Peace

Two weeks ago my 87-year-old demented mother fell in her memory care unit and broke a hip for the second time in less than a year. Eight days later she died in a hospital under the care of Hospice, my brother at her side.

Until I sat down to write this, I was afraid I had lost my words, lost the need to write them, lost the ability to form them into meaning. But I haven’t. I’m still a writer. This remains. That’s a relief.

Oh, I’ve been writing. Lists. Notes. An obituary. Texts. Updates to family and friends. Daily journaling. But it hasn’t been creative writing. It hasn’t been this blog, or my fiction. These last two weeks have passed by, the first in a blur of pity and anguish, and the second in numb relief glazed with exhaustion, and I have not posted or published. I haven’t kept track of the days; they spill into one another, as the days and nights blended together while my mother lay dying and we waited.

For a time words have simply been inadequate to relieve the pressure of my feelings in any organized or coherent way. They flew away from me, leaving a series of kaleidoscopic impressions, sensual details so vivid they frightened me with their power.

While my mother lay dying I reread my childhood copy of The Wind in the Willows by Kenneth Graham. Reading has also largely failed to sustain me during this time. I find myself unable to focus. I read a paragraph or two, and then realize I’ve been sitting staring into space, out the window or into the garden, not hearing, not seeing, not even thinking. Just sitting. But I needed a companion for the night watches, something comforting and familiar. Something innocent.

Photo by Josh Applegate on Unsplash

The fan in my window purred during those hours, blowing in cool night air and an occasional moth or mosquito. Every night, when I go to bed, I light a tea light in a candle lantern. When calls or texts reached me, I knew when I opened my eyes if it was before midnight or after, according to whether the candle still burned. Propped up on pillows, glasses on, my small bedside lamp alight, I spoke to Mom’s facility staff, emergency department doctors and nurses. I texted with my family. I read, the well-remembered illustrations making me smile as I communed with Rat, Mole, Badger, and the ridiculous Toad, finding respite for a few minutes before turning off the light and lying awake in the dark room, listening to the fan, feeling my heart beat, resting, breathing, waiting.

While my mother lay dying and after, I’ve stained wooden pallets. My partner and I are building a 3-bin compost system against the back yard fence. We set out sawhorses. I found an old brush, a rag, a stirring stick. We bought stain. I lay a pallet on the sawhorses, brush away dirt and debris, and paint every surface. The raw wood soaks in the oil-based stain, a rich brown color. The brush is more and more frazzled. I’m sloppier than I would be if painting a wall. The pallets are splintery. Some of the boards are split or loose. I bend over, the sun hot on the back of my neck and my bare arms. Mosquitos bite me. Stain drips between the boards as I brush their edges, dappling the sawhorses, falling onto the filthy old cream-colored jeans I’ve been wearing all summer in the garden, and onto my worn-out sneakers, used only for outdoor work now. As I maneuver between the boards, stain smears the skin of my hands and wrists. I kept the phone close, in a patch of shade.

This is the only sustained work I’ve been able to do. Now and then I wash a few dishes. I’ve done a couple loads of laundry. I go out into the garden, note the trimming, pruning, composting, mowing waiting to be done, and turn away. It all feels like too much. I don’t know where to start. It’s impossible to open the garden shed, get the tools, wheel out the wheelbarrow.

But the pallets. I can do that. It’s a simple task, direct. I don’t need to make any choices. Each side takes fifteen or twenty minutes. When I’ve finished a side, I wrap the brush in an old plastic bag, cover the can loosely, let the pallet dry an hour and a half in the sun. Then I turn it over and begin again. Two coats each side. One side after another.

Photo by Manuel Barroso Parejo on Unsplash

The smell of stain. The prickly feeling of intense sun on my skin. I think about compost, recycling, breaking down life to sustain new life. I think of ashes to ashes and dust to dust. I wonder if I’ll ever use the compost bins without thinking of Mom. I wonder who names the colors of stain and paint. I chose ‘Canyon Brown’ for this project. I vaguely hear birds, cars passing by. Small groups of women walk by in clumps, hospital employees on their lunch break, talking about families, gardens, school starting, hospital gossip. I should be at work, on that same campus, just a ten-minute walk away. I should be, but I’m not. I’m here, staining pallets, waiting for Mom to die and then on bereavement leave.

Am I bereaved? How would I know? I wonder why I don’t care enough to follow the thought. I let it drift away.

I decide I want to make bread. I don’t eat bread often, so rarely make it any more. But my rosemary is bushy and ready to be harvested, and someone brought fresh home-grown garlic into work to share before … before all this. So I make a sponge, stirring together milk, a little sugar, yeast, water. I chop fresh rosemary and garlic, very fine. I take flour out of the freezer and let it warm. The dough is heavy under my hands, sticky at first and gradually becoming supple and smooth. The earthy smells of garlic and rosemary vanquish the smell of stain in my nostrils. I turn the dough, kneading. The timer ticks off seconds and minutes. I clean the bowl, grease it, use a linen towel to cover it for rising. I put it in the oven for safe keeping, because the cats are likely to lie on it or step in it, or nibble at it if I leave it out. The bread, like the pallets, is a project in stages. I don’t have to focus on any one step for more than a few minutes. I move between the kitchen and the back yard with my phone, not thinking, not planning, just taking the next step, and the next. I can’t remember times, so I write them down. About 90 minutes for the stain to dry. An hour for the bread to rise. Another 90 minutes for the pallet to dry. Another hour for the shaped loaves to rise. Another 90 minutes. An hour for baking.

