FORGET MEMORY BLOG

On Memorial Day, I’ll make my way to Pittsburgh to give the Jay L. Foster Community Lecture on Alzheimer’s hosted by the U of Pittsburgh’s Graduate School of Public Health. 

The talk of my title is Forget Memory – Try Imagination.  Today I was putting together the powerpoint and included some of the groups I just met/learned about over at the Creating a New Old conference in Ireland. 

One of those groups is Spare Tyre, based in London.  They have a pretty remarkable program called “Once Upon A Time” which uses mythic storylines in a rich sensory (touch, light, sound, texture etc), process of engaging with people in mid-to late stages of Alzheimer’s.  The slide show on their website really captures the power of this work. 

Can’t wait to share it, along with so many other great projects out there.  Of course I get to share a bit of the Penelope Project and some early ideas on the new project, Shipwrecked! 

If you think about it, what would you most need if you began to have memory lapses and the world around you began to feel unfamiliar?  Unable to place faces.  Unable to recognize landscapes. Objects.

Familiar things.  Familiar pathways.  Familiar sounds.  Familiar objects.  Reassurance and comforting when the lapses occur.  And opportunities for symbolic self expression when cognition blocks or interrupts rational language.

Two recent articles in the NYT’s affirm this approach, which is, at last, starting to make sense to the general public and care providers.  Cathy Greenblat’s new book of photographs and an article about a care facility just outside Amsterdam show us how engagement, expression, and the built environment are, as John Zeisel says/writes, part of the treatment plan.

I had the distinct privilege of spending 4 days with over a dozen documentary filmmakers this past week.  11 projects were selected out of 130 (yes, 130!) to be part of REEL Aging, a retreat hosted by Working Films that aims to help films develop solid outreach and engagement plans.  In other words, they figure out how their films can make a difference beyond broadcast.

I’ve written extensively about the stories we tell about aging and dementia – and about how they need to change.  Well…they are.  I was overwhelmed at times (cried like a baby…or maybe that was Banker’s baby) at the depth of talent and power of story in that room.  And all of it aimed at helping change the way we think about aging and the quality of life of all of us as we age.

Some of the films are already finished.  Some you can look for in the near future.  For sure I’ll be hosting a film series in Milwaukee – so those of you in my neck of the woods have that to look forward to.

There are several dementia-oriented films coming out soon – all of which push us to see the world through the eyes of the PERSON with dementia.  Trevor Albert is working on a documentary about Glen Campbell’s “farewell” tour.  Scott Kirschenbaum’s You’re Looking at Me Like I Live Here and I Don’t is out THIS WEEK (I can’t wait to see it…).

And my new friend Banker White is at work on The Genius of Marian, a beautifully crafted story of his mother’s effort to create a book about his grandmother’s life as an artist (shortly after she died of Alzheimer’s) – only to discover that she has young on-set.

All three are stories of strength, of sorrow AND of joy, and of families coming together.

When I wrote Forget Memory, the chapter on film was fairly bleak.  The best representation of dementia was a little blue fish named Dory.  But now, just a few years later – there is abundance. What hope for families.  And they will need all of these films they can find – it’ll take a 100 of them to move the medical establishment and the stigma.

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.

“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.