Week 40 - Rethinking my support timetable.

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Since leaving supported living i have always been very dependent on someone for day to day support. First my boyfriend and more recently my other friends. This doesn’t work very well, it’s very brittle and the loss of autonomy is difficult for everyone. The stress and pressure quickly makes the friendship very complicated and brittle.

This got even harder in 2014-2015 when i got unwell and the operation to cure my illness caused life things to get harder. I lost my speech, got muddled more quickly etc etc.

I moved across the city into a flat close to my friends house. So they could support me as i recovered. They recovery has been so much slower than anyone expected. Its been over 10 months and i am still without speech.

I’ve never been able to settle enough to sleep alone at my flat without functional issues the next day. My remarkable friends have been taking turns to spend the night at my flat with me.

We know it might take a while for me to recover, so we found a care agency who could send someone to spend the night with me instead. To reduce the dependency on my friends.

A few weeks ago, we started the transition to spending nights with the agency care lady. We had to start the transition a bit sooner than planned.

That transition has gone pretty epically wrong. I’ve pushed myself to breaking point over the last few weeks, taking time off work etc to try and make it work, but it’s just been too much.

I was really upset. I didn’t update my blog much. I didn’t want to admit defeat or document how badly it was going. But then i remembered that writing about the things which go wrong, is as useful as writing about what went well. Perhaps more useful.

Ive had a few days to rest and reflect at my friends house and we have made a new plan building on what we have learnt.

What’s Wrong?

In simplistic terms there are only two problems:

  1. I don’t feel safe enough in the flat with the new carer. (can’t sleep, huge anxiety)
  2. I don’t have enough time between overnight visits to make up for the lost sleep and recover from the anxiety attacks etc.

Solving them is much more complex.

Feeling Safer with Terri.

The lady who has been looking after me overnight is called Terri. She is lovely but she doesn’t make me feel as safe as my friends do. Not a huge surprise, i’ve only known Terri a few months, my friends 10+ years!

There are two parts too feeling safer alone in the flat with Terri. The first part is the flat, we are looking at better flats which are closer to my friends house. A better baseline means less anxiety to start with.

Secondly we have started simplifying each night Terri stays. Rather than having a routine to follow and things to do, i am instead "going to bed" before she arrives so there is nothing for her to do other than be there. It mean a 9pm "bedtime" for now, but we can work on extending that in the future.

We are also working on making concrete and practiced plans for what to do in an emergency etc. Building confidence with concrete actions.

Recovery Time.

Terri was visiting throughout the week. This meant i had only a few nights sleep between visits. One bad nights sleep would make further visits impossible.

That didn’t work, so we have split my week into 3.

  • Working (3 days)
  • Flat Stay With Terri (2 days)
  • Recovery (2 days)

I am going to visit my flat ever afternoon and evening, but only sleep there the two Terri nights. Get stable with Terri for two nights a week and then work on adding more in the future.

This is MUCH simpler.

Final Words.

Rather than viewing it as a defeat, i am trying to be more positive. We knew it would be hard and we tried our best. Now we are trying something a bit different.

Additionally, the last week or so has been much harder because of a social worker doing well intended, but ultimately harmful things. It’s not her fault as such, but she has made everything much much harder.

On Sunday we will start again with a different approach. I will get there, eventually!


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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