Being a caregiver for a loved one can be stressful and frustrating. You might even be angry at times. You are not alone. The right support group can be a great place of comfort where you can talk to people who have been through similar situations and faced the challenges you’re facing. In a group, you can talk about how you’re feeling with people who understand. A good support group can be a network of friends to whom you can turn to when you have questions or need help—and in turn, you can be there for them as well.
But what makes a good support group and where can you find one? Here are some things to think about when looking for a group.
What makes a support group successful? A support group is successful if it provides:
- A safe place for sharing true feelings
- A place to make new friends
- Information about resources and coping mechanisms
- Advice on what lies ahead
- Help in dealing with family members
Why are support groups so important? Support groups should have:
- A caring atmosphere with trust between group members
- A clear structure and purpose
- Agreement on group rules, including confidentiality
- A good facilitator
Where can I find a caregiver support group near me? Good places to find a support group near you are:
- The social work department of hospitals
- Adult daycare centers
- Voluntary organizations that deal with your care recipient’s condition, i.e., TBI, Alzheimer’s disease, MS
- Area Agencies on Aging
- Your faith community
Questions to ask:
- Who sponsors/runs the group?
- Who is the facilitator?
- What is its organizing principle?
- What is the makeup of the group?
Types of Support Groups
It is important to understand the different types of groups so that you can choose the one that is best for you.
Condition-Specific. These groups focus on a particular disease, disability, or condition—like cancer, Alzheimer’s, heart disease, MS, etc. The advantage of these groups is that they provide excellent up-to-date information on the condition and available resources. To find a group specifically for your loved one’s disease or condition, visit the website of trusted organizations devoted to that disease. You can find a list of disease specific organizations here.
Groups for a Specific Type of Caregiver. Some groups are relationship-oriented. If you want to speak to others who are caring for a spouse, a parent, or a child regardless of their condition, these groups would be good for you. There are groups specifically for young people—who are sometimes overlooked when you think of caregivers. There are support groups for people caring for loved ones who are or were in the military. Some groups are for adult children caring for an aging parent.
Online. Online options offer the advantage of connecting with others from home. These groups are especially good for those who cannot take time away from home, are caring for people with rare conditions, or for caregivers who are unable to attend a face-to-face meeting—or who prefer not to. Online groups can also be good for when you need to talk to someone outside of normal operating hours.
Peer- vs. Facilitator-Led. There are support groups that are led by volunteers who have been through some of the same struggles as those who attend the group. You may feel as though they will be better able to understand what you’re going through since they’ve been through it themselves. Other groups are led by trained facilitators—often social workers or members of the clergy. For some people, attending a more focused group is more helpful.
Regardless of the type of support group you choose, the important thing is that you find a place where you feel safe and can share your stories and feelings without feeling judged. Hearing about the experiences of people who have been through some of the same things as you and getting advice to make your caregiving experience easier can make all the difference. You are not alone.
CAN hosts several support groups and forums—some devoted to specific diseases and some to particular aspects of caregiving:
Alzheimer’s Disease: Some of the topics covered are caregiver depression, how to deal with a new diagnosis, and coping with disease progression.
Huntington’s Disease: Topics covered in the forum include the early symptoms of Huntington’s and the debate about genetic testing.
Parkinson’s Disease: In this forum, participants have discussed feeling as though they’re not doing a good job as caregiver and getting outside help.
COPD: Participants in this forum have posted about coping with a loved one’s end-stage disease and a loved one who continues to smoke after her diagnosis.
Loved Ones with Mental Health Issues: Mental illness affects the whole family and caregivers commonly face feelings such as helplessness, guilt, and anger.
Dealing with Medical Professionals: Discussion in this forum has covered issues such as communicating with multiple doctors, HIPAA regulations, and disputing medical bills.
New Caregivers: This is a group to help new caregivers get started. Topics covered include exhaustion, dealing with family conflict, and how to address a loved one’s loss of appetite.
Life After Caregiving: Caregivers give so much of themselves in caring for their loved one, but often don’t plan for how their life will look afterward. The discussion here has covered dealing with financial matters, grief, and restarting your life.
Dealing with Caregiver Depression: Family caregivers experience depression and anxiety at a much higher rate than non-caregivers. Talking to others can give you help in finding ways to deal with the stress of caregiving.
Working Through Your Frustration and Isolation: Frustration and isolation are often considered two of the biggest personal issues for family caregivers to deal with. Learn how others have gotten through these feelings.
Technical and Practical Advice for Caregivers: Discuss practical tips on topics such as helpful equipment, staying connected with your loved one, and how to help with activities of daily living.
If you need additional help in finding a support group, please contact CAN's Help Desk.