Caring for Caregivers

Today we started with a new phase in our home-based caring project for people with HIV/AIDS – a program specifically aimed at helping our 180 caregivers to cope with the work they are doing. For this purpose I asked a friend of ours who is a (Christian) psychologist to assist us. Obviously it is impossible to work with the entire group of caregivers at one time as they are stretched out over a large part of Swaziland. In any case, to really do this efficiently, we have to work with small numbers. We therefore arranged to meet 20 of the caregivers this week and next week we will meet another group of twenty and continue in this way.
The session today was focussed to a large extent on determining the dynamics which cause negative feelings (or loss of strength) among the caregivers and what causes positive feelings (or obtaining strength). Some of the causes of negative feelings which were identified are personal feelings of loss, when a patient whom they had taken care of suddenly dies. There is also a feeling of helplessness when they know that basic medicine (painkillers, multi-vitamins, antiseptic, etc) could make a huge difference, but it is not available. Some patients and their families are also difficult in making the caregivers almost part of the family (which sounds good) but then expecting the caregiver to solve all their problems. Some patients are supposed to use ARVs but only use it for a month or two and then refuse to use it again and the caregivers know that this is probably going to lead to a speedy death of the patient.
On the positive side the caregivers have formed a very strong bond with each other and they said over and over again how important this was for them. We force our caregivers to take at least one day off from their work and on that day we meet casually to allow the caregivers to share their stories and in such a way come to terms with their emotions. But the best part for me was to hear how they received their strength through prayer. Now, the psychologist had recently done a similar exercise with a group of caregivers from a more secular NGO and she specifically remarked afterwards that they had also mentioned a number of things through which they got strength to do their work, but the faith issue was totally lacking. At least ten times today we heard from these caregivers that they had learnt to pray about their work and their needs and for their patients and this helps them to go on.
What it takes from a caregiver to do this type of work, nobody will know who had never done it. I have come to the conclusion that my main task is to ensure that our caregivers do not collapse under the pressure of the work they are doing. It was great to hear that this group (who have been doing this work since January 2006) still feel positive and excited to keep on doing it. Taking care of the caregivers is becoming a worthwhile task.