Kiran - Interview 26
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Kiran is 55 and lives in the Midlands. He cares full time for his wife Hema who has depression as well as epilepsy, diabetes and angina. Over the last few years she has also had cancer and a stroke.
Kiran and Hema married in the early 1970 and had three children. Hema's health was not good, she had occasional fits and bad headaches. It took over 20 years before they learnt that depression was part of the problem. During all those years, Kiran struggled to help his wife and his children on top of his full time job as a Foreman. In the early 1990 Hema had a serious fit and was hospitalised. The doctors took a series of tests, including MMRI scan of the brain, but they didn't find out what was wrong. Kiran says the situation led to stress for the whole family, which may have impacted on the children's education. His daughter provided great support and helped out with household tasks. They didn't get much help from others. Financially things became really difficult too and he hadn't know whether they would be entitled to benefits.
As the children grew up and became independent, things became a little easier. However, three years ago, Kiran was told his wife would need 24 hour care, and he stopped working to be able to look after her. He found the change difficult. With the two of them at home all day he says it is easy to begin arguing and although he does his best to avoid it, they do have some clashes, in particular when he needs to keep reminding her of doctor's or hospital appointments. He always accompanies her to these appointments. He feels that he is listened to by the psychiatrist, but less so by the other doctors. He is concerned, however, that his wife can be confused so he feels he needs to be there. Kiran says it is essential that doctors allow more time so they can fully take on board what patients and carers are saying. 15 minute appointments every three months, often with someone they have not met before, is not really good enough.
Kiran doesn't really know what caused his wife's depression. She did have some very difficult experiences early in life, but she doesn't talk about them, and the consultant hasn't found any particular cause.
Kiran helps Hema with other health issues too. She has developed a bladder problem and her pelvis is weak. When she wakes up during the night she can't get up and she needs help to be cleaned and showered when she gets soiled.
Both epilepsy and depression are illnesses that people don't know how to deal with. They stay away, Kiran says, and this feels hurtful. Still, he tries to take his wife to social activities. Due to her health, he needs to be available should she need him, so even when she is at a woman's group or support centre he either waits by the phone or outside in the car. Even if religion is not really something Kiran seeks as a source of support, he takes his wife to Bhajans (event where holy songs are sung) as she is more religious.
The 24 hour caring responsibilities means Kiran doesn't have a social life of his own. The caring role leads to a lot of tension, and, he says, this tension will probably be with him a long as he is a carer. He says as a Hindu he has a responsibility to look after his wife. He has to forget about the external world, not expect any help but to focus on the family and how the home is functioning. Had it not been for the support of his children, he says, he doesn't know how he would have coped. He thinks the Government does provide some help, but says you need to go and get it yourself, nobody will do that for you.
Benefits affect carer allowance which makes it hard for carers (recording in Gujarati).
What kind of expenses?
To take them out there are expenses aren't there? With some of them like my Mrs, if you leave her in the house she is got to get depressed. I have to take her out.
Spending more time at home means Kiran can care better for his wife (recording in Gujarati).
In this experience, through your life, have you lost or gained opportunities?
I have not lost opportunities it is the way it is.
Some people who have the responsibility for caring say we gained opportunities in different ways to others, how do you feel? Do you see it as an opportunity or loss?
Not an opportunity lost but a gain.
In what way?
Because I have come to know a lot more about the workings of my own home (sansar) since I am at home. Before I was at work for eight hours and at weekends going out, did not know what was going on at home. If we live at home continuously so I have had the opportunity how to live with your wife, how to take care of her, what to do, so now I have come to know. If someone like carers were taking care of her, and I would have worked, then she would not have improved.
Kiran says things are easier now the children are grown up and he has learnt to live with his...
Simple, steady. There were difficulties but in everyone lives these come, that happens. It was nothing to worry about. When Mrs illness became worse and came out. If it was a medical illness then people can talk about it, but here it is mixed with medical so the difficulties got worse. But then as things happened, solutions then came, children were small and now they are bigger so the responsibilities started to lessen so now when I look back. I feel I am happier than before. Happier in the sense that I do not have to worry about money just to look after my Mrs' health. I now know what her mood is and what she will do and if she does not have money with her she will become unhappy. If we give her money then she becomes happy. It does not matter if she spends it.
Kiran's daughter came home regularly while at university to help care for his wife (recording in...
For the family?
For the family, for the children. My daughter was older, but if the children are in secondary and primary school, it is very stressful for them. I was at work, my children were at school and had to come home and have to do things.
What other ways did they have difficulties, your family?
In terms of difficulties; eating and drinking, because when they come from school they needed to eat. When my Mrs health was bad, there would be no food made. Her mind was such that she could not do any work only sleep. So when the children came home, their clothes were not organised to go to school. Because of depression from the beginning we had to do things from an early stage. So there were a lot of problems when they were small. As the children got older, slowly we got to know and things fell into place. But in the beginning there were a lot of problems.
There is government support in this country, but you have to get out and ask for it (recording in...
In this country you get a lot of government support there is no need to suffer about what to do or what will happen. For resources, if we sit at home, nobody is going to come and help you. We have to get out and ask someone, but our people are shy (reluctant) to discuss things openly what is happening in our homes. But it's necessary because only when we talk to someone will we get help without that we will not find a solution.
He thinks fewer changes of doctors, longer consultations and clearer packaging of medicine would...
So you want more time?
Want more time and the same consultant all the time would be good.
