Charlie-Helen Robinson

The journey that started with “The hidden cost of becoming a sudden carer is more than just emotional” continues.

They say the older you get, the more childlike you become. But the aged maze is no kids playground.

You need to pull your socks up and act adult for a bit. That’s where that caring role comes in. What happens to people who don’t have a carer – or person to care for them? Makes me sad thinking of this.

As previously mentioned, if I share my story and help open the conversation, then this is a good thing, right? This is not a whinge or a “look at me”. It’s a reminder that there are literally thousands, in our community, doing more. How can we make this easier on all of us?

My mum’s recent and rapid health decline (due to a broken back) has thrust me into the spotlight of being her carer unexpectedly. There was me thinking I was just the happy daughter. Deary me…. let me please reiterate, the caring role is one I have embraced willingly, simply because I love my mum.

The caring role is actually a journey I started a few years back as her general health started to decline. Mainly due to age and arthritis. This recent bout is much more serious – with her moving into “high risk fall” and “high care” patient level with big pain levels. I have never previously titled my role “carer” (I’m a daughter) and I never expected the level of responsibility (she’s my mother). It (whatever “it” is) was always going to happen “later“. Not now. Perhaps. Or wasn’t she just going to slip away quietly in her sleep when she was 100?

Interestingly, during this journey I began working for an organisation called “Carer Support”. It seems I have been pretty naive til now as to the extent of how many people are affected by all this. True carers   (and there I go again not believing I am a true carer)   live and breathe my day, every day. True ignorance to think it only happens to others and not me. I stand corrected. I am a carer.

When all this did/does happen and you start to hear everyones stories you realise – seriously – just how hard we make it for each other? It’s something I ponder in my down times. We have this glossified and glorified view of a perfect world – and yet we are very far from it. I think that perfect world is actually the thing that happens to someone else? No one I have come into contact with lately has had an easy trot. Mum’s pretty sane but during the worse times in hospital she has been disorientated from pain relief. I’ve had to advocate for her. There have been times the hospital staff haven’t “talked to me”, they’ve just talked to her, and this has caused greater confusion simply because of her confusion about all of it. She is overwhelmed.

Then, on top of this are all the organisation and their demands. Bossy administrators demanding things happen immediately. I have never struck so many. Well, perhaps I have but it simply amazes me that in an apparent compassionate industry – they are not? Expectations exceeding capable timeframes. We all know how slow some organisations are – why therefore do we expect answers within a few hours? (/endrant).

We do what we can. But it’s stressful and this is, in part, the emotional journey that everyone goes through. It seems like it’s just “normal”.

The pain. Not mum’s pain, my pain… Hospital organisation. Current home organisation. New nursing home organisation. Respite organisation because the hospital doesn’t want the patient now. Family organisation. Family conflict because a) you haven’t told them, b) they don’t care, c) mum whinged and you cop it because they don’t understand you are simply doing your best. The list goes on. To the point that now we are moving furniture, belongings, downsizing and sorting finances out on her behalf.

She currently owns a unit (which was her home), had respite services at one organisation and is moving her daily care into a nursing home which will become her new home. There are three major contracts on the go. Each one want to know the ins and outs of every aspect of mums affairs, financial, service and health. Each have their own demands. And forms.

Then there are the regular service contracts, like Telstra. Oh and Centrelink (groan). Oh the forms.

Fortunately all this is happening while mum is still essentially sane and can help with decisions. Like dealing with her banks. As mum’s power of attorney there are legal ramifications that seem to take nightmare lengths and challenges to overcome before they will acknowledge me. And yet they need to if they want stuff done.

Don’t get me started on the forms and the certified copies of documents that are a copy anyway.

It’s all quite playground really. All that comes to mind is the book “What a mess“. Who thought up this system anyway? Why did we make it so hard to care for our elderly, who are our beloved family members dealing with feelings?

I ask you.