I feel a little as though I am coming out of hibernation. As the weather improves and the temperature slowly climbs I have been able to get out a little more. My mother came to visit and Polly and I took her for lunch at the local garden centre (rock n roll, hey). Then at the weekend I went to collect Sam from a party and also chased the boys around the park on the their bikes. (This took a while because Sam can only ride in a straight line and crashes dramatically at the slightest curve.)
Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.
I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”
Until next time.
Showing posts with label home care. Show all posts
Showing posts with label home care. Show all posts
Monday, 15 March 2010
Monday, 15 February 2010
Still Bumped
In case you were wondering, I'm not in the Royal Bromton Hospital. I was bumped again, presumably by a very sick person whose need was deemed greater than mine. Because this week is half-term and the boys are off school I declined the offer to wait in all week on the off-chance that a bed would become available. Apparently we are going to try again in the first week of March, by which time I will be considered a priority.
Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.
Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.
My hand is hurting so I'll have to stop writing now. Until next time...
Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.
Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.
My hand is hurting so I'll have to stop writing now. Until next time...
Wednesday, 6 January 2010
A Week In The Life
We are now a week into 2010 and this is my first post of the new decade. It has been an interesting week, here are some of the highlights.
On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.
New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.
On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.
January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.
In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.
January 5th – the boys go back to school.
January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.
So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.
Until next time.
On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.
New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.
On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.
January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.
In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.
January 5th – the boys go back to school.
January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.
So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.
Until next time.
Monday, 23 November 2009
Me Versus The Blackberry Storm 2
I am one of those fortunate people who knows instantly what to do when faced with a computer or technology based problem. I call my friend PJ and beg him to sort it out. However, occasionally I am the person called upon to impart wisdom on matters technological. I swear that I have never pretended knowledge of anything more complex, computer-wise, than an abacus but sometimes people mistake my intense concentration when I am writing for computer literacy. My mother, who has one son with a doctorate in computer science who runs a highly successful software company, still prefers to ask me to solve her internet connection problems. My advice usually goes as follows: “Turn everything off, mum. Wait five minutes and then turn everything back on again.”
Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.
Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.
The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.
Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.
The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.
I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.
Until next time.
Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.
Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.
The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.
Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.
The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.
I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.
Until next time.
Monday, 21 September 2009
How To Be Sick And Stupid
Thursday evening: start to feel a bit rough.
Thursday night: Very hot, coughing.
Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.
Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.
Friday afternoon and evening: miserable.
Friday night: coughing, hot, sweaty, anxious.
Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.
Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.
Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.
Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.
More soon, assuming I live. Bye.
Thursday night: Very hot, coughing.
Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.
Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.
Friday afternoon and evening: miserable.
Friday night: coughing, hot, sweaty, anxious.
Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.
Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.
Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.
Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.
More soon, assuming I live. Bye.
Tuesday, 1 September 2009
Unbalanced
Okay, where were we? Back from holiday, that's right. Back from holiday and straight in to a carer crisis. One of my long term carers suddenly started arriving late or not arriving at all. There were, of course, all sorts of reasons, some understandable and some not so. The result, anyway, was that I spent several days stuck in bed for an extra hour or so, or hanging around in the evening, ever shorter of breath, waiting for replacement carers to arrive. The situation has settled down somewhat but I'm still not sure who is going to turn up morning and night.
Further complicating the situation has been my BiPap mask problem. As mentioned last time, I appear to be leaking in deep sleep. The air pushed in to my lungs by the BiPap machine is under pressure and the mask I use is a nasal one. In other words, a mask fits to my nostrils and blasts air up them and in to the lungs, fully inflating them, and thus facilitating O2 and CO2 exchange. The system only works effectively because of the pressure. However, when I am in deep sleep, the muscles in my face relax and the pressurised air short cuts the lungs and escapes via my mouth. The BiPap machine has interpreted this as a leak in the system, it's little computerized brain assuming someone has stuck a pin in the tube or unplugged something in an attempt to assassinate me in my sleep. Although I don't actually die (you'll notice), the effect is, over the long term, a build up of CO2 and resulting headaches and mental sluggishness.
To solve this problem I have been sent, from the Royal Brompton Hospital, various alternative face masks. The first one covered both my nose and mouth, which obviously solved the mouth leaking problem, but was terribly hot and uncomfortable and turned any saliva in to dry, crispy flakes. It also leaked tiny amounts of air around the sides causing occasional high-pitched squeaking sounds. Horrible. The next mask was a full-faced one, covering eyes, nose and mouth. It looked suitable for deep-sea diving. I am not a naturally panicky person but the moment I put this mask on I felt unbearably claustrophobic. My eyes watered and my nose itched and I couldn't touch them because of this plastic casing. I managed nearly two minutes before freaking out and trying, unsuccessfully, to rip the thing from my face. Fortunately Polly came to my semi-hysterical rescue while the carers flapped ineffectually.
So, at the moment, I'm using my old mask with an alternative, non-alarming BiPap machine. Unfortunately this machine is less affective (due to its limited pressure settings) and although I am not being woken by an alarm I am, presumably, still leaking air in deep sleep. This is a situation that can't go on too long. If I start writing complete gibberish (as opposed to the normal nonsense), you can assume my gas levels are unbalanced and I'm being poisoned.
Until next time. . .
Monday, 24 August 2009
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 bo
th 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.
