independent

Monday 9 December 2019

When it is love at all costs

Physical abuse is part of the life of a carer. Here widow and mother of two children with disabilities Jane Johnstone tells for the first time of how she suffers blows while caring for her son who loses control sometimes

Jane Johnstone and her son Evan
Jane Johnstone and her son Evan

A love heart decoration hangs on the wall of carer Jane Johnstone's kitchen which reads: 'Love makes our house a home'.

Beside it is another: 'Welcome to the Nut House'.

A sense of humour is vital for Jane - a widow and mother of three children, two of whom have severe intellectual disabilities.

Her son Evan is 19 but his mental age is closer to 19 months.

Standing 6ft 4 tall and weighing well over 20 stone Evan requires round the clock care.

Hs brother Daniel is 15 and is on the autism spectrum.

'Evan is a great guy but he has a lot of care needs. He does need a lot of support,' Jane says.

'He is 6ft 4 and is completely non verbal. He has autism. He is partially sighted with 50 per cent of vision in both eyes. He was diagnosed with that in 2015. He has a history of fractures and he fractured his spine. He walks on his toes and has had surgery on his hips.'

She has been looking for a care plan for Evan since he was 16 and an individualised budget was agreed after Jane used this newspaper and other media to highlight the lack of supports for carers and their loved ones.

As far as she knows she is the only person to have secured such an agreement, one which allows her the time she needs to do work for Mick Wallace.

Following the death of her husband Rod aged 50 in 2014, Jane found herself caring for three children.

In 2018 she successfully fought to keep her family together after moves were made to house Evan in residential care elsewhere in the country.

'I would have discussed it with them at many meetings, my concern for Evan and what he needed in order to transition from child services into adult services. My main goal was to keep him at home in my care. We have already lost a lot and Evan is a big part of who I am and I am a big part of who he is and for all he'd be lost without me, I'd be lost without him too. We are very connected Evan and I.'

Evan attends a day centre for people with intellectual disabilities in Wexford.

He also gets four weeks a year respite.

'He has a lot more access now to the community and exercise which he mightn't have had. It's great that we have our own respite centre here in Wexford. Like any young adult he needs somewhere he can belong.'

Evan has been receiving care at a day centre since September 2018 and is very happy there. He gets collected at 9 and is there until 3.30.

He was assessed by the HSE for requiring two to one care which was above their budget limit.

'They have an allocation per adult. It's two people unless it's me and I have Daniel as well who is autistic. My daughter Ciara is in college but she still needs my support too.'

Jane said the individualised budget is being piloted by the HSE and is working for them. 'I organise services for him as I know him best. Out of that budget I was able to organise his transport to his centre and back. He also gets his respite support. Instead of having home support Evan stays a little longer at the centre which gives me a little more time to spend with Daniel who is 15 and requires a lot of care.'

Evan gets four weeks respite a year but Daniel will only get four nights. 'I am working to see if I can use a bit of the budget for Daniel as well. If Evan did go for respite for a week, I still have Daniel to look after.'

Jane said she doesn't regret running in the local elections last May. During the campaign she highlighted the needs of carers throughout the county and hopes that by going public with her story again by-election candidates will sit up and take notice. 'I had to take that step in speaking about it publicly. The people of Wexford were very supportive. There was an awareness benefit in it as well. The system wasn't aware that we are getting this really wrong. They did respond then in fairness to the HSE. I do believe that the transition process from the children's services in school, to the adult services, is smoother now. Assessments are done and needs are identified rather than waiting for the bus to crash at the end of the road and what are we going to do now.'

She said: 'I met a lot of people. On one side of it you do meet the people who are caring for people with elderly parents. For me personally it opened my eyes to all of the suffering out there. There are a lot of pockets of people who are forgotten about. Equality is hugely important to me.

