NASHVILLE— As music legend Glen Campbell enters the final stages of Alzheimer’s disease, his family is giving the world a rare glimpse inside his battle with the disease.
Campbell’s wife of 32 years, Kim Woolen, recently took NBC’s Cynthia McFadden to visit her 78-year-old husband at a full-time care facility in Nashville, where the entertainer has been living since March.
Despite the progression of the disease, Campbell brightens when he sees his wife and amazingly, can still play the guitar. Experts say Alzheimer’s patients often communicate in their “first language” as the disease progresses — for Campbell that language is music.
The five-time Grammy winner and Country Music Hall of Famer went public with his Alzheimer’s diagnosis in 2011, hoping to raise awareness about the devastating disease.
“We need to let people know about this disease, we need to do something about it,” Woolen remembers her husband telling her at the time. “He really made himself vulnerable, because he wanted to make a difference.”
Campbell has not performed in public since November of 2012. Today, his record label released his final studio recording: a heart-breaking ballad, “I’m Not Gonna Miss You.”
The single was recorded in January 2013 — just months after Campbell stopped performing in public.
Campbell’s wife tells McFadden that her husband’s doctors have told her he is now nearing the end of the 6th stage of Alzheimer’s, and requires 24-hour professional care. The disease is measured in 7 stages, with the last being the most severe.
“He’s still Glen Campbell, and he still loves and feels and expresses joy and sadness,” Woolen says. “I thank God each day that I have with him that he still knows who I am.”
Campbell announced he would head out on a three-to-five-week goodbye tour, but ended up completing 151 concerts over a year and a half. The journey is chronicled in a soon-to-be- released documentary, “Glen Campbell: I’ll Be Me.”
In scenes that will be both painful and familiar to the 5 million American families walking the same path, the film captures Campbell’s struggles with memory loss.
When filming begins, Campbell is in stage two of the disease. His good humor, his ability to laugh at himself, and his joy in having his family with him on the road is obvious. But as time passes and the disease progresses to stage four, the pressure of performing takes its toll — His frustration and confusion sometimes spills over into angry rants.
The performances captured in the film are pure gold. Remarkably, even when the lyrics are hard for him to summon up, he plays the guitar like the world-class musician he has always been.
One scene is particularly poignant: a “dueling” guitar-banjo riff which he plays with his now 27-year-old daughter, Ashley, who hopes her father’s story will change how the world sees people struggling with the disease.
“He was just so honest on stage, and not hiding anything,” Ashley Campbell says. “I hope it takes away the shame some feel about people going through this.”
In city after city, the documentarians capture the delight of audiences at seeing the music legend perform. As for Campbell, it is clear he retains his love of performing, and the crowd gives him strength and energy.
“He just feeds off the audience and their love and excitement,” Woolen remembers. “The doctors all told us they thought that was one of the reasons he was doing so well, because he was continuing his music.”
In March, Campbell’s doctor, Dr. Ronald Petersen, Director of the Mayo Clinic Alzheimer’s Disease Research Center, advised Campbell’s wife that it was time to move him to a specialized memory care facility that could care for him 24 hours a day.
“I spoke to Kim in the spring about Glen’s safety and quality of life. His behavior at that point was compromising both his safety and hers. Based on the state of his disease at that point, I advised her it was in everyone’s best interest for him to reside in a facility outside their home. When the disease reaches a certain stage the patient is not really aware of where they are residing, and it doesn’t really matter to them where they are, so long as they are provided with loving care. Glen had reached that stage.” Dr. Peterson says.
“A move like this was very much in Glen’s best interest. It will improve his quality of life as it enables Glen and Kim to interact more as a couple than as caregiver and patient.”
Kim says she is at the facility every day feeding her husband lunch and bathing him.
The documentary is produced and directed by James Keach and producer Trevor Albert. Keach produced the Oscar-winning movie “Walk the Line” about the life of Johnny Cash.
Keach’s close relationship with Cash prompted Campbell to approach him in early 2011, when he first suspected he was suffering from the disease.
“He wanted us to tell the gnarly truth,” Keach says. “You’re showing the audience what this man is up against, and what 44 million people are up against worldwide.”
“I’ll Be Me” features interviews with Bill Clinton, Taylor Swift, Bruce Springsteen, Keith Urban, Brad Paisley and many other celebrities who discuss Campbell’s impact on music and the importance of finding a cure for Alzheimer’s.
The documentary will be released on October 24th in New York and Nashville, then in 50 select theaters nationwide.
According to the Alzheimer’s Association, the number of Americans’ suffering from the disease could reach 16 million by 2050.
Campbell’s wife hopes the film will encourage more federal spending on research.
“If it doesn’t affect your family now, it will in the future,” Woolen says.
After 50 years in the business and 50 million records sold, Glen Campbell’s most enduring legacy may be the courage he’s demonstrating by letting the world see what it is to live with Alzheimer’s disease.
Watch Cynthia McFadden’s visit with Glen Campbell and his family, tonight at 6:30 p.m. ET on “Nightly News with Brian Williams.”