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 bo
th 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.
Friday, 7 August 2009
Of Wales And Wonders
Well, we've had the new car for a week now and it remains unscratched and undented. Polly has discovered Sport on the gear stick and now uses it whenever there is a bend in the road or a hill, or indeed, a tree by the side of the road. She is still getting use to the football pitch length of the vehicle and we have had to massively cut back a bush to get it into our parking space.
We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.
Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.
Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.
We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.
Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.
Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.
Tuesday, 31 March 2009
A Day In The Life
Polly has been off Clown Doctoring at a hospital in London somewhere. I'm not allowed to give you too many details but it involves her speaking in a west country accent and saying 'curly-wurly' a lot. Oh, and she wears a carrot on her shoulder. As she left this morning she called out to me, “Have a good day,” and then she vanished into the metropolis. I settled down for a 'good' day, by which I mean quiet, and booted up the computer to check emails and manage my football team on Facebook.
11.00am The doorbell shrills and shrieks and warbles at aircraft taking off volume to indicate someone has arrived at the front door and wants my attention. I may have mentioned before that our doorbell is VERY loud because I am disabled, and therefore, presumably deaf. (Visitors to the flat who are here when it rings often think it must be a fire alarm and start tying sheets together in the hope of making their escape.) I attempt to use our intercom system to let whoever it is in but this proves easier said than done. It is supposed to operate via an 'environmental control' system but doesn't any more, so I have to manually push buttons on a unit fitted to the wall. On bad days it can take several minutes for me to align myself in such away so as to be able to press first the 'talk' button and then the 'enter' button. Often, by the time I have, whoever it was who rang the bell has grown old and given up. Today is an okay day and I manage to let the visitor in after he has identified himself as an engineer. You can be sure that if he had said 'robber' I would have asked for further identification. The engineer turns out to be from the Royal Brompton Hospital and has come to fix the BiPap ventilator which has been beeeeeeeeeeping all night for no good reason. (Polly maintains that the alarm should only go off if I am seconds away from death, and only then if it has tried to resuscitate me by itself.) 20 minutes later the engineer gives up and replaces the machine.
11.40am The ear-splitting doorbell goes again. Once again I successfully negotiate the entry system and once again someone identifying themselves as an engineer comes in. This one, from a company whose name is made up entirely from initials, has come to fix the back door opener. He has come equipped with a young man whose job it seem is to hold things. It takes an hour of mild cursing and a lot of Allen keys before the automated door stops opening and shutting of its own accord. The young man passes things beautifully.
12.30pm Kalepo, one of my carers, arrives to help me with lunch and to go to the loo. Fortunately he knows how to let himself in so we are spared being deafened by the doorbell.
2.50pm Once more my ears are made to bleed. This time it is a specialist dermatological district nurse. My skin has been erupting in mini-pimples since a change in my medication. I thought I'd left acne back in my adolescence so I am grateful to see him. He has given me a prescription for a number of salves and lotions that should restore my skin to adulthood.
3.20pm The district nurses (or big stick nurses as Sam calls them) let themselves in and help me go to the loo again. They also wrestle with the coffee-maker, a technology they regard as suspiciously futuristic.
3.50pm Our friend Andi arrives back from the school with Matty and Sam. Within seconds they are arguing about whose turn it is to go on the Playstation 3. I do my daddy thing and make them share.
6.00pm Godfrey, another carer, arrives to help me give the boys their tea that has been in the slow cooker since Polly prepared it this morning.. He leaves 50 minutes later.
7.30pm Both boys fed, showered and ready for bed. Sam read The Avocado Baby, Matty surgically removed from computer. I am the daddy! Now, where's Polly?
7.50pm Polly returns, all curly-wurly'd out.
Friday, 27 March 2009
In The Dead Of Night
Tonight is another night nurse night. Things have improve from the earliest encounters. (See here, here, and here, for previous posts about the night nurse saga.) Aside from some rather iffy understanding regarding how electric over-blankets work and me trying to find the doorbell to press and summon the nurse I have made some progress in getting a nights sleep. Polly is also getting a better nights sleep when she moves to the sofa-bed but the jury is still out on whether the disruption is worth it. Mind you, after last night she will probably be grateful for any sleep at all.
I was awoken at 4.30 this morning by an irate Polly. “What is it now?” she demanded of me. “Do you want a painkiller or what?” I swam into wakefulness and croaked, “what?” (I'm not at my most loquacious at that time of morning.) My mouth was sandpaper dry so I asked if I could have a sip of water. The reaction I got was akin to me having asked her to rustle up a grilled sturgeon with peeled grapes on a bed of larks tongue and slipper orchid petals whilst gently massaging my toes in calf-skin mittens. There are US army patented incendiary devices that give off less heat and fury than my beloved wife early this morning. Bemused I responded wittily with another “what?”
Polly stomped around the bed (or rather as she describes it, climbed around the end of the metal framed bedstead, negotiated the air-mattress pump, stubbed her toe on a wheelchair wheel, tripped over the charging cable and caught her hand in a ventilator hose) and shoved a glass under my nose and indelicately inserted a straw between my parched lips.
