As a qualified nurse, wife of a GP and the parent of a young man with complex disabilities, I sometimes feel as though I’m being fed the line of empowerment whilst being thrust into a system which doesn’t listen. Sometimes I wonder if, as a parent carer, I am a lot like Cassandra. Cassandra, a [...]
It’s the 11th October 2021, there is a severe weather front closing in and I have written about it before. I’m braced for impact. It’s my son’s 16th birthday tomorrow I am full of so much joy, pride, gratitude and love. I am brimming with heartache, loss and grief. Weather fronts are the transition boundary [...]
Medications 7 times through the day and night isn't cancelled. 24-hour PEG feeds aren't cancelled. Hoisting and toileting isn't cancelled. 24-hour postural care isn’t cancelled. Personal care isn't cancelled. Cooking, cleaning, educating, playing, resting isn’t cancelled. Contacting and negotiating with professionals isn’t cancelled. Visual stimulation, sensory stimulation and active movements aren’t cancelled Trying to keep your [...]
