Night Nurse Night Three

Last night, at about 9.00pm, after surgery had closed, Dr Toosy, my GP, dropped in to go through and reassess my medication. We have tweaked and adjusted the list with the aim of getting me a decent nights sleep. And since last night was the night of the night nurse night three I could really do with one. If you've followed the story on Night Nurse and Night Nurse Night Two you may feel a modicum of sympathy.

Polly and I have continued trying to make this work for both of us. Polly has forsaken her princess and the pea act and tried sleeping on the sofa-bed mattress which she had laid on top of a futon and stabilized with the sofa cushions. And, after years sleeping along side me, she has found the absence of the continual rhythmic noise of my BiPap ventilator distinctly off-putting, so she moved the dehumidifier into the living room with her and set it to maximum so the ensuing hum could lull her to sleep.

Meanwhile, at my end of the flat, I had been equipped with a wireless doorbell and the receiver was placed in the kitchen. This meant the nurse could ensconce herself in relative comfort with the kettle and enough space to lay out her comprehensive collection of celebrity gossip magazines and there would be no need to bathe the hall outside my bedroom with a million candle powered floodlight so she had light enough to read them. All that need happen should I need her was for me to press the button on the doorbell and she could forsake Jennifer Aniston for a moment and shuffle up the hallway to attend to my needs. Simple. You'd think so, wouldn't you.

Now, as has been mentioned in previous posts, I feel the cold and lack the means to regulate my temperature efficiently. I also find warmth to have a analgesic effect, especially when I am tired and trying to get to sleep. To this end I have an electric over-blanket inside my duvet cover. I usually have it set at maximum (9) when I first get into bed and turn it to a lower setting after a while. Last night Polly showed the nurse the simple control for the blanket and explained that I'd like it turned down to about 3 in an hour or so. The nurse nodded sagely and returned to the kitchen and to the trials and tribulations of Lily Allen.

An hour or so later I put down my book about television in the 1970s, sated with memories of Kojak, Alias Smith and Jones and Fawlty Towers, and now ready for sleep. The bed was beginning to get uncomfortably warm so I rang my doorbell and heard the bell chime in the kitchen. The nurse came down the hall and politely asked how she could help. I asked for a sip of water and for her to move my arm a little and turn down the electric over-blanket to it's number 3 setting. Moments later I was drifting off to sleep.

I awoke from a dream wherein I was an oven-ready chicken being roasted for dinner. Bathed in sweat I realised that I was being cooked in bed by my blanket which must still be on at its highest setting. I fumbled for my doorbell and summoned the nurse. Once again I asked her to turn down the blanket to the number 3. She fiddled with the control and confirmed it was set on 3. Relieved I slipped back to sleep.

Sometime later I was in a sauna with the door locked on the outside and the temperature indicator reading 'You Are About To Melt'. For some reason my night time carer had failed to actually turn the blanket down it seemed. I rang my bell. Moments later she was assuring me the control was set on 3. Perhaps my faulty body temperature control was even worse than usual. I asked her to turn the blanket down to 2. She did so.

The inside of the volcano was very hot indeed. Molten lava dripped onto my securely bound body. I struggled into wakefulness, bathed in sweat and entangled in my red hot duvet. Once again I called for help and once again I was assured that the control was set at 2. This was very strange and very very uncomfortably.
By the time I had walked through the Kalahari desert dressed as a long-haired pink kitten in a frogman's suit and later been barbecued over a pit of burning coals whilst wrapped in a woolly mammoth's fur coat I was beginning to become stressed. Surely my internal body temperature control wasn't that screwed up?

Puzzled, I asked for the controller to be placed in my hand by the nurse, who was by now regarding me as demented, so I could turn it off myself. As the bed finally began cool I slipped into an uneasy sleep. A glance at the clock told me it was 5am.

An infeasibly short time later Kalepo and Godfrey were calling me awake. As I clawed my way to consciousness I asked to see the controller that had caused me such heated distress all through the night; the controller the nurse had assured me was turned right down. It wasn't of course, it was still set at 9.

So what had happened? Well, it's possible that the nurse was getting some perverse pleasure from torturing me but I'm willing to concede that that is improbable (not to mention libellous).A more likely explanation is that she confused the on/off slider switch which has 3 stages with the temperature dial which has 9. When I asked her to set it to 3 or 2 she thought she had, but in actual fact she had set it to either 75 minutes or 12 hours. It does beg the question why she failed to notice the dial but more significantly why after the third or fourth time I called her and asked her to check it was turned down she didn't wonder about looking at the rest of the controller, which is, after all, only the size of my hand. Could it be that she thought I was making a fuss over nothing? Or, more likely, that she thought I was a bit simple and kept asking her to the same thing over and over again because I didn't know what temperature I actually wanted. I don't know. What I do know is that it was yet another long and difficult night.