“Thank you, darling,” I said and prepared to drift off back to sleep. Polly seemed to find this offensive.”Oh no you don't,” she said through gritted teeth. “Five times! Five times you have woken me up. Don't you dare just go back to sleep.” “What?” I replied. (I swear it was all I could think of to say.) “I haven't done anything.” Talk about 'light the blue touch-paper'. She went incandescent. Apparently I had woken her several times through out the night to move my leg, shoulder or arm. I had absolutely no memory of this, I promise you.
Polly listed the catalogue of interruptions she had endured. “ You keep waking me up by shouting Polly, Polly, help me! Help me! Move my shoulder! Help! Help!” When I intimated that she may be exaggerating I inadvertently took my life in my hands. “It's all right for you,” she growled. “You just go straight back to sleep! I, on the other hand, am left wide awake, unable to go back to sleep, because I'm listening out for for your every groan, creek or fart in case you are suffocating or choking or something!”
All I could think to say was “What?”
Polly stomped back around the bed, stubbing her toe on the battery charger, and crashed huffily back under her duvet. “If you just go back to sleep I will poke you with a sharp stick.” I was going to ask her to scratch my shoulder blade but thought better of it. I closed my eyes instead.
So, tonight, as she snuggles down on the sofa-bed, I hope she appreciates the sacrifice I'm making. Instead of simply calling out for help I will have to press the button on my doorbell and wait for the nurse. That's love that is.
Sleep well.
I was awoken at 4.30 this morning by an irate Polly. “What is it now?” she demanded of me. “Do you want a painkiller or what?” I swam into wakefulness and croaked, “what?” (I'm not at my most loquacious at that time of morning.) My mouth was sandpaper dry so I asked if I could have a sip of water. The reaction I got was akin to me having asked her to rustle up a grilled sturgeon with peeled grapes on a bed of larks tongue and slipper orchid petals whilst gently massaging my toes in calf-skin mittens. There are US army patented incendiary devices that give off less heat and fury than my beloved wife early this morning. Bemused I responded wittily with another “what?”
Polly stomped around the bed (or rather as she describes it, climbed around the end of the metal framed bedstead, negotiated the air-mattress pump, stubbed her toe on a wheelchair wheel, tripped over the charging cable and caught her hand in a ventilator hose) and shoved a glass under my nose and indelicately inserted a straw between my parched lips.
“Thank you, darling,” I said and prepared to drift off back to sleep. Polly seemed to find this offensive.”Oh no you don't,” she said through gritted teeth. “Five times! Five times you have woken me up. Don't you dare just go back to sleep.” “What?” I replied. (I swear it was all I could think of to say.) “I haven't done anything.” Talk about 'light the blue touch-paper'. She went incandescent. Apparently I had woken her several times through out the night to move my leg, shoulder or arm. I had absolutely no memory of this, I promise you.
Polly listed the catalogue of interruptions she had endured. “ You keep waking me up by shouting Polly, Polly, help me! Help me! Move my shoulder! Help! Help!” When I intimated that she may be exaggerating I inadvertently took my life in my hands. “It's all right for you,” she growled. “You just go straight back to sleep! I, on the other hand, am left wide awake, unable to go back to sleep, because I'm listening out for for your every groan, creek or fart in case you are suffocating or choking or something!”
All I could think to say was “What?”
Polly stomped back around the bed, stubbing her toe on the battery charger, and crashed huffily back under her duvet. “If you just go back to sleep I will poke you with a sharp stick.” I was going to ask her to scratch my shoulder blade but thought better of it. I closed my eyes instead.
So, tonight, as she snuggles down on the sofa-bed, I hope she appreciates the sacrifice I'm making. Instead of simply calling out for help I will have to press the button on my doorbell and wait for the nurse. That's love that is.
Sleep well.
Friday, 13 March 2009
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.
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.
Wednesday, 11 March 2009
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.
Friday, 6 March 2009
Ask And It Shall Be Given Unto You
As you will have gathered, if you have been reading this blog for any length of time, that I have had certain issues with what we in the business of being disabled call my care package. The care package, as you will have deduced from its title, is the whole bundle of different factors that go into keeping me functioning as a fully-fledged burden on society. This package includes GPs, district nurses, social services, occupational therapists, the Primary Care Trust (PCT), home care agencies and Uncle Tom Cobbley and all. Coordinating this disparate group of agencies requires the administrative abilities of Paris Hilton's publicist.
The recent deterioration in my condition has, in combination with changes in the provision of the care package, resulted in a degree of misery for both Polly and myself. Trying to manage everything has become too much. For example, with me needing help feeding myself, tea takes longer but the boys still need to be showered and in bed at a decent time on a school night. We needed some extra help around bedtime to get things ready before the carers arrived to tuck me in and read me my bedtime story. It took significant negotiation to arrange for one of the carers to come half an hour early. Or, that as my medication wears off at around 3am I wake up in pain. A change of medication might help but equally a different kind of air mattress might be the solution. We need to liaise with the doctor, the occupational therapist and the PCT for funding a change of bed. Disturbed nights are taking their toll on Polly, so we need some kind of occasional night care. Carers don't work past 10 o'clock so night nurses are needed, but who pays for them? And so it goes on and on. One change leading to another and more and more agencies needing to be juggled. One agency can't work independently of the others but it seems almost impossible to get them to communicate with each other.
Until now.
