My Mother in Pieces

dementia in pieces of my mother

Overgrown Toenails

Oh no! My mother’s toenails, clipped just this morning, are now strewn across my kitchen floor. Pieces of my mother I’d meant to throw away. 

I’ve just spent time with her in the Memory Care facility. After my one-hour drive there, I had arrived in fear of what condition she’d be in. 

Last time I visited, only a week ago, I’d found her propped in a wheelchair in front of the communal television. Three other residents stared at a daytime drama, but my mom’s eyes were shut tight, her chin hovered above her chest, her neck swayed like a tree branch strained from the weight of her matted head. I’d moved close and whispered her name, “Sandy…Mom?” 

She’d stirred and surfaced slowly. That day, it had taken her more than an hour to emerge from the land of catatonia. For months now, she has not stepped outside the realms of dementia. 

Broken Mind

But this morning when I went through the double doors and saw my mom upright in the wheelchair at a table, I said to myself, “Thank God, today is different.”

She sits in the dining area among 4 equally silent, semi-comatose adults, some younger than her 82 years, others a bit older. I don’t know if they have Alzheimers or vascular dementia like my mom. It all looks the same to me.

“Hi, Mom,” I catch her eye from where she stares at something across the room. Her eyebrows lift and her head rotates slowly my way.  

“Oh, hi,” she says, “what are you doing here?” She seems to recognize me, her middle kid of three, all of us now in our fifties. All of us awed and alarmed at the swift changes in our mother this past year.

“I came to see you.” I touch her arm and ask if I can hug her. 

“Sure,” she says and leans in with a weak sideways squeeze.

Karen, the nursing assistant I recognize from my last visit, is handing out lunch plates. She places some mystery meat and peas in front of my mother then snaps a bib onto her neck. “Your mom got up late today, 10 o’clock.”

“Who got weighed today, what?” Mom is a bit hard of hearing and her mind scrambles the words that actually do register. 

“She said you got up late today,” I keep my tone light, a smile on my face as I smooth the bib on her chest.

Mom says nothing, plays with her fork but doesn’t lift it.

Karen continues, “She had a shower and I washed her hair but she didn’t like it much.”

I touch my mom‘s head and sift her damp gray-brown hair with my fingers. 

Heavy Head

“Play with my hair” she used to beg when a headache was heavy on her. “I’ll give you a nickel for every minute you do.”

The money was rarely tempting to 10-year-old me. Mom didn’t complain when I half-heartedly massaged her scalp. She was  satisfied by the least amount of attention she got from her busy kids. But I loved my mother so much that, even then, I had the sense to feel guilty for giving her less than 5 minutes of my time. The kind of guilt that fades fast but resurfaces in times and places like this. 

Mom looks down at her plate, makes no moves to eat. I lift the fork to her lips and she takes a bite.

Sitting across from my mother at the dining table is Janet. She’s 70 at most. Plump and smiling, I’ve seen her in the halls with a baby doll in her arms. Here at the table, no doll in sight, she’s smiling and glancing at Mom and me.

She says, “Divorced or dead, I seen him on this end but he’s not swift.” Then she chuckles, catching my eye, like we’ve shared a joke. I laugh with her for 2 seconds then quickly lift some peas to my mother’s lips.

I guess Janet, like my mother, retains some of her mannerisms even as she loses her mind. Her contagious laugh and my mother’s lifted eyebrow as she pats my cheek in pretend scolding, are old patterns their bodies hold. Though their words contain the right tones, most have lost their meaning.

Familiar Limbs

After feeding Mom a few more bites, I look around for an appropriate place to clip her toenails. No one wants to see other people’s overgrown and outdated body parts flying around the room. I wheel her to the sitting area. 

An old man named Jack is pacing back-and-forth in front of the emergency exit, his long limbs jerking in agitation. Karen asks him where he’s going. He says he’s going home. Karen tells him his daughter has his car and she’s probably running a few errands. 

“Is she coming back to get me?” 

“I think so.“ Karen lies like a pro and guides him to a chair on the other side of the living room. A fake fire flickers on the TV screen, replacing the fake aquarium from last week. Jack sits and stares at the floor, a confused look on his face.

