The ALS Association

ALS Ice Bucket Challenge Progress

National Family Caregivers Month

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November is National Family Caregivers Month, which means The ALS Association wants to join in thanking the legions of people—65 million Americans—who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age, according to the Caregiver Action Network (CAN). Not only do we want to say a heartfelt, “Thank you!” to our invaluable caregivers, but also we also want to remind you that you’re not alone. Even the most competent and energetic among us needs kindness and support of their own, particularly on those days or in those moments tied to questions about how to deal effectively with suddenly occurring, or slowly evolving, illnesses that change life as we know it.

Among CAN’s well-stocked shelves of caregiver offerings, the Washington, D.C.-based organization makes free membership available through the Caregiver Community Action Network, a resource that links caregivers to education and advocacy support by way of a highly capable group of more than 100 volunteers in 40 states. From the Doctor’s Office Visit Checklist to a webinar about Communicating Effectively with Healthcare Professionals, CAN offers a stockpile of information designed to raise awareness and provides many tools.

Among these tools is an entire category of “How Tos” for caregivers dealing with rare diseases and their particular obstacles. These difficulties may require caregivers to raise awareness among healthcare professionals of ALS’s specifics, and what the person coping with the illness explicitly faces.

Words of wisdom from CAN also come in the form of ten quick tips for caregivers. Tips include reminders that self-care, taking breaks, connecting with others in a similar life situation—is as significant as the nurturing and watchful care being provided. The information also raises awareness of the range of feelings that may surface in the course of caretaking.

As a complement to what CAN provides, a 2009 research report conducted for the National Alliance for Caregiving in collaboration with AARP titled, “Caregiving in the U.S.,” offers these key findings:

  • Twenty-nine percent of the U.S. adult population, or 65.7 million people, are caregivers,
    including 31 percent of all households.

  • Family caregivers provide an average of 20 hours of care per week.

  • American caregivers are predominantly female (66 percent) and are an
    average of 48 years old.

  • Most care for a relative (86 percent), most often a parent (36 percent).

  • Seven in ten caregivers care for someone over age 50.

  • One in seven caregivers provides care, over and above regular parenting,
    to a child with special needs (14 percent).

  • Caregiving lasts an average of 4.6 years.

To read more, the “Executive Summary of “Caregiving in the U.S.” provides 34 pages of additional information for caregivers and their networks of support.

While the specifics of each caregiving scenario vary, often people filling the role of caregiver are called upon to deal with the financial, legal, and emotional needs of people who can no longer live independently. Coping and thriving in parallel with such complex demands means reaching out for assistance and information. Likewise, it means taking account your own well-being, engaging in activities that replenish energy and reaffirming what’s meaningful. From all of us at The ALS Association, we are grateful to for the time and effort our caregivers provide to the people living with ALS every day.

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