On Thursday morning the great and the good gathered in our living room. My GP, Dr Toosy was there, as was Tina the District Nurse who is also my care manager, Karen from the PCT continuing care team came with her cheque book, Valeria from social services was there to represent Polly's interests as the primary carer and Valerie, an Occupational Therapist completed the assemblage. Polly had been up until 1.30am typing up a statement and list of objectives.
The opening statement read -
The statement focused everyone's attention and the list of objectives Polly had prepared kept us to an agenda. Firstly we dealt with some of the night time issues. Dr Toosy agreed to review my medication regime and the OT agreed to look into a new bed and air mattress which the PCT agreed to fund. Next we looked at meal times. Extra help has been arranged which will increase the range of food I can eat, especially at breakfast, and provide assistance for me to prepare meals for myself and the boys when Polly is working. Funding is also being organised for the Neater Arm device (see the I, Robot post) which will vastly increase my ability to feed myself. Some night time care has been organised to give Polly some respite and also to allow us some kind of evening social life (babysitters not withstanding). And the possibility of respite care and family respite holidays is being looked in to.
More was achieved at this meeting than had been achieved by countless hours of phone calls, letters, emails and meeting with individuals over the last year. I can't thank those who came enough. It was truly gratifying seeing all these disparate agencies working smoothly together, efficiently getting things done. It is also reassuring to find that they really do want to help. Having the OT who has to organise something in the same room as the doctor who says it is necessary and the person who has the authority to arrange the funding for it is amazing, and surely a model for how things should be done. Special thanks to Tina for coordinating everyone.
Obviously we have yet to see how the results of the meeting pan out. I'm sure there will be some tweaking that needs doing before it all runs smoothly but it feels as though some real progress has been made.
After the meeting I felt quite mentally and emotionally drained. It is difficult being at the centre of such intense attention, even if it is for my own benefit. I know Polly felt likewise. We we were both wound up for battle and then found everyone being terribly nice and agreeable. It was disconcerting. I think we were a little hysterical when we began to wonder how far we could have pushed things.
“I want all the care staff to dress in lavender and sing Abba songs,” I suggested. “I want a pig and a stick with which to poke it,” added Polly. We had lunch to calm down.
I will, of course, keep you informed as to how it all works out.
The recent deterioration in my condition has, in combination with changes in the provision of the care package, resulted in a degree of misery for both Polly and myself. Trying to manage everything has become too much. For example, with me needing help feeding myself, tea takes longer but the boys still need to be showered and in bed at a decent time on a school night. We needed some extra help around bedtime to get things ready before the carers arrived to tuck me in and read me my bedtime story. It took significant negotiation to arrange for one of the carers to come half an hour early. Or, that as my medication wears off at around 3am I wake up in pain. A change of medication might help but equally a different kind of air mattress might be the solution. We need to liaise with the doctor, the occupational therapist and the PCT for funding a change of bed. Disturbed nights are taking their toll on Polly, so we need some kind of occasional night care. Carers don't work past 10 o'clock so night nurses are needed, but who pays for them? And so it goes on and on. One change leading to another and more and more agencies needing to be juggled. One agency can't work independently of the others but it seems almost impossible to get them to communicate with each other.
Until now.
On Thursday morning the great and the good gathered in our living room. My GP, Dr Toosy was there, as was Tina the District Nurse who is also my care manager, Karen from the PCT continuing care team came with her cheque book, Valeria from social services was there to represent Polly's interests as the primary carer and Valerie, an Occupational Therapist completed the assemblage. Polly had been up until 1.30am typing up a statement and list of objectives.
The opening statement read -
As a family Stephen and I have always tried to maintain our independence, and addressed any issues around Stephen's condition as necessary. Until this time we have, through good relationships with all of the professionals involved, had a mostly positive experience regarding Stephen's care needs. During Stephen’s time in the social care sector we had a fairly consistent approach to Stephen's care. We felt independent and empowered by the decisions we made and more importantly we were able to live a “normal” family life.
Under the current medical model we have found ourselves left floundering, with Stephen's condition regarded as needing nursing care we are working within a system which has no ability to see Stephen's needs as anything other than medical.
At a time when we as a family have to come to terms with dramatic changes in Stephen’s condition, we are also having to fight for any help, or indeed a voice. We feel let down and manipulated by this change, and feel a total inability to access a changing level of care, which addresses both Stephen’s needs, and those of our family.
I personally feel I have been cast in a role of carer, which negates any other, such as wife, or mother, or provider that is something, that is for both of us quite unacceptable.
I have also felt that I have had to question my own ability to care for someone I love, and have been brought at times over the past months to feel I could no longer cope. However,when I have voiced these concerns, I have felt that no real help has been offered or worse coerced into continuing by being offered solutions such as residential care. Which is something we do not want to consider.
When the quality of the memory’s you build for your children is defined within funding budgets, when your life is dictated by decisions made by PCTs, when even your most basic of human needs has to be met by someone, you find yourself in a position where you need to ask others for help…
That is why we asked you all here today, so that together we can find a creative ways of addressing Stephens care needs and redressing the balance of Stephen's changing condition as being part of, but not all of who we are.
