Caregivers

Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease

posted on November 19, 2013 - 11:05am
After nine years of courtship, my partner Richard and I are discussing The Future. Children, marriage and home ownership are now notching out deeper spaces in our daily dialogue. Like many couples, we’re both scared of The Future. We’re concerned we won’t be fully equipped for what may come — those ripples that may make life a little more difficult. We’ve already experienced hardships that we’ve...

A family caregiver struggles to accept what is — and what will never be no matter how hard she wills it

posted on October 3, 2013 - 9:25am
Quest Vol. 20, No. 4
Mom (top, 2011) climbed to the top of a White Sands, N.M., dune with me just two years before her muscles were too weak to support her own breath.

Receiving care without giving back can be difficult. Feeling the love makes it easier.

posted on October 3, 2013 - 9:13am
Quest Vol. 20, No. 4
Rick Raker For the entire day today, and perhaps throughout the weekend or longer if I can subdue my natural (or is it learned) character, I vow that I will accept all of the kindness, generosity, love and care given to me on this day and every day forward without guilt or a feeling of obligation.

Advice from a home health care agency owner

posted on January 7, 2013 - 9:23am
Quest Vol. 20, No. 1
In the Fall 2012 issue of Quest, we ran an article about the benefits of hiring in-home care, written by Amy Nelson, the owner of a large home health agency in the Midwest (Getting Care: There’s No Place Like Home). Among the responses we received was this one, which we forwarded to Amy Nelson for comment:

MDA’s online caregiving management tool myMuscleTeam will be the subject of a Nov. 7 webinar; MDA offers many other online caregiver resources

posted on October 31, 2012 - 5:00am
Society hasn't always appreciated the vital role fulfilled by family caregivers. It’s only been in the past 20 years that family caregivers — now more than 65 million strong — have been officially acknowledged. Every November, National Family Caregivers Month is observed in America as a time to thank, support, educate and empower these hardworking, creative and loving individuals.

Professional home care providers can reduce family caregiver burnout while providing individualized service and greater independence for loved ones

posted on October 1, 2012 - 9:00am
QUEST Vol. 19, No. 4
Jeff Stafsholt is a Green Bay Packers fan second to none. Like the Wisconsin football champs, he has a winning attitude and a “never give up” mindset. To help manage the effects of limb-girdle muscular dystrophy, Jeff has a team of home care professionals who assist the 34-year-old as he independently quarterbacks his life.

A new federal program provides personal care aides for individuals with disabilities stranded in emergency shelters during a declared disaster

posted on August 13, 2012 - 6:00am
Wildfires, windstorms and floods have been in the news regularly this year. What if such a disaster suddenly hit your neighborhood? Would you be prepared?  Planning ahead for emergency situations is especially important for people who have disabilities that affect mobility and self-care. You are in the best position to plan for your own safety and well-being since you know your functional...

Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults

posted on October 1, 2011 - 3:32pm
QUEST Vol. 18, No. 4
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.” His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp. “We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...