The trouble with caring

Well I didn’t make it to the Bibs finals.  It’s sad in a way, I was hoping that I would get through but clearly there are better blogs than mine who are more deserved of this award (and congratulations to them too).

I have to admit it has got me down a bit which is unusual for me as I am usually laissez-faire about blogging awards but this time I’ve been left with a dent in my confidence and a feeling that there isn’t a lot I’m good at.  Sometimes, and this is one of those times, I don’t feel I’m getting anywhere in life; just treading water or spinning round and round on the hamster wheel and not having anything to show for the work.  That’s the problem with being a mother and a carer.  No-one says you’re doing well.  There is no appraisal system, no pay and no bonus scheme and the carers allowance, if you’re entitled to it, is a paltry £58.45 a week.  Considering how much carers do and the amount of money they save the country, this is more of a slap in your face than proper recognition. Worse is the fact you are then only limited to about £100 of work a week (after deductions) – any more and you lose your allowance.  The problem is there is no way I can earn £100 a week because I don’t have the time or the freedom to work the hours needed to earn that money; hence I’m stuck to the allowance and a very few hours of minimum wage work a week.  As much as I enjoy my few hours of work, the pay is poor and the work insecure.

I have, in the main, become dependent on my husband which goes against all what I am.  I never wanted to become dependent on someone; I always wanted to be an independent woman with a career but here I am in a situation that I never ever thought I would be in and sometimes I hate it.  Sometimes I hate the fact I have no career, I hate the fact that other people do not respect me as a mother or carer.  Instead I am forced to listen to so called experts on autism and aspergers who tell me this, this and that and to whom I nod gracefully but wishing with all of my strength that I could just tell them to shut up, that I’m not stupid and yes I do understand what they’re saying.  I never say these words of course because I don’t want to rock the boat, always fearful that word will get round that I’m a rubbish parent and will need some sort of parenting course or social services intrusion.

I admit, I’m struggling at the moment so to find I hadn’t got through to a blogging final made me a bit miserable.  I wouldn’t normally feel like this and I would just carry on blogging as normal but I’m having doubts about my ability to write, well to do anything really.  Everything I do is a half measure, squeezed in between my caring duties and running a home.  It is frustrating and I find myself thinking that my education was a total waste of time.  Why bother getting an education when you end up like me?  It is an attitude I hide from my children because I want them to get an education and to be the best they can be but I can’t help but question what was the point of my education if I can’t use it.  It seems such a waste but to say this also makes me feel incredibly guilty.  Shouldn’t I be happy and fulfilled to be a mother and carer or am I breaking a taboo to say it isn’t always what it should be?  Don’t get me wrong I would walk the earth for my children and I will fight for their rights till the day I die but caring day in, day out with no opportunity to do something else is depressing at times.

To care constantly requires a mental and physical stamina that many people do not appreciate.  You have to find a way of keeping going and it is hard to maintain your energy levels, your self esteem and confidence.  Without some sort of appreciation (financial or otherwise) and a chance to have a life outside the home how can we keep our own self esteem going?  Many days I feel as though I don’t exist.  With so much attention on the  elderly care crisis I feel that as a mother I am overlooked and that because I’m a mother I can’t be a carer and yet I’ve had to give up a lot.  I’m stuck in the house nearly all the time caring for children who are on the autism spectrum.  This is beyond what most other parents experience.  By the stage that their offspring are tweens and teens, life is usually stable; kids are usually at school, parents are usually picking up jobs and careers.  Not for me, not for us, we are stuck in what feels like no-mans land with no clear way out of the debris caused by an education system that has failed my children.  And there is a price to pay for this state failure: jobs have to be sacrificed, dreams given up on, someone has to take on the caring and advocacy role, tiredness and depression kicks in and with that comes a strain between partners.  No wonder marriages and relationships break up under the strain. No wonder families fall apart.

And yet for all of this, there is a glimmer of hope.  Without me, my children would not be where they are now, happier and more contented than they were in that torturous place called school.  Seeing an improvement in their behaviours is what keeps me going even on bad days like this.


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14 Responses to The trouble with caring

  1. Joanne Mackin says:

    My 11yr old daughter was diagnosed with Aspergers about 6 weeks ago. I discovered your blog via twitter and it has been a life line. Dont give up on your self .

    • Aspie in the family says:

      Thanks Joanne. My 10 year old daughter was diagnosed with aspergers last year so I’m glad to have found another mum in a similar situation. Deb

  2. Jazzygal says:

    Well, I value your writing too and think you do an amazing job. I enjoy visiting you here :-) I’ve given up being bothered by all those bloggy award thingies to be honest. I wasn’t nominated either and didn’t expect to be. Barely nominated in the MADs (and delighted to be!) but do not expect to get any further. At times like that I try to remember why I blog. I blog for me, because I enjoy it. If others read and enjoy also then that’s a bonus :-) Keep writing ;-)

    xx Jazzy

    • Aspie in the family says:

      Thanks Jazzy; I realise I don’t enjoy the competition and popularity side of these awards so I’m better out of it. Deb

