Tony and I moved in with Mum in 1998 when she got very sick. We were live-in carers for 14 years, until she moved to the rest home 6 months before she died. It was incredibly hard work some of the time, but a huge privilege few daughters get these days.
During that time I also personal care PoA for my aunt, who had dementia and needed a rest home apartment then secure unit, and finally hospital level care. Again, a lot of work. But Aunt J and I were close, and I was glad to look after her.
Within a year of Mum dying Tony had to retire due to ill health. By the time he retired he’d already had two or three surgeries. For the last year or two he’s been less and less able; the last 6 or 8 months have been pretty awful.
I’ve worked through all those years, and done my art. But suddenly I have, maybe not more time, but different time. My days are structured differently because I’m not juggling work, art and caregiving. Now it’s work, art and visiting Tony. By 7.30 at the latest I’ve seen Tony, had dinner, and the evening is mine.
At the moment I’m going to bed early quite often. It’s cold, but I’m also resting and recuperating – my own emergency surgery is less than 3 months ago.
I’ve spent most of the last 23 years listening for movement in the night, ready to get up and help Mum, then Tony. Since late last year I’ve been used to sleeping in 2 or 3 hour stretches, often only 6 hours a night. I’m learning to sleep through the night, although at the moment I’m often awake at 5 because I’m not used to so much uninterrupted sleep.
My work and art are important to me, but they’re not ME. It’s time for me to concentrate a bit more on me – on looking after myself, and on figuring out what the coming years look like. I didn’t expect to be living alone at 56, with a husband in the rest home, but it is what it is. I’m determined to make the most of it, whatever that light look like. T
he photos below are all of me, but none of them are me … that’s still a work I’m progress…