Patricia Watson, Senior Staff Reporter
CARING FOR the terminally ill can literally suck the life out of caregivers if they are not careful. Many people can and do become so emotionally attached to those they care for that losing them tend to be emotionally draining.
But despite this, a significant number of Jamaicans have dedicated their lives to caring for persons with AIDS. Unlike other terminal illnesses, the stigma associated with HIV/AIDS has made many Jamaicans pariahs even among relatives. Many of those affected are set aside by those they thought were friends.
It is the loving touch, the hugs and smiles of people they did not know, or, might not have cared about, which have lengthened the lives of many infected with HIV.
Orchid Gowe and Donette Wellington have given a combined 12 years to persons living with HIV. Both nurses are the heart and soul of the Jamaica AIDS Support Home Based Care programme, where they visit the homes of clients with AIDS or hospitals, giving the love and care one could only expect of family.
"For me basically, I enjoy nursing. It doesn't matter what type of nursing as long as it involves caring for persons and I enjoy caring for anybody, as long as they need me. When I started in 1996, I wasn't aware of HIV, but I used to visit the hospice and see the people. When I started working here, I wasn't really scared, because in my mind I was thinking this is something I want to do," Mrs. Gowe explained.
According to her, working with HIV positive people is emotionally draining. She describes it as something that is always with the caregiver at home, when you close your eyes to sleep.
"What I do, I pray, I ask God for strength, because at times the cases are really challenging especially when you see them dying," she noted.
"You become attached to the clients and you wonder how to deal with it. Working along with these clients, sometimes you get so attached, so when you see them die, it leaves a sort of emotional stress with you."
Miss Wellington noted that in caring for persons with AIDS, one must know his or her limit.
"You see in this work you have to know your limits, how far to go, how to cope. You do get attached to clients, but we have to learn when to let go. Not that we desert the person, but we prepare ourselves emotionally. Spiritual strength is important. We are still affected by the passing, but we are able to deal with it," Miss Wellington stated.
As part of the process, she said they take part in the planning of the funerals, and in some instances take it over when the families don't want to have anything to do with the deceased.
Many of the clients that Mrss Gowe and Miss Wellington care for are abandoned by relatives and friends. As a result, they become like family to these people.
"Some of them were locked away; nobody interacted with them, nobody wanted to be close to them, so we are the only family sometimes. It leaves a sense of achievement that you at least are doing something," Mrs. Gowe said.
The JAS has been involved in Home Based Care since 1991. The objective of the programme is to provide quality practical nursing care and emotional support, information and counselling to persons living at home and covers both those affected and infected by the infection.
Miss Wellington explained that JAS also assists in the provision of medication where possible, advice on nutrition and the distribution of packages, consisting of food stuffs, toiletries and disposables.
Within the last five years, the JAS through its Home Based Care programme has provided bedside care to six clients, five of whom have died. There are currently 43 persons on the Home Based Care programme.
Both caregivers agree that although hospice care is needed, home based care offers greater privacy.
But despite the care being given to many AIDS patients, Mrs. Gowe noted that medication is a major setback. She said many lives could have been lengthened, but "medication is still not affordable to our clients as they are not working. We don't have the funds to fill the prescriptions, even though we would have wanted to."
Transportation to rural communities is also a problem. In many instances, caregivers have to walk a part of the way to see clients. But above all, many lack proper nutrition, which makes them more vulnerable to infections.
Other difficulties highlighted by Miss Wellington has to do with general population's treatment of those infected and the lack of education and care given by family members.
