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The King and The Pawn – A Poem a Families Dementia Journey

Another Beautiful Poem

Submitted By A Community Member

 

The King and The Pawn

  by Carol Brown

The King and The Pawn
The roles have now reversed as you
became the parent and I
became the child.

When you entered my space then
It became the games that people
play, or the games that
you and I played from
day to day.

My mindset became your mindset
for we were now one. My thoughts became your thoughts,
we thought like one.

My footsteps became your footsteps
as you followed me.

My world became your world
however difficult it might be.

When I roamed the house, you roamed
the house walking besides me,
watching my every footstep while protecting me.

When I crawled under the Baby Grand
Piano you followed me, removing me
from a dangerous place where I thought
we could play the game of hide and seek.

 

At night time, sleep was only a fallacy,

for this was the best time to roam the house
while you were asleep.

Climbing 13 stairs to get to
my “palace” on the second
floor, and locking myself
In the bedroom closet where I could
call for help through the closet door.

Returning down stairs, to a house
that was pitch black,
I would continue my mission to
steal popsicles from the refrigerator for my delight.

When I attempted to flee the house
against your advice, you changed the
locks on the doors and hid my
shoes to stop my flight.

When I was hospitalized and placed in
restraint, you advised medical staff
Of what I would do, but they
failed to listen and found me
down the hall, in a patient’s
room, hiding in the bathroom shower stall.

From 1994 until 2008 and
for fourteen years, with our brains
boggled and lives modified
to an arduous way of life,
My footsteps became
your footsteps as we roamed the
house together and played games my way .

Yes, I did it my way and you did
what I’d say.

” Doggone your time” is what I would say, for
having Alzhemier’s is a game,
a Chess Game that you,
(The Pawn)
and I
(The King)
played from day to day.

 

 Author Carol Brown,

Retired Probation Officer and Caretaker of my Father for 14 years

 

Thank you Carol for sharing your journey with us.

Lori La Bey, Founder of Alzheimer’s Speaks

 

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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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Some Hows and Whys To Keep Living & Loving Someone with Dementia

Alzheimer’s Speaks Radio 

Talks with Steve Bodansky

On Loving Someone with Alzheimer’s

Tuesday, August 7th, 2018 at 2pm EST, 1pm CST, 12pm MST, 11am PST

and 7pm London

Listen By Clicking Below 

Lori La Bey, host of Alzheimer’s Speaks Radio has an open discussion about love and dementia with author, Steve Bodansky. His latest book is titled, “Love and Alzheimer’s.” which is the story about Steve and his wife Vera who is diagnosed with Alzheimer’s.  Steve has a master’s degree in Molecular biology and a Doctorate in Sensuality. He has been a sensuality and relationship coach for the past thirty plus years.  If you enjoy poetry you will also find some of Steve’s poems he has written to Vera.

Steve discusses the very intimate topic about love, pleasure and how things change but can still be the same.  Although most people talk of the down sides of dementia, Steve also shares some of the benefits as well.

You can contact Steve Bodansky

Email:  stevebodansky@gmail.com


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Poem Inspired By Disease – Matter of Fact

Matter of Fact

By Ron Louie, MD

Her face was matter of fact when she heard the pronouncement. 

The neuropsychologist was her colleague; he remained professional, but slipped in some sympathy with the data, which I could not appreciate.

She didn’t display a mask of depression, or Parkinson disease.

Her face remained pliable, not pleased, but neither terribly pained, no exhibition of perplexity, or petulance, or surprise, a pensive look, retaining its complex grace, a quiet reserve, a solemn alertness, the beauty of humane consciousness, with no further expectations.

In her own practice, she had encountered early Alzheimer disease first hand:

that wonderful younger woman, whose baby she had delivered, working in accounting until the numbers became exotic, then alien; she had told me about that patient, with shock, sadness, and resignation.

But I didn’t understand this. I wouldn’t. It was the guy, his tests, the setting.

At home, I made her try to draw a clock, count backward, recite words, and copy intersecting rectangles.  She tried, this good doctor who had always bested me in calculus, organic chemistry and marriage.  She wasn’t angry.

