The incredible admin involved in living with a disability or caring for someone

The admin of life is slowly drowning me. I know, that’s incredibly dramatic but I honestly don’t think people outside of the disability community would understand what I’m talking about. I’ll preface the rest of this blog with the fact I know I am fortunate that Braeden is well and doesn’t require as much medical support as many other people. While I am juggling caring with the admin, I recognise there are many people who have far more on their plate. We are also fortunate to have access to so many services which make a difference to Braeden’s mobility and general physically well-being. It doesn’t stop me from getting frustrated at the amount of admin, some of which seems over the top,

People often assume that once you receive funding or help, life is a breeze. I’m not sure they understand the daily admin that goes into utilising services. Whether that’s emails, text messages or phone calls, every day I am responsible for so many moving parts. I think even I felt that when the battle for Braeden’s funding was over, I could get on with life again without so much paperwork. It’s certainly a huge relief to have funding in place that allows Braeden to live his best life and reach his goals but there’s a lot that goes into making it all happen. Text messages to confirm appointments, phone calls to change appointments and coordinating support worker hours around the changes and appointments. We love all our therapists and we are well supported but reports need to be discussed, progress needs monitoring and discussions about strategies are required to make sure Braeden keeps improving. Equipment trials need to be booked and attended and we’re always on the look out for anything that might make Braeden’s life more enriched and fuller.

Every time I think I have everything up to date I receive a new service agreement which needs signing, a form which requires a doctor’s appointment or a report that has to be supplied. Places like Braeden’s respite house require regular updates to transfer plans, meal eating plans and medication forms, even if nothing has changed. Webster packs (medication packaging required for respite) need to be made up by the chemist and be ready for the weekends at respite.

Lately I’ve been working one day at a time. It’s all I can focus on. If a form isn’t needed this week then it goes in the to-do pile. I’d love to get ahead of the curve but it seems no sooner than I tick a form or an appointment off the list, another appears. I know this must be doubled or tripled for people with higher support needs than Braeden. I can’t imagine how hard it would be without a supportive family who step in and take a few things off the list. Hubby and Amelia are amazing at assisting whenever they can.

When I travelled to the US for two weeks in June I realised how much I do each week that I don’t usually even mention to Hubby. I tend to just get on with it and only give him the highlights or lowlights of the day. Not all the mundane stuff in between because I find it super boring, and I can’t be bothered repeating it. The pages of lists I left him were a good reminder of all that I do.

It was all much easier when Braeden was younger. There seemed to be less red tape. I just want to get on with enjoying time together as a family and having fun.

I guess the point of this blog is to simply say, if you are struggling with the admin of caring or if you live with a disability and feel overwhelmed with all the admin, I see you.

If you have any tips on how to streamline everything, please share them. I’d love an insight into how you manage.