Seeing no waste basket, I spread my jacket across my lap and cradle Mom’s size 5 foot. I peel her sock and note that her heel still bears the bruise-like bedsore formed when she lay sick from Covid nearly a month ago. I haven’t seen the bedsore on her backside in weeks and the staff says it’s not getting worse. Or better.

I try to direct the clipped nails to the jacket in my lap. When some go pinging across the room, I notice no one notices. Handling her familiar limbs, I note these crooked toes are not much different from when I was a kid, from when she was a young woman.  

Tired Feet

“Rub my feet or just squeeze,” she’d often plead from the couch as the sun was going down. I almost as often said, “No, Mom,” because my summer day was still going strong even if hers was a worn nub from her thankless job. Gilligan’s Island blared on the tv and if I did squeeze, it was distractedly. 

I rub and squeeze her feet tenderly now, sharing with her these memories of mine. She nods with an absent mind. I forgive myself for my childish selfishness, just as I would forgive my kids. Just as I know my mother forgives me.

This morning, her swollen left foot and ankle showcase those gnarly toes she’s complained about for as long as I’ve known her. Today, they sprout like the grotesque legs of a bloated tick, attached but somehow not part of the overall organism. Her ankle’s been this thick since my sister, my brother, and I made the decision last year to get help with our mother’s decline. Professionals in facilities provided an outside view of our ingrown worry about what was happening to our mother’s mind. In this past half a year, her body changed, too. New meds, institutional food. The hallucinations finally dissipated but her body holds on to the swelling. 

Stiff Legs

When I straighten her leg to get a better grip for filing her toenails, she winces, though her eyes are now closed. Is she dozing or zoning? Her dementia and her weeks in bed have weakened her. And tightened the back of her legs. Too many hours in the fetal position. I hadn’t seen it. Quarantined from it. From her. 

During my last visit, her twice-a-week physical therapist said Mom still wasn’t walking. In fact, she could barely stand.

“She should be doing more stretching.” She demonstrated how to stretch her legs back into shape. I hoped the staff was watching. I could not be there every day to rehabilitate her legs. Was this above their pay grade?

This morning, Mom seems satisfied with the wheelchair. But the staff would benefit if she could bear some of the weight of her showering, her toileting, her shuffling to and from the dining area.

My mother is mostly cooperative with those paid to care for her.

“We love Sandy, she’s always joking around,” her caretakers insist. They say she sometimes refuses to do what they ask. Who would blame her? Strangers are putting her in the shower and on the toilet, pulling down and up her adult diapers every two hours. Getting her in and out of her bed.

Today, the toenails are up to me.

Invisible Tears

When I finish clipping and smoothing those old toes, I wrap the scraps and dust in my jacket. Tucking it into my bag, I admonish myself to remember to shake it out in the trash when I get home.

“I’m going to go now, Mom, I love you. ”

“Okay, I love you too, Chris. Thanks for coming.”

Nothing in her tone to indicate emotion but she lifts the tissue in her hands and dabs at a fake tear. I can’t tell if it’s a cover up of some un-shown sadness or one of her many ways of being funny.

When I kiss the top of her head, a trickle of grief begins to fizz in my nose, thicken in my throat.

I buckle up in the parking lot and start the car. Anguish cascades through my heart and crashes in the deepest parts of me. By the time I drive the many miles home, I’ve let the waterfall wash through and forgotten all about those pieces of my mother gathered up in my jacket.

At home, I lift it unthinkingly from the bag and it spills its contents onto my floor. Oh no! She has come home with me in those jettisoned remnants of a body now broken. Always there, my mother, and now I marvel and weep to sweep her up like any other piece of dust. 

 

 

UPDATE:

My mother passed away on June 2nd, 2022 after dementia took its toll on her body and mind. Though, to me, it felt like a slow-motion nightmare, the time between her dementia diagnosis and her death was less than a year.

I had the painful privilege of being with her almost daily in her final weeks in a skilled nursing facility. She ended up there due to a bedsore she developed in her Memory Care facility. While under a covid quarantine there, she was so badly cared for, the bedsore became a deep wound that needed skilled intervention and attention. Those two weeks in bed and in isolation had left her body weaker and her dementia worse. Despite the skilled nursing wound care, she never regained her ability to walk or her ability to heal.

