This blog will be a place to post poetry written by people living with Alzheimer's disease. We will focus on poetry that is created as part of the Alzheimer's Poetry Project. We will post information and news about dementia. We hope this blog is of use to the family members who have a loved one with dementia.

Friday, December 31, 2010

Maps and Wings


Our father died yesterday at 2am. His obituary is below. On Christmas day when he was in the hospital I asked him if he wanted me to read him a poem and he asked for the one about "Okies."

I read it to him and he grinned and said "pretty good." Below is Maps and Wings written for my father. I will be writing more about him and his and my mother's connection to the Alzheimer's Poetry Project over the next few days. Gary Mex Glazner

Maps and Wings

The road looks the same
no matter where you are going.

Route 66 was my father’s road
and his father’s road.

Model A with the dust bowl
in the rear view mirror
and California in the headlights.

From being men to being Okies.
The vulgarities of newcomers.
A drowsy distant hope.

Route 66 was their plowshare.
They dug into the rank soil.
Held the miles in rusted fingers.

Maps folded like wings.
A banquet of motion.
Beckoning us now
with its broken fragments.

Let us piece the road together.
This is the way they went
and we shall follow them as we are able.

Billy Mex Glazner was born in Blair, Oklahoma on July 31st, 1930. His childhood sweetheart and wife of 47 years, Frankie Lou Glazner preceded him in death.

As a boy he worked picking cotton and experienced the Great Depression and the Dust Bowl. Like the characters described in John Steinbeck’s novel, “The Grapes of Wrath,” his family traveled from Oklahoma to California in search of work, where his father Mex found employment as an electrician on the Irvine Ranch. Billy’s middle name comes from the state of New Mexico where his grandfather worked on the railroad near Santa Fe. He was so enchanted by the land; he named his son after the state, who then passed it to his son and on to me as a family name. 

Everyone who knew Billy Mex remarked on his sense of humor and storytelling ability. Perhaps those talents had their origins in the fact his parents not only showed creativity with their unusual choice of a middle name, but in the fact that the given name on his birth certificate is Billy, not William.

He served in the Korean War as an artillery gunner. In 1957, he joined the U.S. Border Patrol in Sierra Blanca, Texas. He was promoted and transferred to work as an investigator in the Immigration and Naturalization Service (INS) in New York City in 1960. His 23-year career in law enforcement culminated in San Francisco as the Assistant Deputy Director, Investigations, INS in 1980. 

Upon his retirement in 1980 from the INS, he supported his wife in the purchase of Novato Florist and they worked together until their retirement in 1991. It takes a man secure in his masculinity to go from carrying a snub-nose, 38-caliber pistol in a shoulder holster and supervising INS agents to running a flower shop.

Recently he developed a passion for bowling and belonged to the Sons in Retirement Bowling League. 
His 1948, Blair Broncos high school yearbook lists his favorite food as: corn bread, molasses, and sassafras tea; his subject as Frankie; his song as “Cigarettes, Whiskey, and Wild, Wild, Women,” and his pastime as sleeping. His sister Ann reported that their mother Minnie was scandalized upon hearing these favorites
read aloud at his high school graduation and said, "He never drank sassafras tea."

He succumbed to cancer of the liver on December 30th, 2001. Billy Mex is survived by: his wife Ann; sisters, Sue and Ann; sons, Gary Mex, Kevin and Lon; their wives Margaret, Alma, and Jennifer, and grandchildren Jennifer, Emily, Frank, Beckett and Ruby. A memorial service will be held at the Presbyterian Chapel, 710 Wilson Ave. Novato, California, Sunday Jan 2nd, 2011 at 2pm.

Saturday, December 18, 2010

Marilyn

The poem Marilyn was created at the culminating event at the Orlando Art Musuem. A silde of the Andy Warhol print, which is in the collection of the museum was projected on the screen behind the stage and used as inspiration for the poem.




Marilyn

Where did you go Joe DiMaggio?
She was always growing.
JFK loved her.
When she died we all died.
We all loved her.
She had a crisp beauty.
She reminded us of spring.
She was a pioneer.
She was an original.
People looked at her beauty, but not her intellect.
She had an old, well-traveled soul.
She sang, “Happy birthday, Mr. President.”
She had everything, but was never happy.
She was full of light and shadow.
She overdosed on life. 

Here is the group creating the poem. 
Photos by Melixa Carbonell

Sunday, December 12, 2010

APP YouTube Channel


Check out the video at the Alzheimer's Poetry Project's new YouTube Channel:





This video was shot at Sterling Healthcare in Media, PA. The recognition of Sterling Healthcare’s unique programming include an award for creating a science club and their pet therapy dog, a spunky little Boston Terrier named Gilligan won a Bronze Medal for his therapy work from the American Kennel Club ACE Awards. It's an amazing well-run place!

