Raising a medically complex child is an extraordinary challenge for anyone. Finding balance between caregiving working alongside your personal and working life can often seem like a changing enigma.
However, the last four years I have tried to get my own balance right caring for my own two complex girls Sienna and Scarlett. Sometimes the balance tips in the wrong direction. I am learning this can’t always be avoided, life can throw us curve balls.
In this blog post, here are five effective ways I have used to restore some balance and order.
I have stepped back from my customer facing job role to work more flexibly from home or sometimes alongside a hospital bed. Reducing my hours makes it easier to accommodate medical appointments and care needs.
Most bosses have empathy towards family health situations and being honest and asking for adjustments that enable you to still work in some way is often better than parting ways permanently. Covid taught us many roles can be done from home and in flexible arrangements.
Find your tribe.
Remember, asking for help is a sign of strength, not weakness. As soon as I stopped proclaiming I was fine and started asking friends and family for a little support, help came pouring in (not necessarily in hours of childcare on the ground).
I have got a handful of friends over the last few years that are able to hear out any situation and offer useful practical tips. Equally I am happy to give back to them my own knowledge on a matter. Family even offering to grab the odd prescriptions can make a huge difference in a tight schedule someday!
Managing the medical appointments
Mastering time management is crucial when juggling work and caregiving. Ask if the outpatient appointment can be moved to a day you didn’t have plans on? Ask if this can be a telephone appointment? Nothing to say and a routine appointment, can it be postponed for 6 weeks?
We make some protected time in the calendar that only urgent or emergency appointments can take place; Summer holidays, birthdays and Christmas events are areas I try to avoid after spending the girls’ 2nd birthday at a 2-hour physio appointment highlighting all the things they couldn’t do. They are only kids once.
Many communities offer some form of respite care relevant to the child’s age and needs, some in the day or even overnight to give carers a break. TAKE THE BREAK, GET THE SLEEP! For us in our area this looks like hospice respite stays a couple times a year.
We also have some support in the home and in community for days out. Since having a couple nights sleep a week it’s enabled me to face the week ahead and see some light in the cracks. Again, it’s not weakness taking the help, we can’t as carers pour from an empty cup.
Perhaps the most critical aspect of maintaining a healthy work-life balance is prioritizing self-care. Often tricky to plan in regularly or particularly if a child’s health status isn’t as stable, it may have to go bottom of the priority list for a minute.
As soon as life allows again planning in the odd date night, going for a walk, or doing a hobby you enjoy can really help. When life doesn’t allow quite as much time to go out and physically take time away from your caring role, meditating, journaling and practising gratitude may help. It could be as simple as reading a prompt sheet and thinking back to your day and every tiny thing you have accomplished.
This can massively help with creating a positive mind set. Tiny habits add up consistently to some significant changes. Looking after yourself not only improves your mindset, but it also often improves your wider attitudes towards work and how you view your role as a parent carer.
I wish I could practise what I preach, sometimes the balance is all out. I can work and barely find time for myself, or the girls get unwell and I miss a school event that I desperately wanted to go watch but know my caring role takes precedence. When the dust settles remembering I count too, as does all our family and working ultimately helps pay for our daily life can sometimes put my caring role back into perspective.