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.

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.

It was a very, very sharp learning curve. 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.

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. 

So that carried on for 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. Everybody just focuses on the patient and sometimes sort of ignores the fact the partner is probably under equal but different issues and stresses.