Next time it'll be Night Nurse Night Night Four. Fourth time lucky?

Night Nurse Night Two

I am writing this through a fog of sleeplessness. Night two of the night nurse experiment is over and both Polly and I are growling and groaning in bleary eyed irritation at each other and the world in general. I don't think I spent more than 30 consecutive minutes asleep all night. Having someone parked outside my slightly ajar bedroom door shuffling and flicking magazine pages made out of plate-metal and casting shadow puppets with the blindingly bright reading lamp cunningly positioned to illuminate my bed like a flood-lit football stadium does not for a restful night make. It got to the point where even her breathing echoed round the bedroom like a wailing banshee, shredding my nerves as effectively as a cheese-grater on a broken tooth.

Meanwhile Polly was ensconced in the living room, sleeping on a mattress balanced on the sofa-bed, listening for the slightest disturbance with senses trained by nine years of motherhood. The mattress made the bed more comfortable she tells me, (or, more accurately, snarled at me) but having someone else in the flat, outside the children's room, made her night every bit as restful as mine. Every time the nurse moved, coughed or shuffled her newspaper Polly assumed the boys were under attack and was jolted awake, ready to fight off mad axe-men or rabid wolves. (She was getting a little hysterical by this stage. Sleep deprivation does that to you.) She also said she felt like The Princess and the Pea, balanced on her mattress, balanced on the sofa-bed. Only, of course, it wasn't a pea but a piece of Lego and a model submarine that kept her from Morpheus' gentle grip.

Suffice to say, by next week, when we have night nurse night three, we will have made some changes to the arrangements. I'm thinking about removing every light bulb in the house and sound-proofing the hallway with foam padding. That's if I can stay awake long enough to arrange it.

Night Nurse

I went to bed last night chanting a mantra, “don't freak out, Stephen, don't freak out.” I'm pleased to say I didn't but it was a close run thing. It was the night of the night nurse.

During the course of last weeks multi-agency mega-meeting we asked if we could have some night time respite care so Polly could get a good nights sleep without me waking her every hour or so to move my shoulder or give me a sip of water. Somewhat disconcertingly it was agreed instantly and before I'd really taken it on board it was arranged. For two nights a week I will be getting a night nurse to attend to my every whim. Sounds good? Last night I was faced with the reality.

The nurse would come from Marie Curie which has all sorts of connotations that I hadn't really absorbed. Was somebody trying to tell me something? I checked my medical records but no, I was disabled not terminally ill. Apparently imminent death is not a prerequisite for respite nursing care.

So, cometh the hour, cometh the nurse. I had been put to bed as usual and had settled down to read a good book (The Awful Secret by Bernard Knight in case you were wondering), when the doorbell rang and a uniformed nurse arrived. Polly introduced her to me and then decamped to the sofa-bed in the living room for her night of uninterrupted quality sleep.

I don't know if you have ever tried to sleep when you know someone is watching your every move, breath or creaking joint but I found it rather disconcerting. Originally the plan had been for the nurse to be in the room with me but I put my wheel down and said no so she was settled down in the hallway outside our bedroom with a lamp, armchair and small table. The lamp had a low wattage bulb in it, sufficient to read OK! magazine by and in our practice run had seemed dim enough not to disturb me as I lay in bed. In reality, of course, once my eyes had adjusted, the light seemed bright enough to perform micro-surgery by. Eventually I drifted off in to a fitful sleep but was awoken by a muffled cough. My shoulder hurt so I called for help and was instantly responded to. The nurse adjusted my arm and gave me a sip of water. Sleep came and went over the next few hours. I felt obliged to call the nurse whenever I awoke because I didn't want her to feel unwanted or that her services were unappreciated. I hoped Polly was sleeping soundly because I sure as heck wasn't.

At about 3.30am I asked if I could have a painkiller. The nurse leapt into medical action and seconds later I was fully medicated. Minutes later I was sound asleep at last.

Morning came and the nurse departed having acquitted herself with the professionalism expected of her uniform. Bleary eyed I arose and eventually made my way to the living room to find Polly returning from the school run. “Good night?” I asked. “Have you ever slept on our sofa-bed?” she responded somewhat irritably I felt.

So what have we learned? Well, it's early days yet, and I'm sure I can become accustomed to sleeping in a flood-lit room under the watchful eye of a uniformed care-giver. Whether Polly can get used to the sofa-bed is another matter. After all, the whole point of the exercise is to give her a good, restful uninterrupted nights sleep. It may be that without a spare room in which to install a proper bed the whole respite care thing is less restful than the alternative. We'll have another go on Thursday and see if we can tweak things to make them better. I'll let you know, if I'm not too sleep-deprived to write.