A-Z

Patience

Age at interview: 44
Brief Outline: Patience’s husband already had MS when she met him. He proposed to her on their first meeting and they married a couple of years later. Although he is now profoundly disabled, Patience is determined to create an effective care partnership with social services so that he can remain at home.
Background: Patience, age 44, is a teaching assistant in a nursery school. She is African/Ghanaian, married, with no children.

More about me...

Patience’s husband already had MS when he proposed to her, on their first meeting in 1997. She was working in a unit where he was having respite care. She moved to live with him, to ‘settle him’, without committing herself at first to a long-term relationship. After a couple of years she decided that she did want to marry him, although she did not realise how difficult it would become to look after him. Initially, they lived with his parents but eventually moved into a house purchased for them by a Veteran’s organisation. Patience recalls that her husband’s family could not cope with his MS, with a young man in a wheelchair, and as she has no family in the UK she was left alone to care for her husband’s increasing needs. 

In 2005 a pressure sore became the outward sign of Patience needing more help. The solution proposed was for her husband to go into a nursing home. He lived there for two years but the occurrence of two further pressure sores, and other signs of what Patience calls ‘negligence’ made her determined to care for him at home. A long battle followed with the local authority, social and health services, mediated by her MP and an independent advocate. Patience won this battle and her strong message to others is never to give up in pursuing what you know to be right for the person you love who is affected by MS. 

Patience has worked hard to get health and social care professionals to work with her in caring for her husband. She thinks the determination and drive which have turned her from a quiet, shy person into somebody who is prepared to stand up and argue come from her upbringing and her religious faith. She no longer fears anything and takes each day as it comes. 

Patience sees herself as a person who makes a choice to be positive, even when things are dark. Despite all the challenges she has faced, and continues to face, she declares that, ‘I love my life.’ And despite her commitment to speak up on behalf of other carers, she sees herself first of all not as a ‘carer’ but as a wife who loves her husband and who wants him to have the best life that he can have. To her, he is a normal person, not to be identified with, and stigmatised for, his disabilities.
 

Patience was angry that her husband’s parents weren’t helping, until she realised that they couldn’t cope either. She thinks they needed to talk to each other more.

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Patience was angry that her husband’s parents weren’t helping, until she realised that they couldn’t cope either. She thinks they needed to talk to each other more.

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So when we moved back to his parents’ home I wanted to say, “Oh, it’s too much. I can’t cope,” and things like that because I expected the family to help but they couldn’t cope. It took me a long time to realise that they were not coping because I was very angry with them that why can’t they help me with their own son? Even now, I’m sorry, you know, sad we lost my mother-in-law four years. My husband came home in August 2007. My father-in-law, we see him almost every day and he said to me, “Patience, we couldn’t cope either.” There was lack of communication, because when people are feeling all kinds of things in their head they try not to talk. And I was the same, really, and so we need to talk more.
 

Patience went back to work after 10 years of looking after her husband full-time. She enjoys giving her time and skills to nurture others as well as her husband.

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Patience went back to work after 10 years of looking after her husband full-time. She enjoys giving her time and skills to nurture others as well as her husband.

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I love working so I’ve gone back to work and I get the benefits. I’ve been working with children before I met my husband. I used to work as a nanny. I work in a nursery school but when I met my husband II stayed home, for nearly ten years because I wanted to get him better. And I thought, “I could change my job to do disabilities and children”. I get, the benefit of it is enormous. So don’t think that oh, your time is just with your loved ones and this and that. You can give it to others as well because those people, they are going to appreciate it. I don’t say your loved one does not appreciate it but when you are with them all the time, we look at it in that way but when you go outside your walls and give it to somebody, I think the smile on their face would make you think that, oh, you feel you need to do it every time. So don’t give up. Just hang in there and it will get better. Then, whatever the reason is, just find your weaknesses and strengths and have a balance.
 

Patience felt strongly that, because health professionals recommended that her husband go into a nursing home, she should not have to pay the costs.

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Patience felt strongly that, because health professionals recommended that her husband go into a nursing home, she should not have to pay the costs.