The statement focused everyone's attention and the list of objectives Polly had prepared kept us to an agenda. Firstly we dealt with some of the night time issues. Dr Toosy agreed to review my medication regime and the OT agreed to look into a new bed and air mattress which the PCT agreed to fund. Next we looked at meal times. Extra help has been arranged which will increase the range of food I can eat, especially at breakfast, and provide assistance for me to prepare meals for myself and the boys when Polly is working. Funding is also being organised for the Neater Arm device (see the I, Robot post) which will vastly increase my ability to feed myself. Some night time care has been organised to give Polly some respite and also to allow us some kind of evening social life (babysitters not withstanding). And the possibility of respite care and family respite holidays is being looked in to.
More was achieved at this meeting than had been achieved by countless hours of phone calls, letters, emails and meeting with individuals over the last year. I can't thank those who came enough. It was truly gratifying seeing all these disparate agencies working smoothly together, efficiently getting things done. It is also reassuring to find that they really do want to help. Having the OT who has to organise something in the same room as the doctor who says it is necessary and the person who has the authority to arrange the funding for it is amazing, and surely a model for how things should be done. Special thanks to Tina for coordinating everyone.
Obviously we have yet to see how the results of the meeting pan out. I'm sure there will be some tweaking that needs doing before it all runs smoothly but it feels as though some real progress has been made.
After the meeting I felt quite mentally and emotionally drained. It is difficult being at the centre of such intense attention, even if it is for my own benefit. I know Polly felt likewise. We we were both wound up for battle and then found everyone being terribly nice and agreeable. It was disconcerting. I think we were a little hysterical when we began to wonder how far we could have pushed things.
“I want all the care staff to dress in lavender and sing Abba songs,” I suggested. “I want a pig and a stick with which to poke it,” added Polly. We had lunch to calm down.
I will, of course, keep you informed as to how it all works out.
Tuesday, 13 January 2009
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.
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.
Saturday, 10 January 2009
Don't Swear At The Carers
I shouted at my carers last night. I'm not at all proud of this but all I can say in mitigation was that I was in pain, finding it difficult to breathe and that we were doing nothing that we don't do every night. So why we were in such a mess? I don't know.
As has been mentioned on countless occasions in this blog already, I use a BiPap ventilator at night. Effectively what this bit of kit does is ensure I take deep enough breaths all night to expel the build up of CO2. The BiPap pumps air, under pressure, via a hose to a nasal mask that is strapped to my face. Every night we fit the mask. Every bloody night I explain which way up it goes. Last night, one of the carers, let's call her Woburn to spare her blushes, not only failed to fit the mask, but in her panic managed to break it in to it's component pieces even as it was being painfully yanked about my face.
At this point I must explain that I have an irrational fear of anything that obstructs my breathing. Months spent in Intensive Care on ventilation have left me highly aware of just how fragile my respiratory system is. The rational part of me knows that I will not suffocate if carers mess around with my mask, but several close shaves in the past means that the irrational part of me kicks in and I find it massively stressful. Woburn has fitted the mask on many occasions over the last six weeks or so, but every night it's as if it's the very first time she has ever seen the damn thing. Last night, as the mask disintegrated in her hands, I freaked out and told everyone to f**k off.
Inevitably Polly was called to sort it out. The poor girl has been working incredibly long hours doing her Clown Doctor training this week but yet again she had to step in and do the care teams job.
It says a lot about how I feel about the situation that I am actually relieved that Carlotta is back tonight. She may be a bit loopy and prone to attempting to heal me using psychic energy, but at least she is reasonably competent and is really trying to be a good carer.
As has been mentioned on countless occasions in this blog already, I use a BiPap ventilator at night. Effectively what this bit of kit does is ensure I take deep enough breaths all night to expel the build up of CO2. The BiPap pumps air, under pressure, via a hose to a nasal mask that is strapped to my face. Every night we fit the mask. Every bloody night I explain which way up it goes. Last night, one of the carers, let's call her Woburn to spare her blushes, not only failed to fit the mask, but in her panic managed to break it in to it's component pieces even as it was being painfully yanked about my face.
At this point I must explain that I have an irrational fear of anything that obstructs my breathing. Months spent in Intensive Care on ventilation have left me highly aware of just how fragile my respiratory system is. The rational part of me knows that I will not suffocate if carers mess around with my mask, but several close shaves in the past means that the irrational part of me kicks in and I find it massively stressful. Woburn has fitted the mask on many occasions over the last six weeks or so, but every night it's as if it's the very first time she has ever seen the damn thing. Last night, as the mask disintegrated in her hands, I freaked out and told everyone to f**k off.
Inevitably Polly was called to sort it out. The poor girl has been working incredibly long hours doing her Clown Doctor training this week but yet again she had to step in and do the care teams job.
It says a lot about how I feel about the situation that I am actually relieved that Carlotta is back tonight. She may be a bit loopy and prone to attempting to heal me using psychic energy, but at least she is reasonably competent and is really trying to be a good carer.
Tuesday, 6 January 2009
The Healing Power Of Homecare
One of the best things about writing a blog is that when strange or exasperating things happen to you you at least have the compensation of thinking that it will make for an interesting post. I've been thinking this a lot recently.
With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.
Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.
Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.
Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.
Thank you for reading.
P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.
With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.
Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.
Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.
Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.
Thank you for reading.
P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.
Saturday, 3 January 2009
Polly Come Quick - It Broke
Cast your mind back all the way to new years eve. As the country prepared to party and light overly loud fireworks Polly and I, exhausted from and at the whim of a week of temporary carers, prepared for a reasonably early night. Carlotta and Abby arrived and got in each others way but somehow got me ready for bed. But then the familiar cry went out, “Polly, Polly, quick. Come!”
