Saturday, 21 April 2012

Stress on the Carer

Chrissy's sister, Alex, doing the 'Chrissy clap' on Chrissy's 28th birthday last week

Most of it is in my book so why not own up on here? I had what can only be termed a 'nervous breakdown' when I was 29.

I became depressed because I could see no light at the end of the tunnel. After Chrissy, we'd gone on to have two more children, not realising how severe Chrissy's problems would turn out to be. I thought she'd be a slow learner but would grow out of the most challenging behaviours as she matured. Instead they got more difficult to manage as she grew bigger. I'd attributed her learning disability to a long difficult labour, and had never considered the possibliity that subsequent children could be affected similarly. In fact, although the cause of Chrissy's difficulties is genetic, it wasn't inherited from her dad or I. As in about 50% of children born with 1q21.1 microdeletion, it happened spontaneously. A one-off.

My marriage broke up when Alex was a baby. I instigated it for reasons I can't elaborate on because my ex-husband has since died and it wouldn't be fair on his children or family. I touch on some of it in my book, but, as in most marriage break-ups, there's a huge, complicated untold story behind it.

It left us in negative equity, and I lost my home and my car, as well as my sanity for a while. We were officially homeless and I was terrified that we'd end up in a hostel, and Chrissy would keep everyone awake with her outbursts. Mum was otherwise engaged as a carer with my dad, who had premature dementia, but she did what she could. There was no other family living nearby and I didn't know where to turn. I knew nothing about respite or social workers back then. I used to cook Sunday roasts for friends in return for help with the children because on my own I struggled to cope. All three were poor sleepers and when Chrissy kicked off the younger two inevitably got some of the fall-out. I felt that I had no choice but to split my children up in order to survive as a family. My ex-husband took one of them to live with him - and that's another story best left untold....

I lost my appetite, and lived on cigarettes and coffee. My weight plummeted. As an escape mechanism I tried to sleep whenever I could. My tears often started unbidden when I was out in public - I thought they'd never stop sometimes. I fantasised about driving into walls. I felt ashamed - I had to pull myself together for the children's sakes - but I didn't know how. Eventually, I saw a sympathetic GP and told her I couldn't understand why I kept crying. She reached out sympathetically to touch my knee and I broke down in front of her. She diagnosed reactive depression and said she would be surprised if, after all I'd been through, I hadn't reacted by becoming depressed. I was put on tablets. I don't know whether to attribute my depression lifting two months later to the anti-depressants or the end of my uncertainties about where we'd live. The compact three-bedroomed council house that was to be our home for the next decade was in a derelict state - the last tenant had been an old lady, who'd died there - but I can vividly recall my relief at having somewhere that was mine, that no one could take away. A friend who came along with me to view it before I moved in told me later that she'd cried for us afterwards because it was so awful, especially compared to the lovely spacious detached home we'd had to give up.

My breakdown brought us under the radar of the local children's learning disability social services team, and we were allocated respite and transport to take Chrissy to school. It also made me stronger - I learned to be more proactive to prevent anything like this happening again. Over the years I worked with child psychologists and Chrissy's school to develop a behavioural management plan to deal with her behaviour. I felt altogether less helpless in the face of adversity. By then, I'd met Ian, my second husband, who proved to be our rock.

While I've never sunk to such depths of black despair again, life with a child like Chrissy has been a roller-coaster ride. Not knowing what was wrong took its toll as I searched for answers that kept ending in blind alleys - and the cause of Chrissy's horrendous cyclic self-injurious outbursts remains a mystery. I've had to hold her down while doctors injected her with sedatives and call ambulances because she's in torment from something that's made her scream and thrash around for hours. Life with Chrissy has been peppered with terrifying medical emergencies and debilitating fights for services. My sadness and guilt at having to leave her in the hands of adult residential services because I can't cope never goes away.

