer’s plan;  and e) Spent a day in New York City on an Alzheimer’s Walk.

The Crisis in Alzheimer’s Research

Geri and Jim not only share their story nationally and locally, they also are strong advocates for clinical trials.

“We’ve decided to do everything that we can to address this issue,” says Jim. “The crisis in Alzheimer’s research, in our opinion, is not the lack of research funding. Rather, it is our inability to increase clinical trial participation. Surveys show that while 80 percent of Americans are willing to participate in an Alzheimer’s trial, less than one percent of those living with dementia actually do.”

While federal spending for Alzheimer’s research has increased six-fold the past five years to $2.4 billion, “there has been no parallel effort to increase the number of trial participants. Current recruiting methods simply are not working. We need new ideas and approaches and more funding to solve this enrollment problem, and we need them now.”

For her part, Geri—ever the health care professional—began researching soon after her diagnosis for available trials. Odds for a positive outcome from a clinical trial were not in her favor: Over a two-decade period starting in 1998 about 150 trial drugs have failed. (My wife participated in one in 1998.)

“Suddenly my color box opened up”

In 2015, Geri “had the good fortune” to be accepted into Biogen’s trial for a drug called aducanumab (where do they come up with these names?!). This trial was closely watched worldwide because it was viewed as a leading candidate for possibly modifying the disease. Then the heartbreak: Biogen discontinued the trial in the spring of 2019 due to insufficient evidence of its effectiveness. But this fall, after reviewing its data more fully, Biogen now says it will seek FDA approval for the med in the first quarter of 2020.

Geri had been on this treatment for four years when Biogen pulled the plug. Self-aware as she is, Geri thinks her condition was stabilizing during the trial. How is she now, after being off for six months? “I find it harder to remember words as I talk.” Meantime, Geri and Jim, along with the rest of the world, await the next move by Biogen and the FDA.   

But neither one is slowing down. Both are pushing hard to build a national coalition that’s focused on improving the participation rates for Alzheimer’s clinical trials. “We have a vested interest,” Jim exclaims.

In early December, the Taylors attended the annual conference of CTAD (Clinical Trials on Alzheimer’s Disease) in San Diego. In advance of the conference, they had organized an independent hour-long meeting to discuss the problem of trial participation. Twenty-seven invitees showed up, including four pharmaceutical companies, several nationally recognized researchers, a prominent advocacy organization, a national organization of clinical trial sites, the National Institute on Aging (NIA), and several individuals living with the disease.

“It was an excellent first meeting.” says Jim. “We accomplished what we’d hoped for. All bought into the problem. There was a substantive, free flowing discussion. At the close, there was widespread agreement to continue with a full-day brainstorming session in first quarter 2020. I’m busy now putting that together.”

Jim also was instrumental in helping UsAgainstAlzheimer’s create its Clinical Trial Toolkit. “It’s a step-by-step guide written for the layperson, not the professional.” If interested in participating in a trial, this toolkit can tell you what to expect from a specific trial and can point you to a trial site near you; over 100 of the nation’s top trial sites are highlighted.

…Life’s Changing Seasons…

Geri gets the last word…
“For us, as important as our national work is, we love the opportunities to meet with newly diagnosed individuals, who are struggling in a world that they did not expect to enter and are searching for guidance. These are the most rewarding days for us. Talking to people and letting them see the face and good intentions of a person living with the disease will go a long way to breaking down another’s stigma and fear.”

Geri remembers a man at one presentation who had become increasingly isolated by his dementia. After listening to her talk about photography and seeing some of her work, he was inspired to join an art class. “That makes all this worthwhile,” she says.  

“There are so many interesting turns to this journey. If I hate my diagnosis, then I hate my experience as well as myself.”

“Since we’re in this country called dementia, we might as well enjoy it.”

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

Thank you, Geri and Jim, for sharing your story and strategies with us in such a meaningful and heart-warming way.

May we let this season of Christmas and Hanukkah fill us with all hope and joy.

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

PS1 As usual, feel free to forward this post to your friends and family. If you would like to receive my posts, you can sign up here. They are free.

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. 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 three children were still in high school and college.

PS3 Ever since I published a post on the two advocates who were instrumental in making the Alzheimer’s stamp a reality, I’ve been tracking its sales. As of November, more than 8.2 million stamps have been sold raising $1.06-million for Alzheimer’s research. Starting December 1, 2019, the USPS no longer will sell these stamps other than the excess inventory at local stations. Although this stamp had a two-year life, efforts are underway to extend it. Stay tuned. Congratulations to Kathy Siggins and Lynda Everman for helping make this stamp available, and to you for making it successful by sticking one stamp at a time on your mail!

