Sue Vincent's Daily Echo

Artwork by deviantART artist Scooterek

I am not a happy bunny, more of an angry bird, and I am going to say so, regardless of how much subtle and not-so-subtle pressure has been applied in various areas to encourage us all to be nice, obedient, quiet bunnies. Given the short space of time I apparently have left to live, my right to freedom of speech is one I feel I should exercise…and even the government encourages us to exercise, after all…

Some of you know the background to what I want to highlight and I apologise for repeating myself. For those who are not regular readers… let me fill you in on the story so far… and if I tell it in some detail, it is because unless you have been or know a carer, you are probably unaware of all that entails. And because, even here, I cannot give full voice to the morass you have to wade through when you are given a terminal diagnosis… But I do have a point or two to make.

I am a carer. It wasn’t a career choice, I ditched my career, one that had taken me higher up the ladder than I had ever expected, to be my son’s carer when he was stabbed through the brain in an unprovoked attack and left for dead in an alley.  That was in 2009. After weeks in a coma, and against all odds, he made a wonderful recovery, but was left needing  full-time care at that point. For six months, I drove between one and two hundred miles every single day to be at his bedside. When they released him from hospital, it was into my care and my bedroom… I slept on the living room floor for six months until I could manage to get a sofa-bed and spent the rest of his stay on that.

At that point, Nick was making excellent progress. He earned every bit, and we were both working eighteen hours a day… he to recover, me to both help him and look after the rest of the family too.  Because he lived with me, my income was low… if I remember rightly, I had to prove he needed a minimum of forty-five hours a week active care to get the £55 carers allowance. When Nick was finally able to get a home of his own, I was then able to be his ‘personal assistant’… a fancy name for carer… but they proved he only ‘needed’ twenty-seven hours help per week, even though at that time, I was there every day for between eight and ten hours or more. Apparently, freelancers can earn over twice the amount per hour that PAs are paid… although it took years to find that out, that’s the kind of maths all carers end up facing and living with because family carers, although they have to eat, still do it for love. Many family carers might even be better off being officially unemployed but thousands remain unpaid and unsupported altogether, slipping through the holes in a safety net they do not even know exists and which no-one has thought to close.

For example, when COVID first reared its head and concessions were made for care home workers and healthcare staff, all you had to do was show your official ID to access them. That is not something a family carer will have, although we will do the same work…  as well as a good many things that health and safety would forbid a formally employed assistant to do. I generally do the job I am paid for…then do the rest as ‘Mum stuff’.

You can’t complain too much (and this has happened to me when I raised an issue) because to do so would “trigger a full review” and the person you care for will “get even less care” as the hours are reduced… Except they won’t. Because you are already working twice the hours you are being paid for, seven days a week, doing all kinds of jobs you are not being paid for… and they know full well that you will go on doing so. “We rely on that,” said one, now-retired social worker who found parts of the system disgraceful.

I am not complaining. I would rather have my son here to care for than not have him here at all. But that does not make the system fair. And anyway, another four years and I could retire… just go back to being Mum again and enjoy some time adventuring in the ancient and sacred sites or our country. Except…

Last September… 2020… I was supposed to be going on holiday after joining the Silent Eye’s autumn workshop and taking the first break that year thanks to the restrictions put in place because of the pandemic. On the morning I was due to leave, with the car all packed for the journey, my doctor called with the results of a routine scan.  He advised me not to go anywhere as things did not look good. He had already told me that my spine was shot, with not only the discs worn to wafers, but the joints themselves badly eroded… the pain had been keeping me awake for months. At first, I thought that was what he was referring to… but no, they had found something that looked like a tumour. He was referring me to the hospital under the ‘two week rule’. And I knew what that meant…

(To be continued tomorrow)