Johanne’s battle for a 10-year plan to save carers from overwhelming load
Johanne Powell sits at her kitchen table, a pile of bibs neatly stacked in front of her. She has been a carer for half her life, looking after her daughter Siobhan, who was born with an intellectual disability 35 years ago.
'I feel I have a life that I wasted. It's sad and it's annoying. I have done nothing in 35 years, only looking after one child,' she says.
Now 65, Johanne is afraid about what will happen Siobhan when she and her husband Alan are gone. Like many carers (35 per cent in fact), Johanne suffers from depression.
'I suffer from depression. I'm just coming out of a bout now. I get a black feeling I never used to get before. I have been told by the doctor that being a carer is what caused it. It's quite common. I'm lucky, I get sleep because she sleeps. I wake up at 4 a.m. planning funerals. That's how my mind works.'
Johanne shot to national attention when she appeared on The Late Late Show and Prime Time. She was also featured in a national newspaper and in this publication. She finds solace in the fact that her forthright comments about the challenges carers face and the lip service they are paid by the powers that be has resonated with carers throughout the world.
'I still get people who contact me occasionally to say what it meant to them. I had someone from Florida and someone from Canada who had Googled carers fed up or angry and I came up and they contacted me to say how much they got out of it. It is wonderful but when you are in the depths of depression it doesn't make a blind bit of difference. You think that's one person, how many people haven't I helped because you're always looking at the negative.'
Johanne is a board member of the Family Carer's Association and is fighting for a ten year plan to help a health sector hanging on by a bitten fingernail.
A photo of Siobhan with Johanne adorns the cover of a carer's booklet called 'Paying The Price: The Physical, Mental and Psychological Impact of Caring', a harrowing, damning read, showing widespread systemic failures in caring for some of our country's most vulnerable citizens.
'Nationally they reckon one in ten people is a carer. That is counting the person who goes into their mother and ensures she has the shopping in, but heavy caring, there are over 3,000 of us in Co Wexford. The figures are staggering. They had a similar survey ten years ago and the figures have gotten a lot worse in everything over the ten years from mental health among carers, to physical abuse.'
The average carer now is 49 years old. 'I'm 66 next month and you're not able for it as much. One of the things they found was 48 per cent are diagnosed with mental health issues.'
Johanne's doctor told her that her depression has arisen directly from her being a carer.
She hasn't been able to work since Siobhan was born. 'Siobhan is 35 now. She has been attending the same basic day care since she was two but that has been in Wexford town. I spent the first 14 years fighting for education for her because as a severely disabled child she wasn't deemed educable. I spent five years after that looking for transport but there's still the problem. Now I am trying to get her into residential care because I am getting old. I need to see her settled. If my husband and I die today she loses her home, her parents, a place to be, so she doesn't just have the grief of losing us, she faces the prospect of her whole life disappearing. She is likely to lose the day centre also because there is no places in Wexford.'
The HSE suggested putting Siobhan into a nursing home.
'That's how bad it is. There isn't any place free anywhere in the country.'
Johanne has attended counselling and was on medication for a decade. 'I'm a year off tablets now. I attend a support group in Wexford every month. I go nearly every time. Most of my good friends are carers now because when you talk to another carer you don't have to explain. You don't have to say "I'm finding Siobhan really have going, of course I love her". They understand without you having to explain.'
Siobhan gets collected at 8 a.m. and is brought to Ard Aoibhinn in Wexford. She is dropped home at around 4 p.m. but Johanne has to be available, like most parents of children with disabilities, to run and collect her at short notice.
'Children with disabilities get ill more often than children without,' she explains.
Abuse by the child of the carer is on the rise, she says, adding that she does not experience any from Siobhan. The latest carer's report has found that 44 per cent of carers are regularly exposed to abusive behaviour both physical and mental.
'Because she is so small. She weighs about 20 kilos. I have less physical symptoms than most carers.'
On the Late Late Show she said she didn't want to be told she was wonderful because I'm not.
'I'm tired of her. I'm bored out of my tree here. I'm doing the same thing as I did 30 years ago. I'm changing nappies. When you have a baby, when they do things, reach milestones, the first time it's exciting. I tell you the 153,000th time you've changed a nappy there isn't much excitement and the same playing with them or feeding, nothing changes.'