Pay It Forward: From One Caregiver to the Next

A friend from our high school days told me recently that a member of their family had been under a great deal of stress over the past year or so—personal, work, and financial—and is having memory issues, such as forgetting names and appointments and reasons for running an errand. After seeing a series of physicians with inconclusive results, this family member, now 52, is traveling to a nearby university medical center for further testing by its team of doctors.

“You’ve been through this, Carlen. What information do you have that can help us?” 

Hearing all this, our family’s experience two decades ago echoed loudly through the halls of my memory—the stress of a year-long state legislative campaign, which my wife lost by 20 votes; her listlessness following that loss; the forgetting of appointments; the trouble getting her to a neurologist; the shock of the diagnosis.

Rachel, David, Martha, Kathryn and me
four years before our world imploded.

With my friend’s request, I was surprised to realize that until now I’d never stepped back to the time of Martha’s diagnosis to ask myself: “What information is available now that I would like to have had then for Martha and me and our children?”

Information and research today are far superior and more plentiful than were available in 1997, when my wife Martha was diagnosed at age 50 with early onset Alzheimer’s, an era that I now call the “Dark Ages of Dementia”.

You might be asking yourself, “So what does this have to do with me? I’ve been living with this disease for far too long.” Or “I’ve been caring for my loved one for so many years. How can this information help us now?”

I can’t answer that for you, but this might be a good cross-check for whatever stage you find yourself today. Also, as we know only too well, with each new day too many family and friends are being hit with this kind of devastating news. In fact, Alzheimer’s and other dementia are steamrolling into the future with such massive force that four former U.S. Surgeon Generals recently warned in an Op-Ed that “Dementia Is Our Top Public Health Crisis.” 

The posts and ideas that I’m sharing here will not be new for many of you; some of you signed up for my blog from its start in the fall of 2015. And a number of you have read my book, A Path Revealed, which was published a year later.  

Reviewing what I compiled for my friend’s family (and having spent a career in journalism as a magazine editor and publisher), I believe this information would make a good “starter library” for anyone who’s staring down the barrel of dementia. This is not a fast read; it cannot be swallowed whole. There’s a lot of good information here, but do take it a step at a time, setting your own priority as to what gets your attention. And keep in mind that this is by no means a complete bookshelf of resources; you may have others you want to add.

The following are among the posts and information that I shared with my friend and what I would share with Martha and me in 1997 if that were possible. AND PLEASE NOTE: I am offering no medical suggestions here. That’s for you to discuss with your doctors.  

• What This Care Partner Is Still Learning Years Later … This is the most comprehensive, to-the-point, self-help guide I’ve encountered that’s been put together by a caregiver. My friend Bob Beckett lives outside Nashville and has been caring for his wife for a decade or so.

• Alzheimer’s Association … This should be one of your first stops. The association is much stronger today at the local level than it was two decades ago when Martha was diagnosed. Still, some local chapters offer better services than others, such as support groups, memory cafes, and educational classes. And in some areas of the country, independent associations such as Alzheimer’s Texas and Alzheimer’s Tennessee Inc. have sprung up for a variety of reasons. So do your homework.   

• “You either get on with living, or get on with dying. I’m getting on with living” … Dr. David Compton is a retired family physician in Oak Ridge, TN, who grew up in my hometown, nine years my junior. He was diagnosed in 2015 with mild cognitive impairment (MCI). I’ve been following David in a post each year since 2016. It took him a while to evolve into his current attitude.

• In the Face of Fear, Grace … Rev. Cynthia Huling Hummel’s story of living with early Alzheimer’s is inspiring. She had to step down from the pulpit because of the disease’s limitations, but she still pinch-hits for churches, sings in a country band, travels and speaks, sculpts, swims long distance, audits classes at a nearby college, and is enrolled in clinical trials. As with David Compton (and many of us), Cynthia had a lot of negative stuff to work through.

• UsAgainstAlzheimer’s … Among its many other services, this advocacy organization does an excellent job of curating and publishing each weekday the latest news in research, policy, personal stories, and patient and caregiver advocacy.

• 31 Lessons Learned from Persons Living with Dementia & Care Partners … Dr. Daniel C. Potts is a neurologist with the VA in Tuscaloosa, AL. I haven’t come across another doctor so engaged in advocacy work for those living with dementia and their care partners. His insights in The Joy in Knowing and in Being Known are most poignant.

