By SUSAN LEATHERS
Special to Home Page Media Group
In 2011, Glen Campbell and his family told the world the multi-talented singer, actor and former TV host had Alzheimer’s disease.
On Thursday, his wife told those attending “An Evening with Kim Campbell” in Brentwood who are dealing with similar diagnoses to share their own stories – and to never feel guilty about asking for help.
“When you are open and honest with people with what you’re going through, they just want to support you,” Kim Campbell said during her 45-minute talk. The event, sponsored by the Morning Pointe Foundation, was hosted by Brentwood Baptist Church.
The 81-year-old entertainer’s Alzheimer’s journey has been well documented, most notably in the 2013 Academy Award-nominated documentary “Glen Campbell … I’ll Be Me.” The film incorporates both stage and behind-the-scenes footage from his final “Goodbye Tour” that started right after his diagnosis.
More recently, Kim Campbell has shared their very personal story through the lens of the caregiver. In early 2015, she created an online blog, careliving.org, to deal with the depression that impacts many caregivers. The blog includes posts by guest contributors and often focuses on faith.
“We’re all part of the same club. We all need each other,” she said. Most importantly, “You need to keep living while you’re caregiving. You need to be happy. You need to take care of yourself.”
That was the message Kim Campbell conveyed over and over again as she shared her family’s story at the latest in a series of “Evening” events.
The long goodbye
When Glen Campbell was officially diagnosed, after several years of exhibiting increasing cognitive impairment, Kim said she “knew nothing about Alzheimer’s.” One of her first questions to his doctor was, ‘Is it fatal?’”
“When the doctor said ‘yes,’ I was in shock. I had no idea.”
He told her the average life expectancy is two to eight years following diagnosis though some patients have survived 20 years and more.
“They don’t call it the long goodbye for nothing,” she told her audience of several hundred in Brentwood Baptist’s main sanctuary.
Just prior to the diagnosis, Glen was planning the Goodbye Tour with his family, manager, music producers and others. Kim said after learning the news, her mind filled with worries and reasons they should cancel it.
“Glen said, ‘I feel fine. I want to do it.’
“I said, ‘Honey, what if you mess up?’
“He said, “I’ll just tell people I have Alzheimer’s.’”
And he did.
The Goodbye Tour, originally scheduled for five weeks, continued for almost two years.
“People came out to support him. He was like Rocky with a guitar,” Kim shared. And the fans that filled sold-out arenas kept him going, “He just fed on that.”
“We just had a blast out there. That’s another benefit of an early diagnosis, you’ve got that time to just surround yourself and just absorb every ounce of happiness that you can with your family. And that’s what we did.”
“But all good things must end,” she continued. At the close of 2012 it became obvious it really was time to say goodbye to the stage.
She credits the tour with slowing down the disease’s’ progression in her husband of 35 years.
“Music really did help him plateau for a lot longer than he otherwise would have,” she said.
After the tour, the disease progressed quickly from the middle to late stage.
The move to Nashville
In 2013, Glen and Kim moved from Southern California to Nashville to be closer to son Shannon and daughter Ashley who had earlier relocated to pursue music careers.
Together, and with the help of in-home caregivers, they cared for Glen. Kim told her audience she thought he would stay there the rest of his life.
But then it became too hard. Glen became combative, a common Alzheimer’s symptom. “And when he got agitated, he got really agitated, and that was really scary,” Kim admitted. It took intervention by Glen’s doctor and a Vanderbilt social worker, though, to get her to admit she and the family couldn’t care for Glen at home 24/7 any longer.
The social worker told Kim she had three options: Adult day care, temporary residential respite care or permanently moving Glen to a memory-support community.
She toured many Nashville-area facilities to find the best solution. “And, of course, anywhere you go there is good and bad.” She also felt guilty considering any of the options. Ultimately, she decided to try an adult day care.
On the first day, Glen wouldn’t leave the house without “his little, child-size guitar.” Ashley had to help Kim transport Glen to keep him from trying to get out of the car while it was moving.
By the time they arrived, she was a nervous wreck. But the minute they entered, “He thought he was at a meet-and- greet. He started passing out guitar picks with his name on them.”
Kim went home and “just cried.”
When she went back to pick him up, she had a nice surprise.
“He wasn’t mad; he didn’t miss me. It was me that was all stressed out and worried.”
While day care offered respite during the day, nights at home were still a challenge. Glen wore a motion detector so the family knew where he was if he wandered. He got up multiple times during the night. The caregivers took turns staying up at night to make sure he was safe.
All were getting exhausted.
One night when Ashley had night duty, Kim couldn’t sleep. She heard Glen getting up and down and finally got up to check on things. She found her daughter huddled in the hallway crying .
“I’m 27 years old, living at home and taking care of my dad AND my mom,” she told Kim.
That’s when Kim decided a respite stay would be good for everyone.
Kim and Ashley spent their first “free” night at The Station Inn, Nashville’s iconic bluegrass venue. Family friend Carl Jackson was playing and invited Ashley on stage with him.
Before turning in that night, Ashley told Kim, “Mom, I’ve decided I am not going to feel guilty for feeling happy.” The statement hit Kim hard.
She realized the toll caregiving was having on the entire family.
“Glen would have never wanted that,” she said.
Working through the sadness together
Glen’s respite stay became a permanent one.
“I always say I didn’t put my husband in a memory support community, I didn’t place him somewhere. Instead, our family joined a memory support community. It’s my community; it’s my daughter’s community. Now we have a big team taking care of Glen.”
She’s bonded with other spouses and caregivers at the facility.
“It’s become my family,” Kim said.
Glen Campbell, who turns 82 on April 22, has reached the final stages of the disease. He can no longer talk or take an active role in the many “engaging and stimulating” therapies offered.
“But you know what? He just benefits from being with people,” said Kim, who describes Glen today as content and cheerful. “We’re just working to find joy in the midst of sadness and doing the best we can.”
She credits her faith for helping herself survive.
“It’s so easy to become the second victim. And without the Lord, I surely would have,” she said.
In closing, Kim encouraged all of those attending who have a family member with dementia to look for help. “You can’t do it alone.”
She acknowledged that every Alzheimer’s situation and patient is different. “You just have to explore the options and see what is right for you.”
Ashley and Shannon Campbell, who starred along with their father and brother Cal on the Goodbye Tour, opened the evening with the late John Hartford’s Gentle on my Mind. Campbell recorded the now-classic song in 1967 and it received four Grammy Awards the following year. It also was the theme song of The Glen Campbell Goodtime Hour TV show that aired between 1969 and 1972.
The siblings also performed “Remembering,” an original song Ashley wrote in her father’s honor: