Help for ALS Caregivers
Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the person with ALS often causes the caregiver to overlook her/his own needs such as eating properly, getting enough rest, or taking time to pursue one’s own interests.
Primarily, caregiving is provided by family members. Family caregivers provide care day and night, over weekends and on demand. Caregiving can include personal care, assistance with mobility in the home, transportation, housework, and grocery shopping, along with looking after other family members’ needs. Caregivers are often employed outside the home and may be the primary source of household income which adds even more demands, responsibilities and stress. The family caregiver spouse, partner, adult child, parent, brother, sister — needs acknowledgement and support in the process of starting and maintaining the care-providing relationship.
- Nearly 53 million people in the United States provide care to a chronically ill, disabled, or aging family member or friend during any given year.
- Caregivers spend an average of 24 hours per week providing care for their loved one.
- 61% of all caregivers in the United States are female, and the average age of a caregiver is 49.
- 51% of caregivers feel their role has given them a sense of purpose or meaning.
- One in 5 caregivers report high financial strain as a result of caregiving (18 percent). Four in 10 have experienced at least one financial impact as a result of their caregiving (45 percent).
All data, unless otherwise cited, is from the National Alliance for Caregiving and AARP’s 2020 Caregiving in the US Survey.
For additional information and resources, visit caregiveraction.org.
About Care Connections
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.
The program provides a plan for organizing help, training and information about what approaches tend to be most effective. The Care Connection uses a website –lotsahelpinghands.com – that allows volunteers to sign in and see the community calendar where tasks have been posted by a volunteer coordinator. It’s easy to see what people have already volunteered to do and what still needs volunteers. The website shows activities based on type of need (meals, rides, babysitting, grocery shopping) and calendar days, and it’s simple to use.