I see you

I see you

A few weeks ago, I was at the beach and I saw a young woman walking with her two little boys and her husband.  Her husband was disabled, walking with a cane and appearing to have lost some muscle function in his arms and legs.  I keep thinking about the woman and what I would have said to her at the right time, in the right place.  This blog post is for that woman, and the other young people who are caring for an ill or disabled spouse, while raising a family.

To The Woman on the Beach:

I see you.

I see you enjoying a day in the sun with your family.

I see you including your husband, who is clearly finding it a challenge to walk in the sand.

I see you take his hand, silently letting him know you are there for him.

I see your little boys, enjoying the sand, seashells and surf like all little boys would at the beach, happily oblivious to what you and he are going through.

I see you trying to make life as normal as you can…for your boys and for your husband.

I see you putting on a happy face, even when you aren’t happy.

I see your concern for the man you love.

I see your heartache and your heartbreak…watching the man you love suffer, wondering what your future will be like, wondering if you will someday be alone.

I see your worry…worry for your husband and his future, worry for your boys and their future, worry for yourself and your future.

I see your exhaustion.

I see your resentment and your guilt.

I see your loyalty.

I see your commitment.

I see you lying in bed in the wee hours of the night, waiting for the darkness to pass and the light to return.

I see your sadness.

I see you taking one step after another, walking through the storm, hoping that someday there might be sun again.

I see you trying to find happiness wherever you can.

I see you being grateful for all the little things.

I see you wishing for things you may never have.

I see you laughing.

I see your tears, cried silently when you are alone.

I see your appreciation for the moments you have together.

I see you taking care of everyone’s every day needs, while putting your own aside.

I see you wishing you could have time to yourself.

I see you keep going even when you think you can’t.

I saw you on the beach that day.  I saw you, and I want you to know, I understand.

 

Caregiver’s Lament: Rescue Me

Caregiver’s Lament: Rescue Me

Rescue me, for an afternoon
or an hour, or a few minutes.
I no longer want someone
to come into my life
and take over all my problems
and become my hero
and the owner of my life.
I don’t want that.
I just need someone
to rescue me for a few minutes
so that I remember that it’s possible
for somebody besides me
to do some of the things I do.
So that I don’t feel
totally indispensable
to the life of someone else.
And if you would rescue me
for five minutes
and someone else would rescue me
for five minutes
then, if enough people rescued me,
I would have the strength
to rescue myself the rest of the time.
And I could be
my own hero.
 by Cynthia Rush
The yellow umbrella

The yellow umbrella

Rain.

Not the kind rain kids like to run in and lovers like to walk in, but the unkind rain that kids run from and lovers shun. The hard-driving cold rain no one wants to be out in.

They were out in it.

A mother and her young daughter, alone, at a bus stop, arms wrapped each other, heads bowed against the wind and the water going through them like they weren’t even there.

A car drove by.

‘That’s so sad,’ the passenger said, looking out at the mother and daughter.

The driver said nothing.

Two blocks up the road, the car pulled into a Walgreen’s parking lot. The driver got out, went inside and returned carrying two umbrellas, one of them a kid-size yellow umbrella. A few minutes after that, the car was parked on a side street next to the bus stop. The driver got out, walked through the driving rain to the mother and daughter, handed them each an umbrella, turned and walked back to the car. Other than a squeal of delight from the child not a sound was heard, not a word was spoken.

The passenger’s name was Empathy. The driver’s name was Compassion.

Compassion was a caregiver.

We talk a lot about the caregiver.

We talk about oxygen masks, oxygen tanks, oxygen tubes, suction aspirators, nebulizers, blood pressure kits, catheters, glucose meters, insulin pumps, lancing devices, and blister packs.

Day after day.

We talk about cleaning, wiping, dressing, undressing, transferring, lotions, meds, cooking, shopping, and doctors.

Day after day.

We talk about anger, fear, frustration, the feeling of hopelessness, inadequacy and sleeping with one eye and both ears open.

Night after night.

The thing we don’t talk about is the thing that drives them – the difference between empathy and compassion. Look it up – you’ll find something like this; While empathy refers more generally to our ability to take the perspective of and feel the emotions of another person, compassion is when those feelings and thoughts include the desire to help.

Compassion is the caregiver.

Compassion is the kid that cried when Bambi’s mother died. Compassion is the kid that couldn’t kill a bug on the sidewalk, the kid that adopted the runt of the litter. Compassion is the person that attracts people with a need, financial, physical, even just the need for a good listener.

Compassion is the caregiver.

Compassion is not weakness. It takes perseverance to get up every morning knowing the challenges of the day will likely be more demanding than those of the day before and still move toward them. It takes loyalty to stand by the person who has become someone you no longer recognize and worse, no longer recognizes you. It takes the heart and soul of someone who hears someone else cry out in pain, feels their pain and wants, more than anything, to rid the world of pain. And it takes the impossible strength to hold the hand of someone you love while they move from this world to the next.

