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Posts Tagged ‘poem’

My Heartbreaking Journey with Alzheimer’s – A Caregiver’s Lament

Celebrate World’s Alzheimer’s Month – Share Your Story

Another heartfelt prose from John Sweeney one of our community members. John’s honesty will touch anyone who reads his words below. The heartache and love that holds us together when dementia hits someone we love.

My Heartbreaking Journey with Alzheimer’s – A Caregiver’s Lament

At my 80th birthday party, with the family gathering in fall of 2009,

Family noticed Virginia’s memory problem they couldn’t define,

Our daughters had made observations that they brought to my attention,

Concluded that Mom had memory issues, they were reticent to mention,

Things for which I was very unaware, because of my closeness to her,

I had missed many of the little indicators that would frequently occur,

But the family had seen the signs, to them they were in plain view,

After that I started to watch, sadly as I came to see them too,

Signs of forgetfulness seem to display more often than before,

Observations, painful to me, seem to be recurring more and more,

One painful example, she urgently called to my attention one day,

Her husband would be at the airport soon, we needed to be underway,

She needed to go to the bathroom while at a family affair,

“That young gal here is going to take me and show me where”,

It was a granddaughter that she loved so much in days of yore,

So very painfully sad that my love didn’t know her anymore,

Our daughters had come to visit with us at our apartment one day,

She called me aside whispering to me, sadly I heard her say,

“Who are those two ladies we were talking with out there?”

Fear shook through my frame as I became very much aware,

Slowly realizing I was losing the woman I had loved over 60 years,

This terrible disease, Alzheimer’s, was filling me with many fears,

It seemed now was time to explore with specialist in neurology,

At what point in this heartbreaking path now do we seem to be,

The Doctor set up an appointment with Neuro technicians for a brain scan,

From there he would have what was needed for a treatment plan,

With an aviator’s style head gear with contacts and wires everywhere,

It looked like a swim cap, the kind that Esther Williams used to wear,

The diagnosis stung when the description of the problem was read,

And I was shockingly informed with news that I had come to dread,

Alzheimer’s was the diagnosis, more news that hurt to the core,

For I had read many of the outcomes of this terrible disease before,

My mind raced, thoughts buzzed violently in my aged head,

As I contemplated what sorrow, pain and anxieties lay ahead,

As time passed, terrible anxieties burdened the love of my life,

It pained me greatly to see the stress in her, my beloved wife,

“We need to call my parents or grandmother so they hear from me!”

Her parents passed in the 1940s and her grandmother in 1953,

She would panic, searching, the “baby” was nowhere in sight,

A horrible feeling, sobbing kept awake in the middle of the night,

It soon became apparent, caring for her was beyond my ability,

Painfully searching, at this point what could the answer be,

After counsel with all the family, we all soon became aware,

The best solution for her well being was a room in Memory Care,

As I filled out the application, with my eyes filled with tears,

I realized we would be separated for the first time in 70 years,

She moved to memory care in the month of January 2019,

More evidence of cognitive regression was gradually seen,

One of the most painful experiences not noticed before,

That most of the time, she doesn’t know who I am anymore,

But with everything we have lost, and how our lives are stressed,

I remember fondly my 70 years with her, I have been blessed.

By John Sweeney – John lives in an Independent Living apartment in Cherrywood Pointe of Roseville, MN.   His wife Virginia is in Memory Care in the same facility.

Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites since 2011.

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I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!

Carla Koehl, Director of Community RelationsArtis Senior Living of Lexington

 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge WA

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Poem – Before You Left

“I want to thank Stephanie Turner for the beautiful poem she wrote about her Father who lived with dementia and her experience as she walked along side him. Poetry is such a powerful way to communicate. I hope you enjoy the depths of this poem as much as I did.”

Lori La Bey, founder of Alzheimer’s Speaks

Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites.

All shows on Alzheimer’s Speaks Radio are accessible to listen to at anytime to once they go live – Enjoy.