So how could I be mad? She was setting the example, as she had done her whole life, her whole career, without pessimism or regret, or fanfare, just ready to go on, even though her words and steps might mutate, unpredictably, ever aware of the possible endpoints, with each of us now grappling this present moment, trying to recognize its identity.

Dedicated to IRJ, MD; suggested by Meryl Comer

Neurology® 2018;90:139. doi:10.1212/WNL.0000000000004841

Listen above to Dr. Louie read this poem. 

 

 

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Dementia Care- Lying to Grandpa

 Lying to Grandpa

Chubby Puppies and a

Time That Stands Still

By Jenny Krainski 

          Going  back to my grandfathers house was more difficult than I had  ever imagined.  My grandfather, my fathers father, had spent a year in the SoldiersHome before he died.  The house just sat still, like a snapshot of days past.  Clean clothes lay folded on his bed, photographs decorated the walls, knickknacks sprinkled with dust lined the shelves and bureaus.  I realized then that, for that year in the nursing home, grandpa was a minimalist.  He took barely any belongings with him and he was more content than hed been in years.  After my grandmother died, a year before he went to the Home, he slept all day (when the dog wasnt calling the shots) and fed that dog a bit too much.  That tiny pooch had my grandfather wrapped around its furry, little paw.  Grandpa developed dementia about five years before he died.  He forgot if he gave the dog a treat, so the dog would ask for treats all day long.  He forgot if he took the dog for a walk, so the dog took about fifty walks a day.  Whenever we would visit Grandpa, he would be outside with the dog on a leash in the driveway.  He loved that dog–that chubby, wise, manipulative dog.

          When Grandma died, it raised some questions for the family that we never thought wed have to ask ourselves.  How do we tell Grandpa?  Do we tell Grandpa?  My grandmother had been at a nursing home for about six months before she died because she couldnt get around well.   My aunt decided that Grandpa needed to be told immediately, so she went to go see him and explained that his wife of sixty years had died.  He cried all night, so she stayed over, as she should.  In the morning, my grandfather asked my aunt where his wife was.  My aunt then referred my grandpa to the sign that she had made when Grandma first entered the nursing home:  “Mom is at the nursing home.  She is having trouble walking.”  When my aunt saw that he was again relying on this sign, instead of recalling the previous nights grief, she decided to leave the sign hanging.  I often wonder how she felt at that moment when she realized that Grandpa didnt remember anything that occurred the previous night:  the sobbing, the devastation.

          When Grandpa transferred to the SoldiersHome, the sign made its way into the room that he shared with another resident.  Staff and visitors gently directed him to this handwritten, overused sign when he asked where his wife was.  I cant help but wonder if this practice followed the moral code that I had been living by . . . we were all lying to Grandpa . . . we were lying to him  countless times each day when he inquired about his wife.  But is it ethical to make a man relive the death of his wife over and over and over again?  He was so happy when he relocated to the SoldiersHome . . . would it be right to make him sob uncontrollably each time he asked, “Wheres my wife?  Wheres Red?”

          My grandfather lived it up at the Home; he danced and sang for the nurses each day.  He seemed to truly appreciate the atmosphere and the people around him there.  When we went to say our final goodbyes to Grandpa, one of the nurses had his face on her cellphone.  He loved life there . . . he loved it there with his whole family, friends, and staff lying to him each day . . . 

Swimming in Memories

           I remember being at Grandma’s funeral.  I looked around for my grandfather, but he was not there.  After a few inquiries, I learned that he wasnt coming; no one was picking him up; no one dared to tell him that grandma was dead . . . again.  I felt frustrated by this, but then I pictured him sobbing over her casket, and then going out into the parking lot only to wonder what he was doing at a funeral home in the first place.

          I am here now at grandpas house.  It smells of mothballs, like it always did.  The moths never had a chance if they dared enter this house.  I was driving with my teenage  son the other day and in the middle of thick traffic when suddenly, somehow the nostalgic smell of mothballs made its way through the vents in my car.  My son commented that it smelled like old people.  Its funny how one smell can create different visions for different people!   

