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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,

Caring for a loved one with a disability - Have Wheelchair Will Travel

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.

Caring for someone with a disability - Have Wheelchair Will Travel

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.

Caring for a loved one with a disability - Have Wheelchair Will Travel

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.

 




9 thoughts on “The incredible admin involved in living with a disability or caring for someone”

  1. I hear you too. My sister lives in a group home an hour and a half from me. I handle all her medical, financial, clothing, etc., and NDIS stuff. It takes me 1-2 days per week every week, non stop. On top of this, when there is a crisis, I have to drop everything and go to her. This takes so much time and often involves overnight stays somewhere near her. It is relentless. Barely a day goes by when I have nothing to do for her. So, I hear you. 🙋‍♀️

    Reply
  2. I am a 58 yr old with a full-time job just managing my health. I actually have ptsd from my life-time experiences due to my health and care needs. When do I get to relax and just enjoy life? It is so exhausting and terrifying. What about the future when I am no longer able to be in control? When I will be dependent on some stranger who may care about me but has too many clients, too little resources, and not enough time to ensure my best life possible? Like I said, exhausting and terrifying. In other words, I get you. I understand. I empathize. I care. I love. Hang in there

    Reply
  3. I hear you Julie.

    I am a high user of my NDIS Support package and also manage my grandson’s (Age 6)NDIS package and have a veteran husband who suffers PTSD. I too feel most days that I am drowning and have little time for myself.

    I look at my inbox and can only get to the urgent/necessary things and other things get left behind.

    It would be good if somebody could wave a magic wand and it would all get managed.

    The thing that frustrates me the most is when I continually have to chase people for responses/answers that they said they would do and haven’t’ done. Do they not realize how busy we are!!!

    We just need to hang in there and know that we are doing the best we can.

    Thanks for you comments

    Reply
    • Hi Maree
      The admin seems endless. You must have double that work for both of you.
      I think it’s important to remember we are human and can only do so much. Most urgent first.

      Julie

      Reply
  4. My son has Cerebral Palsy and cannot walk. When he was smaller it was easy to lift him. Not so much now. He is getting heavier and I’m getting weaker. My older son’s dad takes one arm and I take the other to lift him in his wheelchair. That takes some of the weight off. My other son is Autistic. I worry what will happen to them when I die.

    Reply
    • Hi Carol,

      I think many parents share your concern about what happens to our children when we are no longer here. It is difficult to think about but I am also determined to make a plan so Braeden is well taken care of.

      Take care of yourself.

      Julie

      Reply

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