  3. Steph says:

    Ditto, I didn’t even get nominated… I suppose all that means is I got over the disappointment sooner than you! I value your blog and your brilliant writing so much, and to have even been nominated in the first place hopefully shows you how much you mean to so many people. You’ve managed to spread the word and understanding of the conditions we live with so much better than lots of others ever manage to; please don’t give up now! But I’ll admit you’re right, caring is a job you don’t really get thanked for – 20 years (and more) of no gratitude is a lot to deal with. You know though, that you are doing the best you can for your children, and that’s why you plug on. Every once ina while you need to stop, take a really deep breath, have a big cuppa and lots of chocolate, and maybe hide yourself away for a bit – days or weeks from the outside world if necessary! Don’t go for too long though, we’d all miss you :) x

    • Aspie in the family says:

      Hi Steph, you are absolutely right about hiding myself away for a week or two. I shall take your advice but I bet I won’t be away for long. Deb xx

  4. Gill says:

    Firstly, big hugs!! Xxx
    You need to know how brilliant your blog is! I literally was telling someone the other day about it! So please don’t be out off by some silly awards, it means a lot to those of us who read it and feel we are not alone.
    I also totally get what you mean about being a carer and that’s it! I gave up a much loved career in teaching a year ago. I was senior management, looking for promotion to deputy head, had great friends there and now the highlight of my day is housework…! I too feel I have lost my identity and hate that I am reliant on my lovely husband for everything. I know becoming a carer was for all the right reasons, but my brain is so bored and tired.
    Please don’t feel like you don’t make a difference, you really do! It’s nice to know there are other people out there feeling the same way as me. We are not alone…so to speak!

    • Aspie in the family says:

      Thanks for commenting Gill. There is something about blogging where you hit a wall and wondering why you do it. It seems a lot of bloggers feel like this at times and this was one of these times for me. I’m glad people are reassured by my blog; it is nice not to feel so isolated. Deb x

  5. Ann Beck says:

    So sorry to hear you’re having a bad day – we’re all entitled to them every now and then so don’t apologise. I for one am very impressed by what you do and you have an incredible talent for writing and reaching out to people like me who thought nobody understood.
    Keep blogging – you’re good at it and I would miss you if you stopped – btw, I voted for you ;) Stick at it and you’ll get the recognition in the end.
    Ann xx

    PS I know totally how you feel – swimming against the tide to make a success of yourself, our time will come, I just know it!

    • Aspie in the family says:

      Thanks Ann. I wasn’t too sure about writing this post to be honest but then I thought people ought to know how hard caring and advocating for our children can be. It pleases me that I am able to reach out to people and that really does inspire me to continue. I love your PS; have been thinking about the legacy of the work done by parents and carers (may blog about this in the future). Deb xx

  6. Blue Sky says:

    So sorry that you’re feeling like this, and if it’s any consolation I didn’t even get a nomination for the Bibs! I second many of your feelings, and blogging for me is one of the few ways that I can get any recognition at all. If I wasn’t on the internet I would go days or even weeks without a proper adult conversation, let alone anyone telling me that I’m doing a good job. Your blog is brilliant, it’s well written, VERY informative and well researched. I’ve learned a lot here and I value all the ‘conversations’ that we have. Anyway, there’s always the MADS xx

    • Aspie in the family says:

      Thanks for commenting Blue Sky; your words and that of everyone else who has commented mean a lot. You were one of the first people I met online and I found your blog reassuring that I wasn’t alone in raising an autistic child. Now there are even more special needs blogs and it does feel like a growing community particularly on twitter. Blogging is hard though at times; we are masters of our own little blogging empires and its easy to become disheartened and wonder why you’re doing it. This was one of those moments for me so hopefully after a bit of a break I’ll bounce back. Deb xx

  7. JuliesMum says:

    I completely understand what you’ve written here – I have definitely been there, and have the T-shirt. Which does not mean, unfortunately, that I have moved on and am no longer in the same place, but does mean that I sympathize. (The difference in my case is that I do work outside the home (sometimes) but am nearly on my knees with the strain! Goodbye to career progression or promotion for a start.)

    I have to say here, since you obviously feel doubts about it today (and don’t we all suffer from self-doubt some days), that your blog is excellent, your writing is clear, impassioned and inspiring. You are obviously an intelligent and educated woman placed in a horrendously exhausting and demoralising situation. However, your dedication to your children, and your ability to hold the family together and support them, shines through your blog. As someone in a not dissimilar situation, I often come back to your blog because I find it so encouraging. You are not bitter, you don’t moan about people, you try to think about people in similar situations. You are constantly working out ways to solve the problems you face, and you’re making real progress, even if it must seem unbearably slow at times.

    I really hope that one day, the voices of women like you (and me) will be heard properly. Maybe one day your daughter or a grandchild, or a niece or nephew, will be able to read some of what you’ve written and understand you better and feel respect for what you achieved. Maybe one day someone will look at this and say it’s time for carers to be given better support because it makes no sense at all to leave people trapped and isolated in these situations when they could give so much more. But for the minute I’m sure there are a lot of people you reach with your blog who feel immense respect for you.

    • Aspie in the family says:

      Hi Juliesmum; I am so touched by your amazing and generous comment, I hardly know what to say except that you do know you are describing yourself. There seems to be commonality between many of us parents/carers and that is (I think) a resillience and a strength that many of us develop. Perhaps it is because we have to get on with it and we don’t have a choice but nevetheless it is still amazing and inspiring. I love what you say about our legacy to our children and grandchildren; you have picked up on my thoughts here as I often wonder when carers will get the recognition they deserve. This inspires me to continue to write so thankyou for helping me see this. Deb xx

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