I don’t want to belabour the point, but I think it’s important to tell the story. When Mike was born, he seemed quite ok. We were more worried about Dave, who was nearly 4 and a fairly sickly child as he had asthma (undiagnosed). We were used to rough nights. But as Mike got older, life became much more challenging. If he napped at all during the day - even for a few minutes - he wouldn’t sleep at all at night. We slept in shifts, each of us taking a few hours to look after him while the other slept. This while holding down full time jobs. Now, those jobs had flexitime, but there were core hours you had to be there for, and there were limits on how “flexible” it was. Excuses for lateness, tiredness, or anything else didn’t count. Most days we were surviving on 3 hours or less of actual sleep. Gill had dark rings round her eyes, to the point where people started to wonder if I’d given her black eyes. If I had dark rings, I didn’t know - I stopped using mirrors.
Any sort of understanding of our situation was along the lines of “we’ve all had sleepless nights.” The last time I was told that, I suggested that they try it for 18 months without a single day’s break. Silence. But no understanding.
As our caring role expanded, there was even less understanding. Eventually, it got to the stage where a back injury and almost constant migraines led to my having to stop working for a few years. I say “stop working.” Full on caring for two parents - one with severe stroke issues, one with mental health issues and severe arthritis - a sister (with learning disabilities, probable autism, and genetic issues that would now be described as “intersex”, as well as a serious heart condition and lung damage). Gill and I were both suffering with stress and related issues. It took four years before I was in a position to start looking for work. A year later I started work at a Carers Centre.
There wasn’t a more carer-friendly place to work. But the stress of the job and the caring situation at home was constant. I coped with it for longer than I should have, but after almost 20 years I recognised that I was fast approaching a wall I was more likely to crash into than to climb. Covid hit first, and for a year I worked from home because of lockdowns. We were unable to recruit for my replacement. Eventually, we got that sorted and after 21 years I took early retirement.
Only now - four years on - is my health more or less improved. My diabetes is more stable, my back is not quite as troublesome because I make fewer demands on it, and my weight is down by about a stone on what it was. There’s still a ton of stress in my life, although most of the people I cared for 25 years ago are no longer with us. I still have three to care for.
Bear in mind that during that last 20 or so years, I was in employment at the one place that “gets” carers - and all of the flexibility that the Trustees had allowed in our policies went far beyond anything written into law, to the point that our HR advisers were telling us we were taking the risk of carers taking advantage.
For most of the time I was manager, the majroity of our staff were carers or former carers, and for six years, all of them. That wasn’t deliberate - it just happened that way. Not one of them took advantage. For my first eight years as manager, our staff turnover was less than 10% a year.
Only funding issues changed that situation.
But I digress.
Even in that environment, caring and working was too much for my health. Politicians do not understand this. Caring and working is the toughest thing you can do, and I’ve done it for most of my life. I don’t know another life.
I’m always tired. Always. Some days are worse than that.