It was with great sadness that I witnessed the departure of our double bed from this room from where now, at 4.32 am, I start to tap this out on an iPad.
There would be few who can't appreciate the significance of being forced to swap from a place shared with a loved one, a lover, to a single bed, especially one that seems composed of bars and is overlooked by what appears remarkably like the gallows. But its time has well and truly come, and I've been using it for a few weeks now.
In my mind, as this bed was parked in the corner of the room patiently waiting for its time to come, I always thought of it as my death bed. As it turns out, it is probably unlikely to be, but in a way, I hope it is. That's another story.
So here it sits, in the middle of the room, with me in it. Tracey has thought out the best possible arrangement of items around it with great care. She's made the bed feel like something you find in a bedroom and not a hospital ward. The ancient treadle Singer sewing machine bench, so evocative of ours as children, has a cloth over it, and essential items are within arm's reach.
Only my left hand is capable of picking things up with any confidence on my part, and even that is a tricky operation. My movement is now ever more limited, so I can reach only so far without enormous effort, involving the bed pole above me gripped by my right hand, which still takes one type of strength, and the bed bar to which my left hand clings.
In other words, critical things must be within what seems easy reach – to you maybe. The width of a fingernail can mean the difference between what I can reach and what I can't.
Things on the tray are placed precisely. But I won't talk about that now. This is about the bed.
I am fortunate to live in a time of hydraulics, powered by electricity. It has three items that can be adjusted. One is the most obvious. The top one-third, the pillow section, can be raised and lowered. Having previously tried to arrange pillows behind me on our double bed to be able to sit up a bit, I can tell you it is very frustrating. It seems right for a brief time, but then I want to move slightly. The arrangement collapses. You get the picture.
But with this bed, I can get the angle just right if I want to sit up. Not only that, I can change it a little if it becomes uncomfortable, which is inevitable. The human body is made for movement, not to be static for any length of time.
The second thing that can be varied is the height of the section under my knees.
I didn't appreciate how vital this is until I spent longer periods in bed lying on my back. My heels start to burn. They're burning now and will be red. I'm not checking – it's too cold. Outside it's zero.
If I raise the space under my knees, it helps. It doesn't solve it outright because even then the extra blood in the heels causes this discomfort. But by changing the angle frequently, it makes a difference. It will stop sores developing on the heels, I hope. Certainly there's no evidence of anything like that.
The whole bed is designed to try to prevent bedsores from developing. I never imagined in my wildest dreams that I would ever be in danger of these.
Right now, curse, damn and blast it, I have to go to the bathroom. This is a major operation. I have to dismantle my precisely arranged iPad on its Podpad to get it safely back on the tray. (Bless you a thousand times for that wonderful birthday present, Ros and Dave!) But now, I have to get up briefly, which means I have to lower the pillow section and the knee adjuster so the bed is flat, and carefully manoeuvre the iPad on to the tray. You have no idea how heavy an iPad feels with weakened muscles.
Then I stand up, which is a shaky business. Let's leave out describing all the difficulties in doing that and what comes next. Too bad I have to drink so much water.
★ ★ ★ ★ ★
|IPad with Podpad|
So I'm typing blind again. I must remember to find them when I get up or I may stand on them. That would be the last straw – almost.
The third capability of the bed is an adjustment that's becoming increasingly more critical – the up and down movement of the entire bed. It's something I never thought about when I was able bodied. Most of you won't either.
I need to raise the bed to do little things like turn out the light. Don't laugh. In order to reach the lamp switch, that tiny difference can be critical. I need the bed at a high point when I want to get up, so I can grab the handgrip with my right hand. If the bed is any lower, I can't reach it before a right arm tremor stops me. When I swing around to get up, the height of the bed allows me to steady myself.
When I need to get my shoes and socks on – another major op – the bed has to be just the right height. I'll spare you the details of achieving that feat (feet?), but in ain't easy.
Before I get back into the bed I must lower it so my feet are firmly on the floor, and with one good leg to be able to get in rather than dropping off the edge. That way I can push myself far enough into the bed to complete Phase 2.
With the good foot pushing the useless leg and by hanging from the bedpole with the left hand I can inch the right leg over past the centre point. That combined with the gallows allow me to swing in to that point. Not quite Tarzan but you get the idea. Then I can raise the bed to a good height to read, or to switch off the light.
Of course, I could call Tracey in to do all this, but every few minutes I'd need something else. She already runs round after me way more than you can imagine unless you're in a similar position – and you carers and care-receivers who are reading this know what it's like. But while I can do things, even with great effort, I should, for obvious reasons. Each day I can do less. I need to do what I can while it's possible.
Now, I suppose I better put this away as it's nearly 6 am. I'll try not to drop the iPad on its way to the tray. Here we go....
Later: I spy the glasses down in a position impossible to reach – on the treadle of the sewing machine. But wait. If I lower the bed as far as it can go, and reach across under the Singer table, and stretch out like blazes, I can just...reach. Yeah. Now raise the bed again. Something else achieved. All by myself.