This morning at ten the ladies came to get me up and shower me. This is a service much valued by me. These carers are friendly respectful and fun. Most have seen me travel down the most challenging road of my life, seen the changes last year when I could drive to the sea or collect my kids from school to no longer being able to walk or talk.
This disease most cruel has taken with it the use of my upper and lower limbs. It has also took my voice. Thanks to a great speech therapist along with the fantastic CRC [central remedial clinic] I have an eye gaze computer. No payment is necessary for this machine that has given me a voice. It’s invaluable. Writing with my eyes, I stare at a letter and it comes up on the screen. Yes, its amazing! There might not be a cure for MND yet but a big high five for those who created the eye gaze.
So, this morning a stand-in lady came. The other lady has been here from the start. Stand-in has been here before and to put it politely she wouldn’t be my favourite. I’m referred to as ‘she’, not by my name which is Emma. The most upsetting moment was when she said ‘shove her back there ‘ referring to me in a post shower state. It’s ignorance pure that makes a person speak like that to another. But I was horrified! I couldn’t even stand up for myself. Writing this is a vent thank god. But I will be making sure I don’t have the misfortune of working with this person again.
Here is a lovely quote my cousin Nickey shared with me:
“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”