My Life as an Unpaid Carer when all I want to be is just a mum..

Let me begin by introducing myself and my family.  I am Clare Lally, and I live in West Dunbartonshire with my partner Derek and our beautiful twin daughters Holly and Katie (the Twincesses).

The Twincesses are now 6 and like all families our kids are our life. We would do anything for our children and that’s exactly what I am going to be blogging about.

You see one of our girls has a life-threatening condition (bulbar palsy) and requires 24-hour care. She also has quadriplegic cerebral palsy and is unable to walk, talk and her life-threatening condition means she is unable to swallow and protect her airway and she is a silent aspirator which means she is always at risk of choking – hence the 24-hour care! She does have other things like severe gastro reflux, duplex kidney system and a lower field vision impairment. This does not stop her determination and fighting spirit to achieve things in her life. She is our inspiration and hopefully over this blog she will be yours as well.

The Twincesses were born 12 weeks premature, weighing just over 2lb each, and from day 1 it was apparent that Katie had complex health needs. As Holly was thriving and gaining weight, oor wee Katie wasn’t.We spent nearly four months in hospital and a lot of medical training for us to pass nasal-gastric tubes and suction machine training (the suction machine clears anything from Katie’s mouth to lessen the risk of it going back down her airway).

It has been a long road that we have been on with a lot of obstacles and brick walls in our path. I know what you are thinking, these obstacles must be about Katie’s health and needs, right? Wrong! It’s the constant fight and battle that we have to go through to try and provide our daughters with some kind of quality of life.

Because of this constant battle I am now a very active and successful campaigner and advocate. I campaign for the rights of unpaid Carers who are doing all types of Caring Roles.  And thats what I am, thats how I see myself ‘a Role’ not a mum.  What I didn’t mention at the start was that I can’t have children, myself and Derek went through IVF and it was our second attempt that was succesful and the feeling that day when we had our first scan and we could see the nurses looking and whispering at each other we thought Oh no there is something wrong!  But we certainly were not expecting to hear the words “Your having Twins”  I just wish I could have bottled that feeling and every now again when things are really bad we could open the bottle and let some out!

We wouldn’t change our lives although there at are times when i look at the Twincesses and I think that even all I do for them is not enough, I feel that sometimes its like being a robot programmed to do certain things at certain times like making up feeds, administering medicines, doing physio, practicing Makaton – Some days I just want to be a Mum!  But, what exactly is that ‘Role’?  Maybe we are just to hard on ourselves..

But,  I am hopefully going to bring some reality that some of you will or can relate to! Maybe some have never had to experience any of the issues that parents and carers have to? Who ever you are reading this, I just hope you enjoy coming along with us on our journey as much as we will enjoy sharing it.


12 thoughts on “My Life as an Unpaid Carer when all I want to be is just a mum..

  1. Oh my goodness! Awesome article dude! Thank you a lot, Nevertheless I’m encountering difficulties together with your RSS. I do not understand why I can’t join it. Is there anybody else having comparable RSS issues? Anybody who knows the solution will you kindly react? Thanx!!

  2. To quote an old saying “walk a mile in their shoes before commenting” Those of us who have their version of care to look after can only appreciate how hard carers work. Correct about getting support. at age forty wife effectively told she would not work again. looked at benefits…..take your choice from fifty forms. Never claimed a penny.

  3. Hi Claire, we’ve never met and I only found your blog and story through twitter but that’s exactly what I like about the new world of social media – it brings the power of inspiration right to you and your story is inspirational.

    Best wishes to you, your partner and the twincesses.

  4. Clare, I don’t know how you manage to do all you do as a mum, as a wife, as a carer; as a loyal and supportive friend to so many of us……….and still have time and energy to be the incredible campaigner that you are. Thanks, admiration, respect – and yes – we love you for it.

  5. oh Clare my dear friend.I knew all this but in bits and pieces – when you see it all put together my admiration for you and Derek increases even more.Bless you all – special people xxxxx

  6. Great post Clare, was wondering if you ever get a wee rest any time? Just a day to be a Mum and a Wife and Not a care machine(wrong word)
    I admire your strength and will keep reading, great post and lovely family support too, from your Mum & Dad.
    ps. what is Makaton?

  7. aww clare feel like crying only met u 1s with twins and already they made big impact on my life feel known u all forever being carer is hard work but shear dedication , u never get help u need it like fighting a constant battle with professional ppl who think if just bring them when no well or need to see dr but they forget its 24 hour care they need takes lot out u but u wouldnt have it any other way, not easy but u do it cause u love ure kids xxxi was carer for 6wks hardest job had ever done but robert was my world did my best just like u clare but i really admire ure honest and dedication to katie as well as holly ull fight for as long as u need to ure doing a fantastic job love lindaxxx

  8. Well Clare your dad and I would like to think we have already joined your journey and watching you the way you handle obstacle after obstacle it amazes us there has never once been an easy way you’ve had to fight all the way for over six years .Because you had a small bought house you couldn’t get help with putting an extra room on to it for Katie you ve had to take a council house to get an extra room also so holly could get her own room and wouldn’t get disturbed during the night when Katie’s machine was on .You have now got a wet room ,chairlift ,but no ramp which you have been waiting well over a year for just as well when it was snowing you had a sledge to take Katie down the slope in your garden there was no way you could take her down the stairs .Look Clare I could go on and on about the things you’ve had to fight for what we are trying to say is in fighting you ve fought with the best of them it doesn’t matter How important they are there is nobody better than you i remember somebody once said to you can’t talk to a doctor or people in authority like that well she was put in her place just like the rest .If you hadn’t done what you have done said what you have said Katie wouldn’t be here today so carry on fighting for ( caring ) Carers there will be a lot of children will be better off with you around from your proud very proud mum and dad xx

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