Compassion is the caregiver.

The one carrying the yellow umbrella through the rain.


By: William McDonald, Author of Old Friends (Endless Love)

Moments

Moments

I want to do this.

I don’t want to do this.

I love doing this.

I hate doing this.

I can do this.

I can’t do this anymore.

The Caregiver.

By choice.

Or no choice.

You will be frightened.

You will be alone.

You will have doubt

And you will want out.

But only you will ever know.

And only you will ever know the moments that make it all worthwhile.

 

Diane/caregiver/Colton, California


 

I am my 85-year old father’s 64-year old caregiver. He is bedridden now and rarely speaks. His eyes do his talking for him. His eyes speak of how tired he is. He holds my hand and teaches me to be quiet and just be there. Do I talk too much Daddy? Barely a smile while nodding his head, “yes”. I laugh and try to be quiet. Our time together is growing shorter and there’s so much I want to say.

But we just hold hands.

One time he said, almost shyly, “You’re a good girl”. I stood there, suddenly 5 years old again, grinning like an idiot through my tears.

What will I remember of this last leg of his journey? All the pain and morphine? His silence? The way he reaches for my hand? I will remember all of it and treasure every moment.

For now, we just hold hands.

 

Mari/Caregiver/Burbank, California


 

Nearly all of the people I’ve cared for, in the last part of their lives it turns out, the care was mine, but the giving was theirs.

It was not my gift to them, but their gift to me. It was pure grace.

Grace, that Don allowed me to read to him, even though he didn’t need, or maybe even want me to. He knew how much it meant to me to do it.

My mother watched in quiet acceptance and love as I tried everything in my power to give her comfort and attempted to lessen her pain. 

My father knew as his strength ebbed, mine had to grow.

Each of them gave far more to me than I ever gave to them.

 

Deanne/caregiver/Kingston, Ontario


 

My husband was diagnosed with early stage dementia in June 2015. My heart was broken. A month later our son, Steven, died. How can a heart break twice?

My husband and I cared for each other but we were arguing more and more.  

I wanted out.

But I could not dessert him. I could not put the responsibility for his care on our daughter. These circumstances have brought us closer. Our shared memories have brought us closer. We have found love again.  

We live one day at a time, not thinking about the future because we have no idea if there will even be a future. Today we hugged and made a list of things that need doing so he would not forget.  Then we hugged again.

It felt good.  

Pat/caregiver/Tucson, Arizona


 

In the autumn of 2006, my beloved husband was diagnosed with Primary Progressive Aphasia, a form of dementia.  I’d noticed that this witty, funny, intelligent (two Masters degrees) man was beginning to struggle with, of all things, language. I had no idea then that nine years later he would not be able to communicate via language at all.

But the language of love and touch never left him.  

On the evening before he died, a baby goat was given to him to hold – one that had had her forelegs injured during birth.  He stroked and comforted her as he would have any living being.  That is the moment I carry with me.

The language of love and touch never left him.  

The Caregiver.

By choice.

Or no choice.

You will be frightened.

You will be alone.

You will have doubt

And you will want out.

But only you will ever know

And only you will ever know the moments that make every moment worthwhile.


 

If you are a caregiver with a moment to share, send it to williamcd75@gmail.com. I will happily share it in Part 2 of this blog.

By: William McDonald, author, Old Friends (Endless Love)

Available at: amazon.com

Cause and Effect

Cause and Effect

depression is weird.
especially for someone like me,
the always happy,
always positive,
bullshit person that I am.
to be depressed is mind altering.
it takes up space.
it controls a part that isn’t easily handed over.
a constant battle between who you are,
and who you perceive yourself to be.
so.
how do you come out of it?
should you be honest?
explain to your closest and dearest,
that you can’t go on?
or do you just go on?
and then just keep going on,
and on and on….
or do you wait out the wave?
because you know that is what it is?
just a wave.
and there will be sunshine soon.
and adventure.
and life.
just wait out the wave you tell yourself.
and you hope you can.

Coming Into Flower

Coming Into Flower

Her lips part –

a naive rose readying to open

as if to beautify

the world by saying something,

something.

 

She reaches for a glimmering

stick in shades of tangerine

night, aims

then pulls back

then aims once more.

The stern edge

lands squarely

along the upper left bloom

of her smile’s outline.

 

She presses more

tangerine layers

along the right

arch of her flower

bright colors falling into cracks

where youth once made a home

where age now welcomes

crumbs and whatever else comes.

 

Her mouth still open wide

she extends her arm

away from her half-finished life.

 

No, finish, her memory tells her.

 

She resumes

swiping one more swath

of tangerine across

the petal of her lower lip

 

then twists the lipstick

back inside its home.