It's hard to say what effect all this has had on me over the years. Health problems I've got may well have occurred anyway. How do you separate such things? I've had back problems ever since I've had Chrissy, which hefting her around hasn't helped - but I have skeletal anomalies in my spine. I have Sjogren's, an autoimmune disorder. It gives me occasional flare-ups that floor me for a couple of days at a time but I've got it mildly compared to some. Could stress have caused my body to attack itself or am I just like thousands of others who get these nasties during middle-age? I've got an embarrassingly bad memory, explode over things that shouldn't matter and get over-anxious about things that may never happen but don't lots of middle-aged women? I get moments of self-pity when I think 'why us?' but then why not us? Life brings challenges for everyone.

I cope by sharing experiences with other parents in the same boat, while having a separate life and interests where I'm not defined only as Chrissy's mum. Things like playing the piano (I'm having lessons) and listening to my ipod in the car help me switch off and release tension. Black humour helps too - you have to laugh when your adult toddler runs riot in a pub because the coke bottle lid is different to her usual one, or shrieks 'f~*@ it!' in public places. We've had so many occasions like that it takes an awful lot to embarrass me these days! And I'm always up for a good party. Nothing like letting your hair down to forget all your troubles and recharge your batteries.


I am a SWAN UK (Syndromes without a Name) blogger
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14 comments:

  1. Don't be so hard on yourself. You have had to cope with so many things and although I only know you through your writing I would say that you are an incredible Mother who is a lot stronger than you give yourself credit for. I hope you will keep sharing your experiences.

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    1. Thank you Nanny Anne! What's the saying - 'you're only as happy as your unhappiest child.' One of my favourites. So true.

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  2. Thank you for being honest, it means so much to so many people to find out that they way they feel is ok. People naturally shy away from admitting how they really feel out of shame or guilt, I think your post goes to show that your reaction was a natural one for someone who was drowning and needed a lifeline to be thrown.

    And look at the person you are today...

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    1. What a great way to put it Renata - at our lowest we're the last to realise that we need a lifeline. Someone else, often outside the situation, needs to step in on our behalf &, thank God, that's what happened for me. I wouldn't be the person I am today if I hadn't been through all that of course x

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  3. I'd say a lot of people will be helped by this - it's so powerful - and shows how we should never give up hope that things will get better xx

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    1. Thanks Looking for Blue Sky. I'm so pleased you saw the message of hope coming through this post - as it's exactly what I want to convey, & tried to convey in my book too. xx

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  4. You have been though a lot and you have handled it well. Give yourself credit. It is not easy. My sister has Angleman's Syndrome and our family has had a very hard time taking care of my sister as well. She is going to be 31 in June and only recently has my Dad allowed himself to let her live in a group home. You have done a wonderful job as a Mother considering your circumstances. Let yourself believe that and I look forward to hearing more from you.

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    1. Thank you Samantha, always great to hear from a sibling. I know that Angleman's can be quite challenging too! I wrote a health feature on a 4 year old with Angelman's (known as Happy Puppet Syndrome!) for that's life in 2007. His seizures were severe & he also had two unaffected siblings. Must have been tough growing up in that situation as well as hard for your parents x

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  5. Great post! All the best, Jane. Gill

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  6. Really honest and inspiring post. I do try to be honest and open about my own feelings, I am sure surpressing them only leads to more problems. It is inspiring to read all you have been through and the effects it had on you and then compare that with the person we know now. It gives me hope that I can cope and i will cope with the challenges thrown my way. Thank you for your honesty.

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    1. Thank you! I'm so pleased it helped you to feel less daunted about the future. They say what doesn't kill you makes you stronger... x

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  7. yup a rollercoaster - - i've mentioned you in my blog - your book helped me along the way.... :)
    http://asieslavidacestlavie.blogspot.co.uk/

    natasha x

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    1. Thanks Natasha, just checked your blog out. Chuffed with what you wrote about my book & relate to all the insights you give about having an undiagnosed child :-)

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