It’s meatloaf night at the Wenner house.
The evening’s menu is scribbled on a whiteboard that sits below the television in Fred and Fran Wenner’s apartment in Homewood, a retirement community about 10 minutes north of downtown Frederick.
It lists the weather, too — between 67 and 45 degrees, partially sunny; where Fran will be eating lunch — with the clergy “spice” group, her husband’s invented plural of the word spouse; and what she’ll be watching on TV that night — “Chicago P.D.” and “Chicago Fire,” unfortunately for Fred.
The Wenners’ whiteboard is just one strategy the couple has discovered for keeping Fran organized throughout the day. She was diagnosed with vascular dementia in 2013, and though the disease progressed slowly for many years, Fred said his wife’s condition has worsened at a faster clip over the past two years.
Tasks she once tackled with ease have confused her more than ever before, he said. It can be frustrating for her, but Fred tries to remind her that it’s not her fault her memory is slipping.
“I tell her that it’s not her job to remember. If she can’t remember, she can’t remember,” Fred said. “It’s really my job to be her memory.”
Fred is among the roughly one in five Americans who provide unpaid care to an adult with health or functional needs, according to research from the National Alliance for Caregiving. And, according to NAC, that number will grow as the country’s senior population continues to expand.
In Frederick County, there are at least 1,000 caregivers — that’s about how many reach out to the county’s caregiver support program every year, said Brad Petersen, resource and service navigation director for the county’s senior services division. But he said this population is likely much bigger, since many who assist loved ones don’t consider what they do as “caregiving.”
Caring for a family member or friend can be a rewarding journey that fosters a deep sense of connection and trust between loved ones. But it’s also a job that can come with immense emotional, physical and financial challenges — difficulties that, for many, the pandemic amplified.
Though research from the Alzheimer’s Association has found that dementia-related deaths increased during the pandemic, Fred said it’s hard to pinpoint why Fran’s disease is progressing faster these days. Maybe the drop in socialization had something to do with it, or maybe it would have happened anyway.
No matter the reason, though, Fran and her husband both say the nature of their relationship has changed — “Big time,” Fran said. Their dynamic has shifted more toward caregiving and away from mutual satisfaction, Fred said.
Still, they count their blessings where they can.
“Fran really is the same loving little girl that I married 58 years ago,” Fred said. “We’ve come to a point where our primary challenge and the primary gift in life is to care for each other.”
Caring at a distance
In May, Debbie Thackston helped move her father from his home in rural Paw Paw, West Virginia, to the memory care unit of an assisted living facility in Frederick.
Thackston hadn’t wanted to move him, but she knew it was the right thing at the right time. In 2016, he had been diagnosed with Alzheimer’s disease, and though he had managed OK on his own for some time, his condition was steadily worsening. He had already fallen once, and Thackston feared he would fall again.
Moving her dad had been an emotional decision for Thackston, complicated by the pandemic. Assisted living facilities were on lockdown, and Thackston couldn’t visit any of the communities she and her brother were considering.
“My prayers were, ‘Please God, get us through COVID,’” Thackston said, choking up at the memory. “‘Get through this period where I can’t even go take tours to see which ones I would feel comfortable with.’ Until then I’m not going to want to put him in a place where I can’t visit him.”
She started being able to visit facilities in person at the end of February, but in the meantime, she was driving the 80 miles from her home in Frederick to Paw Paw once per week to check in on him.
In the year following his diagnosis, she only made this trip about once per month. Back then, he just needed help with his banking. Still, she retired earlier than planned from her position as principal at Spring Ridge Elementary School to care for him.
As time went by, she started making the drive to Paw Paw more regularly. She also hired community members — people she found through his church and his neighbors — to help support him. By the end, she was calling him six to eight times per day.
“He would say, ‘You know my routine better than I know it myself,’” she recalled.
Before Thackston’s father had been diagnosed, he had been the one to look out for her. Now, those roles have been reversed — something she says has been hard to watch at times.
