Friday, 25 March 2011

Wagner to Wagner (or Wagner to Wagg-ner)

Well it looks like spring is here at last albeit probably only temporarily. So welcome to 2011's first alfresco blog. The beautiful weather this week has been very welcome although it is frustrating to be confined to the garden and not be able to take myself up to Hampton Court or down by the river. I knew last year that it would be a problem but that doesn't make it any less depressing. We at least have a lovely big garden which isn't overlooked and Tracy works hard to keep it looking its best.

Last weekend was a busy one. My mum's 80th birthday was on Saturday and we had arranged a surprise outing to the Royal Albert Hall to see the London Philharmonic Orchestra perform their Classical Extravaganza concert. We had decided not to take the boys, a decision I started to doubt during the two opening dramatic pieces (The theme from 2001 A Space Odyssey and Holst's Mars, which the boys would have recognised as the Star Wars theme is remarkably similar ). However, an hour in, and having had a couple of operatic numbers I decided we had made the right choice and that 8000 people's afternoon was probably much more enjoyable as a result; Ravel's Bolero is best enjoyed without the accompaniment of Luke's exploding technique of opening his bag of crisps, and I doubt if anyone would have been interested in Jake's opinion about the music from Carmen being "so gay"! It was an excellent concert which ended with an impressive finale including the 1812 Overture complete with canon fire and pyrotechnics. Mum thoroughly enjoyed it and afterwards we came back to ours for a meal.

The boys got their trip out on Sunday when we took them to The X Factor live show at the O2 arena. Having struggled a bit with the journey on Saturday I was having doubts about going to the O2. Over two and a half hours travelling over London's pot-holed, speed humped roads in a wheelchair with no suspension in a car with terrible suspension is not an appealing prospect. Knowing that the Arena's disabled parking is no closer than normal parking, several hundred yards from the venue was also a concern and aware that our return would be too late for the bedtime carer and Tracy would have to do the unfamiliar routine all added to the doubt about going!

I am glad I went though. It was an excellent show featuring 9 of the finalists. All of the acts sang two or three songs and with the exception possibly of Wagner, they performed as well as most established artists do in their respective genres. Ok, Rebecca was still boring to watch but so are most established acts of her type. The boys enjoyed it and much of it was captured on their ipods but I won't  ruin their lives by saying who I saw recording which acts.


Tuesday, 8 March 2011

All Change (again)

Just to make life even friggin harder, my main carer of 11 months has left. She was only obliged to give 2 weeks notice, so she did. As she had a weeks holiday owed, she only had to work for a week, therefore allowing no time to arrange a replacement carer let alone provide training! I don't know who I am more pissed off with; the agency for having inadequate employee contracts or the carer for having no quarms about leaving in a manner that she knew would result in enormous stress and inconvenience for me.

So for two weeks I have had a selection of my relief carers covering full time while they found a new carer. The problem with that is that they are completely unaware of some of the routine and the bits they do know are never done precisely correct because they only do the routine occasionally and therefore I haven't bothered explaining the differences. Trying to explain subtle details to 4 different carers with poor English using eyegaze typing pushes even my patience beyond breaking point.

The new carer started last week and seems nice and her English is excellent but as usual she has no care experience so will have to learn everything. Of course being trained by a relief carer is like the visually impaired leading the blind. Had I not intervened with some persuasive emails, the agency would have had 3 different relief carers training her for just 3 days. I have laboriously written detailed lists of step by step instructions to try and help. The shower routine is particularly detailed, comprising of over 60 instructions. I am without my computer for the whole routine so once I am out of bed I can't tell them anything.

With my call being her 3rd of the day at 9am the training process has meant that she has been arriving at 9:45 and with my usual 45 minute routine taking 90 minutes, I am not getting out of my bedroom until after 11. It was shower day today so I wasn't finished until midday!

I am just about keeping my patience as I slowly type out instructions to do the most basic of tasks like brushing teeth. The new carer is very nice, has perfect English which is really helpful and if she stays, could be one of the best carers I have had, I am sure she will get there, but I just could do without it.

Sunday, 6 March 2011

Be Happy

be happy you can breath
be happy you can walk

be happy you can hug your child
be happy you can talk

be happy that you eat and drink with friends and family
be happy that you aren't the one with bloody MND


The Boys' 10th Birthday, another perspective

The boys' 10th birthday seemed more significant than previous ones. It obviously marked a decade of their lives but it also is a significant milestone for us. Exactly 10 years earlier we had been standing and lying down respectively in St Georges hospital about to undergo an incredible life change. We had no real idea what was ahead of us; it truly was quite a daunting prospect. It would have been an emotional time for anyone, the happiness of their safe arrival and the fear of coping with triplets mixed with the immense sadness for me of my dad passing only a few weeks earlier. I am sure that Tracy shared some of the sadness because she had lost her dad only a couple of years earlier, but knowing that my dad had missed seeing them by so short a time was difficult to accept.

My dad had me and my sister relatively late in life at the age of 49 (when I arrived) and I am know that whilst I wasn't particularly desperate for children at the age of 34, I knew that I wanted to be a younger dad than mine had been. I remember when I was growing up that I was very aware how much older my dad was compared to all of my friends' fathers; being almost 60 when I was 10. The virtues of having an older dad, such as wisdom, experience and financial stability were probably not appreciated by me. I was more aware of him not being able to participate as physically. My dad was a lovely man and an excellent father. He had almost limitless patience and was completely selfless but I knew that I wanted to be more physically involved with my children and be around to see them grow up. I never thought, 10 years ago that I would end up doing neither. And ironically I probably won't get to the same age as my dad when he became a father.

A more positive angle to this is that I DID make it to their 10th birthday; an event I had hoped but suspected I wouldn't see following my diagnosis in 2007. I remember sharing that ambition with many people who had experience of MND and them being very non-commital with an encouraging response. Of course having made it, it seems small consolation.

In 2008 I made a video for the boys while I could still talk and while I could still hold a pen I bought and wrote birthday cards for future years. I had actually forgotten about the cards until three turned up last week. I guess I hadn't necessarily expected to see them being opened.

So, many things were going on in my head on their birthday. The final thought that I had, I wasn't expecting. Their gran had bought the boys suits for them to wear on the formal dinner nights on the cruise in May. The boys tried them on and they all looked gorgeous. But I also just couldn't help thinking 'Now I know what my sons will look like at my funeral'. I hated thinking like that but that's MND for you!