 

Later, she will kiss goodbye

and leave an imprint

of her breath behind.

She

She

She has blonde hair and auburn eyes

She has a laugh that delights the masses

She wears pink barrettes and silky flowers

Did you know she’s not supposed to run?

 

She loves horses and saddles

She loves to stroke and brush their long hair

She loves to whisper gently and pat

Even when her therapist can’t hear.

 

She has a wild and creative imagination

She makes up beautiful storylands

She loves to draw them out in pictures

Even if it’s hard to control her hand.

 

She dances in her ballet recitals

She cheers for her brother’s sports

She laughs at her daddy’s funny stories

Adored by her grandparents and aunts.

 

She loves school and all of her teachers

She has friends that share her lunch

She has a crush on the boy at the opposite table

Even though she struggles to talk

 

She smiles broadly watching her favorite shows

She laughs when her brothers spin her around

She cries when she lands in time-out

But she just wanted to color the wall

 

She skips while shopping with her mother

She twirls her blonde curls with stubby hands

She shrieks with delight in the toy aisle

While faces quickly turn and stare

 

She isn’t sure how to take sympathetic glances

She isn’t sure why they give her that smile

She isn’t sure why her class is labeled “special”

Or why she seems to take a little extra while

 

She turns and looks away when people point

She pretends not to notice their stares

She  knows they think her lesser

Because she has features that deem her rare.

 

She has a flattened face and a small, wide nose

She has tiny ears and kitten-sized mouth

She has upward slanting eyes with little folds

Her chromosome 21 has blessed her all on its own.

 

Poetry by Jenna Wolfram

Truce for a Warzone

Truce for a Warzone

When her body became a warzone,

I sat wobbly-kneed in Dr. Smith’s sterilized walls, pretending to color.

He had all types of schemes and weapons and missiles to launch

inside my mother’s body.

 

To fight the bad guys.

 

This is how we conceptualized it together;

Me, all stringy hair and loose teeth,

Her, fuzzy scalp and aching bones

I like to think this juvenile explanation helped her too.

That the wartorn cells and casualties of chemo

Came to mean more than just survival.

 

She fought the urge to become a prisoner inside her own body,

This will kill the rapidly dividing poisonous cells, but may kill some healthy ones too

inside her own mind,

You have six to nine months to live (have I taken this pill yet today?)

inside her own home,

Mommy doesn’t want to be sick anymore, sweetheart

 

When the time came, my mother flew no white flag.

She offered no truce, showed not an ounce of defeat.

Two years past the doctor’s expiration date,

she left with grace.

I refuse to accept that she “lost her battle.”

She simply won unconventionally.

_______________

She was taken after summer’s storm

Pulled, the blues of her eyes

She, her – it’s foreign to refer to mother

so informally now,

like

present

tense

Questions to the waves of her grave like

“When did you know love?”

“The blue dress or the black one?”

“What’d you think of the war – all of them?

Did you march in Vietnam protests or roll your eyes?”

When did your bitten tongue turn light gold?

Instead,

I recall the way in which she folded towels,

crease out in the closet,

so we could grab one readily, she explained,

for an impromptu trip to the lake or

whoosh

how she splayed warm sheets over my giggling limbs,

freshly cleansed, still warm,

Like I thought her cheek would be

As I kissed her tomb

Goodbye

 

______________

 

The atypical cells divided & attacked

No amount of pink ribbons

Or celebrity endorsements

Can call truce for that

 

Hours in white-walled holding cells,

holding our breath,

holding hands,

holding it together,

not even fooling ourselves

 

Cancer became a swear word

Whispered between relatives like the plague

Shushed into silence like it would stop spreading that way

 

It spread anyway.

 

Submission, remission, readmission

When hospital beds become familiar

Scans, biopsies, blood tests

When the nurse sneaks you extra pudding

“for being so patient”

When your blood’s blood is victim and all you can be is

Patient.

Poetry by Kayla Blau

Changing Flight

Changing Flight

Storms of stroke blew yesterday’s plans asunder.

Weathering through its’ cyclonic turns,

complete with rage and forged with doubt,
tempered by faith and exhausting efforts,

we searched for moments of clarity.

 

It is three years today;

and we can see the sun breaking through the clouds.

 

 

 

© Sue k Green   11/15/2015

10 spiritual aspects of caregiving

10 spiritual aspects of caregiving

Caregiving is love in action.

Caregiving makes us practice patience.

Caregiving causes us to look inward.

Caregiving links us with the past, present, and future.

Caregiving makes us aware of the joy of giving.

Caregiving leads us in new directions.

Caregiving is a learning experience.

Caregiving brings out the best in us.

Caregiving helps us see what is important.

Caregiving honors the miracle of each and every life.