Photo by Helena Yankovska on Unsplash

At the end of the day, I have two enormous round loaves of bread to cool, slice, and put in the freezer. This batch will last me for a year. I have finished another pallet. I leave it on the sawhorses to dry overnight. My stained hands smell like garlic.

I haven’t cried since the last night call, my brother telling me Mom was gone. Perhaps I cried all my tears before she went. I receive condolences with all the grace I can muster. People talk to me about God and heaven. They talk to me about Mom. They talk to me about their own experiences of death. I try to be gracious. I try to look like I’m listening, like I’m there. With my brother and sons, my partner, I can be real. The faces of my friends comfort me. They don’t need anything from me. They don’t ask for anything. I can see their concern, their love for me, their sorrow. They hug me, and smile. They talk to me about small things, the daily things I’ve lost track of – family, friends, outings, work. I pick up a friend’s daughter and feel almost normal, doing an ordinary thing, a manageable task I cannot fail.

I realize part of my feeling of unreality is rooted in a loss of identity. I catch sight of myself in the bathroom mirror and pause. I rarely look at myself in the mirror. This woman, who is she? She isn’t the disappointing daughter any more. She can’t be, if there’s no mother to disappoint. What else is she? Who else is she? I look into my own eyes and feel no shame, no guilt. Did Mom take them with her? How will I navigate my life without them on my shoulders, without the knowledge that Mom is alone, suffering, needing? For fifty years I was at her side, day and night, year after year, ineffectual, helpless to fix or heal her physical pain, her dysfunction. Feeling my failure, my powerlessness, knowing I more often made it worse than better as time went on, even though she clung closer and closer to me as she aged. She could not release me and I almost waited too long to release myself.

But the geographical distance I put between us brought no real release. She still suffered. She declined, grew confused. Her body aged and began to run down. She was just as lonely without me as she was with me, just as emotionally remote, just as relentlessly needy. She cut herself off from me, but I still carried her. Internally, I still orbited around her. I still agonized for her.

I still loved her. I always loved her. I accepted she could not find me lovable, but it made no difference. She was my mother, and I loved her. All I ever wanted was for her to be well, and happy, but I could not make it so, and in her eyes it was my responsibility to fill her need. Indeed, she told me long ago her physical pain started with her pregnancy with me. I accepted the blame, and was heartbroken, and have tried desperately to make up for it ever since.

Photo by Nicole Mason on Unsplash

Now Death has come to stop her suffering. Has mine stopped, too? I don’t know. I’m too numb to tell. But I feel different. I feel … released. I prayed for her release and freedom, not mine, but perhaps they were linked. Many times a day I think of her, hear her voice in my head, and I realize with a painful clench of my heart she’s gone. It’s over. I can’t humiliate her anymore because of what I wear, how my hair looks, what I do, who I sleep with, or, most of all, what I write. She’s moved beyond humiliation. I can’t fail her anymore. And that’s a soaring, joyful, unbelievable thought. I can’t fail her anymore.

I wonder if I’ll finally feel good enough, if I’ll do a good enough job, live a good enough life. Might I simply enjoy my small talents, my joyful work, my community, my garden? Might I immerse myself in the loveliness of life without the gnawing guilt of knowing I’m happy when she’s not, I’m companioned when she’s not, I’m relaxed and rested and peaceful when she’s not, I’m laughing when she’s not?

The last couple of times I spoke to Mom, I told her it was okay to rest now, she could let go, be at peace. We told her her loved ones and animals were well and happy, and she could relax.

I told her, and I meant it. Was I telling myself, too?

She could not release me, yet I am released. Did Death break the chains when he gathered her in? Or now, at last, have I released myself, now that she’s moved entirely out of my power and knowledge?

As I write this, it’s Wednesday afternoon. I have finished another pallet. I have written. I have sat in the sun, read a paragraph or two at a time of an old Edna Ferber novel, rested my eyes on the garden. The lily stems are turning dry and brown, as are the leaves. Sunflowers bloom. The sun is hot. The phone has been sitting on my kitchen table all morning, silent, as I go in and out. I have balanced my checking account, scheduled a private swim lesson in a home pool, ironed a tablecloth and three napkins. Tomorrow I go back to work.

A new page of my life has turned. I can’t read it yet. It’s enough to sit with it in my lap, letting my gaze wander over blue sky and afternoon clouds, the garden, our old cars, the worn wooden boards of the porch, the bruise on my left knee, the mosquito bites on my right arm, the smears of stain on my hands. It’s too bright in the sun to read this new page, too hot, too much effort. I’ll read it later.

