Finding caregiver support isn’t easy, but it’s worthwhile

Family caregivers are stepping into the spotlight with a new, two-hour PBS documentary premiering on June 24.

“Caregiving,” produced in cooperation with the Caregiver Action Network and George Washington University among others, “examines caregiving from multiple perspectives, taking an intimate look into the lives of caregivers and their relationships with those in their care.” It will also look at ideas for innovation and reform.

It’s about time. Family caregivers are the unsung heroes of the fractured American health care system.

According to the Caregiver Action Network (CAN), some 90 million of us are caring for loved ones with chronic conditions, disabilities, disease or the frailties that come with aging. This includes parents caring for children with intellectual or developmental disabilities, and family members caring for those with mental illness.

Caregiving is often tremendously rewarding, but it’s also a drain on time, energy and finances, as I know from my experiences as a private patient advocate. There are resources out there to support caregivers, but you can’t wait for them to find you. Rather, you have to do the legwork.

Here are some resources that may be able to help support you in your caregiving. If you have found others, I would love to hear from you.

Caregiver Action Network: This may be a good starting point. CAN (caregivernetwork.org) is a national organization that was founded in 1991 by two caregivers — one whose husband had MS and the other whose mother had Parkinson’s. You can think of CAN as a clearinghouse or a hub for organizations that are specific to respite care, Alzheimer’s, addiction and many disorders.

Areas Agencies on Aging: These were created by the Older Americans Act to bolster the care of the elderly. Again, this is a clearinghouse of resources, including respite care, caregiver training and meal delivery. In Illinois, the AAAs are divided into 13 sectors, including one each for Chicago and Cook County, and one encompassing the surrounding counties from Lake down to Kankakee. The Illinois Department of Aging (ilaging.illinois.gov) is the place to start.

Just about every disability and health condition has an organization or foundation behind it: the Alzheimer’s Association, the Parkinson’s Foundation, the American Cancer Society. They can hook you up with local chapters that have caregiver resources. By the way, the Parkinson’s folks call caregivers “care partners,” which I rather like. “Partner” implies all parties are getting something back.

There are also many online caregiver support groups, forums and Facebook groups. Look at the CAN website or do a web search for groups that best suit your needs.

Let’s look at some local resources.

Faith communities: Churches, synagogues and mosques can be sources of help and support. They may not be trained in caregiving or respite care, but they can lend a shoulder to lean on, even cry on and a listening ear. One example is Stephen Ministers, who are trained and based at Christian houses of worship to serve those experiencing personal crises.

Memory cafés: Did you know there are places in Chicagoland where a dementia patient can go for socialization and caregivers can go for a little break? Visit the Illinois Cognitive Resources Network (ICRN), ilbrainhealth.org, or Dementia Friendly America (dfamerica.org) to learn more. Do confirm times and locations before heading out, as they are subject to change.

Finally, did you know that it’s possible to be compensated as a family caregiver under Medicaid? (There may be changes coming to Medicaid under the federal spending bill now in Congress, so strike while the iron is hot.)

In Illinois, the Consumer Directed Personal Assistance Program (CDPAP) and the Home Services Program (HSP) are Medicaid programs that allow individuals with disabilities or chronic illnesses to receive paid in-home care, including potentially by family members.

There’s an application process and training. Visit the Illinois Department on Aging’s Community Care Program for more information.

Speaking of getting paid, I think family caregivers should have a conversation with other family members about the care they’re providing, the out-of-pocket costs they’re incurring and the income they may be missing because of having to cut work hours. If you’re reading this and there’s a caregiver in your family, consider compensating them for what they do.

I have the highest respect for caregivers everywhere. I wish there was a simpler way for you to find support and resources, but — for your own sake — don’t feel you have to do everything on your own.

• Teri (Dreher) Frykenberg, a registered nurse, board-certified patient advocate, is the founder of www.NurseAdvocateEntrepreneur.com, which trains medical professionals to become successful private patient advocates. She is the author of “How to Be a Healthcare Advocate for Yourself & Your Loved Ones,” available on Amazon. Frykenberg offers a free phone consultation to readers. Contact her at Teri@NurseAdvocateEntrepreneur.com.