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That week I got a letter from a solicitor, it was social services’ solicitor. They said that we owed the nursing home over eight thousand pounds. .I just left the letter but after speaking to a couple of people they said, “Go to Citizen’s Advice Bureau and seek advice.” I went to Citizen’s Advice Bureau but they did not want to know [laughs]. So what did I do? I spoke to several people, who gave me some solicitors to go to, and I went to them. They didn’t want to take the case on because the letter was from the solicitor from social services. So I took the courage and I phoned the solicitor and I said to her, “You don’t know what you are dealing with but if I were you, I would just drop this case.” And she thought I was joking so I got my MP involved.

While my husband was in home, we had to call many meetings with the head of the local authority, and with the MP about the payment of my husband’s stay in the nursing home. So I just said to them, “I didn’t make that choice for my husband to go to the nursing home. I did ask for help. All my concern was for my husband but they were supposed to put twenty four hour nursing care at home for my husband and nothing was mentioned.” So I said, “I didn’t put my husband in a home. You people decided, therefore, pay for it.” And in the end, you know, even my MP got a bit scared because the local authority, the managing director, they came here. They asked me to come to a meeting at the local authority. I said, “I’m not going. I haven’t got anybody to care for my husband and my husband needs to be at the meeting.” So they came to my house and then they said, “Well, if anything happened and you go to court with the local authority, and we lost the case, they’re going to take my husband’s war pension to pay for it.” And I said, “I’d rather to court and I’d rather go to jail with my husband to prove a point.”

So my local MP, said, “Oh, Patience, I don’t think this is wise or advisable.” And I said, “Well, I am going to do that because, you know, everything concerning this situation is their fault and I want them to admit it but it seems that nobody wants to and I refused to pay the money.” I had to write a lot of events that happened at the nursing home, which was why I refused to pay the money because my husband’s care at the nursing home wasn’t good. While he was there he had an MRSA. I wasn’t told. A lot of things, his eye drops were put on the radiator, on top of the radiator, whereby it needed to go in the fridge. In the nursing home he got MRSA and they said they can’t have and that they did not put his eye drops into the fridge. So, I think it was negligence by the care staff.
 

Patience’s husband has played a major part in her life and they have grown close together, even though ‘everything is not roses, happy every day.’ She thought about leaving at one point but is glad she didn’t.

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Patience’s husband has played a major part in her life and they have grown close together, even though ‘everything is not roses, happy every day.’ She thought about leaving at one point but is glad she didn’t.

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I live in a place where we are family orientated people. I could have given up. I did actually, after seven, six years, I thought, when I met my husband in September, I said, first time I had met my husband September ninety seven, I said, “I’ve had enough of this country. I want to go home.” And he said, ‘Oh, don’t go, you know.” So he is a very confident man really. He is, you know. He boosted me out of it because I wasn’t, I couldn’t even sit here and talk to you. I was a very, very shy person. If you will believe it, no! You wouldn’t, you see. 

So my husband has played a major part in my life, despite the fact that he’s disabled, wheelchair bound, can’t even hold a cup. I have to feed him. I have to give him bread, everything. He’s been a major part in my life as much as, I’ve got my faith as well. So we have grown together to be close because I said to him like, “There’s so many things you can’t do in this life.” I’m able and I can’t do a lot. I can’t even ride a bicycle because I had a fall when I was little, when I was running. So the fear of that couldn’t make me and we tried a few years ago, when he was, you know, wheeling him, he was a bit not like now. I got his brother’s bike. We went to the park. He said, “Do this, do that.” I said, “I couldn’t do that.” 

So I gave in but I can swim now and guess who? My husband taught me how to swim because I used to go swimming with him. He used to be a swimmer. He swam for the local town and the military service. I used to take him swimming on my own. He said, “Do this, do that.” I was petrified of water. I’ve got a fear of that. So I’ve overcome that, you see. So, you know, you can do anything and, you know, I think it’s my culture as well. My culture, my faith and my husband, I love dearly.