The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.
Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”
The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.
Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.
One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'
The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.
Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”
The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.
Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.
One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'
Thursday, 1 January 2009
It's Lovely - Did You Keep The Receipt?
Happy New Year.
It's been a long week. Christmas day seems a long time ago now. And the dust has finally settled. In my defence I would like to say that I have a pretty good record of present giving. In the last few months we've had a 15th wedding anniversary (perfume) and a 40th birthday (artwork) and now Christmas. I gave Polly some magic tricks that she wanted for her clown doctoring and the latest book in the No. 1 Ladies' Detective Agency series that she loves. I also gave her a Tefal ActiFry Low Fat Electric Fryer. She took one look at it and said, “Oh lovely, a chip pan.” There was a pause while icicles formed before she asked, “did you keep the receipt?” Apparently what I really meant to give her was some rather expensive face cream.
We spent Christmas day at my brother Simon's house where the Deal clan had gathered. My sister-in-law Jaspreet had prepared a fabulous dinner of which the centre piece was a 5 bird roast which as best I can work out consisted of a fresh Turkey breast, stuffed with Chicken, stuffed with Duck, stuffed with Guinea Fowl, stuffed with Wood Pigeon. The boys were in ecstasy having received from overly indulgent relatives various electronic games machines including a Wii Fit, Nintendo DS's and joy of joys, a Playstation 3. Even as I write Matty is busy playing with. . . some Lego. (Some toys are timeless.)
Polly gave me a beautiful print by a local artist of Carshalton pond and a Bill Bailey DVD. Among other wonderful and generous gifts, I received from my sister Helena and brother-in-law Andrew a gadget designed especially with me in mind, a Sony Reader. I now can carry an entire library with me at all times. I find I can read much faster when I don't have to fiddle with turning pages. Wonderful.
Boxing day was delightfully quiet but of course not everything has gone smoothly. Kalapo, one of my regular carers has gone home to Nigeria for Christmas and Godfrey, the other regular, has been very unwell. As I result I've been left with two sweet, but rather scatty women, neither of whom have a full grasp of English (or indeed caring). The week has been full of perilously dangerous transfers and shrieks of “Polly, Polly, come help. Quick!” I've run out of ways to explain how to fit the foot-plates to the wheelchair and I've been too scared to have a shower all week. Carlotta saying “I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry,” is no compensation for a broken leg.
Today, New Years day, we forsook the carers and Polly got me up and gave me a much needed shower in half the time that the women take to give me a wash. So I've started 2009 all clean and shiny. My new years resolution is to only buy Polly presents that don't cook food.
It's been a long week. Christmas day seems a long time ago now. And the dust has finally settled. In my defence I would like to say that I have a pretty good record of present giving. In the last few months we've had a 15th wedding anniversary (perfume) and a 40th birthday (artwork) and now Christmas. I gave Polly some magic tricks that she wanted for her clown doctoring and the latest book in the No. 1 Ladies' Detective Agency series that she loves. I also gave her a Tefal ActiFry Low Fat Electric Fryer. She took one look at it and said, “Oh lovely, a chip pan.” There was a pause while icicles formed before she asked, “did you keep the receipt?” Apparently what I really meant to give her was some rather expensive face cream.
We spent Christmas day at my brother Simon's house where the Deal clan had gathered. My sister-in-law Jaspreet had prepared a fabulous dinner of which the centre piece was a 5 bird roast which as best I can work out consisted of a fresh Turkey breast, stuffed with Chicken, stuffed with Duck, stuffed with Guinea Fowl, stuffed with Wood Pigeon. The boys were in ecstasy having received from overly indulgent relatives various electronic games machines including a Wii Fit, Nintendo DS's and joy of joys, a Playstation 3. Even as I write Matty is busy playing with. . . some Lego. (Some toys are timeless.)
Polly gave me a beautiful print by a local artist of Carshalton pond and a Bill Bailey DVD. Among other wonderful and generous gifts, I received from my sister Helena and brother-in-law Andrew a gadget designed especially with me in mind, a Sony Reader. I now can carry an entire library with me at all times. I find I can read much faster when I don't have to fiddle with turning pages. Wonderful.
Boxing day was delightfully quiet but of course not everything has gone smoothly. Kalapo, one of my regular carers has gone home to Nigeria for Christmas and Godfrey, the other regular, has been very unwell. As I result I've been left with two sweet, but rather scatty women, neither of whom have a full grasp of English (or indeed caring). The week has been full of perilously dangerous transfers and shrieks of “Polly, Polly, come help. Quick!” I've run out of ways to explain how to fit the foot-plates to the wheelchair and I've been too scared to have a shower all week. Carlotta saying “I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry,” is no compensation for a broken leg.
Today, New Years day, we forsook the carers and Polly got me up and gave me a much needed shower in half the time that the women take to give me a wash. So I've started 2009 all clean and shiny. My new years resolution is to only buy Polly presents that don't cook food.
