Virtual Alzheimer’s choir brings ‘joy and light’ amid darkness
Down a long, winding driveway in Colchester is a home tucked away in the woods with vast windows and sweeping views. The leaves rustle and the brook babbles in the stillness as, from a window, comes the faint sound of a couple singing their quarantine blues away.
Carol Conklin and Janet Peck, together 44 years, sit side by side in their living room, holding each other’s hands tightly as they sing songs from years past that stir up memories, especially for Conklin.
Conklin, 67, is in the early stages of Alzheimer’s disease, which, in her own words, feels like “losing pieces of yourself slowly.”
Peck is watching her wife’s memories fade and she forgets the skills of her electrician trade and fumbles around the kitchen, forgetting where things are. Thankfully, the pair agree, she still remembers how to do the cooking.
Now isolated as they self-quarantine during the COVID-19 pandemic, Conklin finds her days blurring together even more, her memories less sharp as her routine slips away.
But for an hour and a half each week, the two don’t think about Alzheimer’s. They don’t think about COVID-19. They sing.
“It gives us a moment of joy and light while dealing with an illness that is often difficult and brings sadness, loss and darkness, it certainly brings joy to our life and to be able to look forward to doing it every week,” Peck said.
That moment of light is thanks to the Shared Voices choir, sponsored by the Connecticut Chapter of the Alzheimer’s Association and led by certified music therapist Maggie Carchrie. The choir was founded about two years ago by volunteer Heather Dobbert as a way to bring individuals with early onset Alzheimer’s, their caretakers and families together.
“As the disease progresses, it becomes harder and harder to find activities to do together where people can bond and just have fun,” said Esther Corcoran, north-central regional programming director for the Alzheimer’s Association Connecticut Chapter. “For that hour and a half we’re together, there’s no talking about Alzheimer's. We don’t need to talk about it, we don’t need to educate about it, we just exist and we’re in the moment and we’re all together and it’s a fun time for everybody.”
For Peck and Conklin, the choir was the perfect activity for them to find — Peck is a former singer who used to perform in cafes and at gatherings, many of which Conklin would attend, while they were growing up in Manchester.
“She would always say that she fell in love with my voice before she fell in love with me,” Peck said. “Music has always been a part of our relationship.”
Now, music has become an even bigger part of their lives. As they stay inside to stay safe, it’s one of the only things on their calendar, and all week, Peck said, Conklin asks her excitedly when the next choir practice is.
“It gives you something to look forward to that you know you’re going to have fun doing,” Conklin said.
Connection to the outside world
In light of the COVID-19 pandemic, the Shared Voices choir shifted from meeting in person in East Hartford monthly, to meeting every Thursday on Zoom, with eight to 10 singers joining in. When the video call connects, Peck and Conklin’s faces light up as they say hello to their friends.
“Even though the group is about singing, we still get a little bit of time to chat and check in on how each other is doing, so it’s a little bit of a support group and social group at the same time,” Peck said.
As the couple self-isolates, they’re keeping busy by exercising, walking, hiking, doing housework and enjoying some down time in their dream house in the forest. Since their retirement, they had been traveling the country, checking canyons and national parks off of Conklin’s bucket list before her memory slips away.
The choir, Peck said, has helped Conklin keep connected to the outside world and serves as an anchor to the concepts of time and date. “Carol has said that for her, because every day is similar (during quarantine), she loses track quicker, it’s harder for her to remember what day it is,” Peck said.
“Even if their interactions outside of their immediate caregiver, and whoever’s in the house, are limited right now, they can count on this group happening,” choir director Carchrie said.
“I think the benefit is that we can all stay together in a time where people aren’t together,” she said, adding that having something to plan in their schedule can help folks with dementia with their cognitive, emotional and social needs.
Stirring up memories
In addition to connecting with others, the Shared Voices choir also helps individuals battling dementia connect with themselves.
Carchrie, a board certified musical therapist who works primarily with people with dementia, said that music is a powerful tool for reaching memories that may otherwise be lost and is a memory trigger that lasts well into the late stages of the disease.
“Music is often the last thing to go,” she said.
When choosing music for the choir, she tries to choose songs from the singers’ youth, around ages 15 to 25, that will stir up memories from that time. Singers often are comforted by the familiarity of an old song, like “This Land Is Your Land,” “You Are My Sunshine” and “Que Sera Sera,” or transported back to happy, or sometimes sad, times.
Carchrie closely watches the screen as they make their way through a songbook of traditional, patriotic and cheerful songs, watching for emotions that she can address with the singers either during the group call or in private. She also looks for opportunities to bring joy and fun into the choir, inviting singers to bring their dogs into the Zoom call for a singalong of “How Much is That Doggie in the Window?”
Peck said that she is often surprised at how well her wife knows the music.
“These are songs that everybody knows, but Carol knows some verses I’ve never even heard,” Peck said. “I don’t know where she knows them from.”
“I don’t, either,” Conklin said.
“Music really speaks to us across the lifespan and is a way for these folks to feel like they have some control, that they feel empowered that they have a place where they can express themselves and really have a positive experience,” Carchrie said.
For Peck, the hour and a half of singing also provides a release from the stress that comes with being her wife's care-partner, or full-time caretaker — a stress that’s only exacerbated by the COVID-19 pandemic.
Peck said she worries daily about what would happen if one of them contracted COVID-19 and had to go into the hospital.
“I wouldn’t be able to go with her and I don’t know how that would affect her and how she would deal with that,” said Peck, who knows her wife would be confused about why she'd be alone. The choir, she said, is a welcome distraction from those anxieties.
While the choir helps Peck unwind, the decrease in anxiety is also beneficial for Conklin, Corcoran said.
“There’s confusion that goes along with this disease already and this just multiplies it,” Corcoran said of COVID-19. “There's a lot more anxiety in the world in general that we can’t help but bring home to our families and when we’re caring for somebody and we’re anxious, their anxiety is going to build.”
Isolation a challenge
Corcoran said that individuals with Alzheimer’s may face more challenges with their disease now, as they struggle to adjust to a new normal. “A person with dementia really may not understand or remember why things are so different, they may not understand the reasoning behind people wearing face masks and staying home,” she said.
In addition to being confused about why they can't visit friends and family, attend day programs or run normal errands, the isolation of quarantine can be particularly challenging for people with dementia.
As the disease progresses, it can be challenging for people with dementia to be in large groups, to be around a lot of noise or confusion, or to socialize with others who may not understand the disease, especially because of the stigma that surrounds Alzheimer’s, Corcoran said.
Because of those challenges, people with dementia and their caregivers may already feel isolated — a feeling that may increase tenfold while stuck inside alone. That isolation can lead to feelings of depression or apathy, but singing can help bring them back to a more present state.
“I find that when people have that connection (to music), their whole affect changes,” Carchrie said. “Their whole mind, body and soul changes all of a sudden; they’re transported to a different time, a different place where there’s a positive experience, there’s a positive memory. ”
Though sometimes music can stir up sadness, for Peck and Conklin, the choir brings nothing but happiness — Conklin happy to be singing and Peck happy to see her wife smiling as she sings along.
“We always sing 'You Are My Sunshine,' we’ve always sung that to each other, always,” Peck said. On a gloomy Thursday, gray clouds hanging over their home as wind whipped through the tall trees, the two looked into each other's eyes as they sang about sunshine “when skies are gray,” Conklin remembering every word.
“That’s the beautiful thing about singing, she never struggles to find a word,” Peck said.
“As she struggles more and more with finding her words, I hope the music always brings her back.”
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