• A Conversation with My Wife’s Neurologist … I talked with Dr. Steven Cohen, a former researcher and now retired physician, in June 2018, four years after Martha died. He touches on fear, worrying, burnout, and the progress of research, among other things.

• It’s About Quality of Life, Not Quantity … Carol Bradley Bursack posts a daily email primarily for caregivers. She writes online for HealthCentral and AgingCare, as well as for a string of newspapers. Not all relate to dementia issues but many do. Hers is one of the most practical voices I’ve come across online.

• The 36-Hour Day … This is the classic guidebook for caregivers, now in its sixth edition. First published in 1981, it was one of the few resources around when my wife was diagnosed. Despite an overabundance of guidebooks today, it still ranks right at the top. It’s stood the test of time and is a good baseline read through which to sift your questions.

• To Test for Genetics, or Not? Read On … You may be interested in the genetic aspects of Jamie Tyrone’s inspiring personal story, but I’m also sharing it for the insights of this book’s co-author regarding the solid research that has come out recently into the preventive promise of nutrition and physical exercise. Dr. Marwan Sabbagh is a neurologist and expert in Alzheimer’s diagnosis, treatment, and research; he’s the executive director of the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas.

• Illuminating the Dark Heart of Dementia … Only in the last few years have spiritual issues related to dementia been acknowledged. The book focused on in this post is unique, as indicated by its title: Dementia-Friendly Worship. It draws from a variety of faith traditions.

• If you or your loved one is at an early stage of cognitive impairment, you might want to ask your doctor about this recent news from Biogen regarding its clinical trial drug aducanumab. It had been one of the most watched and hopeful drugs being tested until the trials were suddenly shut down last spring. But just last month Biogen announced that after a fuller review of its data the trials are being reopened for FDA testing.  

• Archive of My Posts … I’ve written nearly 100 posts in the last four years. They are drawn from our family’s experiences throughout our 17-year odyssey and from many others’ inspiring stories as they’ve learned to navigate the rough waters of one form of dementia or another. You can scan these posts to see if there are others you’d like to check out.

Whatever the form and stage, cognitive impairment can be a volatile and distressing path for all concerned. BUT … you don’t have to be fatalistic and consumed with fear or depression. Obviously no two paths are the same, but we can learn from each other’s stories, from our frustrations as well as from our breakthrough moments.

As I reflect back on our family’s experiences I wish we could have had access to such resources in 1997. A core library like this would have saved me a lot of frustration, headaches, and dead ends.

I hope you can find some value here as you move forward seeking to live as fully and completely as possible under what often can be trying circumstances.

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

PS1 As usual, feel free to forward this post to your friends and family.

PS2 Heads up! My publisher, Paraclete Press, is honoring Alzheimer’s Disease Awareness Month this November with a special offer on my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. The Kindle version will be available at $1.99 for one week only, November 8th-15th. Check it out now on Amazon.

PS3 You can also help commemorate this month’s designation by buying a sheet of the Alzheimer’s first-class stamps at 65 cents a stamp. Did you know that in 1983 President Ronald Reagan enacted Alzheimer’s Disease Awareness Month? (You’ll remember he lived with Alzheimer’s in his last years.) I went to four local post office stations and found them all out of the stamps. So I went online to order a fresh batch. (Or I could’ve called toll-free at 1-800 STAMP-24.) Yes, the net proceeds go to the National Institutes of Health for Alzheimer’s research; as of September, 7.5-million stamps have been sold, raising $991,000.

The Joy in Knowing and in Being Known

I’ve often shared with you the insights of others living with cognitive impairments and of those caring for them. The stigma surrounding this issue can often seem so stubborn, so hardened, so immoveable: If you lose your mind, you’re no longer considered a person. I vividly remember my wife Martha not wanting to tell anyone—family or friend—after she was diagnosed at age 50 with early onset Alzheimer’s.  

This brief essay on one’s “personhood” by Dr. Daniel C. Potts is important. He writes with the authority of a practicing neurologist and as an advocate for those living with a cognitive impairment and their care partners. He also speaks with authority out of his own experience: After his father died with Alzheimer’s Dr. Potts, in his own words, “disintegrated into addiction, isolation, depression, and grief” before re-emerging to a more healthy life.

This is Dr. Potts’s essay…

To Be Known

“In my experience, people living with dementia will continue to express/exert their personhood all the way through the course of their lives. Innately, all of us do, but it seems there often is a purity and authenticity to this expression that develops as cognition declines.