Those Living with Dementia Talk Openly About

Holiday Stress Triggers on Dementia Chats

Today Lori La Bey, founder of Alzheimer’s Speaks facilitates a conversation with the true experts on dementia, those living with a diagnosis. Our Topic is Holiday Stress Triggers for those Living with Dementia In this video you will hear those living with dementia speak articulately as they talk about holiday stress triggers, how they adapt to changing situations and environments as well as giving care partners ideas to make the holidays run smooth.

Book Your Next Event, Staff/Management or Family Training for 2020 & 2021 with Lori La Bey today! Consulting and Mentoring also Available.

See what Others have to say about Lori La Bey

I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!

Carla Koehl, Director of Community RelationsArtis Senior Living of Lexington

 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge WA

For More Testimonial

                                            Diana Pierce and Lori La Bey

Start the New Year off on the Right Foor for a Family Dealing with Dementia! 

Check out this book helping families deal with a dementia diagnosis. 

You can get a special discount too!

The book is called Parental Dementia:   A Guide through all the Difficult Questions by Keith Galas has spent more than 20 years helping families work through all of the questions that keep popping up through the dementia journey. The book even has some great worksheets to help keep your thoughts and needs organized.

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What a Great Holiday Gift for a Family Dealing with Dementia!

Juggling Dementia Care &

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The Silent Killer – Poem by Gwen Barnes

I dreamt about my mum today

a cruel disease took her away

it crept up upon her from behind

and slowly crushed synapses in her mind

I watched it happen

I couldn’t fight

I was powerless, as she was

in it’s might

I sometimes hear the latest news

the scientists have made

the next breakthrough

but this killer is still at large

it’s appetite is on turbocharge

its killing millions in it’s wake

it must be stopped

for humanity’s sake

So all I can do is hope and pray

that it doesn’t get me one day

there’s evidence to suggest it will

by then there may well be a pill

to cure this dreaded predator of the brain

to let old age have it’s longest reign

to enjoy this life, to be fit and well

until it’s time to bid my last farewell.

By Gwen Barnes

(in loving memory of my mum who passed away with Alzheimer’s in 2016)

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See what LeadingAge has to say about Lori La Bey

 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge WA

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Powerful Poem Titled “They”

Once again, one of our community members writes a beautiful poem which points out just how much our words matter. Thank you Bob Savage!

A note from Bob Savage who is living with dementia –

Inspiration came from a recent national conference workshop that I attended where staff from a dementia care facility described what they are doing to improve communication with the people living in their facility. They used “THEY” at least 15 times when referring to the people living in their facility during their presentation. Each time they used the word “THEY” my stomach would cringe.

 THEY

By Bob Savage

 Who are these people who after one word we call them THEY

Did they have any choice as to why we call them THEY

Sometimes just one word (DEMENTIA) is why their THEY

Is a person any different after Dementia Diagnosed as THEY

We still love, hate, think, enjoy, cry, be depressed after THEY

We still love our family, friends, have enemies after THEY

We still love movies, parties, vacations, traveling after THEY

We still have emotional upsets, anger, frustrations after THEY

We do not like the loss of independence after THEY

We do not like the loss of social contact after THEY

We do not like people deciding and speaking for us after THEY

We do not like being a burden to those we love after THEY

We like to continue to speak for ourselves after our THEY

We like to be involved in all our decisions after our THEY

We like to set up new social contacts others after our THEY

We like to be accepted in our communities after our THEY

© of Bob Savage Living with Dementia 2018

If you would like to submit your poetry about dementia and caregiving make sure to include: The title of the piece Your by-line including your name as the author of the piece and any background or contact information you would like to share. Contact us  

See Other Poems Here

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 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development      LeadingAge WA

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Poem Regarding Dementia: Time Lost

Time Lost

Another Beautiful Poem

Submitted By A Community Member

Time Lost

By Sandy Cannon

A crestfallen look beholds her face

The life of her mind now wrapped up in lace

Bright smiles once captured are now fleeting and few

Her indifference grows stronger, as her prayers fill the pew

Words once spoken fall silent from her lips

Her captor steals her thoughts and robs her of bliss

A world yet to travel with opportunities so vast

Is held hostage by her mind and are now dreams of the past

Loved ones are devoted and keep vigil for her care

Unable to arrest this disease that so dares

Dares to be bold, dares to be brash

And forces us to mourn our loss before the ash

We take solace in knowing that her fear will surrender

To a place deep inside, that she will no longer remember

Let’s find a cure….

