Young Carers Action Day – Axel’s story

9th March 21

Axel - Young Carers Action Day 2021This year’s Young Carers Action Day has the theme of protecting young carers’ futures. We have been speaking to young carers and young adult carers to find out more about how their caring roles affect their lives, and what they believe the future should hold for them and other carers.

Axel who is a young adult carer about spoke to us about what life is like as a carer, how the coronavirus pandemic has made an impact, and what would make a difference to carers’ and their futures.

Do you want to tell us about yourself and your caring role?

I’m 19. I care for my mum when I’m at home. It’s doing bits and bobs around the house, sometimes helping her to get dressed, it depends on the type of day she is having. I often say she has issues from her head to toes. She has issues literally from her ears to her feet.

What are you doing at the moment with your studies and education?

I’m living at uni at the minute. I’m a first-year special education needs and disability studies student. I’m also on the committee of the LGBT committee and officer responsible for students with caring responsibilities as well.

I am also involved in Norfolk Young Carers Forum and we have been doing all sorts of things with that. That includes the survey for Young Carers Action Day and we look at applications for the Carer Friendly Tick Awards. We have people from different professions come in to talk about their experiences.

I am also working with the charity Gaddum and we have been looking at things that need to change for carers who are LGBT and any discrimination that they face and what needs to change with that.

What impact does your caring role have on your education?

It is stressful, because I am living way from mum I can’t help her out as much as I normally would. It is seeing where I can help her, sometimes I have to send her money if she can’t afford things that month, which is no fun because there are also no jobs because of COVID.

What difference is the coronavirus pandemic making to your situation?

We’re currently looking for a place so we can get out of student accommodation. So, I’m looking at how my student finances will work out across summer as I will need to pay rent at this new place, and need food and if mum needs anything… it’s all a bit stressful.

It would normally be a problem anyway but because I am at uni I was trying to talk to my boss about work, with my job back at home, but I haven’t heard anything back so I don’t know what is happening with that.

At Christmas I was trying to get home to see mum. Because she is high-risk I had not seen her since last Christmas, I had gone to my grandparents over the summer. Because she is high-risk I did a two week quarantine and got to mum’s on 20 December. Then they announced you weren’t able to travel between Tiers so I had to come back to uni on Christmas Day. I have not seen her since and don’t know when I will be able to see her again.

How do you think the needs of young and young adult carers should be better recognised and addressed?

By taking into account people’s situations – I think they are generalising everyone’s situation. I haven’t seen my mum and don’t know when I will see her again. They need to do more to recognise the needs of carers.

When I was at home I had to go and pick-up meds for mum, and people were saying I shouldn’t be out and about, but I needed to be. When you’re caring for someone who can’t get out of bed you need to do things for them.

My mum has a personal assistant but they are only in for six hours a week. I am so grateful, she is also a really close friend of mum and will take mum to appointments and help with the things I can’t help with if I am not there. I talk to her a lot and make sure things are ok. When you have gone from caring for someone 24 hours a day 365 days a year to living away it is stressful.

More hours for personal assistance would be good. That would help mum and help me feel more confident mum was well cared for.

Just being able to find a way to get back home from uni quickly would also help. I don’t drive, and trying to get the train is an issue, so finding a way that, if needed, I could get to her more easily, that would help. Whether that is driving lessons or another way to make that easier. But that is a cost issue.

Not having time is an issue, I have things on my To-Do list for myself but there are just not enough hours in the day.

We have a new style of learning at uni called block learning where we do four weeks of teaching and then an assessment week. I have learning difficulties myself. Because we have essays that need doing each week and the assessment, and then my other roles at uni, and trying to keep in touch with mum and her personal assistant, and to do things for myself – it just doesn’t work. But it is important to me to be involved in what I am as the roles I am involved in matter a lot to me and I like to be able to help people.

We are getting things changed slowly with the course.

Looking forwards, what do you want for your future?

My experiences with my mum have made me aware of how inaccessible everyday life is to many people – whether that is for people who are hard of hearing or wheelchair users – I want to be able to make a difference to that.

I hope my committee and officer roles at the university as well as my studies will help with that.

I’ve looked at jobs already and I hope that if I can show I have already been dealing with people from all aspects of life, and helping with issues that they face that this will help me with getting a job in an area that I am passionate about.