Case studies

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Alana

My name’s Alana. I’m 17 and I care for my mum and sister. In my care role I sometimes cook, clean, I explain things like things that doctors have said and if I don’t understand that then I have to go away and try and simplify that. I do DIY, a lot of things really. I sort bullying out, situations…discipline my little sister ‘cause she pushes my mum’s boundaries. A lot of things really. My sister’s 11. She has dyslexia and a lot of learning difficulties. She finds it a challenge with confidence and homework and stuff like that. It has become challenging through the years. I started the care role when my mum and dad lived together because my dad’s also got a lot of difficulties. I think when my dad left it came as an automatic thing; I had to care for them because my mum doesn’t cope very well in certain situations.

You have your highs, your have your lows. You have your challenges. I think you just take them as they come. I mean, some of those can hit you really hard and some of them are just like “well, that’s happened, oh well,” and some highs, you take them as they come.

Well, with like, with my mum, she’s not very good at spending time with me and my sister. She’s took us out places, we’ve had rewards, we’ve gone on holiday and stuff like that, and you’re really high, and then you’ll have…we’ve had our low points as well.

Support-wise, I have…well, we come out once a month with Adult Young Carers. If you need the help, it is here. I do have at the moment… I do meet one of the workers of Young Adult Carers outside and we meet once a week to talk because at the moment the situation isn’t good at home. It is helpful that support because if I didn’t have that support I don’t think I’d be here because it’s…it’s just…it’s hard…hard, life is really, really hard.

At college, I’m doing Hairdressing Level 1 and it’s really good, I enjoy it. I’ve just got my qualification yesterday, so I’m getting good at that. I’m going into Level 2 in September and hopefully Level 3 as well.

College is really good; I get all the support I need. College are understanding that I am a young carer and it does become a situation ‘cause I have to tell them because I have my A-2-A card. I have to tell the because really, it’s hard being in College trying to tackle work and trying to go home and do a care role. I came really far behind in my work and I’ve been late a couple times which…they haven’t reduced my EMA because I’ve been able to have my A2A card, which is a relief.

In the future, I’m hoping to be a hairdresser and somehow intervene, some kind of volunteering because I want to go to work abroad. My cousin did it and I thought I liked the idea of it, I like the idea of a challenge.

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Alana is 17 years old and cares for her mum and sister. She helps with practical tasks and supports her mum and sister in understanding situations. Alana started caring when her dad left, helping her mum cope and taking care of her sister including attempting to resolve issues on behalf of her sister in school.

Alana goes out once a month with a young adult carer group and receives one-on-one support. She is studying Hairdressing in college, has just passed her Level 1 and will be progressing onto Level 2.

She does find it difficult studying while caring, she mentions her A2A card and EMA as things that help (see box below for more information).

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James

Ok, so my caring role began properly when I was 40, I’m gonna be 46 in July. My mum was diagnosed with Alzheimer’s when she was about 75. She’s 80 now. She’s recently gone into residential care because the disease and the illness has progressed to a point whereby she needed to be in a safer environment than independent living.

How it changed my life I suppose was extraordinary. I mean I literally went from having a very busy career, working quite hard in my 20s and 30s, following college and what have you, the usual route, to finding myself in this position whereby, you know, suddenly this terrible illness had arrived and we needed to be there for her. She lived about 35 miles away from me initially, and I would go every weekend and I did that for about 20 months, taking food. One of the manifestations of her illness was that she stopped eating, so it was very important on a practical level that she had food arrive at the house and to try and encourage her to eat. Of course, what happened was, she then…I would go away, and she wouldn’t eat during the week. So, anyway, after about 20 months, as I say, we then decided to move her very close to me so she moved into a bungalow about 500 yards up the road and I worked then full time for about 2 years, but even that wasn’t enough, I needed to spend more time, I think, than the full-time job allowed me to. So, a year last March, I took voluntary redundancy after 15 years in one organisation that I’d been with and really to allow me more time and I was very lucky. I secured a post in NEWCIS shortly after for part-time work and that allowed me then to be able to take her for hospital appointments, to doctors’ appointments, just do the practicalities of day-to-day whilst also trying to have my own life a bit with my own, you know, kind of, relationship and home, etc. But it was a struggle, even then it was quite a struggle, because I think with any chronic illness which is terminal and only going one way, inevitably it gets worse, it gets harder, so things didn’t get easier, they became more difficult, I suppose.

