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Today is a tearful and glum day. Consumed with regret (among other things). Yesterday I received a bit of a shock – a bill for around $8000 for Bob’s care from 25 Jan until the end of Feb – at $205,10 per day.

Technically I think we’re only due to start paying from 12 Feb (I was told we had government funded respite care available until then) so hopefully a little under half of that is actually due for payment soon, but even assuming that this is halved it still came as a really rude awakening.

Care is going to cost nearly $1500 a week until we fall below the asset threshold for a residential care subsidy from the government.

It’s not a big drama in one way. We’ll get to keep the house, a car, and assets up to $123 000 – so it’s not dire out-on-the-street stuff. But the upsetting part is that it does make an awful mockery of the choices I made early on after Bob’s stroke.

Choices to keep busy, keep earning. Choices that meant I wasn’t really there for Bob when I could have been and we both could have appreciated it. (For those of you who don’t know Bob had a massive stroke on 9 September 2015, he improved for a while and then began to deteriorate and has recently been diagnosed with post-stroke dementia).

Yes – busy was a coping mechanism and a way to cling to any vestige of normal… or hope of normal… but in hindsight it was hard, and a total, total waste of effort if all I’m going to do is pay out dearly until we’re considered poor enough to qualify for a subsidy.

Any money I might have saved is going to be thrown at an organisation at $1500 a week in an attempt to maintain my sanity while distracting Bob in care when he really only wants to come home. I feel such a fool for trying so hard for so long; trying not to draw on savings… trying to take care of everything… trying…
I’m sorry that I didn’t stop working early on. I wish I’d taken the two of us on one last holiday… And, of course, I wish I’d had the strength and courage to stand up for me and stop trying to take care of Bob sooner, before hitting the wall and breaking down.

Watching someone as fit, healthy, intelligent and determined as Bob try to deal with developing dementia after a massive stroke has to be the most brutal road I have yet to encounter. Perhaps the ultimate lesson is that mind over matter philosophy that drove so much of Bob’s life, and I guess mine in the carer role, really does have its limits.

There are so many things I would have done differently after Bob’s stroke, with the benefit of hindsight… Bills for care have shone the hard light of hindsight. I know I was doing the best I knew how and need to stop beating myself up for things I couldn’t foresee… so the best I can do is offer advice… and that would be to put both your relationship and health before finances. If you have savings – draw on them and love and live a little. There’s no need to be a martyr. It doesn’t appear to pay off in the long run.

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