Tommy’s Eyes

Tommy’s Eyes

They are big and dark brown, so full of life.
When he sees you they sparkle! In fact, his whole countenance brightens.
It all begins in his eyes…
And you realize he knows love.

And if by chance you look any further, you will see a young man who requires total care..
he has never walked, or talked.
The muscles in his body have begun to contract.
But when you focus on his eyes…
You will see that he knows acceptance.

There are tears (his and mine) from muscles spasms and seizures that grip him periodically..
a machine feeds him through a tube in his stomach.. Yet
In those incredible eyes, you will see endurance.

Speak to him, you have his undivided attention
Sing to him .. he will coo along
Touch him and he will respond with a smile..
But don’t pity him… He doesn’t know it.

Now look in my eyes and see what this child of mine has taught me
unconditional love,
true acceptance,
endurance
.. joy!

by Cookie Hedinger (Tommy’s Mommy)

Semi-Private

Semi-Private

Leona snores in the next bed

Mom’s ninety-nine year old roommate

Totally deaf which at first was a plus

We didn’t have to worry about waking her if we talked loud

We could turn up Mom’s TV.

 

But recently Mother has stopped talking

Lost all interest in Turner Classic Movies

Not sure if she can even see the screen anymore.

 

The clock over Leona’s bed has read two forty-five for the past month

On Mom’s wall hangs the sweet pink wreath we made together

Last Valentines Day with the activities specialist

Rosy-looking flowers made by dipping coffee filters into red food coloring.

 

Leona and Pearl, Room 210 Beds A and B

Both completely dependent

For bathing, dressing, getting in and out of wheelchairs

And lately for eating their pureed meals.

 

Sometimes I wonder if they might have become friends

Talked or laughed together

Under different circumstances

If they were of sound mind

Could have been kind of fun.

 

With their coordinated floral bedspreads and valences

Matching easy chairs

Maple dressers topped with

Hummel figurines, photos of

Graduations, weddings

A great grandson’s first haircut.

 

But they are strangers to one another

Despite the intimate quarters they share

Unable to offer each other companionship or comfort

During this most delicate, protracted season.

 

Poem by Joan Boonin

Image by Jason Pratt

The endless soliloquy of the interior paramour

The endless soliloquy of the interior paramour

This essay was written by Sybil Smith and originally published in the April 2015 issue of The Sun Magazine.

On a cold morning at the end of January I am driving to a small town twenty miles away to visit one of my home-healthcare clients. We’ll call her M. She is eighty-nine, has one daughter who rarely visits, and is fairly healthy aside from a diagnosis of mild senile dementia. Her old New Hampshire farmhouse is at the top of a snowy hill and has drafty doors and uneven floors. M. and I have agreed that I will come at eleven on the days that I help her, but she rises late and is never ready. She can’t seem to grasp that I have a limited amount of time to spend with her.

When I arrive, she is making breakfast: a woefully underdone boiled egg, toast with jam, a cup of tea, and a large hunk of expensive cheese. Her brindled hair is cut short, and her body is slightly bent. Her face is a riot of wrinkles and pouches, and as always she wears a red bathrobe covered with bits of her previous meals. She will not let me wash it.

Because she uses a walker, she is slow in the kitchen, and by the time the tea is hot, her toast is burned, but she seems content as she sits down to eat and read the paper.

I pause near the kitchen table. M. often asks me about my writing, though I’ve told her I don’t write anymore. She also asks about my daughter, a successful singer. Frequently M. will mention that she knew jazz singer Billie Holiday. I think she does this to remind me of her glorious bohemian past, when she lived in New York City. I see the story of Billie Holiday, who died of cirrhosis of the liver, as a cautionary tale about the perils of addiction, but M. sees it only as the trajectory of genius.

After we’ve chatted, I go to M.’s bedroom, where I dispose of the aged contents of the portable commode, pick up the tissues she leaves everywhere, sweep the floor, and empty the wastebaskets. By then she is done eating and ready for me to help her with her bath. She has trouble getting in and out of the tub by herself. Though it’s warm in the house, she always wants me to set up the clunky space heater she keeps in her room. Once I’ve wheeled it into the bathroom, there is barely space for both of us and her walker. To plug the heater in, I have to get down on the floor, which is littered with strings of dental floss.

M. sits down in a rickety chair, and I pull off her bathrobe and threadbare nightgown. Then I work on her stockings, which are as tight as a second skin — to prevent edema in her legs. Finally she steps out of her adult diaper and into the tub.

