When my mother began her slow waltz with dementia, I was living in southern Ohio, dancing in new love and blending families. Mom still resided up north, near Cleveland. Each time I visited, I had witnessed various versions of a mom I didn’t recognize. Each time I drove back to Cincinnati, I was steeped in the shadows of what was soon becoming, or had already become, the darkening of her memory.
The story of how she got from there to here has been the subject of poems, blogs and novels. But the narrative of writing as a tool to forge a new relationship with my mother is a story that is boundless.
Not long after I accepted (maybe not really) Mom’s stage in life, I had been listening to a podcast about an Alzheimer’s writing circle, begun by a well-known psychologist, Dr. Alan Dienstag, and famous novelist/playwright, Don DeLillo. I was prompted to undertake the same.
One day, sipping coffee with Leigh, a good friend from Loveland, I mentioned the prospect. She dropped a hint into our conversation.” If you ever do that, let me know. I might have some time to help.”
Thus was born Found Voices, a writing circle for individuals with mild to moderate cognitive loss who lived at the Alois Alzheimer’s Center in Cincinnati, a facility renowned for their approach in caring for residents, and also renowned for their costs.
The program director not only welcomed my pilot program. She connected us to the executive director, who promptly paid us well for such work. Little did either know, at the time, I had proposed the program to alleviate guilt I was accumulating, while not traveling the miles to see Mom.
For three years, Leigh and I plotted and planned out themes for our circle: Flying and planes. Summer. School. Baseball. Home. Love.
The participants who were with us those three years became dear to us. Mary Lou, Willhemma, Betty. Dotti. We embraced their lives and their hearts. Whatever life those residents had left to give, they gave their all.
That work that propelled me forward to write about my own mother. (www.findyouinthesun.com) That work became the seed in a relationship with Pauletta Hansel, Cincinnati’s Poet Laureate, whose own mother experienced dementia. And the two of us arrived simultaneously at the intersection of art and life. We have decided to stay there a while.
Last summer and winter, through the Alzheimer’s Association of Greater Cincinnati, we offered sessions for caregivers to write and share their musings and mutterings about their loved one experiencing Alzheimer’s or dementia. Or to write and share about the struggle in their own lives, as they contemplate a future without their loved one or a future that might closely resemble that of their mother’s, like I often do.
The poem below was excerpted from Pauletta’s blog, from our summer workshop.
The Alzheimer’s Association of Cincinnati has been enthusiastic in their support of our work. We will offer three caregiver workshops, two in coordination with the Memories in the Making program, and one trial run with professional caregivers, because they too have stories to tell, especially when they sit in for a family who can’t or won’t.
I have made a life out of my mother’s life. Not her past one, or ones, though I don’t know if she has nine or not. But the life I made has been created from her present one. It’s not the life I planned for either of us. My mother was the extraordinary organizer. She would have never tolerated an unorganized mind. But she tolerates me. And in the interim, I help others organize their mind and their love.
FREE workshops August 12, October 21 & February 10th. Sessions begin at 9 a.m. Each session is hosted at a different venue. Check the website for details.
This poem is a weaving together of snippets of writing from the participants of Cincinnati Poet Laureate Pauletta Hansel’s workshop at the Alzheimer’s Association of Greater Cincinnati on July 16, 2016. Innumerable residents of Cincinnati are caring for loved ones with dementia —mothers, fathers, husbands, wives. Their experiences of tenderness and loss are all too often untold. Credit to Pauletta Hansel for the weaving. Read more.
For As Long As We Can: Writing our Lives as Caregivers
There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.
I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.
I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.
But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.
The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.
Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.
The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.
From participants in Writing Our Lives as Caregivers
with Pauletta Hansel, Cincinnati Poet Laureate, and Annette Januzzi Wick
Alzheimer’s Association of Greater Cincinnati
I missed the Luau Party date on Arden Courts’ activities calendar. So, I was surprised when at Mom’s on a Tuesday to find a luau was to occur later, complete with sweet and sour meatballs, tiki cups, hula dancing and steel drums. Sadly, I could not partake. I wished Arden would have hosted the event on a Saturday or Sunday, despite the fact I had been inconsistent in my attendance on weekends.
In those moments, time became seamless and nearly weightless, 
Mom shot daggers at me with her hazel eyes, as if accusing me of skipping church on Sunday and daring me to produce a church bulletin with the current date.
Five days earlier, I had stopped to visit Mom, nagging her until she rose to walk outside and sit in the courtyard on a billowy summer day. I queued up all her music, cut and filed her nails and plucked a few chin hairs, at least the ones she would allow me to pluck, until she swatted my hands away. And, I watched the clock.
Settling her into an armchair with a tufted cushion in a cozy corner in the sunroom, I tried to leave but the tears kept me rooted as if they were essential to watering that family tree.
“Jeannie’s got strong hands,” Randy said to me, as he watched Mom and observed her uncanny hold on my wrist as she and I strolled through the halls of Arden Courts. Randy was the son of another resident at Arden.
When Mom sits, she reaches for my hand, rubs the soft hairs on my arms and refuses to release me to the outside world. All of her actions are tied up in her hands – when she wants to avoid someone, when she wants to go a certain direction, when she is angry and squeezes my hands because that is her means of communication, when she sees something with sparkles or sugar.
The sun’s intensity that morning had been too much for all to bear. I escorted Mom inside to the join the resident cat, and Jack came along, courtesy of the activities director.
Sometimes, the window is open a crack.
Nothing nefarious happens at Mom’s home of Arden Courts, but there is a life worth watching from above, difficult to define, and best framed by the casement of a second-story window.
On this day, the observer would have seen Mom and I walk “all the way around” and “all the way back”, less than three-tenths of a mile. But as Mom ages, it’s the movement of her feet the observer counts, and not the number of feet in her movement.