But what’s been harder, she says, is watching the decline of someone who “could do anything, could make anything” — who seemed to have every tool imaginable and who could fix anything he put his mind to. Now, it’s been at least eight months since he could remember the names of Thackston’s grandchildren.
Still, there are moments over the past few years she’ll hold onto — reading him stories over the phone with her grandson during lockdown and watching her grandchildren swing with him on the front porch.
“I’m just grateful for the years where he did OK [in Paw Paw],” she said. “We were able to support him to stay at home. And I just am grateful that he’s closer to both my brother and me. And we can visit more often.”
Earlier, she remembered, “I would always say, ‘Don’t forget, you don’t ever have to worry, I’m always going to do the thing that’s right for you. Not right for somebody else — but right for you.”
Reinventing and finding joy
On a recent walk along a section of Tuscarora Creek that runs through her neighborhood in Frederick, Rosemary DuMont clambered down the bank to get closer to the water.
“Huh,” she later realized. “Now, I gotta get back out of here again.”
“In times past, my husband would be with me,” she said thoughtfully. “He was always a much better climber than I am. He would reach out his hand, and I would grab it, and I would have gotten up that bank easily.”
But it’s been a while since her husband, Paul, was mobile. Five years ago, he was diagnosed with multiple system atrophy, a rare, degenerative neurological disorder similar to Parkinson’s disease. Now, he needs help with performing most daily tasks.
Unlike people with dementia, Paul’s health wasn’t noticeably affected by the pandemic, Rosemary said. The two of them kept up with his daily exercises and, thanks to telemedicine, didn’t miss a single doctor’s appointment.
But Rosemary missed going in person to the caregivers support group the county’s senior services division hosts and socializing with the ladies in her neighborhood’s book club. For five months, she didn’t let anybody in their house. Her husband’s disease affects his breathing, and if he had contracted the virus, she said, “it would have been over for him.”
Rosemary and her husband have taken full advantage of the influx of new virtual classes, shows and activities that surged during the early months of the pandemic. Together, they’ll attend church services from the Washington National Cathedral, plays from the National Theatre in London and classical music performances — all while plopped on the couch in front of their TV.
Rosemary also downloaded an app called “Camino For Good,” a virtual walk that takes participants along the Camino Frances, a 485-mile trail that winds through Northern Spain and ends at the Santiago de Compostela. She finished the route after walking every day for about eight months and has begun it again.
On her walks, she’ll take photos of what she sees — deer, squirrels, a tire swing hanging over Tuscarora Creek — and will show them to her husband upon her return. She’s taken so many photos she’s had to purchase extra memory space from Google.
“I really miss walking with him,” she said. But when she shows him photos from her daily strolls, “he’s sort of walking with me in absentia.”
This isn’t the first time Rosemary has been a caregiver. She and Paul cared for both sets of their parents before they died, moving each couple into their home for at least a little while to look after them.
After that experience, Rosemary thought she would be prepared to take care of Paul as his disease progressed. But caring for a spouse is different than caring for a parent, she said. They have long-term care insurance and are able to afford hiring someone to help, but she can no longer depend upon her husband in the same way she could when they were caring for their parents.
She can get angry sometimes. She’s not a “paragon of virtue,” she said. After they finished looking after Paul’s parents, Rosemary remembers, they told themselves they deserved a fabulous retirement, full of travel and adventure. The life they share now is not anything like what either of them had envisioned.
It can also be overwhelming to think about how much Paul relies upon her.
“That’s a huge obligation for a human, one human, to be so dependent on another,” she said. “I really feel it sometimes. You know, ‘Hey, he couldn’t survive without me.’ And that’s not — I’m not flattering myself. That’s the truth.”
But when the weight feels too heavy, Rosemary can find solace in an online support group for other people caring for loved ones with Paul’s disease. She tries not to let feelings of frustration or anger consume her for more than a few hours, either.