So there she was in the end, my dear mother, in that hospital bed, her limbs rigid, her mind lost to most of her memories.

The spring flowers waved at me each day as I passed them when entering the housing I knew would be her last. As I rode the elevator to her room, my mind and heart left the clear skies of spring and entered the murky world of a hospital corridor.

Each day I arrived in her room trying to be ready for whatever I would find. Some days, Mom seemed to recognize me and lifted her lips in a slight smile. Other times, she stared past me, and refused to eat or drink.

I endeavored to alleviate the suffering we were sharing in that sunny room with a view of which she wasn’t aware.

Each hour we spent together, I smoothed her frown and combed her hair. I cleaned her eyes and urged her to sip water, maybe playing her some music. Whether plying her with her favorite ice cream or soothing her with her favorite Out of the Grey song, I did my best to say good-bye to my mom many times along that long road of suffering.

Days before she passed in her sleep, I told her the story of her life and mentioned her children, grandchildren, and great grandchildren by name. I let her know that each of us loved her, were safe and happy, and that she was safe and could be happy, too,

“Be free, Mom, free from worry about the people you love. You’re free to finally just be.”

What would you be, if free to be anything you wanted?

what would you be if free to be anything

Free to be anything? You might be surprised by your answer. I sure was.

3 Parts to the Story 

My friend, Melissa, asked this intriguing question one evening at a gathering of friends. Whenever she and her husband, Ken, throw their doors open, my husband and I join the party. The conversation spins up a notch when Melissa invites her guests to invest some energy beyond the small talk. She posed this question to a group of four couples who had gathered to eat and laugh in her kitchen:

“What would you be, if you were free to be anything you wanted?”

Each of us eight answered with unpredictable and somewhat surprising dreams. My answer popped into my head and bounced out of my mouth before I could edit and filter it:

“When I am old, I will live alone in the woods. I will know the names of every tree and the songs of each bird I meet. My hair will flow long and silver-grey upon my shoulders. My name will be Willow.”

Everyone’s eyes widened, then slid sideways toward my husband, Scott. He said, with half a smile, “Where am I in this story?”

Okay, so it wasn’t very nice to erase him from my old age. But his absence in the picture made me wonder what was at the heart of my imaginary scenario. Was there a bigger story lurking in the shadows of my answer? Upon examination, I discovered 3 parts to my rough sketch of who I’d be if truly free.

what would you be if you were free to be anything?

Part 1: A Fairy Tale

First, living alone in the woods is my fantasy of freedom from the challenges of human relationships. I am an introvert. Social interactions sap my energy. Sustained focus on the faces and feelings of those I most love requires an output of energy that asks for rest and space—sooner rather than later.

Also, I grow calm and strong whenever my feet sink into the earth’s mossy soil and I can listen and look for God in His creation. Plus, learning the names of the trees and the calls of the birds has been my passion lately.

However, pure peace in isolation is just a fairy tale. Even though a hidden forest path enchants me, I realize any magical setting in a sunny wood could become a nightmare when the sun went down. The big bad wolf of loneliness would surely come knocking at the door of my little haven in the woods. Indeed, I love my husband and my people and I know I need them close.

Part 2: Observing the Woman in the Willow

But, the image of an old woman with silver-grey hair comes from an actual place:

Mrs. Zook lived close to the home I grew up in. As a child, I only glimpsed her across the parking lot that connected our houses. Her austere dresses and tightly contained hair—always up in a traditional Mennonite bun—created the impression of a stiff old woman. However, the graceful weeping willow tree that shrouded her lawn drew me with its mystery. I remember the day I dropped my bike to creep in for a closer look. Skirting the outer edge of the unfenced yard, I parted a few of the willow’s draping green branches.

Old Mrs. Zook stood beneath the tree in a cottony nightgown, brushing her freshly washed, silver-grey hair. It flowed long and lovely as the willow branches under which she hovered.

Unaware of my stare, Mrs. Zook seemed free from care in the cool shade on a hot day. That picture of the woman in the willow, one of grace and ageless beauty, enchanted my ten-year-old soul and touches me still.

