Caregiving can be lonely business. The CDC finds 25% of all US adults only sometimes or never, receive the social and emotional support they need. The issue can be worse for caregivers. A study looking at caregiving of elders in the Journal of Gerontology found 12% of caregivers were socially isolated, and 27% were lonely.
Mark Applegate is a dementia care specialist for senior age in Springfield. He said the early days for caregivers and patients are a blur. People often have a lot to learn and need to learn fast.
"What most people will do, they'll get their diagnosis, they'll go home, and they'll Google it or ChatGPT it or something and find out what it says," Applegate said. "Finding accurate information should be pretty easy, but you have to wade amongst all the inaccurate information, too."
While all of that is going on, it's easy to lose track of one of the most important things he thinks caregivers need to learn — where to find their community and how to ask for help.
"Another misconception that's real common is, I can do this all myself, not realizing the need for a care team until you've been in it for a little while," he said.
Applegate said even caregivers who are doing fine can do more with help. He adds that for a patient, especially with dementia, the illness is like a marathon. For caregivers, he said, it's often like a sprint.
"They're trying to take care of the family, trying to take care of this person that's in their home and trying to take care of themselves," he said, "and the three of those things combined, something's going to give. Usually it's the person themselves. The caregiver themselves is what gives."
He said one thing he recommends everyone do is keep a list of things people can help with — running to the store, helping with yard work, whatever it may be. When someone asks if they can help, don't just assume they're being polite. Take them up on the offer. If you already have a list of things to do, it makes it easy.
Nia Howard is program and engagement leader for Burrell Behavioral Health's Be Well Initiatives. Howard knows some social norms can make it hard to ask for help.
"We need to be able to take a physical, deep breath. We need to be able to recharge and refresh," she said. "And that guilt comes in because we love the person, and we care about that person. Also, because we want to be able to do it right. If we say, oh, I'm having a hard time, that might make some people think that we can't do it or you would feel — some people have feelings of being weak or I'm not enough, right? But that's just not the case. Instead, the case is that you are human and perfectly made, and humans need that break. They need somebody that is on their side."
Maureen Templeman is an assistant professor of gerontology at Missouri State University. She teaches a class called Families in Later Life, which focuses primarily on family caregiving. She looks at the social norms around caregiving. Professor Templeman said caregiving is often undervalued in our society, which can fuel social isolation and limit access to resources.
"When strain is measured with caregivers, it focuses on physical, financial and emotional strain, and emotional strain tends to be the type of strain that family caregivers report the most. And so a lot of times that will manifest in things like feelings of isolation, feelings of loneliness, overwhelm, not being able to balance their multiple roles," she said, "so yeah, a lot of studies focus on like burden and depression among caregivers, although not all caregivers do experience those things. Often, like African American and Hispanic or Latinx caregivers do find more meaning and benefit in caregiving. And I think that's sort of a cultural thing. And so to sort of reframe the idea of caring for a loved one in our society, it really could help to counteract that feeling of burden and then also place a higher value on caregiving so that maybe there would be more incentive for, you know, federal or state governments to give benefits to caregivers. I do think it's a misconception that all caregivers are burdened and all caregivers are suffering."
Professor Templeman thinks those stories of caregiving should be more public. Mark Applegate agrees. He runs caregiver support groups for SeniorAge. He sees value fighting some social isolation by caregivers sharing their stories.
Applegate said many people retreat from caregiving communities as soon as their loved one passes. But many new caregivers may feel they are all alone in their struggles. He said he thinks both groups can benefit from a shared experience.
"Reflection is a is a big thing. You think about the things you did right. Think about things you did wrong. You can either bury that or you can share it with someone else and hopefully they don't do the same things," he said. "One thing I learned, it was very helpful for me, is finding daily joy in time with mom, instead of just dwelling on what's what's missing from her."
Applegate said that was one among many important lessons for him. One it took him a while to learn and one he thinks everyone could benefit from. He thinks caregivers have a lot to share and learn from one another and with the public at large. That begins by getting a chance to find community in family, neighbors, support groups, and wherever it might be found.