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What It Is Like to Rely on Carers

Headshot of Ailsa

Hi everyone, I am Ailsa. I would like to thank Madeline for inviting me to write for Disabled People’s Voice… My parents were told that I was diagnosed with Cerebral Palsy (also referred to as CP) when I was five months old, but doctors knew before then. I am the proud owner of Brains on Wheels. Brains on Wheels is my personal blog, where I write about my experiences surrounding disability.

When you rely on carers to help you do most daily living tasks, you’ve got to get the balance between a personal relationship and a working relationship right; if you can’t seem to have this balance, you’ll probably find yourself in a lot of sticky situations.

In my eyes, there are three different types of relationships you can have with people who provide care for you: a friend may help care for you, you can have a proper carer that you employ and pay, or a family member who cares for you. Each of these may do the same, but people tend to have a very different approach to how professional or friendly you can be with each other, depending on the type of connection you have.

I am now going to walk through the difference between each type of relationship that you can have with each of these groups. Let’s start with a professional carer, who is trained to do this job. No matter how much you need help with, whether they are there to assist with housework, personal care, or just having a chat, these carers are paid to help you and they should be happy to do almost anything you ask them to. Unfortunately, this doesn’t always work out.

Since I turned 18, I have been having carers come to take me out and just have a good time. I am not able to go out by myself due to my disability. My carers enabled me to go out and have some independence and fun without my parents. For a while, this was great. We went bowling, swimming, shopping – you name it. I started to become really bored with my respite and I wasn’t sure if I wanted it, but I strung it out because I knew that if I threw in the towel and said I didn’t want it any more, that would be it, and it would be an absolute nightmare to get back.

When I started to become less interested in going out, I knew something was wrong. It was like an itch that I couldn’t scratch. For ages, I thought that I wasn’t enjoying it because I had changed, but in fact, it was the complete opposite. I realised that to continue having the right carer for you, you and your carer have to get on well and have mutual trust in one another. For me, we stopped getting on well, and I hate to say this, but I didn’t really trust this carer any more. Trust is vital when you have to rely on someone. It’s an extremely odd feeling when you’ve known someone for so long, but over time, you feel more and more awkward around them… Half of you is saying ‘I’ve got to do something about this’, and the other half is scared in case you make things worse, so you wait to see if things improve. I was feeling like this for months. I finally plucked up the courage to say enough was enough, and asked the company not to send her again.

Since then, I have been enjoying my respite a lot more and I now look forward to it every week. Unfortunately, I am in the vulnerable category, and since this Covid 19 virus came to light, I have been careful. Ever since the UK government brought out the notice saying that everyone with pre-existing conditions are strongly advised to self-isolate, I haven’t been out. My carers have been coming in to keep me company and to help stop me from going completely insane!

Moving onto friends and family. I live with my mum and dad, and rely on them to help me carry out most daily living activities; such as, getting up, doing personal care and eating and drinking. There are lots of complications about having your parents care for you. One of these is ‘getting on each other’s nerves’. This happens quite a lot in our house because our opinions and views differ a huge amount sometimes, and I don’t want to just sit there and be silent, but then again, I don’t want to argue with my family. It makes things worse when they don’t want to or can’t understand the point that I’m trying to make. I don’t say half the things I want to because of this.

My friends are my lifeline, and I would do anything I can to support them. My friends are there for me when I need them the most. When you rely on carers to take you out, everything has to be planned in advance because my carers only come on certain days, such as Fridays. I can ask for other days, but I need to plan ahead if I want them to come on other days. I use my respite care to meet up with friends, and I enjoy that, but there’s nothing spontaneous about it. I know that there’s not much that can be done about this, but it just irritates me.

I am on my local housing list for a two bedroom property that is adequate for my needs. When I eventually get a property of my own, I will need a live-in carer to support me to live as independently as I can. Earlier in this post, I mentioned that it is extremely important to have a good relationship with your carers, this is even more important when you have a live-in carer because if you’re like me, you have to rely on your carers, day in and day out. But if you don’t get on with each other and if you don’t feel comfortable with them in any way, it’s just not going to work very well at all.

So, to summarise, you’ve got to get the right carer for you, including matching your personalities. If something changes, and things don’t feel right any more, don’t be afraid to swap and change things around. I think that’s about all I have to say about having to rely on carers.

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