John Y

John’s wife was diagnosed with Multiple Sclerosis fifteen years ago when she started experiencing pain in her spine and neck, since then her condition has gradually deteriorated. John carries out the majority of care for her along with working full-time.

Fifteen years ago John’s wife started experiencing pain in her spine and neck. This pain persisted over a long period of time and eventually John persuaded his wife to visit a GP. Health professionals suspected she may have MS or osteoporosis and referred her to the hospital. After further tests it was confirmed that she had MS. Soon after the diagnosis she started using sticks to aid her walking. Since then her condition has gradually deteriorated to the point where she can no longer walk, is often incontinent and has her food cut up for her.

As John’s wife’s condition has worsened they have made certain adaptations to their living arrangements. Before the diagnosis they lived in a maisonette with many stairs, they then moved to a house where only the bedrooms were upstairs. After moving they installed a stair lift and more recently built an extension to accommodate a downstairs bedroom and a walk in shower. John also renovated the bathroom six years ago so it is more suitable for his wife’s needs. John feels annoyed that no government funding was provided to pay for all these adaptations especially after they have both paid taxes and worked.

The majority of caring responsibilities are carried out by John, with the exception of carers who visit during the day while he is at work. John describes how physically and mentally tiring being a carer is; he often feels exhausted and gets frustrated that they cannot lead a live a normal life like everybody else.’ He believes the stress of working fulltime along with caring has affected his health and wellbeing. Occasionally he arranges respite care and goes on holiday alone to rest, however while away he often worries that something might go wrong at home.

Coping with MS has put a strain on their relationship and at times the stress causes them to argue. Their children also find the situation difficult to cope with; John wishes they could help more with care duties, but at the same time wants them to be able to get on with their own lives. Although times are often hard, John is wholly committed to his wife and their relationship and will always be there to provide care and support. John worries about the future and how they will cope as her condition worsens. He feels comforted when meeting others in similar situations because they understand one another and he can learn from their experiences.

John’s children are young adults now and he worries about how he will afford to help them financially if he has to pay for his wifes long term care.

Age at interview 55

Gender Male

I’m worried about my future as I’m getting old, I know I’m going to be on my own also I’m worrying about her as well. if I can’t cope at home she has to go into a home, who is going to pay for that? I’m worried, I hear about people, like old people that they have to go into a care home and they have to pay for it and they end up selling their houses, or whatever property they have, to pay for that, it’s if I have to do that what am I going to help my kids with later on. You see that worries me as well, you see I want to help my children when they get married I want to help out there; if I could help with deposits to buy a house, this is something for them. If we have to sell that to pay for her care in a home therell be nothing left for them and what’s going to happen to me as well, what am I going to do? You know am I going, if I’m in care who’s going to help me, who’s going to care for me? That’s the things I may not talk about it but that’s it, things that are with me all the time. I don’t have, I can talk about things like that with you or somebody who is in a similar situation but I just can’t really go and talk to anybody, even the family, friends or a relative I can’t even, I don’t know just, I’m not a very talkative person anyway by nature. That’s the thing that worries you and stress you thinking about it.

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John worries about how their mother’s MS has affected his children, but he realises why it is difficult for them to cope with the situation and for them to understand what he is going through.

Age at interview 55

Gender Male

And I worry about the children’s future because it has affected them a little bit in a way. Sometimes they don’t want to help and are being rude to their mother. It’s not because they are rude people, it’s because of the situation, they can’t cope with it. I cope with it because I’m more, I’m more, I’ve been through it many years. They’re only just about starting to understand the difficulties of having a disabled parent and what it involves, what the demands of a disabled parent are. And you don’t expect somebody, like I have for instance, my daughter was going to university, to make her do things like that for my wife, shes got her studies to do, I don’t want, personally I don’t want to distract her from her studies. I want her to have a, to concentrate on her studies, finish university and get on with her life. They do help, but not at, at the pace that my wife demands or she is asking. It’s difficult for them to, to comprehend what I’m going through and to understand that it’s very difficult for me. And I don’t expect them to understand, I don’t expect anybody else to understand unless you live with the problem yourself.

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John resented the changes in his life caused by his wifes MS. He just wanted, a normal life, like everybody else.

Age at interview 55

Gender Male

She stopped driving about that time, about five or six years ago, because she already had two crashes because her leg couldn’t move properly so she decided to stop driving. I bought a different car so we could put the wheelchair in the back of the car without having to collapse the whole thing because before I used to have to collapse the chair to put in the boot of the car. And every time we used to go out it, things like that used to create an argument. I was tired, the kids were younger then, they couldn’t help. I resented it because I was, what you had to do every time you go out shopping, visit relatives or go on holidays. Why couldn’t I live a normal life like everybody else? The thing that got me the most is not to be appreciated for what I do, I don’t mind doing it but I want a bit more appreciation and respect for what I do. Anyway it was, you know, very difficult times, very, very difficult.

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John adapted an upstairs bathroom, but then decided to build a downstairs extension for his wife to have her own bedroom and walk-in shower. He resented having to spend his own savings on this work.

Age at interview 55

Gender Male

In the end it was becoming so difficult to move her around the house especially the toilet, you have to lift her off the chair, when she was downstairs, put her on the toilet downstairs there was a tiny toilet. I had to take time, I couldn’t just do it straight away she has to be relaxed certain things like that and then help her off the toilet, clean her, pull her pants up, wash her sometimes. During that time about six or seven years ago I adapted the bathroom upstairs so she can climb or come near the shower, got rid of the bath and put a shower tray, a low shower tray so she can step over it. It became a little bit easier just for a short while, afterwards it was becoming very difficult to lift her from the wheelchair into the shower cubicle so we decided to extend the house downstairs to have her own bedroom and her own walk in shower and I didn’t get any help from the government or the local council because I was earning, I was working I was earning more than £17,000 a year and that doesn’t entitle my wife. And I resented that because I said why do I have to pay for it, I’m not asking for the help my wife is asking for help, we worked all our lives weve never been out of work, we pay our taxes and things like that so I resented having to pay but I had to do it in the end, I had to do it. So with the few savings I had I decided to start building the extension because I’m a builder myself. It took me about three years to finish, not even completely finish because I haven’t got a floor yet.

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John used his savings to pay for adaptations to the house. He feels that his wife should be entitled to financial help in her own right.

Age at interview 55

Gender Male

In the end it was becoming so difficult to move her around the house especially the toilet, you have to lift her off the chair, when she was downstairs, put her on the toilet downstairs there was a tiny toilet. I had to take time, I couldn’t just do it straight away she has to be relaxed certain things like that and then help her off the toilet, clean her, pull her pants up, wash her sometimes. During that time about six or seven years ago I adapted the bathroom upstairs so she can climb or come near the shower, got rid of the bath and put a shower tray, a low shower tray so she can step over it. It became a little bit easier just for a short while, afterwards it was becoming very difficult to lift her from the wheelchair into the shower cubicle so we decided to extend the house downstairs to have her own bedroom and her own walk in shower and I didn’t get any help from the government or the local council because I was earning, I was working I was earning more than £17,000 a year and that doesn’t entitle my wife. And I resented that because I said why do I have to pay for it, I’m not asking for the help my wife is asking for help, we worked all our lives weve never been out of work, we pay our taxes and things like that so I resented having to pay but I had to do it in the end, I had to do it. So with the few savings I had I decided to start building the extension because I’m a builder myself. It took me about three years to finish, not even completely finish because I haven’t got a floor yet.

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