Caregivers encounter many challenges in supporting their loved one with ALS, some of which include the new experience of understanding how to provide assistance for physical limitations affecting mobility, swallowing, speaking, and breathing. Cognitive issues, including a diagnosis of frontotemporal dementia, present an extra layer of difficulty in providing care. A May 2020 article by AARP writes the following about caregiver burnout:
- Thirty-six percent of family caregivers characterize their situation as highly stressful, according to the "Caregiving in the U.S. 2020" report from AARP and the National Alliance for Caregiving (NAC).
- A 2021 study from insurance firm Genworth found that 51% of all caregivers indicated that the experience negatively affected their personal health and wellbeing.
- Research cited by the American Psychological Association found that among people ages 55 to 75, those who are caregivers show a 23 percent higher level of stress hormones, which can lead to high blood pressure, and a 15 percent lower level of immune response, making them more vulnerable to the flu and other infections.
An ALS diagnosis impacts every aspect of caregivers’ lives as they adjust their efforts to meet ongoing work, family, personal and financial obligations, which change as the disease progresses.
The Golden West Chapter provides various resources to empower and help address the daily issues you may experience in your critical work as a caregiver. We want to honor you and the vital support you provide to those who need it most. Please check out these Chapter resources below.
A Resource for Families Affected By ALS
View and download this infographic with helpful tips for people living with ALS and their loved ones, including family caregivers.
Support for the Family
Coping with a loved one's diagnosis of ALS can be especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones. The Golden West Chapter is here to ensure that no one, big or small, is alone when facing ALS, and to offer many tools and resources for our ALS community.
ALS Caregivers: You're Not Alone
The Golden West Chapter was pleased to collaborate this year with the Family Caregiver Alliance on the creation of a video that is specific to providing information and support for ALS family members and caregivers. Please find the video aquí and know that you are NOT alone in managing the challenges of this disease.
Caring for Caregivers: Our Deepest Gratitude
In recent years, donors with a deep recognition of the significant issues facing family caregivers have stepped up to support Golden West Chapter’s programs and novel initiatives designed to provide vital and transformative support to caregivers living with a loved one diagnosed with ALS. We are so grateful to the Morris Family Caregiver Initiative and Ron Malone Care Services Fund for supporting our essential programs and services for caregivers. These are just two examples of how the generosity of those served by the Chapter has translated into meaningful support for other caregivers throughout our service area. Please consider making a gift today in support of the mission of the Golden West Chapter!
ASK ME: ALS from the Caregiver’s Perspective
In honor of National Family Caregivers Month, see our ASK ME educational webinar, “ALS from the Caregiver’s Perspective” featuring Mari Fuentes, who cared for her husband, filmmaker Anton Maillie, and Trish Rice, who cared for her son, writer and poet Ryan Farnsworth.
To see our library of webinars, please click here.
High Impact Priority Quality of Life Grant
The Chapter offers small grants to support respite care for families living with ALS throughout the Chapter’s service area, which includes 31 counties throughout California and the entire state of Hawaii. This provides a much needed short-term break so that family members and caregivers can replenish and recharge. Please contact your care manager for more information on this program.
Building Better Caregivers
In honor of National Family Caregivers Month, find support from other caregivers managing the challenges of caring for a loved one. Building Better Caregivers (BBC) is a free 6-week online workshop developed by Stanford University to support caregivers of Veterans of all eras. BBC brings together a community of caregivers to learn new ways to manage stress, improve communication and give and receive support in a safe and secure small group environment facilitated by trained leaders. Learn more at their website.
Medicare Coverage for Home Health Aide Care
Medicare coverage can help older adults and people with disabilities obtain necessary home care. When individuals meet the home health benefit criteria, Medicare-covered care can include home health aide services. As defined by federal law, home health aides provide hands-on personal care, including assistance with activities of daily living. This care is often critical to a person's health, safety, and ability to remain at home. Learn more from this fact sheet provided by the Center for Medicare Advocacy.