The role of a parent carer is often overlooked or diminished. However, those caring for their children know that it takes great strength and comes with extremely challenging experiences, especially those caring for children with special educational needs (SEN). The role itself often involves administering medication, assisting in daily life tasks, and advocating for your child/children to be heard and supported.
Lisa has been caring for her three daughters, aged 21, 19 and 17 years, since she became a mum, having only recently identified as a carer in the last few years after her daughters were diagnosed with autism, ADHD and anxiety. Whilst her husband is supportive, he works full-time, meaning that the caring responsibilities fall solely on Lisa as she is at home with the girls. Each of her daughters have different support needs, but all require Lisa’s full-time care. Her youngest also has sensory processing disorder, hypermobility, a thyroid condition and selective mutism, which means that Lisa has to speak on her behalf during meetings and appointments.
Lisa’s daily tasks include arranging and chaperoning appointments, sending emails and making phone calls, administering medication such as pills, and accompanying them to the shop. When you are caring for neurodivergent children, each day is overwhelmingly busy, “Having children with additional needs, there is way more involved in day-to-day life. It’s a pressure that is on you 24/7.”
It’s become hard for Lisa to make time to socialise with anyone outside her home which often leaves her feeling isolated with no one to talk to. Like many parent carers, it’s impossible for Lisa to find the time to work, although she would like to, which leaves her feeling stuck in her caring role 24/7 with no breaks, “I don’t really get to take time out for myself. Even if we go away on holiday or anything I still have that role. I do like to have a walk where I can but fitting it in is difficult.” Being a carer has also had a huge impact on Lisa’s marriage, “I find because of the commitment of the caring role is basically 24/7 that you can’t even have a conversation let alone find that important time for one another.”
Every parent feels exhausted at times. For Lisa, whilst there are rewarding aspects, the weight of caring for her three daughters can sometimes feel daunting and leaves her feeling stressed, “It can leave you feeling that you want to run away and disappear. You always feel like you’re being pushed into a corner of a room and its getting tighter and there’s no way out.”
Making sure she is present for her daughters sometimes takes a toll on her own wellbeing. She feels that she is constantly worried about her own health, having had a hysterectomy and suffering with IBS, but her main concern is making sure she is fit enough to care as her children rely on her.
Another struggle that Lisa faces is trying to get healthcare professionals to understand her daughters’ needs and how this impacts the care and support they should receive. She shares, “When I go to an appointment, I always have to explain that my daughter is autistic. I don’t think enough people are being trained or care or understand enough. Nobody has any idea what a carer goes through.” She also mentions having to fight to get her daughters admitted into a SEND school, so they could access the additional support they needed.
Lisa expresses that she had a very difficult childhood, and this has affected her emotional wellbeing. Having experienced abuse at the hands of both her parents, she would like other carers who have had a similar upbringing or faced similar challenges to know that they are not alone. Lisa found Carers First and attended counselling a couple of times, which encouraged her to share her story. Her experiences highlight the resilience and strength of parent carers and the importance of recognising your role.
For parent carers like Lisa, it can sometimes feel like there is no support or that no one truly understands what you are going through. You may feel a sense of judgement or isolation, but know that there is support available. It helps to talk to other parent carers who can empathise and relate to your experiences.
If you are a parent carer who can relate to Lisa's story, Carers First is here to support you. We provide personalised advice and support to help you thrive in your role. Get in touch today to learn more.
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