National Family Caregivers Month
Each November, the ALS Network recognizes National Family Caregivers Month, and we pay tribute to the individuals who provide daily care and support to those living with the challenges of ALS.
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.
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 will provide various resources throughout November to empower and help address the daily issues you may experience in your critical work as a caregiver. We honor you and the vital support you provide to those who need it most. Please check out these resources below.
View and download this infographic with helpful tips for people living with ALS and their loved ones, including family caregivers.
Celebrating Our Champions of Care!
The ALS Network invites you to join us for our Champions for Cures and Care celebration on Friday, January 17, 2025, in San Francisco, where we will proudly present Patty Schimbor and Sue Morris with the 2025 Essey Commitment to Care Award.
Both of these extraordinary women, each a former family caregiver with their own ALS story, have played an instrumental role in leading the charge to improve care for those living with ALS and their loved ones. Through this award, the ALS Network will recognize Patty and Sue for their numerous years of expertise, generosity, and exemplary leadership benefiting the ALS community in California, Hawaii, and nationwide.
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.
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.
November ASK ME Educational Webinar
We invite you to watch our November ASK ME educational webinar, "Finding Hope: A Physician’s Perspective on Emotions and Managing ALS," which was presented on Wednesday, November 13 at 5:00 PM PST/3:00 PM HST. We were joined by 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.
Over several years, the ALS Network has collaborated with a group of neurologists and researchers from around the country, including people with ALS and their caregivers, to launch a crucial, ongoing study that seeks to establish medical standards and guidelines for in-home care for ALS.
This article, published by the National Library of Medicine, is an important early step in the process to develop an expert consensus-based ALS home health medical standard guidance document, in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine. The ALS Network continues to participate as an advisory committee member in the study, and we will keep our ALS community posted as this work develops.
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.
