Caregiver support groups: are they right for you?

Bonnie Sandler, S.W., The Senior Times – May 2007

Most often, when I suggest a support group to a client they quickly respond negatively. They hesitate with replies such as “I am not a support group person” or “I’ve always been fairly private about my personal life” or “I’m shy” or “I’m not interested in sitting around with a group and listening to their problems. I have enough of my own.”

AD/RD (Alzheimer’s Disease and Related Disorders) lasts for many years, during which time an individual’s behaviors and abilities will change as the disease progresses. It is imperative that you, as the primary caregiver, undertake to educate yourself about AD/RD. Without knowledge and training you will not be able to caregive your loved one in the best way possible no matter how sincere your intentions. You will also burn out quickly.

Each person with this disease will live their journey in a unique way. The 36-Hour Day by Nancy L. Mace and Peter V. Rabins is the book to read if your loved one has the disease. But, since books cover the disease from early diagnosis to late stages, many find the information overwhelming and may not be ready to read about stages that are not significant at a given time.

A support group facilitated by a well-informed and caring professional will not only provide you with education about the disease but allow you to address your personal situation.

Typically, groups include 8-10 participants. Spousal groups can include men and women. There is usually an initial commitment of 6-8 weeks, allowing time for new participants to understand what a support group is all about and what it can mean to you as a caregiver. Different types of groups exist: spousal groups, where the primary caregiver is a spouse living at home with the person; adult children groups, whose issues and losses differ from those of spouses; groups for caregivers, whose loved ones are no longer living at home; and bereavement groups.

A group gives participants the opportunity to discuss situations that are difficult to discuss with family and friends. Caregivers are reluctant to disclose events with those unfamiliar with AD/RD. They may be embarrassed to discuss certain behaviors. This is a long journey and they often feel they are burdening their family and friends. They may be uncomfortable sharing their feelings of sadness, anger, frustration and loneliness.

A support group allows its members to see that they are not alone and that others are struggling with similar situations. Caregivers in these groups don’t feel that they have to censor their stories. Where else can you discuss the fact that your spouse mistook the waste paper basket in the bathroom for the toilet or couldn’t find the kitchen in the home he has been living in for 40 years?
A support group is a safe non-judgmental place to feel heard and understood. Caregivers will see other participants nodding their heads, wiping their tears, and sharing their laughter. It is a great release from the frustration and anxiety that is part of the experience of dealing with their loved ones on a daily basis. Finally someone is listening to and validating your story.

The educational component changes as the needs of the group change. Knowledge is power. Participants learn from one another, not just the facilitator. They hear what has worked for others in dealing with certain challenging behaviors.

The right support group can be a lifeline. Members also develop an attachment to other group members. Each group forms its own personality. One group that I facilitate has been together for years. They support each other outside weekly sessions. They genuinely care about each other and socialize. They laugh and cry together. It is heartwarming when I hear how one member helped another during the week by driving a spouse to a day centre, staying with a spouse when the paid caregiver is not available. A caring phone call can often be the best support when a caregiver is having a particularly rough time.

Support groups are also a way to network, find out about resources in the community, paid caregivers, day centers, useful products, and activities. Support groups are offered in agencies specializing in this disease or through private professionals. Local CLSCs (CSSS) offer caregiver support groups but not necessarily devoted to AD/RD. So take the first step and call to inquire and explore groups in your area.