I dare to be at peace.

Daughter’s Dream (July 2014)

I dreamt I carried my mother.

The car had slipped out of her control
with a blind will of its own,
and I thought
I knew she shouldn’t be driving.

We landed in water.
I swam to her and held her in my arms.

Then the water was gone.
I carried my mother,
but she left my embrace,
slipping free of her embattled flesh.
Irrevocably, I felt her go.
I was alone.

I carried the vacant body of my mother.
Empty beds stood all around me
but the sheets were disordered and dank,
Smeared with shit.

I carried the vacant body of my mother.
There was no clean place to lay her down.

I carried the vacant body of my mother,
seeking to slip into my own freedom,
seeking absolution.

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An Antique Land

I’m living inside this poem right now:

Ozymandias

I met a traveller from an antique land
Who said: “Two vast and trunkless legs of stone
Stand in the desert … Near them, on the sand,
Half sunk, a shattered visage lies, whose frown,
And wrinkled lip, and sneer of cold command,
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them, and the heart that fed:
And on the pedestal these words appear:
‘My name is Ozymandias, king of kings:
Look on my works, ye Mighty, and despair!’
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare
The lone and level sands stretch far away.”

–Percy Bysshe Shelley

I want to escape this haunted place, walk away, never look back, forget, and wander among green trees, feeling their breath on my face. I want the blessing of the rain on my skin, to plunge my hands into rich soil, lie open to birdsong and the sun’s touch.

I want to be free.

Yet, again and again, I find myself crouching in front of that shattered visage, tracing the frown, the wrinkled lip, the sneer of cold command, unable to leave it or look away. I remember, and weep, and try to understand how something so mighty, so powerful, can fall and break apart, become nothing more than a colossal wreck in a desert in an antique land, unvisited, unremarked, nothing but time’s debris.

I was born in the shadow of those stone legs. I watched the sculptors at work, perfecting, shaping. I learned to worship Ozymandias, to make myself small before him, to endure his stony displeasure and indifference.

I did not know his name for a long time, not until I read this poem in high school. He was called Money. He was called Status. He was called Power. He was king of kings – that I never doubted. He required unceasing sacrifice; though I sacrificed everything I had, the sneer and wrinkled lip looked down upon me in infinite contempt. I looked upon his works and saw destruction and anguish. I saw lies and shattered lives and I despaired.

By Wei Gao on Unsplash

I left. I crawled away under the weight of my own inadequacy and unworthiness, across the lone and level sands, feeling his stone gaze upon me. I left, and one day I got to my feet and walked, and then I remembered how to dance, and swim, and the world opened up for me, showing me friendship, healing and joy.

Then, across the years, across the miles, Ozymandias fell, and the ground of my being has shuddered and convulsed with the impact ever since.

Understand, when he fell it all fell. Secrets lay revealed. Lies tumbled naked in the desert sun. Ozymandias, so carefully sculpted by generations before me, disintegrated. I understood then what I was taught to call Money was really named Fear. Status was in fact Shame. The wrinkled lip and sneer of cold command were not love, were never love. The king of kings lay forgotten, impotent, slowly wearing away to sand.

“Look on my works … and despair.”

It’s all gone, the gods of my childhood, the king of kings, the money, the status, the false power.

All gone.

Except for me. I am not gone.

In Maine, I eat and sleep. I journal and write. I walk to work, talk to people, laugh, teach. I sweat on the elliptical and exercise in the pools. I pay bills, make plans, file papers. I buy groceries and cat food. I do laundry and clean. I work in the garden. I’m distracted and absentminded, prone to sleeplessness and unexpected fits of tears welling from some deep unaware place. Or, on the other hand, maybe that place is all I’m truly aware of right now.

I talk and text and email to staff at the memory care center in Colorado where my mother resides, to her hospice team, to people at the agency we’ve now hired by request to provide extra caregiving. I hear about dementia, combative behavior, falls, sabotaged bed alarms, incontinence, sleeplessness, anxiety, medication adjustment. I am called to calm Mom down as though that was ever possible, as though she trusts me or ever took any comfort from me.

And part of me kneels in the desert, watching the family money (a mere pittance, judged by today’s standards rather than those of 100 years ago) and pride, that towering edifice more important than love, more important than health and happiness, more important than anything, sink into the desert like water. Is the desert powerful enough to cleanse it? Shattered Ozymandias still frowns, wrinkles his lip, sneers his cold command, but his works have disappeared even as he himself wears away.

Do I grieve or rejoice? I try to understand. I try to feel something more than despair at the waste of lives, at the dearth of love.

One thing I know: I will not stay here, beside Ozymandias. It’s a cursed place, a dark place. I will leave it to the circling vultures, the sun, the wind, and the silence. I will leave it to Time to wear away the sneer, the frown, the wrinkled lip, the trunkless legs. I left once, and I will leave again. I know this desert is a small place and the world is wide. I know who I am now. I know what love is, and that I’m capable of it. I am no longer alone.

