Is There A Clown Doctor In The House?

A few months a go we were watching one of those regional programmes that are usually about cleaning up the local canal or restoring an old theatre or such like. This one was about a group of people who go in to hospitals to visit children and help them come to terms with their conditions, or help explain the procedures they will be going through. They are known as Clown Doctors and use humour, magic and sometimes just plain silliness to to help relax and comfort the children. It turned out these Clown Doctors weren't just a bunch of annoying would be children's entertainers in wigs and red noses but were trained in all manner of things from psychology and infection control to close-up magic and balloon modelling. Personally the idea of someone coming up to my sick bed and asking me to 'pick a card, any card' would make me reach for the pain relief, but I'm not four years old and facing months of chemo.

I turned to remark to Polly something facile about rather having morphine than laughter as my preferred best medicine when I noticed a smile on her face and a far away look in her eyes. “I could do that,” she said. And truth be told I knew she could.

A few weeks later, after an exchange of phone calls and emails, an application form arrived. I say application form but I mean a demand for an autobiography combined with a dissertation on the philosophy of child care. I swear it would be easier for an ex-junkie, militant communist to join MI5 than for a experienced children's entertainer and nursery nurse to become a clown doctor. I know I'm biased but with more than 15 years experience as a story-teller, professional qualifications and real life experience as a nursery nurse both here and abroad, and years of earning a living as a jobbing actor (playing countless parts as cute woodland animals and fairytale creatures) there is no one in the whole country more qualified than Polly for a job like this. She spent hours and hours filling in the form and then dropped in the post.

As you might imagine, following the TV programme, the Clown Doctor people had been swamped with requests for application forms from would be balloon modellers and wig wearing circus wanna-bees. In the end some 375 people actually made it through the form filling and of those a handful were invited to a workshop. Polly was among them. After a morning of finding her inner clown and evolving from the primeval swamp into a dinosaur she was called back for an interview which is where we were up to today.

This morning Polly made her way back to Angel Islington for the interview. There were only six trainee places vacant so I did the “You've done really well to get this far” speech. Later, I received a phone call from her telling me how she had gone mad and been unable to stop talking. “I was surreal even by my standards,” she groaned, “At one stage I was telling them about ready rolled pastry already cut in to circles.” “Why?” I asked. “I don't know,” she wailed. “But after it was over one of the panel asked me where she could get some. Is that a good sign?”

Apparently it was. This afternoon they rang to give her the job though whether for her acting and entertainment skills than for her particular knowledge of frozen patisserie we'll probably never know. Next month she starts a process of training that will last two years. That's an awful lot balloon animals.

Tired

I am so tired. Not very exciting I know, but true nonetheless. The new carer saga is taking its toll. Kalepo and co are lovely people but they are not the experienced carers we were promised and are therefore learning the job on the job, so to speak. The trouble is I don't have the energy to be a training aide. They are getting quicker and better but we are nearly a month in to the handover and I am afraid I lack the confidence that should a crisis occur they would know how to handle it. Although the Muscular Dystrophy has been deteriorating recently my general health has been pretty good but I'm near my coping limit regarding the home care provision. When I wake in the morning a night on the ventilator means my mouth is very dry and talking is next to impossible; issuing instructions such as, “Move my head forward and my shoulder back” and “straighten my left leg and then tilt the bed slightly,” become a challenge only slightly less daunting than a tongue-twister competition. Now throw in the added complication that English is not even Kalepo's second language but his third (after German) and the potential for miscommunication becomes significant. If I become ill, with even a minor ailment such as a cold, my clarity of speech first thing in the morning becomes even harder to understand than a premier league footballer after a night on the town. Interpreting my mumblings into a comprehensible form requires the equivalent linguistic ability of Thomas Young translating the Rosetta Stone. My worry is that if something serious is wrong inexperienced carers won't recognise it, let alone know what to do.

It has been said that any carers coming in to me will have to learn what to do, which is true. But there is a difference between learning how to cope with my specific needs and learning the basic skills such as manual handling and using a hoist. So now I feel guilty for having expressed my concerns officially. I'd hate Kalepo and the others to think I don't trust them – I do. Just not with my life.

