In Limbo

Theoretically I'm off to the Brompton tomorrow but I won't hold my breath (they get really mad if you do that). I'll keep you informed of my progress or lack of it. Meanwhile I'm in a kind of limbo. Ho hum.

Wales 09 or Don't Hold Your Breath

When going on holiday what is the last thing you want to forget? Sun cream? Swimming costume? Wheelchair battery charger? Ah yes, another Deal holiday gets under way with its customary smoothness.

Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.

The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.

A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace both Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)

Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.

We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.

As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.

I sense that a trip to the Royal Brompton Hospital is on the cards.

Quiz Night

Which planet, apart from Venus, has no moon? Who, because of his smallpox vaccine, is known as the father of immunization? Name all seven colours of the rainbow. Who illustrated A.A. Milne's Winnie The Pooh? Who led the peasants' revolt of 1381? Which artistic movement was Monet part of? What is the chemical symbol for Tungsten?

Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.

The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.

As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.

The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.

Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.

Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.

Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.

Robert the Bruce.

R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)

Caught In The Middle

Polly has just read the homecare agency the riot act. Not for any one particular reason, but rather for the accumulative drip drip drip of minor (and occasional major) misdemeanours. This mornings it was arriving an hour late without notifying us of the delay. Others include not writing in the homecare record book, expecting time sheets to be signed with out the times filled in, and general lack of training.

The relationship between the disabled client and their carers is, as you might imagine, complex. I rely on my team for a series of highly personal tasks, from dressing, washing and going to the toilet, to fitting the ventilator mask at night and charging the wheelchair battery. You want to be friendly but not necessarily friends. You want carers to be efficient and aware of what needs doing but you don't want to take them for granted. When there are problems you need a straight forward way of dealing with them. Often it is not the individual carer who is at fault but rather the support they are getting from their employers. (For example, if a carer is running late it is the responsibility of the office to keep us informed.) When things are going well the quality of life for the client is enhanced. When they aren't the quality of life is eroded, making a difficult situation unbearable.

The agency who employ the carers I use only pay the carers for the hours they work. They get no sick pay, so they will often struggle into work when they are unwell. This is bad for them and positively dangerous for me if they are working with an infectious cold. I have known carers to work morning and night, every single day, week after week, for months on end, reluctant to take a day off because they simply can not afford too. Inevitably many of them crash and burn.

I'd be interested to know the exact employment status of the individual carer. Are they employees? Self-employed? Indentured slaves? Councils employ homecare agencies to fulfil their statutory obligation to provide the service because agencies are cheaper than providing an in-house service. It seems to me that councils turn a blind eye to the exact reasons how and why agencies provide a cheaper service.

And caught in the middle of this exhausting and sometimes exploitative situation are people like myself.

Every night I wear a nasal mask attached to a ventilator. The mask is held In place by a web of straps that can be adjusted to hold the mask at the right tension and in the right position to make a pressurised seal. Over recent nights something has been going wrong. I'm tired and needing the ventilator and perhaps settling for things being done too quickly. The language requirements needed to explain the very slight adjustments required for a perfect fit are beyond me when I am tired and English is often the carer's 3rd or 4th language. The result has been a slightly ill-fitting mask which has made slight abrasions to the inside is my nostrils and the straps have cut into the skin above my ears. I've woken perhaps a dozen times in the night by the pain and tried to make adjustments myself, but have been thwarted by my dodgy left arm. This morning Joyce, one of the carers, observed me and said disapprovingly, “there is blood.” Tonight I will be even more tired.

In many ways I am fortunate. I can articulate my grievances and worries. I have Polly to advocate on my behalf. But I worry for the countless vulnerable people who receive a service that is being parred to the bone and who can not moan and kick up a fuss. I bet their nostrils hurt like hell.