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Carers' Stories
My name is Gloria and I would like to tell you my story
A big part of the reason for telling my story is to encourage young adult carers to recognise their role and to get support as soon as possible, to ensure that they are able to maintain a good quality of life for themselves whilst supporting the person with care needs. It was many years into my caring role before I realised (or was told) I was a carer and until this time I had struggled alone.
I do not want this to happen to others. And so I tell my story.
My life as a carer started in 1994 when my son was born with a serious medical condition. I didn’t consider myself a carer, it was just my duty as his mother to look after him. For a long time I tried hard to ignore that he had a disability.
I did not want him to be treated “Differently” and I did not want him to be “Labelled”.
I also had other children to look after.
When my son was 13yrs, his father and I split up thus making all of the caring role my responsibility, forcing me to leave my job that I enjoyed so that I could care for my son full time. This involved giving him his daily medications; helping him to get dressed and ready for school, frequent doctor appointments and hospital visits. Due to his condition, he did not have a normal school routine. Some days it would be okay, but other days would be very difficult due to his health. Often during the night he would have problems resulting in needing to call an ambulance. So many night with no sleep. It was exhausting. Sometimes he would sleep perfectly at night, but the following day he would be really ill at school. It became a weekly routine. It was
only after another operation, with my feeling total desperation, with no money and no job and all of his care on my shoulders, that a friend of mine FORCED me to realise I WAS A CARER. She supported me to apply for DLA and helped me to fill in the forms. I had never realised I was entitled to any financial support for my son or myself. A part of me knew I needed help but I was in denial. I thought I was the only one able to look after him properly. Caring for him gave me a distraction from the difficulties in the rest of my life. I didn’t want to admit I couldn’t cope alone.
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By this time, I had been a carer for 13 years but I had never realised it. I had never had support or help from anybody. This was the hardest time of my life. I DO NOT want other carers to go through this.
At the same time as claiming DLA I was given counselling where I was advised of Camden Carers Service. It was incredibly helpful and since then my life has changed completely. I would not have survived until now without their help. Until I got support as a carer, my self-esteem was very low. I didn’t do anything in my life for me. I didn’t go out with any friends, I didn’t go to the cinema, I didn’t go on holiday, I didn’t go to the hairdresser. I didn’t do anything for myself. I was totally isolated. I could feel my life deteriorating. The only reprieve I had was when a mum from school would invite me to a café for coffee, which she paid for otherwise I could not afford to go. Little by little, with the support of Camden carers I started to recover my confidence and I began to understand that I was important too. It was necessary to look after myself, not only to be able to support my children properly but also because I deserved to have a normal and happy life. I had been so long in this role on my own that I was physically and emotionally exhausted. Camden carers helped me learn to balance emotions and to recover my self-confidence. They supported me in all aspects, from filling out important forms for DLA and medication, to counselling support, nutrition and housing. I was invited to participate in a variety of activities, where I was able to socialise and made new friends.
Even though I had lost my job that I had thoroughly enjoyed, I was now enjoying painting, pottery, yoga, pilates and many other activities provided by CCS. I am now feeling so much stronger in myself that I have also volunteered to work with a dementia group. That was a wonderful experience, not only in learning and giving my time to others, but also in the knowledge that I am now this new, brave, capable and strong woman.
Yes I am a carer, but that does not define me.
~ I am ME and I am a carer ~
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Names have been cahnged for privacy
Sushi
I’m going to be thirty next month. I’m a personal trainer, a film-maker and a photographer. I’m also doing a diploma in animal care at the moment, because I want to get into that more. I also do peer-support mentoring for the NHS. I dabble in those few things; I see looking after my mum as a 24/7 thing. I just like to be busy, to stay active and keep moving, which is the opposite of my mum.
From my perception, from a young age I’ve always felt a bit different; the way I respond to things, the way I react and the way I rationalise things or can’t rationalise things. When I was young my aunt passed away, my dad passed away and my grandad passed away all within a few years of each other, so that was the catalyst for my mental health. I was first diagnosed with depression, anxiety and PTSD. When my dad passed away my mum’s disability worsened both mentally and physically and that’s when me and my sister became carers for my mum. We were looking after her physically and we would then offer emotional support as well. When I was about twenty-two, I was diagnosed with Borderline Personality Disorder which was the best thing that ever happened to me. To be given that diagnosis and a list of things I could do to help myself, whereas before I was completely in the dark and I had no idea what was wrong with me. That diagnosis changed my life.