High Anxiety

I am not by nature a person who finds life stressful. I am easy going and not inclined to worry unduly about things I can do nothing about. This, given my circumstances, may well be considered a positive trait. So if I tell you that today I am very stressed you will understand that I probably have good reason to be. This morning I had my first glimpse of the new agency that will be taking over my home care. I'm trying to be charitable here, but it was not shall we say, encouraging.

We were being visited by the agency manual handling expert who was coming to observe me getting up and being hoisted, showered and dressed. This was the third attempt, the two previous appointments having been cancelled at short notice, and I was looking forward to meeting members of the experienced and professional team who will soon be integrated in to my life. Two of my regular carers were already here when they arrived and Polly had dashed back from the school run. Soon all five were stood over me in the bedroom. I was introduced to a woman in extremely high heels and a girl, young enough to be my daughter, whom I was told would be coming into me four times a week. The girl gave me a shy smile and that was the last eye contact I had with her for the rest of the visit.

Jerry and Carol went into the familiar routine of getting me up and into the wheelchair. High Heels and Shy Girl looked on as Jerry gave a running commentary explaining exactly what they were doing. Usually copious notes are taken on such occasions. In this case High Heels made a note on the back of her hand in Biro. I made my way to the bathroom and, mercifully, was left to transfer to the loo alone. A little while later I called out that I was ready and Jerry and Carol came in to fit the sling to the hoist. They were half way through when we all began to wonder where the 'observers` were. Carol went to get them. I heard Shy Girl say, “I suppose I'd better see what I'm going to have to do.”

Shy Girl and High Heels sauntered and tottered in to the bathroom and watched as I was flown, Peter Pan like, from the toilet to the shower seat. High Heels made another note on the back of her hand and then she and Shy Girl left. And that was it. Carol and Jerry dared not look at each other or at me. They have always had reservations about the handover and are protective of their clients, I could see they were not impressed but were too professional to say anything.

I may be doing them an injustice. High Heels may be incredibly quick on the up take and able to make assessments at just a quick glance. And for all I know Shy Girl might have a dazzling personality and years of experience. I guess I'll find out. In the mean time I'm just a little bit anxious.

A Pox on your House

Welcome to my blog and we start by plunging into the deep end of family life. What a week! I have two children, both boys, aged 8 and 3. Let's call them M and S. A couple of weeks a go S caught Chicken-Pox. He was miserable and spotty but was soon on the mend. Meanwhile M had just a few spots on his back that barely interfered with his playing on the Nintendo Wii . Soon it was back to school and nursery. All was well until the next day when Polly noticed a couple of new spots on M. Not to worry, you can't catch chicken-pox twice, can you? Apparently you can. M was soon more spot than boy. He had a high temperature and vivid blistering spots everywhere, including one actually on his eyeball. As a result there were a couple of visits to the eye hospital and several virtually sleepless nights for Polly as she dabbed on Calamine lotion and administered Calpol. Now all this might be considered unfortunate but all part of the ups and downs of family life. But...

Polly, for the past six months, has been diligently training for the London Marathon. The marathon is this Sunday and all the training regimes stress the need to get lots of rest. No where does it suggest that 6 hours sleep in 72 is the ideal preparation. A lot is riding on this Sunday. Polly has put in countless hours of training and raised several thousand pounds in sponsorship for the Muscular Dystrophy Campaign. Friends are travelling from all over to come and support her. Unfortunately the poor girl can hardly keep her eyes open. Well, okay says you, kind and concerned reader, surely now is the time to show how much you love her and be the one getting up seven times a night to minister to your sick child. Oh that it was that simple. You see getting in and out of bed is a 20 minute ordeal each way. It involves electric beds, hoists and ventilators. It involves glide sheets and the precise positioning of a wheelchair. It involves a great deal of effort. It is actually easier for Polly to run 26 miles on just a few hours sleep than get me in and out of bed. Besides, M sleeps on the top bunk and I couldn't reach him however much I wanted to.

So if you see an orange clad, small, bobbed haired women sleepwalking the Marathon this Sunday remember that she's actually getting more rest than normal.

Goodbye until next time.