Part 3: Going with the Flow

The third part of my free-to-be story is that Old Age is creeping up on me. She will, God-willing, knock on my door in a few years. Beyond my desire to live a simple and contemplative life, is the wonder of what I will become. Already, I sense my tendency to stiffen and settle, to give way to a negative outlook. Instead, I’d rather keep stretching, stay flexible, and learn to go with the flow of life.

Will my body and spirit succumb to the stifling effects of gravity and pain? Or will I find the strength to keep growing and bending with the wind? I don’t want my heart to close, becoming pinned like a tight hair bun. On the contrary, I hope to stay open like a willow, sharing grace and beauty in the place God plants me. I pray my trajectory of 56 years has not taken me too far afield of the accepting, compassionate old woman I wish to become.

So, those questions and hopes combined with the memory of Mrs. Zook elicited that unedited answer to my friend’s question. And they became the springboard for my next creative project:

I wrote a novel called The Woman in the Willow.

Finding Freedom in Fiction

With The Woman in the Willow, I was free to try on my character, to create a drama exploring her choices. I wrote my novel, in part, to search for the sage in me, the woman who ages with wisdom. My fiction asks,

Can an old woman flower and flow, despite her heart’s instinct to tighten and close?

It’s the story of Catherine Hathaway, a woman struggling to forget her traumatic past by hiding away in her homemade haven. When a precocious and lonely child challenges her isolation, she refuses to open her gate or her heart to the neglected girl. The resulting tumult stirs unsettling memories and threatens to sweep the woman away in a flood of grief and loss. What part will the willow tree play in transforming Catherine into the woman she wants to become?

Stay tuned to find out. My book will launch into the world on September 1st, 2020!

Perhaps your answer to the question, ‘What would you be, if you were free to be anything you wanted?’ contains an important part of your story.

In it are fragments of your dreams, shadows of your past, and seeds of what you want to become. In between is who you are now. Make that imaginary sketch to test the final portrait you will paint. Let the vision and the dream write the story of your becoming, like the woman in the willow has for me.

Subscribe here to find out more about The Woman in the Willow and receive the book’s cover reveal in your inbox!

Leave a comment about your answer to the question: “What would you be, if you were free to be anything you wanted?”

 

Finding Freedom In Confinement

finding freedom in confinement

Are you finding new freedom in this self-imposed confinement?

Living With Limitations

Social distancing and sheltering in place in the time of Coronavirus have created a unique situation for many of us.

For example, a friend who lives alone is now working from home. This could double the loneliness for her, but at least she can spend more time outside in her yard. And she’s finding ways to connect with friends at a distance. I’ll be seeing her face when we talk via screens this weekend.

finding freedom in confinement

I know an older couple in my neighborhood who thrive on shopping and dining out. They will suffer from cabin fever, no doubt. But the neighbors are checking up on them through calls and texts, keeping tabs without touch.

My default mode is homebody. Staying put to avoid contaminating crowds isn’t much of a hardship. Walking in the small creek behind our home is as good as going dancing for me.

However, my husband, Scott, and I have a baby grandson and a daughter and son-in-law who are expecting in June. Should we stay away from them? We adults are trying to decide if full quarantine is smarter than the less extreme social distancing we are practicing. Can we actually keep from seeing and hugging family members? Some unfortunate people are truly cut off from their families. They are choosing this for safety or because someone is sick with this invisible, insidious virus.

The new limitations and tough choices are shocking.

Sudden Seclusion

One of my greatest fears is being disconnected from my family. The horrors of history tell of those who’ve suffered in gulags and POW camps. I do not linger long with thoughts of solitary confinement. The idea of forced isolation, alone with no husband, no kids or grandchildren, makes me ask, “How would I fare; would I find a way to be free inside a cell?”

If I had access to books, I would be free to read, read, read. With pen and paper, I could write, free of distraction. But without family interactions, could I survive through meditation or cogitation? Or die a slow death in lonely rumination?

I guess I’ll never be locked up in solitary. But I’m feeling the walls closing in. What do the walls of my home offer that I haven’t grasped? From those whose worries are weightier, I ask, “Are you finding any freedom in this sudden seclusion?”