'We have placed all of that weight on the family carer. We have a lot of work to do yet. I am a widow and a carer. I get the widow's pension and the carer's allowance but I only get half rate carer's allowance so the state actually values more as a widow than as a carer.'

Challenging behaviour is a term familiar to many of Co Wexford's 6,200 carers.

For many being hit by the person they devote their life to caring for - is part of their lot.

'It could happen here,' Jane says.

'His challenging behaviours are quite rare but when they do happen they happen in a big way. He is 6ft 4 and is extremely strong. Then he gets overwhelmed and gets to a point where he can't actually control himself. He might be trying to communicate something and nobody understands. He might want to be in an environment that he doesn't want to be in.'

Jane recalls a night when Evan went upstairs and decided to jump on her back when she was bringing him back down.

'He charged down the stairs and jumped on my back. Developmentally Evan is around 18 months. He was laughing. When he was small I used to give him piggybacks. He thought this was funny. I was nearly gone. I got an awful fright. It was a Saturday night and nobody was down for the weekend. We might not have seen anybody again till Monday morning. I could have been knocked unconscious or worse and what would have happened to the boys.'

She recalls other near misses, including when he fell out of the shower and knocked her to the floor.

'It's a big worry as are we here on our own in the country. You would feel it because it comes with such frustration and such power. He doesn't know his own strength and he can't actually control it. There is no point saying it doesn't happen because it does happen. There is no intent there. There may be frustration .He may be trying to communicate something I can't understand or he wants six packets of crisps and he is not in the form for me to say no or because the ipad won't work or the wi-fi is down and I know that Evan feels that frustration in his body and it manifests in his body and sometimes I am at the receiving end of that. It doesn't happen often but it does happen.'

Jane said it is part and parcel of being a carer. 'But as he gets bigger and I get older. When it's someone who is 6ft 4 towering over you. In fairness he knows after he comes down that he has hurt me and he is very upset by it. There will be tears and there will be rubbing my head and kissing my hand. To me that is the most heartbreaking part of it to be honest with you. He totally doesn't mean it. The last thing he wants to do is to hurt anybody. Do any of us know what it's like to be a 19-year-old man with an 18 month old mind, and yet with a higher mind in other ways. He is nothing like us at all.'

Dealing with challenging behaviour when you area carer in the home is a big issue, she said, adding that it's something that carers rarely talk about.

'Even within my own family we don't because you feel like you're being a little bit disloyal because you know there was never an intention there and when they do now they've hurt you it's more than remorse. It's a case of "who was that, it wasn't even me but I know I hurt you". It's because of frustration and living in a world full of words when you don't have any. I think Evan and people like him do very well considering. I think they've a lot more to teach us about humanity than we can ever teach them I think we get too obsessed about making them like us. What's so great about us?'

She urged people to reach out for help. 'Always ask for help. Unfortunately sometimes you would hear from people who say they know they need help but they don't know if I am up for the fight. I think we've got it the wrong way a round. I think the HSE should be saying "What do I need to support this family before it gets too much?" You are putting an awful lot of suffering on people and carers save the state €4bn a year. If we were to down tools in the morning the health service would complete melt down. We care for our children because we love them. That love is something that should be recognised and not taken advantage of and something that should be valued.'

She said: 'Sometimes the system might seem very powerful but carers have their own power. The carers I know and a lot of my best friends are carers. They are the strongest and most resilient people you'd meet. They do what other people couldn't even contemplate.'

Jane works part-time for Mick Wallace, either from home or from his centre in Ferrycarrig.

'It's about bringing the work he does in the Environmental and Health committee in the EU down to grassroots level here in Wexford. We're bringing in people from isolated social sectors in as well. It's good for my head. I am working on a project on the environment with Mick which is something good for me as it's different to disability, which I cam passionate about. I am a psychotherapist as well but I can't do it as I wouldn't be able to commit to clients which wouldn't be fair.'

There is a mental health aspect from working with the environment, she said.

