CARERS’ STORIES
(Extracted from video interviews with carers )
ATTITUDE
I always have to take my brother [with mental health problems] to the GP, and take him back and, go home, drop him back, find time off from work, or make sure the arrangements are in such a time that I can make up the time at work. There was this receptionist.... All I wanted to know was, had the results come back. First she didn't want to answer then she questioned me thoroughly but just kept on saying it was confidential and she couldn't give me that information. The whole reason for my asking was because then I could make the appointment accordingly. If the results had not come, then there was no point in my making the appointment. But she just didn't seem to understand it.
So I, in the end I was defeated, in spite of all my tremendous effort, and I had to put the phone down .I can imagine what happened next. This receptionist probably went out to all her colleagues and said “this stupid woman, this horrible nasty carer” or whatever - and the GPs all knowing. When I did seethe GP, she seemed to know what I had gone through but they just shrugged it off: “Oh it's just one of those things.”
VALUE OF CARER’S PERSPECTIVE
I feel they don't know them. They have an idea and they donot take enough notice of what the carer says. My son couldnot see anyone. He was not communicating. He found it difficult to have a conversation because his main problem is communication.There are signs that the carer can recognise that the professionals might not. Because he has never been to hospital, never been sectioned, never been hospitalised, he has always managed to stay at home. But he was still ill - not functioning. Perhaps he was not a danger to other people or to himself, but he was still not well. As far as I am concerned if you can't socialise, have even a part time job or have fun with people, you are not well, -that's the way I see it. Sometimes I think that the professionals think he's quiet in his corner, he's not causing any trouble, he is stable -as they say, “fine, he's not in a crisis.”
CARERS WAYS OF COPING
You end up with a completely different husband, one that you wouldn't choose to marry. Nobody would choose to live with all of that. A lot of my tears has been grief, letting go of the old husband that I had and embracing the new one. Then -well because I've got a faith, believing that he will get better in the future, but having to face what's happening day to day. I've just learnt that grief is the word for it. Some people do not understand that, family or friends, so I just grieve to myself. I've learnt to share with the right people. Some people say, if I was upset or crying, “Anne, you're being negative. You're not supposed to be negative as a Christian, you must pull yourself together and, you're being emotional and, you're an emotional wreck”. I think - no - God wants us to embrace our emotions. So I've learnt by myself that I not going to share with that person anymore - because they're actually a bit flaky – and just share with the few right people that actually understand that it is actually a grieving process because you have actually lost that person.
CARERS AND INFORMATION
Perhaps if professionals gave carers a bit more direction it would be helpful because there's so much information you could get it can get confusing. Sometimes we carers we might just say we want information but we're not very clear in our mind what information you want. But if the professionals worked with us and helped us to identify what information we wanted, then we could say OK, I want information about medication, about what exactly this illness is. Then we could be saying, what are the choices of medication? What are the choices around therapies?’
PCA EM 13.09.13