Last week my PA was on leave and my Dad and stepmum were away for a few days and I had to resort to using a care agency again to pop in, check I'm okay and to help me out with tasks including getting washed and dressed, taking my medication and preparing meals and drinks.
I was quite anxious to say the least about having a care agency as the last care agency I had when I first got my care package was awful. Half the time I wondered why many of the carers where woking in the job and I never received the amount of time I was allocated and I was often rushed, essential tasks missed like not being given my medication or having a drink. Carers were always consistency late too, especially at bedtime as bedtime is when I'm at my worst. I also need go to bed fairly early so I can get as much sleep as possible to allow my body to function during the day. All-in-all it was making me ill and I was miserable and though I needed the care I couldn't take putting up with this "care" any longer. I was then approved to have my care provided through direct payments which allowed my previously privately employed PA to come back and continue to work as my PA. Currently I'm trying to get additional PA's to my care team as I need care 7 days a week and also to have different PA's to cover for each other for when one is ill or on holiday.
Anyway last week for a few days I had a different care agency. I couldn't have faulted the care I received. I felt that my care needs and wishes where fully met and I was treated with respect and individuality as a young adult who just so happened to need a little help to be able to live their life. I was allowed to choose how I spent my care such as having a bath over a shower, how I like to have my hair washed and my other routines that I like when getting washed and dressed or little things like how much cumber I had in my sandwich. Little things like this when you need a hand with things matters and it makes me feel empowered especially because I need help with things that most people my age can do on their own. For example with my bath I can't bathe on my own but being able to chose what products I use and the order of at one point I'm wanting my hair washing, or when I wash my face or when my body is washed gives me as much control with support and enablement.
My illnesses don't yet have a cure and at 28 it can be difficult to need help to manage different aspects of my life. However good care helps me feel just that little bit more in control of a life I have little control over. Good care make me feel better an it improves my quality of life just that little bit better too both physically, socially and emotionally.
Receiving good care has made me realise what an amazing job care work can be. For someone needing care though it can be hard unfortunately to find good care at times. Thankfully most of my experience of receiving care has been good but like I mentioned I've had my fair share of bad experiences. Not just with community care but when I've been in hospital too and I've heard from home care workers their own experiences of seeing poor care from other carers. Often I've found it depends upon the care agency. The agency I had where I had an awful experiences there where some good carers but on the whole most of the "carers" to me seemed to be working in the wrong industry.
I've always felt and said that carers need greater recognition for what they do as well as to be paid more than just the national minimum wage to reflect the big difference they make to many disabled and chronically ill people's lives. I don't get how someone working in a supermarket can earn more than a carer or a personal assistant. Personally the latter is a much more worthwhile job.
I want to raise more awareness of the role carers play. To help with this I plan to vlog some of what my PA supports me with to give people an insight into the role and the variety in what the job entails. Such as today (Monday 21st) my PA has made my breakfast, supported me to wash and dress, taken me to a nurse appointment for some pre surgery tests. We then went for a drive-thru coffee and came back to get some lunch. How's that for variety! I wish I'd filmed today but hopefully when I have another day like today I can film it but at the moment I've not been well enough to be able to do the editing for YouTube videos so I've been using some videos I made a while back and I'm feeling wiped out from leaving the house.