          I look around at the old mint green tile on the walls in the kitchen.  Somehow that tile didnt age, there were no signs of scratches; the tiles were actually shiny and looked new, which seemed quite out-of-place.  My eyes fell upon the old linoleum floors–green and yellow stripes  The yellow stripes always reminded me of the yellow lines in a road, as they were the same color and nearly the same thickness.  Nothing here has changed since I was a kid, seemingly many decades ago.  I snap a few pictures, in awe, at how time had truly stood still.  No one has lived here in over a year and I can see Grandpa sitting at the table and Grandma bustling around the kitchen.  It was as if they wanted the clock to cease, as well.  They kept the same photographs and pictures hanging, the same knickknacks displayed . . . I remember Christmases here.  My grandmother would deck out this place like the North Pole.  I often wondered where they stored so many decorations when Christmas was done.  Perhaps in a huge warehouse somewhere!  My grandpa smoked a pipe and developed a well-fed belly over the years, so it was like he belonged in the Christmas village that Grandma created.  

          If there was any unrest between the adults at the holiday gatherings, I dont believe that any of the kids felt the tension or even noticed.  I don’t remember receiving any gifts, besides pajamas; I must have, but I just recall laughing and playing with my brother and my cousins.  Why do I only remember pajamas? I think most times clothes were a boring present, unless they were ultra soft or had a cool picture.  I do recall the best pajama present ever:  my two female cousins and I all received the coolest Holly Hobby pajamas.  Our parents lined us up by height–me at the tallest end, the oldest girl–and snapped a picture, which I still treasure.  We must have been at the grandparents house late that night, as I just cant fathom stopping our playtime to put on pajamas for a picture unless we were tired.  Unless of course, we were bribed with treats . . . 

          I only had desserts at my grandparents house.   Seriously, there were never traditional desserts in my house.  For example, when I was a child, I recall my mom giving my brother and I a bowl of plain vanilla yogurt, the kind that tastes like sour, sour cream.  She always called items like that dessert and we ate it slowly this day, probably sick of plain yogurt at this point.  This day, however, my mother told us with an excited voice that there was a prize at the bottom.  We hungrily ate and found our prize:  peaches!  Amazingly, we were overjoyed with our prize.     

          There was only one time that the sugary treats that my grandparents provided was an issue.  My parents went away on a ski vacation and my grandmother stayed at our home to babysit.  Of course, she brought treats galore!  If peaches were a special treat to me, you can guess how many donuts, cakes, cookies, and cupcakes made their way into my tiny, five-year-old, little body!  We never even kept cereal with sugar in the house, so you can guess the shock to my body that this granular invasion was. Funny:  I don’t remember my parents going away for a long time after that . . . it must have not been too much fun for them to come home to small children with mountainous stomach issues.  

          I truly cannot envision an uncomfortable moment in this house, except after Grandpa was diagnosed and we all felt the effects of the diagnosis, including him–mostly him. I remember the pain on his face when he called me by my cousins name and I corrected him; he looked so embarrassed to not have recalled his granddaughters name, which he had spoken so many times.  It must have been so difficult for him to know that something was happening with his memories that he didn’t quite understand.

          I never knew what it was like to answer a question and then answer it at five minute intervals for the next hour or two. I learned how to change Grandpas “looping” thoughts after a while:  getting him to sing a song or dance with me, hiding an object that he kept discussing over and over, or preparing a list of things to talk about ahead of time.  I did not learn these tricks right away.  They were tricks–I was playing tricks like a rotten child . . . to save myself and others from hearing the same question again and again and again . . .  It must have been so hard for Grandpa.

 The Take Aways 

           Here at Grandpas house the time truly stands still.  There are pots and pans in the cupboards, soap in the shower, food without freezer-burn in the icebox, and magazines with current faces on them by the television set.  My dad encourages me to take whatever I want as keepsakes.  Who knows what will happen to all of this stuff if someone does not treasure it. There was a lot of memories here.  “Can I keep the house?” I ask.  He laughs.  My cousin plans to buy the house.  This is good news, as my cousin appreciates family and holidays as much as our grandparents did.