Recently I began caring for a nine-month-old baby, and I am enamored of his plump legs and silken skin. Even his little man parts are like something carved from ivory. M., on the other hand, is a wreck of dewlaps and burst veins and brown moles. She asks me to wash her back, and I give it a good going over while she sighs with pleasure. Then I move on to her hair, which is surprisingly thick and streaked with black. She says her Italian blood is the reason why her hair isn’t all white. (She is still vain about her appearance and often shows off her small waist by wearing wide, elaborate belts.) She likes for me to massage her scalp, and she has me lather and rinse her hair twice, as the directions on the bottle say. I am amazed that she feels free to make so many requests. I was raised to take what I got and be grateful for it. Yet I must admit there is something charming about the way M. lies in the tub, waving her hands in the water as if she were floating. When she closes her eyes and smiles, I know she will stay in the water for ten minutes or more. This is my chance to get some real cleaning done. I tell her I’ll be back as I head for her bedroom.

“Don’t touch anything sacrosanct!” she calls after me.

M. has been a writer all her life and has manuscripts everywhere. Only a few have ever been published, and she has no agent, but M. is not daunted. As far as she’s concerned, she is a grande dame of letters, every bit as important as May Sarton or Margaret Atwood. On one side of her bed is a bookcase stuffed full of papers and books, and on the floor are several piles of bulging envelopes and magazines. Next to the commode are a stack of incontinence pads and a carved wooden screen hung with ragged nightgowns and scarves. On the other side of the room is a desk covered with loose paper: M.’s writing mixed with ancient newsletters from the senior center and outdated solicitations for support from public radio. There is also a table strewn with reading glasses, hearing aids, face creams, hair clips, pieces of bark, feathers, and stones. (She likes to pick up objects she thinks are pretty on her walks.) In short, the room is a nightmare of disorganization, but M. claims to like it this way and says that if I tidy up, she won’t be able to find anything. When she is feeling irritable, she will imply that my “mania” for order is evidence of my conformist soul, and that my urge for cleanliness is an attempt to “sterilize” her. There is no need to “categorize” her anarchic abundance, she’ll insist; she has been messy all her life.

M. is often busy writing, and many of the scraps of paper in her room are filled with her lacy, crooked script. I’ve read some of them: her thoughts are as jumbled as her possessions. Even so, she refuses to let go of her idea of herself as an artiste. I imagine that this self-image has comforted her all her life: when bad things have happened — her daughter became an addict, her sister died of cancer — she has told herself that all artists suffer, and someday her pain will be part of the story of her greatness.

But the fact is, it’s too late for her to achieve the acclaim she desires. M. is unable to write for any sustained length of time. She grabs a memory and writes about it for twenty minutes or so until her eyes grow tired and she has to rest. Then she puts the paper atop the pile by her bed and dozes, and when she wakes up, she starts to write of another memory on a different piece of paper. Her process is so haphazard as to be pitiable, but she certainly does not see it that way. She sees herself as triumphing over entropy and the certainty of death.

Having been a writer myself, I should admire her refusal to give up. Instead it makes me impatient with her. I believe M. lives in this myth of greatness in which her every habit or quirk is worthy of the autobiography being written in her head. It is the endless soliloquy of the interior paramour. Why do I believe this? Because I used to be that way myself.

I grew up poor. My family did not have a television, but we had plenty of books, and my parents read for both edification and pleasure. Because we couldn’t afford dance or piano lessons, it was clear to me that, if I were going to distinguish myself, it would be through my skill with words. To be a poet, all I needed was a pencil and some paper.

I can still remember my first poem, written in second grade. It went:

Dinosaurs were big and tall.
Tyrannosaurus Rex was the biggest of all.
He ate other dinosaurs, as we can see.
I’m glad I wasn’t there, or he would have eaten me.

I have a dim memory of being invited to share my immortal verse in front of a classroom full of children, and my grandmother sent it to her hometown newspaper in Brandon, Vermont, where it was published. As the fourth child of five, I was often hungry for praise and attention. So it’s no wonder I became hooked. From that moment on, I thought of myself as a writer and dreamed of success and glamour. I received enough encouragement in college to cement the vision, and I even got into the MFA program at Cornell, but I decided to be practical and went to nursing school instead. I earned my degree, traveled, married, and had a child. And through it all I wrote. I published poems and essays here and there but never a book, and none of my publications resulted in the desired acclaim and recognition. By this time, however, writing was a part of my life. It was my therapy, my outlet, my armature — along with alcohol and drugs.

Six years ago I was employed as a nurse at a Veterans Affairs hospital and drinking every day. I often had a shot of vodka first thing in the morning. I was in desperate straits and knew it, but I couldn’t manage to stop for more than three days. In a last-ditch attempt to get sober, I stole some clonazepam — an anti-anxiety medication — from a patient and took a pill one morning, hoping it would calm me enough to alleviate my need for alcohol. It didn’t work. I ended up both drunk and stoned on clonazepam. Impulsively I took about ten more, added some sleeping pills, and curled up in the loft of my shed to wait for death. As I lay there, I realized I didn’t want to die. I wobbled back down the ladder, called my sister, and passed out.

