Good Evening, firstly I would like to thank Heather from Princess Royal Trust for Carers For asking me along to speak today. My name is Clare Lally and I am here tonight with my partner Derek and friend Michelle. I am full time mum/carer to my twin daughters Holly and Katie, the Twincesses. The girls are now 6 and a half and were born 12weeks premature, as a result of the birth Katie suffered brain damage and was left unable to walk, talk and swallow – she is fed via a button in her tummy and she is also a silent aspirator which means she can choke and you can’t hear it so we have to watch her 24hours a day to prevent this! She is such a clever girl she can also use this to manipulate a situation as well.. Holly our other daughter has no health issues, she is a beautiful girl with patients of a saint however I do feel I let her down a lot. So the theme of this weeks Carer’s Week is prepared to care? Was I prepared …to care? No i wasn’t, I was preparing to be a mum for the first time.
* – I wasn’t prepared for the continuous bad news we were getting for Katie, every day/week there was always something else wrong.
* – I wasn’t prepared to bring my children into the world and then spend every day thinking is this the last day we have with her.
* – I wasn’t prepared to have to learn all the various pieces of medical equipment we have to use on a daily basis.
* – I wasn’t prepared to feel I was letting down my other daughter because so much time focuses on Katie who isn’t well.
* – I wasn’t prepared for friends and close family to Abandon us at a time we needed them the most!
* – I wasn’t prepared for other Carers to be so horrible and nasty because I was campaigning and speaking out!
* – I wasn’t prepared to have to constantly fight and battle with services for services!
These are just some of the things I was not prepared for! But, Now these are the things I am not prepared to let other Carers Go through – we have to be prepared for things and we can do this by preparing together. If we had been told before we came home from hospital with the girls all the things we would have to go through, all the fights and battles we would have to deal with I really don’t know if we could have done it! There is no amount of preparation could prepare you for what lies ahead. For me the 24hour care of Katie is the easiest part of life, the hardest part is all the fights and challenges! I was on Call Kaye phone in the other morning on BBC Good Morning Scotland, and one of the things I said was we need a huge needle and thread to start sewing up all the loopholes and nets we all fall through! Well, we are that needle and thread, we can start sewing them up because we know what they are because we are the ones who have fell through them! We have to make changes not just for us but for the Carers who will be coming behind us so they do not have to go through the same hurdles and challenges that we have all had to.
And on that note I will thank you for listening and giving me the time to speak