So, I suppose, yes, things changed for me. One of the things I did do though when I left full-time work, I thought, well I did a degree back when I was, I don’t know, gosh, 25 years ago or so when I first graduated back in the late ’80s or early ’90s, and I’d always wanted to do a masters degree so by going part time it enabled me to then sign up to a course locally. So I’m now coming near the end now of my first year of my MSc in Psychology and that’s been a great help for me because it’s been something new, something that I wouldn’t have been able to do had I been working full time, something I’ve really enjoyed and also a very good distraction because it’s kind of taken my brain or my thoughts in another way. But it’s kind of odd to be a student again at my age, and to be back in the, you know, sort of essays and exam kind of world, but I find it quite…strangely quite comforting and quite calming. Oddly I find education is a soother rather than something that perhaps the first time around I was very, you know, kind of anxious about and wanted to succeed in and, you know, it was all about getting a job and getting a career. This time it feels very much about doing it because I’m enjoying it and doing something that, you know, is for me really. So I do that one day a week; I work here part time. And, yeah, to be a carer was a strange thing; I still am a carer insomuch as that I have power of attorney for my mother’s health and welfare and her property and finances and I visit her as often as I can. But it’s different now, now that she’s in residential care, it’s a different change. But it was exhausting, I can’t really describe it in any other way than it was very all-consuming and to the point where I had given up on so many parts of my life really, and I didn’t mind. The awful thing was I became entrenched in the illness as well, as a carer you do, you kind of…it takes over you as much as it has the person who has become ill as well. So, it’s only now, and it’s only a few months in, that I’m starting to kind of, you know, take small steps to get back into ‘ok this is about my life now and I’m, you know, in my middle years still so I have these things to do’.

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James is 45 years old and cares for his mum who has Alzheimer’s disease. James’ mum has recently gone into residential care as the disease had reached a point where she needed to be in a safer environment.

Caring changed James’ life significantly. He had a busy, successful career but as his mum’s illness progressed, she moved closer to him and he found he needed more and more time to provide care for her. To be able to do this, James took voluntary redundancy and found part-time employment with a local carers’ service.

Having left full-time employment, he was able to begin an MSc in Psychology one day a week. James finds -studying calming and comforting, and an important distraction.

Figure _unit2.1.1 Figure 1.2 (model photo used for illustrative purposes only)

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Suzanne

My name’s Suzanne and I help care for my brother who’s seven years younger than me and has schizophrenia. We have…our family has known that Steven had mental health issues for about 15 years, and he has lived with different members of the family, but his schizophrenia progressed and was actually diagnosed in 2010 and at that point I was able to go to America where he’d been jailed and he became homeless to pick him up and care for him actually without the knowledge of my parents because there was a big fallout when he actually was jailed.

I think the positives of caring are actually developing much stronger than normal perhaps. I suppose it can work the other way but for our family certainly, we have very, very strong familial relationships. My sister and I have been brought closer together by this, also myself and my mother. My father and I, although we’ve always been very close, even though there’s 3000 miles away in distance between the two houses, we communicate on a daily basis and it’s not just about Steve; a lot of it is about sort of how I’m supporting Dad, or what’s going on in my life, so that has been a real positive because if we hadn’t had the focus of Steve’s development and wanting him to get the most that he can get out of life, we might not have that closeness in relationship; we’ve been through a lot together.

Spending the time with him, my brother’s personality was so changed; I knew that he needed to be treated differently. That was the hardest part because I felt quite alone. Yeah…

Being a carer, I’ve developed a really good feeling for my own inner instincts: I’m a great researcher…I had to do a lot of research; good at developing leads for different treatments and care options and following those up, gathering information and disseminating that to other people in a way they can understand. And I’m not afraid to say, “well actually, I don’t agree with you”, even if the people I’m speaking to are so-called experts: “have you looked at this? have you looked at that? why?” Especially around Steven’s medication, because it took a long time for us to find medication that didn’t have so many side effects that he couldn’t function, so that was, you know, that was really tough.

