We were talking about [different sorts] of carers on Monday night at the group and the different way that people cope with your illness and we all agreed that actually being the ill person was actually the easiest part of that sort of relationship, because you’re ill, you’re going thorough it, you know how you feel. And, you’re quite selfish in some ways cos you’re thinking about yourself whereas your carer has to not only worry about you, but about their own feelings, how they want to look after you, support you, keep bad things from you all that sort of thing;

Its actually much more difficult for them and theres nothing for them, theres no support for them. I think that would be a good subject to use for your thing on the internet. You know, support for carers, because that’s a huge problem isn’t it? And we talked about it and I said, ‘Nah, my husband gets upset if I make a noise, if I go, ‘Oh; like that, he goes, ‘You alright what’s hurting?’ ‘, and I’ve got so many aches and pains that an involuntary gasp like that is quite a regular occurrence. And he gets so upset and I say, ‘Oh, it’s nothing, it’s just my foot or my wrist or… and he said, ‘Oh I thought it was your arm or your back’ and then he gets himself in such a state.

And particularly when one has to change ones whole approach to life; both my husband and I, or whoever is the carer and the patient, probably have to change their entire outlook on life. The things that they might have once been planning to do, holidays and things, might be quite out of the question and, and they have to find another way o; thinking about what they can do. And their attitude to life really. Yes, their attitude to life as well, because for the carer it must be a huge shock to realise that perhaps the person isn’t going to live very long that with a spouse anyhow, that, you know, can make a huge difference;

They might think everythings nice in life and then suddenly, this happens and if it’s, I was going to say, if it happens sort of early on in retirement as I suppose it did for us, when you think you’ve got many years ahead, then it’s a big shock;

I mean my mother lived to 101 and her sister lived to 103, well, it was only six months after my mother died that I acquired this illness quite out of the blue when I thought I’d got another forty years to live, and so it puts a different emphasis on life and you have to change your attitude really, and that isn’t easily done and it may be even harder for the carer than for the person who’s ill.

So I think that the support which somebody such as a hospice nurse, or it might be a Macmillan nurse or there are other forms of palliative care, I think these are essential really, to help people to get through it because I can quite see how perhaps a carer could have a nervous breakdown because of the huge changes in life;

I mean it may be even worse if the person who’s ill is working and is bringing, normally bringing in income and then is not able to do so. I wasn’t in that position but a young family… so there must be terrible shocks to the system that have to be coped with really.

Oh yes, now I’m very fortunate in that respect that I can… that my husband and I do talk about things. And then, I mean he… there are also aspects such as the health of the carer as well. And that has to be taken into account and we found that we weren’t thinking of his health sufficiently;

And we discovered that whereas the two of us had been going to the gym regularly twice a week, it all suddenly stopped when I became ill and so he wasn’t going to the gym, and so he put on weight and then he was found to have high blood pressure and so on. And so that’s all been dealt with now, but it was actually over a year before we realised that his health was suffering because of my illness, so that’s something which has to be born in mind.

What about carers allowance?

Right. Care Allowance is not brilliant in Good Care Allowance. I don’t know how much it is. I think it’s about ’53 now;
When you think somebody’s given up their work and they’re full time nurse and carer for 24 hours a day, it’s not a lot to give a person and they certainly lose their dignity. For my own husband that happened.

Is that what happened?

Yes;

When did that happen?

Quite early on in the disease when he became a carer because at the time my children were very young and they needed… and they were very unsettled because every time I’d go to hospital I’d end up being admitted or they’d come home from school and find me collapsed on the floor not breathing. One time my eldest found me totally unconscious, got me breathing and then rang for an ambulance. At the time he was 5 years old. No 5 year old should have to do that.

So your husband, you say, is a full-time carer?

He was, yes. He is back in employment now, mainly because I think it’s important, especially at his age. He needs to be in a job. Plus it also puts a normality range, that even if I go…

Are you all right?

Yes. Even if I go he has still got a job. Hes still got something to keep going and I think that’s important for a carer. People forget the carers; it’s a very hard task. Ironic, you know for a while I was my son’s carer and then I became ill so I needed a carer and it is hard. You’re on call 24 hours a day and sometimes with him I would never get to bed for 3 days. Wed go 3 days with no sleep.

At the moment my wife insists that she can manage but then I have a lot of support from other places which enables her to manage. But without a close family or friends then a carer can be very isolated and find that she can’t cope, or he can’t cope and I do know of people that that has happened to. Their partners have become ill and they haven’t known where to go for help. Theres been no immediate family. Theres been nowhere to go and as a result they themselves either become ill or the sick partner have had to go into some sort of accommodation before perhaps it would have been necessary.

Now that is very sad but that does happen so it is important that if you suffer with any illness, but MS and you have, you don’t have the help that you require, that there are ways that you can get it and the first port of call should be the Social Services office in your area. Now some of them are very slow and they try to delay things. You have to be able and be prepared as a carer to push and to insist that you are entitled to help because care in the community is supposed to be the modern concept so go for it and insist that you get the help you need.

Do you think that your wife gets enough support as a carer or are there gaps to be filled?

There are gaps, but I have to, we have to accept a responsibility for that ourselves. I would like to see my wife having for example someone to do a bit of domestic work, because my wife is eighty odd and I don’t want to see her driving herself into the ground and I sometimes get very guilty about it and I do. For example if I’m sat in my chair and not in my wheelchair, if I want anything at all I have to turn to my carer who is my wife. Care is very very important.