More info at:

Friday, December 3, 2010

Alzheimer's Foundation of America Telethon

The Alzheimer's Foundation of America has been a great supporter of the APP, including helping to fund our Spanish Anthology. Tomorrow they hold their first Annual Telethon. For details about their telethon, which airs including show times, visit: www.alzfdn.org

 

Thursday, November 25, 2010

Amanda Deutch on the Alzheimer's Poetry Project



Amanda Deutch is one of the APP's New York Poets, she speaks about her work with the APP and her father's Alzheimer's. This video is from a reading for the APP at the Community Bookstore in Brooklyn on Nov. 10th, 2010

Born and raised in New York City, Amanda Deutch is a poet who traveled the world only to return to the borough in which both of her parents were born. Amanda Deutch's work has been published widely in such magazines as Barrow Street, EOAGH, 6x6, Listenlight, Upstairs at Duroc and Full Metal Poem. She was the recipient of a Footpaths to Creativity residency in the Azores, Portugal and is a member of the Dusie Kollektiv and Rewords (www.rewords.blogspot.com). Her writing has been nominated for a Pushcart Prize and she has been invited to read in venues throughout the United States, Europe and North Africa. Deutch is the Founder and Creative Director of Parachute: The Coney Island Performance Festival in Coney Island as well as an arts organizer and educator. A former Counselor and Case Manager for at-risk youth in Portland, Oregon, she has designed and led poetry workshops for runaways, homeless teenagers, and adult cancer survivors. Whether hitting the pavement or inking the pen, Deutch dedicates herself to revealing the poetry everywhere.

Thursday, November 11, 2010

Translating Edwin Honig: A Poet’s Alzheimer’s


Union Docs has a wonderful piece on Alan Berliner's film "Translating Edwin Honig: A Poet’s Alzheimer’s." Great clips from the film and insight into the filmmaker and his relationship to his cousin, friend and former mentor — the poet, translator, critic, and teacher, Edwin Honig.

Check it out at http://www.uniondocs.org/translating-alan-berliner/

One of the most poignant scenes from the film is when Alan asks Edwin what the “one thing” he would say to millions of people watching him in a film, “Remember how to forget.” is Edwin's answer.

Honig was an early translator of Lorca and Pessoa.

You may read some of Honig's poems at Jacket Magazine

Here are the opening lines from "To Infinite Eternity"

Death is closer
to infinite eternity
than life is

and each life closer
to each least breath
than the blankness of
infinite eternity itself

More on Honig's work at the Poetry Foundation website.

Wednesday, October 27, 2010

Frances Kakugawa


Great article on Frances Kakugawa's book, "Breaking the Silence: A Caregiver’s Voice," by R. K. Singh on his blog at:

http://rksinghpoet.blogspot.com/2010/09/breaking-silence-tribute-to-sufferers.html

Singh writes, "...Kakugawa and her poet-colleagues’ varied experiences with a broad human perspective, engaging both mind and heart. The caregivers seek to share their compassionate spirit with a sense of gratitude to all those who help the victims of Alzheimer’s disease negotiate their mentally vacant existence."

More on Kakugawa, the book and her work here: http://www.francesk.org/homepage.html#top

Monday, October 11, 2010

J.W. Marshall


I love Esther Altshul Helfgott's blog "Witnessing Alzheimer's: A Caregiver's View. Today she has a wonderful piece on J.W. Marshall's poetry. Marshall and Christine Deavel co-own Open Books: A Poem Emporium in Seattle. One of the best poetry bookstores in the U.S. Hosting all those readings must of worn off on him because the book is excellent.

To read Esther's blog click here http://blog.seattlepi.com/witnessingalzheimers/archives/220382.asp

More on Open Books: A Poem Emporium

Wednesday, October 6, 2010

Where Lightening Strikes


Delighted to get this new poem from one of our summer interns, Elton Ferdinand III. Elton was wonderful to work with and came to us from our friends at Urban Word NYC. He is on scholarship at the University of Madison in Wisconsin and is studying biology as well as pursuing poetry. I love the line, "...There is a small synapse of a chance..." Here is a photo of Elton performing.

Where Lightening Strikes
By: Elton “The ‘third’ Man” Ferdinand

The body is a lightening rod
that only needs the skin. Jolts
happen when we touch too
hard. We will experience
what it means to be live wire.

Beneath us, there are storm
clouds that send thunder
across the space in our sky.
The quiet after it’s over is
not best for us. In the silence,
we lose our clouds.

The sky will clear. We will
start to remember nothing
and forget all we used to
remember. The body uses
electricity to communicate.
When the clouds are gone,
it is hard to reach the space
in the sky. As the world turns
inside us, we will not be able
to hold a memory together.

In a room full of lightening
bolts, our words rain. We try
to make them turbine enough
to spin—speak—remember.
In the rain, lightening can
travel further than it knows.

The body uses lightening
rod communication—stores
it in the ground of its bones.
The ground cannot conduct
electricity unless it’s wet.
There is a small synapse
of a chance that lightening
will convulse from the rod
back into our sky. We will
thunder storm again. Their
memories will play tag again.
If only for that moment.

Thursday, September 23, 2010

Stuffing

The German tour to present the findings from our pilot project, sponsored by the U.S. Embassy in Berlin is going well. Giving a talk in Bonn tonight at an educational conference to leading German teachers. Here is a poem one of the participants from the Tubingen event sent to me on the subject of caring for her mother.

Stuffing

Kim Schröder

Rubbing old bread into a glass bowl
you sneak up on me, indiscernibly, as
doughy pellets rise and I glimpse your freckly face.
You feign comprehension
as I subsume your ‘Queen of the Sunday Roast’ role
as if it was normal
you can’t remember how it’s done.

Chopping velvety mushrooms, finely, so finely,
I glance again at the memory of the visit
having to direct your every move: are you going to dress now?
Would you like a shower? You’d got stuck in the bath.

Cutting red onions, releasing their tartness
you hobble-pace to the sitting room
and back, unsure of its realm and your ranking.
I smile because within your confusion the core
of a joke between us remains, un-laughed at yet.

