Jul 7, 2015

What Glen Campbell and Family Taught Us

Viewing the Glen Campbell documentary, "I'll Be Me" felt like a collective experience as families like mine impacted by Alzheimer's gathered around their televisions to see if this documentary would show what it's really like loving someone with this disease.

What Glen Campbell and Family Taught Us

I watched with particular interest to see how his family would balance the desire to protect Glen's legacy coupled with the goal of keeping him as engaged with his familiar world as possible. I really wanted to see if they could pull that balance off, because we couldn’t. My Grandfather had had Alzheimer's and he was a celebrity too, but more about that later.

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By Mara Botonis
Alzheimer's Reading Room

From our home we sat in solidarity, like many others around the world, alternately nodding, crying, cheering and most importantly relating to the different parts of the way Glen and his family travelled on their journey while coping with this disease.

The reason I feel that this was such an important moment wasn’t so much about Alzheimer's Awareness becoming more and more mainstream as evidenced by its more frequent appearances recently in pop culture (music, movies, television, books), but because although there are more than 15 million caregivers and 5 million persons living with Alzheimer's currently in the United States.

This documentary helped us feel a lot less alone and lot more comfortable being "seen" by the eyes of America.

One of the saddest parts about having Alzheimer's affect someone you love is the isolation that often comes with it. Friends and family may retreat, unsure how to interact or relate after symptoms present themselves. Well-meaning primary caregivers may avoid certain people or situations that they feel may be over-stimulating or lead to potential embarrassment for ourselves or our loved ones. I saw both of these occur with my beloved Grandfather and it was heart-breaking.

For me, the most meaningful part of the film was toward the end of the documentary as Glen's Alzheimer's symptoms worsened. As the number of times he would forget the order of songs, names of band members or lyrics increased, what didn't diminish was his enjoyment of the experience.

As long as Glen was enjoying the activity of performing, as long as it was more beneficial than frustrating, the family allowed Glen to continue to pursue his personhood by doing all of the things that he had always done, which in this case was enjoy the art of his music, not just recording it and playing it, but performing it in front of "live" audiences.

What would be an overstimulating amount of sensory experiences to process for most of us felt like "home" for Glen and he was comfortable on stage long after other parts of his day to day activities started to become frustrating for him.

Seeing the reaction of the audiences as they cheered for Glen's successes and supported him in his moments of struggle with the loving embrace of their applause and conspiratorial giggles as Glen's sense of humor made potentially uncomfortable pauses become moments of vulnerability creating an instant sense of intimacy between him and the thousands of fans in attendance were extraordinarily heartwarming. I hope this film helps to erase some of the stigma around Alzheimer's.

My Grandfather was a celebrity of sorts too, but his national stage was later reduced to the immediate surroundings of his neighborhood.

During his career, his life of military and public service put him on a national and international platform including teaching at major universities, commanding large military bases, working at the Pentagon and even a presentation to the United Nations. Later, in the small town of just 894 people where he retired, everyone knew him, not for the accomplishments above but for the acts of service and friendship he now offered. He was a consistent presence in his church, a welcome golfer at his country club, a reliable friend to his neighbors and a generous salmon fisherman who shared his bounty.

He loved people, he loved going to church, he loved golfing and fishing and talking to people. When his Alzheimer's symptoms began to worsen, he gradually stopped participating in many of these activities. We made that decision as a family for him, but upon reflection, I don't think it was the right one.

My grandmother, his wife of over 69 years was who we deferred to when it came to what was best for Grandpa. Her love for him and desire to shield him from potential pity or judgment from others, her wish to ensure that he was spared any embarrassment and that others not "see him this way" was done partly out of her desire to protect his legacy and partly out of deference to what she felt he would’ve wanted. I hope this documentary will one day mean other families won't feel that taking loved one's with Alzheimer's out in public will cause unnecessary hurt.

Watching the grin on Glen Campbell's face as he re-joined his bandmates in performing a familiar song mid-way through after a short stumble was nothing short of triumphant and the audience's joy for him seemed absolutely authentic. I want those moments for all of our loved ones.

All of our loved ones are famous people of sorts with legacies and reputations earned over a lifetime in their own circle of influence. Whether that sphere of celebrity extends all over the world like it does for Glen Campbell, or all over our own hometown like with our loved ones, doesn’t matter. What matters is that we as a society create more dementia friendly places and people for loved ones living with the disease to interact and engage. What matters for us caregivers is that we ensure that our desire to protect our loved one's lifelong legacy doesn’t deprive a still living/loving person moments of joy.

I know how much Grandpa loved talking to people, going to Church, singing hymns, visiting with neighbors, being on the golf course and being on the water. In retrospect, there were many ways we could’ve adapted these activities into sensory experiences he might've enjoyed for a greater period of time if our family wasn’t afraid of potential consequences. I wish we had been braver, like the Campbell's.

When Grandpa's memorial service was held, it felt like the whole town crowded into the large community room of our church, so many came that it was "standing room only". They came because, like us, they loved my grandfather, and because they were his "fans" on the small town stage of his life. Like Glen's fans, I think Grandpa's would've been equally patient, understanding and encouraging with him during his struggle with Alzheimer's while he was alive.

How many extra visitors or outings would he have gotten to experience if we could've assured my Grandma that this would be a "safe" experience for his self-esteem? How many more moments of him connecting to his world might he have had, enjoying the things and people that gave him the most joy if his Alzheimer's wasn’t kept a secret until after his death?

Even now, four years after my beloved Grandpa's death, this need to hide his illness continues. As recently as last week I had a call from a relative who complimented me on all that I'm doing as an Alzheimer's advocate in Grandpa's honor before asking "But, do you have to write that he had Alzheimer's? Why can't you write about Alzheimer's in general without writing about him?" That person currently isn’t speaking to me and it hurts. You shouldn't have to risk your family not speaking to you because you are speaking out about Alzheimer's.

If Grandpa had died of diabetes, heart disease or cancer and I was writing to help other families impacted by the same, do you think I would have been asked that question? I don’t believe that the fact that Grandpa courageously battled Alzheimer's tarnishes his legacy as a bona fide hero, in fact, I think it cements it. Thankfully most of our family agrees and is very engaged in the fight to end Alzheimer's.

No one living with Alzheimer's or loving someone that has it should ever feel that need to withdraw from important parts of their life due to the difficulties Alzheimer's brings or fear of embarrassment because of it. That this type of thinking is still so prevalent reminds me of how hard we all still need to work to make the world a more friendly place for all families impacted by this disease.

The International Purple Angel program is just one example of many hard-working organizations training businesses, retailers, restaurants, civic leaders, other types of organizations first in the United Kingdom and now in the U.S. to increase awareness of Alzheimer's and help make communities around the globe more dementia friendly for persons living with the dementia and their caregivers. 

Memory caf├ęs offering fellowship for families impacted by Alzheimer's are popping up all over the U.S., whole communities such as Watertown, WI are becoming dementia friendly neighborhoods and now thanks to films like "I'll Be Me" more families might have the courage to let their loved ones take to the stages that are their own towns.

Until the day when everyone impacted by Alzheimer's can take the stage that is their own corner of the world with confidence knowing they'll be meet with love, compassion, acceptance and sometimes, maybe even applause, we need to coach our friends, neighbors and even ourselves to let our loved one's "Be Me" for as long as they can.

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