Family Carers.

It is an odd term.

I have always cared for my family, even before having a child with higher than usual care needs.

“Carers” are people I can pay to come to my home to help support my son and to support me in caring for him.

Then they go home to eat in peace, relax, shower and possibly sleep in over the weekend. Maybe they have plans to go to a show or for a meal?

Uncomplicated plans.

Plans not affected by being “a carer”.

Yet, that is not my life.

My day starts when someone else needs me. That might be at 5am. There may not have even been a finish time the night before. Some days blend together. But my person needs me and they need me before I have had a wash, or got dressed or had a coffee.

My day has started and I do it willingly.

Without me, another person might suffer discomfort or indignity. Or they might feel alone and as though they do not matter.

Even when my body hurts, even when it is a struggle to get up, even when I am exhausted, I get up and I do what is needed. No day off sick, no agreed annual leave. Ever.

My “carer” role involves doing whatever is needed, without a thought for my health and safety needs, without asking if I had my break and without question of whether this job should have two people. And I am needed for physical tasks all day. There isn’t an educational placement which will meet his needs, so I do that too.

Yet when I pay people to come in as “carers” those questions must be asked and must be answered. If my paid carer is unwell, or injured in any way, I send them home to rest.
Because they can’t possibly risk themselves and they can’t possibly give the role what is needed if they are unwell. I have a responsibility to them.

Even if I am more unwell than they are.

So what am I?

Because “carer” doesn’t really fit.

I am not just “mum”. I crave times where I can just be his mum.

I care out of total love, not occupational requirement.

No breaks, no leave, no rest, no recovery.

I often compare what I do to working as a labourer on a building site, only it is one where the bags of cement and the piles of rubble fight you as you move them.

I am responsible for my much loved person.
I am responsible for his paid carers.
But where is the care for carers like me?

Not employed.
Not valued.
Yet providing my services round the clock.Day in, day out.

But what happens when we break?

I hope I never have to discover that.

I know I “bang on” about Changing Places toilets but with a good reason.

They matter.

I need to recruit carers.
I need a break and my son needs people with energy to go out with.
He also needs more than just me.

But paid carers can’t take my son out unless they can manage his needs.
Nor  can they safely take him out if they can’t use toilets themselves.
And without Changing Places toilet facilities, they cannot “go” either.

So on top of everything else, I also need to change the world around us.

Paid carers go back to their other life.

This is my life.

“Carer” doesn’t even begin to describe it.





20 thoughts on “Family Carers.

  1. Don’t worry about the term “Carer” being not enough. Of course it is. The people you hire are Care Workers, not carers. Carers give their time freely out of love & never expect to be paid. Carers are usually family or can be very close friends, but never employees. You are the ultimate carer as you are also mum. Your care, given from pure love, is worth many times that from care workers, no matter how much they love looking after your son.
    Remember, to be a carer isn’t about doing a job but is an honour to be able to give your son the best life he can achieve. You’re doing brilliantly.


    1. Thank you. It is an honour to be the person helping this boy to achieve.

      He was not expected to talk and not expected to manage a high tech communication aid. So I got him one, he learned to use it and speech followed in time and is still progressing.

      He was not expected to be able to use a powered chair so the “services” would not provide one. I found a way to get one and worked with him for years. He still needs support but he can do it.

      He was not expected to self propel a manual wheelchair. So I found the lightest one possible with the support he needed. At first he only moved it a millimetre but that showed me he could move it! He eventually left the living room!

      I will always believe in him.

      Liked by 1 person

  2. Oh you paint the picture so clearly. You are so right – the word “carer” just doesn’t come close. What you do is amazing. It may go unnoticed by the world but I your special person will recognise it every moment of everyday (even if they’re unable to communicate that or fully appreciate it) – you are enabling them to live. I think you should be really proud, and give yourself a rest in anyway that you can #blogcrush

    Liked by 1 person

  3. I had to swing by your other post and see what a Changing Places toilet was…and seeing those photos helped me realize that a lot of the “wheelchair accessible” toilet facilities are probably not very wheelchair friendly. I hope you are able to help realize the changes that are needed in this world. #KCACOLS

    Liked by 1 person

    1. Thank you for taking the time to find out about them.

      The reality is that very few of those toilets with a wheelchair logo on the door are actually accessible for wheelchair users.

      I had a chap contact me last year saying that he has barely left his home in 10 years due to not being able to overcome his fears after having a bowel accident when out and having nowhere that he could even clean up till he got home.

      Too many people are living limited lives due to a lack of properly accessible toilet facilities.


  4. You and your boy are so amazing! There are just no words to describe how strong you are and how brilliant you are for fighting so hard to change the world around you, to make it accessible – and not just for your son, for lots of other people too. For thinking about those very paid carers that help you, as well. Thanks so much for linking up at #KCACOLS. Hope you come back again next time!


  5. Wonderfully written post about your thoughts and feelings. You are so right to capture and put down in words the differences there are. It can be so hard to understand at times that there is a huge difference between the words carer and care worker. The end result, the feelings and the commitment are different. There are some amazing care workers and I think even they would agree and know there are many ways that they are not the same. There are some care workers that I know who are also carers. It’s huge and a huge hug goes out from me to you.
    I’ve reblogged if that’s ok x

    Liked by 1 person

  6. This is my job. I work as a carer at night and mum during the day juggling up everything. One of my son has got autism so I feel you. Life can be tiring sometimes that you even forget to care or look after yourself. I just deal with it everyday. Your not alone and your doing a good job 🙂 #kcacols

    Liked by 1 person

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