Milling black pepper over the ingredients
I add lemon juice, the freshest sage, generous garlic,
glugs of olive oil, mix and pat into a Pyrex
presenting it to you for inspection, hoping on a resurrection:
you taught me all I know – don’t go.

Tuesday, September 21, 2010

The Eagle


Inspired by Alfred Lord Tennyson

This summer I have had the pleasure of meeting the folks from "Arts by the People," a New Jersey based group that provide a range of arts programs especially focused on youth and seniors, in Northern New Jersey and New York City. I have been training their President Paul Rabinowitz and their Creative Writing Specialist Ellen Papazian in using poetry with elders. Here is a poem from the Poetry Group at Lester Senior Housing, in Whippany, New Jersey from
September 3, 2010.

The Eagle

The eagle is as majestic as harmony.
I was at the top of a mountain.
I’m a world traveler.
It was in Scandinavia.
I had to look up,
and there it was,
unbelievably beautiful.

So different in size than anything else we can ever see,
looking up at the sky at the top of the mountain
and seeing that magnificent bird.

If I was an eagle,
I would fly very high,
and I would see a celebration
with red, green, orange, and white fireworks.
A display of fireworks.

If I was an eagle,
I would fly high above the universe,
so I could observe the people—the world above,
the world beyond—so I could take in the majesty of it all.

If I was an eagle,
I’d fly to the top of the mountain.
I’d see the universe: Here I am, Universe!
Bring back my sweetheart to me!

If I was an eagle—at my stage of the game,
it’s a little late—I would like to fly to the heavens,
so I can see the true beauty of our world.

If I were an eagle,
I’d fly up to the highest mountain that I can see,
so that I’d look down and see that there are really two worlds:
one down there and one up here.

I’m not a poet. I just do practical things.
I don’t know many eagles.
I take care of my practical things—
living, eating, sleeping, dreaming, clothing.

If I was an eagle,
I’d fly to the highest mountain,
look down to pick out the good and the bad.

When I was in Seattle,
I used to see eagles in the tall pine trees.
They have their little baby birds.
They fly back with the food for the baby eagles,
and they put it in the nest.

If I was an eagle,
I’d fly above the clouds
and find all my friends.

If I was an eagle,
I would look for another eagle that I could befriend,
and together we could fly and then defend.

I would fly to different parts of the world
and see how people live and help them to be happy.
When they see me with my large wings,
they would feel beautiful.

And that’s why we’re all eagle scouts!

Wednesday, September 8, 2010

All You Need is Love...


The poem below was created by the residents from assisted living and individuals from the Day Program at Alzheimer's Resource Center of Connecticut. We held a record five training and poetry sessions there on Thursday, September 2nd. That totaled up to 6 plus hours of poetry in one day!

The staff was welcoming and motivated. The facility is one of the best run and organized among the many places I have had the honor of working at the past 6 years.

The training was organized by Erica DeFrancesco, MS, OTR/L their Director of Community Services. Here is what she wrote the following day, "I cannot tell you how much your coming meant to our organization – to our residents, staff, families, and to me. It was a joy to watch the ease with which you shared your gift and inspired others to learn."

From the moment I was greeted at 9:30 in the morning, until I left that evening a little before 8pm, I was impressed by how enthusiastic everyone was. Michael Smith their Executive Director sets the tone by empowering the staff. Do you know how when you go into a restaurant and the owner greets you and you can feel their pride? Everyone I met that day had pride of ownership and that pride transfers into how they treat the residents and how they treat each other.

We talk about patient centered care, I think the folks at the Alzheimer's Resource Center of Connecticut, have figured out that how you get there is by starting with caring about each other. The word that most comes to mind when I think of that day is- Respect. YES! Sing it now...R.E.S.P.E.C.T!

Shouts out also to Kelly Smith Papa RN, MSN their Director of Education, Research and Dementia Care Consulting, who shared a lovely story about her grandfather writing poetry. Click hear to read about the professional training and consulting they offer.

Below is one of the poems we wrote that day.

Love

Yes, I care for love, but to a point!

Love sounds like……that’s kind of hard. Is this poem going to be G or R?

Love smells like….I can’t tell you that…I’ve never smelled anything.

It smells like chocolate, but it depends upon what kind of chocolate you are buying.

Love tastes… white.

My bride....She is pure, for a little while.

Love is wonderful. It is two people turning into one, walking together, singing together, and we’re overdoing it.

Love to me is very special, and you’re blessed if you find a mate. I was married for 60 years, and I have 8 children.

Love is not something you can ridicule or something you can play with. It’s precious.

Love has never changed.

Love can feel… relaxing, or tense, or secure.

Love tastes like… bananas!

Love smells white, like a rose.

Love sounds like… happiness, cheerful and peaceful, like laughter.

Love looks light. You put your arms around your husband. It looks light, and happy, and content.

It looks FLAMING red!

Wednesday, August 18, 2010

"I wandered lonely as a cloud": Lyric Selfhood and Alzheimer's



Susan Schultz has written a wonderful review of Sparking Memories: The Alzheimer's Poetry Project Anthology on her Tinfish Editor's Blog.

Schultz takes a paper by, Steven Sabat and Rom Harre, "The Construction and Deconstruction of Self in Alzheimer's Disease," as her starting place to look at the "I" in romantic poetry and how that relates to self of the person living with dementia.

I find Schultz' take on the poems we use in the APP fascinating and I am thankful to have this new way to look at the work we are doing through the concept of Deconstruction.

