アイルランドの重症者の両親の語り
Siobhan was ill for eight weeks, and stayed at home. Her parents took her for blood tests, to try to discover if her kidney condition was deteriorating.
“The doctor told us the blood tests were fine and that he’d see us in another 10 years,” Johanne says. “I was, like, ‘Ten more years?’ Which is a terrible thing, because it was happy news, but at the same time, in the back of my head, there’s a voice saying, ‘Ten more years?’ Can I survive 10 more years of this?”
“We’ll need someone to wheel us around then,” Alan says. “I want my life back, and my wife back.”
“I want to be able to have a life while I have a life,” Johanne says. “I want residential care for my daughter. There is no such thing as retiring for carers unless you die.
“It’s hard to say these things, because you do feel guilty about saying you don’t want your daughter at home. It’s not that we don’t want her at home, but I don’t think I can cope much longer.
“I’m normally a fairly optimistic person, but I bruise more now. I wake up in the middle of the night, worrying. When you’re young you bounce back. I can’t bounce back now.
“Who’s going to look after Siobhan when we die? They tell me that Siobhan will get a placement if we die. Where? Where is it? If we died in the morning, and that place is there now, why can’t she have that place now, not waiting until I’m dead and I have nothing left of my life?
“The doctor told us the blood tests were fine and that he’d see us in another 10 years,” Johanne says. “I was, like, ‘Ten more years?’ Which is a terrible thing, because it was happy news, but at the same time, in the back of my head, there’s a voice saying, ‘Ten more years?’ Can I survive 10 more years of this?”
“We’ll need someone to wheel us around then,” Alan says. “I want my life back, and my wife back.”
“I want to be able to have a life while I have a life,” Johanne says. “I want residential care for my daughter. There is no such thing as retiring for carers unless you die.
“It’s hard to say these things, because you do feel guilty about saying you don’t want your daughter at home. It’s not that we don’t want her at home, but I don’t think I can cope much longer.
“I’m normally a fairly optimistic person, but I bruise more now. I wake up in the middle of the night, worrying. When you’re young you bounce back. I can’t bounce back now.
“Who’s going to look after Siobhan when we die? They tell me that Siobhan will get a placement if we die. Where? Where is it? If we died in the morning, and that place is there now, why can’t she have that place now, not waiting until I’m dead and I have nothing left of my life?
“My identity over the past 32 years has pretty much been as a carer, and to say that I’m not satisfied with that identity, and that I don’t want that identity, is difficult. To say you don’t think you’re particularly good at the one thing that you do, and the one thing you can’t see any way out of, is so difficult.
“In Ireland, as a woman, nearly by definition, you’re supposed to be caring in the ordinary way of life. As an actual carer it’s difficult to say you don’t feel like that. I’ve heard people say, ‘Carers, they’re wonderful, they are all so selfless.’ I’m me. I can be selfish. I can be kind. I can be angry. I’m like everyone else. I am not selfless all the time. I don’t know why a lot more carers don’t say that, but I know a lot of them agree with me when I say it.
“In Ireland, as a woman, nearly by definition, you’re supposed to be caring in the ordinary way of life. As an actual carer it’s difficult to say you don’t feel like that. I’ve heard people say, ‘Carers, they’re wonderful, they are all so selfless.’ I’m me. I can be selfish. I can be kind. I can be angry. I’m like everyone else. I am not selfless all the time. I don’t know why a lot more carers don’t say that, but I know a lot of them agree with me when I say it.
I’m not doing this job by choice,” Johanne Powell says. “I’m doing this job because I have to do it, because there is no alternative. I don’t want to do it any more. I’m bored. I’m bored out of my tree doing the same thing day in, day out, with no changes. I swear to God I could walk into a supermarket and rob the place blind, because once you have a child in a wheelchair, by definition you’re a good person. It doesn’t matter what you really are.”
Siobhan was ill for eight weeks, and stayed at home. Her parents took her for blood tests, to try to discover if her kidney condition was deteriorating.
“The doctor told us the blood tests were fine and that he’d see us in another 10 years,” Johanne says. “I was, like, ‘Ten more years?’ Which is a terrible thing, because it was happy news, but at the same time, in the back of my head, there’s a voice saying, ‘Ten more years?’ Can I survive 10 more years of this?”
“We’ll need someone to wheel us around then,” Alan says. “I want my life back, and my wife back.”
“I want to be able to have a life while I have a life,” Johanne says. “I want residential care for my daughter. There is no such thing as retiring for carers unless you die.
“It’s hard to say these things, because you do feel guilty about saying you don’t want your daughter at home. It’s not that we don’t want her at home, but I don’t think I can cope much longer.
“I’m normally a fairly optimistic person, but I bruise more now. I wake up in the middle of the night, worrying. When you’re young you bounce back. I can’t bounce back now.
“Who’s going to look after Siobhan when we die? They tell me that Siobhan will get a placement if we die. Where? Where is it? If we died in the morning, and that place is there now, why can’t she have that place now, not waiting until I’m dead and I have nothing left of my life?
