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)

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13 Comments

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Luce

where i live (not my home state) there is a deeply rooted ,based i think on rural traditions as well as religion ,belief that you must bear things. considering the large amount of elderly here,you cannot seem to get into anything deep about what someone is feeling. \r\n also- am i right denise that you were here recently at brethren village?

Denise

So... This discussion about levels is fascinating to me!! I've been thinking about your comments_mysql. We also spoke about this on tonight's talk show.\r\n\r\nI actually have a much broader definition of a caregiver. When I wrote The Caregiving Years, I used the term \"caregiver\" in every stage of the experience. Because the sooner you look at yourself as a caregiver, the sooner you'll look at what you're doing in a more helpful, proactive way. And, because the caregiving role becomes more and more intense, I felt it important to call an individual a caregiver, even when they're not doing any caregiving. \r\n\r\nI want everyone to think of themselves as a caregiver. If you think of yourself as a caregiver even before it begins, I hope you'll be better prepared for when it gets really, really hard.\r\n\r\nI really believe a broad definition of caregiving serves us all because it helps the experience become mainstream. It's not something that happens to \"them\"--it's something that happens to all of us.\r\n\r\nIf we're all family caregivers, then we don't wonder if we should get help or if we should ask for help or if our situation is tough enough to warrant help. \r\n\r\nWe're family caregivers, we're managing medical situations, we get help. And, we help each other. :)\r\n\r\nHere's the synopsis of The Caregiving Years: http://www.m40.siteground.biz/~caregiv6/the-caregiving-years/

EllysGdaughter

I think the levels are what the caregivers determine for themselves. For example, i just call in so i am not a real caregiver like \"Mary\" who does all the shopping. As an aware caregiver, i don't see levels!

Denise

Pegi--Your comments_mysql are just what lead me to wonder: If almost 40% of adults are family caregivers, why don't you feel more understood and supported? If the numbers are correct, I would think you would encounter others who have been in the trenches. Your experience (and others like this) are why I can't get the numbers to add up.

EllysGdaughter

I like Pegi's thoughts but also was thinking that in my experience, loneliness comes because I don't want to be negative when I speak with friends so I don't share and my friends don't ask so therefore, I feel lonely. I can share with AH but that doesn't support me like peers would, it's different. I am amazed at how many people I talked with this month, July alone who didn't realize they were caregivers and I was the one to enlighten them and offer them support and the resources I have found! These are people within my neighborhood, family and church! I don't think having levels of caregiving help because then we try to assign value, everyone who gives care is a caregiver. I want to encourage even the ones who just call to chat with a caree on a regular basis to see themselves as valuable caregivers!

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