FORGET MEMORY BLOG

“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.

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.

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.

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!

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.

The long plane flight to Brussels gave me a long overdue chance to read/finish a couple of books, including Susan and John McFadden’s Aging Together:  Dementia, Friendship, and Flourishing Communities.

I’m a long time fan and friend to both John and Susan, and I have them both to thank for the development of my own ideas on dementia.  So reading this was a personal journey (watching our friendship and conversations over the years evolve into the printed word) and a professional treat (gasping at times at the beauty and solidity of their ideas/words).

The book is academically rigorous – incorporating research from fields of theology, psychology, sociology, history — and yet also inviting and readable.  It could be a text for grads, undergrads, or informed readers.  What any level of reader will walk away with is a deeper understanding of:

-the history and theory of self, community, and friendship

-the history and theory of the state/diagnosis of dementia

-personal stories/models of how families with dementia have negotiated the challenge of maintaining love and friendship

There were moments when their framing of the issue made lightbulbs go off…as in their discussion of the history of how “man” being created in the image of God has changed across time.  Pre-enlightenment, it was the BODY that was imagined as created in the image of God.  Thus leprosy was seen as an abomination.  Post-enlightenment, it was the MIND that was imagined to be created in the image of God.  Thus dementia is seen as the new leprosy.  We fear and distance ourselves from it at all costs.

Another moment was their careful analysis of the various types of friendship, and the realization that friendship has fallen victim to capitalism and been commodified.  The true rewards of friendship operate outside of the value/market exchange.

Finally, my favorite element of the book is their notion that the biggest challenge for people with family/friends with dementia comes at the moment when fear and compassion both flare up.  In my mind, this book is an effort to help coach us through that moment -to calm ourselves in the face of tremendous fears and to choose the path of compassion.

Thanks to Kirsten Jacobs of Leading Age for bringing together an inspiring group of folks working in creative engagement for the Sat. Oct 15th 4.5 hour preconference session.

Kirk Murphy of Sandglass Theater in VT provided an overview of their project with Renya Larson and the folks at Holton House in Brattleboro.  They used the TimeSlips storytelling process to elicit imagination-based stories and then created a puppet theater piece inspired by the storytelling sessions.

Kelli Holsopple of Phoenix Theatre Ensemble in NYC led the group through the creation of stories and movements about the word “evolve,” and shared clips from the documentary Stages which follows an intergenerational theater-making process.

I talked about the Penelope Project as an attempt to infuse creative engagement into an entire care facility – encouraging ensemble/collaboration not just among the residents and an activities professional or visiting artist, but also among the entire staff, family, volunteers, and admin team.  We walked through a few of the creative discussions that were led by students and staff during the “data gathering” period, and then talked briefly about the play itself.

Finally, Michelle Pearson and Shula Strassfeld of the Dance Exchange led us through a series of engagements with a scrap of newspaper – movement, current events, and discussions (and then physical manifestations) of our reactions to the news, our own news, and what was missing from the news.   All along, they shared the stories of using this method in intergenerational settings as part of a MetLife grant to infuse creative engagement into long term care.

Questions that lingered among the group of nearly 40 attendees included 1) how do you approach an arts group to partner? 2) how do you fund these? 3) how do you get buy-in from your organization?

I sooo look forward to the UWM Create/Change Summer Institute now (June 24-28, 2012) – it’ll be an opportunity to explore all these issues and more, all taught in collaboration between a long term care partner, and arts partner and a university partner!

It’s been a jam packed 5 days here in Maastricht, Netherlands for the meeting of the European Network in Aging Studies and the 7th International Symposium on Cultural Gerontology.  It has been an incredible experience to see aging from an international perspective, and to be among so many humanities and arts scholars.

There is some great work being done on using creativity in dementia care, including some on clowning and horticulture.  Lots of social theory.  Lots of reading representations of aging in film, magazines, novels, and plays.  I think my favorite paper was an analysis of the notes on 42 hours of meetings about client needs – looking at how decisions about care are reached.

I gave my first, at length presentation on the Penelope Project.  It was a challenge to try to describe it all in just 45 minutes…I was worried that my talk – all about arts practice – wouldn’t fit in with the conference.  But I now see it as a living practice of the concept of the relational self about which there is lots of discussion, but very little examples.

It also made me miss the team.  The crying handmaidens.  The choral members.  The students.  Rusty.  Joyce.  All the Sojourn gang…  I look forward to presenting the project WITH some of them next week in DC at Leading Age.

The new TimeSlips.orgwebsite is now available to the world – so go ahead world!  Start playing!

Let your imagination soar!

Several years in the making, this site was designed to bring creative storytelling (and a bit of joyful play) to people with cognitive disabilities wherever they live.

Here’s what we hope to be a common scenario:

Patty lives at home with her husband Ron who is having great difficulties with cognition and memory.  They visit the site, sign in, pick an image they like, and start telling a story together right there on the computer.  They use the “collaborate” feature to invite their son (who has stopped calling because he doesn’t know what to say…) to tell the story with them.  His answers are hilarious.  As are Patty and Ron’s.   They also invite Ron’s best friend Bill (who now lives too far away to visit) to tell the story with them and their son.  Together, they create a story that reflects a rich array of humor, love, longing, sorrow, and joy.  Patty “publishes” the story on the site and emails it to their whole network of family and friends.  The next day, Patty receives an email request to tell a story from one of their daughter who lives several states away.

Sharing joy.  Growing.  Playing.  Finding a way to reach each other.  That’s what the new website can do.

It can also be used in group and facility-based care settings as a way to engage groups of residents/participants, and as a way to connect with families.

One needn’t take the training to play on the site.  But we do recommend it.  And the training is actually really fun.  Lots of videos and a newly written/designed training manual.

Enjoy.  And tell your friends.  This site can be an amazing tool for families with dementia, but only if they KNOW about it!