"I have a black eye, but I'm hanging in there." Kim Campbell, tells me. "Caregiving is hard," she says. "I don't know how people do it."
Kim's husband, legendary country singer, Glen Campbell, rocked awareness when he and his family let the world know their secret. Together they toured the country after bravely announcing he had Alzheimer's diseaselen playing his heart out with his musically talented children: son, Shannon and daughter, Ashley, by his side. Napa Valley was their final stage, Glen's last encore. By that night, his struggle through the plaques and tangles plaguing his brain had become too difficult. Kim was by her husband's side through the journey, as she continues to be for Glen today.
I first met Kim and Ashley Campbell in Naples, Florida at the grand opening of a state-of-the-art Alzheimer's facility, The Villas. We talked about the cruelty of the disease, the difficulties of providing care, and different techniques to improve quality of life. Ashley talked about Glen's progress and how life was going with their family.
One of the things I asked Ashley and Kim was if Glen was exposed to art therapy in his care facility in Tennessee.
Many people presume that making art and art therapy are the same thing. They are not. While creating art can be therapeutic, art therapy is a specific, structured process focused on using art to articulate thoughts and feelings with the guided help of a registered Art Therapist. Art therapy is about guiding the creative process to help lead to meaningful interpretation of the art. With advancing Alzheimer's, when a person is losing the ability to explain a thought process or otherwise communicate, art therapy can be a particularly effective tool.
Talking about art, we talked about the difference between art therapy and art instruction; how painting can sometimes reawaken memories. Ashley perked up at the reference and told me about a painting session Glen had with actress, and family friend, Jane Seymour, at her art studio.
"He didn't' paint anything really," Ashley said, "it was more just putting color on the canvas, but he did use his favorite color: blue."
I smiled, "that's a part of art therapy."
Kim said, "he's always loved colors; one time he took out his black cowboy hat and tied a red ribbon around it. Now, he loves bright colors and having brightly colored shoelaces. If he sees someone without bright shoelaces, he'll want to give them his."
We talked more about color, creativity and Alzheimer's. Kim told me that as his Alzheimer's progresses; Glen's fascination with bright colors has increased.
She wondered aloud, "As the brain changes, I wonder if that's what's happening; how they see the world, like children."
During that evening's event in Naples, Kim spoke about her life as a Radio City Music Hall Rockette, how she met Glen, and their family's faith and love of music. She also bravely shared how Alzheimer's has shaken their world. They decided to come out because they wanted to raise awareness, break down the stigma of the disease and advocate for better care services.
There was an emotional buzz in the room that night. For many of us, it provoked a desire to do more and begged questions of how we can do it. The short answers are always the same: do more ... help raise awareness, help raise funds for research efforts and contact your government, or roll up your sleeves and help people with a hands-on approach by donating your time.
While we search for a cure, we need to also find ways to address the costs, financial and emotional, for those living with the disease or caring for those who are.
It's a distressing fact, but for persons with Alzheimer's the cost of care services can double, if not triple, compared to persons without dementia. From hospitals, adult day stays to dementia care facilities and services, Alzheimer's disease is big business, and these entities know it. Not only is it taxing economically, the psychological devastations are impressive.
It's another poignant fact that depression, anger, frustration, guilt and shame are common among caregivers, even with the support of family members. Like most scenarios in caring for persons with advancing Alzheimer's, life becomes increasingly difficult. Family disputes on how one should be cared for is widespread, and the decision to place a loved one in a facility compounds raw emotions that are already in place. Not to mention the challenges of affording care services, and finding ones that provide integrity.
Kim shared her vulnerability and feelings because she understands that many families will probably relate to her and be assured, "You are not alone." She was open in talking about her depression. She told us she cried a lot.
"I was very depressed," she said
With mixed emotions, Glen Campbell was placed in an Alzheimer's care community in Tennessee.
Kim tours the country, screening the enlightening documentary film of Glen Campbell's, I'll Be Me while speaking to audiences about Alzheimer's. She's out to raise awareness, and offer inspiration. She's asking us to demand higher standards in research efforts and the implementation of dignified activity programs in care communities. Where does one find hope and encouragement from a society that tends to stigmatize and ostracize? We follow Kim's brave lead.
Several months after the Naples, Florida event Kim and I spoke on the phone. She was nursing a black eye and hanging in there emotionally. Glen was back at their home as Kim decided that was a better option for his care. The facility Glen was at did offer an array of programs, but he was rapidly progressing, and the family wanted him home.
Like art therapy, music therapy can be a powerful tool. There is good science behind validating the affects of music on memory. The neurologist in the, I'll Be Me documentary noted that the music is what probably kept Glen going for as long as he did while on tour. Talking to Kim, I asked her how was music affecting him now through his progression? Does he enjoy listening to it? Did he recognize his own music?
"He is unable to play his guitar, and no, he doesn't recognize his music, but he'll sing a lot in following along with the tunes and melodies," Kim said. "He has severe aphasia and uses unrelated words that don't make sense."
But their house was always filled with music, and as a family, their music and faith remain strong bonds.
As a wife and caregiver, Kim is challenged; like the millions of other spouses who care for their own. She does not attend any Alzheimer's caregiver support groups, but she does have a few close women friends that she regularly talks to who can empathize. Kim stresses the importance of having supportive connections.
"I have my children, but they are starting their lives and I want to encourage their growth." She continues, "It's hard, you can't do this alone, you need help and you need time for yourself to recharge."
Kim continues to dance and find sustenance in her lifelong passion. She stays positive, even through the tears.
Having support groups, whether it is online, in-person or over the phone are vital. There are times when you want to scream, cry, shut down and go away. Emotions are a part of being human, but assurance, resources and knowledge are essential tools any caregiver needs in maintaining their own health and happiness.
"When I try to clean his mouth, wash or change his clothes, he'll yell and hit." She tells me. "There are the sweet and kind moments though, even in times when he's highly agitated, he'll look at me and say, "I love you. God bless us all."
*Glen Campbell's paintings can be found on Facebook through, The Art of Glen Campbell.
Kim's husband, legendary country singer, Glen Campbell, rocked awareness when he and his family let the world know their secret. Together they toured the country after bravely announcing he had Alzheimer's disease.