And then my heart with pleasure fills,
And dances with the daffodils.

And then my heart with pleasure fills,
And dances with the daffodils.

And then my heart with pleasure fills,
And dances with the daffodils.

Saturday, August 14, 2010

A Report from the Field


We are thankful and proud to have had Helen Wilson as one of our summer interns.
She is studying with Professor Philip Davis at the University of Liverpool. Davis is famous for among other accomplishments his work on the Shakespeared-Brain. An amazing study that shows the brain's response to the use of the grammatical technique of the "functional shift."

We believe the principle explored in Davis' research can be extrapolated to other poetic techniques such as metaphor, simile, and image and accounts in part for the powerful response we see in people living with Alzheimer's disease to poetry. That is the anecdotal observations we see as increased facial expression, smiling, and verbal social engagement are tied to the increase in synaptic activity shown when the brain encounters this creative and unusual use of language.


Here is Helen's account of participating in the Alzheimer's Poetry Project this summer.


Everyday buses lurch, the subway rattles on its tracks and cars jam against one another in the throbbing heat of the summer commute. New York is undeniably a place movement, desirable for some, unavoidable for others. There are those, however, for which the heavy pace of the day to day passes them by entirely; office chairs are replaced with recliners, computer screens with that of the television and the heavy noise that otherwise rims this city with a quiet broken perhaps only by the assertions of an overhead speaker.

A dreary life? No, not necessarily. One different to that generally recognized as ‘New York’? Certainly. The inhabitants of Amber Court Residential Home are such as this. With a population of elderly residents at differing stages of the condition Alzheimer’s, this is not a group I anticipate as one of lively interaction and enthusiastic engagement. This is set to change.

When asked to read Shakespeare’s Sonnet 18 to the group my first reaction is one of apprehension, reading poetry aloud being something I have never felt entirely comfortable with; partly the remains of shyer younger years and partly a reluctance to share that which sits closest to my heart with a public audience. A previously fumbled reading has left me a little more apprehensive than normal and today I am especially glad of Gary’s optimistic and energetic introductions.

We begin the session and the apparent simplicity of the first poem’s first line ‘Pan es Pan’ belies its power in waking up this audience; previously bent heads begin to rise, formally stilled mouths move along in time and there really is no better way to understand this ditcho than by the smiles that start to appear around the room on its conclusion. In a later session, one resident, apparently disengaged from the entire activity, is roused from his silence with careful questioning, to the point where, reluctant to be held back from participation any longer, he takes the sheet to read the poem aloud himself. We later learn that such an outcome was beyond the imaginings of those caring for this man.

The irrepressible spirit of a woman in her eighties is communicated when she spontaneously delivers a saucy alternative to The Purple Cow", a move that has much of the room laughing with her by the end. The mood transforms from one of at best sedate, at worst dull, to one of play and mischief, I guess what one might call ‘fun’; not something instantly associated with elderly care.

Once the interest of the group is sparked, and the focus maintained, I am introduced and take my place in front of this now receptive crowd. On beginning to read I realize that what I am keenest to communicate is not the clarity of the words as such, but what they strive to find; the feeling, or truth, beneath. It is in looking into the faces of those so different to mine that the line ‘And thy eternal summer shall not fade’ takes on a new resonance; the context of age and decline becomes an asset rather than a hindrance, as that celebrated in the vital insistence of these words – the eternality of shared human experience that goes beyond the individual human life – begins to voice itself afresh.

It is in this moment that I cannot help but realize that in keeping poetry ‘to myself’, in surreptitious private readings has been, for so many years, to miss the point entirely, as it is only in sharing the contents of one heart that we can hope to move others. This was not perhaps what I expected to learn from this internship, thinking myself there to bring the residents out from the shell of their condition, rather than to move out from underneath my own. A better and more valuable lesson would have been hard to come by; as those sleeping minds reawakened to Shakespeare’s distilled and eternal truth, so did mine in a mutual understanding that overcame illness, cultural difference and age. The capacity for literature to bring us all back to the real nature of shared life, so easily forgotten in traffic jams or breakfast queues, is something that the Alzheimer’s Poetry Project is proving impossible to deny.

SONNET 18

Shall I compare thee to a summer's day?
Thou art more lovely and more temperate:
Rough winds do shake the darling buds of May,
And summer's lease hath all too short a date:
Sometime too hot the eye of heaven shines,
And often is his gold complexion dimm'd;
And every fair from fair sometime declines,
By chance or nature's changing course untrimm'd;
But thy eternal summer shall not fade
Nor lose possession of that fair thou owest;
Nor shall Death brag thou wander'st in his shade,
When in eternal lines to time thou growest:
So long as men can breathe or eyes can see,
So long lives this and this gives life to thee.

Ever wonder what Shakespeare really looked like? Check out this article from last March on the Cobbe painting of Shakespeare.

Thursday, July 29, 2010

Tree Poem


This poem was created by the Mindmovers, early stage group at N.E.W. Curative Rehabilitation in Green Bay, Wisconsin. Executive Director, Noreen Greatens and Program Director, Bob Kralapp of Legacies Arts Project Inc., were receiving training as part of our affiliate program.

The poem was created by asking simple questions about trees. What is your favorite? What a person might do in a tree? What animals might you find there? The answers are in order given with care taken to get the language as close to the words the person says when answering and with only light editing.

The discussion and answers grew more animated as the creation of the poem developed. Bob did a great job of getting the text down and led an exciting performance of the poem upon completion. Especially spirited was the section on the gopher and fermentation!