I would have saved my family if I could have, but my gifts have no monetary value. What I have to give, what I am, cannot be bought or sold. I do not accrue a good rate of interest. I was not judged a sound investment. I did not increase my family’s status. Ozymandias, king of kings, was incapable of seeing or knowing me, being far too dazzled with his mighty works, dissolving now into sand while I myself, still vital and alive, pause to find absolution and mourn, groping for a way forward, watching it all decay.

Questions:

  • What idols have fallen in your life?
  • What family secrets have you discovered?
  • Do you find comfort in the eventual fall of what once seemed all-powerful, or does it frighten you?
  • How have you challenged your family’s definition and expectations of you?

Leave a comment below!

To read my fiction, serially published free every week, go here:

Chaos

I have written about dance here before. In the structure I use, the 5 Rhythms Wave by Gabrielle Roth, chaos is part of the wave. The music for chaos is fast but grounded. Think Pink Floyd’s Meddle.

As I lingered on the threshold between waking and sleep this morning, thinking about loss, the subject of my last post; thinking about my distressing inability to publish my usual essay on Substack last week, and thinking about the ways in which I’m reshaping my beliefs about my family and therefore myself, I recognized the chaos part of the dance.

Photo by Leon Liu on Unsplash

To dance in chaos involves letting everything go except the beat. Chaos is about strength, not beauty. It’s about grounding and staying grounded even as the music flings us through space.

Chaos is the part where you dance till you drool.

The edge of chaos is fertile, regenerative, thick with possibility. It’s also powerfully disorganized and unpredictable. It’s exhausting, overwhelming. Too much is happening too fast. When dancing chaos, we give ourselves entirely to the music and follow it through the tumult however we can. As Margaret Shepherd said, “Sometimes your only available transportation is a leap of faith.” Add music to that idea and you have the chaos part of the dance. The car has broken down. The planes are grounded. The train has derailed. The illusion we’re in control has shattered. Our routines and schedules fall apart around us. Our internal and external worlds begin to reshape in ways we can’t understand.

I’ve been troubled in the last couple of weeks by the violence of my rebellion against doing anything except work and play in the garden. I don’t want to write. I don’t want to think or reason. I don’t care about the damn housework. Beltane, May 1st, came and went without my usual ritual and practices. I don’t want to be brave, strong, organized, compassionate, tolerant, empathetic, or responsible.

I can’t remember a time in my life when I’ve shut down like this. I’m unable to guilt or lash myself into being “productive.” I feel ashamed and scared. I don’t recognize myself.

It occurs to me this is my Beltane ritual this year. After all, Beltane is about fertility. Physical fertility, the cyclical fertility of the growing season, creative fertility. My ritual this year is being in the garden. There, with my knees in the dirt, the smell and feel of the soil, the texture of new weeds and old leaves and matted grass (we didn’t have a mower last year), I am peaceful. I know where I am. I am, literally, grounded. I don’t have my phone. Nobody needs anything from me. I bend, kneel, stoop, dig, rake and shovel compost mindlessly. I dream vaguely about new garden beds, rewilding with native shrubs and trees. Black flies come for their drop of blood. The sun shines down on me.

Right now I need to be in the garden. I don’t understand it entirely, but perhaps there’s no need to. What I do know is something in me refuses to engage with anything else. As the lilies and iris emerge, as the tulips bloom and the daffodils fade, as the lilacs bud and the magnolia blossoms fall and cover the ground, I mulch and prune and feel seismic forces beyond my control reshape me internally.

Photo by Kelly Sikkema on Unsplash

So much of what I’ve learned and believed about my family and my place in it has crumbled into dust. Old family myths have exploded with fragments of evidence from Mom’s life, unearthed in the process of selling her estate. I didn’t entirely believe in some of those myths, but they were stable. They provided a family background I was familiar with. I built an identity from the identities family members who came before me created. If I am not the despised one, the broken one, the one who doesn’t belong, the cuckoo in the nest, who am I? Has all that been yet another family myth? Has any of it ever been about who I really am or my personal value, or have I been nothing but a faceless, nameless piece in a dysfunctional family pattern?

I long for freedom. Is this the beginning of freedom?

My recent inability to force myself to take care of business, to be responsible, consistent, and productive, is terrifying. I’ve always pushed myself through any resistance or fatigue. I’ve always known I must justify my existence with constant production, pleasing, and caregiving.

Am I free of that now? If I don’t have to justify my existence because that belief is a lie based on family mythology that’s at least part lies, is that freedom? Am I brave enough to take my freedom, walk away from all the burdens (too heavy for me, but I’ve carried them anyway), and simply choose what makes me happy? I have stood at this crossroad before.

