Mum is Connie’s ‘primary carer’ and with Dad at work every day, most of the time I am ‘second in command’ to try and lighten the load. This weekend, Mum and Dad are going away for two nights to Edinburgh for the Christmas Markets which means I step up into the number one spot. I love the fact that they get to have a break and that I get time with Connie but it does mean the responsibility jumps up quite a bit!
As always, we are constantly on ‘seizure watch’ with Connie. When Mum and Dad go away, it means that the watch falls mainly onto me. Linked to this is giving Connie her medication. Normally, Mum gives her either all or most of it and sometimes I finish it off and we both remind and check each other on it. This weekend I will be flying solo and with Connie’s dosage changing every single week (on a Thursday), I have made sure that everything is written down for the morning and evening dosage. I know that I know it all but I would rather have it written down just in case!
It can be tiring and draining when Mum and Dad go away. Connie asks constantly about everything – what are they doing, where have they gone, when can she ring/FaceTime them, when will they be home. The list goes on and on and it absolutely drains you. Physically, there is all the actual care to do for Connie. Getting her up, dressed and washed, fed … the usual stuff. When I take over doing it on my own I realise just how much time and effort it takes for Mum to do it!
Whenever Mum goes away, I move into Connie’s room to sleep. There is a lot of activity going on at night with Connie’s epilepsy so someone (normally Mum) stays in a single bed in Connie’s room to keep an eye on her. Even with all the medication she is on, Connie is both extremely restless and absolutely still – it constantly changes throughout the night. When she is restless, you can’t sleep for the noise of her moving and wanting to make sure she isn’t hurting herself during a partial seizure. When she is still, she becomes so still that you actually have to check that she is still breathing because you would never know just by looking or listening. She seems to go an age without taking a breath!
All this added up means that by Sunday evening, when Mum and Dad get home, I will be shattered and definitely ready for my own bed! (I have nothing to complain about though – Mum does it all the time!) Hopefully this weekend will be full of me and Connie having lots of fun as well as doing all the caring bits and bobs. I am planning to fill the weekend with lots of festive plans being out and about because life is so much easier when Connie is busy and happy!
Me and Connie hope all of our readers have a lovely first weekend of December … don’t forget to head over to our YouTube Channel to keep up to date with what we are up too! We are *attempting* Vlogmas so there should be a video going up every single day (starting 2nd December) until Christmas! Fingers crossed this weekend goes fine!