The job of caring for a loved one is all encompassing in normal times, but during the coronavirus pandemic, providing care for others prevents even more challenges – isolation and fewer opportunities for self-care.

Dave Simons, a full-time caregiver for Voni, his wife of 57 years, knows first-hand the demands of caring for a loved one during the pandemic. Voni has been diagnosed with vascular dementia, a vascular injury or disease within the brain that causes progressive loss of memory and other cognitive functions.

During the pandemic, Simon, who once was an engineer by trade, recognized that he needed additional knowledge and support to care for his wife during the pandemic, so he enrolled in “Powerful Tools for Caregivers,” an online class facilitated by UCHealth’s Community Health Improvement educators and co-sponsored through the Larimer County Office on Aging. It is a virtual (Zoom) two-hour weekly class for caregivers that lasts six weeks.

Tools for caregivers

“The class reminds caregivers they’re not alone,” said community educator Ellen Pihlstrom. “There is a lot going on for these caregivers. They’re isolated, and we’d hear stories about how they haven’t been out or even dressed to go out for two months until this Zoom meeting.

“It’s been a mixed bag for caregivers during this pandemic,” she said. “Because caregivers are forced to be homebound more now, the care receiver is a bit more stable, but on the other hand, the caregiver is more isolated. We found people really needed the class to talk with others, just to talk, and to talk about their issues with caregiving.”

The Powerful Tools for Caregivers class is facilitated by educators but class participants lead discussions. Each week, participants focus on a different topic. Education is provided on recognizing the symptoms of depression and improving nutrition, but most information comes from sharing between caregivers, Pihlstrom explained.

“Each session had a good topic like dealing with emotions or expressing yourself,” Dave said. “I don’t have a lot of anger, and I haven’t experienced all the things that others experienced but dealing with emotion and how to express that — the communication — that piece was very good and helpful.”

Each week, participants create an action plan and vow to the group that they’ll accomplish a goal that focuses on self-care.

One action plan for Dave is that he’ll ride his trike.

Seeking caregiver resources and knowledge about dementia

Dave and Voni Simon moved to the Fort Collins area in 2002 and bought a place on the edge of town with a great view of the foothills. Dave had taken early retirement after 23 years in full-time ministry, and the couple stayed busy with church and exploring the natural areas around their home.

About four years ago, Dave started to notice Voni was experiencing increased forgetfulness. Tests confirmed vascular dementia.

“We don’t know for sure if it will go to Alzheimer’s — there is no evidence of that,” Dave said. “But we don’t know the speed or where it is going to end up.”

Less than two years ago, Voni began needing a wheelchair to get around. The couple talked about moving to an independent living community, but after extensive looking, they just could not give up their foothills view. So, Dave decided he would seek help and support by taking classes and gaining as much information as he could, including attending Memory Cafes, a Dementia Together program, with Voni, and seeking a support group for himself.

In December, Voni had a fall and needed surgery to repair her hip. After, she went to a rehabilitation center and continued physical therapy. Then the pandemic hit and that all stopped, as did other resources for support.

COVID and the challenges of being a caregiver

Dave and Voni’s neighbors are great. They ran errands for the couple during the first few months of the pandemic so that Dave could stay with Voni. When Dave ventured out, Voni stayed in the car. They limited visitors to their home, and options for Dave to get a little time away from his caregiving duties dwindled.

Before COVID-19, Dave played the clarinet in the Northern Colorado New Horizons Band and left home for a few hours a week to practice. Voni was also getting along well with a walker or he’d push her in the wheelchair so they could get out for long walks. He set up Meals on Wheels, but continued to maintain their home and be a full-time caregiver. But with the pandemic, he needed some new tools to help him balance out his life again.

The class has taught Dave to make sure to take time to ride his trike. Thirteen years ago, he and Voni were in a bad car accident. Dave suffered a spinal injury that makes it hard for him to ride a regular bicycle. And, he still wonders if that accident contributed to his wife’s dementia.

On a recent Friday morning, Dave got out and rode his trike, fulfilling his promise to the group in the online class.

“It meant I had to have someone be with Voni, but this was something I really wanted to do,” he said.

He did a 10-mile ride.

“It was just so relaxing and it filled my cup,” he said. “And that spills over when you feel that sense of joy and invigoration. That physical stimulation of being out in the fresh air. I don’t know if I treated her differently, I probably did when I got back. I care for her a lot — we’ve been married for 57 years. But it did give me that feeling and it carried through the rest of my day. And you realize how valuable that time was.”

Making self-care a priority for caregivers

“The biggest things are these action plans,” Pihlstrom said. “They can be daunting, but it pushes these people; gets them moving in that better direction. Part of the key to the class is becoming aware that they need to take care of themselves, and this class gives them the tools to do that.”

Dave has followed up with what he’s learned with meditation and music, waking before his wife in the morning for a few hours of quiet reflection.

“Sitting, reflecting, you realize the value of that quiet time and spending those moments just in quietness and how meaningful that is,” he said.

And he’s started to journal again, something he’d done before but had gotten out of the habit.

“How do you deal with change and uncertainty? That’s the biggest thing for all of us as a caregiver. This whole thing — we just don’t know,” he said. “Even this morning as I was writing: I’ve got to keep it together; I’ve got strong faith and belief. I write those key points every day.”

Dave will continue to use the tools he acquired as he faces other caregiving challenges ahead. With his wife’s worsening condition, he said they have to once again consider moving out of their home.

“I’m now relooking at the option: How long can we stay here and maintain this home, inside and outside? So, I’m looking to get rid of stuff, make it a slow process instead of having to do it at an accelerated pace,” he said. “I don’t think independent living will work for us. I do think it will have to be the next level of care. It will be an adjustment for me wherever we go but we will try to live together as long as we can.”

And Dave said he’ll continue to look for opportunities to learn more about dementia and find support.

“I’m always searching for more information, a better understanding,” he said. “Anything that can help me learn more about vascular dementia because I’m on that journey.”