          After walking about and reminiscing for a while, I start poking around more in-depth.  Do I want an artifact that I will put in the back of my closet that I may not unearth until years from now?  No, I want to be severely practical–thats my nature.  If I dont use an item in my home, after a short time it easily makes its way to the Salvation Army, consignment, or eBay.  Oh, the rooms Ive emptied on eBay!  I ponder a short story by Alice Walker called “Everyday Use”.  An interpretation of this story is whether family artifacts should be simply displayed or used in daily life, such as a blanket.  I now decide that Im an everyday-use-kind-of-person.

          I begin to wonder why Im here, at my grandparents house.  Why did I want to come here?   I think I need closure for my son, for myself, for this empty house–as if somehow, I could bring this memorable house of sixty years to a galactic halt, bring it to rest in one afternoon!   Who did I think I was anyway?  The memories would be alive here even after my cousin gutted and remodeled the place.   

          My son got to really know his great-grandparents through the objects in this house, on this day.  He was thrilled by the items that his great-grandfather treasured for all of these years.  The items told a story in a way.  I know that Grandpa quit smoking countless years ago–he saved many, many cigar boxes.  Perhaps as a reminder of how good it felt to sit back and have a smoke?  He then filled these cigar boxes with practical trinkets, such as colorful coin rolling papers and instruction manuals to his treasured cameras.  He saved the license plates to all of my fathers cars, from his first car to his most recent motorcycle.  My son was drawn to these perhaps for the same reasons that his great-grandfather kept them:  family and remembrance.  The license plates now hang on my sons wall; the cigar boxes are neatly stacked on my sons shelf with his own treasures inside.

 

          I am thrilled to find Tupperware sets from the 1970s that look brand new.  I am overjoyed when my brother calls me up to the attic to show me the trunk of antique dishtowels that look as though theyve never been used.  I study them and decide they will be used and appreciated. 

          I now use my Tupperware, dishtowels, and shelves from Grandpas workshop.  They remind me of my grandparents, their house, and their practicality and simple way of living.  Grandma probably collected these towels because she thought that shed use them one day, and never did.  She treated her Tupperware with kid gloves probably because she never went anywhere to scratch them up!      Grandpas shelves were severely beat up because he was a tinkerer.  He loved his garage and his workshop.  Each shelf and corner had tiny jars labeled with the contents:  bolts,  screws, rubberbands, and so on. I took many, careful pictures of my grandpas labeling because I knew that time wouldnt stand still forever.   Grandpas organization reminded me of me  because of my insane love of organizing, which is strange because I was an organizational mess all through school. 

          My husband and son have been tossing around the idea of purchasing me a top-of-the-line label maker for many years now.  I guess I never realized that Grandpa and I were so alike, needing to know where everything was at all times. Ive gotten out of bed in the middle of the night because I recalled that I hadnt put something important back where it was supposed to go.  Tidy, tidy, everything has its place (I think thats a line from Mary Poppins).  I wonder if Grandpa ever got up in the middle of the night to locate an object of such importance that this object might get up and walk away if it was not put back before morning.  Then another odd thought crosses my mind:  it was fortunate that Grandpa put everything in neat, predictable containers.  When his memory started to get foggy, he was able to easily locate what he needed.  It was almost as if he knew what would happen to him in the future.  Although, if thats true, then perhaps I should worry about my own fate.   I know that cant be accurate–its absurd–but I dwell on it for a few moments anyway.   

          I never looked around here like this after Grandma died because Grandma was not truly dead until Grandpa passed away.  We all kept her alive for what felt like a lifetime of two years.  

          I went to teach my English class today, about a week after the visit to my grandparentshouse.  We had the read “Everday Use” a couple of weeks ago.  I brought some of my dish towels and lay them out and told the students that I had been thinking about Alice Walker.  I told them the story of going to my grandparentshouse and my students were captivated. I believe that at that moment I felt truly invested in the literature that I was introducing.  I felt as though, on some level, that I was living a tiny thread of the authors words for a moment.