TREES


My favorite tree is an oak tree.
If it’s in your yard you just climb it
and you look back down and think -
I’ve got to climb all the way back down.
Then there’s a flying squirrel -
Rocky J. Squirrel.
They eat nuts and bury them.
And they jump.
It feels great.
There’s an element of confidence.
It feels like you’re moving on.

Or an apple tree.
An orchard of them.
Full of apples,
juicy and green.
The Granny Smith.
Then there’s Johnny Appleseed,
From Appleton, Wisconsin,
Famous for planting apple seeds.

The crabapple tree
has beautiful pink blossoms.
It’s in the spring.
It’s almost like snow
when the blossoms fall.
And you jump.
They sure taste juicy.
A little sour but awfully sweet.
Crabapples fall on the ground
and they ferment
and gophers eat them
and they get drunk.

That was the best kind of tree to climb -
the crabapple.
You hang from your knees
and you look and look.

Tuesday, July 20, 2010

Enrich your Caregiving Journey



Enrich your Caregiving Journey by Margery Pabst and Rita Goldhammer starts with a poem by Pabst that captures the caregiving experience:

Limbs
Arms and Legs
Tense, constricted,
Unable to bend except
Bowing to relentless days
Brimming over.

Feeling Apart
just keeping up.

Full disclosure, I have gotten to know Pabst through the work for the APP she is funding in Florida through the Pabst Charitable Foundation.

For me this means she has not only written a creative and useful book, full of practical tips on how to become a strong caregiver, she is also committing the resources of her foundation to helping caregivers and advance creative solutions as well.

The book by Pabst and Goldhammer is on one side practical, nuts and bolts advice and tips- like understanding that the values you bring to the table may not be the values of other family members also involved in helping with caregiving for your loved one.

For instance one person may be very private, while the other person is outgoing and wants to be around friends. This could effect who to invite to visit the person and this simple understanding and framing it as a value helps navigate and understand the family dynamics.

On the creative side of the book is that all the tips and advice are framed in stories of fictional families, this literary concept allows Pabst and Goldhammer to maximize the life situations the caregivers find themselves in, but like all good writing it draws you in and I found myself wanting to know what would happen next to the family, how they would handle the next hurdle. This narrative drives the book and humanizes the hands-on advice.

The lessons in the book and the knowledge they impart are hard won. The authors draw on their experience as caregivers and create a book they wish they had access to during their own experiences and that heart infuses the book at every level.

In the introduction Lisa Edstrom, the Associate Director of the University of Minnesota, Center on Aging writes, "This book is an important guide and tool that can't be read to soon. Caregivers most often find themselves suddenly immersed in an unfamiliar world of decisions and stress.

By preparing yourself for your role, you can grow in self awareness and experience both person well-being and effectiveness while enhancing your relationships and the well-being of your loved one."

You can find out more about the book at

http://www.pivotalcrossings.com/

One last note the book won the 2010 Caregiver Friendly Award from Today's Caregiver.

Thursday, July 15, 2010

APP in the News


Wonderful article in today's WORCESTER Telegram by Jacqueline Reis
(Photo credit- T&G Staff Photos / CHRISTINE PETERSON)

TACKLING ALZHEIMER'S WITH LONG-AGO LESSONS

This poetry session was part of training the APP is doing with Skip Shea and Anna Chinappi and the Center for Peaceful Living.

Thursday, July 8, 2010

APP on NPR


Here is a link to a National Public Radio show on the APP produced by Paul Ingles

"In New Mexico, poet Gary Mex Glazner has found that poetry can sometimes have a beneficial effect for people struggling with Alzheimer's disease. Reporter Paul Ingles accompanied Glazner on a recent visit to the Sierra Vista Assisted Living Center in Santa Fe."

Here are comments from Ellen Sue Stern

"I just want to say that
after my mom died
that I wished I had known
during the horrid years of her decline...

we'd be there, watching her eat her napkin,
Maureen screaming, total chaos, mom begging to leave
we'd walk out in total despair

after my mom died
I read writing by individuals
in early stages of dementia
what an eye opener.

they expressed their reality as
nothing like what we were projecting on them, i.e.
we suffered over leaving them
and how horrible it was there

but for them, guess what?
the power of now

they were actually living in the present moment
none of which negates the horror-but
as a family member,

it would have been nice
to know that by the time I was out the door,
she had long forgotten the pain and chaos
that we assumed she was feeling
because its what we were feeling

wow!

I've made a point of sharing
the info with far too many friends
whose parents
are now in some stage
of dementia.

You can read more about her at:
www.ellensuestern.com

She sent them by Facebook as I was preparing
the info about the NPR show and gave
me permission to publish them here.
Hope they are useful!

Tuesday, July 6, 2010

APP in the News


Here is a link to an article by Kate Santichon the APP in the Orlando Sentinel

"Once-somber faces light up with recognition, heads nod, hands clap, listeners giggle and laugh. A palpable energy and connection builds from a room of strangers often lost in their own thoughts."

Photo Credit Jacob Langston

Friday, May 28, 2010

Lion's Face New Opera by Elena Langer and Glyn Maxwell


Photo Credit: Alastair Muir

The Guardian has a wonderful account by poet Glyn Maxwell on: "How do you write an opera about dementia?"

