Randall Beach: How six people found hope and purpose after learning they have dementia
Bob Savage sat alongside his five friends in a support group for people with dementia and, reading from a script, told the audience: “My memory isn’t so good. I’ve become self-conscious about it. I wonder if people understand what’s been happening to me.”
He added, “If I could just get across to them — my family, my friends, the people I live with, the people who try to help me — if I could just let them know what it’s like to be me these days.”
This was the introduction to a poignant performance at Quinnipiac University’s Center for Medicine, Nursing and Health Services last Tuesday night. There were about 100 people in the auditorium, most of them students majoring in the health care field. Many more people of all ages should have attended. There is so much to learn.
Savage and the others in his group were there to share their stories about what it’s like to start losing your memory, to go through all the tests leading to a diagnosis of dementia and how to carry on day by day from there.
These six began meeting last June. Under supervision by Dan Belonick, director of counseling services for LiveWell (formerly the Alzheimer’s Resource Center) in Plantsville, they wrote a 38-page script describing what is happening to them and what they would appreciate as they interact with the public.
Their first show was at the Hill-Stead Museum in Farmington last August. Erica DeFrancesco, clinical assistant professor of occupational therapy at Quinnipiac, who organized last week’s event, told the audience before the presentation: “I saw this done several months ago and it certainly changed my perspective. This evening will change your perspective.”
She was right. We spent more than an hour walking in the shoes of six brave, passionate people.
The show, originally conceived by Maureen Matthews, who has worked with memory-impaired people for more than 30 years, is called “To Whom I May Concern.” The word “I” is not a typo. As Savage explained in his introduction, the group was writing an open letter to people who care about them. “This letter is not about an ‘It,’ a nameless, faceless object. This letter is about an ‘I,’ and that is me. I’m writing to let you know what it’s like to be me these days.”
Savage, who has moved to a residence in LiveWell, noted, “Most people keep quiet about this. You see, I have been diagnosed with a dementia. Sounds bad, right? Actually, it’s a terrible word: to lose one’s mind. But you can see that I haven’t lost my mind. I have some problems, yes, but I’m still living my life, one day at a time.”
Savage said living with dementia presents many challenges “but that doesn’t mean my life is terrible. And it doesn’t mean I don’t want to feel connected and valued. I still feel I have much to offer.”
All of us in the audience were given a workbook provided by Dementia Friends Connecticut (www.dementiafriendsct.org). It explained: “Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease is the most common type of dementia and accounts for 60 to 80 percent of cases.”
DeFrancesco notes Alzheimer’s is “an irreversible, progressive brain disease. It affects an estimated 5.4 million Americans and is the fifth-leading cause of death for those aged 65 or older.”
Before the show began, Belonick asked us to write down five words that come to our minds when we hear the word “dementia.” I wrote “elderly” and “incurable” but then tried to be more positive: “challenging,” “courage” and “friends.”
Some of the open letters in the performance were addressed to co-workers. Peter Robertson of West Hartford told his former co-workers: “I defined myself with my work. I was good at it. We were cruising down the highway. Then we hit the manhole: Alzheimer’s. I know I was having trouble keeping up with my messages but you should have said something. Instead, you told my boss I wasn’t working hard enough.”
Roger Rasch of Prospect told his former co-workers: “We used to be friends! Then all of a sudden one day, it was like I was there but not there. You moved on without me but I’m moving on too.”
Rasch added, “as a scientist, I want to figure things out.”
Lori Castellani of Newington addressed her letter to her former boss: “We had a great relationship. We were friends. Then Alzheimer’s came. One day working, the next day home. No explanation! My brain stopped counting numbers like before. You never think it will be you. I loved my job and all I wanted was a chance. I may have trouble counting but I still count!”
Sometimes the letters began “Dear Alzheimer’s.” Tricia Pearce of West Hartford did so as she wrote: “When you knocked on my door, I had to ask myself, ‘What am I going to do, just sit around, talk and listen to music?’ No way! I know I have a chance to do something really good in my life. I’m doing that right now!”
In his letter to Alzheimer’s, Savage wrote, “We worked together to show the power of creativity, the power of the present moment, the finding of a new spirituality and the power of purpose.”
Savage continued: “The dark cloud is still there, I still have nightmares, you are still coming like a train down the tracks. But now I’m skating above it. I have purpose; it makes me whole. What a blessing!”
Pat Murphy of Torrington wrote, “I worry about people treating me differently. There is a lot of stigma. My real friends I’ve told but people in my new community, I’m not sure I want them to know because then I feel they may treat me differently.”
All six of them understand that stigma. Savage wrote, “My full purpose now is to work as hard as I can to help reduce the level of our stigmatization that society has so heavily placed on us. That’s why I am here. That’s why we are all here tonight.”
Castellani started a letter: “Dear fitted bedsheet.” She wrote: “Who created you? Not someone living with Alzheimer’s! I can tell you that! I seem to remember that you aren’t so easy for others either. I’m living with Alzheimer’s. I am what I am and I’m happy. But I still can’t make my bed.”
In the script’s epilogue, Pearce said, “We must be seen, known and understood.” And Robertson said, “We must be honored, included and valued as full members of our communities.”
After the group received a standing ovation, Stephani Shivers, LiveWell’s vice president of community initiatives, noted the courageous performers had sometimes struggled to get out the words. She asked us to write down five new words about dementia after having seen the show. I came up with “fear” and “worry” but also “hope,” “thinking” and “love.”
Some audience members stood to share the words they had written before and after the performance. A young man said his first list included “darkness, void, fear, absent.” But his second list was: “hope, inclusion, fight, together, voice.”
A somewhat older man stood up and identified himself as “a family member of somebody with early onset.” He said, “After listening to these stories, this gives me hope and my family hope.”
But Castellani got choked up as she talked about the death of her husband, who had supported her with daily tasks.
Shivers asked Castellani about her belief many people addressing those with dementia are “dismissive and condescending.” Castellani nodded. “It’s hard to get the words out. They’re there but you can’t get them. I want to say things and I just can’t get it out.”
And yet, Pearce smiled often during the evening. “I want to be happy all of my life with my family,” she told us. “So I just keep coming. You can do it. You just have to take it and embrace it and smile and go ahead and talk.”