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Monday, 6 June 2016

Interview With My Sister & Carer

"My sister, my responsibility."
Bellamy Blake

I've been planning this post for a little while and when I saw #CarersWeek trending on Twitter today I figured now would be the perfect time. Today's post is an interview with my sister who is also one of my primary carers. It's a little glimpse into what her life as a young carer has been like. It's important for me to say this is personal to her and in no way reflects all young carers. If you have any more questions for her please feel free to ask in the comments.

Introduce yourself to my lovely readers.

I'm Eva Paige.

What age are you?

I'm twenty.

Who are you a carer for?

My older sister Sara. The owner of this blog.

What is the nature of their disability?

Congenital Muscular Dystrophy. Wheelchair user. Muscular Dystrophy's Head (...inside joke). It's a muscle wasting disease.

How long have you been a carer?

I do it every day. (The 100 reference...) I've considered myself a carer from the age of around 7 or 8 but always helped out from whatever age I was able to. Starting with small things like getting things Sara needed or picking stuff up when she dropped it from when I could walk.

What kind of tasks do you do?

I am one of Sara's three primary carers and as such I perform all round care. From simple things like making tea to more personal care such as showering and taking her to the bathroom. Also things such as getting Sara out of bed and dressing her, taking her to hospital or other appointments when needed or shopping. We also do a lot of social things together and while there is the sisterly social side to it I also meet all Sara's care needs while out. A lot of this care involves manual handling and lifting so it's a good thing Sara weighs less than five stone.

Do you also work?

I work 30 hours a week in Teleperformance but hope to go into beauty.

Do you get paid for the care you provide or any benefits such as carer's allowance?

No. My mum gets carer's allowance.

What is the most difficult aspect of being a carer?

At this moment in time I share Sara's primary care with my parents but she will be getting professional carers in the near future, all being well. It remains to be seen how this will affect my level of care input. I have taken a lead role in Sara's care since I was around thirteen and even more so in recent years and because have a tendency to feel like if I want something done right I have to do it myself it can mean I put a lot of pressure on myself. It can be very tiring. I get this trait from my dad. Another difficult aspect is juggling being a carer with school when I was younger and work now. Not just because it's tiring but also because of needing to take time off which can impact your employment. Especially as a young carer people don't understand the extent of the work you do or the responsibility. Sometimes even my parents don't fully realise the responsibility I feel because they don't feel they've placed that responsibility on me themselves. At times I've felt a lack of support and understanding in that way too.

Are there any positives?

It's great to have an excuse to get out of something. (Kidding obviously). Because we are sisters and only have five years between us I feel like being Sara's carer has really deepened our relationship. We know and understand each other better than anyone and are closer than a lot of siblings. I also feel like it has shaped me into being a more caring and compassionate person in a more generalised sense.

Tell me a story of one of your negative experiences.

I've had a lot of trouble with separation anxiety. It started when I was five when Sara went into hospital for back surgery and I stayed with my aunt. Up until that point I would stay over at friend's houses for sleepovers with no problems. However the separation from family during Sara's hospital stay was the catalyst for separation anxiety I still deal with today. It resulted in me refusing to go to school and having to go to counselling at the age of eleven as I would have panic attacks leaving Sara in the morning. Then at the age of thirteen or fourteen I began drinking with friends and found that helped my separation anxiety as well as other social anxieties I had at the time and it became something of a crutch. I grew out of drinking so much around the age of sixteen. To this day I still have separation anxiety that mixes with guilt when I'm enjoying myself and Sara's not involved, especially when she's not able to be involved.

Tell me a story of one of your positive experiences.

Just all the super fun things we've been able to experience together like staying in hotels, going to gigs or events and also getting a house together. If I couldn't perform all of Sara's care needs we wouldn't have experienced so many things or at least it would be a lot more difficult. It's also a bonus when we're able to get carer passes to events. Who doesn't like free stuff or discounts?

Do you have any fears as a carer?

Just the normal fears people have. If I get hurt and can't care anymore or if I die, what will happen to Sara? Or if Sara dies or becomes unwell, how will I cope with that? Those kinds of fears.

Have you had much support as a carer?

Not really. Mostly my parents try to give me as much support as they can but they don't really understand the kind of support I might need as a young carer or being brought up as one as they see it from their carer point of view. I feel like it's different being born into it than becoming one in your thirties. Both need support but perhaps a different kind of support.

Do you know any other young carers or carers in general?

No, not other than my parents.

Do you feel it would benefit you to know other young carers? If so, why?

Yes. I feel like I would feel less alone if I knew others that shared how I feel.

Do you feel being a carer has impacted your relationships with friends?

With friends it's hard because they don't understand things like when you just want to stay in or do nothing because you're tired from work and being a carer. They don't understand the fact that even when you're not in your actual job you're still working. My days off are different to their days off. Especially at this age when my friends don't have children or anything.

Lastly, have you got any advice you would give to your younger self?

It's okay to ask for help. Communication with Sara and other family is important. Don't bottle things up.


  1. This was a really interesting post to read and it was lovely to get to know Eva a bit more as well. I can't imagine the difficulties that must come with this, but it's lovely to see you both have such a strong bond, and the happy photos and memories of you both together are too sweet. - Tasha

  2. Both of you ladies are so lovely. I am seriously in love with whatever lipstick your sister is wearing in the first photo. I am new to your blog and I really enjoyed this entry as an "intro" to your life (through your sister's eyes in a sense)

    Genevieve - www.shipwithnosails.com

  3. Great to get to know your sister and I love how close you guys are - what a special relationship. Thanks to both of you for giving us an insight into living with disability and being a young carer. Sharing both of your experiences is great for others I'm sure!

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