Did you know that November is National Family Caregivers Month? Celebrated annually, this month is designed to recognize the contributions of caregivers and honor their actions. In a recent White House proclamation, President Joe Biden shared: 

Family caregivers are the backbone of our Nation’s long-term care system, doing essential work with devotion, often at great emotional and financial cost. It is time to bring their service out of the shadows and celebrate and support them.

Currently, there are over 50 million people in the United States who are acting as family caregivers in some capacity. We see this often within the rare disease and chronic illness community. Parents may need to take leave from their jobs to take care of their children. Children may need to take care of an elderly family member or a parent. And of course, caregivers span the entire family spectrum: aunts and uncles, grandparents, cousins, partners, spouses, nieces and nephews, or even friends (that become family!) become part of the caregiving efforts.

Becoming a caregiver can be mentally, physically, and emotionally challenging. At Patient Worthy, we want you to know that you are not alone. You are seen and your efforts are appreciated.

What is Family Caregiving?

The Family Caregiver Alliance explains: 

[Millions of] Americans provide 37 billion hours of unpaid, ‘informal’ care each year for adult family members and friends with chronic illnesses or conditions that prevent them from handling daily activities such as bathing, managing medications or preparing meals on their own. Family caregivers, particularly women, provide over 75% of caregiving support in the United States.

Further, the FCA shares tips on starting points for new caregivers. They explain that new caregivers should first:

• Learn about their family member’s diagnosis. 
• Hold discussions on finances and healthcare wishes.
• Take advantage of community programs and resources.
• Look for support through patient organizations or social media. 

The National Organization for Rare Disorders (NORD) offers comprehensive resources for caregivers, including educational videos, advocacy and insurance assistance, fact sheets, webinars, and more. 

National Family Caregivers Month

For National Family Caregivers Month, we want to honor the caregivers within the rare disease and chronic illness community. A 2018 study from the National Alliance for Caregiving found that:

• 62% of rare caregivers are caring for someone under 18 years old.
• 71% of rare caregivers are caring for someone whose condition is genetic in nature.
• Many caregivers feel frustrated about the lack of rare disease awareness and education within the healthcare system. 38% of caregivers feel that they cannot depend on their local hospital to handle the rare disease or condition.
• Rare caregivers spend about 37 hours weekly (on average) performing caregiving duties. This is increased to 52 hours for caregivers of a child. 
• Many caregivers feel that managing a rare disease has negatively affected their financial situation.

So how can you help honor the caregivers in your life during National Family Caregivers Month (or honor yourself)? One way is to share your story on social media. Tweet, make a post about, or share photos of you and who you care for, or of you and your caregiver. If the latter, explain what about your caregiver makes them so special. 

You can also email [email protected] with your story if you’d like to share it on Patient Worthy or have it highlighted on our Twitter page!