“I feel like it forced you out of yourself, Daddy,” says Rachel. “I teased you, ‘Now I know what’s going on in that pea brain of yours.’ You finally felt like you needed to communicate with us, and that was a change I really appreciated.”
Says David: “Daddy, your shift was like this—before, you had always sent my allowance check to school without a note. Then after Mommie’s news broke, I started to get this epistle every three months or so, sharing what you were thinking.”
Our daughter and son were describing how I was changing after Martha was diagnosed with Alzheimer’s. Their mother always was the talker in our family—until she could talk no more.
The adjustment was hard for us all—for the children, for Martha, and for me. In many ways, I never felt more alone. My girlfriend and life partner was slipping away. Our children were hurt and confused. And my heart and head were spinning like tops, often in opposite directions.
I did start a journal. Why, I’m still not sure. I was overwhelmed by so many feelings and so much information that I needed a place to capture it all. Initially, I kept notes and observations from my readings about medical and caregiver issues. But my emotions and thoughts soon spilled on to the pages of this journal, which I kept for 11 years or so until Martha moved into a nursing home in 2008. I stopped at 14 volumes.
That journal may have saved my life during the early years of our crisis. It was a stabilizing force. I soon saw that it not only was good for me, but that it could benefit our kids as well. They needed to understand—as much as I did—what I was feeling and where my thoughts were heading. Our daughter Kathryn was still at home while David and Rachel were away at college. So whenever a significant insight came to me, I sent them pages copied from my journal.
This kind of communication cut both ways. My being as honest as I knew how with them, seemed to help free the kids to share what was on their minds and hearts. This helped us to break up the disease’s oppressive atmosphere, which could have been much worse if we hadn’t opened up with each other.
I also felt the need to share significant journal entries with the mentors who’d arisen along our path, particularly Rev. Lacy Harwell (more on him here and here) and Canon Jim Glennon in Australia (more on him here and here). Their feedback was invaluable as I kept moving into, what were for me, new territories.
David and Rachel returned home after college about the time Kathryn went away. After living with our crisis up close, David and Rachel decided to offer me a respite one weekend a month during which the two shared times staying with their mother. This may have been the most important of the many gifts I received over the course of our crisis.
I chose to spend that weekend alone, often at a nearby monastery. As I describe in my forthcoming book A Path Revealed, this gave me much needed time and space to vent my feelings, to argue with God, with myself, and with any stray dog that may have wandered innocently by.
Meanwhile, I kept as close tabs as I could on Kathryn while she was in college. I was especially concerned for her, because she was the one child at home during the two years following Martha’s diagnosis. By the time of Kathryn’s senior year (2003-2004), I knew she was coming through this crisis reasonably well when she sent me a series of poems she’d written.
Kathryn had taken a poetry workshop with four other students. As it turned out, her professor was Natasha Trethewey, who won the Pulitzer Prize for Poetry in 2007, and in 2012-2014 was the nation’s 19th poet laureate.
Kathryn’s nine poems focused on her mother and their relationship. When I first read them I couldn’t finish them, I was crying so.
Not long ago Kathryn told me, “Writing these poems was a real turning point for me. I was able to move forward with my life.”
I publish these poems in my book, one of which I share here along with Kathryn’s introduction to it…
“Through this sequence of poems I’ve been able to give voice to the voiceless—my mother and her mother. Since my mother no longer can talk—at least in a conventional sense—I’ve let this poem and others speak for her. I’m able to do this because of her. Ever since I was quite young, my mother told me, ‘What a good writer you are.’ Her voice echoes within me still, and I hear her ongoing encouragement in the last lines of this poem.”
Thank you for allowing me to speak—
for your encouragement, your questioning?
You’ve created a space where I can be
myself, true to God and my family.
It is amazing to witness the healing
power of poetry, to hear you give voice
to the voiceless, space to the [back]spaced
and words to me. I have not expressed
myself like this in a long time—not until
I faced my illness, my inadequacy
and turned from it to accept my new
reality: art that heals, soothes, hurts,
remembers. Keep on doing what you’re
doing—challenging sharing loving thank you.
Not long ago David said, “Somehow we’ve made it through the tough periods. I’m a lot healthier today than I was sixteen years ago.” Rachel and Kathryn are too. “We’ve generally had good outcomes,” David said while adding, “This is not a script you would write or wish on anyone.”
As Anne Lamott—who at times feels like a long lost sister—is wont to say, “God bless you real good.”
I am offering a free guide, "How Can My Crisis Be Turned Into A Spiritual Journey Filled With Meaning?" which shares my experience in learning how to negotiate such a trek. To receive it, and sign up for my weekly newsletter, please fill out this form:
P.S. In closing, I remind you that I’m neither a licensed psychologist/psychiatrist nor an ordained minister. What I’m sharing in this post and others is drawn from nearly two decades of experience wrestling with the consequences of Alzheimer’s disease on our family. Each person’s odyssey is unique. As you travel your own path and encounter serious obstacles—be they mental, emotional, physical, or spiritual—I strongly encourage you to start an ongoing conversation with a trusted counselor, guide, pastor, or doctor.