Writing Wings For You

Marie Lukasik Wallace ~ # I LIVE Poetry – I'm passionate about life and writing and all things creative and poetic!

Category Archives: Alzheimer’s


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Breadcrumbs

I’d love to know…
Where do Bread Crumbs lead you?

My friend Michael left me this simple word last year, and it led me to this poem about my Daddy…and now he reminds me again. So…tell me…

Writing Wings For You

You left me breadcrumbs

to figure out your life

put togethery our sorrows

make sense of your strife

never knew why door was to stay closed

and locked up so tight

you barely arose

and now you’re on the other side

We are left here wondering

filled with mystery

digging for knowledge of you

knowing no history

couldn’t you have stopped a moment to provide

a trail of crumbs on this side

Wish there was a way to lift the veil

It seems I knock and knock,

but to no avail.

Poets inspire each other.  Sometimes it’s a poem…sometimes it’s a phrase…and sometimes it’s a word  like breadcrumbs.  Curiosity gets me to write.   Where do “breadcrumbs” lead you”.   Thanks to Poetry Channel for the inspiration.

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Hello My Daddy

Good morning my daddy.   On the anniversary of your death, I write this to you in honor of the poem we got to write together.  I remember how excited I was about finding a way we could talk and share more intimately through a mode you loved best.  I couldn’t wait to write more poems with you.  Later that week, you had your stroke.

I love this picture.  Carole calls it the goodbye picture…but today, it’s the Hello My Daddy picture.  Heard your EMS sirens today…so I know you’re awake.  I love you.daddy and me      20160301_072054_resized

I REMEMBER

I remember when you were just a vault…no affection…little talking…always about you.

I remember the first time I asked you if you could do the Father’s Legacy project.  You were apprehensive, but you said, “I could probably do that.”

I remember asking the first question and held my breath for the answer.  It was a simple question like “What is your favorite color?”  You answered two questions that day.

I remember when you would peak over my shoulder to make sure the questions I asked were in the book.  We were building trust.

I remember the first time you were vulnerable and told me your angel story.  This time you held your breath, until I said, “I believe in angels too Daddy.”   I felt your sigh of relief as your story, held in for about sixty years, was believed for the first time.

I remember coming to visit you in the summers as you told me about all the junk in your junkyard and learning why they were your treasures and realizing you were an artist like me.

I remember our last summer together savoring every detail….getting lost with you and loving every minute.  Our last Father’s day, making it special with a sheet for a table cloth and wild sunflowers from your backyard. It was so special that I will always remember it, but you couldn’t remember it the next day.

I remember writing this “I remember poem with you”

and then it all went black…and there was no more remembering.

 

 

 

 

 

 


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Breadcrumbs

You left me breadcrumbs

to figure out your life

put together our sorrows

make sense of your strife

never knew why the door was to stay closed

and locked up so tight

you barely arose

and now you’re on the other side

We are left here wondering

filled with mystery

digging for knowledge of you

knowing no history

couldn’t you have stopped a moment to provide

a trail of crumbs on this side?

Wish there was a way to lift the veil

It seems I knock and knock,

but to no avail.

Poets inspire each other.  Sometimes it’s a poem…sometimes it’s a phrase…and sometimes it’s a word  like breadcrumbs.  Curiosity gets me to write.   Where do “breadcrumbs” lead you?   Thanks to Poetry Channel for the inspiration.


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My Daddy’s Sweet Release

eagle

photo courtesy of Travis Jessop

 

My daddy finally received his sweet release from this world.

And now his journey continues…but without it’s restrictive form.

I was reminded this week by a dear fellow blogger, Michael,

of an old poem I read when I was younger.  My dad might

have even shown it to me.  It’s the perfect poem for my

poet friends.  Thank you for all your support in this difficult

time.  It’s bittersweet.  But am grateful for his peace.

Good friends knowing that both my daddy and I love

words, especially poetry, have offered some beautiful

gold nuggets…I will, if I can, pass them along this week,

or at least weekly.  Thanks for loving his sweet spirit.