He writes, "The more I learned, the better the poems became. The Institute of Psychiatry in south London's Denmark Hill opened its doors to Elena and me. We talked to scientists and researchers, saw x-rays and brain scans. We met care-givers, psychologists, music and drama therapists. We saw good care homes where we'd still never want to go, and poor care homes that we tried not to think too much about."



Click here for the full article- www.guardian.co.uk

Here is the website for Lion's Face

Friday, May 21, 2010

More on Lee Chan-dong's film, "Poetry."


UPDATE- LEE CHANG-DONG'S POETRY WINS THE CANNES AWARD FOR BEST SCREENPLAY!

Here is a clip from Maggie Lee's review of the film in the Hollywood Reporter,

"Bottom Line: A disturbingly ambivalent view on art's relation to life and death.

CANNES -- Rhyming couplets, rather than religion, is the opium of an old lady beset by Alzheimer's and a family crisis in Lee Chan-dong's companion piece to "Secret Sunshine." While both films feature maternal figures whose lives are derailed by tragedies they cannot help, "Poetry's" tone and emotions are so painfully muted, its style so elliptical and Lee's exploration of the function of art in a morally vacuous society so ambivalent that it makes for extremely difficult and challenging viewing."

read the full review here http://www.hollywoodreporter.com/hr/film-reviews/poetry-film-review-1004092975.story

Poetry is now being touted as a possible winner of the Golden Palm award!
Michael Phillips of the Chicago Tribune calls the film one of his favorites and says, "The South Korean writer-director's protagonist is exceptionally rich: a 60ish grandmother coping with financial difficulties and the early stages of Alzheimer's."

More reviews on the film: Financial Times

Chicago Tribune

Huffington Poet

ABC News

Wednesday, May 19, 2010

My Mother's Keeper


Nancy Gerber writes, "When my mother told me she'd had three children, at first I thought, 'There goes the Alzheimer's again.' But then I remembered: my father had badly wanted three children, and in between my birth and my brother's, there had been a miscarriage. A lost child.

As my mother's ability to relate to the world around her became more and more fragmented, I would look to these gleanings as a way to form some kind of connection between us to replace what was rapidly slipping away. Even so, I was not really comforted by what I learned from the delusions, for I wanted all of my mother, not just what was left of her memory."

Gerber's story My Mother's Keeper, is a thoughtfully written, powerful account of her experience of the early stages of her mother's dementia.

I recommend this book to anyone seeking to cope with the acknowledgment that a loved one has Alzheimer's or related dementia. Along with Gerber's prose are photographs by Joan and John Digby that highlight the story. You may find out more about the book by writing:

The Feral Press
P.O. Box 358
Oyster Bay, New York, 11771

or

www.pp-pub.com

Nancy Gerber is a mother, daughter, and writer with a doctorate in English from Rutgers University. She is the author of two books: Portrait of the Mother-Artist: Class and Creativity in Contemporary American Fiction (Lexington, 2003) and Losing a Life: A Daughter's Memoir of Caregiving (Hamilton, 2005). Currently she is enrolled in an analytic training program at the Academy of Clinical and Applied Psychoanalysis in Livingston, New Jersey.

Sunday, May 9, 2010

Alzheimer's Poetry Project in Philadelphia


Held our third training session in Philadelphia last week and one of the poets Sojourner Ahebee, wrote about the experience in her blog.

"Participating in the Alzheimer's Poetry Project allowed me to discover another way of encouraging my grandmother, who has Alzheimer's, to be creative. She loves this very long poem by Langston Hughes called The Negro Mother. I am so impressed by how much of it she has remembered and she beams when she recites it."

Here is a link to the full post-

http://trumpetworld.blogspot.com/

It was great working the Philadelphia poets including her mother!
Happy Mother's Day!

Tuesday, April 27, 2010

INDIAN MOTORCYCLE


INDIAN MOTORCYCLE
Jean C. Howard

When you sell
the Indian
I am away
in a hotel in Denver.
The news shoots
like electro shocks
through the mouths
of our family

Because when you sell
the Indian
despite the plead
my husband
made of you
before we left

Rumors of it running
through
as if we were losing
not just you
but the past of you
the boy running skinny
on the west side of Salt Lake

The you of you
that cried in boy terror
as great schoolmates
trailed your way

The slip of you
being bloodied at your
porch step
almost making it in

The almost of you
always
a dad that picks
you up and throws
you back out
to be man
to be a man
to be a man.

It is not the machine
we are losing
old and graced
still kicks up
in the garage

But the grace of you
sliding lightly across
the gym floor
arms adjusted
like tuned pistons
punching light
into your foe.

It is the blonde head
of you smashing waves
into the sky

The nuts and bolts
of you
greased and snarling
glistening gears
that ache for more.

It is the Zen of you
tight and tuned
and loose with liquor
kissing fear
right on its smacker

The girl of you
sewn tight in man-skin
mirrored by daughters
a fighting wife

The mother of you
curled like a brooch pin
within your gullet
her dirty housedress
her eyes of water
her breath still tinted
with hints of rose

When you sell
the Indian
you sell the promise
that you’ll go on

That thoughts won’t slip
by, silver trout
darting lightning
behind words

That you won’t wander
through the house
searching searching
all night long

Losing the “it”
of things,
of names and places
of checks your wrote.

When you sell the Indian
that which is precious
spokes and leather
aging chrome
still kicks up
deep in the garage

You forget that night.
With me, the daughter
frantically
trying to get it back.

