The CDC says 27% of caregivers are lonely. Mark Applegate is a dementia care specialist for SeniorAge in Springfield. He was also a caregiver for his mom for years. He said social isolation for caregivers and patients isn't just sad, it can kill. The NIH and APA agree. They publish reports indicating that isolation increases risk for all health issues. Applegate said we're social creatures. People need other people.
"Without a doubt, you can't, you can't do it yourself," he said. "And even if you can, you can do it better with other people. Doesn't matter if you're an RN for a living or if you're a farmer for a living, having more people help is better than having less people help. I think it's by far the biggest piece of advice."
He said caregivers often ignore their own needs, and he has seen that result in caregivers passing away soon after the person they cared for or even before. The isolation a primary caregiver feels can also cause tension with the rest of the family, especially if they are caring for kids who have their own important milestones that are hard to compare to the challenges of caregiving.
"It's another level of this whole issue is, a lot of people are sandwich generation parents, so a lot of people in their, say, 30s, 40s and 50s are dealing with taking care of their parents like I was," he said. "I have three kids — trying to still be able to go to their stuff, to trying to be empathetic to their problems, too. I'll tell you another (way) it's really challenging as a parent is spending two hours with your mom who's dying and then coming home and having your child have something that is equally, to them, critical and you not have enough emotional bandwidth to help very well. There's times I think I did a terrible job in empathizing with my kids. You're skipping this, you're failing to do this and that. A lot of guilt comes in with that, whether it be as a parent or as the caregiving side. One side of that is going to give."
Applegate is thankful for his family's support and thankful his siblings were able to share responsibilities when his mother became increasingly affected by dementia. That's another relationship that can be damaged by the social isolation of caregiving. One thing they couldn't have prepared for, though, was the isolation of COVID, but it also taught him a powerful lesson.
"In 2021, mom was on hospice care again, and COVID was happening pretty hard, you know. They called us in one day, and the nursing home and said, it looks like your mom's going to pass away this weekend. She had some seizures, and she's really struggling, different signs that hospice people can give you, you know, to warn you that it's likely, the end's going to come. They said — and we've been doing window visits for six months at this point where they didn't let people in the building at nursing homes. They said during, in this circumstance, we'll go ahead and let you, we set aside a room, and we use a lot of Germ X on the room and stuff to make sure where it's safe for you to come in, you can spend the last time until she passes away with her, you know," he said.
"She was — legitimate, and don't hear me wrong, and me saying this, I didn't — I had nothing to do with curing her or something like that or keeping her from dying, but in a way that me and my siblings went there and hung out with her. We expected this to be our last weekend with her, her last day with her. We played those songs on her phone, laughed and talked. And she was awake. She wasn't in a coma, but she was just doing poorly, you know? Six, eight, 10 hours passed, and nurses kind of come by. Anything else we do for you, you know? No. No problem. Well, they said, well, you know, spend the night here. It's fine. You know, they gave us a roll out bed. You know, we sleep on the bed and visiting and talking and day two is here, and they're still coming by, like, she seems to be you know, not passing away, right? No, she's not. And day three, they finally said, you know, we, she's perked up to the point that we think we may have been mistaken, that she's not going to pass away. And that kind of thing happens to a lot of people in different levels of caregiving, is that you expect, you steel yourself up that, okay, one of these days she's going to pass away or he's going to pass away, said Applegate.
"You start preparing in your mind, this is how it's going to play out, and it's out of our pay grade to figure out how it's going to play out. They sent us home on day three and said, we're sorry to, and we're glad to be able to let you spend time with her, but we have to send you out again because of COVID. Someone else needs this room because they're probably going to pass away. And she lived another two years, you know. One thing you can learn from that story is she was probably dying because partially because of isolation, because she had only seen us through the window for after seeing us every single day for years. For several months, I forget how many months it was, so isolation was legitimately killing her, not just theoretically, it was she was wearing out. But it also shows the power of being able to love on them and to, you know, share the old stories and just share life and stuff, you know?"