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Multiple Sclerosis: friends & family experiences

Chez

Age at interview: 42
Brief Outline: Chez’s husband was diagnosed with MS in 1986, just a few months before they were married. He was 28 and Chez was 18. Despite all the challenges they have faced, and continue to face, Chez talks very positively about their life together.
Background: Chez, age 42, is a housewife and full-time carer. She is white British, married with two children.

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Chez married her husband at the age of 18 knowing that he had recently been diagnosed with MS. They are still together after 25 years, having lived with many challenges together. Chez says they are ‘soul mates’. When he was diagnosed, they celebrated with relief that his symptoms were due to MS rather than a brain tumour. Chez found out as much as she could about MS, mainly from the MS Society, so that she would know what she was facing. Her husband preferred not to know and lived for some time in what Chez calls ‘denial’ about his condition.

Chez’s whole life is devoted to caring for her husband and she never switches off from MS. Her own health problems mean that recently her husband has had to go into a care home temporarily. He has told Chez that he wants to move back to ‘his roots’, in Wales and currently Chez is working hard to make that happen. She feels, though, that she has to fight constantly with social services to get the care services and financial arrangements that are appropriate to their needs.

Chez has a positive outlook on life with MS, having not known anything else in her adult life. Despite this the cumulative effect of caring for and motivating her husband over many years has led to her becoming depressed over the last few years. Their family life has been affected, too. Their eldest daughter chose to leave the family home at age 14 to live with her boyfriend (Chez is grateful for the support of social services during that period of their life) and rarely visits her father as she finds it difficult to witness the progress of his condition. Their younger daughter became a little withdrawn but does now visit her father weekly, despite being away at university. 

Chez doesn’t plan too far ahead. She says, ‘It’s a lot easier to deal with things if you look on a day to day basis rather than looking too far into the future, because the future can change, and it can change rather dramatically.’ 

Chez’s husband has had MS for 24 years but it has only changed to secondary progressive MS in the last five years and he was able to continue working until very recently.

Chez’s husband has had MS for 24 years but it has only changed to secondary progressive MS in the last five years and he was able to continue working until very recently.

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He has progressed from remit-relapse MS to secondary progressive MS in the last five years. And now he’s had MS, I think its 24 years so far. So, he’s not had a bad innings as far as MS has gone. But it’s been over the last five to seven years that the MS has taken quite a downward turn. In doing that it has caused all sorts of problems with him. He has had to give up work now. That happened about seven months ago.

Chez was more concerned about a brain tumour than MS so the diagnosis was, in some ways, a relief.

Chez was more concerned about a brain tumour than MS so the diagnosis was, in some ways, a relief.

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While he was in hospital he had lots of tests done and he was basically told by the consultant that he either had a brain tumour or he had MS We were told to come back a week later which in that week I found out more about MS and I found out more about brain tumours, because obviously you get to hear something like that and you get very, very worried. He had some more tests done the following week and he, we both went into the office and he was told that he had MS. Out of the two that was the better of the two. We came out of there, we both hugged each other because we were in a relationship at the time but weren’t married. We were due to get married three months later and basically we went out, we bought a bottle of champagne, bought a take away and actually celebrated him having MS rather than a brain tumour. The going out and getting the bottle of champagne and the take away was a sort of release mechanism I think for both of us, just knowing that it wasn’t a death sentence. It was a, a life sentence but it wasn’t a death sentence and that was the happier of the two diagnoses we, we could have had.

Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.

Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.

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I actually went to the MS Society, to find out about the MS. The brain tumour side I actually looked up on the Internet at the time because my husband’s a computer analyst so it helped having the Internet at the time. And basically looked both of them up whereas my husband or my, to be husband at that time didn’t want to know. He was sort of blanking it out. He didn’t want to know anything about what was going on at the time, whereas I’m more of a practical person, I will actually go ahead and I will find out about things. So I knew what to expect within the MS, I knew what to expect if it was a brain tumour. I knew what the life span was with both of them. It gave me just a little bit of hope with both of them and it made it very, very much more easier for me to cope with. [Name] didn’t want to know at the time but I did, and I felt that I had to be the stronger person of, of both of us at the time. And that’s why, why I looked up all the information that I could.

Chez’s husband had MS before she married him. She has always seen herself as his carer as well as his wife.

Chez’s husband had MS before she married him. She has always seen herself as his carer as well as his wife.