A Thousand Winds

Do not stand at my grave and weep.

I am not there. I do not sleep.

I am a thousand winds that blow.

I am the diamond glints on snow.

I am the sunlight on ripened grain.

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry;

I am not there. I did not die. – Mary Elisabeth Frye


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What I’ve Learned About Aging and Dying

red bird 2

I’ve have been honored and blessed to get to spend time with my daddy in his last days.  The community I work with has surrounded me with love and have stepped in to help with my students as I go through this process. It’s something I never thought I wanted to witness.  But my daughter taught  me, that while it’s painful to see a loved one aging and dying, it is also a blessing.  Through watching her go through it, I am reminded that I still get to make memories; I still get to laugh and celebrate many moments.

Remember when your children were little, and you couldn’t wait to clap and cheer as they made their first steps, or ate their first solid food, or spoke for the first time?   You and your spouse argue whether they said “mama” or “daddy” first?  It’s like that.  Each day we celebrate new things that we used to take for granted.

A good day for daddy this week was when he assisted with his getting in and out of bed.  He had the energy, AND, most importantly he had a smile.  He flirts with all the nurses.  They ask for hugs and kisses, and he gives them back.  That’s a celebration because he’s been sleeping so much and been so weak, he has hardly been able to hold his attention on anything.

Other celebrations, being able to feed yourself, being able to dance with your wheelchair to the beat of the music (even if it’s only rocking the chair back and forth. walking up and down the hail by scooting your wheelchair with your feet.

And music…music really is something that is appreciated by the elderly.  They remember.  They do!   Sometimes it’s a finger tap or a toe tap…and sometimes, it’s a tear.  But there’s a moment of remembrance…and those gray eyes twinkle for a moment.   And even you are brought back to a moment in time…for me, it was this summer, getting lost with daddy in the car, when a four hour round trip became an eight hour round trip.  We were headed for the coast…and got lost instead.  I can’t ever remember being lost as so blissful…but it was just me and my daddy time…and it was perfect.  We talked about just every day stuff…and it was good.  Music can do that for you.

We’ve also gotten a chance to go for walks and see and hear the birds here.  I saw my first red bird outside my daddy’s window this past winter.  I remember he scooted his wheelchair with his feet to get a chance to see that bird…and though he couldn’t talk, his lips moved, and he “tweeted” again…which also reminded me of the summer which I wrote about before…they’re beautiful to listen to…their song like no other.  Maybe I just hear things differently.  I know that I see and feel things differently.  I am blessed to make these memories with my daddy now…even though it’s a frail, broken body, ready for rest…there are still moments of beauty in our lives still waiting to be grasped.   What is waiting for you?

 


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For you My Daddy – What I Learn from you as You Leave this Mortal Life

My heart is so small
it’s almost invisible.
How can You place 
such big sorrows in it?
 
“Look,” He answered,
“your eyes are even smaller,
yet they behold the world.”  ~ Rumi ~

As you know, I’ve been writing about my daddy and how I had been developing a relationship with this vaulted man, and I began writing his story.  All the while, making daily phone calls, having to get through not only the emotional vault, but the dreaded disease of Alzheimer’s and its effects of fear of people trying to harm him and steal from him.  I took whatever morsels I could get because I knew a little of my dad was better than what many people get, and it was a legacy of stories for my kids and grandkids.

In October, I sent my dad an excerpt from the book so I could see if I was hitting the mark, capturing his story the way he wanted it to be told.  When I received the phone call, I could hardly wait to get feedback to see if I had hit the mark and know where to take the story next.  But I also braced myself for if he hated it.

