Saturday, 5 July 2014

Strangers in the house

Having a family member with complex care or health needs means having to compromise a lot. One area is that of privacy. We have so many people coming in and out of our house and many of them have to ask very personal questions.

We have carers, volunteers, nurses, physios, OTs, speech therapists, dieticians, social workers, teachers, reps from various companies, engineers setting up/repairing equipment and various managers of all the above people coming in and out of our house to check it is a suitable working environment for their staff all very regularly, as well as others who I can't remember now!

Long gone are the days where I would frantically tidy up and Hoover before each visit- there are too many visits now, and to be honest, I've got better things to be doing. So as long as the house is vaguely presentable (well, at least clean, if not always tidy!) they take us as they find us. Even if that is in our pyjamas!

A whole load of strangers also know (and write on a central computer system for others to read) lots of information about our whole family, not just Jess' health issues. They know many random things, and a lot of personal things, such as our family routine in the morning, and how my husband and I divide all the chores to how well we are coping emotionally with everything going on and the state of all our relationships - immediate and extended family as well as friends. It's a lot to share with strangers, but necessary to ensure that we, and ultimately Jess, get the help that is needed.

I've only just realised how intrusive all this is now we are beginning to reorganise our house to make it more suitable for Jess in the long term. Part of this involves us moving bedrooms - this will make much better use of our space and allow all Jessica's numerous supplies of nappies and feeding equipment to be stored near her bedroom, rather than where they are now, which is pretty much the furthest away from anywhere that Jess spends time as it could be!

However, an added benefit of this is that our new bedroom is much less visible to people coming into the house and needing to see/access/spend time in Jess' bedroom or to use the bathroom.

This wasn't deliberate, but I am quite excited by this - it feels like we are reclaiming a bit of space and privacy just for us.


  1. Hi my daughter is four and has autism and the nappies come in two huge , boxes so what your doing sounds great

    1. I know! It all just takes up so much space doesn't it?! Liz xx


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