Around the World, Those Living with HIV/AIDS & Other Illnesses Depend on the Voluntary Work of Care.
by Patricia Nell Warren
According to the Center for AIDS Prevention Studies, “AIDS care services in the U.S. have shifted from hospital-based care to community-based and in-home care. Rising health care costs and many people’s preference to receive health care, and, when possible, to die at home, have driven this trend. The percentage of AIDS deaths in hospitals decreased from 92% in 1983 to 57% in 1991. Informal caregivers have helped make this shift possible. Informal caregivers of people with AIDS (PWAs) provide practical help and nursing care at home. They are often the lovers, spouses, friends, or family of someone with AIDS and are not professional care providers. The service they provide is essential to the scope of AIDS care services and saves society great expense.”
That trend is no less true in some countries abroad. Recently an American friend of mine who now lives in Pattaya, Thailand, shared his thoughts on volunteer work with people hospitalized with AIDS. Robert Ganshorn, fifty-seven, former private entrepreneur (Ganshorn and Associates, Inc.) describes his religion as “Whiskeypalian” and has been doing this kind of volunteer work for years.
Patricia Nell Warren: Robert, can you share a little about how and why you and your partner moved to Southeast Asia?
Robert Ganshorn: We first traveled to Thailand in 1992 for our wholesale business. We enjoyed the people, culture, and feel of the country, and earmarked it as a very special place. In 2007, after five unrewarding years of hurricanes in Florida and frustrations with Medicare’s refusal to recognize my role as my partner’s caregiver, we decided to relocate.
How does the Thai healthcare system differ from that in the U.S.?
Besides being a destination for medical tourism by people around the world, the hospitals in major cities have high standards and are a bargain compared to those in the United States. The key consideration is location, which I researched carefully before coming. All Thai citizens have health coverage in provincial government hospitals and area clinics at low costs. These institutions are crowded, but filled with truly caring staff and provide a very impressive level of care. AIDS drugs are provided at little or no cost to those afflicted.
So the Thai system is friendly to foreigners?
Not just friendly to foreigners, but welcoming. Here, for the first time, I am considered to be my partner’s arbitor of care if he is unable to make decisions for himself—he suffers from senior dementia. I do not have to fear interference from the government or surviving members of his family.
How did you get started caring for people with AIDS?
It started back in the U.S. As with all such things, the first was one of our close friends. I was also an early volunteer at Howard Brown Memorial Clinic in Chicago in doing a research study in the early 1990s doing monthly blood draws. The goal was to test gay men who were not HIV-positive, but who had had hepatitis as I had in the mid-1970s. The hope then was the beginnings of a vaccine, but it was before we knew the virus mutated. We also supported “Gifts for Life” charities through our wholesale business and cared for numerous acquaintances and friends who needed respite for a weekend from the care needs of their partners. We had a busy guest bedroom for a while. I cared for four such people in Chicago.
Tell me about the elderly gentleman with AIDS that you’re caring for now.
He became poz in the U.S.A. and has lived in Thailand for about six years. I never knew he was HIV-positive until his sudden hospitalization ten days ago. He is suffering from two types of pneumonia and is receiving two IV drips daily of the highest potency of antibiotic plus immune system boosters. He transferred to a Thai provincial hospital as his care costs were $1,500 per day in intensive care and is now charged $180 per day and will be in hospital three weeks. One lung has already shown improvement. I saw him just today making a 100 km round trip to bring him English reading material that does not exist where he is located, a radio, a repertoire of corny jokes, laughter, and the second horizontal hair shampoo. He is on complete bed rest, but actually sat up in bed and gave himself a sponge bath today. I did his back. We are going to try to organize a stream of visitors every other day or so. Since he is surrounded by people who only speak Thai, he is lonely. This guy is a special person who has already decided to make the best of a tough situation and get better.
Is this gentleman going to get well?
Since I spoke to you last, he was suddenly sure he was going to die. He has bouts of fever, and their onset gives him great fear. Suddenly he was suffering from high fevers daily for a week. His four closest friends and I made the fifty-kilometer trip, and did not expect good news. But when we arrived at the provincial hospital, he was greatly improved over even a day before.
We saw the chief of AIDS immunology at the provincial hospital at her request. The elderly female doctor admitted us to her small modest office warmly and with the smile one expects from a Thai person. Dr. Kiriwat personally handles 100 AIDS patients, and had been in contact with specialists in Boston. She had given him a dose of steroids for his pneumonia-damaged lungs, and now told us that the steroids not only improved his lung function but also controlled the fevers. She said: “Yesterday I would have given him a twenty-five percent chance of recovery, but today I would give him a forty percent chance.”
The steroids also brought his appetite back. I had brought him some homemade tuna pasta salad, and we fell into my laugh and patter practiced from so many years of leaving customers smiling. We all breathed a sigh of relief when he asked us to order in a pizza! It became a party rather than a wake.
What is different between Thailand and the U.S., as far as the hospital experience for a patient like him?
Where he is presently would not pass inspection standards in an American hospital. Because of crowded facilities there are people in a ward containing fifty people. When my friend arrived there was no bed to put him in so he had to remain on his transport gurney for ten hours. Within a day he was transferred to a four-person room. Even so, in the Thai tradition of family, most patients are seen each day by family members. If you are hard up and lack family you might not get a sponge bath. But you will be fed and get your meds.
What have you seen in Thailand with stigma on HIV and AIDS? Is there less? Or more?
In a ninety-six percent Buddhist country with few Christians, there is no stigma, but an accent on prevention. Condoms are sold front and center everywhere. Thais believe, as do all Buddhists, in reincarnation to a higher or lower station depending upon how you have lived your life. Their teachings do not include demerits for sexuality or sexually transmitted diseases.
Here in the U.S., many people seem to have lost a consciousness about the importance of volunteer hospital and hospice care for people with AIDS. Why do you think that is?
It is very disturbing when I hear the remarks of many younger persons who speak as though becoming positive is inevitable. When the “Gay Plague” first began getting attention in America during the Reagan years, orgs like ACT UP meant business. Now that we have made so much progress in treatments, I think that some parties consider the issue solved. But AIDS horribly affects quality of life.
Do you have any general comments on volunteer caregiving?
I have always believed in what I call “random acts of kindness.” The worldwide recession and the Thai political conundrum have badly affected Thais and service providers. I find myself buying a lot of roast chickens lately to give away to needy people I know. We sponsor a Catholic charity here in Pattaya only because they care for retarded orphan children.
Bottom line: Whether it’s the U.S., or Thailand, or Africa, AIDS caregiving is a global issue. U.S. AIDS caregivers have actually been the subject of studies, because of what has been recognized as severe job-related emotional stresses. From IRIN, a project of the UN Office for Coordination of Humanitarian Affairs, came this comment about needs in one African country: “Swaziland’s home-based caregivers are too few and too poorly paid to cope with the growing numbers of bedridden AIDS patients, but in the absence of adequate health facilities and trained professionals, they are seen as the immediate answer to a national emergency. Over 40 percent of sexually active Swazis are HIV positive.”
As the world’s medical needs continue to outstrip our ability to meet them, volunteer caregiving for chronically ill and dying people is one of the toughest, most vital jobs there is.
Author of fiction bestsellers and provocative commentary, Patricia Nell Warren has her writings archived at www.patricianellwarren.com. Reach her by e-mail at patriciawarren [at] aol.com.
Copyright © 2010 by Patricia Nell Warren. All rights reserved.