After university I came back home to look after my mum and we spread the commitment over the three of us: me, my sister and my sister’s partner. We would all look after her. It was difficult but it was manageable. I still felt like I could function, get a job, go out to work, socialise with people. My sister moved out this January, it’s September now, so it’s been a while and it’s just me on my own, completely looking after my mum. So, what was once shared between three people is now on one person and it’s very difficult to be her carer and to have been her carer for so many years and it does affect my mental health a lot. It affects my ability to function in society the way that I want to. It’s hard, but at the same time she’s my carer too and she’s able to offer emotional support and financial support if I need help. Having the company to bounce off each other is nice, but it can get a bit suffocating because we live together. I feel as though, if we didn’t live together it would probably be a bit easier and we’d want to look after each other more.
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It’s really difficult to do anything for myself, it’s difficult to do things in a smooth and peaceful way. If I do want to do something on my own and I do want to go out there’s a big thing around it at home with my mum. I can never just go out and do something nice for me and have some respite because I am always
thinking about her, If I’m not thinking about her I’ll be getting text messages from her asking for me to pick things up. I’m still working and still caring even when I’m on my time. There’s never really time for me, I don’t feel like I have any time of my own. I feel we need to have a more concentrated connection, less often. Instead of these weird diluted, flimsy meetings and passing’s as the week goes by.
I’d always seen adverts for Camden Carers at the doctors and I always thought they were a service to teach me how to hoist my mum out of bed if she got really ill. I always avoided the service, I thought ‘I’m not going to bother with that’ because I didn’t ask to be her carer, it was something that happened after my dad passed away and as her health started to deteriorate. I eventually decided to bite the bullet and go to the centre and since I’ve come here my whole life has completely changed. There’s so much support from the centre in so many different things like going to Kew Gardens, going to the theatre to see Wicked the musical, going to the rugby match, going to the fireworks at Alexandra Palace, also, getting a grant so that I could go on holiday. I finally for the first time in twelve years was able to go on holiday and get some respite from my mum and from looking after her. Having my key worker being able to speak to my support worker here is so amazing. To have that extra support and to have someone listen to me who knows what I’m going through because they talk to and deal with other carers on a regular basis. They know how to deal with me when I turn up crying and then I’ll leave the building laughing my head off a couple of hours later.
Before I came here I wasn’t that good of a carer and since coming here, finding time for myself and doing more self-care... it’s the age old saying, I can’t look after anyone else if I don’t look after myself first. Coming here has taught me to look after myself and my care is more effective. I can care more effectively now that I’m looking after myself and I wouldn’t have been able to do that if I hadn’t come to the Camden Carers Centre.
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Photographs and interview by Caitlin Sweeney, Sept 2019
Polly
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I’m Indian. I was born in India and I was brought over to the UK when I was a baby. My parents and
my family all still live in the midlands, but I moved to London when I was twenty-one where I then met my
children’s father. I have two daughters, Sushi is the youngest. I was very involved with the community in
the past but then I have suffered with a lot of conditions from the age of twenty-five onwards.
My daughter’s dad is from a different background and I was lucky that my parents accepted him and so obviously my children are mixed raced and that’s probably brought enough problems with them trying to fit in.
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When my partner died, which was very sudden, I was a widow at thirty-seven and I became the sole carer for both my daughters. Both of them have a mental health diagnosis, as do I myself. We all suffer from depression, all three of us have a personality disorder, so life is pretty mercurial in our household. It’s always been kind of like one person’s okay enough to do the things that need to be done and the other two are struggling, then someone else will come up where the other one will go down as well. So, it’s always been interchanging, it’s never been that all three of us are in a good place. It’s always two at a different place to another. It’s been a bit of a struggle for the last twenty years.
