So… (I always seem to start my chatty posts with so?!)
Sorry I’ve been a little inconsistent with posting, ironically having a chronic illness is unpredictable and my energy levels are all over the place. I’ve been really busy recently (for me) and over the last few months, I’ve been awarded Direct Payments through adult social care, which enable me to hire carers to help me with day to day life. (It’s not as scary as it sounds, I promise).
The process in Brighton for adult social care was pretty simple and they were incredibly supportive. I am planning to do another post on the process of this soon. For now, what you need to know: carers through adult social care are called PA’s- Personal Assistants- (this makes me feel super fancy lalala!) There are a few ways you can employ your PA’s but as mentioned above I will discuss this further in another post.
Making the mental shift of needing care support wasn’t easy but the fact that my PA has become one of my friends has really helped with this. Although her role is not your typical care role, she does help me with aspects of personal care, showering, organisation, days out etc… We joke that her skill set for her CV is becoming very extensive since working with me, she’s done everything from building my power chair and being my personal chauffeur to accompanying me on days out. She is my personal shopper, hairdresser, cleaner and type writer all in one.
For me, going out with my friends has been anxiety provoking since being in a chair I worry they feel they can’t do what they would want to do as I may hold them back. Having a PA means she can come out with me and my friends and we all have alot more fun as the responsibility isnt on their shoulders and the guilt isnt on mine. My friends from home came to visit and we went for drinks with my PA like we would any friend, she drove us around etc. If my carer was alot older than me I think we’d feel a bit like we had our mums with us on a day out, having someone my age makes it easier to blend into society. I genuinely feel like I’m out with my friend who happens to being paid to look after me.
My PA hours are pretty flexible and she can come round to get me ready for a hospital appointment or she could make us both dinner and help me tidy my room. Being chronically ill, I’ve realised it’s the little things in my life that I struggle with. Doing my bra up, doing my washing, cooking dinner, showering, driving, it’s all the steps before an activity that waste my spoons meaning I don’t get out or don’t enjoy an activity. Having support for all the ‘life stuff’ really helps me focus on being able to live a little more like a normal 20 year old. She doesn’t come over to help everyday but funnily enough if she isn’t over to do care stuff shes over having fun with us. In fact if I don’t see my carer (she likes to be called my friend) for a day it feels a little strange!
My housemates love my PA they get on really well with her and I love that. I was worried about my housemates feeling uncomfortable with a carer in the house but my PA really doesn’t feel like a carer she feels like one of us. She’s been amazing at looking after me when I’m unwell and answering the phone at 5am and bringing me tablets at midnight when I’m having a nightmare. She even helped scare my housemates with a halloween mask which was brilliant. I think having my carers actually helps my housemates feel more at ease knowing they’re living with a poorly person but the responsibility isn’t on their shoulders. They know they will sit with me if I’m poorly and call 999 in an emergency but also know they can call my PA who can be there in 5 minutes. It makes me feel less guilty and takes the stress of their shoulders. As students they didn’t sign up to be my carers!
I’m thinking about making a little video about the employing a PA process and life with a PA as it was something I really struggled to find advice on when I was looking. Let me know you’re thoughts here!
I am currently interviewing for another PA which is an extensive process and leaves me pretty drained. My housemates do an amazing job of waking me up, cooking for me and carrying my stuff etc when my PA isn’t free but
Final update- I’ve started using the F word in my tics. Not good. My PA takes the insults like a champ. Hoping these don’t last!