Pooja - Interview 23

Age at interview: 52

Brief Outline:

Pooja has cared for her husband for 12 years. He suffers from depression and from other health issues and is very dependent on her.

Background:

Pooja and her husband live together with their son and his family. She became a carer at age 40. Ethnic background: Indian.

More about me...

Pooja lives with her husband and their son, his wife and family in the north of England. She and her husband lived a happy life until he suffered a massive heart attack about twelve years ago when he was in his early 40s. Pooja says there was a chain reaction of events that impacted on his health after that. He suffered from memory loss and confusion, which lead to fall and a back injury. Eventually he was diagnosed with acute depression.

Pooja has cared for her husband since then. From being a provider for the family, he is now unable to work, and he is completely dependent on his wife who takes all the routine decisions in the home. He is anxious in social situation and she has to be with him all the time. This leads to tension and they  sometimes argue as a result.

It is difficult, Pooja says, for people without first hand experience to understand how it is to live with someone with mental heath problems and they don't receive much support other than from their children. People keep their distance, she says.

One of the hardest things has been the financial difficulties, and there was no information available about what they were entitled to. Things became a little easier as their son decided not to go to university and instead started to work to help his parents financially. Pooja says living with him, his wife and their baby granddaughter is good source of support.

Pooja says she has become a stronger person in many way as a result of her experiences. She thinks, however, that her own depression that she has been suffering from for some time, is a result of the hard work and emotional strain of looking after her husband. She is taking anti-depressants and she says they are helping. She also suffers from arthritis, asthma and diabetes as well as being anemic, and she is now receiving Incapacity Benefit herself.

Pooja and her husband benefit from taking part in activities at local day centres, and she says her advice to other carers is to find out about such services and use them. She hopes more centres and activities will be available for her and her husband.

Pooja's husband used to be the provider but now follows her around 'like a child'.

I told them that at times, when at home, I got agitated when he kept on following me like a child. If I would go upstairs, he would follow me upstairs, if I come downstairs, he would come downstairs. 

Just like a child. 

Yes, if I would go to garden, he would follow me in the garden, just like a child. I would think and compare that there was a time when he was used to be a supervisor over five to six workers at his job place and now he was jobless. 

Did he stop working? 

He has had no job for the last 12 to 13 years. That has caused us lot of problems. Then he started going for counselling to learn bit by bit. I had to accompany him all the time. The specialist sent him to the centre and asked me to join a carer group'

He used to look after us and now we look after him.

Pooja used to rely on her husband, but now the roles have reversed.

What impact your husband's illness had on your conjugal relationships?

A lot, I do not feel it that much but sometimes I feel angry when he repeats what he is saying just like a child. Later on I would realise and feel sorry about it but it does happen. 

You were used to rely on him and now he is relying upon you. 

It is opposite. 

Just like children. 

I feel that a husband is the leader of the house and mostly would suggest going out and seeing some family but I have to think about all such things and ask him to do these things and it is bit strange that he would not refuse. 

Because earlier he was the decision maker?

And now I have to take all such routine decisions. 

God determines good and bad times, but our prayers can be answered in times of need.

Have you got any help from the religion? 

No, we do not have much interest with religion. 

Like people say that if you worship more, it helps you. 

That's true, you can not say that whether the Lord has helped you through prayer or medicine but you got to believe that the Lord has the power. We do believe in that. I believe that if we got good or bad times that all is our destiny from the Lord. 

But you have not given more attention to religious activities to get help to get a real difference? 

We do believe that. We do believe that if something good has occurred to us that is because of the Lord. 

From religious point of view, have you ever thought about your bad times, why it happened to you? 

My husband used to say that whatever has happened to him was part of his destiny and he felt that he was better off when compared to death by heart failure. The doctors pulled me out when his heart stopped beating and his head became motionless in my hands. I had started crying calling the name of whom we believed in. After the shocks, his heart started beating again. So I felt that my prayer was answered and he survived. 

He was saved? 

Yeah, maybe it was destined to be like that. May-be he had to be around for the marriage of his daughters or maybe it was for me as well. 

And how do you feel when you think on such lines? 

I feel positive and realise that someone is looking after us and relax. 

Your burden is lightened with this feeling? 

Yes.

Pooja's son decided to get a job instead of studying so he could help his parents.

I think when we went to see the psychiatrist he told us point blank that my husband was not suitable for any job. 