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Yes. I have always been my husband’s carer. I will always be my husband’s carer. I may not care for him in the sense of now being the absolute carer for his day to day needs but I care for him in the sense that I give him the emotional support We talk, we, we support each other and I think the caring mode is still there but it’s in a different context. So the care mode will always be there, it’s just changed from the day to day caring side to being the supportive caring side. And that will always continue until he passes on.

Chez has pain in her back and knees from 20 years of physically caring for her husband. She accepts that she is going to need help with that side of things now, but feels that she is letting him down.

Chez has pain in her back and knees from 20 years of physically caring for her husband. She accepts that she is going to need help with that side of things now, but feels that she is letting him down.

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I have a lot of conditions myself medical conditions that have been caused through my husband but not by my husband if you like. Through looking after him on my own for 20-odd years I’ve got a lot of back problems. I have a lot of knee problems caused by lifting him off the ground. And when you’re lifting a dead weight it is very hard And that has caused me an awful lot of pain And now because of that I’m on a lot of medication and I’ve basically been told by my GP that I’ve got to start looking after myself more now rather than looking after [name] or feel as if I’m looking after [name] all the time. It’s very, very hard when you’ve been looking after a person for so long to actually take that backwards step and actually let somebody else look after him. And I’m going to have to do that, I don’t have the option of whether I can or cannot, I am going to have to do that because I’m on drugs like morphine now. So it does make the situation more difficult and realistically I can’t look after him all the time. So it’s come to a stage now where I have to let others in and that is difficult. And it makes me feel that I’m letting him down. Or that, that’s how I feel, is I feel as if I’m letting him down. Do you think he feels that you’re letting him down? No. No. We’ve actually talked about it. He understands that I have to take a backward step He does have short-term memory loss so we do have to talk about it quite often but it is one of those things that he doesn’t have a choice in and I think he’s accepted that now. It took a long time for him to accept that and he knows that if he does come home that he would have 24 hour care because I couldn’t do the turning, I couldn’t do the lifting, I basically can’t do anything for him now. Apart from doing basic things like cooking and making dinner and stuff. But the lifting side and the turning and the showering, those intimate things that I would have done for 20-odd years I cannot do that now. And that is through looking after him.

Chez was about to get married when her husband was diagnosed. They have survived the ‘ups and downs’ by talking about things and because, she says, they are ‘soul mates.’

Chez was about to get married when her husband was diagnosed. They have survived the ‘ups and downs’ by talking about things and because, she says, they are ‘soul mates.’

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I think what has kept me and my partner together is us both talking about MS, talking about the relationship not letting things get us down. If there is something within the relationship that is worrying us we talk about it. If there is something within the MS that we’re not sure on or we want more information on we will go out and we’ll find out about it. I think a lot of the time people that the relations break down is because they don’t talk about the MS. They sort of push it to one side, don’t feel it’s important, don’t feel it’s part of who they are, and basically shove it to one side. Whereas couples who talk about the MS, who talk about the relationship and mix it all together I think brings a new dimension to keeping the relationship alive. Yes, personally we can’t have the same sort of relationship that we used to have sexual-wise you, you can’t have the, the same relationship but we still kiss, we still cuddle, we still have the love that we still had 25 years ago. What we’ve both turned around and said at the same time is that we’re soul mates. It’s the biggest thing that we’ve both said to each other and if you have a strong relationship that both me and my husband have then any, you can do anything. And you can achieve anything. Yes, it’s very hard, yes it takes a lot of work and you’re always working at the relationship, you’re always working against the MS getting any worse. You’re always working against social services, you’re working against all these different people that are always part of the MS, the medics, the paramedics that you have to get in when your partner’s ill. As long as you keep talking and you, you go through every part of it, you will always keep a relationship alive. You stop talking and that’s the end of the relationship. A lot of people have turned around can’t believe that both my partner and I are still together 25 years down the line. I even had an apology off my mother 10 years ago because she didn’t think my relationship would last because I was very young when I got married, I was only 18, and my husband was coming up 28 when he was diagnosed and when he found out he had MS. Now that, for an 18 year old, to take on was a big step for me. And I’ve always known that. But I would never, ever turn the clock back and say, “No, didn’t want to do that”. The relationship has been a strong relationship right from the start and I would do it again.

Chez thinks that depression is more likely to happen in the carer than the person with MS. She has had depression for the last seven years.

Chez thinks that depression is more likely to happen in the carer than the person with MS. She has had depression for the last seven years.

