Okay, you’re going to have to bear with me, because this is going to take a while…
I don’t talk much on social media about my dad. There are a few reasons for this, and most of them have to do with the fact that sharing hurts. But we’re past that now – well, maybe not, but I can write about it now.
Some of you will remember my Dad’s paintings. He started painting again when he and my stepmum, Hache (aka Wicked Stepmother – it’s a joke, btw – she’s wonderful) were living in Montpellier in France. Every time he finished a painting, I shared it on Facebook.
Which brings us to a couple of years ago…
Dad and H decided they wanted to move back to the UK. He’d been diagnosed with lung cancer, and again, some of you will remember my posts as he went for check-ups after surgery, and was given the all-clear. BUT… his health was not good. Getting around was proving more and more difficult. We’d known about his arthritic hip for ever, and walking was painful. By the time they came to move, Dad was getting around in a wheelchair and sleeping on the recliner sofa because climbing stairs was too much.
I went out to France to help them move back to the UK. They’d talked about where they wanted to live, and after some discussions, they decided on the Isle of Wight. The Hubby and I went to investigate rental properties for them, but the plan was always that when they sold their house in France, they’d buy a place on the island. Eventually, we found a ground floor flat about twenty minutes away from us. They managed to cram everything into it, and life got into a routine.
Unfortunately, it wasn’t a good one.
One result of the chemo was that Dad’s spine started to curve. No way to stop it. Sleeping on the recliner was now a permanent thing, because he couldn’t lie flat. Hospital scans proved difficult. And Pain became a new permanent feature too. There were some good points. They bought a mobility scooter, so Dad could get around, and it was great to hear about them going for a pint in Newport, and discovering one of our favorite cafes. But then things took a new course.
They sold their house, and were able to find one not far from where they’d been living. Once they’d moved in, a stair lift was put in. Dad has had psoriasis for as long as I can remember. So when the spine curvature got worse, the skin on his back was so thin that his backbones started breaking it. We’re talking painful sores which got so bad that District Nurses had to visit to dress them. The hospital also arranged for a hospital bed, but it proved so painful that it was used once.
By the end of November, the nurses were visiting three times a week, and it was obvious his sores weren’t healing. In fact, they were getting worse – and spreading. Previously, Dad’s life had been reduced to reading and sleeping, but pain was making both those things more difficult. Oral morphine was a way of life, and trying to find the right mix of pain killers to make life bearable became the goal. A life he didn’t want to live anymore…
There is never a good time to let go of someone you love, but Dad made it clear that he couldn’t go on like this. What stopped him? The effect it would have on H. What pained him most was that her life was reduced to caring for him. Basically, she had no life. So when I received an email from him, saying that he hadn’t found a way to go yet, but not to be surprised if he did…
Then November 26th came. I was hosting a two-day Facebook event, with forty authors taking over. Ninety minutes before kick off, H called to say Dad had been taken into hospital. He’d lost all the strength from his arms, and they suspected a severe infection. My thanks to the authors who supported me, not knowing more than where he was.
And as for what happened in the hospital?
It was an up-and-down time. Days when his antibiotics made him so nauseous, he couldn’t eat. When the morphine made him sleep. When they weighed him, and said he weighed ninety pounds. But after a week, the antibiotics stopped, he started eating, and he looked so much better. The turning point was a visit from a consultant from the Mountbatten Hospice here on the island. The upshot was that his pain management would be changed – and they would find a way to bring him home. He’d have carers visiting three to four times a day, and he’d be permanently in a hospital bed, but he’d be home. For the first time in a long while, he was comfortable, because treatment of the sores had stopped, and that had been the cause of a lot of pain. There was nothing they could do anyway.
We all knew he was coming home to die, but… he was positive. He said knowing it was coming made him feel powerful. He asked H to buy him a cigar for when he got home. Why the hell not? I figured, whatever he wanted, he’d get. He was also talking about finishing his book. We had no idea of how long was left, but it wasn’t imminent. He’d be around for Christmas. We thought.
The hospice staff were wonderful. They rushed funding through for Dad’s care package, and he was looking forward to Monday. That’s the Monday just passed, by the way. We dashed around like mad things last weekend, getting the house ready for him. There were a few last-minute hiccups, but Monday arrived, and we waited for him to come home.
By five-thirty, I was beginning to wonder why I hadn’t heard anything. I called H, who said he was awaiting transport. Then the call came. He’d been taken back to the ward, because his blood pressure dropped through the floor, and his sats were low. They said they’d try again, because Dad was insisting he wanted to go home.
We knew what that meant. He wanted to die at home.
I got in a taxi and hurried to their home. It wasn’t until seven-thirty that we got a call. He was on his way. When I asked how he was, I got a cautious ‘okay’. Fifteen minutes later, the ambulance arrived. Two men brought the stretcher into the house – and as soon as we saw him, we knew he’d already gone.
Apparently, one of the men told him he was home, and got a response. He died before he got through the door.
I’m going to stop there, because now I’m a mess again. We have no idea when the funeral will be, because…well, red tape… but it’ll get sorted. H is doing okay – I think she’s doing incredibly well, actually – and there are others to consider too – my sister, my mum…
There is a small network of friends who have known what is going on, and they’ve been wonderful. I’m so lucky to have the Hubby, who has been a rock. Parker Williams and Sue Brown have been checking up on me, and so many friends have been sending messages of support and love. Needless to say, writing is not that high up on my agenda right now, and Dreamspinner Press have been awesome.
My dad…. A very intelligent man, with a sharp wit. An extremely creative man who composed, painted, sewed, cooked… whatever he turned his hand to, he did exceedingly well at it. But a man who hated what his life had become, so maybe this was the best way after all.
Barrie Peter Jones. August 1945 – December 2018