How To Center Care on Story

Storybook Image

This month, Pauletta Hansel and I will offer a Cincinnati-based workshop for professional caregivers in the dementia field. While attendees will earn CEUs, they will also earn something else. Respect for not just the person in their care, but also for the stories surrounding that person. The narratives that have kept that person afloat these many years. The love inside each of those arcs.

In the past, we have offered writing workshops for caregivers and for individuals experiencing dementia.

This workshop will allow individuals to observe at the person in their care as in the whole, what is seen and unseen.

Read more about past workshops or read Pauletta’s writings on “why write about dementia.”

We look forward to seeing you at any of our workshops. If you would like more information on offering workshops where you live, email me at


Writing Workshop for Pros 2018 FINAL-page-001




When Did I Become a Caregiver?


Mom often reaches for my hands and arms, when she is cold, when she needs warmth.

That day, like many others, I was entangled in her embrace.

A question someone posed earlier floated still in my head, during the noisy, silent time of Mother’s Day tea.

When did you know you were a caregiver?

After five years with Mom, I should know the answer to that question.

But does the origin go back even further? For me, it did because of my first husband. But had that just been who I always was, a part of who I am, or was it a part of who I was becoming?

Mom only released my arms and hands when an older woman came around and waved a plate of brownies beneath Mom’s nose.

“No, thank you. We don’t need the peanuts,” I spoke up for two, shaking some blood back into my upper extremities after Mom’s grasp.

The woman, a member of the Delta Psi sorority that arrived every year to freshen the tables with linens and teapots, pleaded with her eyes for me to take one, at least one.

“OK, I’ll take a piece and just lop off the peanuts before giving it to Mom. She has swallowing issues,” I said, to sum it up nicely and not go into any lengthy discussions on digestion.

We, er, Mom, was on the fifth course of dessert, after four courses of finger sandwiches made from ham and cheese, cream cheese and zucchini bread, pimento cheese, and egg salad. We had eaten Madelines, strawberry cakes, butter cream cupcakes, and wafer that was basically carmelized brown sugar over graham crackers, something someone might bring to a campfire, and tasted equally as devilish.

I hated being the gatekeeper to Mom’s stomach, but her caregivers, the REAL ones, would have to deal with the consequences later, and since I would be out of town for a week, I’d rather not have them dissing me under their breath while I was away.

But those caregivers? They were the real partners in the scheme of caregiving, so why even ask myself the question, When did I become a caregiver? Mom was in their company twenty-two-and-a-half hours of the day, and me, all of ninety minutes.

In an earlier post, I noted my parents had named me Health Care POA. To be honest, the designation was by default as much as anything else. I was not privy to the conversations my parents might have had, or knowing them, not had, because what Italian didn’t just sweep everything under the rug or bury it beneath the tomato vines?

What then, in my makeup, brought me to the edge of this vocation time and time again?

Was it the flexibility I had in my work? Was it the fact that I must have done such a stellar job with Devin, read irony, that I became the obvious choice?

When did I even know or think of myself as caregiver for Devin?

During Devin’s bone marrow transplant in Seattle, as part of his admission, one person was to be the designated caregiver, like the designated hitter, schedule to come in off the bench, anytime, when bats were hot or cold, to pinch hit or to make a difference in the game, when the team needed a bunt or a homerun. That was me.

But before that, most people who knew me wouldn’t say I was the warmest and fuzziest person to be around. I could be rather direct, I didn’t make chocolate chip cookies for every new neighbor, only pizzelles for my favorite ones, and considering myself twenty years ago, I didn’t know how to ask for what I wanted.

And that was my first lesson in caregiving. My first lesson in what was required to be a caregiver was to become a demanding, bitchy woman who accompanied Devin to all his treatments, and went in search of a nurse the second the IV pump began beeping, or that he needed water. The list was as endless as the beeping.

But the truth is, anyone of us at anytime could be called to be a caregiver. Look at me. You don’t have to do it well. Or with a lot of enthusiasm on the days when you can’t muster happy, happy, because of menopause, or your mother twists your arms so much you think she might break it.

But you would do it. You would show up, because you can’t imagine not showing up. Because your mom took care of your kid when you took care of your husband, and isn’t that the least, maybe the very best, you can do? He might even be a better kid because he was raised by grandparents for a while, with a little more soda and chocolate than you might have liked, but hey, he was your first, you would have caught on.

So, when did I know I was a caregiver? It wasn’t because my father put my name on a few documents. He could have done that with any of my siblings. I doubt it was because I had always told Dad I would take care of Mom. I doubt it was because of my time with Devin, because by most outer appearances my actions might have appeared heroic, but those instances were difficult, and there were days when I had to admit to the harsh reality of letting go of someone I loved.

Maybe it was because of my time with Devin.

Perhaps that’s what defines a caregiver. That I will say, “no,” to endless rounds of testing, or raising Mom in and out of gurneys on ER runs, or playing keep away from countless needle pricks in her arm. That I will know how to let go.

The ultimate requirement of being a caregiver is knowing when your charge no longer needs your care. That’s when you become a caregiver.

I whispered in Mom’s ear. “I’ve got to go, Mom,” I had an Engagement/Derby party to attend and was already late.

“You have to go?” Mom repeated after me, like a little pappagallo. She was still mesmerized by the music and what might be crumbs left on her plate from the brownies, wondering if she ate them all, or if there were more treats, or what exactly she was doing there in that room with ladies wearing wide-brimmed hats, and who was the person who had just called her Mom.

A pui tarde,” we exchanged in Italian, back and forth several times.

“Love you, Mom.” I held my arms around her shoulders for a long while.

She grabbed a hold. “Love you too, honey.”

And then I slipped away.








Do Caregivers Experience Sympathy Pains?

IMG_7456Couvade syndrome. Sympathy Pains. It’s not just for pregnancy anymore.

My mother recently was hospitalized for a soap-swallowing incident. Ironically, as I observed and helped her to recover normal swallowing functions, I began to experience swallowing challenges of my own.

When she has had what I perceive to be, but she cannot share, hip pain on her right side, suddenly, I throw the right side of my back out, reaching in for a load of laundry.

When she aches. I do. When she smiles. I do.

Our pain is so intrinsically connected, that where her pain starts and ends, I cannot detect.

Couvade syndrome, also called sympathetic pregnancy, is a proposed condition in which a partner experiences some of the same symptoms and behavior of an expectant mother. These most often include minor weight gain, altered hormone levels, morning nausea, and disturbed sleep patterns. In more extreme cases, symptoms can include labor pains, postpartum depression, and nosebleeds. The labor pain symptom is commonly known as sympathy pain.
Couvade syndrome is not recognized as a real syndrome by many medical professionals. Its source is a matter of debate. Some believe it to be a psychosomatic condition, while others believe it may have biological causes relating to hormone changes.

I am convinced the same sympathy pains present in pregnancy, of which there is no medical evidence, are transmutable to those who are caregivers, those who are in a constant state of worry, obsession and love.

As such, I find myself wondering how connected am I to her brain health? What is the state of my own? Will I experience the same sort of memory loss that so devastates me at times? What would I want to tell my children, my husband, who ever is left holding the bag full of tricks to make me tick?

A cousin of mine, Debbie Wick Herd, recently posted a quote related to a similar theme of If I get dementia.  The prompt floated around in my head for days as I considered what would really be important for my loved ones to remember.

I wanted to write how I have coerced my husband to sign an agreement that he would pluck my white chin hairs and for my kids to make certain that I was served bacon at each meal.

But I went with authenticity instead of the truth.


If I Get Dementia

I want you to steady a pen
in my hands that ache to be of use,
roll out the paper in front of me
or flip on a computer
if I am still adept
at that
which I think I will be –
but may forget.

I want to still write
to feel the pulse of waiting
endlessly for the muse to strike
heartbeat bursting through my chest.
For her to paint a picture
– with words
which rush to ink the thin wood
– with words as broader strokes
this time, because though the mind
has shut down
the heart has opened to a
wider landscape
than I might have guessed.