Friday, 12 December 2008
They Came From The Sky
“There are some men here,” said Godfrey, my carer, shaking me awake. “They come from Sky.” At last! I thought. Aliens. I always knew Erich von Daniken wasn't completely bonkers. “They have come to install cable.” It was 8.45 this morning. Not exactly the crack of dawn I know, but I was still half asleep. “Shall I let them in?” Godfrey was looming over me. Aliens wanted to install cable in my home. They come from outer-space and they come with power tools. Hang on..,
A few weeks ago I had made a terrible mistake and endangered my marriage by allowing a TV aerial socket to be installed in completely the wrong place. (See The Wrong Thing.) Now the contractors were back to make good my calamitous error by moving the socket to a Polly approved location and installing another in the bedroom. Godfrey continued to stand patiently awaiting instructions. I dimly recalled Polly saying they were coming today, but she would never have arranged for them to come before 10.30am, because she knows that it can take until then for the carers to prise me from my bed, get me up, washed and dressed and infuse me with jet black coffee. I blinked at Godfrey a couple of times and tried to speak. All that came out was a croak. My mouth in the morning, after a night on the ventilator, is drier than a camels sense of humour. Godfrey gave up. “I will tell them they have to wait.”
Some 20 minutes later, as Godfrey and Abby eased a jumper over my head, I asked where the contractors were. The flat was eerily silent: “They wait,” said Godfrey. Abby nodded in confirmation. I wheeled down the hallway and into the living room. It was empty. I glanced through the window. There, in the garden, stood three men, huddled together in the drizzle. The electrically operated gate had swung closed, trapping them like exotic zoo specimens in an outdoor enclosure. They watched morosely, through the window as Abby struggled to fit the footplates on to the wheelchair and Godfrey brought in a large mug of steaming coffee and placed it carefully on the table. Satisfied that all was ready he went to the door, unlocked it and opened it. “You may come in now,” he said to the three shivering workmen, loaded down with drills and co-axil cable, and who were, inevitably Polish, with barely enough English between them to ask if you needed a conservatory built. They glowered at Godfrey who smiled benignly back at them. “He is ready now. You may start.”
I haven't been able to check the socket in the bedroom yet. I won't be surprised if it only receives Polish reality TV documentaries about paint drying.
A few weeks ago I had made a terrible mistake and endangered my marriage by allowing a TV aerial socket to be installed in completely the wrong place. (See The Wrong Thing.) Now the contractors were back to make good my calamitous error by moving the socket to a Polly approved location and installing another in the bedroom. Godfrey continued to stand patiently awaiting instructions. I dimly recalled Polly saying they were coming today, but she would never have arranged for them to come before 10.30am, because she knows that it can take until then for the carers to prise me from my bed, get me up, washed and dressed and infuse me with jet black coffee. I blinked at Godfrey a couple of times and tried to speak. All that came out was a croak. My mouth in the morning, after a night on the ventilator, is drier than a camels sense of humour. Godfrey gave up. “I will tell them they have to wait.”
Some 20 minutes later, as Godfrey and Abby eased a jumper over my head, I asked where the contractors were. The flat was eerily silent: “They wait,” said Godfrey. Abby nodded in confirmation. I wheeled down the hallway and into the living room. It was empty. I glanced through the window. There, in the garden, stood three men, huddled together in the drizzle. The electrically operated gate had swung closed, trapping them like exotic zoo specimens in an outdoor enclosure. They watched morosely, through the window as Abby struggled to fit the footplates on to the wheelchair and Godfrey brought in a large mug of steaming coffee and placed it carefully on the table. Satisfied that all was ready he went to the door, unlocked it and opened it. “You may come in now,” he said to the three shivering workmen, loaded down with drills and co-axil cable, and who were, inevitably Polish, with barely enough English between them to ask if you needed a conservatory built. They glowered at Godfrey who smiled benignly back at them. “He is ready now. You may start.”
I haven't been able to check the socket in the bedroom yet. I won't be surprised if it only receives Polish reality TV documentaries about paint drying.
Wednesday, 12 November 2008
Grit In The Shoe Of Life
Continuing with the moany old git theme. Disability is rubbish. Let's face it, very very few would decide to opt for it as a lifestyle of choice. Yes, I know that I should accentuate the positive and eliminate the negative and all that, but all in all, I think most of us would agree that we'd forego the advantages of a blue badge in exchange for dropping the dis in disability. However, despite the assurances of Falwell. Bakker, Swaggart, Oral Roberts, et al, faith and an open heart are no match for genetics or a severed spinal cord, and we have to live with the cards we've been dealt. Moaning does no one any good. (Long time readers of this blog are now raising eyebrows and wondering where I'm going with this.) So, in complete acceptance that it will make no difference whatsoever, here are 3, non-medical, things that irritate me about my personal situation. All are minor, all are merely the grit in the shoe of life.
Talking to navels
As a wheelchair user I spend a great deal of time talking to peoples midriffs. This is usually because people stand to close and I am either forced to stare straight ahead and address their waists or crotches depending on their height, or crane my neck and talk to their chins. Step back, or better yet, sit down if you wish to engage me in conversation. Sometimes, when I have the space, I play a little game. I move my chair away from the person a couple of feet or so to make easier eye contact, if for some reason they step forward and close the gap I wait a moment and then move again. If they close the gap I move again, keeping the conversation going. The aim of the game is to move the person from the starting point to the target point, which may be the other side of the room, the buffet or, indeed, the exit. In the past I've managed the full length of a school hall.
