The journey that started with “The hidden cost of becoming a sudden carer is more than just emotional”
Is more like a playground
Is more revealing than expected
of not caring with dignity and it being a stop start stalling affair started to settle down with it growing on you. It then turned to The hidden impact of getting mum to smile.
I cried yesterday.
Sitting with mum, out at a coffee shop, she shared a snippet of a dinner conversation, where another resident had said her own daughter turned down a job working for the facility.
Curious, I asked why when her own mum lived there?
The response was along the lines of “she had her live there as it was the best of a bad lot in the region”.
Let’s just process that for a moment.
My spontaneous reaction was to almost cry, but mum caught me and said when we moved her in there, with all the research we had done, it was the best.
We were happy then (about our decision re care – of course not about mum’s health).
The nursing staff and rehab slowly sorted out mum’s issues from her fall and she became more mobile. However, these past few years have been tough on both of us.
So, I cried later, away from her eyes.
The journey is long and tiring. The hidden impact is now getting ME to smile. It has cost friendships, jobs and my health on occasion. It has caused me to revalue and evaluate many things in my life, with some now cherished more than ever before. Some obvious like the support of my family, but others include the sanctuary of my garden and my alone time. Finding peace. Keeping calm.
As mum’s carer, I’m needed for Doctor’s appointments, shopping, advocacy and as power of attorney for her financial affairs, and the weight is heavy. I’ve explained before, I do it because she’s my mum and I wouldn’t have it any other way. I’d prefer to just be her daughter.
She now has niggling health issues which are apparently common across aged care, rather than a chronic illness or reason for being in there. The stress and ongoing anxiety of constantly battling to get a response to these ongoing issues is draining for the both of us. She has ongoing financial issues with the Department of Human Services after they lost all her records from 2014. Due to this, we have ongoing issues with Anglicare. The stress and anxiety this past 18 months is almost PTSD like. I can not bear to see an invoice in the mail. I know it upsets mum. It doesn’t help her health (or mine!)
I entered my aged care journey to support mum; to help keep her voice and control over her life and to be by her side. I took jobs in aged care to understand the system, to help encourage change and lend my enthusiasm and communications skill. I have been successful to a point. I am a stickler for encouraging great news, good outcomes and best practice. I am a stickler for modern ageing. I am a stickler for sending appropriate messages and for communications that use empathy and compassion.
In my day jobs, I’ve been known to craft some pretty tough messages using pretty words to smooth things over.
Every aged care business is on a journey and they don’t always get it right. We can all aspire to be better, to learn, grow and develop but when humans are involved, it gets very complicated. To try and do the right thing by all is a massive ask. The public are watching. I’m one of them. I hear both sides.
My focus now is to keep mum as settled as possible among the “ best of a bad lot” and to encourage a better aged care industry for all. It’s what I dream of and believe in. I know others want the same. I get almost daily calls to discuss aspects of someone’s mum, aunt or friend with questions like, what should we do here, what could we do there.
Who teaches you to become an advocate?
Some make it their full time job but they are still unable to help. It’s true, I have basic skills through my time with Health Consumers Alliance (on their Board and via their training), however I’m no social worker, I don’t have indepth aged care financial knowledge and I certainly don’t yet fully understand this overwhelming complexity that the aged care system is. The people who are there to help, I have found don’t either!
It’s about time we simplified the industry. I personally hope the Royal Commission establishes simplicity because the constant arguments, opinions and attitudes from unhappy people within the industry are a real downer.
Time for the best of a good lot.
Smiles and customer service.
Care and compassion.