November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.
According to the National Alliance for Caregiving (NAC), 53 million Americans serve as caregivers, an increase 43.5 million in 2015. In 2020, 19.2 percent of adults in America serve as a caregiver for a family member or friend who is an adult. Most adult caregivers provide care for a family member – a spouse or adult parent. Caregivers also report difficulties navigating the health care system and say that it is difficult to manage their own health, with 21% reporting their own health is fair to poor.
According to the NAC, their report, Caregiving in the U.S., “was fielded in 2019, before the current COVID-19 pandemic. While some of the data reported in the study may have changed, the crisis has likely heightened some of the challenges that caregivers face in their journeys, which include experiences such as feeling alone, financial, and emotional strain, and balancing work while providing care.” Now, more than ever, it’s important to recognize these additional stresses and find strategies to practice self-care.
While caregivers agree their work is stressful, many also say their role gives them a sense of purpose and meaning in their life. But this year caregivers are dealing with the added challenges brought on by the coronavirus. For people living with ALS, an at-risk community for COVID-19, the need for caregiver support must be balanced against exposure to the virus. The ALS Association has worked to continue their support as chapters have expanded support groups virtually enabling participants to remain safely in their homes. Many have even turned to technology to deliver additional platforms for education and instruction to help provide families with the information they desperately need.
If you are a caregiver, thank you for all you do and the critical role you play for your loved ones and the ALS community. Know you are not alone. And if you know someone who is a caregiver, download this infographic about caregiving and share on your social platforms to show support for them and the tremendous work they do.
Three families shared their experiences dealing with increased isolation and managing ALS during a pandemic on our recent podcast episode of “Connecting ALS.”
For more information and resources for caregivers, visit our website HERE.