'It's hard being a HIV/AIDS caregiver'

BY NADINE WILSON All Woman writer

Monday, August 30, 2010

Tara F was 22 years old and just two years into her marriage when she found out her husband was HIV-positive. As if this news wasn't devastating enough, she learnt, too, that both she and the 10- month-old son they bore were infected as well.

Like most wives, she trusted her husband who was a pastor, and had never suspected that he was unfaithful. But despite his betrayal, she spent the last 15 months before he died taking care of him.

"It was a strain because at the time I was also caring for my 10-month-old child," she said.

The fact that she wasn't working made it even more difficult for her and because the couple kept their status a secret, there wasn't much support from friends and family.

"I had to beg and borrow," she told AW. "Funds were low and we had to be backward and forward from hospitals, doing different different tests and so forth. And because he also had liver cancer, we had to be moving from different hospitals."

Tara also had a three-year-old daughter from a previous relationship. But the mother of two said she never allowed herself to buckle under the pressure of being there for everyone.

"To be honest, I have never got upset. I cried, yes, because I was devastated over the fact that I was infected. I know that I am not this type of person who would be all over the place and so forth," she said, adding that the thought of dying and leaving her children behind weighed heavily on her mind.

"I was stressed out, but after a while I learned to cope -- maybe because of my son, because he was this active child and everything, so you tend to want to fight, but you don't know how," she said.

According to Tara, her husband was still able to help himself for the most part, but there were some things that she had to assist him with.

"I had to prepare meals, but he wasn't that sick that I had to bathe him. I had to follow him into the bathroom (though) to see to it that he didn't fall and break anything and so forth because at times he was very weak," she said.

As is the case for patients with any other illnesses, it takes dedication and patience to care for someone infected with HIV/AIDS. Family members can expect to make frequent trips to the hospital with their love ones or be constantly called upon to offer reassurance. In the final stages, the disease can result in shortness of breath, skin rashes and bumps, persistent fatigue, chronic diarrhoea, shaking chills and high fever, which means that infected persons would benefit greatly from having others around.

Given the commitment required to care for an HIV-positive person, co-ordinator for Eve for Life, Joy Crawford, said caregivers need more than grief counselling.

"They need more than counselling, they need training, they need specific skills to deal with someone who has AIDS. So it is not about counselling (to deal with) their own emotional stress. They need skills to manage the illness process that the individual goes through," she said.

Crawford, whose group assists HIV-positive women, said men and women have different ways of caring for someone with HIV/AIDS.

"There are some similarities, but when the men have to take care of the women, most times they may not be children involved in the household because most times those children might be in the care of another female and therefore their experience is a little bit different," she said.

In the case of women, "their whole maternal instinct kicks in and most times there are children involved, so they are looking after the affected partners and the children", she said.

However, caregivers on a whole are usually emotionally overwhelmed by their love ones' diagnosis, especially as they face questions like: Are we going to have to write a will for the children and do I tell my neighbour that my spouse is infected? Added to this is the fact that the caregiver will have to face the stigma that the HIV-positive person experiences simply because they are related.

"We have had those scenarios where a son may be taking care of a mother and none of his friends talk to him even though he is negative. So they carry the burden that the positive person carries almost equally," Crawford said.

"I had a situation where someone had died and the caregivers really had a struggle to plan the funeral because they didn't want anybody to ask what killed the person... So even in doing the funeral, it was a challenge for them because they weren't really what they would say to someone who came to express sympathy," she added.

Fortunately for Tara, everyone assumed that her husband had died from the liver cancer -- except her adopted mother who she confided in shortly before he died.

Crawford admits that sometimes the change in status for one partner does affect a relationship, but she believes it only creates a strain if the relationship was weak prior to the diagnosis.

"Those who stay are those who already had a great relationship before they found out that the person is positive," she said.

Although Tara has never received an apology for her husband's infidelity or gratitude for sticking by his side, love allowed her to see past her hurt and care for him. Her encouragement to other women who find themselves in a similar position is to administer care inspite of the situation.

"No matter the circumstances, do it with love. It's hard, yes... But in life, the evil always turns out to be good," said the woman who is now 36 years old and happy with her life.

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