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Siyayinqoba Beat It 2005 Episode 23 –

Handling death and loss caused by AIDS

In this episode of Siyayinqoba Beat It! we looked at what community based projects were doing in instances where the passing of a family member seemed inevitable, either prior to the ARV roll-out or because of ARV waiting lists. We also looked at the discriminatory practices of life insurance and funeral policy companies and how they worsen the blow of a loved one passing by refusing to pay out the benefits from these policies.

Jason Wessenaar: Molweni siyanemukela kwi Siyayinqoba Beat It! Support Group. [Hello and welcome to the Siyayinqoba Beat It! Support Group.] My name is Jason and I’m part of Siyayinqoba, a support group of people living positively with HIV. Each week we get together to talk about issues that affects our lives with HIV from vaccines to mental health. U-Siyayinqoba nguhlelo lwako lokhuphila kangcono ne HIV/AIDS. Uma uphila ne gciwane le HIV [Siyayinqoba is your guide to better living with HIV/AIDS. If you are living with HIV] or you have a partner, a friend or member of the family who is HIV positive this programme is for you. How do we copy with death and loss. By now everyone in South Africa will have to deal with a loss of a friend, colleague or a family member to AIDS? Death is something that we do not want to talk about, but we have to talk about it and face the reality that many people are still dying because they are not accessing ARVs soon enough. What should we do when someone close to us pass away? Apart from organising funerals and the stress of covering the cost there is also the emotional pain and suffering. Remembering those who have gone is part of the healing process after the loss of the loved one. We welcome Matshidiso Habana to the support group. Matshidiso is our youth guest today in our discussion between death and loss. First let’s see what we found out when Siyayinqoba spoke to people about how they copy with death and loss.

Preparing our children to cope with loss

Narrator: Emuva elokishini laseKhayelitsha abafazi abane HIV bahlangana njalo ngaphakathi kwesiphathi seRed Cross bakha izincwadi zesikhumbuzo. Izincwadi ezinto iziningi izizokhunjulwa abazozi shiya emuva bazishiyele izingane zabo. [In Khayelitsha, HIV positive women meet each other regularly in a Red Cross Container. They are putting together memory books. Books with lots of things to be remembered which they will leave behind for their children.]

Woman: When my baby is old I must take this book to my baby to tell that your mother is HIV positive, I don’t want to tell by other people say your mother is die by HIV positive it is the disclosure of me that is why I was feel well.

Narrator: Kuqale owesifazane ngamunye agwalisa isikhala isinganalunto ikasini yokuqala incwadini yesikhumbuzo ngophawu. Ifasithela ngalinye limele ibhale into ibalulekile ngephilo yomubali futhi lihambisana nesiyahlukho ngaphakathi yencwadi yesikhumbuzo. [First, the women fill in each of the empty spaces on the first page of their memory books with a symbol. Every window stands for an important part of its author’s life and relates to a chapter in her memory book.]

Counsellor: This book is from Nokhumpula Lungala, here is windows 1999 she was pregnant, 1995 her daughter get sick, she was diagnosed that she is HIV positive, at 2000 her daughter died and 2001 she get pregnate again her baby was also HIV positive. “I write this book for you Asanda my daughter.”

Jonathan Morgan (Bereavement Counsellor): Memory work provides a container were people can begin to contain their stories and make sense to them, with a begin, the middle and end. The end is actually not were we are at now but is the future is the element of hope, so people are ready to configure their lives and maybe look at how they might go in the future.

Mother living with HIV Narrator: I-Hospice yasegwini elise ningizumu isingaba sokugcina sephilo yabaningi. IHospice yabantu abashinayo. Virginia Nzama ubheka izingane omama bazo abanakhekhekwa lapha. Usashayela aye ezweni kuyohlangana omndeni, u funa ukwakha ubudlelwane nezingane ngekhathi unina asaphila. Lapha kulapha asebenzela khona ngama bhokisi isikhumbuzo. [The South Coast Hospice is the last stage in the lives of many people. It is a hospice for the dying. Virginia Nzama looks after the children whose mothers are being cared for here. She drives out into the countryside to meet a family. She wants to form a relationship with the children while their mothers are still alive. This is when she works with memory boxes.]

