So when did you become a carer?

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I bumped into someone the other day who I hadn’t seen for over a year. We exchanged pleasantries and briefly caught up. It’s hardly high up on the social etiquette rules to say ‘oh yes my kids are almost 6 but both disabled’, so I dodged the issue talking about the fact they are now at school (I didn’t even say where as that would take some explaining as to why one travels so far while the other attends the local primary), we are all well and how lovely it was to see her again after so long.

And then the inevitable question:

‘So what are you doing these days?’
‘Oh, I’m a carer.’

‘So when did you become a carer?’

What a good question!

When did I suddenly go from being ‘just’ a parent to my children to becoming their carers too?

moses basketWas it the day my children were born shortly after I first gave up full time work to start my maternity leave?
I was ‘just’ a parent then. New and excited and enjoying the beauty of holding two new lives.

Was it when they were around 9 months old and I made the choice to not return to work after my maternity leave?
I was ‘just’ another stay at home mum then.

Was it the day I first realised something was ‘wrong’ when I called my health visitor and they were only 18 months?
I was ‘just’ a worried mother then.

Was it when they were 21 months and the paediatrician first mentioned autism?
I was just an anxious, confused and upset mum then, frantically googling ‘autism’ hoping and praying there was some mistake. But I still didn’t see myself as a carer.

Was it when my children had their third birthday and still one of them wasn’t walking?
I may have been edging more towards a carer but everyone, including myself, still viewed me as a parent.

naomieegWas it when my children, first one and then the other seven months later, began receiving disability benefits?
Possibly. I guess signing as their ‘representatives’ should have made me realise. Over time I was doing more and more of a caring role but don’t all parents ‘care’ for their children? I was only doing what all parents should.

Was it when my children started having more hospital appointments than birthday party invites?
All kids need to see the doctor at some time, right? I was ‘just’ a busier than normal mum.

In truth I don’t know when it actually happened. I never had a starting date, I certainly have no finish date and it wasn’t something I ever planned on becoming. But the reality is both my children need twenty four hour care, well above what other children their age require. I am more than a parent:

I am a fellow professional at every meeting, knowing more about their needs than any of the others combined.
I am their voice when they have no voice. I will fight for them way beyond what anyone else ever will.
I am their advocate. I will take their side against all odds and push for what is in their best interest.
I am their driver, lifting them out and in transport, pushing them in wheelchairs, changing their nappies, and ensuring their health needs are met.
I am their nurse making sure daily medications are taken on time and reordered as needed.
I am their speech therapist, occupational therapist, mentor, and encourager. I spend more time doing exercises from therapists than I do doing homework from school with them.
I am their researcher ensuring new guidelines on their conditions are adhered to and they receive the care they should.
I am their educator when school has finished but they still struggle with the concepts and learning that others grasped easily.
I am their administrators filling in forms on their behalf and keeping their records up-to-date.

Over time my job evolved. I have a full-time job that brings me huge rewards but very little pay. I have gained patience, empathy, a sense of humour and the ability to function on very little sleep. I have become well versed on my ‘clients’ needs and wants. I am highly educated on how their disabilities and conditions affect them personally.

To many I am still just seen as a parent, a stay at home mum, or even an unemployed person.

But I am proud to be a carer.

When did I become a carer? When I realised my children needed more of me than I thought I would need to give. When I realised their care needs were overtaking my life as well as theirs. When there was no longer time to think about a job let alone apply for one or have one. When the meetings and appointments and paperwork became my life.

And I was finally ok about that.

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8 thoughts on “So when did you become a carer?

  1. Relate to all of this very much. Do you become a “carer” when you are awarded £60 a week by the state for doing a job that should pay 10 times that? One thing I do know is that it is a lifelong commitment that requires special people. Here’s a thing- l am involved in training carers on a daily basis and something I strive to get across is that carers should take great pride in their work and their role. They are worthy of high status ( and rewards that are sadly missing) It is also a task where the challenges are massive but the rewards are often of a higher order than merely financial. I see home carers performing with skill, compassion and dedication every week. Due to my role as a carer to my precious boy I feel I am more able to see and fully appreciate the wonderful work my students do everyday. It is a role that is often undervalued but I for one will keep raising awareness about the wonderful things carers do everyday.X

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    • Exactly Duncan. It is seen as a lesser role partly due to it’s financial status (or lack thereof) but it is job to take huge pride in. It has huge responsibilities but takes courage, patience and skill everyday. I admire you and every other carer doing such a wonderful job out of love.

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  2. Miriam thank you for summing up so clearly what a carer is?
    I have been a carer for about 14/15 years – when I realised that there was no way I could go back to f/time work as I had too many meetings/appointments and emergency calls to school to be a reliable member of the work force.
    And yet even to this day I’m sometimes asked ‘Do you work?’ or ‘ Are you going back to work soon?’
    The answer is Yes I work and no I’m not going back to work for the foreseeable future. I am a ‘lapsed’ RGN. I could not sign the registration documentation to maintain my registration as I had not done enough hours working. Caring in the family doesn’t count.

    Please can I use your description of a carer (acknowledged to you) to try and make people understand what we do – and also to help other parent/carers acknowledge just how important role they are doing?

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  3. Once again such a poignant article Miriam.. you surely are a voice for the children as well as all the other things you described.
    But I believe you are also a voice for others walking a similar life journey, and your gift with honest words describing these unique challenges will both encourage them and maybe more importantly help others understand what is so hard to put into words! Feeling proud of you precious friend!

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  4. I can totally relate. My son has special needs and I gave up full time work when he was approaching two, when it became impossible for me to make all his hospital appointments or check ups and I felt guilty!

    I removed him pretty much from the day care he was in as it wasn’t right for him. He went on to a preschool a couple of mornings a week before they felt he needed more attention, he moved on to special nursery and it was the best thing for him! Every afternoon he would spend three hours being a normal little boy! Then came the starting school and we knew it was going to be special school but I’d to return to part time work for financial reasons and i was at university and I struggled to find the right support for him until my husband came home after I’d bought up the subject months before and declared that work wasn’t making him happy and he wanted to look after our son! He’s his main carer and it’s been strange adjusting over the last year! But it’s been the best decision ever. Thomas has epilepsy and needs someone close by in case school need someone. It was a whole my husbands company struggled to understand! Why would he give up work? He’s the man! Why not the mum? It’s a family dynamic that works for us and so many people have commended my husband for becoming his carer. But like all carers, he doesn’t get a day off. For him washing his car is his alone time! I’m grateful that he’s there for Thomas so I can be there for the both of them!

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