Saturday, 13 October 2012

Living at Home again: An Impossible Dream?

West Meon Church

A magical morning with Chrissy. We walked to the village shop for a newspaper and Maltesers. Chrissy behaved perfectly so we stopped for a photo-call in the churchyard. Later as we looked through the pictures on her laptop, Chrissy's face was wreathed in smiles as I showed her how to move the cursors around. She giggled as she made herself disappear then re-appear on the screen – now you see me, now you don’t!

Having it all - enjoying lunch, Cbeebies and today's photos!

My last post was about taking a stand. I can reveal now that it was over Chrissy's Quetiapine - I was so desperate for her to come off it that I stopped it for three days on holiday. Then I admitted what I'd done to the ATU and begged them not to re-introduce it as we had seen improvements in Chrissy's behaviour and mood. It was a rash decision on my part and I've explained my rationale on here before. I had no concerns about the risks as we had seen similar improvements when the ATU had 'forgotten' to give Chrissy half the prescribed dose for a fortnight. For reasons I completely understand her doctors reinstated the drug but immediately began to 'review it downwards.’ (They need to monitor effects.) Chrissy is now on only 50mg once a day. So far so good, although her ward nurse told me that Chrissy had been slightly more agitated at meal-times lately, bending her fingers back and asking repetitive questions about food. However, her nurses have been able to distract her.

As the weekend's gone on, Chrissy's had her moments but she's been relatively easy to pacify and fully engaged in everything we've been doing. As a general reflection of her improved mood over recent weeks, her hair is growing back and looking more lustrous (she isn't pulling it out), and her body is no longer marked by self-injury.

Now Chrissy's behaviour has settled down, I’m feeling more torn than ever about her future. We’re no closer to finding a way to set up the bricks and mortar part of the single service unit option (where Chrissy lives on her own with 24-hour support). You've seen from previous posts how some issues that crop up in residential care haunt me. Now I’m wondering again if there's any way we could make it work for Chrissy to live with us permanently.

Ian doesn't believe that living with us would be the best thing for Chrissy. He fears we could go back to square one if her condition were to deteriorate again. As there's every chance, given her history, that this could happen, anything that's put in place would need to be watertight to minimise the risks of further traumatic moves. It may sound selfish but we're in our fifties and enjoying more freedom now that our children have grown up. It would serve no one if we were to go backwards to a time when Chrissy's outbursts ruled our lives and I felt like a prisoner in my own home with her too unsettled to take out or leave with a care-worker. We would be setting ourselves up to fail if we were propelled back into the fray of pointless crisis meetings and battles to get effective medical treatment and support. So there would need to be strong contingency plans in place, for example, an immediate return to the ATU for further assessment and, if necessary, treatment - and how enforceable would those plans be? I’ve lost all faith in Chrissy's commissioners, with their endless broken promises and buck-passing.

Another question is whether we could devote the time, energy and patience to manage Chrissy's needs as they should be managed and, the biggie that terrifies all parents of disabled children - what will happen when we're gone? As one of the provisions for her future care, shouldn't we ensure that she is settled somewhere that doesn't depend on us being around?

Anyway, it’s all hypothetical right now and I may have blogged myself out of it! Ian’s far more pragmatic than me – I follow my heart but as my book title says sometimes ‘love isn’t enough.’ It’s early days and I'm jumping the gun – a date for discharge from the ATU has yet to be agreed. Chrissy's epilepsy is still not as controlled as her doctors would like it to be and if another anti-epileptic drug is trialled she will need to stay in the ATU for further monitoring as she's had such nasty reactions to the last two.

At the next care planning meeting on 22 October I propose that we ask commissioners to suggest a support package template if having Chrissy back home is a route that Ian and I could agree to explore.....

Since I published this post I was given more food for thought when another mum of a child with learning disabilities wrote a piece for the Daily Mail that included her take on the residential care dilemma. She questions whether it would be cruel to leave her daughter unprepared and unprotected when her parents die:

I am a SWAN UK (Syndromes without a Name) blogger


  1. Oh my goodness what an emotive topic and some hard decisions for you to make. Althought my daughter is only 14 we are already thinking about her future and some form of supported living. Chrissy is very lucky to have such wonderful parents who are carefully weighing up every option and will make the right decision for her. Remember its also important that you are happy too to enable you to continue as the fab parents you obviously are. Lots of luck and love. xxxxxx

    1. Thanks for raising a hugely important point JB Johnston. If we neglect our own needs we can't do our best for our children, & some of them do need all the extra strength & resourcefulness we can muster! Chrissy was 14 when we first started looking at those options too.

  2. i really feel for you having to make such difficult decisions but i am sure that whatever you decide it will be the right one as you are such caring parents. i do feel that it is important to have time for yourselves too. where can i get hold of your book?

    1. Thanks Nanny Anne, everyone has said they're with Ian on this & I think I am too! Just harder to leave Chrissy while she's come back to us in a sense. Also think I'll feel happier when she's in her own place with hand-picked staff etc. There's a photo of my book as you scroll down which you can click on. Here's the link: