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.
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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.
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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.