The other thing is the medicine that they give, the capsules. In some things, my Mrs has metformin, a diabetes medicine, it comes in a packet and a bottle. If it comes in a packet she will say that this medicine is different. So if the same packaging every time- what has happened is that in their mind is that the medicine has changed. Often her capsules that come, the colour is different so she will say they have given the wrong medicine. So the if the same package came continuously, that would be good too.
When the children were young, Kiran worried about them and about money (recording in Gujarati).
At that time what did you feel?
At that time, I did not think too deeply otherwise, thinking about the house, thinking (worried) about money. At the time I had bought a house, about two years. There was lot of confusion did not know what to do- no solutions, what can I say, felt stressed.
Is it different now?
The children are older now and the wife's illness has been long now so I know what to do and what not to do, so things are falling into place now slowly.
Their neighbour is great company for his wife and has been there for them when crisis hit ...
No. My wife's friend is Chinese she lives next door to us. She is elderly. We got a lot of support from her.
In what way?
She used to come our home everyday, and sit and talk with us. My Mrs is a people's person and she like people a lot. If anyone comes to our home she is happy. She forgets to argue and forgets her illness and she gets entertained by people. She loves to feed and give refreshments to people. She [the neighbour] used to come home everyday and sit with her. My Mrs has a habit of drinking a lot of tea, in a day she will drink at least 20-30 cups of tea. When the Chinese woman came she got my Mrs to stop drinking tea. She got her to drink hot water. Once before, when before I stopped working, the Chinese woman came when my Mrs had fallen. She got her spare key and she got the neighbours together and opened the door and she pressed the panic button.
When you got her support, how did you feel?
In my heart I felt there is someone nearby and felt if something happened there is nothing to worry about or if I wanted to go out then I will get support. If I tell her that I am going out, she will phone or will come into the home, sit with her or take her out for a walk for a bit.
So did you get some relief from that?
Yes, some relief, that someone is nearby, that not alone.
Kiran help his wife to take part in activities (recording in Gujarati).
Kiran's social life and his relationship to his wife has changed after she got depression ...
I do not have a life, no social life of my own. I bring her to the centre at the moment. I cannot leave her at a daycentre on her own because they will not accept her. I can only leave her at home if there is someone with her. I do not have a social life, it's a 24 hour job. I have come now but my son is at home and will go to work at 1.30 pm then its alright, but if he had gone to work then I would have had to bring her with me.
No, I cannot see anything good for me at all but I cannot say it in front of her. I know it inside. My children know it that dad does not have a life. My children last week, took me to see Liverpool play a match. I had to keep my Mrs at my brother's for one night. They say to me daddy get out, have a holiday, go and do this and that they say, but I do not feel like doing anything.
If I go and if something happens to her, then I will have to do the running around. Its better then to keep things as they are instead of having to run around if I keep her at someone's else house. If something happens to her health it will be me doing the running around. So from inside I do not feel like going.
In that I had never really sat at home, as a man. And sitting at home, not able to do much in the house. Watching T.V and sitting all day at home talking-the quarrels started to increase between two people. She was in depression and I did not know the reason that she was the way she is because of depression. I used to feel she is not working in the home and she wants (needs) to go out. And having left work, it takes time to settle things financially and so we rowed much during this time.
Kiran did not know about depression and didn't know where to look for help other than medicine ...
Where did you hope to get help from?
We did not know, we did not have hope that we will get help not heard anything about depression. Not heard anything about depression or epileptic not heard anything. No help and we had not heard about this at all. All we did was go to the doctor and doctor writes us prescription and we come back home and back again. That's all.
So after these specialists came and we were sent to them and brain scans were done. They told us that these epileptic fits are happening due to depression. Then they sent us to a psychologist and then we got to know a lot more. Five years later we got to know that this is due to depression.
He tries to avoid arguments by talking to his wife in a calm, gentle way (recording in Gujarati).
My typical day if we sit the two of us at home, then both of us will argue about something or another. There is nothing worth arguing about, it's nothing in it. It's usually about eating. She has diabetes but will not like to eat. Instead of getting up at 6 am, today she got up at 5.30 in the morning and she kept working and at 9 am she had an appointment for her diabetes. She did not worry about the time but starting arguing. To get my Mrs out of the house there are arguments and to get her back into the house there are arguments. If someone came and sat in the house then she does not worry.
So how do you have to help?
I have to keep reminding and nag her. If I keep doing the nagging then she gets depressed, she starts crying and her mind does not work. I have to say gently that, 'I am not telling you off but I am telling you about the time'. I tell her, 'Look at the time. We can come back and do the housework when we get back. I do not want you doing the work. We can do the housework when we get back'. When I say that she says no you do not need to do the work I have to do the work. If we do not go out of the house then its sayonara [everything is ok].
Non-technical language and information in writing can make it easier to understand (recording in...
If they explained to you would that be better for you?
Then it would be good, good. What it is about whatever, interview dates or appointment. If you can talk to that person, if they give us a letter and we can show that letter then it is better. If it's not in writing and we there will be some words we don't understand. So we get confused at those times.
If you had the chance or the opportunity to change things to improve them, how would you do it? Can you explain to me again?
I would like it, I do not want an interpreter, but the conversation that takes place there, if it was in writing and you can get it, then we can keep it and talk to somebody about it. If someone, asks me, that you went today, diabetes nurse's appointment. She talked to me face to face. It wasn't such a big point that we didn't understand. My Mrs right now has a bladder weakness and she cannot control urine. She wets herself. So they are going to put a pelvis ring inside. Somebody asked me, what is it? So I said they are going put a ring but we do not understand the word pelvis. If they send us a letter on the doctor's report, and if they give to us, then we can keep it on our records and try and understand a bit.