I came to while lying on a stretcher in the emergency room. A big, gloomy state trooper entered holding the pill bottle he had found at my house. It still had the patient’s name on it. He asked me where I’d gotten it, and, too loopy to lie, I answered truthfully. He notified the VA hospital, and I eventually lost my nursing license.

To my amazement, after my life had been blown to smithereens, I was able to get sober. Not right away, of course. I had to learn patience first. Looking back, I don’t know how I got through the anxiety and shame of early recovery. Sometimes the pain was so great it felt physical, and I sat twisting and moaning as if cloven feet were stamping through the chambers of my heart. But as the tiny pieces of my detonated life slowly drifted back to earth, I began working as a home-health aide, helping the elderly and caring for kids on occasion. A peaceful, sane existence began to take shape. The only problem was, I could no longer write. Somehow in sobriety I just didn’t have the juice to pump out pages and judge them as good or bad. Forced to acknowledge that I was a failure as a writer, I learned to live with my dashed dreams. That’s when it occurred to me that I didn’t have to write to prove to the world that I was a worthwhile human being or that all my pain and turmoil had a purpose. I wasn’t special — or, no more so than anyone else. It was time, finally, to grow up.

I sometimes think that M. and I have been brought together for a reason. If I can forgive her delusions, then perhaps I can forgive myself for the many years I spent harboring dreams of literary renown. Some days I fall short of forgiveness. I want to shake M. and tell her to get real, to stop seeing herself as a Writer, as if that were the only thing that could save her. Other days I respect her for continuing to put pen to paper at eighty-nine despite everything. Maybe the world needs us unsuccessful artists to form the compost upon which others sprout and grow to greatness. Or maybe the act of writing itself shifts humanity infinitesimally toward a higher consciousness. It’s like prayer: useful in the moments when we face uncertainty and our own mortality.

When M. is done with her bath, I haul her out of the tepid water, dry her carefully, and squat to put her tight stockings back on. She places her hand on my head to steady herself and asks, “Have you heard of phrenology?” She is always trying to have intellectual conversations with me, as if to let me know that her mind is still active and her interests wide ranging.

“Yes,” I answer. “It’s the ‘science’ of judging someone’s personality by the protuberances on their skull.”

“Your bumps say you should try writing again,” she says.

I laugh.

When I’m ready to leave, M. is propped in bed with a pad of paper. She says she’s going to write about driving to Montreal in winter and sleeping in the car with six other people, their breath coating the inside of the windows with a thick rime, so that it was like being in an igloo.

“That’s a good idea,” I say. I am feeling impatient with her again, but I could never tell her so. That would be mean.

And as I drive home, past the peeling houses and dirty snowbanks and chained-up dogs and blue hills, I try to think of a way to put this grim, bittersweet landscape into words, to fix in time this mixed ache of being human.

This essay was written by Sybil Smith and originally published in the April 2015 issue of The Sun Magazine.

3 poems on the thunder of stroke

3 poems on the thunder of stroke

My poetry unclothes me;

my heart, my soul

unwrapped, uncovered

left for others to read,

interpret, understand.

It opens new doors

Into which others can see,

reflect, and react.

 

Dear God,

Did you have to teach the lesson this way?

With one stroke you caused a thousand storms.

Dear God,

Did you have to teach the lesson this way?

With one stroke you caused a thousand storms.

 

I cannot forget the thunder of the moment and the lightning strikes that followed.

 

 The Fifteenth of November

 

I try hard to forget;

Yet I can still remember

When this nightmare started

On the 15th of November.

It was an evening like any other

When it all began.

I suddenly heard these funny noises

Coming from my man.

 

He was breathing hard and heavy,

So I jumped up just to see.

I saw at once there’s trouble

And surmised what it could be.

 

His eyes were both wide open

And he was in a daze;

I knew we needed help

That only 911 could raise.

 

Thankful that the I-phone

Was resting right nearby.

I told him I was calling

As I looked him in the eye.

 

Help came quite quickly

They knew just what to do.

From me they wanted answers,

A recent medical review.

 

Again, back to the Iphone,

Meds were all listed there,

Along with doctor’s names and numbers

I once had entered with such care.

 

I was going through the motions

I was answering what they asked

They needed to know so much

About his recent past.

 

Ambulance and red lights

Questions all the way

It was my confusion

With them, order all the way.

 

Then there was the hospital

Reality sinking in

Life and death decisions

My mind in such a spin.

 

A major stroke he’d suffered

And quite a state he’s in

After being told the odds

I notified rest of kin.

 

This was the real thing

We would have to wait

Would he last the night now?

Or were we still too late?

 

Minutes turned to hours

As we sat by and waited

Needless to say

By then quite agitated.

 

We listened to the doctors

We heard what they had to say

And then we watched and waited

Through the night and into day.

