Daddy

I don't feel that you know enough about Daddy yet, so this is dedicated solely to him. This one is all about you Daddy!

Daddy used to work at the Telegraph, he then went on to become Account Manager for Technical Indexes, then Redstone Telecom as Business Channel Manager. After leaving there he moved to ED Telecom as European Channel Director he was then head hunted to go to Vartec. In 2000 Mum and Dad purchased our French house (Normandy near Mt St Michel) and spent many a holiday camping out and renovating it. Dad worked as Sales Director for VarTec, a telecoms company. He was approached by them to set up their new business in France and Europe. But they needed 6 months to get the house liveable and us (then aged 14, 11, 8 and 5) settled into school. So in April 2004 we sold our house in Clifton Road, Mum resigned from her part time job as School Secretary at St Marie’s Infant School, Dad took a sabbatical and we moved to France to live. Unfortunately in the meantime VarTec sold out to TalkTalk and the French business idea was scrapped!So Daddy reinvented him self and became a Business Consultant and began to lecture at the local “Ivy League” University.In 2007 Mum and Dad set up a business, in France, to buy, renovate and sell properties.

Daddy was diagnosed with Motor Neurone Disease in October 2008 (the same month Grandad passed away) and the restricted use of his hands meant that he was unable to work. Around April 2010 he became unable to drive, dress, wash or feed himself - his hands and arms had become 'paralysed'. In the August he had 3 nasty falls, these resulted in a number of stitches to his face and head, and his deterioration accelerated from that time.

By early January 2011 he was finding it very difficult to walk and began to use a wheelchair, particularly outside. When walking around the house We had to walk with him, he was unable to get up from or sit down in a chair, he could not get into or out of bed and couldn't sit up by himself. He seemed to be « fine » with Mum helping him, and he would let the boys walk with him and help him get up. But he wouldn't let me help. At the time I would get really upset about it. I thought that maybe I was doing it wrong or hurting him. Now I realise that, that wasn't the case... I am his only daughter, his job is to protect me, to help me. And he couldn't bare the fact that the roles had been switched. Even though he was struggling to walk, he still wanted to protect me and shield me from that pain. We purchased a "hospital" bed and a couple of raiser/recliner chairs which made him more comfortable.

In May 2011 he had an operation to put a tube into his stomach as it was becoming very difficult for him to eat and swallow safely This worked well and he was maintaining his weight. At this time he was already having difficulty with his speech and we were using an alphabet board to communicate.

On the 29th June 2011 he was rushed into hospital as he was having breathing difficulties caused by a severe chest infection. On 1st July he had a Tracheotomy, this meant he would never again be able to speak. It was hoped that he would be able to support his own breathing but this was not to be the case and he has been on a ventilator / life support machine ever since. As Daddy was critically ill and spent about 55 days in Intensive Care, the hospital is 22 km from our house so this made things even more difficult for the family. He was transferred to our local hospital and finally came home after 83 days in total in hospital. I will come back to this time in my next article.

We have set up a mini hospital in the sitting room so that he is in the middle of the family not shut away in a bedroom. Dad permanently in bed, attached to the life support machine and in addition we have another ventilator on standby for any breakdowns, plus an oxygen machine to deliver oxygen to the ventilator. We also have a suction machine as he needs aspiration many times during the day and night and a pump which delivers his food, plus boxes of supplies, medicines, food packs and spare oxygen cylinders...

Although he has special patches which help to reduce the amount of saliva produced he still needs aspiration a few times every hour. Mum sleeps on a daybed beside him so that she is on hand quickly when he needs aspiration in the middle of the night and she cannot leave him in the alone in the room at any time. Most weeks Mum could only leave the house for 2 hours max on a Saturday afternoon when Sam or I were at home and the nurses due for the afternoon visit. Nurses come in for 1 hour in the morning and again in the evening, for the rest of the day and night Mummy looks after him herself.

Dad has been quite unwell and has had a lots of nasty infections. At the moment he seems to require constant aspiration and the doctor and nurses are very concerned about further infection. He is constantly very tired and spends most of the day sleeping or trying to watch tv or a movie with out falling asleep and missing the end !

What some people don't understand is that he can still communicate with us. He is still there. He may be paralysied but that doesn't mean that his brain h as stopped working. Once people have got that, then comes the question « But how ? He can't speak, and he can't use his hands... ? » Well it's simple, we communicate using an alphabet board with Dad raising an eyebrow to indicate the letters, this has worked well although his eyes are getting weaker... 

 

I like to think that we have a special connection, I am sure we are telepathic (him to me, and me to him. We don't hear random peoples thoughts don't worry !!!:-P). For Mum's birthday, wedding anniversary, mother's day.. I sense what he want's me to get for her. What sort of flowers and what size bouquet... (or maybe I just know him so well that I know what he needs/wants...)

You know how your parents had the « look ». You know the one I'm talking about, the one that made you put the felt-tip down and stop drawing on your brother/sister/table/wall... Well he can still do that !! He has a few different ones. So there is the « Stop it now or you will be in trouble », the « You are in big big trouble », the « calm down and stop fighting », the « Well done, I am proud of you ! » the « I've just told you that I was an olympic show jumper, but that was I huuuuuge lie ! » the « that's so funny » and my favorite out of all of them. The « I Love You »

We have managed to find an English nurse, who we pay to come one afternoon a week to be with Dad, so that Mum can go out and do the supermarket shop, or any appointments or meetings regarding the boys.  The rest of the time she is pretty much confined to the house, not even able to get out to hang the washing out as she would not be able to hear any of the emergency alarms indicating there was a problem...

I think you have had enough to read for one article. So we will end this one here and start on a new one.

Thanks for reading and sharing 

XOXO