My name is Sandy Cannon and I live in St. Louis, MO.  My mother passed away in December, 2017, from dementia.  I am a volunteer for AFTD (The Association for Frontotemporal Degeneration).  I also work with the Alzheimer’s Association in St. Louis.  

Thank you  Sandy for sharing you poem with all of us!

Lori La Bey, Founder of Alzheimer’s Speaks

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 “Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge Washington

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I’m Sorry – A Poem That Will Touch Your Heart

Another Beautiful Poem

Submitted By A Community Member

 

I’m Sorry

by Ciaara Abke

 

I see you as my granny

You see me as a stranger

My eyes turn to you with love

Your eyes turn to me in confusion

I’ve known you all my life

And you’ve only known me for some

I say your name

But you can’t recall mine

My love for you is endless

But yours is imprisoned

I’m sorry

Thank you so much for sharing your poem with us Ciaara. 

I think everyone can feel your pain and your love through your words.

Lori La Bey, Founder of Alzheimer’s Speaks


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Pat Sylvia, Director of Education & Member Development LeadingAge Washington

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A Poem Shares a Heartfelt Look at a Visit with Her Mother

 A Visit

By Cheryl Kempner

 

It’s just the beginning…

Three years in….

She knows my name.

She opens the door but does not lock it behind her.

She tries to find a place for the new picture I gave her.

She said she’d move things later.

I said let’s do it now.

It’s perfect she says.

She asks if we want a drink.

We say later.

We try to chat.. there’s little conversation.

She asks if we want a drink.

We say later.

She asks if we want a drink.

We say yes.

She tries to find the glasses.

She opens the cabinets.

One after another.

She finds the right one.

She gives me a glass.

She gets me water.

Her gait is off.

She walks slowly.

She’s young… only 75.

We sit at the table.

What’s new I ask.

Nothing she says.

Where’s your coloring.

I don’t know. I cleaned up.

The family room is spotless.

I like things organized she says.

Are you playing cards? Painting?

Playing tomorrow..good I say.

I don’t know if it’s true…

Do you want to see the pictures from our cruise I say.

Yes she says.

Let’s slide through the pictures on my phone.. are you bored yet?

No they are wonderful.

Did you have a good time.

Great I said.

How are you feeling.

She says I’m good.

You lost a lot of weight I said.

Yes she says.

What do u eat?

Eggs with… with…

I said tomatoes, cheese, spinach…

Give me a minute..

I say lox? I found it hidden in the side of the refrigerator.

She says yes, Nova.

She offers more snacks.

She takes chocolate.

Are you allowed to have it?

She says I can do what I want.

We sit again.

We look at more pictures .

Do you remember when we went to Venice?

She smiles.

Did you buy anything she asks.

Not much I said.

Some souvenirs.. I had an amazing time though.

She just holds her head in her hands and looks at my pictures. I know it’s enough.

She tells me they just came back from a trip… there was no trip.

She tells me dad left at 3:00 for cards.

I spoke with him at 530.

They were having dinner.

I know it’s enough.

She wants to change and watch tv.

I say maybe we will do this again next Thursday.

She says sure if she has no plans.

I say ok, lock the door.

We kiss goodbye.

Thank you for coming.

Lock the door.

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A CAREGIVER’S VALENTINE

candy_hearts          

A CAREGIVER’S VALENTINE

-Karen Brenner, Author of You Say Goodbye and We Say Hello”  

                                              

We were impossibly young and so beautiful

When we met and fell in love.

You were the cool guy from the big city,

I was the shy small town girl.

