Tuesday, 15 November 2016

My Confession: I don't need a Carer



I have a confession to make; something that I feel like I haven’t admitted to you guys before.
I can’t run.

I know that you have probably all stopped drinking your cups of tea and have left in absolute shock; your mouth is left wide open in a gobsmacked expression blanketed over your face.
I. Can’t. Run.

I must therefore mean that I am dying and you should all enter a stage of mourning. 

In reality there are elements of truth in this statement. I am disabled, I can’t run and I am slowly dying (much quicker than you are but still slowly) However, I am not to the extent that might be implied. So why is this necessary to exaggerate?
The fact that many of you have read about posts that I mention about my muscular dystrophy or the fact that I fall over or get into circumstances where I leave myself vulnerable is clearly a ridiculous and irrelevant point. Or, the fact that many of you met me in person to know that I am clearly disabled but I somehow manage to do all that I do with the boys and home education.
Sometimes people miss the obvious even when they know me as well as they do. There are also times that people make unnecessary assumptions within labels and context.

When I say that a friend (Ben) has moved in to help me with day to day living as much as the emergency situation that is EXACTLY the case. There isn’t anything untoward, suspicious and secretly implied within that statement. So the real confession is that i don't need a carer!

He is there to help NOT care.
So why do so many people believe he is now my carer?

It isn’t just one or two in one group but in many; I have had people in Church, Family, Work, on the blog and online calling him my carer. Even Ben, much to my annoyance and constant argument, calls himself my carer!
I am in receipt of disability living allowance or, now that it has changed, PIP. For anyone who doesn’t know how this is broken down, the allowance is measured by statements and each statement has a valued worth. For example: “can feed themselves independently. 1 – 5” in this scenario I score a 2.

I can make food, I know when and if I should eat, I can open (slowly) canned food and can raise a knife and fork to my mouth and nutrition is in my body.  I do, however, struggle if I am lifting a large and full ovenproof dish from the bottom shelf of the oven and I can’t reach food from the top shelves in my kitchen. Due to these points I have an increased score.
The thing is I don’t see that I tick the box of needing someone to make food and feed me. Similar things can be said about my toilet and physical hygiene or about my ability to dress myself; some of the minor activities can be difficult but it doesn’t mean that I am incapable of the overall task and need care.

Definition:
incapacity

noun: incapacity; plural noun: incapacities
physical or mental inability to do something or to manage one's affairs.

"they can be sacked only for incapacity or misbehaviour"
synonyms: disability, incapability, inability, debility, impairment, indisposition, unfitness; More

Or,
Carer

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.
The thing is that I CAN cope without their support it is, sometimes, just difficult. If a wife has had a massively busy week both at home and at work and she asks her husband to make dinner does that mean he becomes her carer because she is now incapable within that moment to do cook? Or, would we see that he is just helping because she is finding that more difficult at the moment?

I see my life like that. I cannot run. If I wanted to then I know that I wouldn’t cope without one or more people physically helping me. So I am more than happy saying that I am incapable of running but I wouldn’t need a carer to run. There is a distinction.
Ben is more a living home help and to be completely honest the only reason why he is living with me is not because I need that level of care but because he was declared homeless! I had an ability to house him and he has the ability to free up some hours without me struggling. We are not, therefore, accountable to each other or in care of each other.

You don’t need to talk to him instead of me. You do not need to praise and encourage what a great job he is doing because he’s doing a “noble” job. Should I get a slow motion standing ovation because I house a homeless person, fed him for the first 6 weeks because he had NO money and I allowed him to wash and clean himself? No!
I AM disabled and I know I need help. Help doesn’t mean I am incapacitated though and I need a carer. If Ben isn’t helping me at any point I am more than happy to kick him out and continue to do what I always do; in the meantime I am going to enjoy some respite instead of killing myself quicker…..or that is the hope.

1 comment:

Emma Day said...

It's a shame that you have to clarify this to people, but sadly most people are quick to judge others levels of ability and disability. There are so many misconceptions about disabilities and muscular dystrophy in particular is so complex that even when you explain it to people, many do not understand. Well done for writing a post which i imagine was probably quite frustrating to write. X