30 October 2009

A's favourite Blue Care visitor had arrived and was putting him through his paces. Usually I go off to run errands and get the groceries while a carer spends four hours with A. But this week I took advantage of her visit to have some hours in the garden without having to check on A, help him do this or that, or worry about whether he's OK.

Blue Care sends us a carer every Thursday for four hours, and it's a great help to both of us. But as was the case with hospital nurses, the health management folk who do these rosters seem to think it's best not to be consistent in their staff assignments. No doubt the aim is to prevent 'clients' getting too attached to individual nurses or carers, and in the Intensive Care ward where A was nearly comatose for so long this policy didn't have too many negative consequences. At least I could look forward to having the 'best' nurses caring for A as often as the less inspiring ones (and while I'm sure they were all well qualified, at least to me some made more interesting companions for the day than others; more importantly, when he was lucid A could understand some of them and not others, and only a few of them could understand his very slurry early speech attempts).

Now that A is able to function so much better, it's unfortunate for him and inconvenient for me that, just as a matter of Blue Care policy, we get different carers from time to time. 'Unfortunate' because it takes time for anyone to get used to A's communication style. And it takes him quite a bit of time to be comfortable enough with a new person to communicate at his optimum level. Then, I need to spend time explaining to every new person things about A and about the house. And each new carer seems to feel the need to read A's entire Blue Care file (which is getting pretty thick). But most importantly, A gets along so well with S (our favourite carer) and so looks forward to the hours he spends with her. So it's a shame when suddenly we get sent a different person, especially one whose communication skills leave a lot to be desired. S and A have a number of favourite activities – she's happy to help him with his puzzles and games, or help him bake a cake, or take a spin around the garden with him. But she also knows just how much to help, and how much to encourage him in his independence. Most of all, she likes conversation and encourages A in his speaking and writing activities. And his communication practice really benefits when he relates so well to his carer. All of the four carers we've had to date have been good, competent professionals, I 'm sure. But S just suits A so well. It's a shame we can't be sure of always getting her. I tried having a discrete word to Blue Care about our preferences, and that seemed to go down OK. So we'll see what happens in subsequent weeks.

The illustralion which closes this post shows one of the two-page spreads in the Penguins' Jigsaw Book (ISBN 978-1-74211-650-1), which we bought at an Australia Post shop recently for $9.99. The hard-cover book has five different 48-piece jigsaws, each with a bit of interesting information about one of five different kinds of penguins. (There were other books with different subjects, too.) Each of these puzzles is just enough of a challenge to give A a bit of practice with shapes and orientation – a kind of spatial awareness exercise which we think is useful to him.

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.