Caregiving is the ultimate act of love. While navigating dementia and relationships can be challenging, the act of taking care of a loved one can be very rewarding. In between the difficult days, caregivers can still find joy in tender moments, in building stronger bonds with their loved ones, and in making a difference in their lives each day.
Joygage itself was inspired by the love and sacrifices of dementia care. Founder and CEO Craig Fowler’s father Don cared for his mother Wanda for seven years, ensuring she received the constant interaction to keep her occupied and happy.
Lao Tzu once said, “Being deeply loved by someone gives you strength while loving someone deeply gives you courage.”
Joygage shines the spotlight on dementia and relationships and honors couples who have bravely faced the challenges of dementia together. Let’s hear and be inspired by some of their stories.
Tony Bennett and Susan Benedetto
Tony Bennett is one of the last surviving legends of the jazz and crooner era. His family’s revelation of his longtime struggle with Alzheimer’s disease last February 2021 was a shock to many. Diagnosed in 2016, he continued to record songs and deliver powerful live performances until his last show before the COVID-19 lockdown on March 11, 2020.
Susan Benedetto, Tony’s third wife, is 40 years his junior, and his main caregiver. Susan met Tony for the first time at 19 at one of his concerts in San Francisco. She sent a note backstage asking to meet him. Tony then asked her to be his date for the night.
The couple dated for 20 years before tying the knot in 2007. Susan and Tony both share a passion for the arts and education. In 2001, they founded the Frank Sinatra School for the Arts located in Queens, New York.
Susan says Tony was already showing signs of Alzheimer’s disease two years before his diagnosis, during rehearsals and recordings with Lady Gaga, his mentee, and collaborator. They are following up the 2014 album Cheek-to-Cheek with a new LP which they recorded between 2018 and 2020.
To reduce Tony’s exposure to COVID-19, Susan had to let go of their assistant, leaving him in her constant care. Isolation can take its toll on people living with Alzheimer’s and/or dementia and relationships are key to maintaining their well-being. Susan’s support and devotion was instrumental in Tony’s well-being and high function.
Susan’s background as a teacher may have also helped in supporting him through his treatment and daily care. To aid in the prevention of cognitive decline, Susan put Tony on a Mediterranean diet. She also ensures that he gets regular exercise and maintains his daily routine.
Tony continued to benefit from singing and performing as the disease progressed. His doctor encouraged Susan and Tony’s son Danny to keep him musically active amid the pandemic. He continues to rehearse with his longtime pianist, Lee Musiker, twice a week in his living room.
In an interview with AARP, Susan shared, “I like to tell people when they ask me what I do, I say I take care of a national treasure.”
Glen and Kim Campbell
Glen Campbell was a country music legend. He had 10 Grammy awards to his name and sold more than 45 million albums. Glen began his musical career as a studio musician. He then achieved his first big hit in 1965 with the song, Universal Soldier.
He met his wife, Kim, on a blind date. She was a dancer at Radio City Hall in New York City. They married in 1982 when she was 26, and he was 42. The couple settled in Phoenix, Arizona, and had three children together.
In 2010, at 74 years old, Glen was diagnosed with Alzheimer’s disease. Kim says Glen was always open about his journey with Alzheimer’s. Indeed, during his 2012 farewell tour, Glen brought along a film crew to document his gradual decline as the Alzheimer’s progressed.
The result was the Oscar-nominated documentary, I’ll Be Me, released in 2014. Glen also used his struggle to start a conversation about the disease, remove its stigma, and raise funding for research.
As the disease took hold, Glen became angrier and lost his ability to communicate. He occasionally lashed out at Kim. Glen’s neurologist was surprised to find out that Kim was continuing with his care at home as his symptoms worsened.
In 2015, Kim made the decision to move Glen into long-term care. The decision led to a lot of backlash from both fans and family members. However, the arrangement enabled both of them to find peace and solace. Glen became more cheerful and relaxed. Kim also found support from other spouses whose husbands were in the facility.
Glen succumbed to Alzheimer’s disease in 2017. Amid the tragedy, Kim says Glen passed peacefully and without pain. “He was content in his final years. We did everything we could to give him the best quality of life,” she told People in an interview.
Kim wrote about the journey of her relationship and marriage with Glen in her 2020 book, Gentle on My Mind: In Sickness and in Health with Glen Campbell. She also continues to lead the Kim and Glen Campbell Foundation. The organization advocates the use of music as medicine to alleviate depression, boost the immune system, and manage behavior.
