Most of us spend years mentally preparing for the fact that we will eventually have to care for our aging parents. But for millions of us, the unthinkable happens – a terrible car accident, a devastating cancer diagnosis – and suddenly we are caring for a younger family member.
Taking care of a younger person, even if that person is only a few years younger than you, can make you feel even more alone in what’s already a lonely experience. Especially when everywhere you turn, you’re met with advice that fits the stereotype of a traditional caregiver: a middle-aged woman who cares for her elderly parents or a spouse.
I know something about this myself, as a woman approaching middle age and a part-time caregiver to a family member in her 30s with cancer. I’ve found that few of my contemporaries understand what I’m going through.
But I am not alone.
At least 5.6 million U.S. adults have provided unpaid care to an adult family member or friend who was 18 to 49 years old, according to the National Alliance for Caregiving. Six in 10 of those caregivers are female and, on average, about 43 years old caring for someone who’s 36. It’s quite likely they have become caregivers suddenly.
Becoming a caregiver overnight
“These caregivers often have no idea what to do,” says Pamela Wilson, a social worker who works as caregiving expert and advocate in Golden, Colo. “It benefits them to find a caregiving advocate or care manager who can direct them, because many times they have no idea where to start, or they have research fatigue, or they just don’t have time to do anything else.”
Then there’s the uniquely painful experience of watching a young person suffer…It’s unbearably unjust and makes for a situation filled with anguish.
As a caregiver, you also need to pay attention to your own mental health. You may become isolated from friends who have yet to experience a loved one’s mental or physical issues. Your contemporaries may be intent on growing their careers or starting and caring for families. You may be too, adding still more stress to the situation.
Then there’s the uniquely painful experience of watching a young person suffer, perhaps even dealing with end-of-life issues. It’s unbearably unjust and makes for a situation filled with anguish.
Know that you may be prone to depression during this time due to the loneliness, loss and overwhelming, hard work.
What you thought this part of your life was going to look like is no longer the case. You may have felt you could exercise some control over unknowns in the past: Being competent at your job could bring job advancement; researching a problem could help you solve it. All that may not be able to change the situation of the person you’re caring for. And that’s a helpless feeling you may not have experienced before.
Look for specialized help
Wilson advises all those who are caregivers – no matter who they look after – to join support groups that specifically cater to your loved one’s illness. Join support groups specific to caregivers of all stripes as well, she says.
“You wouldn’t care for someone with dementia in the same way you would for someone who has cancer,” Wilson says. “What these caregivers have to do is specialize in those issues.”
I feel guilty right now because I can’t truly understand what my relative is going through. I sometimes feel helpless that all I can do is simply be present.
But I also know that’s important. I can hold her hand. I can help her form a plan for the next treatment. And I can be her cheerleader.