If there's one thing Kim Campbell would change about caregiving for Alzheimer's patients, it's the attitude so many of us have toward transferring a loved one from home to a long-term care facility. According to Campbell, it's often the most kind, loving decision you can make. It's not a sign of failure, but one of acceptance that you need help. It shouldn't be a source of guilt.
Kim is the wife of country music legend Glen Campbell. They've been married almost 35 years and have three children together, all of whom performed with their father's band. In 2011, the couple revealed that Glen has Alzheimer's disease. "Glen did so much to remove the stigma, to open a national conversation when he went public with his diagnosis," said Kim, 58, in a recent phone interview from her Nashville home.
As the disease progressed, Kim tried to provide all of her husband's care at home, but she soon found it was too much for her to handle, even with the help of family members. "Glen became combative, too difficult to care for at home. We realized he also need 24/7 supervision," she said. She said that phase of the illness, when it was clear she wouldn't be able to keep him at home, was a real turning point. "I was in crisis," she said, "and the doctor suggested, persuaded me really, to look into long-term care."
Kim Campbell was in Clearwater recently to share with the families of Alzheimer's patients her journey as a caregiver and how she has coped with her husband's illness and the many challenges all caregivers face. But her primary goal was to help alleviate the guilt that so often haunts caregivers: guilt for needing a break, guilt for accepting help, guilt for taking time for themselves, guilt for even considering a nursing home.
"They struggle with the loved one who always said, 'Don't ever put me in a home,' " said Kim, who understands how that can weigh heavily on family members. She thinks that these fears are based on some commonly held perceptions that care facilities are dark, dismal institutions, which isn't always the case.
Today you'll find memory care centers that specialize in caring for residents with Alzheimer's and other forms of dementia. "These are engaging, vibrant communities offering music and art programs, pet therapy, book clubs, social events and support for caregivers and family members," Kim said.
She tells people that she didn't place Glen in a home or facility, but rather, "our family joined a memory care community. It's my community, too," she said. At home, patients are more likely to be isolated with only the television for diversion. In a memory care home there is much-needed social interaction, opportunities for exercise and therapeutic activities that may help slow progression of the disease and give families more quality time together.
Glen, who is now 81, has been in a memory care community in Nashville for about three years. Kim says he's in the later stages of Alzheimer's. While he isn't able to carry on conversations, she still sees glimmers of his spirit and personality. "It's a strange predicament to be in," she said. "When someone you love has Alzheimer's disease, the body is still there and their spirit is still there, but their minds are slowly slipping away." She's grateful for the support of other caregivers at Glen's memory care community and the ones she has met on the road. "I started connecting with these people here at home and around the country. I've made friends in a lot of different states. It's been a lifeline to me," she said.
Her faith has been a lifeline, too. Kim said she prays every day, asking to be a blessing to someone. A former professional dancer, she also exercises regularly, which she says helps with the depression that many caregivers experience. "I take ballet three times a week, I take Zumba, I go to the Y, I try to take care of myself."
She also got involved with Alzheimer's advocacy and launched careliving.org, a website where she shares experiences and family news but also gives pointers on how to pick a good home-away-from-home for a loved one. "We showcase amazing, cheerful, state-of-the-art memory care facilities across the country," she said, "to educate caregivers on what to look for when considering long-term care options."
And, Kim travels the country speaking at senior centers and memory care homes, sharing her Alzheimer's caregiving story. She talks a lot about why it's important for caregivers to let go of guilt. She encourages them to accept offers of help, to take breaks, to enjoy life, to remain positive, to care for themselves so they can be there for their loved one. Most of all, she tells them it's okay to investigate long-term care. "I tell them, never feel guilty about doing what's best for your loved one, what's best for yourself and your family."
To learn more about the Campbells' Alzheimer's journey, watch the documentary, Glen Campbell: I'll Be Me. It chronicles how he and his family adjusted to his diagnosis while on the road for his Goodbye Tour.
Glen Campbell released his final studio album, Adios, this month. It was recorded between 2012 and 2017.
Contact Irene Maher at [email protected]