As an Alzheimer’s disease advocate, Kim has also shared the lessons she has learned as a caregiver. She emphasized that a healthy balance between dementia and relationships involves self-care for caregivers.
In an interview with Sounds Like Nashville, she shared, “You won’t be a good caregiver if you don’t take care of yourself. I [want] to emphasize looking for joy every single day, appreciating and cherishing every single moment and looking for the humor in things, looking on the light side of things and being thankful for all your blessings.”
Gene and Karen Wilder
Gene Wilder was an actor, comedian, and activist. He appeared in the movies Willy Wonka & the Chocolate Factory and Young Frankenstein in the 1970s. He is also recognized for his award-winning performance in the TV show Will & Grace in 2003.
Gene met his wife Karen while was preparing to shoot the movie See No Evil, Hear No Evil. There, he played a deaf character.
At that time, Karen was working in New York City as a speech pathologist. Gene came to her office seeking her expertise to help him understand the character. The two formed a strong bond.
After Gene’s then-wife Gilda Radner died of ovarian cancer in 1989, the two reconnected. They married in 1991.
In an exclusive interview with ABC News, Karen revealed the couple’s struggles as Alzheimer’s took hold of her husband. At first, he began lashing out at their grandson and started losing his perception of objects and their distance. He also could not recall the titles of movies where he appeared, when asked in conversations with friends.
In 2013, Gene was diagnosed with Alzheimer’s disease. Karen kept him at home under her care first in California, and then in Stamford, Connecticut, at the home they built together.
Dementia and relationships can be hard to balance. Amid the difficulties of the disease, however, Karen and Gene were still able to share lighthearted moments.
She told ABC, “[One time], after struggling for twenty minutes trying to pull himself up, he looked out as if he was addressing the audience at the Belasco Theater, a place he knew well, and said in his best Gene Wilder voice, ‘Just a minute, folks. I’ll be right back.’”
Karen was with Gene in his final moments. The night before his death, it had been days since he had last spoken. “But on that last night, he looked me straight in the eye and said, three times over, ‘I trust you.’” The next morning, on August 29, 2016, Gene Wilder passed away. He had been listening to his favorite song, “Somewhere Over the Rainbow” by Ella Fitzgerald.
Robin and Susan Williams
Robin Williams may very well be one of the best comedians of all time. His 38-year career saw him in a wide variety of routines and diverse roles, ranging from hilarious to heartwarming.
Robin began dating graphic designer Susan Schneider in 2009 and wed her in 2011. They settled at their house in Sea Cliff, San Francisco, California.
In October 2013, Robin began manifesting unusual and seemingly unrelated symptoms. He struggled with sleeplessness, constipation, a poor sense of smell, and heartburn.
He had also exhibited behavioral changes. “Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of Lewy Body Dementia (LBD).”
On May 28, 2014, Robin’s doctor declared he had Parkinson’s Disease (PD). Robin, however, was not convinced by the diagnosis. Susan realized Robin may have been keeping the depth of his symptoms, such as hallucinations that he may have likely experienced, to himself. In the months leading up to his death, he fell into a depression.
Robin took his own life in August 2014. Three months after his death, his family received the coroner’s report that they learned he suffered from LBD.
A strong bond between partners can mitigate the effects of dementia and relationships built on love and devotion can help couples weather through their darker days. Susan said their “foundation of friendship and love” became their armor against the symptoms thrown towards them by LBD.
“[We] were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence […] Any obstacles life threw at us individually or as a couple was somehow surmountable because we had each other,” she wrote.
After her husband’s death, Susan published a special editorial in the journal Neurology, titled The Terrorist Inside My Husband’s Brain. In the piece, she talked about her husband’s fight with the disease, with the hope that it would “help [neurologists] understand [their] patients along with their spouses and caregivers a little more.”
Susan now serves on the Board of Directors of the American Brain Foundation. She has also since been a prominent advocate for LBD research. Furthermore, she has spoken at many institutions, has lobbied in Washington DC, and has set up the Lewy Body Dementia Fund.
Joygage is sharing stories about dementia and relationships, with the hope of building a better understanding and helping those affected by the disease. Your own experiences may help and inspire many others. If you would like to tell your story, please write to us at wecare@joygage.com.