“Pillars of personhood, the unique characteristics and gifts of the self, will continue to be present, and care partners can build a relationship around these elements. But it requires that we hone our listening and perception skills, get rid of pre-judgments and limiting expectations, be intentional about meeting them in their reality and affirming/validating them there. We must train ourselves to look for any expression of personhood, to believe that we can find it, and when we see it, to affirm it immediately. In this way, we can show them that they are remembered, loved and appreciated precisely for being who they are.

“When we behold something so sacred as the self, we should honor it, and be grateful to have seen it. And we should not try to fashion it into something our egos need it to be.

“As dementia condition advances, personhood may manifest primarily as a sense of presence or a spiritual identity that we are able to perceive in quietness, through touch, or by the comfort we can share through a song, through movement, or through being with others who know and love them (personhood is intrinsically relational). In this way, innate personhood is honored, and they are never seen as "less than." In fact, they are known, and to be known is always to be "more than..." more than a label that bears the name of a disease or disability. This is personhood at its most authentic, elemental level.

“I don't think we ever lose the desire, the need to be known. What a privilege can be ours: to demonstrate to others, through our empathy, compassion, validation, intentionality and care, that they are known.”

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

Thank you, Dr. Potts, for your experienced, heartfelt insight.

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

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here. Or you can find my book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, on Amazon.  

“You either get on with living, or you get on with dying. I’m getting on with living.”

So says Dr. David Compton. But he didn’t always feel that way. In 2015 David was diagnosed with mild cognitive impairment (MCI), and he had to retire from his family practice because of an inability to keep up. His days then were too often filled with frustration, panic attacks, and depression. (MCI is an early form of dementia that carries the risk of turning into Alzheimer’s.) When we first began talking in February 2016, David was still trying to adjust to this diagnosis; his volatile moods swung from depression to hope to denial and back.  

He has since evolved into a confident, outspoken advocate. At this stage David, now 65, is what I would call a ‘soft-hearted curmudgeon.’ He describes himself differently: “I don’t have time for BS, and neither do the people in my support group.”

“I’m not depressed today. I’m just mad. I’m mad at the disease. I’m mad at the stigma surrounding it. And I’m mad at how many physicians disregard the disease’s impact on the patient and their family!”

“No longer do I buy into the word ‘dementia,’ he flatly states. “Other doctors and researchers still may, but I don’t. It means ‘going mad’ in Latin…and that’s just too much to lay on a person.” (To honor David and his position, I’ll avoid this word where possible in the rest of this post.)

After our first conversation, David’s been willing to update his status every year since that time (in April 2017 and May 2018 and now). I’ve done this for two reasons: First, he’s the only doctor I know living with a cognitive impairment who’s capable of observing himself, his condition, and his environment with a clinical mindset, and who’s open to talking about it publicly. Secondly, we grew up in the same small town of Cookeville, TN, though nine years apart. His older sister Susan and my younger sister Alice were good friends.

Just Do It
Another of David’s mantras is, “Don’t just talk about it. Do it!” And doing it he is. In earlier posts we discussed his personal regimen for trying to keep at bay the onset of symptoms associated with MCI. If curious, you can find his regimen and the reasoning behind it in this post. He’s retained much of it, yet some has changed; more on that later.

In the past 18 months, David has expanded his fight from primarily helping himself to also helping others with cognitive impairments. He’s helping personally and politically.

Last spring, for example, he traveled four times from Knoxville to lobby legislators in Nashville to establish what’s now called ‘The Tennessee Alzheimer’s and Related Dementias Advisory Council.’ David was selected as one of 13 persons to sit on this board. He’s the sole individual designated with a cognitive impairment; being a doctor is an added plus for the board. The council has until this January to develop a plan that (1) identifies barriers to the care of Alzheimer’s disease; (2) analyzes the effectiveness of services; and (3) includes recommendations, metrics, and best practices to address gaps in service.

The Advocate with Tennessee Lt. Gov. Randy McNally

Tennessee is a bit late to the task at hand. It suffers the country’s fourth highest annual death rate from Alzheimer’s—52.4 persons per 100,000, or 3,522 deaths, according to the Alzheimer’s Association 2019 Facts and Figures document. It trails only Vermont (59.3 deaths per 100,000), Mississippi (54.5 deaths), and Alabama (52.6 deaths).  

“It’s important to be passionate about what you’re doing,” says David. “It helps me to stay focused. A commitment to something greater than myself is energizing.”

“But I really have to watch myself and not over-do it. I can’t do multiple things any more, and that still frustrates me. I must stay within my schedule’s structure. Otherwise, stress really messes up my thinking.”

While searching for a way to open our conversation, David’s voice was halting as though he were looking for the right words. But as soon as we landed on his passions, his voice changed dramatically. He became confident, clear, and emphatic.  