Jean Howard was one of the original Slam poets in Chicago. She now lives in Salt Lake City and this poem reflects her experience with her father's Alzheimer's disease.
More about Jean on her website here http://www.jeanhoward.com/home.htm

Saturday, April 17, 2010

"Poetry," by Lee Chang-dong in Cannes Film Festival

The excerpt below on Lee Chang-dong new film is from HanCinema, Click to read the full report. This trailer is in Korean but it looks like an interesting film.



"Korean dramatic film "Poetry" is set to be released in France on August 25, according to the film's production company Uni-korea on Friday.

Uni-Korea announced through a press release that "Poetry", helmed by renowned director Lee Chang-dong, will be distributed by French distribution company Diaphana.

The movie, starring veteran actress Yoon Jung-hee, is about an elderly woman who takes poetry classes and writes her own poems while battling Alzheimer's disease.

"Poetry" has been chosen to compete at this year's prestigious Cannes Film Festival."

Sunday, April 11, 2010

Sweetest at the End

A wonderful essay by Elinor Lipman in today's New York Times' Modern Love section. She describes her family's experience with her husband's frontotemporal dementia.

Thursday, April 8, 2010

Dementia Blog

Check out Susan Schultz' Dementia Blog.

Schultz writes "The Dementia Blog was written over the course of six months during the worst of my mother’s dementia. In August 2006 she was still in her home; by January 2007 she was settled into an Alzheimer’s home. The blog, like all blogs, moves backwards from the present into the past. Because it moves back, the reader has no sense of cause and effect and often does not recognize what has happened until reading further back. This form struck me as appropriate to a meditation on memory and self-loss."

It is a fascinating collections of images, including these poignant lines,"— The woman who is not wearing shoes comes up behind me and places her hands on my shoulders. She squeezes them. I turn and ask her name. She does not know."

Perhaps other people will or have used Schultz' to record their experiences in being a caregiver.

Tuesday, April 6, 2010

Thirty Seconds Before Dinner

Esther Altshul Helfgott's poem with its image of Harley-Davidson motorcycles, puts me in mind of the story from London about using replays of soccer, or what the rest of world calls football, to reach sports fans living with dementia.
Football Replay.

I love her image
"but this Harley flew
out of the picture frame
as if it were a bird."

You may read Esther's blog at Witnessing Alzheimer's

He was different tonight
more withdrawn
though he did raise his arm
when he saw a motorcycle
hanging on the wall.
You wouldn't expect
to see a Harley-Davidson
in a nursing home
but this Harley flew
out of the picture frame
as if it were a bird.
Abe was astonished,
even though his facial muscles
remained tight
and his mouth stayed closed.
For thirty seconds his eyes lit up.
Afterwards, we returned to where we were before:
me wondering what to do next,
he not waiting to go to dinner.

Sunday, March 28, 2010

APP poet Zoë Bird reports on Valentine Day at Sierra Vista, in Santa Fe



This was a special, short Valentine’s visit with the Dragonfly kids. On Monday, Feb. 8, we all got together and made valentines for the S.V. residents using recycled materials in the Sapling classroom; each of the 6 kids made 4 valentines for each of S.V.’s 24 residents. They were beautiful, and very touching; Helen, for example, made a valentine for Helen the elder reading, “Happy Valentine’s Day, Helen! I love you. I have the same name as you. Love, Helen!!!”

Actual delivery of the valentines on the 10th was really moving. Many of the residents were napping when we arrived, but the 6 kids presented their valentines to those who were present and the emotional reaction was tremendous. Residents were smiling, weeping and singing (Lupe sang, “America the Beautiful” and Frankie sang “Love Me Tender,” beautifully). The kids were shy at first, but warmed up with all the good feedback & seemed very happy about the visit. Molly (their teacher) & I were crying too!

Joel, an especially sweet and encouraging soul, seemed so overcome that I asked if I could give him a hug, and he accepted. I only got a chance to take a couple of photos, but the one with little Helen walking back from bestowing her valentine on a former kindergarten teacher shows something of the pride the kids felt & the level at which the residents were touched by our special “We love you” visit. Very, very special day.

Love me tender, love me sweet
Never let me go
You have made my life complete
And I love you so
Love me tender, love me true
All my dreams fulfill
For, my darling I love you
And I always will.

Love me tender- Ken Darby

Bright star, would I were steadfast as thou art--
...Not in lone splendour hung aloft the night
And watching, with eternal lids apart,
...Like nature's patient, sleepless Eremite,
The moving waters at their priestlike task
...Of pure ablution round earth's human shores,
Or gazing on the new soft fallen mask
...Of snow upon the mountains and the moors--
No--yet still steadfast, still unchangeable,
...Pillow'd upon my fair love's ripening breast,
To feel for ever its soft fall and swell,
...Awake for ever in a sweet unrest,
Still, still to hear her tender-taken breath,
...And so live ever--or else swoon to death.

.....Bright Star- John Keats

Tuesday, March 23, 2010

Between Us

Between Us*
By Ken Saulter

Losing my memory,
losing it to disease,
is getting to be a problem.
Like when I'm in a in a group
and people talk to me
and suddenly I fall silent,
while my brain skips a beat.
They, and I, know it's not a senior moment.
Eyes divert to shoe laces or thereabouts.
The moment becomes one of palpable regret.
So here I am, a fraction of a person,
a clown without make-up or costume,
waiting giant seconds to recover.
They say I will not remember
these separation bricks
in the wall that is, regrettably,
being built between us.
I worry about forgetting habits, like
my gym locker combination,
after 20 years of use, and my many passwords,
and then, someday maybe,
where I live; or maybe not.
And, against our will,
the wall gets higher and higher,
But, I keep on living.
trying to lower the wall
or slow it down,
or build a gate,
or something.

kjsaulter@gmail.com; March 22,2010. Ann Arbor, MI;
*Inspired by the poem "Tea Time",
in Slamming Open the Door by Kathleen Sheeder Boanno;
Alice James Books.

