Two weeks after Tom and I retired from our jobs in corporate America, and while in the midst of building our dream home in a small rural town, he was diagnosed with Alzheimer’s Disease.
That was in April of 2006. And not long after, I began experiencing severe stress symptoms and began writing as a way to relieve some of that stress and to ensure that I could still feel like me as I took on the role of his caregiver.
This was the first poem I wrote about our journey through Alzheimer’s. I was very much afraid that Tom and I would be plunged into a dark place where life would immediately change and my fear comes through rather vividly.
Now, seven years later, the feelings are less about fear and more about strength and endurance. It is clearly a marathon and one does not succeed without taking care of oneself and staying strong for both.
I have tried to do that by writing poetry. It has been both my therapy and my creative outlet for my anguish and frustration as well as a pathway to new levels of grace and love.
You’ve tried to tell me how it is for you, this fog
you say has folded round your agile brain and I try to imagine
the struggle to retrieve a simple memory.
That day in San Francisco when fog obscured
the most familiar landmarks as though they never were,
everything remained the same as in the sun
but near invisible, and I had to conjure the reality,
my mind retrieving the last known vision of the bridge,
the tower, the bay, all still there but gone.
Do you remember our camping trips in the desert,
the night we shed our sleeping bags to lie under the stars
and didn’t sleep, afraid we’d miss the constellations’ path?
Can you still recall the night in Iceberg Canyon
when Luciano filled the dark with high C’s
that bounced from canyon wall to canyon wall?
Yesterday you told me that when you woke
you could not remember my name for a moment
and I was terrified that what has lurked in shadows
has now begun to skulk into the light,
to steal our careful equilibrium, carry away what is left
of our loving connection on dusty moth-wings.
What shall I do while we wait – shall I search
in dark corners and behind doors and brandish a stick
or a broom, perhaps fight a duel with the damned fog?
Or shall we squeeze life and truth from every moment,
saving grief for later, always later, but not now?
I will never be ready to remember alone.
– from “Sip Wine, Drink Stars”
I’ve been a caregiver all my life. My mother was an alcoholic and my father had Parkinson’s from the time I was six years old, so I grew up with the “need” to take care of everyone.
It is a feeling of power that no child should bear and one that distorts your world view as you mature. But you do become good at taking care of others.
You can imagine the pitfalls, but when the need is legitimate and you happen to deeply love the person for whom you are caring, you find depths in yourself that allow strength to flow when it is needed.
Still, on some days, it feels as though there is so little left to give. It was on such a day that this poem emerged.
is worn sheer,
fragile from pulling threads
to mend the fissures
of loss and grief,
unraveled in places,
worn through from stroking
wounds of disengagement,
sacred connections lost
to tangled neurons.
Still, the cloth I pull around
my empty shoulders
is strong for the task
and light enough to rise
with me in the morning,
with stubborn tenacity
to stand, alone when I must,
and find grace in the patched
and tattered garment of love
I wear to cover
– From “Dance on a Dirt Road”
Before I turned to poetry, I was a singer. From my earliest memory, I knew I could sing and if there was a choir anywhere around I was there.
Later, as I became a teenager I began to develop a rich soprano voice and fell in love with opera. Though I made other choices which gave me my four wonderful children, I have always loved classical vocal music. It is the essence of me.
To write about it has helped me stay in touch with my identity and keep my balance while going through this difficult Alzheimer’s journey with Tom.
This poem is one that has helped me lift my spirits on days when I felt like wreckage!
There Will Be Singing
Where the music plays
emptiness has no home.
It is my Sanctus, my Gloria,
like prayers pinned to a wall.
It is a Brahms lieder, a Mozart aria,
a Bach Mass that lifts me above
simple hearing to absorbing
the essence of creation, the light.
Though my existence feels slight,
I am anchored in genius that never fails.
It is the nevertheless of hope,
the sacred peril of daring
to rise, fall and rise again,
with the music, the deliberate
threshing of the significant
from the trivial, arms stretched out,
to feel the pulse in the air, thrumming
off the walls as I find my way home
by sonar ping so I can sing
from rim to rim, edge to edge,
relentlessly moving toward the sound
that immerses me, changes me,
rushes through me like a river on a mission
to transform my temporary wreckage.
– From “Dance on a Dirt Road”
For reasons I don’t fully understand, poetry is helping me make my way through this beast of a disease that is ravaging my husband.
Perhaps finding some creative or beautiful way of describing the terrible anger is healthy, or maybe it is just a steam valve which is certainly needed sometimes.
As I watch the recent accelerated decline that Tom is experiencing, I know we are heading for some exceedingly difficult times. I will try to focus on gratitude for the love we have shared for thirty years and maintain my emotional strength by writing a little each day.
I can’t write unless I read, so I keep my favorite poets always within reach -– like Mary Oliver, Maya Angelou, Jane Hirshfield, and so many more.
I know I don’t have to go through this alone. I borrow extravagantly from wisdom and grace wherever I find it.