For Caregivers
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 ALS Network 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 that you provide to those who need it most. Please check out these ALS Network resources below.
Facts about Caregiving
Caregivers encounter many difficulties in supporting their loved one with ALS, some of which include the often steep learning curve of 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 2023 article by AARP reports the following about caregiver burnout:
- Half of caregivers (50%) said caregiving increased their level of emotional stress, while more than one-third (37%) said it impacted their physical feelings of stress.
- Female caregivers experience more stress and anxiety than their male counterparts; and younger caregivers (under 35) have more emotional challenges than older caregivers, with higher levels of anxiety.
- A whopping 4-in-10 caregivers (39%) report they rarely or never feel relaxed.
View and download this infographic with helpful tips for people living with ALS and their loved ones, including family caregivers.
Adapting to a loved one's diagnosis of ALS can be especially difficult for children and young adults. One of the hardest things to do is discuss the illness, progression, and emotions with young ones.
ALS Network 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.
In conjunction with Your ALS Guide, the following is a list of up-to-date and informative resources that address many of the common concerns and issues that people living with ALS and their loved ones face. This includes guides focused on Caregiver Self-Care and Frontotemporal Dementia (FTD) and ALS.
Emotional Support
The ALS Network is dedicated to improving the mental health and well-being of our ALS community. We offer many resources and tools to help support your mental health needs, and encourage you to participate in our 1:1 counseling support, a free mindfulness and meditation app, and our connection groups.
Contact us now to register with ALS Network and begin receiving free, personalized services, regardless of insurance or immigration status. Call 1-866-750-2572 or email us at careservices@alsnetwork.org.
ICYMI: Watch “ALS from the Caregiver’s Perspective”
In case you missed it, you can watch 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.
We are grateful to both Mari and Trish, who continue to honor their loved ones by supporting our mission and the ALS community.
Finding Hope: A Physician’s Perspective on Emotions and Managing ALS
Please watch our ASK ME educational webinar, featuring Jeffrey Rosenfeld, MD, PhD, of the Center for Restorative Neurology at Loma Linda University Health.
Quality of Life Grants for Respite Care
ALS Network offers small grants to support respite care for families living with ALS throughout our service area. This provides a much-needed short-term break so that family members and caregivers can regroup and recharge. Please contact careservices@alsnetwork.org for more information on this program.
Starting January 1, 2025, a new law will make it easier for California family caregivers to access paid family leave (PFL). The law removes the requirement for employees to use up to two weeks of their vacation time before receiving PFL benefits, allowing caregivers to take up to 8 weeks of leave without impacting their vacation days.
Caregivers will continue to apply for PFL through the Employment Development Department using the existing process, without any additional steps needed. This change provides greater flexibility and essential support to the invisible frontline of our healthcare system.
Generous benefactors underwrite ALS Network programs and initiatives every year - providing vital and transformative support for caregivers of loved ones with ALS.
One of those steadfast supporters is Sandy Repczynski. As the primary family caregiver for her beloved husband, John, who lived with ALS for over 10 years, Sandy experienced firsthand that having access to a wide range of support is critical when living with ALS. This includes ALS Network care services staff, experts who help family caregivers navigate activities of daily living, disease progression, medical care, community engagement, emergency situations, and end-of-life conversations.
The ALS Network annually serves more than 2,000 people with ALS, plus their loved ones in California and Hawaii.
We celebrate Sandy, who raises funds in support of our programs annually, and the thoughtful individuals and families who have established funds that benefit family caregivers, including the Morris Family Caregiver Initiative, the Ron Malone Care Services Fund, the Betsy Brandt Caregiver Fund, the Chateau Seaview Fund, the Judy Olsen Fund, the Clara Remele Northern California Care Services Fund, the Martha Olson Fernandez Family Foundation Fund, to name a few.
If you are interested in learning more about our programs that support family caregivers, or establishing a named fund, please contact Cherryl Fluke, Executive Vice President, of Mission Advancement.
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.