ALS Association¶
The ALS Association is a national ALS organization. If you are not sure where to start, its local Care Services team can connect you to support options. Call 1-800-782-4747.1
Its caregiver roadmap says many resources are available to support caregivers throughout the ALS journey.1 It also says the care team of the person with ALS is there to support you too.1
ALS caregiving can be very demanding. Caregivers can devote more than 100 hours per week, and can have no training and few resources for navigating insurance, care plans, or durable medical equipment.2
The roadmap says taking care of yourself is not selfish and helps you keep caring.1 It advises telling your primary care physician about your caregiving role, and notes that anticipatory grief is common.1