As regular readers of Living with Linda will know, Linda came to live with us (Meg and Beth) when her Dad (and Meg’s) died very suddenly. Losing her father so suddenly, being uprooted from her home, her other siblings, nieces and nephews, and a growing number of great-nieces and great-nephews would have been traumatic enough for any 40-something person. But Linda is an adult with Williams Syndrome and she had very little choice in any of the decisions that had to be made for her at the time. It was just as traumatic for Meg and me, but we at least had made the choice to have Linda come and live with us, some time before – though we didn’t have a great deal of notice or time to adjust.
On top of it all we had signed contracts to move house, and for the first 6 months of Linda being with us we were spending time in the new house, decorating, refurbishing, mostly in the evenings and at weekends. Linda had to come with us, because our official support took a time to be set up. Again she had no choice, and was obviously unsettled.
Over that first six months Linda showed great signs of anxiety. She would get very angry at what felt like the slightest thing, slamming doors, calling us names punching her fist on tables. That was hard enough, but what was more disturbing were her “voices”.
We had been aware for a time well before Linda’s Dad’s death that she would shout at “someone” telling them to “go away”, “leave me alone”, “it IS mine”. These outbursts were frequently accompanied by a punch at that “someone”.When we asked who she was shouting at she told us “Vicky”. Who was Vicky? well Linda told us she had been at school with her and she had stabbed Linda. We weren’t able to corroborate the stabbing because Meg had been away at university at the time. But the memory was certainly very real for Linda.
After her Dad’s death the voices made themselves known far more frequently and Linda’s response got ever more violent and disturbing. And she became more disturbed by them. “They” woke her in the middle of the night, saying nasty things about and to her. It’s hard now to remember just how frequent they were, but we were hugely concerned for her mental health. Linda would frequently shout at us too. I (Beth) took the brunt of this. Partly because I wasn’t her Dad and tried to tell her what to do, and partly because Meg had to work away from home a great deal because of business commitments that had been booked well before – and we still had a mortgage to pay.
We mentioned our concerns to our GP (family doctor). But it was hard to describe to someone who wasn’t there when the voices came, just how disturbing they were, and the GP was so good with Linda that THEY didn’t show themselves while we were in her surgery.
We had got in touch with our local social services department and to their credit, we were allocated a social worker as an emergency. She helped us navigate the intricacies of the UK benefit system, was able to get us several hours a day cover with a care worker, so we could have a stab at carrying on our work (both of us are self-employed). After a couple of visits, the topic of the voices came up and she initiated a referral to a psychologist specialising in people with a Learning Disability, helped by a supporting referral from Linda’s Social Worker.
Linda was prescribed Sertraline hydrochloride, a selective serotonin reuptake inhibitor (SSRI). It took a while but gradually the intensity of the outbursts diminished. We have gotbto know some of the triggers and now with the medication and our managing strategies, Linda’s life is a little more even.
So what can we share?
Well, we now know that the voices and the punches come most frequently when she’s tired, so the first thing is to manage that tiredness. She fatigues quite easily so when she is with us and we are out and about, we have sit-downs at regular intervals. The support workers who support her regularly know this too, and build in breaks to any activity. With one lot of services we know she gets that support – with another support channel she most often doesn’t but that’s the subject of a whole other posting!!!
Secondly, if she has had a busy day – physical or brain busy, then it is well worth her having a snooze before our evening meal. Linda isn’t always ready to greet this with enthusiasm, but we have found a technique that greatly helps. We bought her a fleece blanket (pink obviously ) that and we’ve found that if we tuck this around here, in her chair she can usually be persuaded to gradually doze off.
We came across a great little song that we’ve called her “chill out” song that helps the unwinding too. Thanks to Ze Frank (http://www.zefrank.com/chillout/ and http://www.ted.com/talks/ze_frank_s_web_playroom.html) for this song. The TED video is amazing for lots of things but the chill-out song works beautifully for Linda. Not only is it a gentle almost lullaby song which would be quieting for anyone, the fact that it can tap into Linda’s love of music helps a huge amount.
Helping her relax helps the anxiety when Linda is tired, and saying something that “those voices are picking on you because they know you are tired, can help with the focus on having a snooze when the answer is “I don’t need to sleep, I’m not tired!”
The other obvious times that the voices make their presence felt is when Linda knows that she’s done something wrong or we’ve told her off about something. Talking to her quietly helps here not to aggravate the anxiety, and sometimes just leaving her have a little rant does help to get things off her chest. Distracting her with a different topic of conversation can help too. One thing that DOES NOT help is just plain telling her not to do it. Logic is of no help here.
What have been your experiences? Please leave a comment if have anything to share.