By Thomas Goldsmith
From Thanksgiving to Hanukkah, through Christmas and beyond, this time of year can hold joy, but also holds peril for frail older people. Pitfalls could come in the form of too much or not enough company, overly rich food, departures from routine, and high expectations, North Carolina caregivers say.
Especially as 2020 nears an end in the season of COVID, holidays for older North Carolinians may require a different kind of celebration, a time to cherish and celebrate the human connections that remain, without placing too much burden on caregivers or recipients.
That’s the approach that Tom McCann, 83, of Raleigh, has built while looking after wife Kathleen, 81, who has had Alzheimer’s disease for 14 years.
“The holidays are a hard season for everybody,” McCann said in a phone interview. “They’re harder for people who have the disease, but they also are harder in this time frame for others.
“Don’t expect a lot, and you’ll be surprised at how much you’ll get.”
“You take little victories along the way,” McCann said. “Sometimes it’s the smile; sometimes it’s just a crazy wink or something like that.”
Recent research from the Kaiser Family Foundation found that 24 percent of people 65 or older experienced depression and anxiety beginning in March and during the pandemic, more than twice the 11 percent measured two years earlier.
Fear of contracting COVID-19 has cut or sharply reduced in-person visits for long-term care residents. The coronavirus has also put a stop to efforts such as Memory Cafe, an organization that works with people with Alzheimer’s in North Carolina and several other states that provides socialization opportunities for both caregiver and the cared-for. The organizers gained a partnership and some mentoring from the long-standing North Carolina Alzheimer’s support group Dementia Alliance.
“We were able to give some guidance and training to help them get started,” said Dee Dee Harris, family services director at Dementia Alliance. “We attend(ed) every month to be a hostess at one of the tables.”
Tom and Kathleen McCann made regular visits to Memory Cafe events in Raleigh to enjoy live music, food and dancing at Good Shepherd Lutheran Church. Then they were shut down by concerns about COVID. But Gail Vaughn, a volunteer organizer of the Memory Cafe, said she and others weren’t willing to give up entirely because attendees couldn’t dance cheek to cheek — or at all when the monthly evenings ended.
“For the first six months, I would send out an email with a 10- or 15-minute YouTube video of some of our entertainers providing music,” Vaughn, 69, said over the phone. In addition to skilled musicians, the North Raleigh Memory Cafe provided its members with videos of professionals in fields such as nostalgic pop and the dancing that goes along with it.
Vaughn and co-founder Ginny Poston arranged a certain performer’s moment of connection at the cafe, one that touched the hearts of caregivers as well as people with memory problems.
“He was a ballroom dancer and an actor for years,” Vaughn said of the entertainer. “And so he would just pick someone from the crowd, and they would start dancing. And then other couples would get up and dance.
“And for me, that’s when the tears just started falling. When you watch people who have a really hard time communicating and then all of a sudden they’re dancing together — that’s just magic, I think.”
Summer hits the streets
The virus has killed more than 2,160 North Carolina nursing home residents as of Tuesday, and hope and prayer won’t always bring relief to older people. Of course, medical practitioners and prescribed drugs can make the day easier for older people and those looking after them. A small dose of the SSRI medication Sertraline has helped Kathleen maintain calm when anxiety mounts, her husband said.
“We’ve been doing a half pill for years and it just takes the edge off,” Tom McCann said. “She was not anxious at all, which is the greatest thing in the world.”
Just as the pandemic raged on a broader front, social tension emerged in a white-hot political environment and street protests over unequal treatment of Black people by police.
A record year nationally for hate crimes was reflected in threats against the downtown Raleigh office of the LGBT Center of Raleigh, said Les Geller, 74, Central North Carolina coordinator for SAGE, a national group that advocates for older LGBT people.
The center found new space and the will to forge further connections among people whose networks have dwindled in the days of lockdowns, curfews and closed businesses.
“One thing we are doing in person, which took us a long time to work up enough nerve for, we’re doing our twice-a-week walks again,” Geller said. “These walks got moved from location to location. But we’ve done Shelley Lake and we’ve done the North Carolina Museum of Art trails. We just started up again.”
Finding connections in long-term care
Boredom and isolation have struck the LGBT community hard during 2020, Geller said.
“And we’re just looking forward to getting together again because we miss each other. I mean, we’re like a chosen family. Basically, we kind of feel like that’s all being ripped away from us,” he said.
Older LGBT people in long-term care may be hit particularly hard in an environment where they don’t always feel confident in their identities.
“We reach out and we just don’t know how to get in touch with these folks,” Geller said. “And part of it is, I’m assuming some of them, if not a lot of them, don’t even know we exist.
“So that’s, that’s one of our challenges, to get our name into these long-term care places and [continuing care retirement communities], assisted living facilities, all of that.”
Even those such as the McCanns, who are living at home in Raleigh with some in-home help, have seen holiday observances shrink in attendees, though not necessarily diminish in emotion.
“We have a large family — have six children and 21 grandchildren,” Tom McCann said. “When we would have holidays, we would have 25 for dinner, right up here on Falls of the Neuse.”
Public health officials say holding large sit-down dinners to which hordes of kinfolk pop out of cars bearing their specialty dishes are ill-advised in 2020. The gatherings potentially violate Gov. Roy Cooper’s orders to limit numbers even at holiday dinners.
“We’ll do the same thing we did for Thanksgiving,” McCann said of Christmas plans. “I got a Honey Baked Turkey and my wife and I had dinner together. It’ll happen the exact same way again. We’ll just have a different kind of a dinner.”
Back at Memory Cafe, the efforts to keep the flow of love and memory going via videos continued once the on-site evenings had to shut down. Organizers sometimes earned heartwarming responses from the husbands, wives, daughters and sons involved.
‘Fight to find a spark’
“Obviously, the caregiver is the one who would have to communicate with us,” Vaughn said. “The daughter of one woman sent us back a video of her mother dancing to the song we sent.
“It’s just anything that you can do to help them fight to find a spark, or some connection that is so hard to come by.”
And what of Christmas and the kinds of memories that draw generations together? Vaughn says her mother, who had dementia and became mute, gained pleasure from a practice that brought the two together and opened up broad reaches of the past.
“One thing that we would try to do with my mother is just bring out the pictures,” she said.
“We would just do a lot of reminiscing, and even though she wasn’t verbal, she would sit for hours and turn the pages of a photo album. Who knows what she was thinking? But it was great to see her engaged.”