Ten years after I wrote about the difficulties in planning a holiday with a disabled spouse, I find myself still doing it. Now that's a surprise!
Over the past 10 years, Anita has gradually become more restricted in her movements, and now cannot move her hands, right arm, or legs at all, and only weak movement of her left arm. This has required fitment of a head array to her wheelchair so she can control it with movements of her head. What does this have to do with holidays, you may be asking by now ...
Well, we can't leave Anita alone for more than a couple of hours, and she ceratinly can't come hiking with us in January across the south of Tasmania. So what to do? There are a few options:
Respite care in a residential facility, but NOT in Tennant Creek! The facility here is, shall we say, suboptimal. Alice Springs may be aan option.
- Take her with us to Adelaide to stay with relatives.
- Take her with us to Tasmania and find a respite facility there.
- Hire a live-in carer to stay in our home while we are away.
- Cancel the hike and do something else because it's all too hard.
We ruled out taking her outside the NT as the logistics are a nightmare, so that left hiring a carer or cancelling the hike. Anita didn't want us to cancel the hike, so it was time to hunt for a carer prepared to stay with Anita for the 14 days we will be away. Fortunately, one was found and signed up, so that's one hurdle out of the way.
The only other thing to get done for Anita's safety is for modifications to be made to the front door of the house so she can exit and enter without assistance. This requires widening of the door, and fitment of an automatic system trigered by a proximity key. Then when Anita drives her wheelchair to within 2m of the door, it opens for her. Everyone else has to use a normal key. Sounds like a cool plan, right? Sadly, it's just a plan. I have been waiting for over a year for ARRCS to do what we paid them to do and coordinate the modifications. Looks like I'm going to have to arrange the job myself, so another dollop of taxpayers' money has just disappeared. Of course I'll have to get new quotes, and now the builder is super busy so it'll probably be another 12 months before the work can be done.
What this debacle meansis that we'll have to hire the carer to provide 24 hour care for Anita for safety.
For those of you wondering how a disabled person can travel out of Tennant Creek to go on holiday, here's a fun fact for you. They can't catch a plane or a bus unless they can get on and off by themselves. So they have to travel in a private vehicle. And of course NDIS don't fund travel by private vehicle. Naturally.
Anyway that's it for this rant or ramble of whatever it is.
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