Wednesday, September 28, 2011

Home-based Care Visit. Polana Canico, Maputo City, Mozambique

RE the photo above... My friend lost my pen while we were out on the visit I describe below. (Strange how I was initially annoyed at losing a pen, particularly when you read below about the subsequent experience I had!) About 45 minutes later while we walked to another house in the neighborhood, I glanced over at some bushes only to see a little boy chewing on ... you guessed it... my pen. He seemed to be enjoying it far more than I ever had. His picture is above. As I tried to show him the picture I took on my digital camera he ran away crying. I felt so bad!
As for the rest of the story.
My first day back to work after returning from a visit to the USA to see my children and parents in Arizona was SO profound I decided to write about it. And I got some pictures together for you to see. I got to the VSO office and my Program Manager, Quim, said "Are you ready?" Not knowing quite what I was ready for, I said "Sure!" We were heading out to a home-based care visit with a two person delegation of visitors from Ireland. One of the visitors was Averil Power who is a Parliamentarian, a Senator from Ireland. The other, Gerry Thompson, is from VSO Ireland and works in fund development. Lovely people. They were extremely engaged, willing to experience to some very extreme situations. Averil is the one in the suit and heels. Gerry is in the VSO shirt.
The photo series begins with a visit to Polana Canico, Maputo City to the headquarters of an association that is made up of women who volunteer to go to the homes of other women and families who are infected with and affected by HIV/AIDS and are in need of home-based care. All of the women volunteers, themselves, are infected with HIV/AIDS, and many of them were formally people who received home-based care from the association. There are a number of these associations around the country. They have very little funding. The women are working for the most part in their own communities so, beyond helping family members, they are often helping their neighbors. You will see pictures of us approaching the house and you will see the sort of trash and garbage and poor living conditions that you have seen in some of the other photos I have sent.
The association doesn't have funding to give caretakers equipment to use. The women care-givers will go out and buy things and make their own kits. One of the care-givers who is very involved in this particular visit is Janet. Her kit, for example, had a rubber apron, rubber gloves, a mask, some soap, some cloths, and some other things I didn’t see. When we got to the house of the women for whom they were going to care, she told us that the soap is a gentle soap that she brings with her, and that won't irritate Natalia's fragile skin; as there is no soap at the house Janet always brings hers. Celia, another woman in the photos, also had a kit she had made. Adelia, the third volunteer, did not have a kit and did not wear gloves and a mask, a practice which is risky. In fact, there is a lot of conversation about the heavy risk that home-based care-givers take and the incidence of infection - acquiring HIV/AIDS - and of exacerbating other illnesses in someone who is "dormant" or stable; how being around illnesses that AIDS ravaged systems can no longer fight off are contagious, and can this trigger a dangerous decline in health for the care-givers as they are all HIV/AIDS infected, even though they are in remission or are "healthy" and responding to treatment. This risk is a testimony to the women who do care-giving work not only for their loved ones, but for their neighbors. It is incredible that they take the risks they do to help out others suffering; the notion of "paying forward" taken to an amazing personal and risky extreme.
The people they help tend to be very very ill. The pictures you will see of the woman who is ill, Natalia, are alarming. She is in advanced stages of AIDS. She had not received antiviral in the past so that is now something she is receiving through the association. Natalia lives in a one room hut that she shares with two grown daughters, ages 20 and 22. The daughters were not there when we visited and had not been there for two days. Natalia is too ill to get out of bed. In fact she cannot sit without assistance so she had not even been moved since her daughters left two days before. Janet is a care-taker who lives nearby. There are also two other caretakers you will see but Janet is the one who does most of the care for Natalia. When we arrived there was a pot - a small pot - of soup with a cover on it. It had been left there two days earlier and had not been touched - Natalia had not eaten for two days. The soup was not fit to eat anymore and the women had not brought any food with them, not knowing the daughters were away visiting. They would have to return with some food for Natalia.
The care-givers have been trained to make food that is nutritious and helps digest the ARV drugs which are very hard on the body if not taken with the proper food in large enough quantities. The association does not always have enough food to distribute so neighbors will try to supplement. Janet had made the soup and added herbs from her own garden. Janet told us that she had been as ill as Natalia a couple of years ago and had recovered. While she was helping Natalia she started to cough on and off; I don't think she is actually doing too well herself.