“The doctor told us the blood tests were fine and that he’d see us in another 10 years,” Johanne says. “I was, like, ‘Ten more years?’ Which is a terrible thing, because it was happy news, but at the same time, in the back of my head, there’s a voice saying, ‘Ten more years?’ Can I survive 10 more years of this?”
“We’ll need someone to wheel us around then,” Alan says. “I want my life back, and my wife back.”
“I want to be able to have a life while I have a life,” Johanne says. “I want residential care for my daughter. There is no such thing as retiring for carers unless you die.
“It’s hard to say these things, because you do feel guilty about saying you don’t want your daughter at home. It’s not that we don’t want her at home, but I don’t think I can cope much longer.
“I’m normally a fairly optimistic person, but I bruise more now. I wake up in the middle of the night, worrying. When you’re young you bounce back. I can’t bounce back now.
“Who’s going to look after Siobhan when we die? They tell me that Siobhan will get a placement if we die. Where? Where is it? If we died in the morning, and that place is there now, why can’t she have that place now, not waiting until I’m dead and I have nothing left of my life?
“I’ve had nearly 33 years of thinking about the things I want to say. It takes a good while – years – before you start realising how you feel about having a disabled child. I know I’m a fairly confident person, but when you’re worn down all the time it’s difficult to say these things.
“My identity over the past 32 years has pretty much been as a carer, and to say that I’m not satisfied with that identity, and that I don’t want that identity, is difficult. To say you don’t think you’re particularly good at the one thing that you do, and the one thing you can’t see any way out of, is so difficult.
“In Ireland, as a woman, nearly by definition, you’re supposed to be caring in the ordinary way of life. As an actual carer it’s difficult to say you don’t feel like that. I’ve heard people say, ‘Carers, they’re wonderful, they are all so selfless.’ I’m me. I can be selfish. I can be kind. I can be angry. I’m like everyone else. I am not selfless all the time. I don’t know why a lot more carers don’t say that, but I know a lot of them agree with me when I say it.
“Part of the problem is in the caring society itself: that we need to climb off the pedestal society puts us up on, but it’s very hard when you don’t have a ladder, and when you’re tired.”
When I return to the house on the second day Johanne has thought more about what she wants to say.
“Society needs to stop thinking all carers are wonderful. We are not allowed to have our own opinions. The truth is we are not superhuman. We are not special. We are not wonderful. Well, I’m not. And the more society thinks we are all these things, the more we get shoved away out of conversation or debate, because we’re supposed to be special, and therefore supposed to be able to cope with full-time caring, and people don’t have to think about carers as people with needs of their own.
Family Carers Ireland gave out its Carers of the Year awards this week, recognising the work of hundreds of carers who provide a vital service in Ireland, work that is estimated to save the State €4 billion a year. But Alan and Johanne Powell, who was Wexford carer of the year at last year’s awards, also want their work recognised in a different way – as a burden as well as a service.
“I have got to the stage of my life now where I realise I’m not perfect in any way, as a carer or as a person, and I might as well admit it,” says Johanne. “The longer I go around not saying what I feel as a carer, the harder it will be for the carers coming behind me. The younger parents might be out there thinking it’s not right to be feeling the things they feel. That’s why I wanted to speak out about this. I want to start a conversation.”
“My identity over the past 32 years has pretty much been as a carer, and to say that I’m not satisfied with that identity, and that I don’t want that identity, is difficult. To say you don’t think you’re particularly good at the one thing that you do, and the one thing you can’t see any way out of, is so difficult.
“In Ireland, as a woman, nearly by definition, you’re supposed to be caring in the ordinary way of life. As an actual carer it’s difficult to say you don’t feel like that. I’ve heard people say, ‘Carers, they’re wonderful, they are all so selfless.’ I’m me. I can be selfish. I can be kind. I can be angry. I’m like everyone else. I am not selfless all the time. I don’t know why a lot more carers don’t say that, but I know a lot of them agree with me when I say it.
“Part of the problem is in the caring society itself: that we need to climb off the pedestal society puts us up on, but it’s very hard when you don’t have a ladder, and when you’re tired.”
When I return to the house on the second day Johanne has thought more about what she wants to say.
“Society needs to stop thinking all carers are wonderful. We are not allowed to have our own opinions. The truth is we are not superhuman. We are not special. We are not wonderful. Well, I’m not. And the more society thinks we are all these things, the more we get shoved away out of conversation or debate, because we’re supposed to be special, and therefore supposed to be able to cope with full-time caring, and people don’t have to think about carers as people with needs of their own.
Family Carers Ireland gave out its Carers of the Year awards this week, recognising the work of hundreds of carers who provide a vital service in Ireland, work that is estimated to save the State €4 billion a year. But Alan and Johanne Powell, who was Wexford carer of the year at last year’s awards, also want their work recognised in a different way – as a burden as well as a service.
“I have got to the stage of my life now where I realise I’m not perfect in any way, as a carer or as a person, and I might as well admit it,” says Johanne. “The longer I go around not saying what I feel as a carer, the harder it will be for the carers coming behind me. The younger parents might be out there thinking it’s not right to be feeling the things they feel. That’s why I wanted to speak out about this. I want to start a conversation.”