Gathering Support
Close to David’s heart is the support group he and an elder care attorney started last year for themselves, and then subsequently opened to others living with early-stage cognitive issues. “It just began with Monica Franklin and me talking over coffee and bagels.”  

But the group quickly grew to 25 people who are living with mild or early stage cognitive impairment. “We meet weekly in three different locations in greater Knoxville,” Monica Franklin says. “Ours is a diverse group of people who share their experiences and insights about living with cognitive impairment. And as we share with each other, we feel understood, accepted, and ‘normal.’” Their group is called “Sharing Experiences Together,” or S.E.T. for short.

Attorney Monica Franklin

S.E.T. is based on a model designed by Dementia Alliance International, according to Monica. “David and I are the guiding force and we provide oversight for the groups. We maintain control of who facilitates the group, where they meet, and the day and time. And we provide training for newer facilitators.”

Caregivers are not included in these meetings except for an occasional invitation, and each group is limited to nine or so to permit full participation by all.

“This is an organization now,” Monica says, “and while we think and hope this concept will spread, we want to develop processes and procedures to ensure that when a group calls itself a ‘S.E.T. group’, we know that they are operating with the compassion and skill necessary for everyone to have a positive experience.” 

“Stimulation from this support group is dramatic,” says David. “Some folks have joined us who were just sitting at home worrying and withering away. Now they are getting re-engaged as they talk and listen to others with comparable problems and potential solutions.”

More than one care partner has told David and Monica something to this effect: This group is the best thing to happen to my husband or wife.  

PLEASE NOTE: While S.E.T is limited to East Tennessee, if you reside elsewhere and have a neurocognitive impairment, David and Monica say you may reach out to them by email if you’re interested in learning more: info@SharingExperiencesTogether.org.

The S.E.T. team

What I hear David getting at today is this: He is determined not to buy into the fatalistic outlook so often associated with Alzheimer’s and other cognitive diseases. He would like to see a cocktail of cures yesterday but the physician in him knows that may be a while yet. However, the stigmas associated with such cognitive impairments are another matter. They need to be abolished immediately, he says—from those attitudes held by the most highly trained professional to the friend and neighbor next door.

“I push back hard if anyone tells me I’m going to get worse. I call BS.”

David pushes back not only for himself but for all those tagged with the disease. These stigmas are hurtful emotionally, yet equally important, he says, they have delayed the pace of research.

This conversation is the most emphatic I’ve ever heard David.

“The clock is ticking. There needs to be a national sense of utmost urgency. We need to diagnose these diseases much earlier and treat them with the same intensity that we do cancer, diabetes, and heart disease.”

David continues to relish two favorite hobbies…photography and cooking.

On a different front, I asked David what his weekly routine looks like now. Here’s his quick rundown:

• Monday is his Alzheimer’s day. “Our weekly S.E.T. group meets.”

• Tuesday is usually open. “But I’ve been surprised—I’m suddenly getting asked to speak to groups.”

• “Wednesday I go to a S.E.T. group in nearby Oak Ridge to help it get underway. I also attend an Al-Anon group for help with cognitive issues.”

• Thursday he attends a lecture with the Oak Ridge Institute of Continued Learning. The current lecture is on racism. “These are the smartest people I’ve ever met.” (Many are active or retired scientists and engineers, nuclear or otherwise.)

• “Friday varies; it’s often personal time.”

David also works out 5-6 days a week for an hour or more. That’s replaced his hiking, which arthritis brought to a halt. “I also stopped going to the urban kitchen a day a week—I can’t do everything.”

David continues to see his gerontologist twice a year and his clinical therapist every four to six weeks. His wife Andrea, a practicing nurse, and the therapist help David set up his regimen, and then they help him stick to it.  

Ever defiant, David leaves with this parting shot: “This disease has picked the wrong person. I do not plan on getting worse!”

Thank you, David. Your story and life continue to be inspirational and instructive for many, not only for those living with a cognitive impairment but also their caregivers and friends. And thank you, too, Monica, for your insights.

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

PS1 As usual, feel free to forward this post to your friends and family. They might appreciate it. Dr. David Compton and Monica Franklin are sharing a lot of good insights and information here.
PS2 September is World Alzheimer’s Month. Why not commemorate it by buying a sheet of the Alzheimer’s first-class stamps at 65 cents a stamp? The net proceeds go to the National Institutes of Health for Alzheimer’s research. As of August, 7.3-million stamps have been sold, raising $971,000. 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. 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.

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.

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.

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

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

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.