Resource Review: Caregiver Chat Forums

It is so common these days for us to turn to the internet when we have questions about something, and it’s becoming increasingly common to get support from online communities when we need it as well. Chances are, you’ve been invited in to at least one Facebook discussion group about anything from dogs to knitting. Connecting with people online who share interests or life challenges can be comforting, and for some it can feel like a lifeline.

Why You’d Access a Caregiver Chat Forum

When you are in the throes of your caregiving role, having someone to reach out to when you need to talk is crucial. Being able to unload your frustrations or sadness can help you work through what you’re going through, so you can take better care of yourself and be more present with your loved one. Finding the people to speak to, however, can be challenging. You might feel that it’s hard to speak with people in your life about caregiving who aren’t caregivers themselves, or perhaps you’re worried about talking to someone too much about what you’re going through. Time is also an obstacle. It can be easier to speak with someone quickly online when you need to vent or get some advice that it can be to get to a support group or call someone on the phone. Connecting with other caregivers in online chat forums can be a wonderful way to hear other people’s stories and perspectives, and also to unload what you’re going through and get comfort or advice. 

The Benefits

Online forums allow you to participate at your comfort level. You can simply browse the topics and read the suggestions, or you can post replies or a comment for feedback. Some forums allow you to be anonymous. You can connect with other caregivers who have no idea who you are, which might prevent bias from other participants. Forums that are not anonymous, such as any you’d find on Facebook, could help you to create deeper connections with other caregivers, which could lead to in-person meet-ups if it’s something you’re open to. 

The Risks

There are a few things to consider if you’re interested in participating in online chat forums. The first is that anything you write can live forever on the internet. Even if you are in a private group on Facebook and delete your posts, screen shots can be taken and shared with whoever the user wants to share them with. This is not meant to scare people away from using online chat forums, but it is a reminder to be mindful about what you post – whether it’s personal information about yourself and your family, or comments on another person’s posts. The second thing to think about, is that because of the anonymity (or assumed anonymity) of these groups, people will sometimes write things that may not be the most supportive or helpful, and could even be hurtful. People are also sharing their opinions and experiences, so keep in mind that while their experiences may have been true for them, the same experiences might effect you or your loved one in very different ways. For example, let’s say you ask a forum about how their loved one was effected by a certain medication. Someone might respond by saying, “It was awful! They were so sick and didn’t act like themselves. No one should ever be put on this medication.” Perhaps that post doesn’t get any other comments, so that is the only perspective you’re left with. You might now feel terrified about the medication your care partner has been prescribed, when before you only felt curious. What you don’t know, however, is how many other people have responded to the medication, or what else was going on for this particular person’s spouse when they started taking the medication. 

Chat Forum Suggestions

Facebook: Search for “Caregiver Support Group” in the search bar and you will get a number of group suggestions. You can request to be added, and see if the group’s a good fit for you. If at any time you don’t feel comfortable or feel the group is too large/small, you can simply leave the group and look for another. Note: You must be a Facebook user to use Facebook groups. 

Aging Care Caregiving Forum: This forum allows you to post questions anonymously. Other users can post replies. 

Caregiver Action Network: You must sign up for an account, but you can post anonymously to other caregivers. 

The Caregiver Space: Read articles from other caregivers, or join their Facebook conversation group. 

Do you participate in any caregiver online forums? What has the experience been like for you? We’d love to hear from you in our comments! 

Cassandra Van Dyck