I want you to edit my words,
craft them as you would sculpt
a bust of my being.
You will know what they mean.
Readers have always known better
than writers
what their words really

Do not fret for an agent
or whether or not to publish.
The words will find their way
in the world.
They always have.
They are like worms digging through
the refuse of human tragedy
or wiggling to the top
of human triumph.

If I get dementia,
read me stories.
You will find my most treasured tomes
tattered and scattered throughout
my life.
Then read me something fresh.
Not news, but a crisp voice,
with a new throated call
to keep the niggles at bay.

And last, read me my own words
so I may recognize them still
and say goodbye
to some of the world
I am leaving behind.


Annette Januzzi Wick

Unintended Consequences of Caring


“Rita” always asked two questions.

“Miss, excuse me. Miss, do you know what time it is,” Rita often asked in her gravely voice, whenever I visited the care home to see my mother. Rita had been a resident the past four years, same as Mom. She had reset her clock by the times when her children came to call. Rita had a bevy of children who took turns each day of the week.

“One o’clock,” I answered back.

At that point, a caregiver usually stepped in and told Rita one of her children would be coming soon. Four o’clock or three or maybe not until noon the next day. But always, each day.

The second question Rita often posed was, “Miss, excuse me. Miss, can I make a phone call?”

I visited at Arden Courts often enough. Perhaps Rita confused me for someone who worked there, someone who could help. I could, and often did.

Rita died last month, and with her death, came a thousand little ones.

When I moved my mother into her care home four years ago, I was still feeling the weight of my father’s death. I bitched and moaned and complained to staff and directors until I felt Mom was finally at peace.

Early on, I hardly paid attention to the comings and goings of other residents or the wellbeing of the staff. But over the years, I watched residents as they transitioned from their place at the table, asking for the phone or the time, to their place in my memory. And when residents died, those who remained – family of loved ones, caregivers and the residents themselves – were left to grieve.

Rita had been like family to the residents. Rita’s family had been like family to the other residents and caregivers. That was how it worked. Families and caregivers shared laughs, cries, spilled juice and cookies. We pitched in to aid each other.

I hugged many of the residents when I was around. I’m confident many guests hugged my mom when I was absent. Right now, my mom is keen on “Mike” and his soothing voice. Mike is there to visit his wife. Mom doesn’t care. Mike doesn’t either.
In Rita’s waning days, I watched as her family processed in and out of her room and mourned the slow passing of time. Those of us with loved ones there knew to let them alone. The caregivers understood this too. To stay close to the grief, but not in it.

When Rita finally passed away, I observed the caregivers in their loss. They were not “family” in name. Many would not take time off to grieve at the funeral. Long lost relatives and friends who appeared at the funeral would never know the soft face and kind hands of those that touched their loved one.

Where are the caregivers to go to grieve?

They are not called to carry the casket. No one sends them sympathy cards or flowers or picture collages. No one asks what should the deceased wear and how he or she had her hair styled, though the caregivers know those facts better than any family member.

The caregivers were left not behind with fond memories of Rita when she was 20, 40 or 60, but recollections of a woman who grappled with life in a most vulnerable state. Thus, they did the greatest amount of work in the shortest period of time.

Rita is gone and caregivers walk with a little less lightness to their step. I, too, slow when I pass Rita’s room. The length of time Rita spent in the care home, the family’s unwavering commitment, and in turn, the caregiver’s dedication, meant Rita’s death left a hole in the universe. Each time I walk past her room, though the photographs and nameplates have been removed, I feel that void.

So I seek out Mom and hug her a little tighter, to which she yells back. I embrace the women and some of the men, a little more. When the residents giggle at me, nestle into my shoulder, high five me for a Xavier win, or grasp my hand as if holding on the handlebar of a bike, I want them to stay with me, here, longer.

These years have taught me that being in proximity to the purest form of human being brings me closer too. Closer to Rita, her family, caregivers, to all who call each other family and mourn in the confines of that simple space.