Virginia Nzama: They can paint whatever they want to do with their memory books and at the end of their painting I am going to ask each of them what did they paint in their memory books and why. It’s her mother who is sick but they are just being potential orphans the mother is being looked after by Hospice.

Boy: This is my mom, I draw her because I like her.

Virginia Nzama: They are living with their granny their parent past away. So they did their memory box, a hair pin which used to be her mothers and also a toy of a charger for a cellphone because one day I wish to have a cell phone. It was a long process for the children losing their mother and grieving.

Simphiwe: She could not do anything and my grandmother she would say please give me food and my grandmother would make her food and she couldn’t sleep at night her tummy was bad and my mother died on Saturday in the afternoon. Everyone cried. When I remember my mother that is when I open it and I’m sad and happy, Sad because my mother died, happy because I have her things.

Support group

Busisiwe Maqungo: Indlela besiyenza ngayo besifuneka si bringe more hope ye memory book, like singabhali ngokufa nokuthini. Izinto besibhala ngazo kakhulu is that mhlambe iminyaka emuhlanu difuna ukuzibona ndise ndaweni ethile, ndifuna ukuthi. Sisibhale zonke izinto zebomi bakho uyiyeke le HIV nje. Ngoba nxabefunda bafunde izinto ezibalulekileyo izinto ezizabayenza incume ngalaxesha bafundayo. [When Jonathan started the memory books in Khayelitsha, I was one of the first people who started the support group in Khayelitsha. Our aim was to bring hope through the memory books. We didn’t focus on the death and negative things. We wrote a lot about seeing ourselves in five years having achieved something. Seeing my children doing good things with their lives. You must tell all good things about your life and not focus on HIV a lot. You must write about things that will make them smile when they read it.]

Matshidiso Habana: Kunidwa ukuba bathathe note, banotise ukuba after i-funeral bayasafarisha psychologically. Sometimes mhlambe uve ukuba umtwana ulwile istratheni, awuyazi ukuba ulwele ntoni. U also angry esikolweni awazi ukuthi kutheni and which is akakhuphenduli nxa or awufumani i-answer nxa wuzama ukuyiphanda leyonto {IsiZulu} [We need to take note that some children, after a funeral, suffer psychologically. Sometimes the children get into unnecessary fights on the streets. Maybe they are always angry when they are at school. When you ask them what’s wrong you don’t get answer from them. Only to find out that it’s] a psychological problem.

Support group member: Wena u-coper kanjani? {IsiZulu} [How did you cope?]

Matshidiso Habana: I did not cope but I was acting like I’m coping.

Lihle Dlamini: Nguwena omdala ne? {IsiZulu} [Are you the eldest?]

Matshidiso Habana: Ha e {Sesotho} [No], I’m in the middle.

Lihle Dlamini: But mina I think is even worse uma kungabe umdala noma uphakathi kunabancane [when you are the eldest or the middle child], because you have to be strong for the younger ones. And yonke leyo burden iza kuwena mawuthi azange ucope [the burden lies with you because like you said, you didn’t cope] well and how are you doing now. {IsiZulu}

Matshidiso Habana: Angizange ngi-cope, u-TAC wangiyisa kwi-pyschology. Ndahamba ezo sessions, [I didn’t cope well until TAC (Treatment Action Campaign) took me to a psychologist. I went through the sessions], but so so.

Jason Wessenaar: Unjani manje? {IsiZulu} [How do you feel now?]

Matshidiso Habana: Okay cause kuhambe kuhambe because I’m still in contact nalabantu beba-busy nomama wami. Like abantu aba-positive like, ebalokho ebanceda kwi-community yabo. So I’ve taken over leyonto. [Okay cause like, I feel better because I’m still in contact with my mother’s support group. I work with HIV positive people whom my mother used to help in the community. So I have taken over that responsibility.]

