With the Glen Campbell film, Hollywood's star power fights the disease.
By Sue Campbell for Next Avenue
Superstar singer Glen Campbell and his family made an important and generous decision by deciding to take their private experience with Alzheimer's public.
The family invited a film crew to capture not only Campbell's final tour as he struggled with Alzheimer's, but also initimate details of their life over a three-year period. The result, Glen Campbell: I'll Be Me
, is a heartbreaking, uplifting documentary that above all puts a human face - a famous and beloved one - on the much-feared disease.
It's powerful to see a performer known for his pure tone, superhuman guitar playing, good looks and easy manner at his most vulnerable - often lost and utterly dependent. Through the changes Alzheimer's cruelly brings Campbell, his family stands by him, not only caring for him physically, but also helping him perform on stage. This allows him to hang onto, as his son Cal describes it in the film, the deepest part of his brain and memory: music.
I saw I'll Be Me
at the LeadingAge conference in Nashville, Tennessee, last month with a crowd of about 3,500; LeadingAge is a group of nonprofits dedicated to aging. (The film's now showing in select theaters nationwide.) After the screening, the movie's producer, James Keach (Walk the Line
), came onstage to introduce Campbell's wife Kim, and children Cal, Shannon and Ashley.
He then asked anyone in the crowd with a personal link to Alzheimer's to rise. Almost everyone did.
"Wow," Keach said, momentarily stunned.
New Foundation, New Support
Keach, who was married to actress Jane Seymour when he began the film, then announced that he is starting the I'll Be Me Alzheimer's Foundation. Its goals are to support caregivers, fund Alzheimer's research and create awareness, partly through celebrity engagement.
"I think Glen Campbell will do for Alzheimer's disease what Magic Johnson did for AIDS," Keach said.
Later, LeadingAge President and CEO Larry Minnix said his organization plans to keep working with Keach and the new foundation. "They shot 5,000 hours of film that didn't make it into the final movie," Minnix said. "What can we do with that?" One possibility: create training films for people who work with dementia patients.
I'll Be Me
includes a segment on Ashley Campbell testifying before Congress in 2013 about her father's condition, making a plea for federal Alzheimer's funding. She chokes up during her speech, as her father sits silently next to her.
The power of celebrity to make a difference is profound. Seth Rogen's February 2014 Congressional testimony about Alzheimer's (his mother-in-law was diagnosed with the disease) caught the attention of a new audience nationwide. Rogen's Hilarity for Charity movement aimed at college-aged people, continues to raise awareness and reduce stigma about Alzheimer's.
As it turns out, young celebrities reaching out to their audience about the disease makes sense. Their generation has a vested interes in finding a cure for the tough disease they've seen afflict their grandparents and parents.
I saw that interest in Nashville, too. After the movie, the bands Delta Rae and The Band Perry performed, as did Ashley Campbell's band (featuring her brother Shannon). Taking the stage, Delta Rae thanked the Campbell family for talking about Alzheimer's, "as one family band to another dealing with this issue."
Campbell's experience firmly shows how Alzheimer's demands creative expression - some way to release the pain and confusion of experiencing the disease - by those who have it and by their loved ones.
Ashley Campbell, now 27, wrote a song from her perspective, "I'll Do The Remembering." She sings:
"Bone for bone, we are the same...
We can talk until you can't even remember my name
Daddy don't you worry, I'll do the remembering."
And for I'll Be Me
, Campbell took to the studio for what his family says is his final recording: "I'm Not Gonna Miss You." The lyrics include these poignant lines:
"I'm still here but yet I'm gone
I don't play guitar or sing my song
It never defined who I am
The man that loved you 'til the end
You're the last person I will love
You're the last face I will recall
And best of all...
I'm not gonna miss you."
Despite having a disease that's robbed him of almost everything, Campbell's music and courageous movie prove that The Rhinestone Cowboy still has the power to move people.