How do you cope when someone in your family becomes sick or disabled?
This is exactly the question that I found myself asking back in 2003 when my husband was diagnosed with a rare incurable brain condition called IH (Intracranial Hypertension).
This wasn’t meant to happen!
Why? Why us?
Why MY husband? After all he was never ill!
Now here he was being diagnosed with an invisible condition that was so disabling, and yet to the outside world he still looked fine. This caused people to misunderstand him, after all if he looked ‘fine’ then he should be able to do everything he could do before, shouldn’t he? So why was he now spending half his life in bed, in constant pain? We asked the Doctors ‘why?’ but in my husband’s case there were no reasons why. “It’s just one of those things” we were told.
When you settle down and have children you expect your lives to be ‘happy ever after.’ You appreciate that there might be ups and downs along the way, but when your partner is diagnosed with a long term illness or becomes disabled it shakes you to your core. Everything changes and it’s out of your control.
Initially it was incredibly difficult for us to cope with, my husband had to retire from a successful teaching career which he adored and I had to give up my job to become a carer. Life as we had known it ceased to exist. We soon realised how much we had taken for granted over the years – our health being one major thing we took for granted. Now we had to plan everything to the last detail, always having a contingency plan and we had to get used to changing plans at the last minute if my husband was too ill to go out. We felt completely alone, there’s no handbook telling you what to do when illness strikes like this.
It becomes even more difficult when you have children. My children were so young when their Daddy became ill; in fact my youngest child was only two years old and she has no memory of him ever being well. My eldest child says it’s as if he has had two Daddy’s – the one before IH, and the one after IH. Initially my children coped quite well with the situation. They were so young that we all just adapted; after all what choice did we have? It wasn’t my husband’s fault that he had become ill. It was no – one’s fault.
It was only when my youngest child started full time school that it really began to hit her. She started comparing her life to that of her peers and she realised that her life was different. Until that point our life had been the norm for her and I suppose in her own little way she must have assumed that everyone’s Daddy was poorly.
It started with her behaviour changing – she became angry, and would have tantrums over the slightest thing. She was too young to verbalise how she felt and so we had no clue what was going on in her mind. As time went on and she was able to explain how she felt, the anger lessened but she became a very sad little girl. Her peers were too young to comprehend what her life as a young carer was like, she did her best to explain to them but she was only six years old!
“No-one understands!” she’d cry.
“Why me?”
“Why did it have to be MY Dad?”
She felt so alone, despite having close family around her, she needed friends who could empathise with her situation. We started looking at what support networks were available for young carers in our area, and discovered that Crossroads Care ran a fantastic young carers project. The children were eligible but there was a problem – children had to be eight years old to attend. My eldest could start straight away, but my daughter was only six! So she had over a year to wait. We looked for books to help her feel more positive about her situation, but we couldn’t find anything suitable at the time.
In desperation she turned to me and said “Well if there isn’t a book out there, why don’t you write one for me Mummy?” What could I say to that? I would have done absolutely anything to ease her pain, so I agreed. The idea behind ‘Caitlin’s Wish’ was born. I wrote the book with young carers in mind. Helping them to focus on the positive aspects of their lives rather than dwell on the negative aspects. It’s written in the form of a magical fairytale but it has an underlying message of positive thinking within it. The book helped both my children to understand that illness and disability can affect anyone at anytime in their lives. It’s no-one’s fault, that’s just the way life goes sometimes.
In fact it helped them so much that we decided to publish it in 2010 in the hope that it might help other children in similar circumstances. I wanted there to be a positive thinking book for children who are young carers that other parents could access if they were in the same predicament as we had been. The thought of anyone going through what we did when the children were young breaks my heart, so if our ‘little book’ can help in some small way then that fulfils the reason why we published it. We just hope that the book will help young carers to feel less isolated and to realise that lots of children throughout the world have got a parent or sibling who has a long term illness and disability and that they are not alone. Caitlin’s wish has been beautifully illustrated by Claire Wiles whose illustrations are in a very traditional style and really bring the story to life. (For more details on Caitlin’s Wish please go to http:www.caitlinswish.co.uk)
Life these days is much better. We have found ways of coping with the various symptoms of my husband’s condition, and when we do go out we are always prepared. We always have ear plugs in case noise becomes a problem, sunglasses in case light becomes a problem, and we always carry my husband’s medication with us. Last but not least as this is the most important factor we have learned to live our life day by day, hour by hour, minute by minute. I’m not saying that this is easy because it isn’t. Sometimes it can be so frustrating and disappointing when you have to change plans at the last minute, but we have learned to accept it. We can’t change the fact that my husband has this condition, so you have to accept it.
We have now got an amazing network of support surrounding us. As well as our family and close friends, we have Crossroads Care who are a life line to us – they support the whole family and the young carers project give the children the opportunity to befriend other children in similar circumstances to them and they can just go and be children one night a week ... enjoying doing all the things that non young carers take for granted.
We have also discovered an amazing online support network – primarily on the social networking site ‘Facebook’. There are many carers support groups and also IH support groups on there.
About the author
For more details on Caitlin’s Wish, written by Victoria Taylor, please go to http:www.caitlinswish.co.uk For more information about Intracranial Hypertension please go to the IH Research foundation’s website – http://www.ihrfoundation.org and for more information about crossroads care please go to http://www.crossroads.org.uk
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