By Kara Jacobsen
January is Support Group Awareness Month at Alzheimer’s San Diego! Caring for someone who is living with memory loss can be complicated, overwhelming, and lonely. Most people who have not experienced a similar role may not understand your situation, and speaking with them may be more of a letdown. That’s why we’re taking this month to highlight one of our most successful programs – our valuable support groups.
These groups help people across San Diego County connect with others who are experiencing comparable situations. Caregivers find they are not alone on this journey while learning from one another. We understand everyone is different, and some people might not be comfortable sharing their personal stories with a group of strangers. While others might thrive on talking through things, some benefit most by listening. There is something for everyone, and never any pressure; we always say, “you can share as much or as little as you feel comfortable!” With that in mind, we wanted to debunk some common myths and misconceptions about support groups.
Myth #1: Attendance matters. I have to attend all the time. We know that everyone’s comfort levels and needs are different. Your attendance might fluctuate based on where you or your person are in the stages of the disease – and that’s okay. There’s absolutely no attendance policy or requirement. The groups exist purely to support you, so we recommend attending when it’s most convenient for you.
Myth #2: I am uncomfortable sharing what I really feel – will what I say be kept in confidence? These groups are 100% confidential. We provide a safe space where everyone can feel secure sharing a full range of emotions and situations, knowing that no one will speak of what is said outside of the meeting. So often when people are sharing something they are uncomfortable with, they will find others smiling and nodding their head to say, “Me, too!”
Myth #3: I have to show my face on camera through Zoom and that makes me uncomfortable. If you prefer dialing in with your phone, or just listening for the first time with your camera off, that is completely fine. If, after the first meeting you are still uncomfortable being on camera or displaying your name, please speak with your group facilitator or call the Support Group Coordinator to discuss your concerns. It can be comforting to see the faces of those you are connecting with, but we also want you to be at ease.
Myth #4: I have to use a computer to attend a meeting. You can attend support group meetings by calling in on your phone! Simply call our office, 858.492.4400, and ask for the information you need to reach the support group you want.
Myth #5: Group participants are expected to always be positive and support others with words of encouragement. We know being a dementia care partner takes a toll, and can cause physical and mental stress. Our groups are NOT meant to be an environment where people are solely there to “support” others. They might be called “support groups,” but the purpose is to create a safe space where people can vent and can talk about situations they are experiencing with person living with memory loss and ask “have you all had this happen?” and “what have you found to be helpful for this symptom?” Brainstorming is also a big part of the support group attendee experience since they are among others who can relate to what they’re going through. We want members to leave a meeting feeling “supported” by the experience, but not expecting them to be emotionally responsible for others. You just being there to listen can be a significant source of support!
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Myth #6: I won’t benefit from or will feel sad by listening to “negative” information or stories. I’m afraid to hear about what lies ahead, especially for the later stages of the disease. It’s not easy information to hear about what’s to come throughout the stages of dementia. But being prepared rather than surprised is so valuable. Knowledge is power and can really help make the experience a more positive one for care partners as well as the person living with dementia. And when you have attended a meeting that leaves you feeling overwhelmed, please call our office, 858.492.4400, to speak with one of our Clinical Care Coaches. They look forward to supporting you on your journey in any way they can.
In the end, support groups are here to help you and the person you’re caring for! Many people who have been hesitant at first end up being so glad they went out of their comfort zone and gave it a try. So often, the number one comment we hear from people is that they wished they had joined sooner.
If you have any questions, other concerns, or would like to learn more about our support groups, please call Support Group Coordinator Ellen Boucher at 858.966.3305 or email her at eboucher@alzsd.org or you can visit alzsd.org/support to get the full Support Group Directory.
