i. Lack of information Caregiver 2 Page 1, Line 2, 3, 20, 21
‘My husband was HIV positive. I had no idea of his illness. It was only during his last days that I came to know. No one told me, Neither my husband nor the staff’.
Caregiver 4, Page 3, Line 11, Page 5, Line 7–9
‘No-one told me – but they had told my husband that the baby was getting fits. No-one told me the real problem. I, however, had doubts – God knows what is the condition of the child. They are hiding something from me…there is something in the matter. I had to search on the internet’. ii. Expected to be caregiver irrespective of ability/needs Caregiver 14, Page 2, Line 7–10, 23–24;P 4, L 32, P 5, L 1–3, 15, 16
‘Mother falling sick and my wife becoming pregnant and parents shifting in with us, everything happened simultaneously. Being a son, I used to hesitate but my wife learnt all these things-how to change the catheter, how to perform suction, how to give injections, how to feed her through the tube, how to change the diaper, how to clean the tracheostomy tube. Home nursing was very expensive but in just fifteen days, my wife learnt it. My elder daughter is now 10 years, younger is 4 months. Wife is busy taking care of my parents as well as children. First 3 months of pregnancy were tough but she managed her complications and also started caring for mother’.
Caregiver 9, Page 5, Line 9–10, 16–17
‘My daughter looked after my wife alone. My wife’s biggest worry was – ‘Who will lift me up and take me to the hospital? I can’t walk. How will our daughters lift me?’
Caregiver 15, Page 6, line 22,23
‘My daughter has to take care of the household work. The time meant for studies is wasted in this’. iii. Physical burden Carer 1, Page 6, Line 1–6
‘My mother would sit with him the whole day and throughout the night. He’d tell her to massage his head or press his legs. She’d always be doing something to make him comfortable. For her, there was no rest’.
Caregiver 3, Page 17, Line 12–19, Page 21, Line 26–29, Page 22, Line 11–13
‘She was also an old lady. Being by his side, she would help him up but, all her joints would start creaking. He was quite heavy. She would be up the whole night with him. She was almost 70 years, having multiple age-related problems-high BP, hypothyroidism and had been operated 4–5 times – for disc-prolapse, uterus had been removed. He would be up the whole night and keep telling her – ‘Turn me over. help me sit up…take me to the bathroom…take me for potty… do this… do that’ Then he would sleep in the daytime but she could sleep neither at night nor during the day’.
Caregiver 4, Page 11, Line 19–20
‘Now that I have conceived, I can’t carry him. I start having pains. In future, more problems will come up. So how will I handle him in that condition, I am tense about that’.
Caregiver 13, Page 5, Line 22–24
‘It was physically and mentally exhausting. Sending the daughter to school, getting her homework done…lack of sleep, cooking, cleaning, washing and feeding mother as well as the infant’. iv. Psychological burden Caregiver 2, Page 3, L 1–3 L 14–16;
‘When I learned he was HIV positive, I could not get up for two days from the shock. Kept crying. My eyes were swollen. Was in a very, very poor condition. My whole life was shattered. I thought of what will my children do? Who will take care of them?’
Page 13, Line 21–23
‘I had lost the will to live. I would rather be dead than go through all this. I thought of all the ways one could commit suicide’.
Caregiver 5, Page 18, Line 17–19
‘If something happens to us, who will take care of her? We think of that… worry a lot. Today we are there, but after us? My wife often sits and cries’. v. Insensitivity Caregiver 2, Page 4, Line 8–10
‘People would deliberately ask again and again, even when they knew it was HIV – ’What disease does he have? Why don’t you tell us the name of the disease he has?’ vi. Neglected emotional needs Caregiver 4, Page 18, Line 10–13, 17; Page 19, Line 12
‘Husband has at least his family to support him, I have no one… Even if I talk to my parents, they tell me that it does not matter. ‘Your husband has to meet his relatives. He has come on leave, let him go. It doesn’t matter’. No one understands me, and no one wants to understand. Other than loneliness, there is anger and frustration’.
Caregiver 4, Page 24, Line 33–35, Page 25, Line 1–5
‘It was just ten days ago that I had the miscarriage. After 1 or 2 months, that baby would have been in my lap so I was feeling that my baby has died but everyone else is enjoying. My husband was not at all upset…was having drinks with his friends and I was asked to cook non-veg and serve them. That really hurt… (in tears) Since then, I have stopped having any expectation from my husband also. How could he enjoy like this-it was not even ten days…and they were having a party at home… drinking… asking me to make lemon chicken…and this and that-I could not sleep the whole night… kept crying and crying… The day the miscarriage took place, I was alone and nobody even talked to me. My husband did not even talk to me as if, as if …somehow it was my fault. At that time, I felt that you are all alone in the world and whatever you have to do, you have to do it all alone by yourself. And that is something I have not forgotten till today’.
Caregiver 6, Page 11, Line 2–5, 14–15
‘My In laws had stopped talking to us. None of them would even ask us how we were’. vii. Managing things alone in absence of the husband Caregiver 4, Page 3, Line 33–37
‘We needed fully trained occupational therapists so we shifted here. I had to manage everything on my own – physiotherapy, speech therapy, hippotherapy, hydrotherapy – all these, for the last 4 years, I am getting it done’
Caregiver 1, Page 7, L 30–32
‘When my father died…I was in the unit and through the illness my wife managed alone…whatever last rites and rituals were to be done, I did that and went back to the unit…mother and wife were left alone’. viii Difficulty in traveling alone Caregiver 1, Page 3, L3, 4
‘Only mummy, missus, were there at home. Whenever he had to be shown to a doctor, one male would be required to accompany them to the hospital’.
