Even the name is hard: Alzheimer’s.
But for Kim Campbell, wife of legendary country singer Glen Campbell, who has the disease, it’s more than that. Yes, it’s difficult, but it also has provided her a platform to help others.
She spoke last week to a group of caregivers and supporters at an Alzheimer’s Orange County fundraiser at the Rancho Las Lomas resort in Silverado.
“You’re grieving for years,” she told the crowd. “It’s not like when someone dies, and you can grieve and go through that process and have some closure and move on. You’re grieving and grieving and grieving and grieving the loss of your loved one. It’s a terrible thing to go through.”
Glen Campbell is in stage six of the disease, she said, which means he has significant dementia, cannot carry on a conversation and cannot take care of himself. He’s in a care facility in Tennessee.
The road to a care facility has not been easy, Kim said. The family chronicled the disease in a recent documentary, “Glen Campbell: I’ll Be Me,” which is available on Netflix.
“I had him in the home last summer for seven weeks, trying it one more time, and I just couldn’t do it,” she said. “He’s combative. He punched me in the eye and gave me a black eye. He’s a sweetheart. He didn’t know what he was doing.
“It just didn’t work out. Sometimes it’s not the best place for them to be at home. Sometimes it’s much better to be in a community that’s designed specifically for people with Alzheimer’s.”
While some family squabbles about treatment plans (Campbell has had four wives and eight children) have been reported, Kim was unapologetic about her approach to protecting his interests. She has been married to him for more than 30 years.
“As a caregiver, I think we all have to strive to not lose our identity,” she said. “I want to continue being me. It’s a hard thing because you get swallowed up by the disease. It’s a disease that affects the entire family. And you’re so caught up in caring for them and dealing with all the craziness and the pain and the loss that sometimes a caregiver becomes isolated. And you’re so depressed you don’t know what to do, so you’ve got to fight that.”
Before the luncheon, I talked to her privately about some of the early challenges she faced with Glen’s disease.
“It’s really weird. Sometimes I liken it to ‘The Matrix,’ ” she said. “You know when the black cat goes by and I’m like, whoa, I just saw that twice. It’s like a glitch in the matrix, so there’d be a really weird sign.
“One thing that happened early, early on, Glen asked me where something was and I said it’s in the garage, and he said, ‘What’s a garage?’ And I’m like, what do you mean what’s a garage? It’s where you keep the car. And he’s like, ‘Where is it?’ We’ve been living in this house for eight years. You know where the garage is.”
It was not long before she became concerned enough to have him evaluated.
“As time went on I just noticed nothing was ever new; nothing was ever fresh,” she said. “And then he’d start asking the same questions over and over again, repeating himself a lot. We’d go out to dinner with friends and it would be the same stories, and we’d known these people for so many years, but he’s telling them like they’d probably never heard it before.”
By 2009, he had “mild cognitive impairment,” and by 2011 he was formally diagnosed with Alzheimer’s.
The disease affects nearly 50 million people. There is no cure. After being diagnosed, people usually die within three to nine years.
“When we got the Alzheimer’s diagnosis it was scary. It was super, super scary, and I didn’t know anything about Alzheimer’s,” she said. “So I had to ask all the questions. Is this fatal? Yes. How much longer do we have? And everything is so ambiguous, and there’s really no treatment, no cure.”
Kim said that once the initial shock wore off, it was clear that Glen did not want to hide. He wanted to continue singing.
“Glen just decided that he was going to share his diagnosis with the world and let everybody know what was going on,” she said. “I think he really helped remove the stigma of getting that diagnosis, because for so many years it was an embarrassing diagnosis to get. People would just go into seclusion.”
Now, however, she does have to protect him. She does it because she feels it’s the right thing for him. She knows there are people who still want his time, but he’s not in a position to provide it.
“Eventually you do get to that point where you need to be secluded, which is where we are now because I’m trying to protect his dignity,” she said. “For us it’s been a challenge because he did open himself up, and a lot of people think that they should still have access to him. So it’s been really difficult.”
Back at the luncheon, she told the fellow caregivers that their jobs are incredibly difficult but that they should try to maintain balance.
“Try to stay positive. Try to keep your sense of humor. Lift each other up, and we’ll just keep fighting the fight until some day we put an end to Alzheimer’s.”
For more information about Alzheimer’s and the local association, visit alzoc.org/.
DAVID HANSEN is a writer and Laguna Beach resident. He can be reached at email@example.com.