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].

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. Weve had a lot of things happen to us while weve 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 well get there. And we will do it. And that’s why I’m so positive.

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. Shell 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 shes left home, shes living in her own home but doesn’t want to go and see her father because shes afraid of what shell 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 were 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, shell go and see him. Shell go and take things for him. And shes quite happy at moment. Whether that will change, I don’t know.

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.

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.

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. Weve 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 hes 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.

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 were not sure on or we want more information on we will go out and well 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 weve both turned around and said at the same time is that were soul mates. It’s the biggest thing that weve 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.

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.

He has progressed from remit-relapse MS to secondary progressive MS in the last five years. And now hes had MS, I think its 24 years so far. So, hes 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.

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.