I keep trying to forget
But always I remember
Each detail of that scary day
The fifteenth of November.

I cannot forget the helplessness I felt as you reminded me the nearness of death to life.

 

Helpless

Terror is despair;

that helpless feeling

seeing loved one down

and your heart reeling.

 

Numbly walking through

the hours of the night;

near to hear his breathing,

crying out his sight.

 

Seeing death’s shadow

standing there beside him;

feeling powerless to challenge,

And praying, ” don’t let death win!”

My heart leaped when he finally opened his eyes, when he blinked in response to the doctor’s questions, and the first wiggle of the toes on his affected foot.  Progress and promise.

 

I Could Only Imagine

I could only imagine

The fear that I would know

Waking from a deep sleep

After such a massive blow.

 

To wake up in a strange place

With nothing ‘round me clear.

Thinking only something happened

Something quite severe.

 

If I could not remember coming there,

And even not from where

I guess it would be confusing.

And fill me full of fear.

 

I would try to get my bearings

And reassess my state

But if I couldn’t move or speak

I guess I’d have to wait.

 

When this happened to my loved one

I worried ‘bout his fate.

With docs and nurses scurrying

I too was in a state.

 

When at last his eyes were open

The doctor turned to him to speak

“You have had a stroke,” he said

“And now you’re very weak.

 

You are in a hospital

And you are getting care

The best is just to rest now

So your body can repair.

 

Your left side has been affected

And your speech has too

I know things are confusing

And difficult for you.

 

You are getting best of care here

It will take time to heal

I will be back tomorrow

To check on how you feel.”

 

My husband did not tell me this

Although now he speaks quite well

He has not shared those feelings

In this new life we dwell.

 

So I could only imagine

The nightmare to which he woke

As I watch him face the challenges

Each day after stroke.

 

God, you taught us all about the damage that storms can cause, and the hard work and effort it takes for the cleanup.   We found dedicated caregivers  and devoted doctors in our path to recovery.  

We learned the comfort of family and the test of friendships.  We could not stand alone.

We found new meaning to those words, “in sickness and in health, ’til death due us part.”

He learned how to ask for help.

I learned how to recognize his needs and respond to his calls.

 

That Stroke Affected Both Of Us

Like a nightmare

That repeats each day,

We both wake up each morning

And try best to wish away.

 

Still locked within his prison

Trying hard to make it work,

I know it’s quite a struggle

This ‘twist of fate,’ a quirk.

 

I watch, as with much effort

He climbs out of the bed.

Truth is that the both of us

Have a very hard day ahead.

 

We can’t turn the clocks back.

We have to make it due.

But, together, we can make it.

This, I know be true.

 

It takes two to argue

And I won’t be that second one.

For we have to work together

And try best to make life fun.

 

Just to walk and talk

Is hard for him just now.

But patiently I watch and listen

And we get by somehow.

 

When I do remind him

Of exercises he should try,

He gets upset and angry

Not wanting me nearby.

 

“I only wish it on you,”

That is what he said.

“Only two weeks, so you could know.”

What was in his head?

 

I thought it cruel,

And told him so

For those words did hurt,

And were a blow.

 

Does he not know that his stroke

Affected both of us that night?

That he alone is not the victim

For both of us it’s a fight?

 

I’m not saying his role is easy.

I’m not running the other way.

Both of us are tired

As we make it through each day.

 

I wouldn’t want his place now,

That place he’s stuck within.

That place he’s wishing me to go,

The places he has been.

 

It will take much effort.

I know he wants to win.

I know he aims to leave that place

He finds himself now in.

 

 

He thinks that he knows all the rules.

It’s his way that he tries.

He’s looking for the door out

Of the world he now occupies.

 

And, for me, it’s ‘one day at a time.’

I help him where I can.

I fit things in for me too.

But make no long-term plan.

 

This stroke affected both of us

Each in its own way

But I know we can make it

And all will be okay.


 

It isn’t easy to change roles; to step up to part of caregiver, to acknowledge this ‘new normal.’   

God, give us the guidance to focus on ‘today’ and not fall prey to the dreams of yesterday.  Help us see through any clouds of despair and find beauty in each color of the rainbow. Teach me ways to give warning to others, so they too may not fall victim to these storms. If only we had been more vigilant to your warnings. 

I cannot forget the thunder of the moment and the lightning strikes that followed.