Two weeks ago I wrote about loss. Now I’m watching glimmers of new beginnings, nebulous glints of what might come into the disturbed ground of my being. I pick up trash and find rich soil beneath it. I dig up dandelions and burdocks and discover little patches of old garden. The sun touches me without asking for anything in return. I rake away last year’s debris and mix it with compost to build new garden beds. This morning, the crab apple is in bloom. The tight buds on the white lilac by the porch door gather perfume.

Meanwhile, back in Colorado, strangers live in my mother’s house. Hospice tells me Mom can no longer ambulate independently, even with her walker. A call in the middle of last night reported yet another fall, as she doesn’t realize (or won’t admit) her own weakness. Appraisal revealed my wealthy and powerful grandmother’s gold, pearls, and gemstones were mostly costume, not real. A ladylike façade. A denial of her impoverished roots. A glimpse of shame and fear that rival my own, though I never knew they were there.

Photo by Doug Maloney on Unsplash

It’s Mother’s Day weekend. A friend asked me yesterday how I felt about that, and I had no words.

What is real? What can I bear? The dirt on my knees, under my fingernails. The spectacularly itchy, burning welts of black fly bites. The egg shells, banana peels, and soggy segments of lemon in the compost pile. The lovely cupped double tulips I planted last fall, white, pink and purple. The thumb-sized bumble bee tumbling ecstatically among the pink blossoms of the crabapple. My own breath, heartbeat, sweat. The sun on my skin.

Gardens are made and remade. They die and are reborn. They go wild and survive until rediscovered. They adjust, adapt, take advantage of the edge of chaos according to their own wisdom and purpose.

For now, I’m in the garden, dancing with chaos, nurturing new life, hanging on.

Questions:

  • What is your experience of Mother’s Day?
  • In the times during which you struggle to manage your life, are you fearful or do you allow yourself to follow your needs?
  • Do you find chaos joyful and exhilarating or frightening?
  • What opportunities have you had to reframe your family?

Leave a comment below!

To read my fiction, serially published free every week, go here:

Calling Myself Home

I have returned from ten days in Colorado during which my brother and I prepared for and hosted a living estate sale. Together, we emptied, polished and cleaned my mother’s house. Thankfully, she herself was oblivious, as she is in memory care with a hospice team supporting her.

Photo by Michal Balog on Unsplash

We were successful in our goals, which were to spend time with Mom, hold the sale, and ready the house for renters, who are moving in as I write this.

It doesn’t feel like success, though. Since I arrived back home to Maine, I’ve been groping for what it does feel like, but I couldn’t come up with a clear answer until this morning.

It feels like loss. It feels like a hundred small losses.

Until I came to Maine, Mom and I lived in a small town at the foot of the Spanish Peaks in Southern Colorado. The town lies in a green (sometimes) valley nestled below the Trinchera Mountain Range and the peaks, and something about its geography brings harsh, dry winds that scour the landscape for days, filling the dry air with bits of desiccated landscape. The wind is relentless, without mercy, inescapable.

It was windy for the first several days we were there, and I feel as though I have been staked in the teeth of that wind, like a plastic bag caught on a barbed wire fence, whipped and shredded into ribbons.

I hadn’t realized before that cleaning out an old person’s house is never about just that person. Mom, as the oldest remaining family member, kept papers and pictures regarding known and unknown ancestors, fragments of hidden family stories. She had her mother’s antique armoire, filled with crystal stemware, silver, and china with gold accents. Cupboards and drawers housed ornaments, cut-glass dishes, and jewelry that belonged to my maternal grandmother. Cross stitch, embroidery, and needlepoint done by that same grandmother and my younger self hung on walls throughout the house. She held onto papers and records from my adopted father, deceased for many years. Mom still had his good parka and a pair of his almost unworn boots in her coat closet.

We recycled and shredded pounds of paper, filled and tied countless bags of trash. I packed boxes and baskets and plastic storage containers with bathroom products, cleaning products, dishes, silver, kitchen stuff. I put inexpensive jewelry on a tarnished silver tray for the sale. We used up all the old newspaper for wrapping and I put out an SOS for more, which speedily arrived. I packed boxes to ship home to myself of the few mementos I wanted and took them to the post office, one by one.

All these bits and pieces of lives, of family. A collection of nail clippers and tweezers, from rusty and stiff to new. Hundreds of greeting cards for every occasion. Old letters, report cards, school papers. Boxes and albums full of photos.

Photo by Laura Fuhrman on Unsplash

In the laundry room, I sorted through products for cleaning, polishing, waxing, staining. I found three open bottles of lemon oil for wood, sticky and congealed. I discarded old sponges, rags, scrub brushes and a broken Swiffer.

I moved Mom into that house. I painted the front and garage doors. I painted the trim around the new windows. I painted the walls in the sun room and hallway.

I felt engulfed by the past, a past I prefer not to dwell on, a past I would like to let rest in peace.

But the wind caught me, pinned me against the thorns and spines of the high desert, and had its way with me.