“Hello dad, how are you?”  I said holding my breath.  His first words were strong and harsh, “Shame on you.”   My heart sunk.  Wow.  I had not expected that.  ‘What had I said?  What was so wrong? ”     He replied, “You made me cry.”  I heaved a huge sigh of audible relief.  I really wanted to get his story right.  He also told me that I had written it as if I were there.  This is my first time writing ANYONE’S story, so it was scary…even scarier because it was my dad.  He told me he was very proud of me..and that he was looking forward to reading more of my story.  The next day, my dad had a stroke.  He couldn’t talk well at all.  The left side of his face was sagging, so his speech was slurred.    My heart crushed again…because my dad’s story book was closing…and I would no longer have access to it.    Within a few days, my dad could not talk at all.  We think he had several more mini strokes..because it was odd we couldn’t hear some except some basic whispers of basic conversatioins.

So now, three months later, my dad still can’t talk.  It’s so very sad…and very difficult to watch.  He knows what is being said all around him, but he can’t communicate his basic needs, nor can he communicate his feelings.  He can no longer write…and even the simpliest communication boards don’t serve him well.

The silver lining is that each day he loses something, and I am more grateful for what I was able to hold onto the day before…which reminds me to just be as present as possible today.

As I go through this process, a million thoughts are writing across my brain.  I feel them…I try to grasp them…but I am clumsy.  However, I KNOW the power of words..and I KNOW they will heal…and I trust that my dad and I still have a few adventures left in us…I am optimistic.  I am grateful.  I am blessed.

Thank you dear God for the blessings, even in these tragic, heart breaking moments.  Let us both find peace and beauty and yes, still some laughter.  That’s what my daddy does best.

Take care my friends,

love your peeps.

Marie


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Time for a Sweet Release

wpid-20140612_205954.jpg

It is time

For your sweet release

Let go of this physical world

And embrace the spiritual.

 

There we can talk

We can play dominoes

And giggle

We can be whom

We’ve been all along

We won’t be restrained

We won’t feel frustration

It can be just you and me

Having coffee daddy

 

And your voice will be heard

And it will be written

A legacy embraced

And all will be as it should be

 

It is time.

Time for a sweet release

 

Trapped in a steel cage

Of silence

The tongue clumsy

Derelict of its duty

Unable to serve its master

 

 

 

Trapped

Unable to say

What you want

What you need

To be mad out loud

To say how you feel

Or don’t feel about anything

A mind alert without

A voice to support it

Is just that…

A trap…

So unfair

And cruel, and unusual punishment.

Let go.

It is time.

Time for a sweet release


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Daddy – Please Re-Remember

daddy talking with hands

Maybe tomorrow

My daddy

You can somehow

Re-remember

How to form words

And you can tell

Me your stories again.

#fieryverse


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Why You MUST Write – A True Story

I implore you.  If you feel the calling, you MUST write.  There are too many people who depend on you to share the gift you’ve been entrusted with.   It’s vital.

Day before yesterday, I freaked about writing my dad’s story…What qualifies me to write it?  How do I finish it when my dad can’t talk?   Am I good enough?

There were so many questions and feelings of inadequacy.  I reached out to my amazing writer friend, Bridget. She knows how to give a voice to others because she writes people’s stories.  I knew she understood what it was like to reach a point of vagueness, or sheer terror, and feelings of inadequacy…and still she wrote on.  She reminded me that if I didn’t write his story, then my dad truly would not have a voice, especially now that he can’t talk at all.

Today, I went to the nursing home and read my dad another chapter of his story….a story I know that has deep meaning for my daddy.  I read it aloud to him, and he crumbled and cried.  Was I looking  to make him cry?  No, of course not.  But what this revealed to me was the power of hearing the voice of a vaulted man.  This is a man who never showed emotion of any kind.  This is a man who used alcohol to not feel pain…not feel emotion…in an era where men were to be invincible over any kind of vulnerability.  When he cried, he showed me that he had been real and honest with me. When he cried, I knew he had heard his own voice out loud.  When he cried, I knew I had captured the essence of what he was feeling.  He had entrusted me with that part of him that revealed to himself he was human.   I remember earlier this summer my dad had said, “You gave me my life back.”   He needed me to be his voice.  He desperately wanted to be a part of this world and to belong.