 


“Human Brain” Cover Image courtesy of ddpavumba at FreeDigitalPhotos.net – Image ID: 100110958

Hospice

Hospice

He built a bridge
For us to cross
A hand to hold
In our time of loss

Footsteps to follow
To a circle of friends
Who’ll surround you with love
Till your heartache ends

Non conforming
Un assuming
Yet inside
Love is blooming

Gathering
Of volunteers
Mend our hearts
Calm our fears

A smile
A hug
The touch of a hand
A chain of love
To the Promised Land

Love is life
Life is giving
Hospice celebrates
The living

by Theresa Loder

A poem about ALZ

A poem about ALZ

Bogged down
Face in a frown
Life’s so uncertain
My heart’s really hurting

The love of my life
The one I call wife
Can no longer see
Or recognize me

Her suitcase is packed
She must go away
To a place that is strange
To be watched night and day

Bogged down
Face in a frown
Life’s so uncertain
My heart’s really hurting

by Theresa Loder

Love has many facets

Love has many facets

Love has many facets
Stroke just shows another face
Spending time together
Finding both your space.

Love has twists and turns
Stroke response is slow
Patience is the answer
If you want life to flow.

Love has no easy answers
Stroke wrestles every move
Knowledge brings understanding
Time and effort will improve.

Love comes with sacrifice
Stroke has played new cards
Readying for reshuffle
Will keep us both from shards.

Love has no measure
Stroke challenges tomorrow
“One day at a time.”
Good motto now to follow.

Love demands team play
Stroke, a challenging opponent.

Happy Valentine’s Day My Love

Sue k Green 2/10/15

A Poem after my Father passed away

A Poem after my Father passed away

Aviary Photo_130719905011461071When I layed there beside you,

Could you feel me there?

My arms were wrapped around you,

And I was stroking your hair.

I was talking about all the good times,

For me they were every single day.

I wanted you to feel love and comfort,

And happy in some way.

I watched your every breath,

And prayed that each one wasn’t your last.

The time we got to share together,

Went by too quick…Too fast.

I wanted you to wake up,

Please Dad…Open your eyes.

Tell me this is a nightmare,

And not our goodbyes.

As your last breath grew closer,

We layed there peacefully together.

My heart continually breaking,

Because I wanted you forever.

Then there it was,

Your final breath of air.

I didn’t want to believe it,

This is so cruel and not fair.

I held your beautiful face,

And prayed you’d breath again.

I wasn’t ready for you to go,

I couldn’t admit that this was the end.

But then I realized that you were now in peace,

And not suffering anymore.

You were beginning the life of an Angel,

And your body would no loner be sore.

I held you close and squeezed you tight,

And tried to say goodbye.

I’ve lost my Dad and my number one best friend,

All my heart could do is cry.

I slowly got up,

I wanted so much to stay.

I leaned over and gave you one more kiss,

It was so hard to walk away.

Dad you are my entire world,

And I miss you so very much.

I wish I could feel your loveable cuddle,

And your soft and gentle touch.

But for now I have to wait,

Until we meet again.

You will always be in my heart and thoughts,

My dear Dad and best friend.

Always and Forever,

Our hearts will always touch.

Always and Forever,

Your lil girl loves you so much

Mom’s caregiver

Mom’s caregiver

Her beauty is not in her hair or her clothes or her face or her figure or her style.

Her hair needs color and cutting and perming and washing and attention. It is mussed.

Her clothes are wrinkled and stained and out dated and un-sized. They need replacing.

Her face is un-made, blemished, wrinkled. Her eyes are dark and oft-times sad. She avoids mirrors.

Her figure is mis-shapen, sagging, bulging with too little or too much weight. Her diet is for coping and sustaining.

Her style is old, a cornucopia of her old clothes, her mom`s old clothes, whatever clothes she can glean at the lowest possible dollar. She has little need for the stylish.

Her beauty is in her being, her heart, her intent, her struggle, her commitment.

Her being is geared toward care-giving, not care-taking. Her eyes look outward, not inward.

Her heart is full with love for her mom, the need to keep her as healthy as possible and as happy as possible and as content and as comfortable as is possible for as long as her mom`s heart can and does beat.

Her intent is to give to her mom all that her mom needs. She will sleep and eat and play and do another day when her mom no longer needs her to sleep and eat and play and do for her.

Her struggle is with the physical and emotional and psychological demands of her role as her mom`s care-giver. Her struggle is with herself and her own ambivalence in wanting to meet her mom`s needs and needing to meet her own wants and being unable to do both.

Her commitment is total. Un-ending. Without limit. At all cost. Unconditional. Her commitment is to her mom. She can`t help it or stop it or change it. Her head knows but her heart rules.

She is who she is. It is oft-times long in coming, and difficult to perceive but she needs to come to understand and accept and appreciate her beauty as it is and for what it is. It is not a beauty reflected in mirrors but a beauty reflected in her mom. It is still a glorious beauty.


Wanda Flythe has served as a caregiver to her ALS stricken mom for the past 9 years. Her four younger siblings provide her with some respite and a year and a half ago she was able to get home nursing help. She is an RN and served as staff nurse and clinical supervisor on the med-surg unit of her local hospital until she left her job to be her mother’s caregiver full-time. Wanda and her husband have two sons and a granddaughter.