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Start a caregiver’s group

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HealthWiki > A Health Handbook for Women with Disabilities > Chapter 15: Support for caregivers > Start a caregiver’s group

One important way to improve health for caregivers is to talk with each other. Both caregivers and people with disabilities need support from others who have similar experiences. Talking with others about your needs and feelings can help you feel less isolated. You can also share ideas with other caregivers about how to make things easier and build support systems for you and all the disabled people you assist.

a woman in a wheelchair speaking.
I need care all the time. I have a group of attendants and friends who have formed a "take care of Mai" network. They talk to each other, help each other feel better, and support each other. They all like me, and I like them. It's like a great circle.

If there is not a group already, and you know
there are other caregivers in the community, it may be up to you to start one. Some of the strongest and most active groups began because of one person’s idea. A group working together can solve problems and do more than if they each work alone.

To start a group:

Find 2 or more caregivers who want to start a support group. If you do not know any families in which someone is disabled, a health worker may know of other families in nearby communities.

Plan when and where to meet. It helps to choose a place where everyone will be comfortable talking, perhaps a room in a health center, community center, cooperative, or place of worship. At the first meeting, discuss why you are meeting and what you hope to do.

Probably one person will be the leader of the first few meetings. But it is important that no one person makes decisions for the group. Everyone should have a chance to talk. Try to keep the discussion focused on the main reasons for the meeting. After the first few meetings, take turns leading the group. Having different people lead each meeting will help shy members participate.

2 people in a group speaking.
We found out
that all of us have the same kind of problems.
I can talk about my problems openly and get advice on what to do.
Together we help our children and ourselves
a man driving an auto-rickshaw with several children in the back.

In a poor community in Bangalore, India, several families of disabled children and adults have formed a support group. They meet once a week to talk and to make plans to promote and demand services in the community for persons with disabilities. They also own and operate several auto-rickshaws (3-wheel motorcycle taxis) to take children with disabilities to and from school.

Learn to support each other in the group

Often, people who are always assisting others are too busy to think about their own feelings. Or they think they have no right to feel upset, or that only the woman with a disability should feel upset. Even when people know each other well, it may take time to feel comfortable talking about feelings, experiences, and the challenges of being a caregiver.

It is easier for some people to speak in a group than it is for others. But speaking is not the only way people can express their thoughts and feelings. Try different activities, such as singing songs, creating poems, or telling stories to help each person participate in a way that feels comfortable for them. Some people may best express themselves by drawing or painting pictures.

a man and a woman speaking.
Why should we share our troubles with the whole neighborhood?
Omar, who can help us better than our friends? We all take care of someone who has a disability, so we must have some of the same problems.

Here are some suggestions to help group members feel comfortable and trust each other:

Listen to what others say. Think about how you want others to listen to you, and then try to listen to them in the same way.

Try not to tell other people what to do. You can help others understand how they are feeling, and share your own experiences. But everyone must make their own decisions about the best way to assist people with disabilities.

The support group can be a place where a caregiver can show anger or cry from frustration. By sharing experiences and ideas, you can help each other find ways to change the causes of these feelings.

2 men and a woman speaking in a group.
Rosa gets very angry if I try to change our daily routine. Do you have any ideas that will help me?
Mari used to be the same. Then we had a talk together. It is easier now.
How did you get Mari to talk with you? We have the same problem with our daughter.

Planning for action

A group working together can take action to solve many problems. Here are some useful steps for taking action.

  1. Choose a problem that most people in the group feel is important. Although many changes are probably needed, your group may be more effective if it works on one problem at a time. At first, pick a problem that your group has a good chance of solving quickly. Then, as the group learns how to work together, you can work on more complicated problems.
    a woman and 2 men speaking in a group.
    My mother cares for my daughter now, but her health is getting worse.
    I have a new job in the city. I just don't have enough time to do everything that has to be done at home as well as care for my wife.
    I need someone to look after my wife on market days.

  2. Decide how you want to solve the problem. List many ways the problem could be solved and pick the one that best uses your group’s strengths and resources.
    2 women and a man speaking in a group.
    We could probably all use help like that. Why don't we try to pool our money and hire someone?
    I wish someone could help me to collect wood and water and also cook a meal sometimes. Then I would have more time to help my disabled mother.
    Manisha is looking for work.

  3. Make a plan. Members of the group will need to do different things to get the job done. Try to set a date when each should be finished.
    a woman and a man speaking in a group.
    I'll find out
    how much we would have to pay someone.
    I'll ask Manisha if she would be interested in doing this work.
  4. When you meet again together, talk about how the work is going. Adjust your plan as needed if difficulties arise.
    a woman, a man, and another woman speaking in a group.
    Has Manisha been able to help make a meal for everyone?
    No, not yet. It
    takes a long time to collect enough wood for all of us, so she hasn't had enough time to cook.

    It's a big help,
    though, when we don't have to worry about getting the water and wood ourselves.

a woman speaking.
I have learned a lot from the women with disabilities I have assisted. I am so inspired by
their determination. They have taught me by example that we can all overcome the barriers we face to live a full and rich life.