Walk a Mile in... Barbara's Shoes
Since childhood Barbara has been looking after and supporting her younger brother, John who has Down's Syndrome and is now in his 60's. With the support of her partner Michael, Barbara has realised that the worry and stress of making sure John is happy and has good care will always be a big part of her life.
Listen to Barbara's story to hear what it's like to walk a mile in her shoes.
Or you can watch the short video to hear what Barbara has to say about those who judge other people. If you prefer, you can read her story below.
"John was born in 1957 so he was 60 a couple of weeks ago, we had a lovely birthday party and really enjoyed it, he seemed so happy.
"It was obvious from the start, when he was born, that he had got Down Syndrome and how bad it was we didn’t know until he started to grow older. It was a shock for my mum and she didn’t deal with it very well. She was also a single parent and I was the eldest so I took a lot of the care and support for John because she never seemed to get to terms with it and as he grew older it was obvious that he was never going to be the same as our other siblings.
"There were five of us and the other four were just as distant as my mother was with him, so again, I took much of the care for him and he relied on me heavily. We had some good neighbours at the time luckily because that helped to give me some relief because it interfered with my schooling and then it interfered with my social life because my mum wasn’t keen on having him on her own to look after odd as it sounds, because it was her job. Nevertheless the Down Syndrome was just something she couldn’t handle.
"When I got married and left home she promptly put him into a care home and poor John lived in those care homes until he was 16. I worried about him but I had my own situations to deal with and nobody to help me and give me the support that I needed so it was a bit of a double edged sword for me. My siblings seemed to be happy enough to accept the situation but I was always worrying about John. I knew from the odd visits that my mother made that John was not having a happy time and when I got news of what was happening to him I got very upset, very upset and it tormented me for quite a while, until he came home.
"When he finally came home we had a few problems but it was happy times more or less. Then my mother died and we were back to, ‘well what are we going to do with John?’
Fortunately we had a couple who he used to go to for respite in Matlock Bath and he loved to go to them and they loved having him, they had five other Down Syndrome and learning disabilities people with them and they all got on like a house on fire. It was happy times, it was good to see John happy and I was more relaxed and I could get on with my life not feeling strained and worrying ‘should I be doing this when really I should be going to see John and see if everything is ok.’ I trusted them implicitly and it was correct to do so because every time I went John was happy as larry. He was happy and he was safe and it took my stress levels down tremendously. Not worrying all the time ‘should I be enjoying myself going out for a meal’ or ‘should I have picked John up and taken him with us’ or ‘is this happening with John, is that happening with John’. Every time we saw John he was happy as can be, and it was just me that was worrying out of habit. It was the best move we could have made for him.
"Then the people who owned the home retired, oh lord, what problems since then. We had a lot of work to do my partner and I, we had to try and get John rehoused somewhere that we felt comfortable about, and at the same time, there were five others that needed rehousing and any move for any of them would have been very traumatic. So we worked with the families of the other five and managed to get them in another care home as all six together. That was stressful but we did it, we got them there.
"At first it was lovely, they seemed as though they were trying to do the right thing and provide the correct care, but I think they were new to providing care for learning disabilities and they couldn’t get the staffing right, the care right. There were numerous problems, medically we were worried for John, he was having health problems so we were taking him to numerous appointments for either this, that or the other. At the time my partner and I were still in work, he owned his own company and, of course, he had to be there to run it. I worked for someone and of course I was supposed to be in my job because I was his sales and marketing manager. It was a small company and I was responsible for bringing in the income for everybody else that was there, by way of getting orders and training people to support me in my role and also support John wherever he was and with what he needed.
"I remember we had one particular nasty event happen and I spent so much time between hospital and doctors trying to get something correct that had gone wrong that I think I had a bit of a mini breakdown myself. I remember driving to work one morning and I got to the crossroads near where I work, and I should turn right, its automatic, I know how to get there but I sat at that crossroads for a little while thinking ‘where do I go now?’ I finally got to work, got to my desk and couldn’t even take my coat off. I’d left my door open, and someone walked down the corridor and did a double take and came back. I was still sitting at my desk and I hadn’t touched the cup of tea that had been brought for me, nothing and he said ‘what’s the matter Barbara?’ and I said ‘I feel dreadful, I just don’t know what to do, I feel dreadful’. So he went and called my managing director and between them they decided the best place for me was home. I couldn’t drive myself home, I was so ill. They took me home and I stayed at home for a couple of weeks. I just had a conscience, worrying then about work, worrying about John, just worry, worry, worry. I finally came through it anyway.
"I’d not realised until recent times that it’s always going to be a battle of some kind for John. There’s always going to be something that we are going to have to defend for him and in that case it means that my stress levels are going to go up and down. It means that as I get older it’s not going to get any easier. My age isn’t going to help make it any easier but in the meantime all we can do is carry on and face each thing as it comes up so John gets a good quality of life, as best as we can.
"What are my biggest worries and stresses? Everything for John because it’s not like looking after him and then its’s ok and all settled now. There is never a full stop and the only end is that one that we all experience no matter who we are, that wooden box. And so there will always be the worry, there will always be the stress. I can understand why some people can’t do it, some people walk away from it. My mother did that when she put John in care when he was only a baby, it must have been awful for her, I have nightmares about it to this day. Some people do it and other people say ‘you shouldn’t have done that’, they are not there, they are not walking in their shoes. That is what this is all about, if you walk in someone else’s shoes for a day, or two, or more I think you might have a different attitude to how you view that person."