Caregiver 12, Page 3, Line 3, 4, 8. 9
‘They called for review after every fifteen days. My wife used to carry him to the hospital every time. It was very difficult. It is 2½ h’ distance from my home – then one has to change two buses and then travel by auto-rickshaw carrying him’. ix. Difficulty in socialising Caregiver 8, Page 21, Line 14–26
‘Recently, we went home to attend a wedding; the 1st time in 22 years of service. We met so many relatives for the first time. We aren’t able to fulfil social and family obligations. As a result, people remain cut off from us. If they remain cut off, they will not support us’
Caregiver 4, Page 6, Line 23–28, Page 13, Line 2–6
‘Life comes to a stand-still. For the last 5 years, my life has stopped. I have no personal life. I never go to visit any relative. Neither do I have any society. No friends – Nothing. Only he is there (pointing to the son). I carry him to the hospital and back home. From home I go back to the hospital again. If you see my mobile list also, there are doctors, not friends…’ x. Loss of employment financial burden Caregiver 13, page 8, Line 24–27
‘My mother had a stroke and became paralysed when my wife was in early pregnancy. I have two small children and my wife is managing everything on her own. She had to give up her teaching job’.
Caregiver 4, Page 13, Line 22–27
‘I was teaching before he was born. So when his problem started, I left my job. And then I though many times that I should join back but I can’t join back because there is no one to take care of him like I do. I was a lecturer of history. What is the use of all my studies?’ xi. Disputes over legal and financial benefits Caregiver 8. Page 23, Line 9–11
‘Sometimes the wives’ names are not entered into the service record or provident fund and pension nominations. Often a young bride is turned out by her in-laws to avoid giving a share in the property.
Caregiver 2 Page 6, L 25–28
‘When the men from my husband’s unit came to settle the financial benefits after he expired, my sisters-in law told them that she is HIV positive-will not live. Whatever financial benefits are there, they should be given to our mother or to us, not to her. The BSF representatives said that as per documents, I was the recipient. It was only after my aunt, a teacher and the self-help group at the ART Centre threatened to hold a demonstration in the village, that they allowed the unit men to meet me and complete the paper work’. xii. Stigma Caregiver 2, Page 3,18–20, 22–23
‘I felt ashamed of telling anyone about it. Some people in the village got to know. They would give strange looks. I would step out of the house only after it was dark’.
Caregiver 6, Page 11, Line 2–5, 14–15
‘None of the in-laws have helped. My brother-in-law – his wife would not let him talk to us. They believed that if they talk to us… like my husband had cancer, so they would also get it or we would ask them for money. My in-laws never combed my poor children’s hair when I had to leave them alone at home. They did not ever wash or bathe them’. xiii. Ill-treatment by in-laws Caregiver 2, Page 5, Line 17–18, Page 6, Line 18; Page 14, Line 18–19
‘(In a choked voice). After he died, they harassed me. They would tell the relatives-‘Don’t know where she has been wandering to pick up his disease. They had a problem only with me. He was their brother. He could not be in the wrong. He was not at fault. They would gossip about me endlessly’.
Caregiver 2, Page 8, Line 14–17
‘I have become forgetful. I hesitate when saying something. Earlier I had the confidence to do anything. My in-laws literally drove me mad. I felt I was going out of my mind’.
Caregiver 2, Page 16, Line 19, 20, 24, 25
‘They even said to the children-‘You are dogs, coming here to beg for food.’ The children refused to ever go their house again. They have turned my children out of their rightful share in the land and ancestral house’. xiv. Anticipatory Grief Caregiver 2, Page Line 1–3, 14–16
‘I could not get up for two days from the shock. Kept crying. My eyes were swollen. Was in a very, very bad condition. Ever since I came to know, my whole life has been shattered. I keep thinking of how my whole life would be spent. What will my children do? How will they live? Who will take care of them?’
Caregiver 5, Page 18, Line 20-25
If something happens to us, who will take care of her? We think of that. Worry a lot. My wife often sits and weeps. I too sit and cry over the fact that today, we are there but after us, who will take care?
Caregiver 4, Page 27, Line 1–5
We are parents, we would never want that something should happen to our child but seeing his suffering… fumbling for words) seeing him…suffer so much, getting so many injections, taking so many medicines, needles pricks for tests… having seizures through-out the day, he is in such agony, it would be better if he were freed of all this pain (in tears). One keeps wondering how much he is suffering. It is better the child should be free of all this suffering… because really, you can’t see your child like that’. xv. Support from the organisation Caregiver 2, Page 12, Line 21–28, 36–41.
‘The attendant from the unit called up my in-laws and asked them-‘Is it only her responsibility to look after him? Can none of you come and stay with him in the hospital? The attendant’s wife would often call me and ask, ‘How are things, sister? How are you? Don’t worry. Be brave.’ Three-four times, she came to visit me in the hospital. She stayed with me. He had a friend in the Air force-his wife came to visit and stayed with me to help. She would make my husband’s favourite dishes, whatever he would ask for-and bring it to the hospital. Whatever financial help was required, that too, they gave. His own family did nothing to help’.
Caregiver 6, Page 7, Line 2–20; Page 8, Line 7, 19–20; Page 9, Line 30, 31. Page 10 Line 1–6
‘I feel better after coming to the campus… I got so much relief. Whenever there is any problem, I get prompt care. I sleep and eat properly. Earlier, I could not sleep at night. Earlier, I was not able to share all that was in my heart. Who could I tell? It was very difficult for me to stay in the village. My girls had to walk to school in another village. Now that I have been given a quarter inside the campus, my children are studying here. I am getting reimbursement of tuition fees. All the ladies help me. Someone brought books for my children. I really like it here. Now I want that my son should complete his education, I’ll fill his form and get him enrolled because I think this organisation is a good one’.