It completely changes your world view around, so you’re worrying about fairly inconsequential things like what colour to paint the living room or where to go on holiday, and suddenly all that is swept away now you’re looking at health and treatments and medications and hospital appointments.

We really were not sure what to do. We felt fairly on our own. I was still going to work because we still had the bills to pay, but Ann was needing quite a lot of care at that time, so I was working and rushing home and being a carer, and doing the shopping and the housework.

Then a friend asked if we’d thought about contacting St Helena Hospice. So Ann herself phoned up and explained her situation and a very nice lady said ‘well come along and we’ll have a chat’ and she was then accepted into the day services, as it was then.

She went along one day every week and she absolutely loved it. It just changed her life. I think to meet other people that were in a similar situation meant she didn’t feel quite so alone. She just loved the whole atmosphere of the place. It sounded to me a bit like a cross between a golf club and a social club! She just loved going there. She had various complementary therapies but I think it was the social aspect that she liked more than anything. It was just being with other people and being able to talk about how you felt with people who understood; she gained an awful lot from that.

I was told they were organising a carers’ workshop and I thought I’d go to that because, like Ann, I felt alone. I didn’t have anyone to talk to. So I loved that, I found that very useful, just to meet people who were in the same boat.

One of the things I said while at the group was that I was amazed at how difficult it was to organise Ann’s medication. I said, we’re both fairly intelligent people but we seem to be having these arguments all the time about ‘well did you take that?’, ‘yes I’m sure I did’, ‘are you sure or was that yesterday?’ And then somebody said ‘why don’t you use a pill organiser?’ which I’d never heard of, didn’t know these things existed. So it was going to that workshop that sent me out to the chemist to buy one of these organisers and that solved the problem. If the pill was still in the box it hadn’t been taken, if it wasn’t there, it had been.

Looking back, we were just so naive about what support was available and I was surprised how little information we got about some of the things. We didn’t even know the questions to ask never mind understand the answers. I didn’t realise we could get medication prescriptions delivered, so I’d rush home from work, get Ann some tea and then rush off to the chemist to get her prescription. I didn’t realise I could have got that organised, nobody had ever mentioned it. Standing in a queue at the pharmacy was a real pain when I really wanted to be at home with Ann.

In hindsight we just knew nothing about the health system at all; we’d never been involved in it, and suddenly overnight we had to be. It was a very, very sharp learning curve.

The carers’ group was superb. They taught me what was going to happen, what I would need to do afterwards in terms of the admin, what sort of things to look out for. Just having a little bit of information in advance takes the stress away and the carers’ group was great for that, so I was always eternally grateful for going on that one. I really nearly didn’t because I wasn’t a great one for going on courses, and there was so much else going on that I thought can I really spare an afternoon to come on this? But it was so useful I was always really glad I did.

It’s difficult to describe to somebody who has not been there, how lonely and exposed you feel having the responsibility of caring for somebody without the knowledge that you need and no back up. You just feel totally on your own and hoping that nothing is going to happen. I wish SinglePoint had been there at the time. I would have paid a lot of money to have had that there.

It’s strange being a carer, because in one respect you are an amateur and in another respect you are an expert where the other person is concerned. So I think sometimes when a carer says to a professional ‘I think this is serious because it’s never happened before’, they’re in the position to know that something’s not normal and yet quite often they’re not listened to. It is a very strange position to be in. Quite stressful. You can say this doesn’t look like anything I’ve ever seen before, so I’m taking it seriously but sometimes it’s difficult to convince a professional of that because they see you as an amateur, which in all other respects you are.

I couldn’t believe how stressful it was and I didn’t appreciate how much toll it took on me. I think when Ann died, I didn’t feel back to normal again for at least six months. I was absolutely exhausted. I was running on empty both mentally and physically but without realising it. I’m sure other people probably noticed it. I was, so I’m told, a lot snappier or volatile than I normally am. I remember going to the pharmacy one night and they had half the prescription and I had to come back the following day for the other half, and I just lost it because I really didn’t have time to go there twice. And that’s very unlike me and then I apologised to the assistant, it wasn’t her fault. I thought oh gosh this is getting to me. But you just have to cope, you’ve no alternative.

So that carried on for probably nearly a year, and then things deteriorated fairly rapidly. I always remember, her nurse visited and found Ann in quite a confused state. She arranged for Ann to go into the Hospice to see if she could become stabilised, which was a bit of a shock because we suddenly thought, oh gosh that’s the next level.

So we went along to the Hospice, at which time I thought I was coping all right but I didn’t realise how near the edge I was. It was the first time somebody spoke to us separately; a nurse did an assessment of Ann and a different nurse took me to one side and asked me how I was getting on. Nobody had ever done that before, and I’ve never forgotten that. In fact, all I did was burst into tears and just say how awful it all was, how I didn’t quite understand what was happening, and questioned why it was all happening. I just thought it was wonderful someone asked me. Nobody had ever done that.

I think everybody just focuses on the patient and sometimes sort of ignores the fact the partner is probably under equal but different issues and stresses.