MUSIC

How Glen Campbell changed the conversation on Alzheimer's: 'In silence we make no progress'

Jessica Bliss
The Tennessean

The lyrics of his many hits escaped him.

But the melodies and the pitch that made Glen Campbell a country music legend still resonated in spite of the disease that claimed his mind.

At Station West recording studio in Berry Hill in 2012, Campbell positioned himself behind a microphone and sang personal favorites he never before had the chance to record.

He read the lyrics line by line, his tenor stirring and deep with emotion, his Alzheimer's showing aggression, but his intent resolute.

An extended goodbye and public struggle

It was all part of an extended goodbye, and a very conscious decision to be public with a personal and painful struggle.

"Glen thought that was probably the most important thing he could ever do," his wife, Kim Campbell, said in an interview with The Tennessean earlier this year. "And I think he’s right.

Glen Campbell

"You just wanted to root for the guy, because he was so open and honest."

Campbell died on Tuesday, after nearly eight years with the disease.

More:Glen Campbell, 'Rhinestone Cowboy' singer, dead at 81

Before he passed, he arranged a global farewell tour, filmed a documentary that lifted the veil on his condition and recorded a sentimental final album, “Adiós,” which was released in June.

It was his ability to face his Alzheimer's, to embrace it, to laugh at himself and to step on stage and sing even when he didn't always remember the words, that turned personal devastation into a shared pain.

And that, his friends and family believe, made an incredible difference — not only for those who face the disease in solitude but also for Glen Campbell himself.

“I think it extended Glen’s life very much," said Campbell's dear friend and Grammy-winning performer Carl Jackson, who produced “Adiós.” 

"And I know it extended his happy life."

Panic

The signs appeared as early as 2009.

Occasional memory lapses. Mild cognitive impairment. Uncharacteristic behavior at home.

At the time, Campbell was touring, and his wife, Kim, was studying interior design at UCLA. 

They lived in Malibu, enjoying life. But inside Kim panicked.

There was certain information about Alzheimer's she didn’t seek — intentionally. She didn’t want to know what the final stages of the disease would be like. She tried to protect herself from the worst. She wanted to take each day as it came.

"You just want to live and love and make the best of each day," Kim Campbell said earlier this year. "Cherish every moment you have together."

A disease that creeps up on you

Family photos sit on the piano inside country music legend Glen Campbell's Nashville home.

Alzheimer's is "a disease that creeps up on you," says Dr. Paul Newhouse, the director of the Center for Cognitive Medicine at Vanderbilt University Medical Center. 

It robs people of their memories and personalities. Individuals and families tend to ignore it in the very early stages, Newhouse said, because they are scared — because they hope it will go away.

But, he said, "If we suffer in silence we make no progress."

Glen and Kim Campbell chose to be public with their very private struggle. All the while, Kim Campbell held tight to a piece of advice she now shares with others.

"Don't disappear," Kim Campbell said. "It’s a long journey, so you still have lots of years of good happy life to live.

"Let people know what you are going through."

And that is what the Campbells did.

It wasn't always easy.

Kim Campbell and Glen Campbell

"People don’t understand that Alzheimer’s is not just about losing your short term memory and then your long term memory," Kim Campbell said, "but you can become paranoid, suspicious, violent. You lose your ability to think or reason."

As a fulltime caregiver, Kim Campbell dealt with depression and loneliness. 

When personal devastation becomes poignant

Country music legend Glen Campbell revealed that he has Alzheimer's nearly six years ago. Now, as he is in the final stages of his disease, his wife of 34 years, Kim, is sharing the story of her experiences as a caregiver.

But she, too, was public with her journey. She traveled the country for speaking engagements during which she shared her story and her family's hardship, and she started a caregiver's support website, www.careliving.org.

Newhouse worked together with Kim Campbell on several projects, including writing blogs for her site and collaborating on initiatives for the Global Alzheimer's Platform.

He commended the Campbells for the bravery it took to be open about their tragedy.

Dealing with memory loss is painful for any person and his or her loved ones, but when you are a famous musician and public figure the personal devastation becomes poignant for so many.

President Ronald Reagan was one of the first to live with the disease in the public eye. As the country shared the pain, his wife, Nancy, became a loving caregiver and an open advocate for understanding and a cure.

Pat Summitt's Alzheimer's diagnosis in 2011 made the disease very real to Tennesseans. The legendary coach, who won more games than anyone else in basketball history — man or woman — spoke publicly about her battle.

So, too, did legendary songwriter Kris Kristofferson, who suffers from memory loss that was thought to be dementia, though he recently learned it was Lyme Disease.

Hearing others' stories is "incredibly valuable," Newhouse said. "I think it allows people to say, 'That’s me too, that’s my family too.'"

You are not alone

Glen Campbell on the tour bus during the “The Goodbye Tour,” photographed during the production of GLEN CAMPBELL...I’LL BE ME, directed by James Keach.

Shortly after his diagnosis, Glen Campbell went on his final tour. He played more than 150 shows, reading lyrics off teleprompters, but showing no shame.

Yes, there were concerns, at times.

Just before an appearance on Conan O'Brien's show at the end of 2011, he looked around and said: "What song are we playing?" He had rehearsed two songs for the show earlier that afternoon.

He also fired the band three times on his final tour stop in Napa in 2012. Each time, he forgot a little while later why he had fired them.

But through it all, he allowed cameras to record.

They captured the unguarded moments of pain when recognition slipped, and they also showed the warmth that remained even when the memories did not.

And with the final documentary, "Glen Campbell: I'll Be Me" released in 2014, the Campbell family ensured that the conversation about the debilitating disease would continue.

"To let people know that there’s hope out there, there’s help out there, they don’t have to do this alone," Kim Campbell said earlier this year. "They can’t do it alone. It will take you down."

A great talent, a great man

Even a few weeks ago, in the waning days of his life, Glen Campbell still had that laugh and that smile, Jackson said.

Sharing that, producing the final album of the friend and mentor who changed the lives of so many, was one of Jackson's greatest joys.

But the story doesn't end with Campbell's passing.

Campbell's gift is what he's left for others: his music, his documentary, his humor and his humility in face of a devastating disease.

It's all a memory — of him.

"Nobody in this world is better than Glen Campbell," Jackson said. "He was like a machine and he had an incredible, perfect pitch.

"For those people that know that, I hope it reaffirms that.

"And for those that don’t know it, I hope they discover it all over again — and that even more people know what a great talent and what a great man he was."

Reach Jessica Bliss at 615-259-8253 and jbliss@tennessean.com. You can also find her on Twitter @jlbliss.