 

I bring you photographs of those days long ago.

You look at me and smile and ask me who those people are.

I take your hand.

It is warm and strong in mine.

 

You don’t remember but you know that we belong together.

I tell you the stories of those two young people.

You listen intently and study their faces.

And look into my face with wonder in your eyes.

 

I have come to understand that it doesn’t matter

that you no longer remember who we were then.

It only matters that we can sit and hold hands

While I tell you stories of those two young lovers:

You and Me

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Poem – 56 Years

56 Years

 By Suzanne Chait-Magenheim, LCSW

(about my mother who died in 2010 written 10 days after my father’s funeral, 1995)

 

Lost in his big armchair

Like a little lost waif

Clutching his photo.

Forlorn and lost

Is that him at the door?

56 years.

Together.

She waits.

Is this a cruel joke?

Suddenly, an empty house

She heard the rabbi say

His name at the funeral

Hey, that’s Daddy’s name

She whispered to her daughter

That’s my husband’s name

She thought

Wait til I tell him.

Be quiet, it’s Daddy’s funeral,

Her daughter whispered back.

Oh, he’s dead.  I forgot.

She waits.

 

Doesn’t remember the hospital.

6 weeks they say….

I was with him…they say

I’m confused.  Memory’s not so good

anymore.

He died.  Daddy’s dead.

When’s he coming home?

56 years.

She waits.

 

The sweetest man who ever lived.

A jewel of a man, the rabbi said.

He’s all I know.

He’s the only one I ever liked,

I tell my daughter.

We had a wonderful love life,

I tell her.

But you dated a lot, her daughter said.

Oh, that didn’t mean anything.

Oh, you yelled at him all the time

Oh, that didn’t mean anything.

We were together.

That’s all that mattered.

56 years.

 

Where’s Daddy?

He died.

When?

10 days ago

That’s all?

She waits.

 

I don’t remember his being ill.

Oh, he sat in his chair and didn’t go out anymore

But we were happy just to be together.

We were supposed to grow old together.

He did, my daughter says.

No, no, it’s not possible.

He’ll come in the door.

56 years.

She waits.

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MY PRAYER, BY ANGELA MCCRIMMON

Here is a prayer from one of our followers.  Thank you for sharing Angela.

MY PRAYER

BY ANGELA MCCRIMMON

There are some prayers you never think you will pray,

You struggle to find the right words to say,

You search in your heart, you search in your soul,

They tell me in Him to step out and be bold.

 

They tell me He’ll listen if I ever speak,

He will give me hope when things look so bleak,

He will reassure me that things are okay,

He will bring me back when I walk away.

 

I tell myself “Well, I’ll give it a go,”

I hear him remind me I already know,

He’s shown me so many times in the past,

He’ll answer my prayer if only I’d ask….

 

“Dear Lord, he is weary, his body in pain,

His memory fails him again and again,

He looks so scared, so lost and alone,

Won’t you please come and take him back home.

Lord I am asking please won’t you be,

Close to him and set his heart free,

His body so frail it’s hard to believe,

He holds onto my hand when I try to leave.

Once so strong and now is so frail,

His mind so sharp, now his memory fails,

I’m there but I wonder does he even know,

He looks so sad when I turn to go.

I don’t know how much he does understand,

The only comfort I can give is my hand,

Locked in his world, words he can’t speak,

Once so strong and now is so weak.

I pray you will comfort him day after day,

When he’s lost somehow you will shown him the way,

I can see him drift, his mind disappear,

When he’s scared I pray that you’ll draw him near.

Each time I see him, I know in my heart,

That time’s running out, I knew from the start,

I knew that this illness would take him from me,

So soon, so quick, it’s hard to believe.

Lord I am asking that you will protect,

For a moment I plead “please don’t take him yet”

One look I can see that he doesn’t have long,

I wonder if he knows that something is wrong?

These questions could haunt me so I know I must,

Remind myself in you I must trust,

I pray that he’s sitting right there by your throne,

Dear Lord I pray, please come take him home.”

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