Don’t forget the carers

Its Carers’ Week this week in the UK, an event which is aimed to increase awareness of the work being carried out by millions of carers across the country.  If you are a carer or know someone who cares then you probably already know what is involved in caring for someone.  But for other people it may seem that care is what happens when your elderly relative goes into a home.  But care is more than that.  Care is also something that you may be faced with as a result of illness, disability or accident of your husband or wife, child, friend or a neighbour.  In other words care affects everyone at some point in their  life. 

So what does care involve?  Well for me and my family, this has meant adapting to my son’s SD (autistic spectrum disorder).  On a daily basis this involves us thinking about how we communicate with him, what he eats, what clothes he can tolerate, his response to noise, temperature and touch as well as helping him with his personal appearance and hygiene.  Going out requires another set of considerations such as helping him cope with a new place and a change of routine and any sensory difficulties he may have.  And whatever we do, wherever we go, we have to be observant to signs of meltdown which we can respond to to prevent a full-scale crash.  There are probably loads more things that we do that has so become our norm that it is actually hard to recount what we do.  Indeed, it is not until we meet a boy of his own age that we realise the extent of our son’s difficulties and the impact on our family.

But it was my son’s mental health crisis that brought home to me how much more challenging it must be for those who care 24/7.  For my son, his mental health problems rendered him completely unable to leave the house and attend school.  For me this meant that I was suddenly faced with the added responsibility of helping him to overcome his agoraphobia.  Yes medication helped to lessen his anxiety but it was not the immediate answer to his problems.  Instead it took months of gentle persuasion to help him out of the front door and beyond.  Sometimes he made progress, sometimes he didn’t, sometimes he got worse and many a time I wondered if he would ever recover.  At the same time, I was also having to deal with the sudden influx of professionals who had suddenly decided to take an interest in my son’s situation.  And yet not one professional asked me how I was doing, how my husband was doing or even how our other children were faring in such difficult circumstances.  Instead I had to tolerate unsympathetic comments from some professionals who clearly had no understanding of the work that I was doing in my own home. 

And it was difficult.  Being stuck in the house caring for someone who, at the time, could hardly get up in the morning or even hold a conversation, was isolating.  I barely left the house and sometimes went many hours without talking to anyone.  Instead my days were spent encouraging my son to re-engage with life; to get up, to eat at normal times, to get dressed, to talk to the professionals that visited us (which he rarely did), to play a game with me or to watch television together.  And with the quiet atmosphere that I created in our house, he slowly recovered.  But as he recovered, I found myself slowly spiralling downwards into a state of exhaustion and anxiety.  My health was not helped by our continual battle with the authorities to provide an appropriate education for him.  On top of this I also felt great frustration as I was unable to take up my post-graduate studies or pursue any sort of work.  I even gave up a job at one point.  Of course there wasn’t any question about giving up on my own aspirations in order to care for my child though  I continue to worry about the impact this has on my employability and future financial security.

You may ask why didn’t I ask for help and the answer to this is quite simply it didn’t occur to me to ask for help.  You see, I didn’t have the time or the energy to think about ‘me’ as I was too busy looking after my son and fighting for his education.  In any case, I’m not sure what could have been done to help us.  You see my son was so frightened of other people that he was physically unable to leave my side for many months.  It really was a case of just getting on with it.  The problem with this is that, without any sort of break, you start to find yourself becoming more and more exhausted and what good is that when you are caring for someone.  Looking back though I think the thing I needed most was having someone to talk to who understood my situation but at the time I didn’t realise I needed this.

Fortunately for me and my family, my son recovered from his agoraphobia and two years later he is now in a specialist school.  As for me, I am starting to slowly recover  though my caring duties still remain as I continue to manage his ASD as well as his sister’s aspergers.  It has been a long road for me and my family yet I can honestly say that through my experiences I have discovered a strength and stamina within me that I never knew existed.  As a result I have become a stronger mother, one that is not afraid to advocate for her children.

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12 Responses to Don’t forget the carers

  1. What a beautiful post! I think you have expressed it so perfectly … your story and the stories of so many parents who are carers for their children. I really do think that carers are the forgotten people.

    I hope that people that can DO something read this. More needs to be done for people with disability and autism. It shouldn’t have to be a fight all the time to get access to appropriate therapy and education. It is not rocket science. It just needs appropriate funds.

