Special focus on long-distance caregiving
\http://www.alzheimers-illinois.org/enewsletter/may2013/caregiving.asp
Nearly 15% ofcaregivers for people with Alzheimer’s or another dementia are long-distance caregivers.
Mabel Bennett’s unyielding determination in the face of dementia was both a good and bad thing, her daughter Kelle Riley said.
On the one hand, Bennett’s need to appear vibrant and undiminished likely helped her hold on to many of her faculties longer than someone without the same resolve. But it also made knowing her limitations much more difficult, especially for Riley who lived hours from Bennett’s Ohio home. Bennett passed away in January of 2013.
“Even her doctor mentioned she was great at presenting a strong face,” said Riley, a former resident of suburban Naperville, who now lives in Chattanooga, Tenn. “When asked how she was doing, she’d always be like, ‘Oh, I’m just fine.’”
Mabel Bennett’s unyielding determination in the face of dementia was both a good and bad thing, her daughter Kelle Riley said.
On the one hand, Bennett’s need to appear vibrant and undiminished likely helped her hold on to many of her faculties longer than someone without the same resolve. But it also made knowing her limitations much more difficult, especially for Riley who lived hours from Bennett’s Ohio home. Bennett passed away in January of 2013.
“Even her doctor mentioned she was great at presenting a strong face,” said Riley, a former resident of suburban Naperville, who now lives in Chattanooga, Tenn. “When asked how she was doing, she’d always be like, ‘Oh, I’m just fine.’”
The recently released Alzheimer’s Association 2013 Facts & Figures report explores the challenges faced by long-distance caregivers. Nearly 15 percent of all those caring for someone with Alzheimer’s or another dementia are living a distance of at least 1 hour from the affected person.
“The difficulties of Alzheimer’s and dementia are significant for all caregivers, but individuals who live a substantial distance from their loved ones face unique hardships,” said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association. “Long-distance caregivers have nearly double the out-of-pocket expenses of local caregivers, experience greater challenges assessing the care recipient’s conditions and needs, report more difficulty communicating with health care providers and often have higher levels of psychological distress and family discord in their caregiving experience.”
For Riley, long-distance caregiving meant developing a good rapport with her mother’s primary care physician — “that relationship was critical,” she said — and routine check-ins.
“I started calling every day,” Riley said. “A lot of the time, there was trauma or stress. She might have lost something or hid something and my step-father would call me and say, ‘You need to talk to her. You’re the only one who can calm her down.’”
Riley was a frequent visitor to Bennett’s home and spoke regularly with her two siblings, adding that everyone understood how important it was to present a united front when it came to their mother’s needs and how to address them.
“We worked together,” Riley said. “Our thought was that we’re all the family we’ll have left so we have to stick together.”
She also took advantage of the information found on the Alzheimer’s Association website. The Alzheimer’s Association offers a variety of educational and support resources, including its 24/7, toll-free Helpline, 800.272.3900, care consultation and online resources to assist families with the care management of someone living with Alzheimer’s regardless of geography.
Click here to learn more.