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Seeing the Possibilities

A well-written and thoughtful piece in the NYT’s today.  I haven’t read his new book (The Living End) yet, but this brief essay suggests he clearly sees much more than loss in the dementia experience.

There is definitely a shift in the air…at least in the memoirs about the dementia experience.  The policies and official organizational language still lag, of course…but perhaps with the army of the newly diagnosed helping to fight for their dignity, even those will begin to change.

 

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Glen’s Farewell

“This Wichita lineman is still on the line.  And I’m doing fine.”

I wrote an essay several years back on autobiographies by people with dementia.  The bulk of them at that time were chronologically told – and hid evidence of the condition in seamlessly told narratives.  Could you make a statement about the strength of people with dementia if you didn’t actually perform or show dementia itself?

Well.  I saw the Glen Campbell show tonight.

I didn’t take notes.  And honestly (and ironically), I’ve forgotten a couple of the most poignant moments – lines from songs, or quips that he rattled off that were spot on – performing both strength and his condition at the same time.  But the overall evening will be with me forever.

I brought my 6 (soon to be 7) year old son Will and my 10 year old son Ben.  Both are musicians.  And I brought my 74 (soon to be 75) year old mom and dad.  I can see the Glen Campbell album covers in my dad’s collection.  I can hear them.  I can hear dad playing guitar.  And I play – still – and aspire to the velvet tones and agile fingers of Mr. Campbell.

The show is clearly billed.  This is a farewell.  He has made his Alzheimer’s public.  The Alzheimer’s Association walked through the aisles with buckets for donations.  There are no surprises.  There is no hiding anything.

On the contrary, it is quite visible.  Glen gets hung up on things that he can’t let go of.  The sound levels were a particular distraction at tonight’s show.  He mentioned them, during songs, multiple times.  Too loud.  It’s too loud here.   He seeks out the monitor with the lyrics.  He skips a line here or there.  But just as you get used to the skips, he bursts into a guitar solo that takes your breath away.  And you feel the strength amidst the loss.  Just as you get used to his daughter Ashley (one of three Campbell children on stage) explaining that he is borrowing her guitar because his keeps shorting out  (and if you know Alzheimer’s you think…oh – something out of the routine is the LAST thing they need…), Glen goes into a solo (acappella) of the Moon is a Harsh Mistress that blows your heart, mind, and soul.

For me, it was a thick night.  Visions of the musicians my children will become (if I’m strong enough to make them practice).  Memories of the music my dad played (vinyl and live).  And the music inside me.  It was also the antidote to so, so many public message/images/stories of Alzheimer’s that I’ve spent some 15 years complaining about.  “Alzheimer’s is more than tragedy,” I say.  People are still living.   And here it is.  An unapologetic performance of dementia, combined with inexorable beauty — in the music and in the powerful scaffolding of a family that embraces and supports him through it all.

The gorgeous new songs with spot-on lyrics – Ghost on the Canvas and A Better Place.

The dueling banjo/guitar.

I Can’t Stop Loving You.

Glen turning the microphone toward the audience for an exuberant  sing along of “There’ll be a load of compromising, on the road to my horizon, but I’m gonna be where the lights are shining on me!”

So many moments made richer by the open and unapologetic embrace of vulnerability, mortality, and memory loss — of Glen, and eventually, of all of us.

Thank you Glen and Kim and family –  for your enormous generosity and bravery.  I wish you more of both as you continue on your journey.  And may the lights shine on everyone with dementia.

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The Penelope Project aimed to build community in a long term care setting through an extended and rigorous creative engagement project.  Even now, almost a year after the final performance of the play that wound its way through Luther Manor last March, I’m still overwhelmed by the emotion of the experience.  When I go back to visit now, I just like to sit in the company of people who participated.  “I know…” our eyes say to each other.  “It was incredible.”  One woman, who participated in countless creative discussions, and who played one of Penelope’s weavers in the scene in the health center,  said “that was the last important thing I’ll do with my life.”  I told her it felt like that for me too.

To share the model and inspire others to create their own extended, rigorous, collaborative projects, the partners behind Penelope are offering a Summer Institute.  From June 24th to June 28th, attendees are invited to experientially learn:

  • the meaning and power of partnership
  • the basics of aging and dementia
  • how regulations shape (and don’t shape) activities in long term care
  • some basic techniques for collaborative storytelling and art-making
  • how to work “site-specifically”
  • how to ignite individual and organizational change
  • how to do simple project evaluation
  • how to design a project

We will also premiere the new documentary about the Penelope Project at the Institute.

Come join us for this exciting experience, taught by the artists, teachers, researchers, care-providers, and residents who collaborated on this unique project.

REGISTRATION IS NOW LIVE at www.aging.uwm.edu.

 

 

 

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Ventrioloquism

Re the article Ventriloquism Helps Memory in the AARP Bulletin – I’m thankful that AARP is profiling positive engagements with people with dementia.  But they simply must find a new language to do it.  People with Alzheimer’s are MORE than “patients.”  And the old trope of “second childhood” is just offensive.
I do hope AARP continues covering this important issue — which will only grow in relevance to people of every age.  But the framework and language must change.

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The Spark of Creative Engagement

Here’s a lovely article about one of the 10 cultural institutions in the Spark Alliance here in Milwaukee.  These museums and cultural organizations are part of transforming the culture of dementia care by making everyday life accessible to and embracing of families with dementia.

 

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Today Show Segment on TimeSlips

What a lovely job the Today Show crew did -click here to watch it.

they were genuinely open to and moved by the storytellers – and I think it showed in their editing/narration of the segment.  A hopeful image/story of dementia…

Let us know what you think!

 

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TimeSlips on the Today Show

Back in October 2011, the Today Show crew came to Milwaukee to shoot a segment on TimeSlips creative storytelling.  The project had just launched a huge new website with free, interactive storytelling software designed to bring creativity to families with dementia wherever they live, as well as a 5-module online training in the method.

Looks like the segment is scheduled to air on Friday the 25th, between 7:30 and 8:00 a.m. EST.

Jenna Bush was the reporter on site in Milwaukee – she had a tremendous ease/comfort with the group of storytellers gathered at the Luther Manor Adult Day Center, and clearly understood the power and value of storytelling.

Jenna interviewed the staff, storytellers, a family member, and me – the whole TimeSlips crew is hopeful that this segment can inspire families to move through their fear to find each other again through stories – real or imagined.

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