The support I had at NEWCIS was fantastic. I knew that when I actually did start looking after my brother full time that I was a carer, I knew that, and I was able to hold up my hand and say I’d like to engage with the local carers charity and see what support I could get. They were fantastic. I was able to get free counselling. I was able to link into the training here, which I found really beneficial, especially around stress management. And my long-term friends that I’ve known since my kids were very young, were fantastic. Really, they had met my brother before, when he was well, really wanted to be around my brother, you know, coming round to the house, going to the theatre, whatever. If his behaviour was unusual, they just rolled with it. And it was great to be able to actually have a laugh! My children also were really supportive of their uncle. My children were all in university at the time and again, they’d known their uncle when he was well. Steven had a totally transformed personality when they met him when he was coming over here to live, and they engaged with him, talked to me about how I was feeling, and really empathised I think.

I really believe in the work that NUKIS does about carers developing their talents, that their whole life isn’t totally focussed on their caring role while they’re doing the care, everybody needs outlets. I can still talk to my friends about my brother’s progress; they kind of went through that with me.

I’m a writer and a community worker, and I have a degree in English that was gained—part of it was gained in the States and part of it was gained here. And then I also did a degree in Science and Countryside Management and I was a ranger for quite a while in the mountains near here. I’m also a creative writer and in the past, I’d say about seven years—since my boys started to leave home—I’ve been having more and more work published and I think that’s where my future lies, really.

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Suzanne helps care for her brother who has schizophrenia. Suzanne feels her caring role isn’t just about caring for her brother but also about supporting other members of her family including her dad.

When she first started caring for her brother, Suzanne found it difficult and felt quite alone coming to terms with changes to her brother’s personality.

Suzanne feels that as a carer she has developed a greater awareness of her own instincts and feelings, as well as developing independent research skills. She also feels that caring helped her to question and challenge people in positions of expertise or authority. Five years on from her brother’s diagnosis, Suzanne has found that in many ways it has had a positive impact and that her family has been brought closer together.

The support from the local carers’ service was important to Suzanne, including the provision of counselling and training.

Suzanne is a writer and a community worker who sees herself in the future spending more time writing and having more work published.

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Christine

My name’s Christine. I look after my son who’s 19 in September. He has Duchenne Muscular Dystrophy and other complications with it, such as cardio myopathy, inoperable scoliosis due to his cardio respiratory function and complex learning difficulties.

I’m naturally a caring person anyway, very, very caring, very touchy-physical, kind of cuddly kind of person. Qualified nursery nurse, which I fell into at school because I wasn’t academic so I ended up looking after the pre-prep children, taking them swimming and you know spending time with them in the evenings and stuff like that so I kind of fell into nursery nursing. Love nannying, just being a mum really, substitute mum. Then had a long time to wait to get married and to have a child and, I don’t know, I find it very hard to call myself his carer because I’m his mum. Part of that has led us to decide that he’d be best off going to a residential school—college, rather—then coming home to us for holidays.

I think the lowest point is the isolation and the loneliness, I will take any amount of that myself but I don’t want my son to have it, and how hard it is to look after a child, especially a teenager who uses a wheelchair and the lack of provision for social care out in the community. There isn’t anything, you just become a recluse and its not fair. It’s my son, he’s kind of, he’s the wind beneath my wings because he’s taught me so much about my life, it’s unbelievable. He’s taught me more about me and everybody else in the world. Problems and concerns over my health, physical and mental really. Emotional, really more than mental, but they’re, well, they’re manageable now. Yeah…I’m not sure…it’s difficult because it’s only three months and he’s off to college and it all depends on how it goes really, so trying to keep positive, but knowing it’s going to be hard. And just thankfully that my husband’s…we’re still together…yeah, that we’re still together and we’re working through it together. Everybody keeps talking about this “empty nest syndrome” and, yeah…it’s something everybody has to go through, whether you’re caring or you know, if the child is going off to university or on a boat to live on the other side of the world. It’s all got its traumas, doesn’t it?

The skills I’ve developed are empathy, I think I’ve a very sympathetic person but I think I really do have empathy now. I’m determined. I’ll stand up for him. I can put others before myself. Usually I’m not afraid of saying no…I don’t know what else to say…I think I’m a stronger person, really. Yeah…I’ve been through the mill. I’ve done it myself a lot of times but somebody’s reassured me and says that’s what we all do.