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The depression side of it doesn’t seem to have affected [name] that much. It seems to have affected me more than it has him. I think a lot of that is caused by I’m the person that is having to deal with the day to day things, anything that’s stressful to my partner I can’t talk to him about because I don’t want him to get stressed out about it. It could be money issues, it could be housing issues, it could be absolutely anything. And I can’t talk to him as I would normally do to my partner because I have to think is how is he going to react with that. And one thing that I have noticed with MS and with long term relationships is that you do have to adjust accordingly with your partner and with the, the way that you behave towards your partner My partner has a, a way of going into a rage. I can talk about some things very, very simple, day to day and he will go into a rage about it. I’ve literally got to walk away from him for a couple of minutes and then go back and say, “Well, what was that all about?” That is one thing that has been recent in coming. But the depression side I would say is more on the caring side rather than the, the actual person who has MS. I’ve suffered depression for about seven years now, so I don’t mind admitting it. It’s just one of those things. I think dealing with a person on a day to day basis with MS is very, very hard and you’ve got to have a strong will to be able to cope with it. I’ve seen so many of our friends within our group and outside of our group that have had MS and their relationships have fallen apart. And it can be through depression, it can be through the argumentative part of the relationship where the person who has MS will just blow and basically have an argument about something so simple. It can be as simple as opening a bag of crisps and the person can’t open the bag of crisps as they want to and they get so enraged by it that they just make an argument about something so simple. And when you’re dealing with that on a day to day basis it can become very, very disheartening to the person who is dealing with that person. Being away from my partner has helped a bit and it has caused me to sort of take a step back and look and see the relationship for what it is now. And it has helped me look after myself a little bit more.

Chez tries not to push her children in particular directions when it comes to their relationship with their father, but to let them ‘do their own thing in their own way’.

Chez tries not to push her children in particular directions when it comes to their relationship with their father, but to let them ‘do their own thing in their own way’.

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My eldest daughter left home and went to live with her boyfriend when she was about 14. She also went through a stage of drinking, smoking cannabis and basically being a wild child. She came out of that. We got the help that we needed at the time from social services and I can’t thank them enough for that time. My other daughter went into her shell. She didn’t want to know about her dad getting any worse and it was at the time when his condition was changing quite dramatically and he was going in and out of hospital. And these were little things that you were going in for but they were concerning his MS. I tried to keep both children up to date When they were younger they dealt with it a lot better than when they got older. When they were younger there was one incident that my husband had where it was near Christmas, we had the community alarm system, my husband fell between the bath and the toilet and I couldn’t pick him up. So I got two pillows, got a duvet, put it over him and said, “Stay there, I’ll go down and get the community alarm system”. Sang Christmas carols with the woman there because she had to stay on the phone until the paramedics got to the house. The paramedics got to the house with my husband shouting, “I’m still here, I’m still here.”[laughs] And basically he, my daughter, one of my daughters came out of the room and basically turned around and looked at the paramedic and said, “Oh, you’re here, oh right, OK, dad’s fallen again, I’m going back to bed”. And turned round and went back to bed. Now, that same daughter doesn’t want to have anything to do with her father. She’ll see her father possibly once every two months if I’m lucky. She doesn’t want him to get any worse than he is and I think it’s her blanking the condition out. My other daughter, the youngest one, has now accepted the relationship that my husband is slowly getting worse and goes and visits him at the home once a week. So the, the two children have sort of gone their own way with my husband. It’s very difficult on my husband with my eldest daughter because he does want to see his daughter, he does want to know about her life because she’s left home, she’s living in her own home but doesn’t want to go and see her father because she’s afraid of what she’ll see each time she goes down. Whereas the other one is quite happy at the moment to go and see her father on a weekly basis, and actually comes home from Uni specially to go and see him. So it’s, it works in different ways with the children. I can’t even call them children now. Young adults. I don’t know whether my eldest daughter will change over a period of time and start to go and see her father but I’m not going to push it. I feel that they’ve got to do their own thing in their own way. I think if you start pushing children all the time in one particular direction you’re going to end up fighting with them and you’re not going to get what you want to achieve out of that relationship. Whereas my husband and I have agreed if she wants to come and visit and we’re going at the time, fine, she can come along. If she doesn’t want to visit that’s up to her. Whereas my other daughter is quite happy, she’ll go and see him. She’ll go and take things for him. And she’s quite happy at moment. Whether that will change, I don’t know.

