Indira - Interview 08

Age at interview: 65

Brief Outline:

Indira has been caring for her aunt who has Alzheimer's disease for five years. She believes older people deserve to be treated with respect.

Background:

Indira is from India, where she set up and ran a charity for destitute older people. She became a carer when she came to the UK at age 60.

More about me...

Indira is 65 year and from India. She came to London five years ago to care for her aunt, Maria, who is 85 and has Alzheimer's disease. Back in India, Indira ran a charity for destitute older people, but when her cousin contacted her and told her that their aunt had been found unconscious in her flat and that she was now in a psychiatric ward in hospital, Indira agreed to come for four months initially. 

Indira was shocked by the conditions in which her aunt was living, both at the hospital and at home. At the hospital she had been groped by a male patient and Indira didn't think the health professionals dealt with it properly. Indira was also shocked that no one in had intervened as Maria over the years had gradually been reduced to beg for food and to live in abject poverty. Possibly due to her Alzheimer, she had signed papers which gave her bank the Right of Attorney for what she had inherited from her wealthy husband, but which she did not receive.

When she arrived in the UK, Indira didn't know her aunt. Maria had grown up in Ireland where her family had hidden their Indian identify by pretending to be Spanish. As a result Maria never wanted any contact with her Indian relatives. Because of Maria's anti-Indian feelings, Indira has not said that she is her niece despite now having lived with her for five years. 

Indira misses her work and her family back home. She finds her current life hard, but says that she has made a promise to care for Maria and to make sure she has a good and dignified life. Her aunt can sometimes be very angry and difficult to deal with, but what Indira finds hardest is to have to put up with the way in which Mary is treated by the home cares who come in to change and wash her. Indira  finds some of their behaviour rude and disrespectful to her aunt. She has made complaints about some carers, but does not feel her concerns are always taken seriously. 

Indira is member of several charities that provide help to her and her aunt.

When the home carers left their aunt in her own waste, Indira and her cousin believed it was a criminal assault.

The next day there was another Indian girl staying here while I had to go out. Now this girl came correct at 5. The second girl came at 5.25. She did not reply to this girl when she said hello. They came at 5.25 and by 6, 5.40, that is just 10 to 15 minutes, they were out of the door. They didn't talk, they didn't say 'we are leaving', nothing. Now, this girl is new to the place. She was doing me a favour by sitting with my aunt. She just, -and recorded everything and went. I so happened to come at, -they left at 5.40. I so happened to come at, I'm sorry, 6, yeah. I came back at five past six and whenever I come back, my first job is to look at my aunt. So I charged into the room and got such a foul smell. So I said 'the lady has done a big job, I can't wait till tomorrow to change her'. My cousin was there to help me, so I said, 'please help me'. So when I pulled out her coverlet to change her, I found a big lump. She has a knee divider put, you know, to separate, -a three pronged sort of gadget- to separate her legs, so they don't stick together because of her paralysis. I found a big lump of, you know, her mess stuck onto one part of, the right side of that leg divider. Another big clump of it on the sheet where my aunt's tie was. Luckily, I had come soon enough or my aunt goes, she's, -her right hand is hyperactive at night, she goes tapping wherever she can, taps her eyes, ears, wherever, her body, everything. She hadn't had the time to tap over there. So I came in the nick of time.

My cousin phoned up the home office and said, 'I want someone to come right away to check what, how the carers have left her.' So the lady said, 'I'll get someone to you'. Somebody did come. Now that man said, 'I'm sorry there's nobody here that I can send'. So my cousin said, 'in that case, I would have to call the police and make an official complaint that this is how my aunt has been abused'. So the moment he said police, he said 'OK, tell me what it is and I'll take the matter up with my seniors tomorrow'. So my cousin explained everything to him and I had to clean the mess, because I didn't have, I don't do photography, I don't have a camera here, but I had to clean that mess, because I needed to do it. But I wrote, -then my cousin wrote a, sent a letter again, saying that 'please investigate this or I will take criminal, I mean, I will take action as criminal assault', because it was nothing less than an assault, because the. You see, she was fully dressed. This is evident that it has been placed there after she was fully dressed. Now how can anybody do such a thing? They don't like me, fine. They need not come to my house, just as I have a right to say, 'don't send so and so'. They have a right to say 'we don't want to go there'. So why come here and expose my aunt?
 

She says home carers need more training.

So my biggest problem is the carers, I feel, must have some sort of training. I feel the carers who come here, they are taught to use the hoist, but they are not taught anything about illnesses, about the minds of old people, how it hurts old people. Even the fact that you're talking over them, can hurt the old people and mentally disturb them. There's no training at all, as far as I can see. Absolutely no training. So my biggest problem in this whole thing is, I have this problem of the carers. And how to put up with it, because I know for them also, it's difficult with my aunt fighting, pushing, shouting and all that, but can't they at least understand this is a helpless lady? So my life is really very tough.

She finds some of the home carers very rude to her aunt.

So we have two carers now, who come, with the hope that while one carer is doing the cleaning, the other carer holds her hands. Now, they never seem to hold her hand and all I can hear is, 'can you put your hands together, stop hitting' and the other carer will say, 'you hit me, I'll hit you back'. Now she is, -lost her mind, but they will go on and on about it and it's sad, because my aunt gets very worked up and with that, I get so worked up because -what I don't understand is, that they know this is a helpless lady. Because the next minute, she will say, 'thank you darling'. Now, anyone can see she's lost her mind. Now, one instance of the crudeness of the people who come to her, it is something I don't even use the word 'you bitch' or 'you cow', because to me it's not ladylike at all. 'But the other day, -about, -say about a month back, this Morning Carer, who always comes and always, -she's good at her work, but she's very rude to my aunt. She said, -my aunt asked her 'what are you doing'? She said, 'oh I'm cleaning the shit off your bum'. Now that was so rude to me and my aunt said, 'but who looks at my bum'? But what I meant was, I'm just seeing this meaning that the crudeness that comes from the people is something so difficult to put up with, because these are hale and hearty. They have their minds, they have the blessing of their good health and yet they talk to my aunt like that. That is something which is so, so difficult.

She is sad she could not be with family members in India when they were dying.

I've had two deaths in the family in India. Last year in November I lost my sister, then about, on 19th of May, I lost my sister-in-law. So the fact that I can never see these two people again has made me very, -I do feel very depressed when I think of all that. That is when I'm thinking of that. I do feel very depressed that I could never go. My sister was on dialysis, was a very high diabetic, she got it after I came here, the dialysis and I do realise that I couldn't leave her to go to see my sister. And that is heavy on my conscience. That, you know, once a person dies, it's all over. But I know it would have meant the world to her if I had gone at that time. But I didn't. My sister-in-law had bone cancer, and she was very ill. I used to, every Friday, is an auspicious, like you have, the Christians have the Sabbath, Friday is the Sabbath for Muslims. So every Friday I rang her. She was very happy. She would say, 'When are you coming? When are you coming?' And I would talk to her and say, 'Don't you worry, one day I'll just be there in front of you', and I would just turn it the other way, but it gave me great consolation to hear her voice. And then, on the Monday night she took ill, and within three days, she was dead. But that is life, I realised, but I'm sad about all this, but there's nothing I can do.

She says professional home carers make remarks because she is Asian and Muslim.

I have felt it that they do have some sort of dislike for Asians, and it has come through to me. Not with the whites, but with the coloured carers, I'm talking of the African or the Jamaican or whatever, Caribbean. They do have that in you, that they don't like India, they don't like Asians, because one carer, you know, when the war was going on, and she'd say, 'oh that bloody Saddam' and 'all Muslims are'. Now everyone knows my surname is [name], so they know that I've got something to do with the Muslim, you know, the name is Muslim. So they would make it, 'because of these damn Muslims, the world is suffering today'. They would make it a point to say that. So then I stopped putting on the television while they were there, because I said, you know, what they say is their business, but I don't want to be a party to it of saying those bloody Muslims. It's none of my business. If they are Muslims, they are Muslims, that's it. So, you know, I have felt it they don't like it. They don't like 1), that I'm Asian, 2) that I have a Muslim surname, so I've learnt to stand where I am. I don't bow down to any of them. That's it, but it's not easy, because you're facing it day in and day out and it has gone on for the last four years.

Indira and her cousin decided to stick by their aunt when others gave up.

