|One of the toughest jobs in the world is taking care of someone with a disease. It is an around the clock responsibility that often exacts a steep emotional and physical toll on anyone whose life has been turned upside down.
For the past 12 years National Family Caregivers Month in November, organized by the association bearing the name, has been nationally recognized by the president of the United States as a time to thank, support educate and empower family caregivers. NFCA has reported that more than 50 million Americans care for loved ones with a chronic illness or disability or the frailties of old age.
ALS chapter commemorates Kansas couple
The ALS Association's Keith Worthington Chapter in Mission, KS is paying tribute to caregivers Bob and Margie Zwiesler of Wichita, KS who are taking care of their 46-year old daughter, Mary Kay Stilwell and consequently her children, ages 15 and 17.
Stilwell was diagnosed with ALS (amyotrophic lateral sclerosis or Lou Gehrig's Disease) in 1993. The progressive neuro-degenerative disease affects approximately 30,000 Americans annually, according to numbers gathered by the ALS Association. The survival rate of most stricken with the disease is two to five years from the time of the diagnosis. The Zwiesler family has been providing care for Stilwell with the assistance of the branch of the Keith Worthington Chapter in Wichita for at least 10 years with in-home care for the past two years.
Pride may prevent many caregivers from accepting help, despite the risk to their own health, but chapter officials encourage taking advantage of their services. "We constantly remind these courageous people that they do not have to be alone in this journey," advised Sharon Matland, vice president of patient services for the ALS Association. "We train and provide ongoing support so people feel comfortable in using one of our newest programs, Care Connection, which can significantly lift the burden."
A centerpiece of Care Connection are the tools, training and free online scheduling that can be found at the association's Lotsa Helping Hands website. In part it offers a simple way for families facing the challenges of long-term care giving to communicate with one another.
Many of the association's chapters offer respite programs to provide family caregivers time away from the homes and their responsibilities. Caregivers may use the time, from a few hours to a full day or more, to take care of personal matters, catch up with family and friends and have a chance for their own rest and relaxation.
The Zwieslers say that they provide themselves with all important self care by continuing to exercise regularly at their local YMCA or walking with a neighbor and her dogs. But, says Bob Zwiesler, challenges do come up and "it's hard to find time for ourselves." Nevertheless, both Bob and Margie Zwiesler report that being able to provide "the best care in the world" for their daughter is rewarding.
It is estimated that the value of the free service family caregivers provide annually is more than $250 million. The price caregivers eventually pay by compromising their own health transcends dollars.