New Chapter: Moving on Out (Part 1)

Wow, what a year it has been! On 20 May, I published a blog post announcing that I had been given the tenancy of a two bedroomed flat, but I have only been living in it for about two months. I can tell you now, it has not been an easy process at all!

A few years ago, when I decided that I was ready to move out, Social Services did a full assessment to find out what my needs were and what care I would need when I eventually moved out. This year, when we got in contact with Social Services to get care in place for when I moved, they said that I would need to be reassessed because the old care plan was too old... When they did the old assessment, they came to my mum and dad's house and did a full assessment which also determined whether it would be the social part of the Continuing Healthcare (CHC) or the health part that would cover the cost of my care. It was agreed that it would be the social part that would cover it because I don't have many medical needs.

Anyway, this time, they asked a lot of questions about my needs and wants over the phone, and did the assessment that way... I guess that's because of Covid, right? To be honest, I felt that it was very difficult doing it this way because the social worker couldn't see me face-to-face and therefore it was difficult to explain everything. It was also difficult to pin-point every aspect of my care needs in day-to-day life because we don't really think about it, we just do it out of habit and routine.

Then I was assessed by two care companies; the first one said that they “couldn't meet my requirements”. The second (the one that took me on), said they could meet my needs and said they could get someone in within two weeks (yay). However, they did the assessment on 31/08, so it took just under two months from when the company first assessed me.

Ever since I have been mentally ready to move out, I had wanted to be living in my own place by the time I turned 25 years old... When I was offered this flat back in January, we told Social Services straight away, so that they could put a care package into place to enable me to live in my flat with a live-in carer, but it took ages just to get over the first hurdle.

My 25th birthday was getting closer and closer, and the closer it got, the more disappointed I was getting. Mum and I even discussed the potential of her moving in with me to reach my goal of moving out by the time I was 25, but then I decided not to do that because it would take away the urgency to get care in place for me and it would negate the purpose of me moving out.

I also realised that it didn't matter if I was not living in my flat by the time I was 25, at least I'm the tenant... I should be focussing on that, rather than being disappointed that I couldn't move in. I wrote a great big long post on Facebook:

Ailsa's Epiphany for Saturday, 18 September 2021:

For a good few years, I've wanted to be living in my own place by the time I am 25... I've just realised that it doesn't matter if I'm not living in my flat by the time I'm 25, at least I'm the tenant... I should be focussing on that, rather than being disappointed that I haven't got the care in place to enable me to live there yet, because I can't do much about that. The fact that I'm a tenant of a property shows that I've grown up and matured into my own woman, because if you asked me about where I see myself at 25 years old when I was around 16, 17, or even 18, I would have said I didn't know and had a complete meltdown... I was at the point in my life where I was finding it difficult to grasp the concept of adulthood, as well as letting go of who I was back then, and accepting who I am now. To be honest, at that point, I was at a really difficult and dark time in my life, so much so that I pushed everyone away because I was so afraid. I didn't want to talk about the things that really mattered, and I hate to say it, but this was partly because I still had the mentality of a child. I still do to a certain extent, but that's ok because I am getting so much better and I know I will get there. My point is that although I can't move into my flat yet, and I don't have a clue when I will eventually move in, that doesn't matter because I still have the flat and it is my very own tenancy, so I am proud to call it my home!

I am so proud of myself for coming this far!

I moved in on 18 October.

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When I wrote this post, I was settling in well, however, there have been some major changes. I have had to move back into my parent's house temporarily because my carer walked out, and it's easier for them to care for me there...

My carer was brilliant to start with, but then her mood got increasingly worse with each day. I tried to help her by asking her what was wrong, but she kept saying that she was fine, which I could tell was not the case.

Her mood changed dramatically. She went from being happy and friendly to quiet, withdrawn and stroppy. I have no idea why or what changed, it was almost instant. Each day, there were more things coming up, most were silly little things, like her complaining about the way I talk being “rude”. I have never been able to control my tone of voice properly, meaning that my voice goes from high to low without warning, and I can suddenly raise my voice or shout without meaning to. I can even sound angry even if I'm not. When I get frustrated or worked-up about something, my voice does its own thing, and I can't always control how the words sound when I'm speaking because of my poor muscle control due to my CP. We tried explaining this to the carer, but I don't think she accepted it.

I have never had a great memory, and it gets worse when I'm stressed. The carer had been told that my memory is poor, so there was no reason why she should have got annoyed about me asking her to repeat things, but she did. There was one day where she said something to me and I forgot what she said, so I asked her to repeat it. She sighed and repeated it, but I didn't hear what she said because she tended to mumble or talk really fast, and this particular time, she said “this is the last time because I have said it enough times...” - I was worried I wouldn't get what she said again because she said that.

She complained about me saying “enough” when I had finished eating or drinking. She thought that sounded rude, so I explained that it wasn't rude and that it was what I had always done. Thinking that this was just a one-off, I ignored it. This did settle down for a few days, but then started up again, so I basically said that I wasn't prepared to change the way I talk just for her because it's not rude, and I have enough problems with my memory without trying to remember not to say something that I have always said. What else could I say? I said it politely...

Then there was the fact that she didn't like me calling her in the mornings because she would "come when it was time", so I stopped calling her until I talked to my mum about it, and mum told me that it didn't matter and I should keep doing it (I only did it once each morning).

So the next morning, I called for her when I was ready to get up (I had woken up 10 or 15 minutes earlier and therefore finished my physio earlier)... That didn't go down well at all because she ranted at me for about five minutes, saying the same thing and made me wait until the “proper time”... I could tell that I wouldn't be able to get a word in, so I just laid in my bed waiting for her to finish. That morning, I decided to skip half of my morning routine because my body was all over the place due to the stress she had caused me and I knew that I wouldn't be able to do it safely as a result of this situation.

After breakfast, I asked my mum to come down to help because things were getting out of hand. The carer didn't come out of the room at all, not even when my mum arrived. I explained to my mum what had happened, and my mum told me that she had asked to leave. This upset me because I had no idea what she was feeling.

The live-in manager came down to try and sort things out, I had a chat with the manager and told her what was going on, and she went to talk to my carer, but she was already sitting on the bed with her suitcase packed and her hat and coat on ready to go... I was willing to try and sort things out, but after that, we decided that there was no point in trying to fix things if she was going to be like that because she obviously didn't want to be there...

I just wish she had talked to me more, so maybe we would have been able to prevent all of this. The thing that makes it worse is the fact that I honestly have no idea why she started acting like this. At first, I thought that she might have been having a bad day, but obviously not because it carried on.

The thing is that there is a national shortage of carers, so I could be waiting a while... I will find the right carer eventually (I've had two so far). I'm just really grateful that I have such a loving family (and friends who are part of my family too) to help me through. I honestly could not do it without them! You know who you are...

I was going back for Christmas anyway, it was just a little earlier than expected. I have missed being with everyone. Here's a photo of my Christmas tree...

On a side note, I went to see Sarah Millican and Russell Howard this year, and they were both brilliant! I saw Sarah Millican in July at the Mayflower Theatre in Southampton, and Russell Howard in October at the TV Centre in London!

Russell Howard was recording a live TV show, which means it didn't go out on air there and then, but there was a live audience. As it wasn't live on TV, they kept stopping to re-take shots. There was a couple of points where Russell Howard stopped and re-recorded sections because he had thought of a better joke or a better ending to the same joke. It was so interesting to see how it was done!

Join me next time for Part 2...