What a beautiful day it has been here today, The weather was hot but not over baring hitting 30’s this afternoon, had the day free spent most of the day relaxing in the garden, hubby was cutting the grass chatting with the neighbours, helping them with a few things. I did offer to help cut grass but he likes to do it himself .
I did however keep us topped up with sun cream food and drinks water.coffee, Niki is home now so caught up on sleep all those late nights of course work finished. Jake was at school and Hayley at the day center till 4 pm. She is with me at my house for tonight and to be honest she is still a little quite and sad about her friend, plus think she doesn’t like the heat so wanted to go to sleep early. It’s eerily quite shift. The blow up mattress I use when Hayley’s staying over is right at this moment slap bang in the middle of my kitchen with one Jake fast asleep on it because his room is too hot and he gave his fan to Hayley so she doesn’t over heat.He remembers the last time we had a heat wave during lockdown and Hayley had a seisure.
Well I am always on night seisure watch cause some times they are silent ones, that’s how Hayley’s seizures started at night time the first one she ever had was probably the scariest for mum and dad they heard a bang in the middle of the night and a kind of grunting noice that was the one she fractured her skull with it’s must be about 25+ years ago she was diagnosed with epilepsy, petit Mal and grand Mal seisure the one thing I learned about Hayley’s epilepsy over the years is that the petit Mal one she just stares sometimes her hands grip they can happen quite a few times a day still you think she is staring at someone or something so you just have to get her attention back,she had one the other week while holding a hot cup of tea, sometimes a blank stare a few times a smile but always she carry’s on the conversation she was having before they don’t last long maybe about 30 seconds to a minute. Headaches with Hayley is an indication she is brewing for a big fit or she has had one during the night , the shakes in her hand and slight unsteadiness first thing in morning also another thing she gets.
The grand Mal ones now they can go on for a few minutes she is always sick during and after she slapps her mouth it’s like a sound of chewing something loudly. If she is awake when it happens she comes straight for you she can hit out at you just before it starts , sometimes a loss of bowel and bladder control, we are pretty quick to get her to a safe space in the first few seconds before it goes to full body shakes. Again though when you been around them for a long time instinct and lived experience kicks in like second nature. Hayley has Diazipan which she has after big seisures then she usually sleeps for a few hours after. The big seisure are manage with meds and weight control so she has tegaratol prolonged release 400mls twice a day and lamotragine 225mls twice a day. They do regular blood test so review the dosage see if it’s still working especially liver function tests, and with her new asthma diagnosis she has a brown inhaler and a blue one. seisure makes her cry and she always apologies for them I never know why she does that so she does need a lot of reassurance she will be ok and she doesn’t have to say sorry for something she can’t help.
The kind of things that can affect weather she has a big seisure, if she is feeling unwell , heat , stress so sometimes if someone she cares about passes away. Weight, and food.
Sometimes though you get skills for caring roles by lived experience , sometimes it’s academic as well as in job training , most families have quick sharp courses and then they just do what is needed you would be surprised how quick your mind adapts to different diagnosis and support needs.you become an expert in the person you support,their moods Thier eating and sleeping patterns, Thier routines Thier likes and dislikes what they can and can’t verbalise, Thier pain thresholds.
There are so many different kind of carers young and old the world has so many of them.
Some paid and some unpaid, some are passionate about thier caring roles, some are tired and burnt out some try Thier best to support Thier love ones and some have to give up caring to care homes.
Well I guess that’s it for this evenings Blog. It’s still so quite here , all I can here is the buzz of the appliances the ticking of the clock and the sounds of everyone sleeping.
Good night 💤😴♥️