It’s the toughest job you’ll ever love.
Yes, that was a tagline for the Peace Corps many years ago, but for many it applies to a thankless, often unseen job the pays no money at all: caregiving.
Caregivers sacrifice just about everything – time, money, jobs and outside interests – to dedicate themselves to loved ones incapable of caring for themselves.
The demands are great and the stress level is high, even during “normal” times. Add in a global pandemic, and the pressure on caregivers has grown exponentially.
But the Caregiver Support Program through the Milwaukee VA Medical Center has stepped up during the pandemic in order to provide as much help as possible for those family members caring for Veterans.
“Many family caregivers are not able to receive respite and are carrying a heavier burden. But they’re trying to be creative and have some type of structure.”
— Ida Umentum from the Milwaukee VA talks about how caregivers are
working even harder since the COVID-19 pandemic.
“They are doing an incredible job with wanting their Veterans to remain safe and healthy,” said Ida Umentum, Caregiver Support Coordinator. “They have provided patience and dedication, and they’re committed to continuing to provide care.”
As with many other programs, the pandemic forced Caregiver Support to rethink delivery of services.
Adult Day Health Care Centers were shut down and other support groups canceled in the wake of the virus. Caregivers had to adapt, and program coordinators shifted to online delivery of services.
Still, the burden fell hard on the caregivers. But they are quite resilient, and it would take more than a global pandemic to stop them.
“Many family caregivers are not able to receive respite and are carrying a heavier burden,” Umentum said. “But they’re trying to be creative and have some type of structure.”
Veterans living with dementia often need structured activities, Umentum said. However, they may not understand that the pandemic has nixed some of those activities, such as going to their favorite restaurant or meeting with other Veterans.
“It’s their family caregiver who is reassuring them and distracting them to ensure they are safe,” Umentum said.
“Many family members whose Veterans have dementia… are showing tenacity and integrity in maintaining the Veterans’ health and dignity. They are truly an inspiration.”
Caring for loved ones is an around-the-clock job
Betty, who asked us not to use her real name, is one such caregiver who has stepped up her game in the era of COVID-19.
She and her husband live in a small city in northern Wisconsin. Her husband, a 69-year-old Army Veteran, has multiple sclerosis and suffered a broken hip in July 2018 after a fall. While recovering in a nursing home in Green Bay, he contracted an infection and suffered septic shock.
“I almost lost him,” Betty said.
“I’m here for him 24/7. The only time I leave is to go to the grocery store. That’s about it. As soon as I get up, I have to take care of him.”
— Betty talks about the challenges of caring for her husband.
Her husband was moved to a nursing home closer to home, Betty said, but wasn’t showing much improvement. So she brought him home.
“He’s recovering; he’s almost back to the way he was,” she said. “Then the virus hit, and I said, ‘We’re not going anywhere.’”
Due to her husband’s compromised immune system, Betty discontinued visits from an outside caregiver and took on all care for her husband.
“I’m here for him 24/7,” she said. “The only time I leave is to go to the grocery store. That’s about it. As soon as I get up, I have to take care of him.
“It’s hard, but I’ll put up with that. I don’t have any choice.”
It helps that Betty is a certified nursing assistant who used to work in a hospital. She has learned to do range-of-motion activities with her husband and tend to his other needs.
She has also encountered a problem facing many caregivers – a lack of compassionate and qualified professional caregivers who can come into the home and provide some respite.
“I could use the respite, but close to me, the availability is only two days a week,” she said. “And I don’t want too many people coming in and out of the house.”
Freak accident leaves Marine a quadriplegic
“Life changes on a dime,” said Nancy Sibley, and she should know.
Her son, Ian, a U.S. Marine, was working as a recruiter about eight years ago when he and another recruiter were traveling by motorcycle in the plains of western Kansas and were literally blown off the highway by a gust of wind.
The crash left Ian a quadriplegic.
Ian spent two years at the VA Medical Center in Minneapolis before he came back to his home outside Appleton and Nancy became his full-time caregiver.
Nancy thought she would have some help from private, outside agencies that provide in-home caregiving. That didn’t materialize.
Nancy realized she would have to step up.
“Once I gave up the hope of getting help, the stress was cut in half,” she said. “You accept the way it is, then you have to work with it.
“This isn’t the way I wanted to spend my golden years,” Nancy said. “But it’s more rewarding.”
Nancy admitted the transition wasn’t easy. Ian requires special lift equipment, and she had to learn a host of other skills, knowing that Ian has “a myriad of health care issues.”
It helps that she’s a retired nurse, but the work still takes a physical toll on her.
“Twenty years ago, this would have been no problem,” said Nancy, who said she is “pushing 80” years old. “But I don’t have the stamina now.”
She said she appreciates the resources and help she has received through the Caregiver Support Program.
“They have really stepped up,” she said. “I cannot stress enough how good the VA caregiver group has done. They’ve been really responsive and willing to help. If it weren’t for the VA, we’d be up a creek.”
Nancy noted that caregiving has brought her closer to her son, who is now 41. After he joined the Marines, she hardly saw him at all. Now it’s a different story.
“I know him better now than since he was a baby,” she said. “It’s been a wonderful adventure.”
Nancy’s biggest worry is what will happen after she is unable to care for him. They are already planning to move to a new house closer to Appleton – one that will be more accessible than their current home.
“I won’t be able to go on forever,” she said. “He needs more than I will be able to deliver.
“If there’s any stress in my life, that is it. When I’m gone, what’s left for him? He’s got a lot of life ahead of him. We’re trying to plan as much as possible.”
She said she considers herself “blessed” to be able to take care of Ian.
“For me it’s really rewarding. I can’t say I would want to be doing anything else,” she said. “I have a very full and rewarding life, though it’s not what I expected.
“And we have the VA in our corner, which is just wonderful.”
These examples of the commitment of caregivers are representatives of most caregivers, said Kameron Cardosa, Caregiver Support Program Registered Nurse.
“They have really stepped up. I cannot stress enough how good the VA caregiver group has done. They’ve been really responsive and willing to help. If it weren’t for the VA, we’d be up a creek.”
— Nancy Sibley, talking about how VA has been by her side
since she became a caregiver for her 41-year-old son.
“All caregivers I work with are typically very similar to Nancy,” he said. “She is amazing. Pretty much all of them are very protective of their Veterans and do what is asked.”
While the pandemic has limited Cardosa’s in-person work with caregivers, he said phone calls and video conferencing have helped fill the gap.
He said he hasn’t received any panicky phone calls from caregivers.
“Most caregivers are pretty well-versed in what they need to do,” he said. “I’ve fielded a few questions about procedures, but nothing has been an emergent thing.”
Umentum noted that the rise of Zoom, Skype and other online connections has helped the caregiver program in some ways.
While caregivers can’t come into the hospital to take advantage of respite programs, they can take part in support groups without having to leave their homes.
“That’s been wonderful,” she said. “It’s worked out. Some have said if the support groups met in person, they may not be able to attend. It’s especially good for those who live in rural areas.
“It’s been a benefit to have caregivers who might not normally connect to get together. They can relate, connect with one another and share strategies.
“The main thing is we appreciate all that the family caregivers are doing.”
For more information on the Caregiver Support Program, click here.