To get the best of the best advice and resources, we tapped Lisa Nigro, who is a full-time caregiver to her 30-year-old son, Nick. Here’s what she had to say.

Lisa and Nick’s Story

No parent ever expects to have to administer CPR to their own child. But when Lisa Nigro found her then-23-year-old son, Nick, unresponsive in his room on Halloween night in 2015, she didn’t hesitate. As she labored to save her son, an ambulance arrived. It carried Nick away to the hospital, where he hovered in the thin space between life and death. Eventually, Nick’s family learned that a virus was the most likely cause of a heart attack that had starved his brain of oxygen. He would never quite be the same again, the doctors said. And just like that, Lisa found herself in the role of full-time caregiver for Nick. Lisa scrambled to learn as much as she could about anoxic brain injuries and how to best care for her son. She started by learning as much as she could from the nurses in the rehab facility. “They were amazing,” she says. “I would just ask questions all the time.” Then she set out to find other resources to help her. “In the beginning, it was hard to find any information at all about anoxia,” she remembers. But she didn’t give up. “I started doing research right away.” She sought out medical libraries. She called doctors. She reached out to alternative medicine practitioners whom she knew from her work as a massage therapist. And she got online to find support groups to provide her with wisdom and guidance. Here’s an example of how comprehensive Lisa’s approach became: When a surgeon placed a gastrostomy tube, or G-tube, into Nick’s belly to provide a way to feed him, Lisa paid close attention. Then she went online and searched for information about G-tubes. She found online support groups and asked for information about how to use the G-tube. Then she applied what she had learned. Lisa kept learning—she even became a certified caregiving consultant, because she was committed to the idea that you can figure things out and find light. “By nature, I’m not a pessimist. I’m a very real person. I know that this happened. My son is not going to be the same person,” says Lisa. “But I also know that Nick 2.0 is incredible. He shows up in the world, and he makes a huge impression with his presence.”

Lisa’s List of Resources

Now that she’s been a caregiver for Nick for many years, Lisa has amassed a great deal of knowledge about Nick’s particular injury. But she’s also learned a great deal about caregiving and she’s willing to share her knowledge with others who may need some guidance.

Websites

Lisa has often turned to online resources for information about anoxic brain injuries, and she recommends doing a search for disease- or situation-specific information that’s relevant to your family. She also recommends the following resources to anyone who’s embarking upon a caregiving journey: Protected Tomorrows. Lisa recommends this site for its educational tutorials on topics like applying for government benefits such as Medicaid and disabled adult child benefits. Happy Healthy Caregiver. Lisa’s a big fan of Elizabeth Miller, this resource’s founder, who has experience as a caregiver for her chronically ill mother. Plus, this website has a wealth of resources that might help you. Today’s Caregiver. You can find just about anything on this website for caregivers: news, information about conferences, resources about caring for yourself as a caregiver and online support communities (even a book club). The Caregiving Years Training Academy. If you’re new to caregiving, this might not be for you. But if you’ve got some experience under your belt, you might be interested in taking that experience and becoming a caregiving consultant who helps others. Inspire.com. This website bills itself as “the world’s largest and fastest-growing health community.” Find a community of people who share your experience. There are communities for people with long COVID, ovarian cancer, lung cancer and more. You can also learn more about research collaborations that might be relevant. Help Hope Live. Explore community-based fundraising for individuals who have costs related to illness or injury. You can also learn more about Lisa’s son Nick and their journey on Nick’s page on Help Hope Live.

Instagram and Facebook

Instagram, TikTok and Facebook can also be great resources for caregivers. Do a quick search for injuries or illnesses or even locations, or you can turn to accounts that are more generally focused on caregiving. You can search by hashtags like #caregiving. Lisa recommends the following: @yoga4caregivers. Yoga4Caregivers is a great Instagram resource focusing on caregiver wellness including—yes, yoga—since you have to take care of yourself to be able to care for anyone else.
@Caregivingadvice. Caregiving Advice is a good place on Instagram to go for regular “chats” about caregiving. Anoxic Brain Injury Caregivers. This Facebook page welcomes anyone interested in discussing anoxic brain injuries and taking care of people who have them. @Caregivingnaturally. Venture to Lisa’s Instagram account about caring for her son. Next up: From Journaling to Taking Time Off, Here Are 15 Habits Happy Caregivers Swear By