While at Natalia's house, the women peeled layers of blankets and sheets off of her and took some out to wash and air. They threw out the bad soup. They washed the floors. More importantly they gave Natalia medication, checked her body for sores and signs of infections on her skin. Janet bathed Natalia, and asked me to come and take photos while she did this. I took a series of shots while she bathed Natalia’s upper body, though to me it felt invasive, but Natalia and Janet wanted me to get photos so other people could see what the reality of AIDS looks like and the care that the volunteers give. I wasn't comfortable photographing the bathing of Natalia’s lower body and I stepped out for that time.
The other people I was with were nervous, just as I was, that I was taking photos. One of the volunteers explained to us, saying that it was important to document the work they do and to see the need that is there for support, as well as funding for things as simple as soap and cloths and basins to use to wash people.
When we arrived at the house, it was buzzing with flies. You will see that Janet carefully washes Natalia's eyes as there were flies on her face when we got there. The air was claustrophobic and close feeling, stagnant, and sickly. I was ashamed that I worried about what I might catch by breathing the air, while these women were handling the bed sheets, washing Natalia, and so on. I was just standing there taking pictures. Once the doorway opened up (there was a cloth in the doorway earlier) and the floors were cleaned, and the bedding changed as much as possible while Natalia was still laying in them, there were no longer flies in the house. It felt cooler and cleaner and the air was refreshing instead of stifling.
When the women were done washing Natalia, they carefully tucked her in with clean sheets and blankets. It was very warm out but she needed many covers.
The other visitors looked stunned when we left the house. Maybe I did too - I don’t know. No one was taking my picture.
We walked about 5 minutes to another house and met a woman named Maria. She shared that she had also been deathly ill over a year ago - maybe two - I didn't catch that. The association had saved her life and helped her start a small fry bread business. You will see pictures all about that. Also you will see Averil and Gerry and Quim and their interest in what Maria was doing. She wanted Averil and Gerry to have some of her bread and gave us a plateful; it was too hot to eat right away - we took it with us. We bought some tangerines while we were there; Maria wouldn’t accept money for the fry bread so it was a way to be able to help out.
Something that I notice, and troubles me still is that while many of the women here will make amazing recoveries, like Janet and Maria, there are many women will not recover. Natalia may or may not survive. I think there was a sense of such relief to meet Maria because she was doing really well - but the number of women, men, and children who don’t make it is staggering. People are so quick to have an ease of mind by meeting a person doing well, someone who has recovered and is making a living albeit one with a limited income. It is too easy to think that, of course Natalia will get better - Maria did, Janet did... but the reality is that Natalia has a long and dangerous road ahead of her, and there is great uncertainly about her future actually before they can be relieved for her. Even Janet - who seemed so vibrant and was there nursing Natalia, introducing us to other women, showing us her house with well deserved pride - had started to cough, a deep chest sort of cough, while I was the only one in house with her while she bathed Natalia; a cough she seemed to try to hide when she was out in the open washing the sheets and bathing basin. I felt immediate concern for her; and I felt a sort of foreboding that she had extended herself beyond the limits of what her own AIDS stricken body - which has obviously been in recovery and remission - could tolerate. I watched her washing her hands and thought, "This is not a just care-giver. This is a woman who truly gives all that she is, all that she has, love beyond relationship."
The visit ended on a really good note. Janet led us on from Maria's to a very trim and clean house with a simple but lovely garden running along the pathway. The house was hers. She had built it after her recovery with the help of her family. A two room house made of thatch and wood. Upon entering there was a sense of peace and wholeness. You will see photos of it. What a wonderful culminating experience. She is a special lady.
The farewell hugs were lingering. You can't go through an experience like this with people so remarkable, such as Janet, without creating a special bond. It was hard to say goodbye - perhaps because the lives of these remarkable women are so obviously fragile. Ironically, they are the strongest women I have ever had the privilege to meet.
That’s the tour. Here is the link to the photos. Photos for Home-Based Care Visit,Polana Canico, Maputo, Mozambique
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August 2011