  2. The Rambling Pages says:

    I agree with Jontybabe, I think as parents you don’t see yourself as a carer. To me the way Little Man was and has been was just part of having a child, with him being our eldest for a long time we thought it was normal and that we were not doing the parenting thing very well. I have always found it very difficult to ask for help! You sound like you have done a fantastic job

    • Deb says:

      I can see that when he or she is your first child it is easy to think that this is the norm. With me though, I could see my son was different from my first born (a daughter) but I kept being told that my son’s behaviour was because he was a boy and “boys are slow to mature” which I initially accepted. But as he got older the problems got worse and that’s when the blame turned on to me. Even then though I found myself starting to get used to this different type of family life and it never occurred to me to ask for help even when I started to feel unwell. I’m like you in this regard; I find it difficult to ask for help. Thanks for popping in RP; will pop over to your blog soon. Deb xx

  3. fiona says:

    Caring is so different for each of us, yet we all share common experiences. I can identify with many of yours even though our children are very different. I’ve blogged about mine too and taken a slightly different angle from you. Pop over when you can and let me know what you think. I’ve actually dared to be a little controversial…waiting for the complaints to roll in!!!! (I’m off to hide!)

    • Deb says:

      Thanks for commenting Fiona. Have popped over to your blog and read your excellent article which really illustrates some of the diversity in caring, I think. And I didn’t think your post was controversial either but it does show the variations in need of carers; some want and need support, others dont, some (like me perhaps) just need someone to talk to etc. Its certainly something people should be aware of because I wonder if there is a tendency to see us carers as all being the same with the same needs. We are as diverse as the rest of the population, I think. Deb xx.

  4. Asiya says:

    Hello,

    Any chance we could repost this on LSE’s Equality and Diversity blog (www.blogs.lse.ac.uk/diversity/)? We can link back to you. Please write to a.islam1@lse.ac.uk if interested.

    Thanks,

    Asiya

  5. Blue Sky says:

    I hope that this is read by people outside the caring community because you’ve done a great job of explaining what it is like to be a carer. As you said you can forget many of your children’s difficulties because you are so used to them, until you see them or compare them with other children. I constantly have to explain to people why it is so difficult for me to do things and go places that other people take for granted xx

    • Deb says:

      Hi Blue Sky and thanks for contributing to this issue. I know what you mean about constantly explaining to people why its so difficult to do things. Sometimes I get fed up with explaining because I can see some people just don’t get it. With my son, if I know we’re heading for difficult behaviour I can take action to prevent it escalating but because he can still look normalish to others, they don’t understand why I’ve had to cancel going out for example. xx

  6. jontybabe says:

    Informal carers are a forgotten part of society and our own health slips unnoticed! I think for some parents they do not ask for help because they see themselves as just being parents and not carers. We under value the job we do. We are our children’s lifeline and link to the outside world and that is very demanding and stressful. You are doing a wonderful job Hun. I wrote a bit of a funny post on my blog this week about whether parents in general and carers take any time to look after themselves. Check it out. Will hopefully give u a giggle. Xxxx

    • Deb says:

      Hi Jontybabe. I think you raise a good point about parents not seeing themselves as carers as well as parents. Its a difficult one knowing when parenting extends into caring and I know its taken me a long time to recognise that I’m a carer as well as a mother. For me, its seeing the families with non-disabled children that made me realise that I’m doing a lot more than parenting. I shall check out your post very soon. xx

  7. Jazzygal says:

    What an incredible, important yet under-valued (by Governments everywhere) job carers do. You have personally been instrumental in helping your son through this crisis, thereby helping the state (doesn’t matter which country you’re in, they’re all the same it seems) and saving them a fortune. And still you are a carer even though that crises is over.

    There have been some frightening fly-on the-wall programmes on UK and Irish TV recently that have highlighted this issue. Well done on showing yet another aspect to the role of carer.

    I guess I’m a carer to my ASD son too but he’s so mild that I feel guilty even putting myself in that category. Some good friends have pointed out that it is my role as a carer that have got my son to the mild end of the spectrum. And that is true. The fact is, I still can’t go back to work. My work here is not yet done…

    Great post ;-)

    xx Jazzy

    • Deb says:

      Hi Jazzy, thanks for your comments. You are absolutely right to raise the issue about how carers save our countries an absolute fortune. It seems ironic that you can be a formal carer and enjoy the benefits of employment yet if you are an informal carer you struggle to get even the minimum of support. I think the thing I would like to see most though is an improved perception of care as being an important role in society and one that is respected and recognised whether you are an informal or formal carer.

      I think your friends are right to point out that its your role as carer that is managing your sons ASD but I understand the guilt you feel. We have to continually manage our childrern so that they can cope with life and sometimes it can seem that there is hardly a problem. Deb xx

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