Caregiving for Caregivers

Their ranks are huge, growing…and exhausted. Some 53 million Americans are family caregivers who provide care for an adult or a child with special needs.  Caregiving has always been difficult, but according to a 2020 joint report from the National Alliance for Caregiving and AARP, the challenge of caregiving has gotten even more difficult recently, for a number of reasons.

The 2020 report found more caregivers are caring for multiple persons. It’s also difficult for them to negotiate the healthcare system. Services are often fragmented, and inflation is boosting the costs of healthcare services.

A 2021 study found that three-quarters of family caregivers spend an average of $7,200 a year on out-of-pocket caregiving expenses. Caregivers often contribute to the family member’s rent or other housing costs, for housing modifications and for health care.

Caregiver exhaustion is prevalent, and caregiver burnout is a dangerous reality.

A National Strategy for Caregivers? 

Caregiver exhaustion is prevalent, and caregiver burnout is a dangerous reality.

Comments from the public on the National Strategy to Support Family Caregivers are being accepted through November 30, via this online form.

Soon, more relief may be here, if the federal government acts. It is now accepting comments on the National Strategy to Support Family Caregivers. This strategy, intended as a national roadmap to recognize and support family caregivers, outlines nearly 350 actions the federal government will take to support family caregivers in coming years. It also includes more than 150 actions other levels of governments, as well as the private sector, can take.

Comments from the public on the National Strategy to Support Family Caregivers are being accepted through November 30, via this online form.

Will it help Caregivers? 

Will this new game plan make a difference? The document says it contains nearly 350 actions that 15 federal agencies will soon take to implement the strategy.  However, John Schall, CEO of the Caregiver Action Network, a national organization devoted to improving quality of life for caregivers, is not overly enthused. “The national strategy is not likely to have a large impact,” he tells Senior Planet.

“It is certainly a comprehensive list of individual actions the federal government currently undertakes  – but it does not make recommendations for future action,” Schall says. However, he adds, “It is worthwhile for individuals to file comments if only to let federal policymakers know we are watching closely and expect useful action that will benefit family caregivers.”

Other Caregiver tips

“Make time for self-care, especially if you feel you don’t have time for it. That means you need it more than ever.” 

Even without federal action, a caregiver can do much  to reduce stress and do a good job of caretaking, says Linda Abbit, a caregiving expert who wrote The Conscious Caregiver (Adams Media, 2017; kindle) and was a family caregiver for some 20 years. Her book advises caregivers on how to provide the best care for their loved one without losing themselves in the process. The subtitle explains how: “A Mindful Approach to Caring for Your Loved One Without Losing Yourself.”

She talked to Senior Planet and summarized her best tips:

• “Listening is so important; it isn’t just the words you are hearing but the feelings underneath them,” she says. If the loved one is older, it’s especially important to give them time to express their thoughts and fears. One may very well be fearful of losing their independence, she says, and it’s understandable.
• Caregivers should aim to create a circle of support, a caregiving team. “Most caregivers don’t want to ask for help,” she says, “but hopefully the pandemic taught us we all need help at some point.” For that circle, she suggests, turn first to closest family members, siblings, your spouse and long-time friends. “Don’t overlook in-laws and children, at least from teens on up.”
• It’s crucial to take care of yourself, she says. “Make time for self-care, especially if you feel you don’t have time for it. That means you need it more than ever.”  She’s not talking just about medical checkups, although it’s crucial for the caregivers to stay on top of their own medical care.

She suggests setting aside time for self care—‘’every single day.”  Try starting with five minutes a day, if it’s difficult to do. “Do something you are passionate about.” And you define what that is, whether it is a favorite song, movie, bubble bath or phoning a friend.

Caregiver Action Steps

One easy way for caregivers to take a break is with an online community. Senior Planet’s discussion groups offer many opportunities to share thoughts, possible solutions and build community for a variety of audiences, including Spanish speakers and the LGBT+ community.  Moderator Pat Whitty’s Finding Purpose, Wellness and Community After 60 is one example of many. To find this group or others, visit https://seniorplanet.org/social/

Know a caregiver struggling to afford an internet connection? Tell them about the Affordable Connectivity Program; details are here.

If you’re a caregiver, or know someone who is, add your voice to the recommendations for action. Comments from the public on the national strategy are being accepted through November 30, via this online form. 

Are you a caregiver?  What has helped you? Let us know in the comments.

Kathleen Doheny is a Los Angeles-based independent journalist, specializing in health, behavior, fitness and lifestyle stories. Besides writing for Senior Planet, she reports for WebMD, Medscape, Endocrine Web, Practical Pain Management, Spine Universe and other sites.  She is a mom, mother-in-law and proud and happy Mimi who likes to hike, jog and shop.

Doheny photo: Shaun Newton
This article offered by Senior Planet and Older Adults Technology Services is for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding any medical condition. If you think you may have a medical emergency, call your doctor or 911.