Lihle Dlamini & Jason Wessenaar: Did you feel that you have to take over that?

Matshidiso Habana crying and can’t talk.

Lihle Dlamini: Bowuhamba nomawakho lapho bakha hamba khona and you fell ukuthi you owe it to her ukuthi labantu abagulayo, [You used to go wherever your mother went and now you feel you owe it to her to help others who are sick,] but also you have your own life, you still young, you have your own future you should also take care of yourself make time for yourself, pursue a career that will make you happy not ukuthi: “I owe it to my mother to do this” because at the end uzoba u philela umama wakho [you will be living for your mother] and you won’t be living for yourself and you won’t be happy. {IsiZulu}

Jason Wessenaar: Busi I don’t know what your experiences have been in terms of who you coped.

Busisiwe Maqungo: I think I’m still grieving the death of my child because I think mina kum in my case a lot is involved because when I found out I infected my child with HIV if felt so guilty it was like, like ndafilisha guilty kakhulu [I felt very guilty] that I have infected an innocent child now had I did not make it worse, like it is haunting me, its haunting me and ja, yiyona into endicaphukisayo ndibona abantwana [that’s why I get very angry when I see children dying] because when I infected her, I did know that I was HIV infected. Now I’m thinking if I knew lets say, I knew I was HIV infected and I was given i-Nevirapine and she was born HIV free. Ja, because every time when I think about it, I cry and I don’t want to cry.

Lihle Dlamini: At times wena you feel angry mhlawumbe angry at yourself, mhlawumbe kunomuntu o-close [when you’re close to someone] and that person dies of AIDS and you blame yourself ukuthi [because] I could have done something as much as kunento oyizamile [you have tried to help] and then you still blame yourself ukuthi [because] I could have done something, and at times you blame that person because kwesinye isikhathi umuntu uyamkhuza ukuthi ziban’bani yekela utshwala ukuze ukwazi ukuqala ama-ARVs or yekela ukuthi, ukwazi ukuthi uphile kahle that person continues with ama-habits naye trying to cope with the fact ukuthi u-HIV positive. {IsiZulu} [sometimes you keep warning people not to drink alcohol, when they have to start ARVs. You warn them to leave bad habits so that they can live healthy. Some people continue with the bad habits because they are trying to cope with the fact thay are HIV positive.]

Jason Wessenaar: One of the most distressing things to deal with is funeral policies and companies. We will talk more about this after the break.

Jason Wessenaar: [Welcome back to the Siyayinqoba Support Group] – the programme for every one infected and affected with HIV. We also welcome Chloe Hardy a lawyer from the AIDS Law Project. Welcome. Besides the emotional trauma one has to deal with when a loved one dies, a funeral cost can be a major crisis. Of course there are funeral policies but they always pay out the way they should. The numbers of death have increased since the AIDS epidemic. The increase in the mortality rate has increased fertile grounds for the fly by night funeral companies that exploit people when they are most vulnerable. Siyayinqoba spoke to Chloe Hardy and Reverand Mthethwa an undertaker from KwaThema who calls for the regulation of the industry. Let’s see what we found out.

Discriminatory practices of funeral and life insurance companies

Narrator: In 2004 Beat It! exposed the exclusion clauses in many funeral policies that meant that policy did not pay out if the causes of death was HIV or AIDS related illness.

AVBOB building Vuyani Jacobs (Reading correspondence from AVBOB): Dear Beat It! with regards to the questions you have raised on AVBOBs stance on AIDS, I would like to point out the following. All clients found to be HIV positive usually via the LOA records shall have his or her application for insurance declined by AVBOB.

Chloe Hardy (AIDS Law Project): So the whole lot of civil society organisations marched on AVBOB and demanded that AVBOB change this policy to stop discriminating of people living with HIV. And AVBOB immediately did in fact change their policy and a new way of operating there is no exclusion of HIV/AIDS in their policies. What they do is have a waiting period that applies to anyone whether you are HIV positive or HIV negative. You take out the AVBOB policy; there is a waiting period and then after that regardless of what you die of you will be covered; they will pay for your funeral.