'We are also working on bringing a group of carers to the European parliament early next year, ten of us, which I don't believe has been done before.'

They will give a presentation to Irish MEPs in early 2020.

'There are 22,500 people with disabilities in Co Wexford so there are a lot of people who don't reach the priority list, including for politicians. The lack of planning leads to a huge amount of anxiety. You have the isolation of being at home all the time, looking out the window and seeing the cars go by. Daniel is at home in half an hour and if we don't have milk or toilet paper in you have to do without it. You are very isolated socially. You spend a lot of time on your own with the person that you care for.'

Apart from visits from her sister every fortnight for the weekend, Jane has little scope to get breathing space.

'I am doing three people's jobs if I was to go by the HSE. Myself and the two boys can't just go into the car to go to the shop. Two to one has to be covered if I go outside the door. With the individualised budget I can tailor it. The companies I work with are always very accommodating. It is a struggle to get the services but when you get in there they are brilliant. They are very selfless people and develop brilliant relationships with Evan and Daniel.'

She said the individualised budget was the cheapest option for the state because to put Evan in residential care would cost four times as much. 'It's better for Evan, it's better for the HSE and it's better for society. I don't think we should be saying you are a little bit different so we'll put you in somewhere. We are better now than before but this old legacy is still there, present and underlying in the consciousness of the system. Every now and again it needs a little shake by someone like Johanne Powell or myself.'

Jane says: 'As a carer you are always the last on the list: the proverbial Irish Mammy.'

The family enjoyed a holiday to Portugal last summer. 'The whole holiday had to be designed around Daniel's needs from the time of the flight, to the taxi being on time and where we could eat. He needs to know what's happening.'

Jane also has to contend with rivalry between her two boys for her attention and affection. 'Daniel has a lot of anxiety and Evan can be quite noisy and loud. People like Evan are very misunderstood. He is a very sensitive chap. When he looks into your eyes he can see your soul and knows when you're sad. Evan doesn't have any speech but he'd come up and hug you. I do have bad days and he knows, even though I will try and hide it from him. It's something very special.'

Evan also goes through episodes of disruptive sleep patterns but she chooses to not go down the medication road. She said being a carer is mostly a rewarding experience. 'This is a choice I've made. I haven't gone into the HSE and said I can't do this. I want my sons to live with me as long as I physically can. I'd be a very different person if I didn't have those two boys. I have learned so much about life, human resilience, you put one foot in front of the other and no matter what life throws in front of you, you keep going. There are times when some people think I've a terrible life and sometimes it can be very hard, but there are times when the boys just crack me up and we have a great laugh together. We are unconventional but does that necessarily have to be a bad thing?'

In many ways they her sons are like any other teenagers.

'Evan likes music and plays the harmonica. Daniel loves 70s and 80s music. In a lot of ways Evan is like a 19-year-old. It was Rod's anniversary only last month. It was five years and it hit us all hard. Maybe it was because I was approaching my 50th birthday. It just found those weeks very hard but it's not something I'd show to anyone, particularly my children but Evan knew and he was patting me on the back and very much being the protector.'

Jane is concerned about what will happen her boys when she gets older.

'Care for the intellectually disabled is year by year, with no lifelong planning. I get calls from people with young children who have just been diagnosed and they are trying to get into early intervention. There is child and adult services. The cycle of life is parents get older and we get sick and children get bigger and older too and there is no long term plan. There isn't even a plan to have a plan. Residential care when carers like me can't looks after them anymore. Housing is needed and there is no plan for housing people with intellectual disabilities. Some places have plans but Wexford has no plan at all so when the carer passes away or becomes sick or becomes incapacitated at all the only place they have to put them is into hospital so they are actually homeless. The system is calling them bed blockers.'

Putting them into nursing homes with people with Alzheimers is not acceptable either, she said.

'This is not something that might happen. It's something that definitely will happen. The HSE don't do multi-annual funding which is something the Government need to address.'

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