Monday, March 22, 2010

Beyond Forgetting


Denis Glover with Hone Tuwhare from a 1976 tour.

I like Drew Myron's poem, "Erosion," from the new anthology edited by Holly Hughes, with a forward by Tess Gallager, Beyond Forgetting.

Myron writes about the poem, "I'm honored to have 'Erosion,' a poem about my grandfather included in the book. My grandparents Bart and Lu (Lucinda or Lucy) Myron were wheat farmers in Washington's Spokane Valley. After 40 years of farming, they retired and spent winters in the Arizona desert. In their last years, they lived with my parents. Bart lived to nearly 95 (just a few months shy) and Lu lived to 97."

The poem ends:

futile to search for data:
the face of a son, the hand of the wife
price of wheat, words,
any words to rise, rescue us

from this wait,
this long silent loss.

You may read the whole poem here:
http://www.drewmyron.com/poetry

Myron's poem with its rural images and knowing it is inspired by her farmer grandparents, puts me in mind of Denis Glover's "The Magpies," which is one of New Zealand's best known poems. I had the good fortune to hold a poetry session at an adult day care center, in Wellington, a few years ago and was introduced to the poem. We got everyone saying the poem together and the "Quardle oodle ardle wardle doodle," was delightful to perform.

The Magpies

When Tom and Elizabeth took the farm
The bracken made their bed
and Quardle oodle ardle wardle doodle
The magpies said

Tom's hand was strong to the plough
and Elizabeth's lips were red
and Quardle oodle ardle wardle doodle
The magpies said

Year in year out they worked
while the pines grew overhead
and Quardle oodle ardle wardle doodle
The magpies said

But all the beautiful crops soon went
to the mortgage man instead
and Quardle oodle ardle wardle doodle
The magpies said

Elizabeth is dead now (it's long ago)
Old Tom's gone light in the head
and Quardle oodle ardle wardle doodle
The magpies said

The farms still there. Mortgage corporations
couldn't give it away
and Quardle oodle ardle wardle doodle
The magpies say.

Sunday, March 21, 2010

Kate Marshall Flaherty

Kate Marshall Flaherty recites her poem, "Faraway."



Kate Marshall Flaherty is a poet, yoga instructor, founding member of the Peace Theatre and guide of teen retreats on the Golden Rule. She lives in Toronto with her husband and three spirited teens. "Far Away" was inspired by visiting her own Grandma Millie in Bethel Nursing Home, NY, when on one visit her Aunt had cut and taped up pictures of clothes in order on the wall after Grandma had put her panties over her dress.

Kate remembers that no matter how foggy or quiet or vacant the day might be, that Grandma Millie always called us "my friend" as a kind way to cover that she'd forgotten our names, and she always brightened up for lemon squares.

Musician Mark Korven heard the poem several years ago and was moved to write the bittersweet Nyckleharpa music for it. He and actor Tony Duggan-Smith found the Guild Inn Estate grounds the perfect wintery scene for the reading with its random and haunting architecture.

Saturday, March 20, 2010

The Circus


The poem "The Circus," was created by residents of Oak Park Place in Baraboo, Wisconsin, in July 2009. The poem was composed by asking people to describe seeing a circus parade, what they liked about circuses, what type of food you would eat and what animals you might see at a circus, the answers are in order as given. The prompts are not included in the text. The second and third lines are from a well-known song and the residents
sang them throughout the performance of the poem as a type of chorus or refrain. The poem celebrates the town being the hometown of the Ringling Brothers and taps into the vivid images associated with the long history of circus parades in Baraboo. The photo shows participants creating the poem. Photo Credit: Brian D. Bridgeford/Baraboo News Republic, Baraboo, Wis.

The Circus

I like the Trapeze performers, the aerialist, and the moment they let go...

He'd fly through the air with the greatest of ease,
That daring young man on the flying trapeze.

Too busy farming to go, but if I did, I would like to see:
lions, tigers, ponies to ride, and elephants.

Colorful exciting bands, beautiful horses,
circus wagons of gold and red,
they came from all over.

Trapeze artists...will they be caught or will they fall?

He'd fly through the air with the greatest of ease,
That daring young man on the flying trapeze.

I enjoyed everything that makes the circus fun,
horses, ponies, big animals, small animals.

I am not as acquainted with elephants.

A dinosaur would be the biggest animal in the circus.

Zebras, people-
all kinds of people- clowns,
people are clowns!

He'd fly through the air with the greatest of ease,
That daring young man on the flying trapeze.

It was an adventure- never been before,
we took off from farming,
rode in the back of a pickup truck.

Something different that's for sure.

Cotton candy.
Peppermint striped taffy.
Peanuts.
Popcorn.
Hotdogs.
Root beer.

He'd fly through the air with the greatest of ease,
That daring young man on the flying trapeze.

I'll stay away from you tiger.

A forty-horse hitch! The calliope!

He'd fly through the air with the greatest of ease,
That daring young man on the flying trapeze.

The parade went right by my house,
it was exciting, with clowns and animals.

Keep up the good work clowns!