After spending much of our lives raising families and working toward personal and professional goals, many of us come to the realization that brakes must be applied in order to assist our aging loved ones.
The anxieties that family caregivers face are overwhelming as they strive to support elders who are living with chronic health issues, experiencing changes in their abilities and trying to avoid long-term care settings. Many caregivers are also members of the sandwich generation—sandwiched between raising children and looking after their aging parents.
Selflessness, fatigue, nervousness, agitation, sadness and resentment often lead to overwhelming caregiver stress and even burnout. So, where can one find some relief? In-person and online caregiver support groups are an excellent source of encouragement, connection and information.
Is a Caregiver Support Group Right for You?
When we think of support groups, usually the addiction groups, such as Alcoholics Anonymous (AA), come to mind. As with any new endeavor, there is a certain degree of apprehension that comes with that first meeting. Upon arriving and being greeted by strangers, many begin wondering if they did the right thing by attending.
However, going beyond talking with a friend or family member can help us find elder care solutions that we wouldn’t have discovered otherwise. When those in similar life-altering situations begin to share their challenges and weaknesses, everyone usually comes away feeling empowered and reassured with renewed strength and creative new ideas to help them carry on.
How to Find a Caregiver Support Group
The search for an area meeting can be accomplished by contacting local hospitals, senior centers or health/human services agencies. Your local Area Agency on Aging (AAA) is an excellent resource for caregivers as well.
If you are caring for someone with a specific health condition like cancer, dementia, Parkinson’s disease or stroke, search online for disease-specific support groups near you. Larger organizations, such as the Alzheimer’s Association, the Parkinson’s Foundation and the American Cancer Society, often have state and local chapters that host support groups for patients and caregivers alike. Some even have 24/7 helplines to connect patients, family members and caregivers with vital support and resources.
Many online caregiver support group lists include a contact point for specific meetings. Be sure to use this contact information to confirm the date, time and place of the meeting beforehand. (Some support groups may require attendees to RSVP.) You can also inquire about the number of people who attend, topics that are addressed and the meeting format to determine if a certain group is the right fit for your needs. Once you’ve found a meeting that works for you and your schedule, go for it!
What to Expect at Your First Caregiver Support Group Meeting
After you’ve found a caregiver support group, the next big hurdle is walking through the door, which can be nerve-racking. Eyes may be upon you when you arrive, but there will also be smiles. Words of encouragement, such as “welcome” or “you’ve come to the right place,” can help you feel like you’ve made the right choice.
Meetings usually begin with a sign-in process that includes issuing name tags and collecting/confirming each group member’s contact information. Information on additional caregiver resources is often available at this time, too.
Once everyone has checked in and been seated, the gathering will be called to order and the meeting format will be explained.
Common caregiver support group guidelines and etiquette include:
- Allowing members to speak uninterrupted
- Possible time restrictions for personal sharing, comments, discussion, etc.
- Rules for discussing formal supports (e.g., behavioral therapy, respite care, physicians, elder care providers, geriatric care managers)
- Rules for discussing informal supports (e.g., online caregiver support groups, social media, faith organizations, family, friends)
It may be announced that no one should state that a certain approach is the definitive right way or wrong way to handle a situation. Support groups are about listening, respecting different perspectives, and engaging in polite and constructive discussion. Therefore, the leader may request that attendees offer one another feedback in the form of suggestions rather than criticisms or guaranteed solutions.
The group leader may then read a daily reflection or prompt followed by each member introducing themselves. Common caregiver support group topics include anger, frustration, respite care, communication, the differences between long-term care options, legal and/or financial planning, grief and caregiver burnout. Support groups for certain health conditions, such as Parkinson’s disease or Alzheimer’s disease, often cover topics specific to these diseases like care planning, medications, therapies, non-pharmaceutical treatments, and how to handle associated behaviors and symptoms.
Listening to other caregivers’ emotions, challenges and triumphs may encourage you to share some of your own. This can be a powerful and cathartic experience, but don’t feel pressured if you’re not yet ready. Be aware that a flow of emotions, especially crying, may occur when you finally do share with the group. It’s all good. Chances are that the leader and regular attendees have heard similar things from other members and/or even experienced them firsthand. Any feedback you receive will be educational and reassuring.
The Benefits of Caregiver Support Groups
One of the most important benefits that family caregivers gain from attending support groups is a sense of comradery. Isolation and loneliness are common among caregivers and contribute to caregiver burnout. According to the Caregiving in the U.S. 2020 report published by AARP and the National Alliance for Caregiving (NAC), one out of five caregivers reports feeling lonely. “Feelings of loneliness are associated with fairly strong feelings of stress and strain as well as decreased health for caregivers,” the report explains.
When a family caregiver is able to interact with others who have experienced many of the same complex emotions and unique challenges, they feel seen, heard and understood. Family members and friends try their best to offer this kind of support, but fellow caregivers and elder care professionals are often the only people who can truly relate and offer actionable advice.
Another key takeaway from these sessions is the importance of self-care. Many family caregivers get lost in their daily tasks and allow their own needs to fall by the wayside. Caregiver support groups can serve as a powerful reminder to make yourself a priority. Attendees can share the ways in which they have sought respite—both formal and informal—in order to rest and recharge. Formal types of respite care might include in-home care and adult day care, while more casual sources of respite might consist of reading a book or taking a relaxing bath while a loved one is napping or watching a TV show.
Caregiver support groups serve as a valuable opportunity to recharge, vent, socialize, learn and experience mutual vulnerability. You will quickly realize that you are not alone even if you merely listen to others and do not speak. There is no requirement to talk, but I have found that when attendees reach a certain level of comfort, they do.
Almost always, the outcome from witnessing and participating in caregiver support groups brings about understanding, connections, gratitude, solutions, RELIEF and a desire to return.