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ALS Registry

The ALS Association Care Connection

You don’t have to be alone on this journey.

Care

It’s easy for people with ALS and their families to become overwhelmed by the wide range of needs they have, from everyday errands to making meals, maintaining their home, getting children to and from school, and so much more. It’s hard to know when and how to ask friends and neighbors for help, and how to organize their availability. And for those who want to offer a helping hand, it’s difficult to know just what is needed and how you can make a difference.

The Care Connection program is simple: it’s a network of volunteers from the community – friends, neighbors, members of community organizations like your church, or other service groups – that provide help for the person with ALS and his or her family, and often give the caregiver a break from their day-to-day responsibilities.

Within these pages are tools and information that will help you to organize a Care Connection for your person with ALS and their family. You may also call your local ALS Association Chapter for support. While the Chapter does not organize and run the Care Connection, your Chapter Care services staff is available to answer ongoing questions and to help with problem-solving. Helping the family to utilize the Chapter’s resources as well as community resources will be an important task for the Care Connection.

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Why is there a need for a Care Connection?

ALS affects the entire family. Many persons with ALS face disruption during the “prime of life” which impacts their careers, child-rearing, and social and professional activities. The caregiver of someone with ALS is often a spouse, or other family caregiver. Family caregivers take on this role in addition to existing responsibilities with work and family. As demands on the caregiver increase, daily life may become unmanageable, creating increased stress on the entire family.

Family caregivers are vulnerable to burn-out, fatigue, and stress-related health issues. It’s not uncommon for daily tasks, such as meals, laundry, and chil-dren’s activities to be less of a priority when providing care for a loved one with ALS. Caregivers may feel “defeated” by the growing list of tasks that they are no longer able to manage. The Care Connection provides support to the entire family by organizing volunteers to take care of some tasks that are “falling through the cracks”.

The Care Connection can significantly reduce stressors on the caregiver and the entire family by providing compassionate support. A Care Connection Coordinator is selected by the family to effectively manage a team of volunteer participants to provide help as identified by the family in need. The pro-gram is sensitive to the fact that it is often easier to “give” care than it is to “receive” care. The step-by-step guide makes running a Care Connection easy. Chapter Care Services staff are available to answer any questions.

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