Care-Givers expression forum – Special UnHIDE – 19/07/2020


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Author- Dr. Poornima, Neurologist, Director (NICHE Advocacy Foundation)

UnHIDE (not just an open mic) is a free expression forum which changes its form as per needs of audience.

On 19/07/2020 we had a special session for sharing by patients and Care-Givers of chronic illnesses. This was arranged on occasion of WORLD BRAIN DAY- 22 July.

Many Care-Givers from all over Maharashtra and one from Delhi, shared their experiences. Several aspects of care giving were freely and openly discussed.

We are never born as Care-Givers. Care-giving happens to us – often suddenly. The patient has the luxury of symptoms to realise that’s something is going wrong. But the unsuspecting Care-Giver is caught unawares and is thrown into tasks he or she was never prepared or trained for.

Care providing requires certain skills to make life easier for the Care-Giver!

We will see a few of them in this blog.

1) Acceptance – often people drift around in circles without accepting what has happened. Non-acceptance / denial is a time and energy consuming state. Of course it is necessary to question whether the diagnosis is right or not. But once you are done with the expert second opinion (which is your right) you should spend time in the process of accepting things for what they are. Feel free to discuss with your doctor. Make a list of questions you need to be answered. Get them clarified. But once that is done and everyone is sure that the diagnosis is what it is and curative treatment is not a possibility, you have to sit and accept the situation as it is. This raises philosophical and spiritual questions in our minds. But they must be dealt with. Acceptance is the first step towards a proactive approach towards the situation.

2) Asking for help – often the Care-Giver feels that she/he will manage everything personally. They feel helpless and alone. They don’t reach out for anybody’s help. But this adds to their stress. Often specific help is not available freely. Bit someone knows about it. You just haven’t met that person who knows whether and where the help is available. Try to find out about support groups in your area for that particular issue. Support groups are a fantastic medium of problem solving. They also have data for specific help available. Our NGO is setting up a support group and skill development system for Care-Givers, with monthly sharing platforms. Do avail of that facility.

3) Delegating tasks – some Care-Givers, especially women, feel that they must do everything themselves otherwise they are not being a good Care-Giver! They battle with guilt of not being a self-sufficient Care-Giver. But asking for help and delegating a responsible task to someone else is the hallmark of assertiveness. Sometimes the other person may even be better trained at that task than you. So seek help, avail it and delegate responsibility.

4) Conserving personal identity – take time out for yourself. Do not be 100% absorbed in the process of care providing. Conserving your identity will keep you healthy. And your health is important for the process of care giving. Construct your week such that you can relax a bit, have some time for a leisure activity, exercise and a quiet ‘me-time’. It is necessary.

5) Taking care of personal health– Remember the in-flight announcement – before helping the other passengers, first put your own oxygen mask properly.

If we don’t look after our own selves we’ll, how will we look after another person, especially the one who needs our care ?

So be careful, accepting, seek help, reach out and share, delegate tasks and take care of your own health!