Widow of Grammy Hall of Fame & Award-Winning Music Artist Glen Campbell, Alzheimer’s Advocate
Kim Campbell was married to Grammy Hall of Fame and Award-winning music legend Glen Campbell for 34 years until his death from complications of Alzheimer’s disease (AD) in August 2017, at age 81.
Glen Campbell was diagnosed with AD in January 2011 and entered a long-term memory care community in 2014. In between, he toured the United States performing with his band, which included their children Cal, Shannon, and Ashley. The tour was captured in the acclaimed 2014 documentary Glen Campbell: I'll Be Me, directed by longtime friend James Keach. The film recounts the details of Glen Campbell’s Alzheimer's diagnosis and how it affected his musical performances during the final tour, as well as his neurologists’ observations about the power of his musical ability to sustain cognitive performance for longer than expected.
Kim Campbell will deliver the keynote address, on her experience as a caregiver, during the ANA2019 Presidential Symposium on October 13, 2019, in St. Louis. A public speaker and advocate on many fronts, Ms. Campbell is founder of the Kim & Glen Campbell Foundation for the research of music as medicine; author of CareLiving.org, a blog providing resources and inspiration to other caregivers; and an honorary faculty member of the University of Maryland, Baltimore’s Erickson School, connecting aging services research with industry leaders. She is currently at work on a memoir to be released for Mother’s Day 2020.
In advance of her appearance at ANA2019, the ANA interviewed Ms. Campbell on the insights she has gained through being a caregiver and AD advocate.
“You know they don't know what they’re doing so you can't take it personally. But it's just heartbreaking.”
Q. What was the hardest part about being a caregiver for someone with Alzheimer's?
When it's a husband and you've always had this strong man that protected you and took care of you and was your best friend… to see him losing all of his faculties and becoming frustrated and losing his independence is absolutely heartbreaking and lonely and depressing. Glen went through a lot of emotions early on, but then he got to a point where he was unaware of what was going on.
One of the hardest things for me going through it was trying to care for him in the later stages when he had lost the ability to understand language or communicate verbally. He had aphasia. When I would try to bathe him or change his clothes, he would get physically violent with me. You know they don't know what they are doing so you can't take it personally. But it's just heartbreaking.
Q. When Glen was in long-term care, what was it like being a caregiver from the outside?
It was a huge blessing to everyone involved, to our entire family, and to Glen. Long-term care for memory care is very specialized, and it's really evolved over the past decade or so. There are all kinds of activities that are therapeutic like art therapy and music therapy, horticulture, movement, and pets. But being in a community and having socialization and having a sense of freedom is so good for someone with dementia. I had a much bigger care team. I had professionals, I had people that were able to work together to actually get Glen bathed, which was always such a huge challenge. I was able to get sleep, which I sorely needed. I was still there every single day, eating with him and giving him all the love and affection that he needed. I made friends with other wives who had husbands there, which was a great support system.
There's such a stigma around long-term care, and that's a horrible thing because for most families it's a last resort rather than your first choice. But once I found out everything that it had to offer, I wish I had known about it sooner. So many people get relegated to the back bedroom and there's no stimulation or quality of life. You have to do your research and explore. There are many good ones out there.
“Terminology is so important. What I say is ‘our family joined a memory care community.’ It’s not a betrayal, I was doing my job.”
I always say I didn't put my husband in a home, I didn't “place him” somewhere. Terminology is so important. What I say is “our family joined a memory care community.” Our whole family joined. It’s my community too. When you frame it that way, it totally transforms your emotional response to it. It’s not a betrayal, I was doing my job. I'm doing what's best for my husband, what's best for my children, what's best for me, keeping the family together, keeping us all healthy, and giving Glen a better quality of life than he would have had at home.
Q. What does the medical community need to know from the caregiver's perspective and how could they do a better job to prepare or support caregivers?
I think the main thing is making sure that caregivers have some kind of a plan. First of all, when they get that diagnosis, they've got to get their affairs in order as soon as possible while the person with Alzheimer's is still competent enough to help make decisions. But then, too, just knowing the options. I was a very well-connected person, and living in a fluent and intellectual community, and I didn't know anything. It wasn't until a doctor here in Nashville looked at me and he could tell that I was a basket case. He said, "I can't believe you're still trying to do this at home. I'm going to have a social worker call you tomorrow." That scared me to death because I didn't know that memory care communities even existed. I thought he was talking about some kind of nursing home. I just had all these horrible images flooding through my mind. I just was really uneducated about the options.
