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Online Caregiver Communities

There are many ways in which family caregivers can get support to care for themselves when they are providing elder care: respite care from another family member or a professional caregiver, talking with a group of fellow caregivers, and getting plenty of “me” time with rest and preferred activities.

For those with very limited time and resources, there are also online communities which they can engage with to ask questions and just feel heard when they need to vent about frustrations or woes.

Agingcare.com has a Caregiver Forum where people can see what type of issues other caregivers are facing and even reply. For example, a recent query stated, “I am ready to cut ties with my two brothers who live close to my parents. I live out of state but am in charge of their health. Need advice.” Another one with 22 answers and counting stated, “How can I get my sister to stick to our agreement to jointly care for Mom?” The replies included a few that read, “It’s time to make other arrangements for Mom.” And “Not everyone is cut out to be a caregiver.”

The Caregiver Space has created private Facebook groups for all kinds of family caregivers including spousal care, young caregivers, eldercare, and more. “These private Facebook groups are a safe space for support and encouragement—or getting it off your chest,” they explain on the website. You will be asked to join a group in which only other members can see your posts.

The Alzheimer’s Association has both in person and online support for those caring for someone living with this disease. ALZConnected is a free online message board where people can ask advice and find support. Recent posts include these topics, “I’m wondering if anyone knows of a situation where an elderly parent is caring for an adult child with Alzheimer’s, and how their experience differs from many of us in the opposite situation?” Other posts tackle questions about early-onset Alzheimer’s disease, moving a loved one after a diagnosis and more.

The American Parkinson Disease Association has an online community support forum in association with Smart Patients. “This network is designed for people with PD, care partners, and family members,” Robin Kornhaber, APDA Vice President of Programs and Patient Services is quoted as saying on the website. “This innovative opportunity will further a dialogue to nurture the PD community, provide socialization, education, and critical access to information.”

The Caregiver Action Network has a free “Caregiver Help Desk” with experts to chat with online, email, or by phone during specific hours. In addition, their Care Community is a place to post a question anonymously to their online forums. Recent topics have been, “I’m a new caregiver…what do I do?” and “Dealing with caregiver depression.”

If you know of an online caregiver support group, please share the recommendation in one of our social media posts.

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