He told us that about eight to nine years ago. He said that the way my husband was losing memory he might get up one day asking who all the family members were, he said this straight on our face. This had a very bad impact on my son. He was with us at the time of appointment. After finishing college he did not proceed for higher education. He said that he would look after his dad. He felt extremely worried by the fact that his dad could lose his memory completely. 

What was his age at that time? 

I believe it would be around 15 to 16 years; it was after three to four years of the heart attack. 

What he was doing at that meeting, was he there to translate the discussion for his dad? 

The doctor called us to share with us the results of various test done earlier. Our son had a day off from the college. We never realised that he would be impacted by that meeting. We just asked him to come along so he accompanied. I felt sorry later on for giving him that shock. But after the meeting, he told his sister and myself that he was not proceeding for higher education rather he would start making a job to help the family. I initially forced him to apply for admission at the university. But he told his sister to tell me about his decision about quitting studies in favour of a job. After that I did not force him. He had learnt computer sciences at the college so he joined as computer engineer somewhere.

Pooja gets great support from her son who lives with them, but less from her married daughters.

They are helpful but after the girls get married their focus is their own family. Our son helps us financially as well. He sent us to visit India last year. And he paid for the travel and other spending. You cannot get all such expenses out of the benefits. So he has helped us quite a lot. 

From your daughters, is it you who would not like to accept any help or is it their families who would not let them help you? 

They are busy with their families. They have children, they have homes and they have mortgages to pay, so I do not feel asking for help or taking anything from them. 

Have they ever offered you with help? 

Yes sometimes they ask if we would need anything but we have not taken anything from them. 

Why you do not take help from them? What is your real feeling? 

I just feel that they have their own families to look after so we should not put them in trouble. The hard time that I have been through, I do not wish my girls to suffer anything similar to that. 

And about your son, do you not feel the same way? 

He is with us and I do not feel anything wrong about seeking his help. 

Is he living with you? 

Yes, he lives with us.

She says 'Punjabi people don't know what depression is' so they don't want to tell the community...

How does the local community behave towards him? 

OK, they just do not believe that he is suffering from any disability. If, for instance, he would say to someone that I can not remember something, they reply the same to him, treating it like a joke or something natural. They do not take it like a problem or disabled man. 

Have you told people that he is suffering from depression? 

No-body would listen. Actually I think our Punjabi do not know what depression is. Only those would know about it who has suffered from it. 

Do you know of any one in the local Punjabi community suffering from depression? 

I know one or two cases. Those who have been through such things know what we are talking about. The rest would not understand a bit.

Much of their family 'shun away', and Pooja feels supported only by her mother.

Who else was around other than his brother? 

One sister but she was of no help. 

Was she living in this city as well? 

Yes, but no-one wanted to help. Even the friends shun away. They thought we might ask for money because my husband had become jobless. Things like that. They felt that our family would be an extra burden with young children so every one kept distance. 

And what about your family? 

I have got my mother and two sisters. My mother helped us little bit with our spending but my sisters were married in Birmingham and had their own families to look after. My mother helped us.
 

The lack of suitable transport services makes it hard for her husband to attend community centres.

There are institutions like this centre from where you can get some help. Do you go any where else other than this centre? 

There was another centre, like a day centre and it was maintained by Punjabi people and I wanted to go there for a change but when we applied to go there they said that you can come but we can not give any transport service to you. 

No transport service? 

They have a transport service but they did not give it to us. He does not go alone. It has to be two people. Like in this centre, it's me who would come and go with him all the time. At times they send the transport but it can not wait longer for us and he would not go alone. In the end he just refused to go like that. There was also a concern from me that if I would have to come and drop him at the centre and than pick him back it would mean losing double time.

She says information must be made available to make sure people get help quicker than they did.

It took us a long while to know about all such things. 

How could you have known about such services earlier? 

Through our doctors or hospital because that is where we went in the first place. That is where we were told about the benefits. If information about such centres would have been available with our doctor or at the hospital than we could have contacted this centre at an earlier time. 

Right. 

Or it could have been made available at temples or community centres. 

Some information must be with community centres. 

Yes there is very little information available with the community centres. 

What other institutions do you think should be set up to help with the caring? 

There are plenty of institutions already available; all that matters is the amount of finances with each individual. If someone is living on benefits how much one can afford, I mean spend from one's own pocket. They provide pick and drop and take them away for day out but it should have been more frequent.

Looking back at the last 12 years, is there anything that you would like to emphasise most, something that you have wanted to say during all this period of 12 years? 

Yes, I would like to say that the bad time I have been through become longer because of lack of information. This lack of information must be tackled so that other people might not suffer that long, they might find a way out much quickly.