November is National Family Caregivers Month
Each November, ALS Golden West recognizes National Family Caregivers Month, and we pay tribute to the individuals who provide daily assistance 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 2021 article by AARP reports the following about caregiver burnout:
- More than half of caregivers (59.8%) experience high caregiving strain, as measured by the Zarit Burden Interview Screening. About a third of caregivers (36.7%) are somewhat or very dissatisfied with the amount of support received from family and friends.” (Source: The CCRC Evaluation 2022 Annual Report).
- Most (55%) of caregivers reported at least one medical condition; of these, the most prevalent were sleep disturbances (32.7%), depression (31.6%), and chronic pain (22.9%).
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.
ALS Golden West provides various resources 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.
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.
Hope Loves Company
ALS Golden West is a long-time supporter and community partner with Hope Loves Company, is an organization that hosts camps and other resources for children, teens, and young adults whose family has been affected by ALS. Their programs focus on fun activities, while also incorporating opportunities to engage in group and peer-to-peer counseling, and teach young people tools they can use as they help support their loved one. For more information, please visit their website!
Support for the Family
Adapting to 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. ALS Golden West 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
ALS Golden West was pleased to collaborate with the Family Caregiver Alliance in 2022 on the creation of a video that is specific to providing information and support for ALS family members and caregivers. Please find the video here and know that you are NOT alone in managing the challenges of this disease.
ICYMI: Watch “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
ALS Golden West 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 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.
Establishing Clinical Practice Parameters and Standards for Home Care in ALS
Over the course of the last few years, ALS Golden West has collaborated with a group of neurologists and researchers from around the country, including people with ALS and their caregivers, to launch an ongoing study that seeks to establish medical standards and guidelines for in-home care for ALS. Most people with ALS live at home with support of family caregivers who are responsible for adapting to escalating complexity of care over the trajectory of the disease, these family caregivers require resources and support to mitigate negative physical, social, and emotional outcomes. Currently, medical standards for prescribing in-home care for those with ALS do not exist, which means that most often, this desperately needed skilled home care is not covered by health care plans.
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. ALS Golden West continues to participate as an advisory committee member in the study, and we will keep our ALS community posted as this work develops.
Raising Awareness About the Importance of Caregiving
In recent years, donors with a deep recognition of the significant issues facing family caregivers have committed to championing ALS Golden West’s programs and novel initiatives designed to provide vital and transformative support to caregivers living with a loved one diagnosed with ALS. We are extremely grateful to these contributors.
One example is Ady Barkan, the founder and Co-Executive Director of the Be A Hero Fund, who lived with ALS for nearly seven years until losing his battle to the disease on Nov. 1. A true hero and powerful activist, Ady made an enduring impact on the ALS community and used his platform to advocate for universal healthcare – raising awareness and dollars for healthcare reform to ensure access and dignity for all.
Just recently, he leveraged his incredible reach to amplify the stories of caregivers who dedicate their lives to people with ALS, through this video, “The Importance of Caregiving with Izamar Barrios.” Through these efforts, Ady and the Be A Hero Fund raised awareness and funds for ALS Golden West to provide critical ALS caregiver support in the Santa Barbara and Central Coast region.
Ady's life and legacy cannot be overstated; his leadership and commitment to access to care will continue to inspire our work every day. Our hearts are with Ady's family, friends and Be a Hero community as we mourn his loss together and continue working towards collective change.
If you are interested in learning more about our programs that support family caregivers or establishing a named tribute fund, please contact Ashley Petsch, Director of Development.
Caring for Caregivers: Our Deepest Gratitude for Heartfelt Support
ALS is not a disease that can be easily or effectively navigated alone, and oftentimes family members of all ages become the on-call, 24/7, in-home experts on caring for a loved one diagnosed with ALS. A steep learning curve can accompany this critical role and the demands on family caregivers can be intense. Every family caregiver is a Golden West client, and we encourage you to take part in our connection groups, respite grants, family camp experiences, and educational webinars and more.
In recent years, donors with a deep recognition of the significant issues facing family caregivers have committed meaningful support for ALS Golden West’s programs that benefit family caregivers.
We are extremely grateful to the Malone and Morris families, who were inspired to create the Ron Malone Care Services Fund and Morris Family Caregiver Initiative. Their generosity has contributed vital and transformative support to ensure that we can provide access to essential services and novel approaches to addressing the needs of family caregivers.
These two examples highlight how families served by ALS Golden West have chosen to make a meaningful difference in the lives of family caregivers. If you are interested in learning more about our programs that support family caregivers or establishing a named tribute fund, please contact Ashley Petsch, Director of Development.
Thank you for your support of our mission priorities. Donors make everything we do possible. Please consider donating in support of these essential Golden West programs today.