Simon*, aged 23, shares his views on what it’s like caring for his mother with early onset dementia.
When did you first realise that you were a carer?
Only when individuals around me used the word “carer” regularly did I recognise myself as one, this wasn’t until a few years after my mother’s diagnosis. Even to this day, I just see myself as a son helping his mother.
How has being a carer impacted on your life?
Helping a loved one to receive the best quality of life is emotionally rewarding. Knowing that you are actively helping in keeping your loved one happy, safe and at home is a reward worth more than money. It grounds you, forces you to mature at a quicker rate and take heavier responsibilities. It’s hard at first, but once you get the ball rolling, it builds character and decision making, crucial traits to have in the future.
What does an average day look like?
Cooking, cleaning, washing, schedules, routines, physically helping my mother throughout the day, alarms to prompt medication and appointments set in advance. Ensuring that nothing is overlooked to limit any bumps in the road.
What advice would you give to another young person in a similar situation?
Know your limits, you may not think that you have any, but we all do. Asking for help doesn’t mean defeat, it means that you still want to be a caregiver and you’re not willing to give up yet. Be it physically, emotionally, or financially, there is help for anyone who asks.
Is there anything that you would like to see professionals doing to support Young Adult Carers?
What needs to be done is to improve funding from the government to the professionals helping young adult carers, to reach everyone out there who needs help or information and does not know where to look or what steps to take. The subject isn’t being talked about enough and it needs to be brought into the light.
* Carers name has been changed
Leigh is 20 years old. She shares her experience of caring for her mother and how professionals in education settings and health and social care can support young carers.
“Being a carer can happen to anyone, that is the key message that I want you to understand.
But sometimes it is gradual over time.
It can happen whether you are aware of it or not, sometimes things can change quickly and you become a carer because a loved one is in an accident.
If someone who you are close to or related to ends up in a situation where they need help it is a no-brainer to help them, but when that becomes a lot of help that you are providing it can be hard.
My mam got gradually worse over time, around 2015 she started to need more support with her health, it is very up and down.
If there are any health professionals that meet people who have either a physical or mental health illness who couldn’t manage without support it is really important to ask them ‘is someone at home providing care and support?’
And to know what to do if they say yes.
Pass on the right information.
As a carer a lot of the things that I do day-to-day feel like common sense to me, my mam is poorly so I help her, because I just do it I hadn’t realised that my life was any different to other people but now when I look back I realise I could have done with some help sooner.
A lot of what professionals can do is to find the time to listen and understand. Understand that I might need the right information explained to me as my mam might not always remember everything because of her health.
Schools also need to understand that young people with a caring role might need extra support. If a student has poor attendance its not that they don’t want to be there, it might be that they are caring and just need more help.
Don’t assume that people know that they are carers.
Don’t assume that people know that there is help available for them.
Everyone needs to be more aware of carers.“
Hannah is 22 years old and cares for her Grandad and mother. Hannah shares her experience about being identified as a carer and having a duel caring role.
“The fact that I am a carer for my grandparents, this type of caring role often gets overlooked, and also the impact of caring whilst I was at university.
Caring for my grandparents, it was harder to identify me as a carer because often it was assumed that my mum was the main carer, yes my mum does care for my grandparents but the level of care that they needed was so great that we were in it together. I was still required to provide physical and emotional support on a regular basis. This was also added to as at times my mum also struggled with her own depression, this meant I was often caring for 3 people.
Looking after grandparents was very emotionally challenging, a lot of their health problems, were only ever going to deteriorate. I often felt trapped in the house because there were three people depending on me.
My mum was identified as a carer before I was, ironically it was because I spoke to the GP and told them how much I was really struggling, physically and mentally. They picked up on the caring situation and spoke to my mum about getting her some help, this was really useful and it worked because we both have the same GP but it still took a little while before I was able to access support as a young carer.
This brings me on to the issues I faced in education. Caring was really challenging during the time that I was sitting my A-levels. I had to repeat a year and I changed 6th forms, the school I had been going to didn’t have the right procedures in place to support young adult carers, I had shared information about my situation but they had a high turnover of staff and I had to keep repeating things over and over, they didn’t have the right structure in place to support carers effectively and record the information that I was sharing so that I didn’t have to keep repeating and reliving challenging situations.
The new college were better, I had the regular contact that I needed and the support and encouragement from a teacher that made all the difference to me. This helped me to see university as an opportunity, I was encouraged to go to a university that had the right course for me, the subject that I was really passionate about studying.
