Saturday, 17 May 2014

I'm A Carer Now

Cameron 18 yrs old and Me
I am a carer now and that has been one of the big changes this year. Some people would say - what are you talking about, you've been a carer for 18 years - but I've never felt like that.

I am a mum to two children and it didn't feel right to say I was Cameron's carer when I was mothering him and nurturing him just like any other mother does for their child. I am his mother. I haven't done anything for Cameron that I wouldn't do for My Little Angel so carer didn't feel appropriate. I know other parents feel differently but this is how I felt and still do.

However this year has been different. It's been very emotional for me and the realization has built up. When school finished last year we slipped into the summer holidays just like we always had so everything felt normal. Then we got to the day before school started for this year and it hit me - Cameron is no longer a child, he's an adult, he's not going to school tomorrow and from now on it's mostly just him and me. I didn't want that day to end and tried really hard to make it last as long as possible. I was very teary.

As the weeks have passed I've adapted to Cameron's new routine, his new carers, his new activities and all that these things have brought with them. But one feeling has kept growing and growing - this is for the rest of my life. I'm living my own version of Groundhog Day. This can't be right.

Just in the last week I've been able to make sense of my own feelings and I can finally put them into words. - This is wrong. I shouldn't be dressing my son, cleaning his bottom, holding his hand, changing his wet bed, taking him to dancing, etc, etc. I should be worrying about him driving on the roads, I should be questioning his choices, I should be wondering where he is and if he is drinking. He should be at Uni or Tafe or enjoying the joys of earning his first wages in his first job. He should be spreading his wings, tasting independence and planning his future. This is all wrong.

I will always be Cameron's mother but reality is that I am now his carer. I am taking care of his personal needs, his physical needs, his emotional needs, his social needs, his daily needs, his intellectual needs and his happiness needs and I will be doing this until I can do it no more. Of course My Marvellous Man is going to be doing this all as well but I am the one at home each day with Cameron.

I don't begrudge him my commitment but I wish it wasn't so. I wish I was worrying about him at 2am because he wasn't home yet. I wish I was raising my eyebrows at the decisions and choices he was making. I wish I was having deep and meaningful conversations with him about the dangers of drinking and driving, drugs and unprotected sex, his future plans. I even wish I was arguing with him. I just wish it was different and not how it is. I'm sad and I'm depressed and I feel cheated.

It doesn't mean that good things aren't happening. I am delighted with how his therapy is going, I'm delighted with what's happening at dancing. I'm delighted that he is putting his lips on my cheek and saying mmmmmmm. I'm delighted that he is happy with his carers. But I can't deny my feelings and it's going to take a while to work through them and come to peace with them but I think the hardest part has been achieved. I've figured out why I am feeling so lost and emotional and now it's time to work out how to make this work so we both have a happy future.

8 comments:

  1. I went through this stage when I stopped lifting my daughter and began hoisting her, I've been calling myself a carer since then. And next year she will leave school too xx

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    1. I guess we all meet our reality at different times. It's nice knowing other people understand.

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  2. You could be writing my story. It is not an easy road and I guess that there are going to be periods of adjustment forever and day. You are not alone. xx

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    1. Thanks, it's nice knowing we all understand and are not alone. It's just lonely amongst your normal day to day interactions - and I hope those people never understand first hand.

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  3. Please write a "how to" manual for those of us still to get to that stage as it is a mighty scary stage to be thinking about. xx

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  4. I have to agree Moira, it is scary and the feelings are confronting but my advice is to be honest with yourself about how your are feeling and accept that most of the people around you are just not going to understand because it is so far from their reality.

    I've tried to keep talking about my feelings to those closest to me and I've taken time out with myself to make sense of it all. It's still a journey but I have faith in myself and I know you have the strength to survive it all as well.

    Hopefully as I share our journey it will help and always remember other people do understand.

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  5. I love your honesty and openness and I'm sure many parents will be nodding their heads reading this. I know many of them feel guilty for thinking about what might have been but why should they? Having a disabled child wasn't part of the plan.

    I also think we're reluctant to talk about the daily drudgery and momotonous routines that fall on our shoulders because we don't want to be seen as complaining. It doesn't mean we love our sons and daughters any less it's just the reality of the role we have slipped into.
    A friend once asked me if my phone was at the other end of the house because I seemed to take so long to answer it. It never occurred to her that I could be seeing to my daughter on the toilet or showering her.

    It's a labour of love and we just get on and do it.





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    1. Thanks for your wonderful comment Michelle. You are so right that people feel guilty about speaking their true feelings and it's made even worse when people don't understand. I too get comments about not answering my phone and it's because I have to hide my mobile from Cameron and consequently I don't always hear it. Makes life interesting :)

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