          I thought about how much stuff that my grandparents collected over the years, even though they didnt appear to use half of it anymore.  I don’t think that Grandpa and Grandpa were everyday-use-kind-of-people.   I went home that day and emptied out a closet.  Of course, most of what was in the closet went to the Salvation Army.  I now feel better about the the way things happened with my grandparents.  Therapeutic writing perhaps?

          I think of my grandparents and their home often and am hopeful that the positive recollections that I have will not fade anytime soon.  Packing my lunch today, I fill a Tupperware from my Grandparents house. As I leave for the day, I eye the very new-looking antique towel hung upon my stove and smile.  My joyful expression then fades as I return to wondering about the lies that we all told to Grandpa.  When is it okay to be so deceitful?  How many times can you watch a person grieve for the very first time?  It would have been torture to make him relive that moment over and over again because he would not recall it. But we would.  Was it more for us, not to see that pain and anguish, perhaps because we were also reliving the sadness we also felt?  I also began to wonder how many times I had been lied to because the intention was that it was for my own good.  Could it be that it was really for the benefit of someone else because it was easier than telling the truth?  It’s quite painful being an adult.  Grandpa, I don’t know how you did it for so long. 

What Are Your Thoughts?

Thank you Jenny for sharing your family with us.  There are many twists and turns, as we make decisions while caring for someone with dementia.  What are your thoughts about not telling the truth to someone with dementia, to avoid them reliving a painful situation?

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Dementia: Two Different Perspectives

Dementia:

Two Different Perspectives

These poems work in response to each other, one being from the perspective of my grandmother who died from complications with Alzheimer’s in 2011 and one being from my perspective seeing her at the nursing home.

“(Un)Familiar”

by Allison Budaj 

What is this place I cannot seem to leave?

Exit near, the flight I cannot achieve.

When did I get here? From where did I come?

Hard to recall in this ceaseless doldrums.

Who are these confined people all around?

Their fate like mine to this place ever bound.

Who is this girl by me in this bleak place?

A very calming, familiar sweet face.

Who is this child holding my hand in hers?

Seems so kind but her name I am unsure.

I do not know this girl they call my kin.

Her gaze fixed as tears glide around her chin.

Why do I not have a thought of her name?

May never know but love her all the same.

 

“(Un)Recognizable”

by Allison Budaj

Not my Nina, the woman before me,

Head hanging low without much joy or glee.

Not my Nina, laughing in days gone by,

Body broke from memory gone awry.

A hollow shell of the person I knew,

Her gaunt eyes still a radiating hue.

She looks up at me with a puzzled stare,

Her mind trying to guess me standing there.

As if she knows, her scowl curls to a smile,

Eyes burst into tears, been such a long while.

With this beaming grin years melt from her face,

How could we leave you in such a bleak place?

Mom says it’s best, she is beyond our care,

Turning to leave with heartbreak, I can’t bear.

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Join the A-List

An Important message from our friend Meryl Comer:

Only twice in my twenty plus years as an Alzheimer’s caregiver has a doctor ever asked whether I was doing okay. Yet my husband would have never made the clinic appointment on time if I had not gotten up extra early to bathe, dress, feed, manage his resistance and drive him there. Now here’s a chance to be heard!

Researchers from the Mayo Clinic want to learn what matters most to you when you go to the doctor with your loved one. They need volunteers for an online focus group who are current or former caregivers for a loved one with dementia.

Click here to learn more about this important Mayo Clinic caregiver study asking what matters to you when you go to the doctor with a loved one.

Study participants will be asked to join an online focus group and answer several questions over a week and a half posted by the moderator. Participants can choose to remain anonymous. Their goal is to help healthcare providers better support and communicate with caregivers by learning:

  • How health care providers can best help caregivers provide optimal care to loved ones while maintaining their own health.
  • How involved caregivers want to be their loved ones’ healthcare.
  • What the ideal “care team” looks like.

Please click here for more information about this important Mayo Clinic caregiver study.

Your opinions are critical to improving the experience for all caregivers when they accompany loved ones to doctor’s appointments. Let’s not miss this opportunity to make doctors tune into what matters to us.

Meryl Comer, A-List Team Member & 20-year Alzheimer’s care partner

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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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