Chez gets disheartened and depressed by ‘fighting’ with social services, but she keeps going because she wants to get the best possible care for her husband.

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Chez gets disheartened and depressed by ‘fighting’ with social services, but she keeps going because she wants to get the best possible care for her husband.

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And that was the start of working with social services. It was quite easy to start off with because they were very helpful. [Name] then started to go into hospital. We had help from IRIS, which is another unit of social services that help you when a person goes and comes out of hospital, they will help you with six weeks of care after the person comes out of hospital. We got that sort of care It’s only been in the last three years as his condition has deteriorated and he’s gone into hospital more and more that the care side has now gone on to the financial side where you have to start paying for the care. The NHS continuing health care which is supposed to have, [name]’s supposed to have had, has different criteria for different counties. It’s not a set criteria all around the country, so one county might accept him but this county won’t accept him. So I now have to fight social services with the amount of money that they would like to take off me with the amount of money that I actually have. And it’s a, let’s win contest of who’s actually going to win out of this. And at the moment I’m the stronger person. Because I’ve got more information as I’ve gone along and have found out what I can use, what I can’t use, what is acceptable, what isn’t acceptable and it’s a way, you’re always trying to find out the information that is needed for the, about that they would like to have off you with the amount that you have or you just fight. The only word I can use is you are fighting social services all the time. It’s not a happy medium with them. They’re always after something if it’s not information they want to know the hind leg off a donkey, you know, you just cannot have a nice happy medium conversation with them. It’s always we would like to know this, we would like to know that, we want you to do this, we want you to fill this form in, we want you to fill that form in. And you’re going over the same information time and time and time again. It’s a bit like the Disability Living Allowance forms etc, you go over the same question about five times. It’s asked in different ways but you’re going over the same question time and time again. And it can get very down, disheartening. And you can get very depressed with it. Just with the social services side of it. But at the end of the day you want to achieve the best that you can and you want to have the best care that you can for that person that you love. So you just keep going and going and going until you can go no more.

Chez thinks it is easier to live life day to day rather than looking weeks into the future.

Chez thinks it is easier to live life day to day rather than looking weeks into the future.

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How far into the future do you, do you look?

I look day to day. I don’t look into the future. The future to me is daily. I find if you look too far ahead you don’t achieve what you want to achieve. So I’ve learnt not to look into the future. I’ve learnt to look daily. It’s just the way I’ve adjusted my mind set. Things have happened in my life where I’ve looked into the future and they’ve changed considerably. So now it’s day to day and if I achieve what I want that day it’s been a, a good achievement. If I visit my husband that’s been a good achievement that day. Rather than sort of looking weeks and weeks and weeks into the future it’s, I just don’t do that now. I used to but I don’t any more. I find it’s a lot easier to deal with things if you look on a day to day basis rather than looking too far in the future, because the future can change and it can change rather dramatically. And it has, many a time [laughs].

Chez thinks that moving to Wales will be a positive step because it is something her husband really wants to do. She is used to moving around and thinks the time is right for something different.

Chez thinks that moving to Wales will be a positive step because it is something her husband really wants to do. She is used to moving around and thinks the time is right for something different.

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I know at some point that something will happen to my husband I have a positive outlook on life. It’s one of those things. If, if something’s going to happen to him it’s going to happen to him. It doesn’t matter what I say, what I do, at some point something is going to happen. Me sticking with a positive outlook on life is just my way of coping with things. The move hopefully to Wales is a positive outlook for me, because it’s something that my husband wants to do. He didn’t tell me for a long time that he wanted to do that. We’ve had a lot of things happen to us while we’ve been in the [place name] area and some good, some bad, some horrendous. And I think it’s time for a move, it’s time to move on to something different. And I think the time has come now just to do that change. And [name] him having the presence of mind to tell me that the time has come, that he wants to make those decisions and wants to, to move now is the time for me to say, “Right, OK, let’s get up, let’s get it, you know, get ready. Let’s do it”. It’s a long fight to get there It’s something different. It’s somewhere I haven’t been before but I’m there, I’m going to do it. I’ve moved around with him I think, I’m 42 now and this will be my 32nd house that I’ve moved to through both my father and my husband being in the forces. So moving around is nothing for me. It’s, I just place feet wherever I am and just get on with life. I think that’s why it makes it so easy for me to just say, “Yeah, OK, let’s get on, let’s do it, let’s just go”. I wish it was a lot easier to go [laughs] but we’ll get there. And we will do it. And that’s why I’m so positive.
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