As we started to get more support in place for both my mum and for me and with the extra encouragement I was able to apply to study Environmental Conservation at Bangor University.
Bangor University were incredible in their support. They listened and they helped to put support in place to meet my individual needs as a carer.
Don’t make assumptions, anyone can be a carer. For a long time it was assumed that I didn’t want to try at school, that I was late because I couldn’t be bothered. In reality all I needed was for professionals to recognise my situation and help me to realise that I was a young carer.
Because I was recognised as a carer I am happy to say that I graduated with honours this year. I am now taking a year out, caring for my Grandad full time as his health has got much worse but I hope to go back to university next year to complete my masters. I’m happy to say my own health is now also so much better.
Being a carer has often felt like starting a race when everyone else has a five second head start and I am trying to catch up but I have a huge weight pulling me back. I don’t think I would have made it through my degree if my mum and I hadn’t both been recognised as carers and given the help and support that we both needed.”
Grant is 25 years old and cares for his mother. He shares his experience of caring whilst at school.
“If I can say one thing, it is that it doesn’t take much to change a carers’ life.
I care for my mam, she has a lot of mobility issues, I have cared for her for most of my life but it became more intense when I was 11 years old, that is when her health took a turn for the worse.
There was one morning that instead of going to school I went to the hospital with my mam. That hospital stay was a turning point – for my mam and for me.
When she came home I realised she needed more help, at first I was confused, but she is my mam, I loved her and wanted to help. Before I would just help around the house but now I was caring for her on a more personal level, helping her get around, up the stairs, reminding her to take her medication and so on.
I remember being scared.
Everyone else I knew went to school as normal and afterwards went home to be a kid but when I went home I was caring.
If I wanted to spend time with friends they would come to my house so that I could see them and still care for my mam, it was easier that way, it was my normal, I didn’t try to hide caring, it was what I was used to, I was proud of it.
While I was at school I was always distracted in class, sometimes I couldn’t do homework on time, when my mam’s conditions flared up I couldn’t just leave her and do homework, she needed me. Every parents evening my mam would go around telling all of my teachers that I was looking after her, that it wasn’t my fault I couldn’t do homework every night on time (not that I failed to hand homework in regularly, only now and again) or that I couldn’t concentrate in class, I was worried about my mam and how she was coping at home on her own.
I struggled on, watching the ‘naughty kids’ act up and get attention; although I didn’t hide my caring role I was quiet in class, I didn’t act up, I was respectful, tried my best and repeatedly asked for help, I didn’t get any.
I didn’t join in, I was struggling to engage in school life, like most I was bullied for being different.
Because of everything I dropped out of school at the end of year 9 and changed to home schooling. With my mam getting worse, the bullying getting on top of me, it was easier to just stay at home.
All of this meant I didn’t get to sit my GCSE’s.
I didn’t want anything special, just a bit of support to make sure that I had the same opportunities as other people my age. The school even had head of years whose job it was to do that, but looking back I feel that I was failed by school, I was just a child and they didn’t offer me any help as a carer or tell me about the help that is out there for people in my situation.
It made me really withdraw from everyone/everything, started my anxiety off and made it really bad. I was still caring for my mam but at the same time she was looking after me, sitting with me all day, forcing me to do things she knew I enjoyed so I wasn’t just sitting there thinking about everything. I know if it wasn’t for her I wouldn’t be here right now, school ruined and almost ended my life but my mam saved me, by being there and taking me out of school.
I started by saying that it doesn’t take much to change a carer’s life. It really doesn’t. I challenge everyone to make the small changes needed to support carers.”
Sarah is 24 years old and cares for her mother. Sarah shares her experience about getting help and support.
“I first heard about Newcastle Carers in 2017, it was around February time, it was nerve-racking asking for help, I was nervous, definitely nervous.
I was hoping to gain confidence, get out of the house, interact with people. I felt that I had a lot of fear, my daily routine back then was that I spent a lot of time in the house with mam.
I put on weight. I just ate and sat with mam. I knew that I needed to make changes.
I was just hiding from the world, the house was my safe place and I didn’t want to leave it.
It is good to get out and interact. From then to now I have totally changed my life.
I wouldn’t have dreamt of going on holiday then, I didn’t think I could leave my mam, but now I can go away with strangers. I’m not scared anymore.
Newcastle Carers boosted my confidence.
I was heading down a negative path but now I’m going out more. Going to the gym with help from the Carers Wellbeing Fund. Going to the Young Adult Carer Group. And volunteering for other charities which I never thought I’d do.
I love it!”