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The dynamics of caring for your disabled brother

loaf_and_luceloaf_and_luce Member Posts: 2 Listener
edited March 2020 in Guest blogs

I’m Lucy Brown, I have an Instagram account called @loaf_and_luce where I share the general goings on of my life with my older brother Jamie.

Jamie has a learning disability and is a wheelchair user, because of this, he needs support with all areas of his life. Jamie is ten years older than me, so I’m lucky that I’ve never known a life without him. There was even a little while where I thought most people had a disabled sibling, it blew my mind when I realised having a Jamie in your life was a bit of a rarity.

Being a sister and carer

Growing up there was never an assumption that any of Jamie’s siblings would look after him, but around 4 years ago mine and Jamie’s relationship changed. He moved out of the care home he’d been living in previously and now had his own place. He needed to have tracking put in, so we went out for the day whilst it was installed. I’ll never forget standing at the bus stop, realising this was the first time I’d ever been out with him alone. We had the best time.


Moving towards providing some support for Jamie was a slow process, but without it I wouldn’t be able to go to garden centre’s for cake and coffee just us, or chat with him about whatever I want with the knowledge that nobody is listening in. Jamie’s non-verbal so he’s sure to keep my secrets!

I look after Jamie much more now, when we’re out and about I have to help him, I’m not sure where I draw the line between providing care and just being a sister. Is giving Jamie his cake or pushing his wheelchair providing care? Perhaps it is, in the technical sense. To me it’s just a part of our relationship, it hasn’t always been, but it is now and I’m so glad.

The perceptions of caring for a family member

The hardest part of looking after Jamie, without a doubt, is that I am forced to continually assert that I enjoy Jamie’s company. Not in a feel-good able saviour way, but in a genuine down to my bones adoration of that man. He is without a doubt one of the best people I have ever met, although I might be slightly biased.


The persistent looks of pity or admiration for ‘what I do’ when we’re going about our daily lives is so uncomfortable, not because I want everyone to love Jamie like I do, or because I want everyone to suddenly run into a career of caring. It’s not for everyone, and that’s okay, I could never be an accountant for example. The discomfort and unease stems from the knowledge that those people see me out with Jamie and they perceive an imbalance which just isn’t there.

Caring for Jamie is the easiest thing in the world, the perceptions are not.

I find the dynamic of relationships which include care fascinating, Jamie can’t express his opinions verbally, but I reckon he’s quite keen on me sticking around. I’d love to hear more stories of relationships, couples, siblings, children and parents who provide care for one another.

You can follow Lucy and Jamie’s adventures on Instagram @loaf_and_luce.

How does it impact on your relationship with one another? What are the perceptions you get when out? Let me know in the comments below!

Replies

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    I feel the same way. Providing care is simple, dealing with the system is not easy. What challenges and issues did you face over the years? 
  • loaf_and_luceloaf_and_luce Member Posts: 2 Listener
    Our mum is probably best placed to answer this but needless to say a lot!! Nowadays things are much easier because as Jamies gotten older external involvement has gone down so there’s less balls to juggle! 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Interesting read and how happy you and Jamie look.....such a special relationship.

    My hubby was my sole carer for the first 11 years of my disability. I have PPMS and it progressed so rapidly, that it took our breath away!

    But we`ve had outside carers as well for 8 years now.

    I try to keep my hubby`s input to my personal care as limited as possible.

    We`ve been married 48 years on 25th.  My disability has definitely come between us, but we cope the best we can.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    A great piece @loaf_and_luce! The relationship you have is so lovely to see!
    Community Partner
    Scope

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