Developing a support group takes planning and commitment from the organizers. The first step we took to create our group was to contact the Alzheimer’s Association for information on the disease and on how to start a group. The association was very encouraging and supportive of our efforts. They continued to nurture us until we were able to become a full chapter of the Alzheimer’s Association. Since the beginning of our support group, the network of the Alzheimer’s Association has grown tremendously and now stretches across the country. They offer a wealth of information, training, and resources to anyone wishing to start a support group.I’ll never forget the first meeting of our support group. To my surprise there were twenty-six caregivers in attendance. Needless to say, we were very glad to meet each other. For some, it was the first time to talk to other caregivers, people who could really understand how it felt to see a loved one slowly slip away. For the first time, we knew we were not alone in our feelings. Our emotions of grief, anger, frustration, depression, and guilt were shared by others. We cried with each other and laughed at situations that could not be told even to friends, because they would not understand. From that day on, we knew we had brothers and sisters, of all ages and circumstances, who were together in their support of one another against an invisible but very real foe. In a very dark and lonely night, each of us became a small light for the other.
In the beginning I had a very narrow concept of just what our group would do. I had a vision of ten or fifteen people sitting in a circle and discussing problems. Occasionally we would have a speaker. Imagine my surprise when our group grew so fast that my husband’s computer had trouble keeping up with it. Everyone was hungry for information. I soon found that support groups do a lot more than sit around and discuss problems, although that remains an important part of each meeting. A good support group has many roles to play; each one is very important in our battle against Alzheimer’s disease.
Emotional Support
The first and most important role is that of giving emotional support to caregivers. The support group provides a safe and supportive community through which caregivers can share their thoughts and concerns. It is precisely this role of helping the patient by helping the caregiver that the support group can do best; and by helping each other, we help ourselves. Knowing others who have faced similar circumstances with courage and grace is also a source of encouragement to individuals who are afraid of what inevitably lies ahead. They discover new belief in their own ability to follow through on this difficult task.
It is hard to describe the transformation I have witnessed in caregivers who come to a support meeting discouraged and depressed and leave uplifted and strengthened. I have come to believe that you cannot be in the presence of courageous people without some of their courage becoming an inspiration for your own spirit.
Education and Information
Another important role of the group is to educate the caregiver. We have found that better understanding of the disease leads to an improved ability to cope with the many stressful situations that the caregiver must face each day. With more knowledge the caregiver feels in control and therefore better able to deal with each new stage. At this stage of research, very little can be done to change the course of this relentless disease, but we can prepare ourselves to face the inevitable decline of our loved ones. Acceptance is not easy, but it is possible. It is made less painful when the caregiver is better informed.
Caregivers also find that there is much knowledge to be gained from each other that will never be found in a book. When discussing problems, a group of caregivers can often discover new and creative ways of problem solving. Living under circumstances can many times cause caregivers to lose perspective of their situation. Talking a problem over with others helps them to see new ways of dealing with difficult situations. Once caregivers begin to think creatively, they are often better able to cope with new situations as they arise. The day-to-day tips that caregivers share with each other is an invaluable resource of the support group.
The support group also directs its members to community resources. Some groups develop resources of its own for use by its members. In most areas, there are few community services designed specifically for Alzheimer families, but there are some general resources that families can use if they meet the qualifications. The problem is that most families have no idea what resources are available and how the various systems work. The support group cannot possibly know every service in the community, nor can we counsel every family in need. Our job, however, is to know the agencies that can provide guidance through available social service systems. The Area Agencies on Aging can be valuable sources of information. Working with a professional social worker through such an agency, families are guided to state and federal services for which they qualify.
Advocacy
Another major role of support groups is advocacy. The public has finally become aware of Alzheimer’s disease, however, this does not mean that the problems Alzheimer families face in a system that is unresponsive to caregiver needs are fully understood. Caregivers are frustrated by widespread ignorance and neglect of their problems. It does not take long for the members of an independent support group to realize that the root of many problems can be found in local, state, and federal governments, all of which are largely unaware of the needs of caregiver families. Upon this realization, a support group may conclude, as our group surely did, that there is strength in numbers and that joining the Alzheimer’s Association was the most practical course of action. The Alzheimer’s Association is the organization leading the way for Alzheimer’s disease advocacy at the national and state levels. Locally, the support group becomes an advocate by presenting speakers for community organizations, writing letters, and discussing problems with neighbors. Each caregiver can become an advocate in some form.
Special Projects
Many support groups discover that special projects are well worth their time and effort. Projects can involve fund raising, education, advocacy, or patient and family services. There are several ways they can be beneficial. Special events offer opportunities for media coverage which draws attention to the services the group provides and also furthers public awareness. Projects can give caregivers the opportunity to feel they are taking an active role in battling Alzheimer’s. They are able to see themselves as a small part of a much bigger picture. For groups associated with the Alzheimer’s Association, local support groups are offered the opportunity to take part in their programs and projects as well as nationwide activities. Knowing your efforts are bringing about change can help caregivers to feel more empowered and less of a victim of this cruel disease.
Tags:alzheimer association, Alzheimers Disease, caregivers, education, emotional support, health support groups, ill health social isolation
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