Transitioning into the role of caregiver can be confusing, scary and overwhelming. This is where great resources come into play. From websites to social media accounts, there is a wealth of information that can help you feel supported on your journey.
For the best advice and resources, we tapped into Lisa Nigro, who cares for her 23-year-old son Nick full-time. Here’s what she had to say.
The story of Lisa and Nick
No parent ever expects to have to resuscitate their own child.
But when Lisa Nigro found her 23-year-old son Nick dead in his room on Halloween night in 2015, she didn’t hesitate. As she struggled to save her son, an ambulance arrived. It carried Nick to the hospital, where he hovered between life and death.
Eventually, Nick’s family learned the likeliest cause of a heart attack was a virus that had starved his brain of oxygen. He would never be quite the same again, doctors said. And so Lisa found herself in the role of Nick’s full-time caregiver.
Lisa strove to learn as much as she could about anoxic brain injuries and the best care for her son. She began by learning as much as she could from the nurses at the rehab facility. “They were amazing,” she says. “I would just ask questions all the time.”
Then she went in search of other resources to help her.
“In the beginning, it was difficult to find any information about anoxia at all,” she recalls. But she didn’t give up. “I started researching right away.”
Related: The cost of caregiving: New statistics reveal how caregiving really impacts mental health
She went to medical libraries. She called doctors. She turned to alternative medicine, whom she knew from her work as a masseuse. And she went online to find support groups that offer her wisdom and guidance.
Here’s an example of how comprehensive Lisa’s approach became: When a surgeon inserted a gastrostomy tube, or G-tube, into Nick’s abdomen to give him a way to feed him, Lisa paid close attention. Then she went online and looked up information about G-tubes. She found online support groups and asked for information on using the G-tube. Then she applied what she had learned.
Lisa continued to learn – she even became a certified nursing consultant because she was committed to the idea that you can find things out and find light.
“I’m not a pessimist by nature. I’m a very real person. I know this happened. My son will never be the same person again,” says Lisa. “But I also know that Nick 2.0 is amazing. He shows up in the world and makes a big impression with his presence.”
Lisa’s resource list
Now that she has been caring for Nick for many years, Lisa has gained a lot of knowledge about Nick’s particular injury. But she’s also learned a lot about grooming and is willing to share her knowledge with others who might need some guidance.
Lisa has often turned to online resources for information about anoxic brain injury, and she recommends searching for disease- or situation-specific information relevant to your family. She also recommends the following resources for anyone embarking on a nurturing journey:
(scroll to read more)
Sheltered Tomorrow. Lisa recommends this site for her educational tutorials on topics such as applying for government benefits like Medicaid and benefits for disabled adult children.
Happy healthy caregiver. Lisa is a big fan of Elizabeth Miller, the founder of this resource, who has experience caring for her chronically ill mother. Also, this site has a wealth of resources that might help you.
Today’s caregiver. This site has almost everything for caregivers: news, conference information, caregiver self-care resources, and online support communities (even a book club).
The Caregiving Years Training Academy. If you are new to nursing, this may not be for you. But once you have gained some experience, you may be interested in using that experience and becoming a nursing advisor helping others.
to inspire. com. This site bills itself as “the world’s largest and fastest growing healthcare community.” Find a community of people sharing your experiences. 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 expenses related to illness or injury. You can also learn more about Lisa’s son Nick and her journey on Nick’s page on Help Hope Live.
See also: “I was a remote caregiver at 28 – here are 7 steps to prepare for your own caregiving journey”
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 contact accounts that are more generally focused on care. You can search for hashtags like #caregiving.
Related: Whether you’re a caregiver or know someone who is, these 12 books and films will find your home
Lisa recommends the following:
@yoga4caregivers. Yoga4Caregivers is a great Instagram resource that focuses on caregiver well-being, including – yes, yoga – because you need to take care of yourself in order to care for others.
@care advice. Caregiving Advice is a good place on Instagram to have regular “chats” about caregiving.
Anoxic brain injury caregiver. This Facebook page welcomes anyone interested in discussing anoxic brain injuries and caring for people who have them.
@Caregivingof course. Visit Lisa’s Instagram account to take care of her son.
Next up: From journaling to taking time off, here are 15 habits that happy caregivers swear by