So the next day, we had a meeting at the hospital, where the bank and one of her sisters came. The sister insisted that she is mentally unfit to live on her own and no way she should be taken home. But my cousin said, 'No, I will not leave her, this is not the place for her. She will come home'. And then they fought for almost two hours, while I just sat there taking notes. It was the Bank Manager, her sister and the doctor at the hospital against my cousin on his own. He said, 'In no way I will leave her. She is my family and even if I see a stray dog on the road, I will protect that dog, because that's the way I am. And I will not go home without her'. And they fought and fought. I could not believe that her own sister would fight for her not to go home. Not even give her a second chance to find life in a better way. But anyway, at the end of it, when they knew that this man would not give up, they said, 'OK', the doctor said, 'OK, take her home, but I can guarantee, I can assure you that she will not live for more than three months. And within the next three days, if you bring her back, I can also assure you that there will be no bed for her'. So with all this and my own, I was determined at that moment I said, 'Come what may, I will not abandon her'. I came to know she is my aunt and I said, 'Whether she's my aunt or not, she is an old lady. She is a fellow human being, there's no way I will leave her. I will fight to the end. I will fight with her' and we brought her home.

She is happy with the sitting service and grateful that the voluntary organisation can send the same person each time.

Well Crossroads is sending her every week and I do think they are very good so I've become a member of Crossroads now and we simply, -they sent a sponsorship form, they are going to have a walk I think. I don't know if it was this month or next month, I can't go, but I did send a donation. So I do my best, because all said and done, they are trying to help me and if we don't reciprocate in some manner, where would they stand? I do believe in that and I am grateful to them and I do say a thank you to Crossroads, because they have helped me. And I have insisted, you know, in the past I would have every time somebody new coming in, but she I have seen her, [name] is very good with my aunt and my aunt likes her. And when she is here, she is very conscientious. She doesn't stop at anything. She makes sure that my aunt has her full quota of everything, which some of the Crossroads personnel wouldn't do. So I've just made it clear that I must have her and only her. I know it's selfish, but to me, it's my aunt's wellbeing. So they have been good enough to send her to me, for my aunt. So I am grateful to them and the Alzheimer's charity - they are of a great help to me and I am grateful for all that, the little blessings in my life. So that's OK.
 

She says you need to look after yourself first to look after others.

Yeah, do you go to support group meetings and things like that?

I do go. I do go, because I do feel it's necessary, because I've understood that it is important I keep my mind and my wellbeing is also important. But I will not make it absolute, because absolute is her. But I do understand that if I want to be doing a good job, I must first see to myself. And I do see to myself. Once she's asleep at night, I do go for a movie now and then, a Hindi movie, because I'm so homesick, and I do enjoy seeing scenes of India and all that, hearing my own Hindi language spoken. So all that, you do find, -you must look after yourself. I think that's another message to the carers, look after yourselves, because your wellbeing is vital to your job. Without your wellbeing, where is you and where is the person you are caring for, so that is there.

Look after yourself, do your best and don't give up even when you feel down.

The advice is, I can't say about, do the best you can, meaning, because I do know the advice that I get when I joined the different courses is, 'you come first'. Now my advice is, you come first, yes, but don't let any situation get you down. Be strong. Firstly, think about it within you that are you, -you have accepted the role as a carer, so go for it. Don't, you know, don't just take a back step and say, 'no, this is too much for me'. If you have accepted it, you must. It might be tough, look out for where you can get help, but don't give up on it. Because if you give up, all is lost. And the whole thing is, you don't want, -not a question of winning a battle, but you don't want to lose the cause, why you're caring. Why do you care for the wellbeing of that person? It could be your husband or wife or anything, that's what it is the cause for it. So don't give up on that, because -keep yourself strong for that. And always think that the other person is in such a bad way that she, he or she needs you. So look at it that way, that you having the strength and the mind, you know, go for it. It's silly, but, -you know, because there are times when you do go down. You do feel, for instance, the last, -with this incident of them doing this on my aunt's bed, I cried till late in the night, for the simple reason that I couldn't believe they could do it. That any human could do it to my aunt. I really cried that night. I cried because, not that they, you know, hated me or anything. It couldn't matter, but could they have really left my aunt like that? I could not believe that somebody would do that to a helpless old lady. So you get into these terrible situations where you feel desperate, because what else can you do?