Ashley Campbell vividly remembers the day when she first began to notice the changes in her father, country music legend, Glen Campbell.
She was in high school and had invited her friends over to watch a movie - Lord of the Rings. Her father poked his head in, mid-film, to say hello and inquire about what they were watching. Ashley told him and he left.
He came back several minutes later, asking the same question and receiving the same answer. The scenario then repeated itself for a third time.
As she recalls the episode, Ashley, now 26, admits initially attributing her father's behavior to his characteristic unconventionality. "My dad's always been a little eccentric," she says, her voice tinged with deep affection. "I didn't think much of it, at the time."
Eccentricity has long been considered the purview of the highly-creative. And Glen, an actor, former television show host, and six-time Grammy winner, certainly fits the bill.
Unfortunately, it wasn't the crooner's creativity that was driving this new behavior.
Though the Campbell's didn't know it at the time, Glen was beginning to show signs of dementia - Alzheimer's disease, to be exact - a degenerative brain condition hallmarked by memory loss, confusion and hallucinations.
The show must go on
Glen received an official Alzheimer's diagnosis in early 2011. He and his family chose to go public about his condition later on that year.
Ashley says she was too young to have been involved in the family's decision to announce her father's diagnosis (and thus, brave the staggering stigma that surrounds Alzheimer's disease). But she states that the choice wasn't a difficult one for her parents to make, given that Glen was continuing to record and planned on touring at least one more time. "He was still performing and we didn't want people to attribute any of his behavior to drugs," Ashley says.
Glen showed few public signs of slowing down as he embarked on his farewell tour and released a new album, entitled: "Ghost on the Canvas."
Ashley, a budding musician in her own right, got to accompany Glen on his final tour - which ended in December 2011.
During the tour, Ashley, her brother, Shannon, and their band, "Victoria Ghost," opened for Glen. Once the "Rhinestone Cowboy" took to the stage, Ashley could be seen standing just to the side of her father, her fingers deftly picking on a banjo, or flying across the keys of a keyboard as part of his backup band.
She says that the experience was invaluable, both personally and professionally.
"I can't even put it into words how priceless it was for me to be able to perform with my dad. It was a ridiculously valuable experience for me as a performer. But, more importantly, it was so great to watch my dad doing what he loves. Being able to witness the legacy he created and to see all of the fans who love and support him - being caught in that crossfire of encouragement was amazing," she says.
Her presence also served as an anchor for Glen, whenever he flubbed a note, or lost track of what songs he'd already played. During these rare instances, Ashley was ready to step in and diffuse the tension, gently guiding her father back on track, whenever he lost his way.
She also acted as a stand-in spokesperson for her father whenever he would step into the public eye. It is a role that Ashley seems uniquely suited for, which makes it even more amazing when she admits that she fell into it naturally. "It wasn't really a conscious decision. It's just my way of being supportive of him and productive at the same time," she says.
Ashley's mother, Kim, is Glen's other rock.
Kim acts as Glen's primary caregiver and Ashley moved back in with her parents several years ago to help out. Together, the two of them form a formidable team, each filling in whenever they're needed. "She leans on me, I lean on her, we lean on each other," says Ashley. "No one can do this alone."
A different kind of legacy
The Campbell's decision to tell the world about Glen's struggle with Alzheimer's, combined with their unwavering support has enabled Glen to be transformed into a generational icon of a much different kind than he's used to being.
Glen's candor, combined with his dogged determination to continue to pursue a lifelong passion of performing, seems to have converted him from pop culture icon, into a symbol of the baby boomer generation's ongoing fight against the stark realities of a disease that has no cure and no truly effective form of treatment.
It's this last truth - the lack of a functional cure for Alzheimer's - that the Campbell's are banding together to help change.
Like many newly-anointed caregivers, Ashley and her family initially had no idea of the scope of the Alzheimer's epidemic, nor the size of the community of people caring for loved ones with the disease.
"After the announcement, there was this amazing outpouring of support from the fans and their families," she says. "Meeting so many people who were affected by the disease was a huge incentive for us to become advocates."
Glen, Kim and Ashley all recently traveled to Washington D.C., where Ashley gave a moving testimony about her father's struggles with Alzheimer's to the Senate Special Committee on Aging. During her oration, she stressed the need to funnel funds into finding a remedy for the disease.
With her parents sitting nearby, Ashley spoke frankly of Alzheimer's effect on her father's memories.
"Now, when I play banjo with my dad, it's getting harder for him to follow along and it's going to get harder for him to recall my name," she says, her voice breaking a bit as she admits the blunt truth about what the future might hold, "It's hard to come to the realization that someday my dad might look at me and I will be absolutely nothing to him."
In those moments, it seems as though Ashley herself serves as a stand-in for every person who has ever had to witness a loved one slowly succumb to the effects of Alzheimer's.
When asked if shouldering such a heavy burden of responsibility is difficult, given her young age, Ashley politely demurs. "You kind of learn to take each day as it comes. It's a lot easier to do something like this when it's for someone you love. It's not hard - it's an honor."
Coping by coming together
As hard as the journey ahead is likely to be, Ashley and the rest of her family aim to make the most out of the time they have left with their beloved patriarch.
"Obviously it would be better if he didn't have it," she says of her father's condition. "But, it helps to try and put a positive spin on something you can't change. I've gotten to spend so much time with him since we started touring together. I've learned not to take any moment for granted. To me, he's not just an amazing musician - he's an incredible dad. Thankfully, I've gotten to spend time with both."
Indeed, Ashley was there when Glen received his Lifetime Achievement Award at the 2012 Grammy's. She's performed with him in front of thousands, played duets with him in the privacy of their home, and she's pledged to be there for him, until the end.
When asked what she would say to the countless men and women caring for family members with Alzheimer's, Ashley Campbell recites the most important (and most often overlooked) tenant of the caregiver credo: "Don't ever think that you should, or could, do this alone. You have to find a support system because there are times when you can't do anything but lean on one another. No one should have to go through this alone."
(Source: AgingCare.com, 4 June 2013)
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