Also important is having a support group. That happened organically for me because I was involved in advocacy and fundraising to help fund research to find a cure. I met people all around the country who were in a similar situation. That was such a lifeline to me because no one understands it except other people that are going through it.
Q. What did the experience of going on tour and making Glen Campbell: I'll Be Me, do for your family?
All three of our children are fabulous musicians. In fact, our son Cal is going out on tour with Beck. And Ashley is a very famous banjo player, singer-songwriter. She's touring the UK right now. And Shannon is finishing an album.
They were all on stage with Glen. But at the same time, they weren't developing their own careers or relationships because they were so wound up in taking care of Glen. Then after the film, they moved in with me and shared the responsibility of caring for him. I think they're eight years behind their peers in terms of getting their careers going. None of them is married yet. Cal, our oldest one is 36, and then Shannon is 34 and Ashley is 32. I think caregivers kind of get frozen in time because everything stops to care for that loved one.
We're all recovering now, we're bouncing back. And no regrets. We certainly wouldn't trade it for the world. It was a precious time, as well as a heartbreaking time. And it developed character in all of the kids I think.
“I'm proud of my husband for opening up a national conversation about the disease and helping remove some of the stigma surrounding it and helping caregivers feel seen and heard.”
Q. What impact has the film had on awareness of Alzheimer’s disease?
Before our film, no one wanted to talk about it. It's a little embarrassing to families when someone is losing their competency. But Glen was just so open and honest about it, and it gave people permission to offer to help, to ask questions, and that takes away the awkwardness.
The film is very educational, uplifting, and entertaining. And it's one of the funniest films you'll ever see dealing with such a heartbreaking issue. I'm proud of my husband for opening up a national conversation about the disease and helping remove some of the stigma surrounding it and helping caregivers feel seen and heard.
Q. What is the focus of your work now?
I founded the Kim & Glen Campbell Foundation, which is dedicated to funding research and advancing the use of music as medicine. I was inspired by the work of a neurologist named Daniel J. Levitin. Before he became a physician, he was a record producer and musician, and he worked with a lot of famous artists — Joni Mitchell, Blue Öyster Cult, Santana. He was so fascinated with music and how the brain interprets it and what makes one musician better than another, that he quit being a record producer and went back to school to become a neuroscientist. He wrote a New York Times Bestseller called This Is Your Brain on Music.
It's a very scientifically technical book about music and the brain, which fascinated me while I was on tour with Glen and watching this miracle every night on stage. Offstage, Glen was functioning, but he was very forgetful. He asked the same questions. "Do we have a show tonight?" Yes, we do. "Oh, what time?" 7 p.m. "Okay great." Then a few seconds later, "Do we have a show tonight?" But the minute he heard the introduction to Gentle On My Mind, it was like he was back. He walked on stage and just did a tremendous show. When he played guitar, it flowed out of him effortlessly without him even having to think.
Our foundation hosted our first golf event fundraiser last year and we're doing it again this year in October at the Arizona Biltmore, where we lived and raised our kids. We raised about $100,000 last year and were able to give our first grant to Daniel Levitin from that, so we were very excited. We’re also working with Dolby and Universal Music Group to fund the building of an immersive listening room that we'd like to build at a non-profit memory community, which would be part of the research arm of the foundation.
“When he played guitar, it flowed out of him effortlessly without him even having to think.”
Q. Have you also been involved in political advocacy work?
Yes. Our film has scenes from our show for the Library of Congress. We met with all kinds of leaders. Our daughter Ashley testified, which you can watch on YouTube. We met with Nancy Pelosi and Ed Markey and an array of others. I think at the time we were doing our documentary, the NIH was only spending $400 million on all neurological disorders … in comparison to cancer research getting $6 billion and AIDS $3 billion.
With Us Against Alzheimer’s, I recently went to Washington, D.C. and visited some of our Tennessee senators and congressmen. We go to Capitol Day every year and meet with people and there are always different bills that they're trying to get passed. One would enable full-time caregivers who have to quit their jobs to continue getting points for Social Security. Another would help fund transportation for caregivers who have to travel with someone who's participating in a clinical trial. We advocate for things that seem small but are very important, as well as for increasing funding for the research.
Q. Have you seen evidence of progress since you started working on this issue?
I've seen progress in the development of memory care communities. I have traveled the country and visited many of them, and I see quality of care rising and becoming more evidence-based and more therapeutic. I think that's encouraging that there are good options.
I see progress legislatively. There's a lot more funding now for Alzheimer's research. [The NIH is expected to spend $2.3 billion on Alzheimer’s research in 2019.] But heartbreakingly, there's not been any progress towards finding a real treatment or cure. But I guess every failure is one step closer to finding what will work.