Sunday, 11 March 2012

Defining Normal

Chrissy tickling her feet at the top of the garden

Normal for us is leaving Chrissy on a locked ward & trusting paid strangers to be kind to her. It's letting go & accepting that a professional team does a better job than we can at home. It's acknowledging that once a week our lives will be both enriched & turned upside down by her visits. It's avoiding her self-inflicted wounds when I towel her dry after a bath. It's shaving her legs & wiping her bottom without a 2nd thought. It's reaping her gentle smiles, basking in her sunshine times & marveling over her different way of viewing the world.

Although Chrissy isn't at home full-time with us anymore, she is still a huge part of our lives. Most days it's normal for me to be writing to or speaking to one of Chrissy's doctors or other professional involved with her care. On my desk now is a letter about our Disability Living Allowance appeal. Behind me, ready for filing are documents relating to my application for Deputyship so I can legally act on Chrissy's behalf, ie sign a tenancy agreement if she moves to a rented supported living home. On the floor is a musical book for toddlers, entitled 'Bedtime Songs.' I guess an outsider looking in would be surprised to learn that it's a gift, waiting to be wrapped in pink Sleeping Beauty paper, for someone's 28th birthday.

All this has been our normal for so long, I've found #definenormal a huge challenge!

I have written this post as part of the #definenormal blogging challenge at
Define Normal Badge

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Saturday, 3 March 2012

Good Care Planning & Changing Needs


We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!

I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.

Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.

We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.

I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.

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