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Christine cares for her son who is 19 and has multiple and complex disabilities.

Christine considers herself a naturally caring person; she’s a qualified nursery nurse, and enjoys looking after children. She finds it hard to call herself her son’s carer because she is his mum.

The lowest point of caring for Christine is the loneliness and isolation, not just for herself but also for her son. Christine is frustrated with the lack of provision for her son locally.

Christine feels she has learned a great deal from caring for her son; about herself and everyone else in the world. The skills Christine identifies include empathy, determination, selflessness and the ability to be assertive particularly in support of her son.

Christine and her son are going through a period of transition as her son will be going to residential college soon. Christine knows this period is going to be difficult but remains positive and hopeful she can work through it with the support of her husband.

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Claire

From being a carer I’ve become more understanding. I problem solve and I adapt more. I’ve had to be more understanding and I’ve had to learn to read between the lines because especially with my mother. In terms of my partner it’s quite different. My mum was quite mentally draining for me to look after but he’s more physical. So the skills I’ve used for him are different, that is, more organisation. I take him, I come in for his appointments, I have him transfer…there’s a little bit of I have to be supportive and encouraging because he gets a bit down because he struggles and his muscles…he has weaker days and things and he gets upset over it, and so I’ve had to become more…I’ve become more positive to try and say “well, look what you have got”.

Education in school wasn’t a very good experience for me; I was bullied quite badly, and that is something that I do feel strongly about because the effects of bullying because I don’t feel I really did well at school; I bunked off most of the time because of what I was going through. After school I did two childcare courses when I lived in Liverpool, and I passed them but then I struggled with my own issues and my own mental health. I did try and get a job, but I didn’t get one, and then sort of gave up a bit because I struggled with my own confidence and then I sort of met my partner so I became a carer again and that’s always been my sort of job and role and everything.

In the recent years, just before my mum passed away I was considering learning sign language, which obviously, since she passed away I’ve started that in September of 2013. I did an introduction level 2013-2014 which I passed somehow, don’t know how that happened. But I actually had to talk myself into going the first night because I was really nervous, because I was bullied in the past I was really nervous of going into that setting and that whole environment, and I passed that and I’m now doing IBSL Level 1 which I started last September and I’ve got an exam tomorrow night and then that finishes June and then, fingers crossed, I’ll pass that and then I’m planning hopefully to go back in September and do Level 2. I’ve got sort of a bug for sign language, I just need to know more so hopefully I’m thinking of doing some voluntary work because …I only do it once a week and I worry that it’s something you need to do frequently to learn it and to absorb it, so I’m hopefully going to do some voluntary work with deaf people so I can sort of practise and learn it more. The people … especially from my voluntary work, and that’s the people who’ve been through a lot or who have disability or struggled that have taught me more than anybody who’s gone to university or got his education because it’s real life, they get on with it, they deal with things every day. So I think from the carers I’ve learned quite a lot of … I think reading people is a lot of different skills. But I tend to stand up for them more than I have--in past recent years I do stand up for myself more, but I don’t like [any…I don’t like people…because] (translate as “when”?) some people will treat him differently, and I don’t like that because I wrote a poem that I published in, I can’t remember, a few years ago, about disability, and it was called “when you look at me, what do you see? Do you see me, or a disability?” and so I am quite…that’s another area of life I am interested in.

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Claire is 32 years old and cares for her partner who has Becker Muscular Dystrophy. She was also long-term carer for her mother who died in 2012. Her mother wasn’t diagnosed but held many Asperger’s/Autistic traits.

Claire feels being a carer has made her more understanding and improved her problem-solving skills and adaptability. Caring for her mother was an emotionally draining experience whereas caring for her partner is more physical.

School was not a good experience for Claire because of bullying and her home environment. After leaving school, she completed childcare courses but then struggled with her own mental health problems.

Claire has been learning sign language. She found it difficult to get to the point where she felt confident enough to go into a learning environment, but is now studying Institute of British Sign Language Level 1 and hopes to go onto Level 2.

Claire intends to do some voluntary work with deaf people so she can practise sign language and learn more. She feels she has learned most from the people she meets who have had struggles.