Obama Administration Recognizes Plight of Family Caregivers
Cheryl H.'s mom is in the moderate stage of Alzheimer's disease and lives with Cheryl and Cheryl's sister. In a recent e-mail to the social work team at the Alzheimer's Foundation of America, Cheryl wrote: "We both work and have a hard time leaving her as she is very much afraid of falling and having no one to call. She is at the point where I don't think she would think to press her life line if she did fall. We are not in a very good financial position so getting help beyond what she has now, which is one aide for 1-1/2 hours a week, is impossible."
You might know someone like Cheryl H. Her story might be similar to your own. Or, your own story might even be more challenging-no help...not even for a mere 1-1/2 hours.
Caregivers are struggling out there-and their pleas for help are reaching unprecedented levels. Among e-mails we received in the past two days, I randomly pulled 10 of them to look at. Besides Cheryl H., I would classify seven more in the "ultra-desperate" category. These caregivers are at wit's end, largely struggling with everyday challenges and the financial burden they bear.
It's for family caregivers like these-and the countless others who are suffering silently-that the recommendations of the White House's Middle Class Task Force, appointed a year ago by President Obama and chaired by Vice President Joseph R. Biden Jr., come as welcome news.
America got the first look at them on Monday when they were made public after President Obama and Vice President Biden held a task force meeting to discuss the policy initiatives. President Obama addressed the plight of the middle class as a key theme in his State of the Union.
The recommendations would, in part, help families balance work and caregiving obligations, including helping them pay for care for elderly relatives. At the same time, middle class families in the "sandwich generation"-struggling to care for both their children and their parents-will also benefit from new initiatives to support elder care for seniors and respite for their caregivers.
To the tune of $102.5 million, the task force's "Caregiver Initiative" addresses the very needs we hear about every day: caregiver support programs, like respite care, counseling and referrals to resources; and other services, like adult day care, transportation and in-home aides to assist with activities of daily living-the types of sharing the care that lift some of responsibilities off the shoulders of American families.
For Alzheimer's disease, 70 percent of people with this brain disorder live at home, where families provide at least 75 percent of their care.
Four years into caring for her husband with Alzheimer's disease, Barbara S. could benefit from this helping hand. Her husband's symptoms have gotten worse lately. He doesn't sleep at night, waking up every two or three minutes for the first two hours. "I am so exhausted every evening," she bemoaned. "I don't know what to do or where to turn."
It's hard for outsiders to "get this." An AFA survey in 2007 of sandwich caregivers-defined as individuals caring for the parents or guardians of children under 21 who also care for an aging parent or relative with Alzheimer's disease-found that about 70 percent of respondents felt people don't recognize how much stress they face.
Thankfully, the Obama-Biden administration has. They have recognized caregivers' plight and mobilized around this issue. The estimated 38 million Americans like Cheryl H. and Barbara S. who provide unpaid care to aging relatives play a pivotal role in the nation's healthcare system. Just think where individuals with Alzheimer's disease would be without them.