Talking with Marie, a parent-carer for International Women’s Day.

On this, International Women’s Day 2022, we are celebrating and shining a light on the wonderful female carers who juggle work, families and their caring responsibilities.

Marie is 50, and has 2 grown up daughters, 22 and 25. She is an unpaid carer for her younger daughter who has complex needs and for her partner.

We spoke with Marie to find out how life was for her.

Tell me a bit about your caring responsibilities?

I always find it really hard to talk about this. I care for my 22 year old daughter. It’s complicated, as she was not diagnosed until 15, she slipped through the net. So those first 3-4 years we were fighting for everything only to find there was nothing she or I could get. We get no personal health budget or support at all.

My daughter has epilepsy, and a chromosome deletion, with a learning age of 5-9-11. Because it’s all hidden, you can only see it if you know her, she does not communicate much. We tried social care to get some help, and we were refused. 

I challenged again and it was still a no. The problem is, she’s borderline, in between needing help and not needing help. The epilepsy absolutely exhausts her - there was a time when she was having 6 seizures a day or more, and we were having to wait for appointments and stuff like that. 

What’s your professional background?

Because my Partner has a serious mental illness I became a elected community rep for adult mental health in my area for 4 years. And because I had an unstable daughter, I chose to become chairperson for a parent carer forum which I have been doing for about 13 years. Then I became another chairperson for carers forum, in my local area and again for the local carers strategy.

I have been working in education, health and care for quite a while and am, now currently at the University of Hull completing my 3rd degree. My previous degrees are a BA Hons, and Masters in English, both I completed during my caring and working role.

Tell me 5 things about you:

• I am cos player, when you dress up as a character from films. I have been a Star Trek Cling-on cos player since 2012. 

• I make all my own costumes, using liquid latex, to make the foreheads - make all costumes out of old clothes or whatever. 

• I love sci fi genre and anything to do with it.

• I listen to 80s music and my favourite band is Duran Duran - I have their new album.

• I have to challenge and fight for services a lot. We live in North East Lincolnshire, 30 miles from Hull.

Do your colleagues know about your caring responsibilities?

When I started with the mental health nursing it was during 2020, when the lockdowns began. I became a carer for my mother, father, and stepfather at same time. They could not go out because of their illnesses and my partner is clinically vulnerable so I had to let everyone aware of what I was having to do. I had to do all of this along with the Uni work as well.

On placements I have to make everyone know as I have to have every Thursday off - because that’s the day I have to sort out my partners meds, he can only have a week’s worth at a time. I have to sort them out every Thursday - it can be a nightmare.

Are people supportive?

At the University I was allowed to apply for extra time for exams and essays, I could hand things in later.

I have more support in North East Lincs than I do at Uni, even on the placements I have been,  I have had to have every Thursday off. I make them aware right away and explain why. It’s something I need to sort out as soon as I can.

What impact did the pandemic have on you?

Yes, it’s affected everyone in so many ways. I had to fit everybody else’s lives into mine. My father had a breakdown during the first lockdown and has not recovered at all. It was quite severe. When we were allowed into his home I thought ‘oh my god’ I knew this lockdown had really done some damage. So I had to sort that out as well. I am still a carer for my dad now. My mum and stepdad are fine.

So the University is very flexible and accommodating?

Yes, I planned this change in my life in advance; I researched everything I could about carers, what my rights were and asking for reasonable adjustments all the time. The only issue for me is working within covid and wearing PPE, because of my partner being clinically vulnerable, it can be a hindrance. 

How could you be supported better?

I will direct people to CarersUK and explain how my life is and how they can help me achieve my goals of becoming a mental health nurse. I have not had any issues but if I did I would know what to do and would challenge them.

What is the biggest challenge of working and caring?

My most recent placement was 26 miles away, so I had to incorporate my caring role in the morning. Walking my dog, doing everyone’s meals, making sure everyone was comfortable before I left. 

I would get up at 4.30am and do all I could. Leave the house at 6.45am, and do a 14 hr shift, come home and try and interact with my partner and daughter and go to bed, get 6 hours sleep and do it all again. That was quite hard, it also gave me a view of how becoming a nurse or working shifts is a conundrum, but it’s a thing we have to do.

What do you get in terms of support?

I was invited to see a show, I could not go because I was at work and the organisation went out of their way and told me they could organise it for a day I was free and paid for my place, I enjoyed the night out. I do a zoom with them if I have issues. At Christmas we went out for a meal - it’s just trying to fit it in whilst working, it’s really hard. That’s one of the issues - trying to fit in any break whilst you are working.