Is home the place that glues us together? Perhaps. Perhaps that’s why I feel unglued, fragmented, as though I have left pieces of myself in my wake for the last couple of weeks. I inadvertently left a book I was reading on a bench while waiting to meet my brother at Denver International Airport the night I arrived. It was a good book, too. Part of me still sits on that uncomfortable bench, reading, watching reunions, waiting out the slow minutes until the tall form of my brother rises into view on the escalator.

We found pieces of ourselves in that house, my brother and I. I wondered if I looked as lined and shadowed as he did. I wondered if I looked as frayed and torn as I felt. My mother’s fleshless face, fragile skin, and bewildered eyes clawed at my heart.

Part of me is on each of the two planes that carried me across the country, wedged in among strangers, my bag between my feet, my backpack between my knees, while I read and dozed and tried not to think about how uncomfortable I was, tucking my elbows in tightly so as not to intrude upon my neighbors.

Part of me sits at various disheveled, grubby, airport café tables, anonymous, utilitarian, with the hard-used look of all airport eating establishments where the high-priced food tastes of weary miles.

I cried in the shower at Mom’s house, letting the water wash my tears, my hair, my skin cells down the drain and into the wastewater system of my old town.

I found pieces of myself in the faces of my friends, in an outdoor hot tub at dawn with a dear one, in a dance with some of my old dance group, all the more poignant because of the absence of others. I filled my eyes with the majestic Spanish Peaks, looming over the valley. They anchored my life for years.

I found pieces of myself, too, on the dusty interstate highway I traveled hundreds of times during my years in that place. The pronghorn antelope, the giant wind turbines, the miles of yucca, cholla cactus and tumbleweed. The familiar place names and exits. Surely some part of me will eternally drive north and then south along those miles, some ghost, some echo.

Part of me is still standing in the 6:00 a.m. hour-long line for TSA at Denver International, shuffling forward a few feet at a time, surrounded by hundreds of other people, early-morning faces creased, crumpled, yawning, and resigned. Mothers with children. Families. Couples. Young people. Old people. Businesspeople.

By David Edkins on Unsplash

I deliberately left a book on the bus that brought me from Boston Logan Airport to Augusta, Maine. I was finished with it and I didn’t want to carry it any more. Perhaps it will be a happy find for some other traveler who will sit where I did, taking their own journey, and their hands will turn the pages I touched, their eyes travel down the printed lines.

I said hello, and then I said good-bye again, not knowing if it was a final good-bye. Hello and good-bye to the memory of the good man who was my adopted father. Hello and good-bye to my mother’s parents and their parents and theirs. Hello and good-bye to my brother. Hello and good-bye to my oldest son, now living in Denver. Hello and good-bye to my friends, to Mom’s friends, to the dusty dirt roads, to the two houses I lived in during my years in that town, to my memories, to the community, the places I shopped, the places I ate, the places I danced and worked and told stories and hiked.

Hello and good-bye to Mom and the caregivers I met and conferenced with.

So many good-byes. Too many good-byes.

And then hello. Hello to my partner. Hello to the initially disbelieving cats, who still zoom around in excitement and welcome days later. Hello to my comfortable bed, my serene room, my kitchen, my giant-sized tea mug, my laptop, my little bathroom, my electric toothbrush.

Yesterday I went out to sit on the porch and read. It was beautiful in the sun; the garden full of exuberant new life. I put my book down and weeded, discovered bulbs coming up, and planted peony roots. Those hours were the first feeling of coming home to myself.

I’ve come home to the simple rhythm of swimming, to the warm, humid, familiar routine of my job in a rehab pool facility. I’ve come home to the keyboard and the page.

I went to the store this morning. I had a list. I drifted up and down the aisles, putting a few things in the cart. I set a book I was finished with on the donation table. It was as though I walked through the little mom-and-pop store in my old place in Colorado and the Safeway in a nearby larger town at the same time. I felt confused. I walked in a dream. I forgot where things were. I couldn’t focus. I left with a small bag of groceries I didn’t feel like I really needed or could use. I came home, made a cup of chai, and used up the milk. I knew I needed more and remembered while I was shopping, but I didn’t buy any …

Too soon to shop. Too soon. I’m not all here yet. The pieces I left behind are still caught in the wind of my passing. I feel as threadbare as Mom’s memory. I wonder if all those pieces will find me again or if the wind has carried them away forever. Do I want all the pieces? Did they slough away because I no longer need them? I can’t tell. I don’t know.

Two things are clear to me. The first is something I read and wrote about somewhere on this blog. The greatest thing we can do to honor those who came before us is to live our lives fully. Grieving fully does not mean living in grief forever. Living fully means living now, not in the past. Living now cannot be accomplished with clutching hands and a clenched heart. Now is not then, nor is it a future that never arrives. Now is now: the sleeping cats, the creamy pink flowers on the magnolia outside the window, the sound of the birds at the feeders, sunlight on the neighbor’s house.

The second is that none of us can live in two places. I transplanted myself to Maine years ago, and have no regrets. My roots are watered here. I belong here. It’s my place now. We need each other. For this day, I will choose to believe all the pieces of myself I need will find me again, will gradually come home to me. The rest I will simply let go, as I’ve let so many things go during the last days and years.

