During the late stages of her husband’s struggle with Alzheimer’s disease, Kim Campbell said she “truly feared I was going to become the second victim of the disease.”

She shared some poignant and personal stories from her 34-year marriage to Glen Campbell, the famed singer and songwriter who passed away with Alzheimer’s disease in 2017, in the closing session of the 2020 National Investment Center for Seniors Housing & Care Fall Conference, which went virtual this year due to the pandemic. 

Bob Kramer, founder and president of Nexus Insights, talked with Kim about lessons learned and what advice she would give to those caring for someone with dementia. She also shared that she recently published “Gentle on My Mind: In Sickness and in Health with Glen Campbell.”

While in the early stages of the disease, Glen embarked on a farewell tour with Kim and other family members that would be preserved in the 2014 documentary “Glen Campbell: I’ll Be Me.” 

Kim also had shared her past experiences and future plans related to being a family caregiver in a talk during the 2017 National Investment Center for Seniors Housing & Care Fall Conference and launched CareLiving, a lifestyle guide and social movement designed to support and advocate for caregivers.

After hearing from so many people that her efforts to share Glen’s story made them feel “seen,” she decided to share “the rest of the story” in her book.

During the late stages of Glen’s disease, Kim said, she was “desperate, tired and fatigued.” She read statistics about what happens to caregivers, including that 40% of caregivers die before the one they are caring for succumbs to illness.

“It was important to offer a voice of hope and positivity,” she said of her book. 

Kim shared again how she and family members initially tried to care for Glen at home. When she finally met with a neurologist to examine her husband, he introduced her to a social worker who opened her eyes to the field of long-term care and the various options available.

“I had never considered any other option than taking care of Glen on my own, as his wife in our own home. It almost felt like a breach of my marriage vows to think of any other option than that, but I was in crisis,” she said. “I didn’t know memory care communities even existed.”

She said she now advises families not to wait until a crisis to explore options, and she encourages them to educate themselves about the various communities and the services they offer, “because they are all different.”

Too many times, Kim added, loved ones are “relegated to the back bedroom of a house” with one caregiver and no socialization or activities. 

“You should not ever feel guilty about doing what’s best for your loved one, what’s best for your children, and what’s best for yourself. You’re important, too,” she said. “The quality of life that being a part of a community can offer is so superior to that.”

Kim said she didn’t “place” her husband in a “home” or “facility.”

“Our family joined a memory care community,” she said. “It was my community, too.”