She rejoices in the little victories, like the time recently when Paul was able to stand up with limited assistance from his physical therapist.
“My husband was smiling, he was so happy,” she said, her voice thick with emotion. “You have to take happiness and little bitty things and sort of savor that and focus only on today.”
“This is the only life we have,” she went on. “And so, today, there might be a victory. We’ll see. And if not, at least we didn’t have a disaster. Every night, when I tuck him into bed, and I kiss him goodnight, I say he’s safe, and he’s in bed, and we had another good day. And that’s the way I feel about it. As long as nothing bad happened, then that is good.”
Building a network
The idea first occurred to Fred Wenner and two of his good friends nearly a year ago: What if they created a caregivers support group at Homewood?
All three of them were caring for their spouses, who had dementia and were declining in physical health. In such a large community, they figured, there had to be more who were like them. So, they pitched the concept to a staff member.
“She said, ‘Look, it’s best to wait till after the pandemic,’” Fred recalled. “But when we got back together, the three of us said, ‘You know, it’s partially because of the pandemic that we’re feeling a sense of urgency to give each other some support.’”
Rather than wait for the pandemic to quell, Fred and his friends started the support group on their own. Staff members later joined them to serve as facilitators. Now, they meet once per month to sit in a circle and share their experiences with one another. They also bring a guest speaker to Homewood each month to address frequently raised questions and concerns.
The group allows caregivers to exchange advice and strategies. But it’s also a space where people can walk through difficult emotions with others who are in similar situations.
“You can’t sit down with everybody and start spilling your guts about what it’s like to keep up with someone who’s declining more and more into dementia each day,” Fred said. “That’s not easy to talk about with most people. In the group, it is. In the group, it absolutely is.”
Since Fran’s diagnosis, she and her husband have also found support in the Greater Maryland chapter of the Alzheimer’s Association.
Each fall, as the organization’s annual walk comes around, Fred and Fran will send letters to more than 100 of their family members and friends to ask for donations. And every year, the response is overwhelming. Currently, the couple is managing 135 individual donations, which together total over $13,000.
They’ll receive piles of notes from dear old friends, which they carefully sort through one by one.
“Fran doesn’t read all that well these days. She’s really slowed down, because she can get to the end of a sentence and not remember what was at the beginning of a sentence, so she has to go back again,” Fred said. “And she’ll sit down with these notes and it’s just incredible what all of this does for her spirits.”
But she still gets frustrated sometimes. In a slow and thoughtful voice, Fran reflected on what it’s like to live with a slipping memory.
“I can’t remember things, which makes it very hard to hold conversations,” she said. “Fred’s really been good about telling me what I mean, but it’s really a terrible thing to have to go through ... I’m just so fortunate to still have him around.”
“So stay healthy, Fred!” she added with a chuckle.
Sometimes, Fred worries that caring for Fran will push him past the point of his own endurance. His dad took care of his mother for the first 10 years of her dementia, before suffering a heart attack himself. Afterward, Fred’s family helped his mom move to a dementia unit in a nursing home and got his dad into a separate apartment, so he could concentrate more on his own health.
But at this point, Fred said, it doesn’t feel like he and Fran are “burning the candle at both ends.” He takes his long walks and sometimes will slip off into the little reading nook in their apartment, where he’ll disappear for a few hours.
“Right, Fran?” he asked.
“Right,” she replied with a little chuckle.
“She’ll come and check on me to see if I’m still alive sometimes,” he said, laughing.
Fran takes care of him in her own ways, Fred said. She trusts him both as a human being and as a longtime spouse, which feels very, very good. She gives him lots of hugs, he said, and they enjoy comfort food together.
“I don’t feel that it’s an especial burden that she relies on me,” Fred said. “When someone is that dependent on you, I guess you could kick it off and yell and scream or whatever. But I see it as her trust in me. I see it as a new and wonderful stage of her love for me. And I can’t imagine it any other way.”