Sunday, February 03, 2008

Family Caregivers Are Speaking Up

I was fascinated today while listening to a recent health-related interview on NPR's Fresh Air with Terry Gross. The subject of the interview was Suzanne Mintz, author of the new book, A Family Caregiver Speaks Up, and co-founder and president of the National Family Caregivers Association.

Ms. Mintz is the wife and caregiver of her husband, a man living with Multiple Sclerosis since 1974. Over the course of the interview, she recounts harrowing tales of hospital discharges devoid of planning, of caregiver burnout, of turning to neighbors in emergent circumstances to assist with transfers and other activities of daily living. Ms. Mintz laments the American healthcare system's apparent blindness to the acuity of patients as they are discharged to home with woefully unprepared families and caregivers shouldering the burdens of increasingly complex care.

The subtitle of Mintz's book, "It Doesn't Have to Be This Hard", speaks to the fact that Mintz is a caregiver who cares about other caregivers, and has penned a book with the goal of providing resources and empowerment to those responsible for the care of loved ones living at home. Additionally, The National Family Caregivers Association appears to offer resources, connection, Pen Pal programs, advocacy, volunteers, workshops, trainings, and much more to the tens of millions of Americans who choose to care for their loved ones in this Herculean manner.

During the course of the interview, Mintz lamented the lack of seasoned professionals who can coordinate the care of chronically ill patients and provide support and resources to families. Having recently left my job with a Disability Care Coordination Organization (DCCO), I would like to know what experiences Ms. Mintz and her organization have had with DCCOs---if any---and how her organization and various DCCOs could partner with state and federal government to improve care management programs, and to increase access to such programs for families across the country.

Providing care for a chronically ill loved one at home is no small undertaking these days, and while sick family members were generally cared for at home throughout the early twentieth century, doing so in this current economic climate has become next to impossible for so many families. Hard evidence is available that the majority of home foreclosures and bankruptcies in this country are not caused by frivolous spending and credit card use on the part of homeowners. People in this country are losing their homes due to the high cost of healthcare and from losing their jobs and careers due to illness. Astronomical medical costs, a sour economy, a pharmaceutical industry run amok in the halls of Congress, and a healthcare system driven by profit and market forces have all contributed to untold suffering for patients and caregivers alike. It is a sad state of affairs, and heroic people like Mintz are working hard to assuage that suffering, one family at a time.


Care Buzz said...

Keith - Very good. Thank you for your recent post on lack of professionals coordinating the care of chronically ill patients and provide support and resources to families -

During my time of caring for mom and dad, it was extremely difficult to coordinate post hospital care. The hospital just told us.."they are released now, the doctor said they can go home now!" "Now?" we screamed. "What do you mean now?"

We indeed had to scramble for help and setting up thier home to accomodate them. But with great effort, I add. We found state agencies with good intentions but little help.

That's why we're putting together a directory for working family caregivers. Hopefully, we can find quality resources you're talking about and list for families.

Carol Marak

A Journey Well Taken: Life After Loss said...

What a wonderful, enlightening story. I was a caregiver for my husband (esophagus cancer) for only 11 months, and not only is it draining financially, it is draining on the caregiver emotionally and physically. Many times this part of caregiving is not even addressed.

Keith "Nurse Keith" Carlson, RN, BSN, NC-BC said...

Thank you both, Carol and Elaine. It looks like both of you are doing great work in the world and I encourage anyone reading this comment to follow the links to Elaine's and Carol's websites.