Questions:

  • Have you ever been responsible for sorting through a loved one’s possessions and wrapping up their life? What was the hardest part for you?
  • What’s the best support you’ve received during a process like this?
  • How have you supported others who have needed to manage a loved one’s estate?
  • Have you ever felt so emotionally exhausted you couldn’t function? What helped?

Leave a comment below!

To read my fiction, serially published free every week, go here:

The Feeling of Dementia

In January, my brother and I traveled to Colorado to transition our mother into memory care.

As some of you know and many can imagine, a journey into dementia is an unsettling one on good days, by which I mean relatively calm days. On bad days, days of panic and confusion, days of anger and restlessness, it’s heartbreaking.

One of the greatest challenges for me is the chaos of my jostling feelings, all mobbed together and struggling for attention. I can’t feel everything at once, and I can’t focus on one thing at a time. One minute I’m entirely relieved because I know she’s in a safe, protected environment being well cared for, which has not been the case for the last ten years. Knowing she was living alone, driving, walking her dogs, and slowly losing her ability to function and manage her own life and I could do nothing about it took a daily toll.

Photo by Cristian Newman on Unsplash

The next minute empathy and compassion overwhelm me and I’m reminding myself to maintain boundaries. She is not me. I am not her. My attention needs to be on taking care of my own feelings. If I could have effectively helped and supported her, I would have started doing it when I was five years old. I never found a way because there is no way.

Then I’m angry. Angry because I tried to avoid this particular outcome. Angry because she wouldn’t help herself when she had the ability to. Angry because I’m still in the position of parenting and taking care of my parent, which has always been the case. Angry about her suffering and confusion, and mine.

At the end of every conversation we have on the phone, I tell her I love her. It’s true. I have always loved her, but was not allowed to say so. She would ignore such a statement, or dispute it. She says it back to me now. It always makes me a little bit mad. It was a thing she would not say outright before. She’d sign herself “Love, Mom,” but she wouldn’t say it. She’s not a person who offers or accepts any kind of touch. Does she really love me, or is she merely participating in the familiar ritual of the exchange? Did she feel it all along but couldn’t say it?

Even before her dementia onset, Mom wouldn’t have answered these questions. I will never know.

I’m also sad. It’s not a sobbing, tearing grief, but a gentle, diffuse one, like watching a teabag steep in hot water and gradually turn it into tea. I don’t feel it all the time. There’s resignation in it, and acceptance, and surrender.

Mom is receiving palliative care under a local hospice organization. They recommended a book to me, titled The 36-Hour Day, by Mace and Rabins. I bought a copy. It was hard to read because it stirred up uncomfortable feelings, but it’s also a goldmine of information, including the latest research and standards for dementia care. It’s enormously validating. I read about specific behaviors and the stages of dementia and realize I have been struggling with Mom’s gradual disintegration for years. Nobody else saw it, so I was alone with my fears and concerns, but I knew she was slipping and I suspected this time was coming.

What I was most hoping for from the book was a script for dealing with difficult questions and conversations. I have some professional experience with dementia and am comfortable with refraining from using logic or trying to bring anyone back to reality. Mom has always believed entirely in her narratives, which often were distorted, paranoid, and inaccurate, so I have a long and painful history of managing her stories and beliefs. However, now the briefest conversation is fraught with pitfalls I don’t know how to respond to or address. I spend a lot of time on pause, frantically trying to figure out the best way to engage with her.

Photo by Quino Al on Unsplash

The book didn’t give me a script, per se. What it gave me was a simple strategy for everything: reflect and validate feelings. Not the stories (thoughts), but the feelings. Emotional intelligence strikes again.

This was good news for me because I’m highly emotionally intelligent, even in this difficult personal context. I know how to recognize, name, and manage feelings. On the other hand, it seems like so little to offer. It’s hard to provide comfort in the context of dementia. Language feels pointless. Nonverbal communication is useless over a long distance and, in this case, in person. Mom has flinched away from me too many times for me to even think about touching her. On the phone, all I have is language. Following my impulse to reassure, to explain, to provide some kind of structure, only makes things worse for both of us. I measure my effectiveness by the level of her distress, which is eerily like measuring my effectiveness by the degree to which I can please her. Even that may not be accurate. Mom’s distress has always been extreme in the face of boundaries, limitations, the word “no,” and any questioning of her particular narratives and beliefs. It’s a personality trait having nothing to do with me personally. The mere fact of her feeling confined (which is accurate) may be the root of her distress rather than anything I’m saying or doing. Or not saying or not doing.

It occurs to me feelings live inside the just-born infant. Maybe before that. Certainly, we experience feelings long before we master language. I’m realizing intellect, logic, language, can all fall away at the end of life, too, but the feelings remain. I assume our need to be heard and validated remains.