That is life, really. I knew what I was taking on but not fully. What do I do? Do I say I’m walking away? No. Yes, some people would do because we’re all different and I do respect everyone. It’s their personal choice. It’s their decision. 

They know why but to me, I want to hang in here. And I’m happy here, so why do I leave? Why would I go, you know? Everything is not roses, happy, happy every day. Sometimes I’m tired. He comes over and I just, “Oh, be quiet. I just want.” You know, but all of a sudden we just pick it up again, you know, and then this morning he was going on and on and I said, “Please, you know. You’ve woken up too early and things.” He say, “Oh, I don’t mean to.” And then we talk about it and then he goes back to sleep, you know. So, I’m sitting here. People shouldn’t think that everything is good. Everything is okay. I have to make myself make it okay. Sometimes I couldn’t. I can’t but I just try and sometimes I shout and scream, you know. 

I’ve spoken about a lot of good things but I need to let people know that it’s not always good. There’s up and downs and you have to know where the balance should be, you see. So they shouldn’t think that, “Oh, this girl, she’s come a long way.” You know, if I tell you everything is good, you might be doubting yourself. “Now how come?” If you see my husband now and say, “How come she’s so easy?” But you need to put a smile on your face and when you put a smile on your face, those challenges, you can get over it. Sometimes you cannot.. You know, you couldn’t or, you know, but then, hey, scream, shout, let your emotions out. It’s part of the healing process. 
 

Patience got into a complex dispute over care and funding for her husband when, after nearly two years in a nursing home, she decided to care for him at home.

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Patience got into a complex dispute over care and funding for her husband when, after nearly two years in a nursing home, she decided to care for him at home.

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Then in 2005 he got a bed sore, which meant he had to stay in bed. I called the professional people in, which is the district nurses, and they said the best thing for him was to go into a nursing home. Well, the first time they treated the pressure sore. It started with him being in bed every six hours, I turned him every six hours and the sore was getting worse and they said to turn him every four hours and then every two hours. I was turning him on my own and then it became every hour, turning on my own. But then, I couldn’t cope so I said to them that I needed more help but the help they gave me had to come from social services, district nurses and the whole professional people package. They said, “Well, he needs to go in a nursing home.” We had a meeting on Monday and by Friday everything was ready. 

I did not want to take him there but because I was tired caring for him, I agreed with the professionals and what happened was I took him to the nursing home. This is in 2005, October and every day I went to visit him because he was wasting away. He had given up. Then in 2006 I had a letter from the nursing home about the health care which they said had moved onto social care. So, I asked who is going to pay for it and they said, well, you need to pay for his care. And I said, “No, I’m not paying for it.” So he had an assessment with social services. At that time, he went in to the nursing home with one sore and, at the time, they moved the package from health care to social care, he had three sores. So I said, “No.” So they did a financial assessment, which is means tested, and they said, well, we have to pay about two hundred and something pounds a week and I said, they must be joking. I will bring my husband home whatever it costs. I’d rather pay somebody that kind of money than paying the nursing home to kill my husband slowly.

So, I had to go back to social services and then nothing was done for six months. Then in 2007 I went to my MP and I explained the situation. He got hold of the local authorities and what they said to him was my husband had got complex issues but it takes a while to sort that out. It took almost a year before I could bring him home, which was in 2007, August. He went in 2005,October, and got back in 2007, August.

At this point, all the professional people wanted me to leave my husband in the nursing home because I said I want my husband home, everybody didn’t want to know. I even got a call from my GP because I was having a lot of issues with the district nurses because, my husband needed help with bowel management. They had to do the bowel management. He had a bedsore. I asked, “Who’s going to dress it?” and I thought they didn’t want to do the bowel management. The district nurses said, “No, it’s best for him to stay in the nursing home.” As he was wasting away, I went to my GP. I said, “Look, this is the situation. Please, I need your help.” He said he would speak to the district nurses and then I got a call the next day asking to come in and see him. He said, “Well.” He agreed what the district nurses said was right, that it was best for my husband, to stay in the nursing home. And I said to him, “Where there is a will there is a way. I’m bringing my husband home no matter what. I don’t care less.” 
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