This year's National Carers Week celebrates the millions of carers around Australia. It also shares a similar theme to that of World Cerebral Palsy Day - A Million Reasons to Care. CPSN's telehealth nurse Amy, shares her many reasons to care as carer to her twin sons who have cerebral palsy.
National Carers Week (10-16 October) recognises the diversity of caring and the diversity of reasons to care for someone. I personally have many reasons to care and many reasons to also love my role as a carer, so I wanted to share a few of my thoughts, some advice and resources that I have found valuable.
For me, it took a while to identify with the role of a ‘carer’ to my twin boys who have cerebral palsy. In some ways, this carer role differed to my role as a parent to them and as a parent to their elder brother without cerebral palsy. I value my experience of being a carer. I feel proud to be helping my boys shape their stories and reach their full potential.
Like all roles, I have days where I love it and days that I find it incredibly hard. The boys' additional care needs, countless therapy appointments, long mealtimes, and hospital visits, as well as fiercely advocating for them and navigating the NDIS - all make up my role as carer. It also leads to an overwhelmingly busy life.
Although there are many challenges to being a carer – there is also great happiness and reward. In my household we celebrate every little milestone reached - everything my twins achieve is a big deal. I watch my boys with so much pride as they develop into the little people that they are, and see glimpses of what might be to come. I can also see the positive impact they have on others around them.
I see the kindness and empathy their big brother has learnt. Siblings often provide some level of unofficial care - from helping to get a snack, to counting with his brothers to help them settle. I asked him what his reasons for helping me care for his brothers are, and he simply said; “It means everything to me; I love teaching them things and helping them to learn”.
According to Carers Victoria there is a massive number of 2.65 million carers in Australia. That is 11% of the total population. Carers provide a huge contribution to the community. However, the role of the carer often remains under recognised and undervalued. Carers should be celebrated for their contributions to the community and most importantly, their needs and rights to fulfill their own lives should be made a priority. This also means that there must be appropriate support made available for them.
Although my role as carer is still quite new, I want to share three pieces of advice I have found useful so far.
1. Find a good support system
I often hear the term ‘finding a tribe’, Whether you can find a ‘tribe’, an informal support system made up of family and friends, or a formal support system of professionals - finding support is vital.
2. Connect with others
This could be through a support group. CPSN have two wonderful online support groups for Parents of children with CP and Carers of individuals with CP.
Maybe it could be listening to a podcast or reading a book. My favourite podcast is Too Peas in a Podcast, produced by two mums of premature twins with disabilities - experiences I closely relate to. I have also read a book written by the ladies behind the podcast called The Invisible Life of Us and another book titled Special, which explores the early stages of navigating a child's disability.
3. Prioritise your own needs
As carers we are particularly good at prioritising the needs of those we care for. We are champions at it, but often this results in less time and less ability to prioritise our own care and needs. It is a tricky juggle and one that can take a long time to find a balance, but I do strongly believe we need to prioritise a healthy balance. Earlier this year I hosted a Webinar on Self-care and wrote about How to Achieve Good Mental Health.
Self-care is an individual journey, and it will look differently for everyone. For me self-care is having time to myself even for short periods, but regularly. From seeing friends and family, to reading, writing, and when I can find time to even squeeze in a facial. But self-care can be anything, and for most carers we need to start small. Maybe it’s simply having five minutes to yourself with a cup of coffee. Maybe it’s going for a short walk while your child is with their support worker, or maybe it’s simply watching a favourite TV show before you go to bed.
For myself, prioritising ‘me’ was also about returning to work. I first returned to work when the boys where around one, however I quickly realised I would need to take further time away from the workforce. While I was so grateful that I had the time away to care for my boys, I eventually began to miss the 'work' me. I gradually returned to sessional teaching and then commenced my role here at CPSN earlier this year.
Returning to work has been an important part of looking after myself, as well as maintaining a life outside my role as a carer. I do hope that in the future, there is greater support for carers to pursue their careers, and feel comfortable exploring a life outside of being a carer.
The following organisations also provide great support and resources for carers:
Carers Victoria
Association for Children with a Disability
Brainwave
Cerebral Palsy Support Network