As long as I stay adaptive I’ll get through anything. I use the traumas and I break down barriers and that’s all I can do, but that’s what I’ve been doing for a long time. It was unheard of for an Asian girl to leave home without being married because that was the only route out of the family home. I had very nice parents, who wanted me to be married, but I showed them a different way. I came to London and my eyes opened, my partner broadened my horizons and showed me so many different things. If you’re lucky enough to get someone like that in life, you hold on to them. I have my faith and I was very involved with the church and as a family we went to church. I was involved in my community where we lived and I was chair of the community centre. I was working at the school and the church, so everybody knew us in the area. We’ve been caring for each other. I’m very aware as a parent that I want my daughters to get on with their own lives, but at the same time the roles have kind of reversed where I need care but my daughters can’t do it because of their mental health and it makes a very difficult dynamic at home. Since they lost their dad, we’ve never recovered. We kind of just bang into each other constantly. It just means that we need to have a lot of difficult conversations.
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As a mother I want my daughters to have a life, but as an ill person I want them to be around because having been with people most of my life and coming from a big family, to then go to nothing it’s quite a shock.
It’s a struggle, and also because of my partner dying I was not aware of how difficult that period was going to be when you lose all your friends. People just don’t know what to say to you, they just stay away and before you know it you haven’t seen your friends for years on end and they only live up the road! You then sit back and you think ‘nobody cares, nobody wants to help me’ and you have to try to get out of that position. I’m a very independent person, who has done everything for myself and I built up my support network when I moved to London and when I had my children. It’s very difficult to ask for help, it’s really really hard to ask for help. My daughters are of a different generation to me, they’re all about ‘if you need some help you have to ask’ but if I’m mentally ill and in a deep depression I don’t know what I need. So, how do you ask when you don’t know what you need? It could just be something simple like, I just need someone to help me clean my feet because I can’t reach them, but it’s like I don’t want to impose because I’m still thinking like a parent and they’ve got to go and make their own way in the world. At the same time, I don’t want a stranger to come and do things that are personal, or to take me out. But Because of our mental health, I don’t trust my daughters when I’m out and about because if they have an episode I’m going to feel stranded, which has happened in the past and it’s very hard to trust someone else with your safety. But that’s what I’m trying to learn, I’m trying to trust other people and my family, plus they’re my only family that I have here because all my other family are miles away. It’s not like they can just turn up here if there’s any problems. So, I do rely heavily on my daughters.
We have lost the mother-daughter relationship. It’s just becoming more and more like being a carer. It means I try to do something and I end up pushing myself and my body to its limits and then I’m not fit to do anything else for a whole week.
I’ve become very isolated; I think the three of us became very isolated in our own little bubble because it feels like nobody cares. Nobody wants to help us. I still feel that when you need something you are going to have to go out and find it and build your own support network because nobody’s going to do anything, give you anything for you. Sometimes the depression stops you, it can make life feel quite hopeless and scary. You don’t really see a future, it’s a big wall to bash down to create some kind of future for ourselves.
I started out doing lots of voluntary work because jobs were very sparse at the time when I left school. I also believe education never stops and I always dipped in out of things throughout my life. I’ve been a minister for twelve years now, I was ordained in 2006, that was something really different. Before that, I was a part time Esol* teacher for seventeen years. That was nice because it was like going to different community venues, I was meeting lots of different refugees from different countries.
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I’ve tried lots of different things, I suppose now it would be great to do something different, but also connect with my daughters, as my daughters. We need something that we do together. At the moment, we haven’t got anything because they’re busy all the time and I know that they’re trying to gain a better life for themselves, but I suppose I feel I’m being left behind. My eldest daughter moved into her own home earlier this year, so now it is just Sushi and me.
Sushi has so many things she’s involved in. I find it difficult to process my day and my routine. She’s young and her routine is set by when she’s working, but for me when I’m not working I don’t have any particular routine but I do have a routine set by my medication. I suppose that I assume that everyone’s going to understand my illness, but they don’t. Sushi’s been supported for the last year, I hadn’t attempted to get any support to this point so hopefully now I will make use of it and hopefully something will come from it. I just want to create a moment in a day when we get together when we can just be like mother and daughter instead of just being carers for each other. I would like to do some of the stuff that we used to do in the past.
As co-carers, it’s a very hard life and if anybody can help us, like the carers service, it just gives us a little bit of lightness in our life and I’m grateful for that because we live in a very dark world a lot of the time. We love each other, my daughters and myself. They are good girls, I couldn’t wish for better, but it’s not easy at all, especially without any support. Hopefully we will feel supported enough by the carers service to make new lives for ourselves.
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Photographs and interview by Caitlin Sweeney, Sept 2019
*English for Speakers of Other Languages