It began with James Taylor. In 1981, 24 year old Kim Woollen, a Rockette, went on a blind date with entertainer Glen Campbell, 46, to a Taylor concert in New York City. She had a vague awareness of the Grammy winning singer/guitarist but was more interested in seeing Taylor perform. Sparks flew with Glen and the couple wed a year later; a marriage that endures after 35 years and three children.
Kim brought needed stability to Glen’s life and career, only to see it threatened by an outsider that emerged in 2009 with the first signs in Glen of Alzheimer’s disease, a fatal form of dementia. Recently, Kim related her story of the past eight years of personal caregiving to a crowd at Empath Health/Suncoast Hospice in Clearwater. The talk, co- sponsored by the Arden Courts chain of memory care facilities, was supportive of family caregivers fac- ing the same challenges she’s endured.
For her husband, the early signs were evident. Repeatedly asking the same questions. Punching all the elevator buttons. Precisely parking cars at home. Getting lost on well-traveled roads. “He’d follow me around like a puppy, wherever I went, eight feet behind. If I stepped in the shower, he’d get in with me. So it wasn’t all bad,” she said, laughing with the crowd.
In early 2011, the diagnosis was clear. “It was the ‘A’ word,” Kim said. “I was terrified. I didn’t know anything about Alzheimer’s.” She learned quickly, initially caring for Glen at home in Malibu, aided by their adult children. As the illness progressed, so did the challenges of keeping him safe, for himself and
others. “When you’re caring for someone with dementia, it’s 24/7. You can’t leave them alone.” Behavioral issues like suspicion and paranoia set in, leading to physical violence. Glen once gave Kim a black eye while she was trying to dress him. “I knew it wasn’t abuse.”
An immediate issue was whether to start a five-week tour scheduled for later that year. “Glen wanted to do it. A farewell tour, to show that you can still give something of yourself, even when afflicted. It was very brave of him.” Kim feared nobody would buy tickets, but every show sold out. The tour was extended to 151 shows over 15 months, playing to fans who forgave every memory lapse or behavioral faux pas onstage, as documented in the film, “Glen Campbell: I’ll Be Me.”
The part of the brain associated with music is one of the last affected by Alzheimer’s. Campbell’s skills were remarkably evident, even if he couldn’t recall the song he’d just played. Stacey Riley, a fan, saw his Clearwater stop in March, 2012. “Awesome. I knew that, one day, this ugly disease would silence the voice and rob the fingers of their magic. But I also knew that music is the last remaining gift.”
By tour’s end, it was obvious that Glen needed more comprehensive care. As he worsened, the family moved to Nashville, where he grew more combative and was losing the ability to communicate. His doctor told Kim, “I cannot believe you are still doing this at home.” A social worker guided the fam- ily to place Glen in a memory care community. He is now 81, in the final stage of Alzheimer’s and is no longer communicative. “He can walk. He sings, but not words we understand. He doesn’t often seem to know me but he is happy. He plays air guitar and when (daughter) Ashley plays for him, he especially likes ‘You Are My Sunshine.’”
As the disease progresses to its final reality, Kim Campbell today fulfills a personal journey, speaking to families facing the same challenges she’s met head on. Her simple message: caregivers also need to take care of themselves, without shame. “Why should I feel guilt for doing what’s best for Glen, my family and me?” She also founded CareLiving.org to help others in their journey.
Her advice? “Early diagnosis is important. It gives you time to celebrate one another while your loved one can still appreciate it. People want to help. Educate yourself as to options and make the best choice you can.”
In her song, “Remembering,” Ashley poignantly looks ahead with devotion to her father: “We can talk until you can’t even remember my name. Daddy don’t you worry, I’ll do the remembering.”