Why Can’t Family Caregivers Count on More Than Their Faith?

We finished our second “stress-share” campaign on CareGiving.com last week — a five-day event during which individuals who care for a family member with a chronic illness or disability (“family caregivers”) share about that day’s caregiving stress.

I’m left again with the question I've been asking for years: Why does caregiving have to be so stressful? Why can’t we offer real help in our communities to minimize a family caregiver’s stress.

We know that family caregivers feel stress day in and day out. In our Family Caregiver Stress Survey, 78% of respondents rate their stress level as a 4 or 5 on a scale of 1 to 5. (The weighted average is 4.14.) We know that we have at least 44 million family caregivers in the U.S. That's a huge number of stressed-out individuals.

Family caregivers don’t have enough time or money, can’t sleep at night, provide care to a family member even as their own health suffers and really, really miss their lives.

“Siblings and extended family don’t help,” a responded shared in our survey. “My health physically and emotionally has declined. I’m 49, I don’t have time or energy for friendships or much of anything. I’ve lost friends. I’ve gone into debt since caregiving began six years ago when Mom’s dementia started. In the past three months, the other parent has had falls and health issues. I’m overwhelmed with my to do list of responsibilities.”

“My caree is a child so we spend time fighting the school district for services,” another told us in the survey, “and I also feel stressed about balancing my time with him as his mom and caregiver.”

“It’s all out of my control and I can’t do anything right for enough people because the system doesn’t work right,” another wrote. “I can’t help them anymore. They have a right to make bad decisions.”

Another respondent said: “Trying to keep up with paperwork, doctors, house keeping, a parent who has never completely grown up, family members out having fun while I deal with the bad stuff, no social life, not enough money. Can’t even remember what day it is sometimes and getting criticism because I cannot stay on top of everything. My doctor wants to know why I keep having to cancel my appointments.”

I just find it horribly ironic that a family caregiver, entrenched in the health care system because of her care for a family member, can’t actually use the health care system to care for herself. Why isn’t her care part of her caree’s care plan? A family caregiver’s well-being is critical to a caree’s health. Even more important, a family caregiver’s well-being is critical to her own future — family caregivers deserve good health in their futures. And, if you want to bring in the system’s bottom line — the dollar — then you have to acknowledge that providing access to her doctor now saves the system money later.

I often think of another respondent who wrote: “Sometimes I wonder how we survive. We just keep on going like the little bunny energizer and I know God watches over us. I am so sleep deprived sometimes I run into things. Somehow we will all get through this. God bless and watch over you.”

Why do family caregivers seemingly have only their faith to count on? Why isn’t the health care system, our communities, our government, our employers helping?

We work hard at CareGiving.com to bring out these issues and provide our ideas for solutions. And, our First Annual Caregiving Conference on December 3 in Chicago is another way to put the stresses of caregiving center stage. Through our conference, we want to spark important conversations about what we need as family caregivers and former family caregivers in our communities, our workplaces and our health care system. Because of the conference, we want to channel our collective energy into a movement, causing a change in our communities and systems that give family caregivers much more than their faith. We want solutions that help make the day easier, financial resources that lessen the burden and options that allow family caregivers on-going and regular caregiving breaks so they can keep a life during a life of caregiving.

We want to turn hope into a reality. We want to expand faith to include faith in their communities and their government that help — help that really helps — exists today and for every tomorrow that it’s needed.

Help us make that happen. Join us December 3 in Chicago.

Denise M. Brown launched CareGiving.com in 1996. CareGiving.com was the first website to add online caregiving support groups, daily caregiving chats and blogs written by family caregivers. Through its blogs posts, podcasts and video chats, CareGiving.com holds one of the largest online libraries of caregiving stories. Denise also hosts a Twitter chat for family caregivers (#carechat) on the first and third Sundays at 8 p.m. ET. Denise began working with family caregivers in 1990 and regularly speaks about the family caregiver experience. Her insights have been featured in , , , , SmartMoney.com, magazine and . Her books, including and provide insights, inspirations and information to those who care for family members. She currently cares for her parents.