Another year passes, another change in lifestyle

This one, however, is a big one compared with our last life changing decision - to go bush and get our lives back. Unfortunately I have a sneaking suspicion we may not have made the most of those twelve months, and freedom and independence may be a long way off again.

You've probably noticed from recent photographs Adam's younger brother has been visiting for a while. Just before Christmas their mother had a heavy fall which broke her collarbone, and Tim needed somewhere to spend Christmas and wait for his mother's injuries to heal.

Since then we've been forced to consider the difficult question of what happens to a disabled sibling when their mother needs to be relieved of the responsibility. However you look at it, Eileen has done her 42 years of looking after Timothy, and she cannot and should not be expected to do it until the day she drops dead. That's not fair on her, and it sure as hell isn't fair on Tim. As is the way of these things, the decisions that need to be made at these times have to take a lot of factors into consideration.

Firstly there's the level at which Tim can perform. We are acutely aware that his behaviour and level of achievement have gone downhill alarmingly in recent years - not really all that surprising as Tim will normally fit into whatever scenario is set up for him. Being a Mummy's boy is kind of his comfort zone, and he has undoubtedly and undeniably become childish and overly dependent in recent years. Since he's come to stay we've had a lot of talking to do about that - and let's be frank - a fair amount of yelling as well, because Tim needs (and is starting to) take more responsibility for himself. Obviously within the limitations of his physical and intellectual capacity - but his future situation needs to take into account a need for adult interaction, brain stimulation, considerably more physical activity and something to give him a sense of involvement in the real world in which he lives.

Secondly, there's the emotional needs of both Tim and Eileen, and of paramount importance - Adam and I. Neither Adam and I were comfortable with expecting Eileen to take up the reins again after she heals physically - that 42 year stint thing is on both of our minds. Adam is able, and quite used to dealing with Tim, having grown up with him, and having a close brotherly bond that works for both of them. It's considerably harder for me - I'm not a maternal person, I have very little patience at all with dependence, sooking and childish behaviour, and I struggle with Tim's behaviour on a number of levels. We never had children on purpose, and frankly I am very distressed at the loss of my independence and freedom.

But I share Adam's concern over his mother's wellbeing, and neither of us believe that the default position should be that he is pushed straight into Government care without at least looking for another way. That's not fair on Tim (he does have a large extended family and he is saddened that nobody wants him around), and it's not fair on Eileen who also should be able to expect that somebody else in her huge family would feel a responsibility for one of their own.

So Tim is coming to stay full time.

We certainly want Tim's mother to stay in touch, involved and spend as much time here with Tim as she wants, and we've been gratified and extremely sustained by the support and understanding we have received from people in the local area, as well as our friends and my cousin (thanks for the yak the other day Jude - needed that!) and we are confident that we will be able to call on a few shoulders and some practical help if we need it. We also intend beating the system that is "Government Services" and winning some concessions in terms of support, programs, accommodation (hopefully a granny flat type arrangement), so that Tim can have some independence and we can get (at least) our bloody bathroom and spare bed back.

Now we are now teetering on the edge of that never-ending stupidity that is Government Service provision (somebody is going to have to convince me that their utter lack of action and guidance is something other than a money saving exercise). Tim is now "out of one system" and not, it seems, able to be incorporated into another system without months of waiting time, so I guess they see that as a win.

How on earth that's acceptable on any level I have NO idea - what would be happening about now if Tim's mother had died suddenly doesn't bear thinking about.

So obviously "advocacy" on his behalf is going to require a lot of effort. We are - let's be honest about this - going to need some assistance to make this work... did I mention no kids. Therefore absolutely no previous need for involvement with the horror that is DHS and Centrelink and all that other bullshit. Frankly if somebody doesn't provide me with clear details on the expected process soon - I will go ballistic and start getting very very very pointed.

They maintain that you can tell a lot about a society from the way that it treats its most disadvantaged - families too for that matter. We're kind of lucky in one way as Eileen is still alive and able to assist with some of the details and the methodologies that you need to use. What the bloody hell happens if the parent is dead one can't help but shudder. Given the shambles that is this alleged support system, the chances of a moments thought for carers who have effectively been dumped into this mess... well I'm not expecting much.

Either way I am fully expecting a lot of tears before, after and during bedtime in the months to come. This isn't going to be fun. And this country sucks big time at dealing with the issues involved with Disability, Disability Support and Aging Parents (and a bloody lot of other things....)

1 comment

Comment from: Jude and Jan [Visitor]
Jude and Jan

We are only 1 and a 1/2 hrs away if you need just let us know or come on up welcome anytime, chocolates will be supplied as suggested Kaz!…..lol

17/02/10 @ 23:49


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