Narrator: Beat It! 2005 spoke to Reverend Richard Mthethwa about the problems with burial society and small funeral parlours.

Rev. Richard Mthethwa: Ngiphethe umsebenzi All Nations Funeral Parlour. [I am in charge of the All Nations Funeral Parlour.] HIV/AIDS affects our business because on average we bury four to six young people with AIDS on a weekly basis the rate is very high. Ngenxa yokuthi umsebenzi ayikho kangako, abantu bayaphanda bezama ngayo yonke indlela yokuthi baphile. Ngenxa yokuthi futhi abantu abanama-premises wabo, kwesinye isikhathi kufunekha ukuthi uqashe noma usebenzise izidlu, seba sebenzisa nezidlu manje, abana ma-fridge abana insection, ukuthi kune negligence kancane kwi-regulation, kune negligence kancane kwi-Department of Health, njalo ka njalo. Kuma-service providers, things like cleanness, hygiene, mechanical things, machines, equipments and other things. Yiyo inkinga esinazo, abanye bazenzela amabhokisi angena SABS standard, bayawa manufacture amabhokisi, amanye amabhokisi athulula abantu, kanti nangedlela yokufundisa abantu ukuthi kufuneka bawastorishe kanjani, how high ibhokisi from the floor, ngoba kufuneka ukuthi ibhokisi liphakhame kwi height ethile lingabi ne-moisture ngaphantsi, lento iyenza amabhokisi athulule abantu. Kwiyihlazo ukubona isidumbu sesiwa kwibhokisi lisala phezulu. Inkinga yama-burial societies akhona, ukuthi uma loyomndeni ungashonelwa abantu baze babebathathu, babebane kulandelana. I-burial society ayisenayo imali yokubhandala labantu, yokunikeza umdeni i-compensation yabo, kuyinkinga kwelokho, yizo izinkinga ezikhona. {IsiZulu} [Due to lack of employment, people try many things to make money. They don’t have proper funeral premises, sometimes they rent or use their own houses. They don’t have a fridge and they are not inspected due to negligence regarding regulations with the Department of Health and service providers; like cleanness, hygiene, mechanical things, machines, equipments and other things. Others make coffins without the SABS standards. So some of these coffins are not in good shape, people need to be taught how to store these corpses, how high the corpse should be from the floor, because there is a certain height that a corpse should be from the floor so that moisture doesn’t get underneath, because this causes coffins to weaken. It is such a shame to see a corpse falling from a coffin. The problem with burial societies is that if a family loses three or four members in succession, the burial society will not be able to pay for it all.] I don’t think it is the right policy a HIV person should have a two year waiting period, like suicide, suicide normally they don’t even pay them you can’t claim for a suicide but that is death I mean it affects the remaining family members not the dead person. I think there must be an adjustment, kumele kube nentwanyana elungiswayo ngama-funeral policies. [there must be an adjustment in the insurance policies.]

Support Group

Jason Wessenaar: Chloe what are the current status with the insurance companies, I know before there were a lot of exclusion around with HIV and AIDS.

Chloe Hardy: The situation is quite different to what it was a few years ago. What we’ve got now is the situation where most of the insurance, funeral insurance providers that are only funeral providers; that is all that they provide that is funeral insurance, they usually do not discriminate on the basis of HIV and AIDS. There is exception you do get companies that are putting in unreasonably long waiting periods but on the whole the funeral insurance companies are accommodating people living with HIV and they don’t have the exclusion clauses in their funeral policies. If you look at, for those of you who have an older policies, look at your policy you will probably find an exclusion clause in it. What you need to do is then phone the insurance company and find out are they still using these clauses are they still enforcing them. If they are still enforcing them and they are not going to pay out; just cancel that policy, surrender it get your premiums back and go and take your business to a company that is going to cover people living with HIV. The problem that we are really having these days with funeral insurance its not with the funeral insurance companies but with life insurance companies that are also selling funeral insurance. And what you will find is that in the funeral insurance policies they will still have exclusions or they will not cover you if you test HIV positive. Now what we are really calling for people to do, we are saying to people, people who are providing funeral policy that cover people living with HIV, there is no need for us to be supporting these companies that still discriminate.