Being Grateful
When you are severely disabled you spend a lot of time saying thank you. Because you are reliant on other people for so much you feel obliged to express appreciation. This is because you don't wish to appear to take their assistance for granted, but, just occasionally, you run low on gratitude. I was once working in Madrid when my Spanish host expressed astonishment at how often the British say please and thank you. “You buy a cup of coffee. You say to the waitress 'please may I have a cup of coffee, thank you.' She says yes. You say thank you. She brings the coffee. You say thank you. You say 'how much, please?' She tells you. You say thank you. You give her money and say thank you. She takes the money, you say thank you. She offers you the change, you say thank you. You take the change from her and say thank you. And then you don't say good bye. You say thank you.” Sometimes it feels as if my whole life is a transaction for a cup of coffee. “Please can you move my foot. Thank you.” “Please can you help me cut this steak. Thank you.” “Please can you hurry with the hoist because I'm dying to go to the loo. Thank you.” “Please can I have my computer so I can moan about you. Thank you.” “Oh, and please may I have a cup of coffee. Thank you.” Please don't misunderstand me, I am sincerely grateful and appreciative of the help and support I receive, I couldn't live without it. It's not as if I could make my own coffee with out having to express thanks and gratitude to the staff at the local burns unit. Thank you for reading.
In your own time
This, in many ways, follows on from the last one. I spend a lot of my life waiting for people. I wait each morning for carers to arrive and get me up. They usually arrive at the agreed time but occasionally things beyond their control get in the way. (Damn that elderly man for needing an ambulance.) I wait for it to be convenient for someone to make me coffee. Recently I had to wait for district nurses to come and help me go to the loo. This weekend Polly is going away for a girly weekend. We rang the district nurses to organise them to come in. They said yes, of course they'd come. Once. Once in twelve hours. We've sorted something out but no thanks to them. I wait for carers to help me get to bed. This time they tend to arrive earlier than I would care for them to. Last Monday I went to see Quantum of Solace at the local multiplex. The film ended (with explosions and a can of motor oil) at 8.50pm, not too late for a grown up I think you'll agree, but by the time I got home at just after 9.00 there were 2 carers waiting for me. Then I felt guilty for keeping them waiting. Now I know that we all have responsibilities and are interdependent on others, but sometimes my dependency grates on me. Now, you see? I'm being terribly ungrateful. Next thing you know I'll be talking to your crotch.
Talking to navels
As a wheelchair user I spend a great deal of time talking to peoples midriffs. This is usually because people stand to close and I am either forced to stare straight ahead and address their waists or crotches depending on their height, or crane my neck and talk to their chins. Step back, or better yet, sit down if you wish to engage me in conversation. Sometimes, when I have the space, I play a little game. I move my chair away from the person a couple of feet or so to make easier eye contact, if for some reason they step forward and close the gap I wait a moment and then move again. If they close the gap I move again, keeping the conversation going. The aim of the game is to move the person from the starting point to the target point, which may be the other side of the room, the buffet or, indeed, the exit. In the past I've managed the full length of a school hall.
Being Grateful
When you are severely disabled you spend a lot of time saying thank you. Because you are reliant on other people for so much you feel obliged to express appreciation. This is because you don't wish to appear to take their assistance for granted, but, just occasionally, you run low on gratitude. I was once working in Madrid when my Spanish host expressed astonishment at how often the British say please and thank you. “You buy a cup of coffee. You say to the waitress 'please may I have a cup of coffee, thank you.' She says yes. You say thank you. She brings the coffee. You say thank you. You say 'how much, please?' She tells you. You say thank you. You give her money and say thank you. She takes the money, you say thank you. She offers you the change, you say thank you. You take the change from her and say thank you. And then you don't say good bye. You say thank you.” Sometimes it feels as if my whole life is a transaction for a cup of coffee. “Please can you move my foot. Thank you.” “Please can you help me cut this steak. Thank you.” “Please can you hurry with the hoist because I'm dying to go to the loo. Thank you.” “Please can I have my computer so I can moan about you. Thank you.” “Oh, and please may I have a cup of coffee. Thank you.” Please don't misunderstand me, I am sincerely grateful and appreciative of the help and support I receive, I couldn't live without it. It's not as if I could make my own coffee with out having to express thanks and gratitude to the staff at the local burns unit. Thank you for reading.
In your own time
This, in many ways, follows on from the last one. I spend a lot of my life waiting for people. I wait each morning for carers to arrive and get me up. They usually arrive at the agreed time but occasionally things beyond their control get in the way. (Damn that elderly man for needing an ambulance.) I wait for it to be convenient for someone to make me coffee. Recently I had to wait for district nurses to come and help me go to the loo. This weekend Polly is going away for a girly weekend. We rang the district nurses to organise them to come in. They said yes, of course they'd come. Once. Once in twelve hours. We've sorted something out but no thanks to them. I wait for carers to help me get to bed. This time they tend to arrive earlier than I would care for them to. Last Monday I went to see Quantum of Solace at the local multiplex. The film ended (with explosions and a can of motor oil) at 8.50pm, not too late for a grown up I think you'll agree, but by the time I got home at just after 9.00 there were 2 carers waiting for me. Then I felt guilty for keeping them waiting. Now I know that we all have responsibilities and are interdependent on others, but sometimes my dependency grates on me. Now, you see? I'm being terribly ungrateful. Next thing you know I'll be talking to your crotch.
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