Infatuated with each other and with Italy, Bob Powers and Donald Clement found themselves spending more and more time in Lucca, their haven in Italy, during the course of their 25 years together.
They eventually bought a house and spent three months a year there, until Clement’s advancing illness, marked by increasing dementia, made trips abroad impossible. So perhaps it’s not altogether surprising that Clement, near death after suffering through eight years of primary progressive aphasia (PPA), burst into singing opera when he returned home to die.
“He spent the last five to six months in a memory-care facility, which was a pretty awful experience. Despite it being beautiful and very expensive, it was ill-equipped and understaffed and I decided to bring him home,’’ said Powers.
“He was on the gurney and the door to our condo was opened and they wheeled him in. He starts to cry and then he smiled so big and he starts to sing opera! Nonsensical stuff, but it was opera. It was a very emotional experience for him and for me, too.
“I am so happy I brought him home because the one week that he had was peaceful and, before he died, I got to hold him in my arms and tell him what a wonderful husband he had been. My sister said she saw him mouthing the words ‘I love you.’ ‘’
Donald Clement died in August 2021, seven years after receiving his diagnosis.
Love, loss and finding purpose
Powers spoke with Rethinking65 on the morning that he was to perform “Chasing Rainbows: A Story of Love, Loss and Finding Purpose,’’ the show he wrote in celebration of Clement and their lives together, and of his struggle with PPA. It was presented at the Clocktower Cabaret in Denver. All proceeds will benefit the Association for Frontotemporal Degeneration (AFTD), the leading organization dedicated to helping families affected by frontotemporal degeneration (FTD), and advancing research for treatments and a cure. Click here to watch the video.
Powers, 81, a management consultant for AT&T and then for his own company back in the day, eventually turned his love of the theater and words into a career as an author, playwright and performer. Several years ago, he donated proceeds from his play “An Ode to Barry Manilow’’ to the AFTD.
Matt Ozga, content and media relations manager at the AFTD, said, “FTD disorders rarely present with memory loss, at least at first. Far more common are behavioral changes and/or a growing inability to speak and understand written and spoken language. This makes it tricky to diagnose as dementia — we’ve heard cases of doctors writing off FTD symptoms as depression, or just the natural consequences of getting older. That’s not necessarily the doctors’ fault — FTD just isn’t well known enough at the moment.’’
Frontotemporal degeneration is a form of dementia causing loss of cognitive function that affects speech and behavior. It is an umbrella term for a group of progressive diseases that affect the same brain regions, including behavioral variant FTD, PPA, corticobasal degeneration (CBD), progressive supranuclear palsy (PSP), and FTD/ALS.
Ozga said that FTD differs from Alzheimer’s disease in that it’s much rarer (about 50,000 to 60,000 cases of FTD in the United States as compared to about 5 million for Alzheimer’s). Besides having different symptoms than Alzheimer’s, FTD occurs earlier in life — the average age of onset is in the late 50s versus the late 60s. It’s the most common form of dementia diagnosed in people under 60, but it can be diagnosed in people as young as 21 and as old as those in their 80s. Clement was 62 when diagnosed.
Ozga said that although there is no known cure for FTD, there is “more awareness, greater advocacy, and important recent strides in research — including work being done to try to identify FTD biomarkers, which are measurable signs of disease pathology in the body. Identifying a viable biomarker would lead to earlier, more accurate diagnosis.’’
For eight years, Powers took care of Clements, an architect whom he describes as “the sweetest man in the world.’’ In a fog after Clement’s death, Powers found purpose again after a speaking engagement about Clement’s struggle with the disease, at the AFTD annual conference in April 2022, led to a meeting with AFTD board chair David Pfeifer.
“I realized that what I had done at the conference was tell the story of love. When I met with the chairman of the board of AFTD, and I told him I wanted to write a play about it, he said, ‘The hair is standing up on my arm. Go for it.’ ‘’
Powers flew home to Portland, Oregon. In five months, the idea had become a reality.
“That was the end of April 2022, and by August, not only had I written, produced and premiered the play but it had sold out. It was the most effortless thing I have ever done. The play just poured out of me,’’ he said.
“Chasing Rainbows’’ had its premiere in August 2022 in Portland, and the show raised nearly $20,000, 100% of which was donated to the AFTD, Powers said.
A universal message
When Powers visited friends in Lucca, they persuaded him to perform the two-act play, with music, there, as well. Although Powers performed it in English, he says the audience, made up of Americans, Italians, Turks and other nationalities, all appeared to understand its point.
“I got an email from a Turkish woman who was sitting with a man right up front, very close to me on the stage, and he was expressionless during the whole show. But in her email, the woman said the man had particularly enjoyed the show!’’
“‘Chasing Rainbows’ is almost like a fireside chat, without the fireplace,” he said. “I sit in a comfortable chair on stage. There’s a photo of Donald and me, a cup of coffee, a table and lamp and a carpet. I sit there as if I am telling the story from a book I’m holding.
“There are three pieces of music that are part of the play. When I come on stage — I walk through the audience greeting people — I say ‘Alexa, play “That’s Amore,”’ and everybody in the audience smiles because that’s a joyous song.
“Then I tell the love story, which is Act 1, then there’s an intermission, and when I come back and sit down, I say ‘Alexa, play “Come What May,”’ a love song that says ‘I will love you until the end of time, come what may.’ ‘’
From there, Powers performs Act 2, and at its end, the audience hears Andrea Bocelli singing “You’ll Never Walk Alone” from “Carousel.”
A slide show of photos follows the chronology of the show, showing the couple being married in Canada, through the harrowing years of hospitalization, and ending with Clement’s death.
Ozga said the majority of the AFTD’s income comes from individual donors and family foundations, and that volunteer-driven events are a key source of donations to support the organization’s mission. More information is available at www.theaftd.org.
Powers will perform “Chasing Rainbows: Love, Loss and Finding Purpose’’ in March in Sacramento, and in early summer in St. Louis. Readers can contact him at firstname.lastname@example.org.
In a four-decade career in journalism, Eleanor O’Sullivan has reviewed many books on best practices for financial advisors, has written for Financial Advisor and the USA Today network, and was the movie critic for the Asbury Park Press.