Mere days after announcing that he would be taking a, "leave of presence," from his duties as an award-winning film critic, Roger Ebert, 70, passed away after a decade-long battle with cancer.
Ebert will be best known for the massive collection of intellectual musings on popular cinema he leaves behind; a testament to his 46-year-long tenure as a film critic.
While his thoughts on Citizen Kane are indeed profound, it is Ebert's approach to the challenges he faced in his final years of life that should be most resonant to the millions of men and women tasked with taking care of ailing elderly loved ones.
After all, many family caregivers share a surprisingly similar struggle with Ebert—the loss of their true voice.
Silence isn't golden, if it's forced
What first began as thyroid cancer quickly spread into Ebert's salivary glands and jaw bone. Multiple radiation treatments and a series of failed jaw reconstruction surgeries caused his carotid artery to rupture seven separate times. (A doctor once expressed his surprise that Ebert had survived all of these ruptures—given that most people don't even survive one).
And, all of that trauma eventually took a toll.
In 2006, four years after being diagnosed with cancer, Ebert's jaw had to be removed, costing him the ability to eat, breathe and speak on his own.
Though they lack the dramatic physical limitations of Ebert, caregivers too can find their voices and opinions become muted, even non-existent, once they begin taking care of an elderly loved one.
An endless parade of difficult doctors, drawn-out phone calls with health insurance companies and confusing searches for senior housing can drown out even the strongest caregiver's voice.
Many individuals also find themselves in a state of forced silence when dealing with issues more close to home, such as having to hold their tongue when a dementia-stricken loved one acts out, or a family member refuses to help.
According to Ebert, this loss of voice—no matter how it happens, or how reversible it is—causes a person to change in a profound way.
"The act of speaking or not speaking is tied so indelibly to one's identity as to force the birth of a new person when it's taken away," he says in a 2011 TED Talk (see video below) in which his wife and two friends (fellow TED presenters, Dr. Dean Ornish and educator John Hunter) act as substitute orators.
Voices recaptured and identities reclaimed online
Ironically, being rendered permanently speechless didn't steal Ebert's voice—it strengthened it. It forced him to forge a newer, more powerful identity.
"I am here as a man who wants to communicate," Ebert, via Hunter's voice, proclaims.
His argument: even though circumstance may steal our ability to speak, technology can give us all a chance to be heard.
"On the web, my real voice finds expression," he says. "Because of the digital revolution, I have a voice and do not need to scream."
This same revelation often strikes caregivers when they come across web-based resources, such as online caregiver communities, forums and support groups.
In these insulated, intimate gatherings, caregivers can translate their silent screams into digital discussions, gaining valuable tips, advice and support from one another to help them navigate the muddy waters of caring for their elderly loved ones.
Here are a few caregivers who were able to reclaim their voices in the Support Groups on AgingCare.com:
- "This website and the members have helped me to handle an otherwise overwhelming, heart-wrenching situation," says peeweedeb.
- "Thank you for this outlet that allows me to vent and say what I really feel. When I need to complain or ask a question, it can be someone who has been there and done that," BonnieO comments.
- "Thank you for understanding when I couldn't understand what was going on around me, much less in my heart. You've all put a burst of energy back into the caring," says tj527.
A digital community, no matter how tight-knit won't make caring for an elderly loved one magically easier, but it can alleviate some of the emotional burdens and caregivers the freedom to find themselves again, even in the midst of their struggle.
Learn more about how caregivers can find support from an online support group.
As Ebert points out, "Online, everybody speaks at the same speed."