For most children with serious illnesses, the aim of medical treatment is cure. Unfortunately, some illnesses cannot be cured and the focus of care slowly changes from aiming for a cure, to controlling symptoms caused by the disease and allowing the child and family to enjoy their time together.
That’s the reality for 15-year-old Georgie, her mum Peta, dad Jodi, and sister Cooper. Georgie suffers from an extremely rare condition called Aicardi –Goutières syndrome – a life-limiting disorder that mainly affects the brain and immune system. Here, Peta offers some advice for other parents and families in a similar situation.
Be kind to yourself and your family
There is a loss of life expected. With a life-limiting condition, there’s what they call a ‘chronic grief process’ involved in the palliative care of your child. This means that setbacks, changes, and life events may trigger a period of grief. This can make you feel lousy, and have real physical and emotional effects on you and your family. Over time, your family will learn to better manage these periods and subsequently shorten the amount of time it takes to get back on track.
Accept the help that comes your way
Some people in your life may not be able to step up. If that’s the case, learn to let that go. Focus on the help that is offered to you by your doctors, your hospital, any community support networks, and all the other beautiful people that this journey will inevitably put into your life. Don’t feel like you’re pestering hospital staff or support networks. You’ll have questions, and you’re simply trying to build the skills you need. If you accept the knowledge and support, your family will become the masters of managing at home.
Set up systems
Invest some time and money into setting up a well-managed care space with everything you need, exactly where you need it. This means everything will always be right at hand. Labelling things also helps the support workers put everything back in the correct space so you’re all on the same page. Another good idea is to set up reminders on your phone or computer for ongoing needs, such as pharmacy and supplies re-order emails.
Take each day at a time
Focus on the issues at hand. Your child’s condition may be due to deteriorate over the years. Try not to overwhelm yourself by looking too far into the future and worrying about things that are yet to arise. Try to master what your child needs now .
Keep something for you
I’ve been able to keep working part-time. With constantly improving technology and resources working at home is becoming increasingly easy, so it’s not a drama if I’m unable to make it into work. If it’s practical, try to keep up with what you enjoy – whether that be work, sport, or any other hobby you may have.
Keep moving
Caring takes a lot of physical effort. To prevent injuries, focus on your manual handling skills. I love dance and music, so I use this to keep my body conditioned, but also to have fun and move the negative emotions out of my body. Make time for whatever exercise ‘rocks your socks’. When you’re sleep and time deprived, it becomes easy to slack off – but even five minutes a day will have a positive impact.
Keep music in your life
My child has a great love of music. It’s magic for getting us through the tough times as well as enriching the good times. We have our favourite playlists that we use for our chest percussion and respiratory care. We love tracks that will lift our mood, get us singing or soothe our sadness.
Words to remember
I often find strength in this quote by Shing Xiong:
‘In the end, it’s not going to matter how many breaths you took, but how many moments took your breath away.’