'Never judge a man until you have walked a mile in his moccasins' – Native American proverb.
Derbyshire County Council and partners including Derbyshire Carers Association, the BME network, Creative Carers are all working together on the Walk a Mile in My Shoes Carer Empathy Project.
Plans are afoot to launch the project during Carers Week in June with a series of roadshows around the county plus an online campaign.
You may have already heard that the project centres around recording local carers talking about their caring roles which will then be edited into ten minute audios clips. If you haven’t already heard about the project you can find out more here.
The idea for the project was borrowed from the Empathy Museum who wanted to promote empathy by encouraging people to find out what other people’s lives are like and what experiences they face. They did this by asking people to, literally, walk a mile in someone else’s shoes while listening to an audio recording of them talking about their life. They collected the stories of all sorts of different people including Syrian refugees, a war veteran, sex workers and a neuro surgeon.
The Derbyshire version
For the Derbyshire version we decided to narrow the focus and concentrate on the stories of unpaid carers. And we won’t be asking people to put someone else’s shoes on while listening to the stories either! But we have asked the carers involved to choose a pair of shoes that they feel represents their personality and let us take a picture of them to help promote the project.
The local carers who’ve already recorded their stories have all had unique experiences of caring, so all the stories are very different. They’ve told us about the good, the funny, the difficult, rewarding and most frustrating aspects of caring, some have given advice for other carers or shared their hopes for the future.
But what’s the point?
- Celebrate local carers
- Help local people understand what carers do and appreciate the contribution they make – in turn it is hoped this leads to better support and empathy for carers from people in their communities
- Give local carers the chance to have their say
- Help people who support a loved one to realise that they are a ‘carer’ so they can access information and support
- Help health and social care staff (particularly trainees) understand the needs of carers so they can better support them
- Help carers realise they aren’t alone and that main other people have similar roles
- Find out what works for carers – what helps and where are the gaps?
One of the carers who has shared their story for the project is Barbara. Since she was a young girl Barbara has helped support her younger brother John, who has Down’s Syndrome after their mother struggled to cope with John’s disability. John now lives in a residential care home but Barbara explains how her caring role hasn’t ended as the worry and responsibility will always be there.
"It was obvious from the start when John was born that he had got downs syndrome, and how bad it was we didn’t know obviously until he started to grow older. It was a shock for my mum, she didn’t deal with it very well and she was also a single parent. I was the eldest so I took on a lot the care and support for John because she never seemed to get to terms with it.
"John 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! But never the less, the Down's Syndrome was something she just couldn’t handle.
"Anyway when I got married and left home she promptly put him 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 I needed. So It was a double-edged sword for me, my siblings seemed to be happy enough to accept the situation but I was always worried about John because I knew from the odd visit my mum made, that John wasn’t having a happy time. When I got news of what was happening to him I felt very upset, very upset and it tormented me for a quite a while till he came home.
''When he finally came home, yeah had a few problems but it was happy, happy times more or less. Then my mother died and we were back to ‘what are we going to do with john time'.
Barbara then had to try and find a place where John could be happy, and succeeded when she found a small care home for him living with 5 other people with learning disabilities who he got on with ‘like a house on fire’. But then after a few years the husband and wife owners of the home retired and Barbara had to find somewhere else for John to live. She along with the other families managed (after a battle) to keep all 6 of the group together and found another home but it wasn’t plain sailing…
"At first it was lovely they seemed as though they were trying to do the right thing and provide the correct care. But then I think they were new to providing care for learning disabilities and they couldn’t get the staffing right, the care right and there were numerous problem medically. We were worried for John, he was having health problems so again we worried. We were taking him to numerous appointments for either this, that or the other. At that time my partner and I were still in work, he owned his own company but of course he’s got to be there to run it. I worked for someone and of course I was supposed to be in my job because I was a sales and marketing manager and 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 what he needed.
"I remember I had one particularly nasty event happen and I spent so much time between hospitals and doctors and one place or the other trying to get something corrected that had gone wrong that I think I had a mini breakdown myself. I remember driving one morning and I got to the crossroads near where I worked and I should turn right, it’s 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 I couldn’t even take my coat off. And I’d left my door open and someone walked down the corridor and did a double take and came back and I was still sitting at my desk, I hadn’t touched the 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. But I couldn’t drive myself home I was so ill. They took me home and I stayed home for a couple of weeks, it was just constant worrying then about work, worrying about John – just worry, worry, worry.
"I finally came through it anyway. But I didn't realise 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’re 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 easier because my age isn’t going to help me to make it any easier. But in the meantime all we can do is carry on and face each one as they come up so John gets good quality of life. As best as we can.
"I can understand why some people can’t do it and they just walk from it, my mother did that when she put john in care when he was only a baby, it must have been awful for him, it must have been awful – I have nightmares about it to this day. It must have been awful for him but some people do it and others say ‘ohh they shouldn’t have done that’ but they're not there, they’re not walking in their shoes. That’s what this is all about. If you walk in someone else’s shoes for a day or two or I think you might have a bit of a different attitude then to how you view that particular person."
You’ll be able to hear the full version of Barbara’s story, in her own voice when the project launches in June.
There’s still time to get involved with the project. We’d love to hear from more carers who’d like to share their stories.
You could share a day in your life, you could share your life story like Barbara did, or it could be a question and answer format if you’d feel more comfortable.
Your caring role could be hands on and practical, it could be supporting someone with a mental health condition or addiction. You could tell us about a caring role you had in the past – we’d like to capture a full range of stories. We welcome all carers to share their stories but would particularly like to hear from some male carers.
You’ll get control – before the recording is edited you’ll get to approve the parts of the recording that make the final edit. We’ll give you a transcript of what you said and then our ideas on which we think should be included but you will get the final say.
If you’d like to get in touch, email firstname.lastname@example.org , use the contact form or you can give us a ring on tel: 01629 531310 (ask to speak to Alex or Ruth).
If you work with carers we’d be grateful if you could promote the project to the people you support.
Some organisations have recorded stories for us and if you’d like to do that we’d be very grateful. We know it’s sometimes easier for carers to speak to someone they know and trust. Please get in touch and we’ll explain everything including consent forms, pictures of shoes and audio formats.