Siobhan suffers from kidney failure so she is in bed by 5 p.m. and if left undisturbed she would sleep until noon. 'We wake her up to get drink into her.'
Johanne said she has been very down at times but has never considered taking her life. 'I can't because if I took my life I'm throwing my daughter onto my husband. I have sublimated (the thought) through fighting. I use all the negative energy to fight for Siobhan, but it's tiring. There are times I think "I can't let them get away with it"'
She said most carers are driven to the brink of madness. 'Most of the carers I know have been caring so long they have a coping mechanism. Some of us cope by pretending their children are children even when they're 30. I used to but I stopped. It can creep in. I don't like seeing children who were born the same time as Siobhan as it's too painful.'
Alan's family have been brilliant, she says. 'His mother Lettie is absolutely unbelievable. She doted on Siobhan, not as a disabled child but as a child. It never entered her head or Alan's head. She was just Siobhan. I could have coped easier with a physical disability. In my family being clever was always so important; it's just the way my family works.'
Johanne is an obsessive reader of psychological books and fantasy, science fiction just to escape the grinding routine.
She said Mick Wallace and Brendan Howlin have helped her get supports, but overall there is a lack of political will to help carers. 'Last year Jane Johnstone and I, who have been friends through Ard Aoibhinn, said we should do something about the lack of services. Through the Family Carers we set up a public meeting in Wexford town. It was a meeting for the carers but political representatives were invited to listen and I think they were quite shocked about what they heard. After that was finished we set about finding figures for Wexford.
'Because Jane had been working with Mick Wallace we got him to ask the questions and we got several answers and we are going national now through your newspaper.'
The figures show of the 19 original applicants for residential places in Wexford in 2010, only six had been housed by December 2018. With the present list now of 64 that means to clear that waiting list now is 85 and a half years.
'Wexford was used as a test case to see which questions needed to be asked to get answers. We are calling for a ten year plan for what is going to happen regarding respite and residential care for the next decade.'
Siobhan is on the residential list for eight years according to the HSE, but according to Johanne it's 25 years. 'The problem is they don't keep the list. I have just filled in the form for the county council confirming the housing list again. The criteria for getting on the list is that the carer has to be dead, abused or abusive. There is no plans for anything to improve respite or essential services. They gave us more home support in the budget but the home support that they gave us isn't making up for the cuts they had brought in.'
Siobhan has three hours a week home support on Saturdays. 'It's fine. It gives me a chance if I'm away somewhere Alan can get a break or I can go to town for a few hours. If you have a child that's under 18 and you get home support you are not allowed to leave the home. Either you have to be there or someone else who is willing to take the responsibility if something happens your child.'
Johanne attended a protest in Dublin calling for a ten year plan. 'We managed to get out about 75 and that is a massive number for us. We normally can't get them out at all because they can't get out in the morning, they have to be back in the evening.
'Even locally a lot of them are afraid that if they are seen in public that people are going to think they can manage and can lose services. I'm probably the best known person in Wexford for looking for services so they can't touch me because the minute they did there would be a rebellion. I refuse to be invisible. I know several of my best friends that are invisible because some are afraid they will lose services and others aren't as comfortable talking as I am. I have been getting annoyed for 35 years.'
Johanne said: 'All of the politicians think we are wonderful so if we are give us a ten year plan. They seem to think we want palaces in the sky for our children. We are people like you so we are not unrealistic about what we can get.
'But there hasn't been money put in for people with intellectual disabilities for ten years. They ignore us because they know we cant dump our children and protest. We can't link hands outside the department doors. They use us and abuse us because they know we are powerless and we can't fight back.'
She said Wexford is one of the worst counties in Ireland for looking after people with an intellectual disabilities 'because we never had of the main orders here like the Brothers of Charity or Sisters of Charity or St John of God so we never had a big centre. The closest thing we had to that was the Sisters of St John in Enniscorthy. Ard Aiobhinn is one of the biggest providers of services and that is basically run by parents. We have a Section 39 grant from the government.'