Conversation with Mom is like wandering blind through a meadow filled with rabbit holes. Dementia is at once simple and extremely complicated. I never know how she will be or what she will say next. Sometimes she sounds down and depressed. Sometimes cheerful. Sometimes calm. Once she even told me she was “content,” a word I’ve never associated with her before. Sometimes she’s anxious, sometimes angry, sometimes groggy and hardly responsive.

When we talk, I work to set aside (temporarily) my own feelings, thoughts, memories, expectations, and predictions. I ask her how she is and listen to her response, looking for the feelings. When she tells me she needs to leave there because “everybody steals,” I sidestep the stealing accusations and acknowledge it must be an uncomfortable and discouraging way to live, and I can understand why she doesn’t like it. She perseverates on this theme off and on, and I enlarge on how difficult the feeling of losing things is, how unsettling to not be able to find our possessions. After all, she’s lost her whole previous life. Her feeling of loss, of things missing, is based in reality. On the other hand, her paranoia and fear of people (including me) stealing money from her was in place long before her dementia. I was never able to persuade her they did not reflect reality. I certainly can’t do it now.

Reflecting and validating her feelings back to her feels inadequate. It even feels condescending. But there’s nothing else I can do, nothing else to say. Witnessing her feelings is all I have left.

And, after all, maybe that’s a lot. We’re not very skilled with feelings in this culture. It’s not easy to find someone who will just listen without trying to fix or solve. Perhaps great healing lies in being heard with nothing added. I hope so.

Another constant theme is one of buying a car and going shopping when we visit. When I ask her what she needs, she can’t tell me. She needs “things.” When I ask her if she’s started a list, she never has. We are not sure she can read or write anymore. I realized when we went out to move her and worked in her house she’s a shopper. She has enough clothing for three women. Her closets were filled with shoes, both old and worn and newer. She had six or seven open bottles and jars of the same products. Her cupboards were packed with supplements and vitamins for both herself and the animals, many of them outdated. As her confusion grew, it appears she self-soothed by shopping and receiving packages in the mail. So, we talk about how much fun it is to take a day and shop for this, for that. We talk about having new things, buying special gifts for ourselves. She doesn’t want to make a list and have someone else get her what she needs. She wants to go on her own and play, buy what she wants, choose what she wants. She wants to feel free, independent, and empowered to give herself that.

She cannot understand that’s no longer possible. Even if she could, the feeling of wanting what she once had would likely persist. It breaks my heart.

Photo by Gemma Chua Tran on Unsplash

I have feelings, too. I turn to journaling, to writing. I’ve tried without success to find support groups in my area; then I found a mental health professional experienced in family trauma to speak with. I talk with Mom’s hospice team regularly; having worked for hospice, I know they want to support the whole family system. I extend to myself all the gentleness, support, and patience I extend to Mom. I hold my thoughts loosely and hug my feelings. They need comfort. They need expression. I think about boundaries and regulate my empathy. I’m newly appreciative of my own freedom and independence. I look for reasons to laugh, reasons to smile. I look for ways to connect to others. I intend to learn to receive as well as I give.

As I write this, an exuberant spring wind blows outside, pushing snow off roofs, tangling our wind chimes, shaking the lilac branches with their new, hard buds. One of the cats is stretched out on my desk in the sun. My desk calendar was in his way, so he kicked it off with his back feet. A glass paperweight pins down a card for Mom, the envelope addressed and stamped. Every Monday I put a card in the mail for her. I do it for me. She does not acknowledge them or remember receiving them. I hope they’re all displayed in her room, but I don’t know. I’m not sure she can read them. I imagine a staff person or hospice team member reading them to her. I’m not sure she can connect them with me at all. But it makes me feel better to make the gesture, and I enjoy picking out cards I think she’ll like. I’ll write a couple of lines about the weather, about the moment, about spring. I’ll sign it with the word love. I’ll put it in the mailbox and raise the flag, and the mail carrier will take it in an hour or so.

Feelings are pure. Feelings are simple. It’s our thoughts about our feelings that fester, tangle, entrap us. I want to soothe uncomfortable feelings, make the pain stop, dry the tears, turn aside the rage. All my life it’s been my role to take care of Mom, fix whatever was going wrong. I still feel her emotional dependence. I still feel the responsibility to solve every problem for her.

But Mom has traveled now to a place I can’t go and she can’t come back from. She can’t follow me, clutching at my clothing, needing, wanting, pleading, demanding, rejecting. I can’t walk beside her in a way she recognizes. We have separated. I am relieved. I am absolved. I grieve for her anguish. Witnessing her feelings without taking action to assuage them is perhaps the hardest thing I’ve ever done in a lifetime of hard things in caring for her.

But I cannot fix this. Neither of us can go back. There’s only feeling our way forward.

Questions:

  • What has been you experience, if any, with dementia in a loved one or family member?
  • What are your thoughts and feelings about hospice care?
  • What’s the hardest thing for you in supporting an elderly loved one?
  • Do you worry about developing dementia yourself? Have you made a plan?

To read my fiction, serially published free every week, go here: