It’s not easy to care for someone else’s needs. Informal caregiving comes with a lot of positive aspects—such as spending quality time with your loved one—and for many, it is a rewarding experience. You are meaningfully contributing to a loved one’s life and independence. But despite these rewards, caregiving often feels like a thankless job. According to research conducted by the Australian Journal of Psychology, the role also increases feelings of “burden, depression, identity loss, and role captivity.” These and other findings make even more clear how important it is for family caregivers to find community in caregiving. In this article, we will explore the benefits of a community and offer places for caregivers to find one.
The Benefits of Community for Caregivers
As a caregiver, you have a lot on your plate. You may be responsible for managing disruptive behaviors, taking care of daily upkeep tasks like dressing, bathing, and grooming, coordinating and/or paying for bills, learning the ins and outs of your loved one’s condition, battling insurance companies, and more. That’s a lot to handle. Having a community can be invaluable for informal family caregivers. Let’s look at a few reasons why:
Keep Loneliness at Bay
One of the first major benefits of a community is its ability to keep you grounded. Too many caregivers are isolated by the stress of their care responsibilities and may start to feel lonely, stressed, anxious, burnt out, or depressed. A community can help you stay grounded in the reality that no matter how it feels, you are not alone.
In fact, there are tens of millions of caregivers in the United States alone. That means there are millions of people out there who understand exactly what you’re going through. By finding a group of fellow caregivers who can lend an empathetic ear, you can keep loneliness at bay.
Another major benefit of a community for caregivers is the ability to pool together your experiences. By comparing your experience with someone else in your shoes, you can find out if there are, for example, resources you are not utilizing, experimental treatments you haven’t heard of, experts you can learn from, and more.
Similarly, your information and experiences are invaluable to a newer caregiver who may be stepping into a role like yours now. Communities are a great place to share and gather knowledge and experience for caregivers of all tenure.
Get Your Mind Off Care
Sometimes you need a break. If all you do is think about care 24 hours a day, you will undoubtedly burn out fast. Finding a community to lean on or to engage in other activities can help you get your mind off of care and the stressors that come with it.
Remember: The need for a break is not a sign of weakness, it is a sign of being human.
Places for Caregivers to Find Community
Through the power of the Internet, finding a community has become easier than ever. Whether you want to find an online community that meets virtually or a physical community that meets locally, using the Internet can help you find them. Here are some places to look:
If you’re looking to connect with other caregivers virtually, there are some active forums, chat groups, etc. that are waiting for you.
- Agingcare.com – A general caregiver forum.
- The Caregiver Space Community Facebook Group – A group for family and informal caregivers nationwide.
- Smart Patients – An online community to discuss various illnesses, treatments, diagnoses, challenges, experiences, and more so that everyone can benefit from the collective knowledge of the group.
- The Care Givers to Elderly Parents Facebook Group – A group for family and informal caregivers to elderly parents.
- NAFC Message Boards – A message board for bowel or bladder conditions
- Alz.org – An Alzheimer’s specific resource that offers online communities, local resources, support groups, and more for those caring for a loved one with Alzheimer’s disease.
- 4th Angel Mentoring Program – A free one-on-one (and confidential) telephone support resource for those caring for a loved one with cancer.
- Inspire – Offers those with cancer and their caregivers several online communities to find inspiration, ask questions, and more.
- CancerCare – Offers around 100 groups led by oncology social workers where cancer patients and their families can find a community.
- Disease-specific patient advocacy organizations like those centered around diabetes, Alzheimer’s disease, other types of dementia, specific cancers, osteoporosis, heart disease, respiratory diseases, injury groups, etc. often offer specialized community resources and forums that could be of value to you or your loved one.
To find an in-person community or support group, here are some ideas for places to look:
- Check with your loved one’s doctor or care team for recommendations.
- Ask a local hospital for a directory of information.
- Check with caregiver resource centers like your local California Caregiver Resource Center for information and referrals to local resources.
- Ask around. Your friends, family, coworkers, etc. may have excellent recommendations they can offer from experience.
Being a family caregiver is both a rewarding and incredibly challenging journey. There is no need to do it all alone. Find a community to reduce the stress, learning curve, and challenges that come with providing informal care to a loved one.
The California Caregiver Resource Centers are a network of eleven independent 501(c)3 not-for-profit organizations across California that were created to be a free resource for caregivers in the state of California. We would love to connect the family caregiver in your life with their local Center, where they can talk more about local programs for caregivers, answer questions, and explain how they can best support the caregiver in your life.Share this post: