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Parent Carers: On Call, On Edge

Parent Carers: On Call, On Edge

The theme for this year’s Carer’s week, from 8-14th Jun 2020, is ‘Making Caring Visible’.

This feels particularly relevant as during lockdown all parent carers have been quietly holding their families together in the privacy of their home with little, or no, outside support.

We are still largely hidden.

Our role is barely recognised by the limited carers allowance which is the smallest benefit of its kind (for those who can get it). It can even take time for us, as parents, to recognise that we are carers.  Yet is there anything more precious, and under-valued, than caring for another human being?

In my research into Emotional Wellbeing in Parents of Disabled children I found another largely hidden aspect of caring: that many parents live their life feeling constantly ‘on edge’.

This was illustrated by the parents who despite their child being away at respite couldn’t rest as they felt guilty, nervous and unable to enjoy the time for themselves. It takes time to adapt to this support.

It came out in the parents who even when their child is at school cannot engage in other activities in case, they get a call from school telling them to come and pick up their child.  It takes trust to relax when others care for our loved ones.

It was present in the parents who felt unheard or judged facing inadequate services or stigma and discrimination (ableism, racism, sexism and more).  Challenging bias and prejudice involves systemic as well as individual change.

Sleepless nights for parents worrying whether the service their child desperately needed would be provided.  Even hard-won support felt precarious and the battle continues in perpetuity. It requires a community to support a child with additional needs.

Add Covid-19 into the mix and many of us realise, yet again, that caring is up to us and us alone.

Therefore, part of what we need to make visible is that we are people with our own needs. Acknowledging that we are ‘on edge’ and making our anxiety visible to our self and others is an important first step.  No one can run on hypervigilance for a prolonged period of time without there being a cost to our own mental, and physical, health.

We want reassurance from society that others are there for us and will catch us when we, or loved ones, fall.  Indeed, this would be the biggest gift to carers. You can write to your MP by clicking on the link at the bottom asking them to show their support for Carers Week.

While we aren’t always valued by others, we can value ourselves.

Along with longer term goals of social change and recognition, what can help you in the immediate environment with these feelings of being on edge?

Time off

Even a small amount of time to ourselves is helpful in allowing us to re-calibrate and re-charge. I know it’s hard but it’s vital.  I realised early on in lockdown that I hadn’t had more than 10 minutes on my own during the day.  I noticed my irritability increase. I now make sure I have at least a 30-minute break in the morning and afternoon where I can put the television on for my children. Sometimes I just sit down with a cup of tea and take deep breaths and feel my shoulders relaxing.

Positive Others

Other people who you can talk to, share experiences or offload can provide a welcome distraction. You will know who these people are in your life – make the time to contact them for a chat or a socially distanced meet up.

Time away from online life

The news and social media can all become overwhelming, particularly with the current devastating news from around the world. I wonder whether we’ll all have an element of post-traumatic stress in response to the events of the last few months while we have had to hold it all together for our families. When things get back to normal (new normal?) will we have time to process what’s happened, to catch up with our psychological wellbeing and regain our balance?   Having time away from the constant flow of information provides a chance to digest what we have read and seen in our own time.

Having other things in our life

Caring for others is a noble life purpose but it is not all that defines us. We must have other interests, activities or passions in our life to maintain balance and emotional wellbeing. This means asserting our rights to a life outside caring and saying no to other less important demands on our time.

Tell people what you do and what you need from them, be proud of what you achieve and join together with all carers to make caring visible by adding your voice to the online network.

Add your voice

Ask your MP to show their support for Carers Week:,6W1AA,L800R3,RO2CE,1

Other wellbeing tips are available on the website

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jo Griffin

Meet Our Blogger

Joanna Griffin is mum to three boys including her eldest who has special needs. She is also a Chartered Counselling Psychologist and Founder of a website that signposts to practitioners and organisations who provide emotional support to parents of disabled children.

View Jo’s Profile

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