Lastly, when I left, I reminded him, “Daddy, you’ve done some great things in your life.  You have left a legacy for your grand children and great grand children.  I am proud of what you have accomplished.  I am proud to be your daughter because you are honest and kind and good.”  He mouthed the words thank you with some sounds, squeezed my hand tight fiercely and kissed me.

Yes, he made mistakes…some really bad mistakes in which he felt the deepest darkest shame. But the darkness had not defined him.  As a writer, I got to reveal that the shame was only part of the story…that alcohol was the antagonist for a short time.  But the real Ernest, the one who overcame the darkness had risen and become a victor in his own story.   His reveal had provided a path for others.

This, my writer friends, is your mission, giving a voice to those whom can not speak or do not know how to speak.  This is how we heal our world, one story at a time.


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Love Your Peeps – A True Story of Alzheimer’s

Many of you know that I’ve been racing against time and Alzheimer’s in getting my dad’s story.  Sadly, my time is coming to an end.  This disease is so cruel.

Two weeks ago, I had sent my daddy two chapters of the book I was writing about him.   I was excited because I had worked really hard on them, and listened carefully to his recordings to get things down just right.

It’s not easy to write about someone who’s feelings are tightly vaulted, and who has often been very critical in my life, AND he’s my father.  I wanted to get it right.   He called me and said, “Shame on you.”  I freaked out wondering what I had said that could cause him to be upset.  Had I gotten details wrong?  Did I send the right story?

Then he continued.  Sheepishly he said, “You made me cry.  You wrote that as if you had been there.”

Inside, my heart was dancing.  He liked it!  I had gotten this most sacred portion of his story right!  Yippee!

Then, he said the ultimate, something I’ve waited for all my life, “I am proud of you.”  Shocked, I gasped and replied, “Thank you daddy.  That means a lot to me.”

A little later he said I was a good writer.   Yes, you can tell me that I really don’t need his approval, and I would agree…but there’s some part of a human that wants this approval.  I was elated and on a high…The next day, I got the call that my dad had a stroke.

The moment was bitter sweet.  I got to embrace the sweetness for such a short while.   And then, I got to find out how unmerciful Alzheimer’s really is.  And, I got to see some of it’s beauty.

I saw my dad as he must have been as a little boy…playful, fun, joyful.   And then I saw it bring him to his knees.

He begged me to bust him out of the hospital…he knew,though no one had said anything to him.  He knew that he would go from rehab to the nursing home.

—

So, I got to celebrate the small things, like dancing to Carole King’s, “I Feel the Earth Move under My Feet,”  even if it was only one hand.  I was grateful for any movement. It was joyous to see the joy in his face and know he could have some happiness in his life.

This past week when I called, he could only mumble undiscernible sounds.  I could hear him try to communicate with me, but he couldn’t.  Through the phone, I felt his disappointment, and it crushed me…we had had our own language, and now we had to learn a new language to communicate.

Throughout my busy week, it was conference week, I sent messages from my heart to my dad.  And when it was my last conference on Thursday, I called again.  I knew he couldn’t talk so I just talked on the phone while he made sounds…attempting to hear changes in tone or rhythm to see if I could understand.  I was determined to find a way.  But I didn’t succeed.  I was grateful he at least knew I was there and could make some sound.

Then yesterday came…I was sure I had devised a way we could communicate and had created a signal he could use to let me know how he was doing…but yesterday, he couldn’t make a sound…Not one audible sound.  The phone just laid there.  I couldn’t even tell by his breathing how he felt.  It’s funny that the little girl in me still wanted a physical connection.  I kept talking in hopes he could still hear me.  I believe he could, and I told him that I would see him in 4 days. It doesn’t feel soon enough because it’s happening so fast.

The moral of the story:  Love your peeps…hold them tight, squeeze them tight, love love love them with all your might…you never know how long you have them.  And be grateful…grateful for their touch, grateful for their smiles and movement, and yes, even their undiscernible sounds…because it’s still of the physical world, and it’s still a connection.

I love you daddy…hang in there until I can see you.

Ree