Busisiwe Maqungo: But Chloe uma ungabe uyifundile lento [once you’ve read the policy], are you in a position to read it before you sign it you are in a position to say no I don’t want to sign this.

Chloe Hardy: Look the important things you need to remember: do not be rushed into a funeral insurance policy is something for life and for death. It’s something you are going to be paying for, for a very long time, and it’s something which is going to help your family should you die. It’s an important thing do not get rushed into it.

Jason Wessenaar: We talk more about funeral policies and undertakers emva kwe-break. {IsiXhosa} [after the break.]

Jason Wessenaar: Siyanemukela kuSiyayinqoba Support Group {IsiZulu} [Welcome back to the Siyayinqoba Support Group] – the programme for everyone infected and affected with HIV. We are talking about funeral policies and undertakes. Should we just regulate the industry?

Chloe Hardy: If you feel very strongly that the industry should be regulated you have a council that is independent, it was appointed through the law by the legislation who regulate the medical AIDS industry and we are now seeing that kind of discrimination is no longer happening because it is prohibited by that law.

Lihle Dlamini: Today we are talking about handling death and loss and one of the things is we never think of making a will. How important is it to make a will? And my second question is we know there are many burial societies akhona emalokishini [operating in the locations] and I’m a person from elokishini and mina ngidlala umasincwabane funeral parlour [the locations and I’m involved with funeral parlour]. And I also have an accident cover but I need to know ukuthi kubalulekile yini ukuthi [is it very important] should I also take a funeral policy, is it important and what are some of the challenges we face kuma lawa akhona emalokishini? {IsiZulu} [with burial societies that operate in the location?]

Chloe Hardy: Burial societies have been around in South Africa for many many years, it was originally a community response; it was not companies coming and assisting people with funeral insurance. Some burial societies are decent stable organisations that can really honour; really their commitments and pay out if you are going to need that money, some of them are badly managed. When you are joining a burial society speak to some of the people who belong to it, find out how long is has been going, is it registered with the association that governs burial society does it have a track record, does it have a bank account, how are the finances managed, can they show you financials from last year, check up on it to make sure it is properly run. Some of them if people with good intentions can make a mess of running these things and then you have a death in your family and when you need that money it’s just not available because it’s been miss managed. With regards to wills that is really important, I get lot of clients coming to me and say I have been diagnosed with HIV should I make a will and the answer is regardless of your HIV status is; you should have a will. Everyone should have a will and the important thing about having a will is you are able to say exactly what you want to say, what you want to happen to your property after your death. It is very easy to make a will you can write it out yourself, you can type it up, or what you need to do is to make sure that you’ve got two witnesses who are with you when you sign it and they each sign it together and you need to make sure that you sign it at the end of the document if there is, leaving no space in between for someone to be able to add something that you have not written.

Jason Wessenaar: Thank you Chloe, Tshidi, the support group and viewers at home. Today we learned that we must not forget who have died. The loss of someone is hard to live with. There are things we can do to lessen the burden of losing someone. It’s very important for everyone to have a will that’s signed and foolproof. Insurance companies that offer funeral policies are supposed to pay out even if the cause of death was HIV related. If you have an old insurance policy, read the fine print to check if they have an exclusion clause for people living with HIV. If so talk to another insurance company that will change that policy for you. There may be a waiting period for people who are living with HIV, before any payment can be made out. Talk to your insurance company about their waiting period. Other funeral insurance companies may have false promises and can’t be trusted. Find out from people who give advice on funeral policies. We hope that you enjoyed the show and that you are feeling the Siyayinqoba Spirit; that together we can Beat It! If you have any questions views and comments of the show please contact us on P.O. Box 62, Muizeinburg, 7950 or you can log on into www.beatit.co.za or email us at info@beatit.co.za. Join us again next week in the Siyayinqoba Support Group. Until next week stay healthy and be blessed.