Chance for Change

finding freedom

Our limited choices, whether chosen or thrust upon us, magnify our chances for positive transformation.

Obviously, no one looks for change by putting on chains. But when we find our wrists shackled by circumstance, we naturally crane our necks for different ways to move, to live, to be. For some people, the challenge is discombobulating. For others, this season is downright earth-shattering. Yet, it’s an opportunity for all to discover freedom within our confines. Our physical, mental, and emotional health depend on our healthy response to this stress.
Here’s what I’m thinking:

I Am Finding Freedom From…

  1. Choice. Choice can be overwhelming. Like a restaurant with a ten-page menu, my lengthy to-do list is more of a menace than a blessing. Self-employed people, such as Scott and I, wake each morning to a bottomless pit of a list. Or an agonizingly blank slate. Either way, we start from scratch each day. I have been enjoying the simple menu of fewer choices.
  2. Worries. When the bigger story concerns a killer microbe, I worry less about writing perfect prose or if I should exercise more.
  3. Myself. Okay, it may be a stretch, but I am free to forget my face for a while. My body, my clothes, the pimple on my nose. Who cares? Yes, many working people are video-conferencing and Face-Timing and Insta-gramming like crazy. But lots of us can just stay in our jammies. Skip the mirror and quit the navel-gazing for a minute.

I Am Finding Freedom For…

  1. Creativity. More reading, more writing, yay!
  2. Thinking or not thinking. Quiet sitting or a slow walk are no longer a waste of time. I’ve got lots. Like today: I haven’t accomplished any tasks except trying to write these ideas about freedom. It’s rather liberating.
  3. Being Present. No outside events call to me. I’m not missing anything because nothing is happening. I am here. Now. In the moment in which I am.

Are You Finding Freedom To…

  1. Connect with your kids more? Your spouse?
  2. Let go of a busy schedule?
  3. Be thankful for what you have?
  4. Share with others who are suffering more than you?

People suffer without human interaction. This virus crisis amplifies our discomfort. The current limits on our ways of life have added countless new stresses. I suspect, though, we will unearth certain blessings in this mess. What freedoms have you come up with in confinement?

For more thoughts on health, read: 3 Creative Ways to Move Toward Emotional Health

 

The Distance: A Song About Change

change: going the distance

for Julian upon his high school graduation in 2010, from Mom

from the Out of the Grey project, A Little Light Left

The sun sets as we drive the Trace

I’ll never forget this side of your face

It’s not the same as it was

So much has changed since I met you

 

We can’t always connect what’s between us now

And these silent stretches are longer somehow

We turn the music way up loud

And wonder what the song’s about

 

And the music spans the distance

It’s our transatlanticism

 

C’mon, let’s drive along singing the same songs

Hear the wheels hum with our harmonies

Remember these, please

When you go on without me

 

Cos, yeah, we always go together now

But I know what I know: soon I’ll slow you down

Yeah, the time will come when I can’t keep up

And you’ll go on without me

 

Let the music span the distance

Of our transatlanticism

 

There’s a deer standing on the side of the road

So we stop to stare but she starts to go

She’s just so scared of what she doesn’t know

So many dangers on the road

 

Now we’re staring at that last bridge

And it feels like the Atlantic

Let the music span the distance

When you go on without me

Read the story behind this song in “Change: Going the Distance”

Tell Your Story: Song Lyrics

Tell Your Story

by Christine Dente from Out of the Grey: “6.1”

Round and round the thoughts keep coming
Through your head like water running
‘Til the sink begins to overflow
So you run to shut it off
Pull the plug, forget it all
But the tears leave stains upon the floor

Everybody’s got a story
I’ve got mine and you’ve got yours
I will listen if you let me in
Everybody’s got a secret sadness
That they cannot keep
Inside forever, let its strength dispel
Tell your story

Find a friend for your confession
Trusted one who loves you well
Even when he’s seen the underside
And go to Jesus, perfect priest
Who knows our weakness and our fear
Sinners, victims, seems that we are all

Everybody’s got a story
I’ve got mine and you’ve got yours
I will listen if you let me in
Everybody’s got a secret sadness
That they cannot keep
Inside forever, let its strength dispel
Tell your story