How did you become a Young Carer?
“My father was diagnosed with a rare degenerative muscle wasting condition when I was very young.
I was always aware of my father’s condition, but also knew no different, and as my father’s condition progressed my caring responsibilities increased very gradually.
As my parents had separated earlier in my childhood, one of my brothers and I lived with my father 50% of the time. My responsibilities increased around the age of 13 years old but I did not recognise that I was a Carer, as life for us did not change drastically or overnight. During this time we would assist with the management and running of the household (cooking, cleaning, shopping etc.) and assist occasionally with falls or incidents.
When I turned 16, my brother left home for university and I moved in with my father full time to become his sole live-in Carer. At this time my responsibilities increased and included more physical, personal and medical care or assistance.
I am now 27 and my father has a 24/7 care package provided by an incredible team. I am very grateful to now have such a strong support structure in place. I do still support with physical care and administrative support to the wider team, in addition to my day job and a owning a part time business on the side.”
What impact did it have on your life at the time?
“Looking back now, I realise that I felt some disconnection with my peers and friends at school. Being a Young Carer can sometimes leave you feeling socially isolated.
Although my close friends knew and were supportive of my situation and the demands of my home life, it is difficult for someone to have a full understanding of what that larger responsibility and commitment actually means day to day, without experiencing it themselves.
In the early stages of my father’s condition, although I did not have as much free time as my friends, I was very fortunate enough to still maintain most elements of a typical teenage social life.
One thing I did struggle with was an underlying anxiety, guilt and an internal need to be present. Taking some time out for myself or to spend time with friends often resulted in thinking more about the person I was looking after rather than committing myself to the moment.
As an adult, this is still something I acknowledge, work through and address internally every day.”
What do you think is the lasting impact on your life now?/What did you find most rewarding?
“The relationship and connection I have with my father is extraordinarily strong and something that I am so grateful for.
Throughout this journey it was (and still is) so important to me to be a person my father could trust and rely on.
I gained so many skills at a young age including:
- Emotional intelligence
- Planning and problem solving
- How to approach challenges, overcome obstacles and act calmly in emergencies
I now pour myself into helping people and creating lasting and meaningful connections within my life.
The skills I have gained from an increased responsibility at a younger age has shaped and equipped me to be a better daughter, sister, wife, friend, colleague and business woman.
I believe a majority of these attributes have been enhanced by being a Young Carer and are extremely valuable to who am I as an adult and in the life I lead today.”
What impact did it have on your career?
“I found secondary school difficult and lacked both concentration and motivation particularly with exams and homework. I don’t ever remember telling my teachers that I was a Young Carer, for fear that it made me ‘different’, but looking back now, I wish I had.
I left school to work as soon as I was able to, but with a higher increase of care support at home, in my early 20’s, I was fortunate enough to return to education and study towards a higher education diploma, which I really enjoyed.
I do find that in both my full time work and my part time business, I sometimes require additional adjustments and support. I will always be a Carer first and foremost and I ensure that I communicate this effectively and clearly to those I work with or for.
Juggling study or work whilst caring for someone can be difficult. Thankfully my current employer and my business clients are considerate and supportive of my situation, which at times, can require some flexibility.”
What did you find most difficult about being a Young Carer?
“I wrongly assumed doing everything on my own was the best way to approach my caring responsibilities.
I often felt that if I gave responsibility to someone else and something went wrong, it was out of my control. If I was in control and something went wrong, I could take that worry and know I had done all I could do to handle the situation.
If I had an offer of support, I found it very difficult to accept, but I now understand how important this is to the wider picture and my father’s health and wellbeing, in addition to the strength of our relationship.
It is important to recognise that our function and ability can only improve when we let others in to support us.”
Did you feel you had enough support from: Family? Friends? Organisations? What could they have done to help?
“I was fortunate enough to receive some financial support from the Local Authority, in the form of Carer’s Allowance. For a short time, once my working hours increased (meaning I was no longer eligible to qualify for Carer’s Allowance), I received a small annual support payment for respite.
During this time, I had ‘check-in calls’ from a lady who would discuss my responsibilities, how things were going, and what support was available to me. When I had my first call I remember feeling a little uncomfortable discussing my situation with someone I did not know, but I soon looked forward to these calls and always felt mentally lighter afterwards. I also appreciated the continuity of having the same person call me and know my case without having to provide explanation.
Reflecting now, I do wish there had been an offer of support focused around:
- Emergency planning
- Training (Health and Safety etc.)
- Emotional support (signposting for counselling or funded mental wellbeing support for carers)
I often found it difficult to communicate what I needed or what would have been helpful at the time and a lot of formal support systems seemed to operate on a ‘if you don’t ask, you don’t get’ basis.
I feel it would be have been valuable for advertisement or organisations to prompt thought with selective open questions around what would be useful to Young Carers with services subsequently offered. If you do not know the support is available or exists, it can be difficult to ask for it.”
What would you say to your younger self as a Young Carer?
“Recognise that what you do may appear out of the norm but is incredibly important, valuable and very special.
The reward and impact on your life as an adult will far outweigh the struggles and challenges.”
What advice would you give to a Young Carer now?
“Research and access support– let people in, even if this means taking small steps at first.
Embrace and celebrate being a Young Carer– you’re doing something amazing.
Find something just for you – you deserve to have a rest and to enjoy your own time when you can.”