If There's So Many of You, Why Is Caregiving Still So Lonely?

Denise

If There's So Many of You, Why Is Caregiving Still So Lonely?

Denise
lonely-19318_640Pew Research Center released a study last month that says about 39% of U. S. adults–up from 30% in 2010–care for an adult or child with significant health issues.

In other words, two in every five individuals are family caregivers.

I've been thinking about this number because I can't quite get it to add up.

Here's why. If 39% of U.S. adults are family caregivers, why is caregiving still such a lonely and isolating experience? Why is Ketzela writing a post about how few people understand and support her decisions? Why, every year in our annual family caregiver survey, do you talk about the loneliness of the experience? Why haven't more programs and services been added in your community to help you? Why do you still worry about telling your boss about your caregiving responsibilities? Why does AtisMOM write about disappearing family members? Why doesn't the doctor's office share a list of caregiving resources to help you? Why doesn't a home health agency refer you to a website, like ours, so you can connect with others in a similar situation? Why can't @tiredamy2007 (Amy) find a family restroom so she can assist her father?

Why is caregiving still an experience that feels like it's just you rather than one that feels like it's you plus (and within) a community that supports?

With numbers like 40% of  the U.S. population in a caregiving role, I would think you would feel like you're in good company, that others would regularly share resources that can help you. More important, I would imagine, because of the numbers, you would feel understood and supported--at home, at work, with your friends, in health care settings, in your community.

Four years ago, I wrote a commentary called "Does Caregiving Cause Withdrawal?" I wonder if we've made any progress in connecting family caregivers to support and help. A quick look at our annual survey, now happening, shows that you are very unhappy with programs and services in your community.

All this takes me back to that figure--39% of U.S. adults care for a family member. Here's how Pew Research Center defines caregiving:

"39% of U.S. adults provided care for a loved one in the past 12 months, which could include helping with personal needs, household chores, finances, or simply visiting to check in."

I have two brothers and two sisters. When our parents need care, I would imagine each will tell a researcher that they are a family caregiver. So, that number (five of us are family caregivers) skews the statistic. So, of those 39%, how many care for the same caree? Are we double-counting caregiving experiences? Should researchers be asking who, of all those involved in a caregiving experience, is the primary family caregiver?

Does that matter?

Because I'm still struggling to understand this: If caregiving is such a common experience, as the numbers indicate, why do you still feel alone? What do you think? Please share your thoughts in our comments section, below.

Resources

Eleven Years Later, Caregiving Is Still Difficult (and Getting More Difficult)