I’m just tired… tired of fighting over enthusiastic community nurses and their leaders; tired of trying to communicate with people that are just TOO busy; tired of trying to get some help and support… ANY SUPPORT, I’m just tired. They say carers have to take care of themselves, they need to find time for themselves… Easier said then done.
I can quite see how our older population end up in aged care facilities. Trying to access assistance can be one long frustrating process. The Government wants the aged to stay in their own homes for as long as possible yet doesn’t provide them with the means to do so… sorry, I’m wrong, they do provide the means to do so.. they just make it very difficult to access.
Take Ma for example. I take care of all her personal needs: I shower her, wash her hair, do her nails, take her to all her appointments, shop, cook and clean up etc. We access one and a half hours of housework a fortnight. With Ma’s deterioration she underwent an assessment with ACAT (Aged Care Assessment Team) back in early June where she was approved for a Home Care Package Level 3 and 4 which supports somebody with medium to high-level needs. This would have given us access to somebody to call in during the day. Yeah, I thought! Peace of mind so I can go to work and know that somebody will call in to see Ma during the day. Unfortunately this level of care has a waiting list… so after a month, I ring to see whether we can access care anytime soon. No vacancies I’m told! You basically have to wait until someone goes ‘off’ before a vacancy becomes available. Really? So, this is the Government that wants people to stay in their own homes? The more care you need, the less likely you are going to be able to access it. Maybe if they made care available there might be less people going into nursing homes.
All I want is somebody to call in on Ma so I can work a full week at work and not get stressed out of my brain worrying something might happen to her when the delirium strikes and I’m not there. Is that too much to ask?
aged carer experience 
I hear you Jenny – the battle against the bureaucracy can arguably be as tough as the carer’s battle. In my experience I fought furiously for the support Claire needed. And even though I wasn’t actually living with her 24/7/365 (as you are), I was there every day (which wasn’t always easy when you have a family waiting for you at home and a husband who wasn’t well himself). As a full-time teacher, there was no way I could ever work from home, nor could I leave my class in the middle of the day; so in the last 2 years of Claire’s life I used up a great deal of my accumulated sick leave and almost all my Long Service Leave. School holidays were less about social opportunities for me, and more about how many of Claire’s specialist appointments we could fit in, while I was available. There were many nights where I stayed over – for Claire’s sake as well as for my own piece of mind. And although my family NEVER objected and always gave me their 100% support – this wasn’t always the best choice for them or me. When I had exhausted all other avenues we went with a nursing home – as there was no other choice. But this was short-lived. Claire’s body needed much more support than her mind. She was very comfortable and very well cared for in the nursing home, but her mind wasn’t sick and she was miserable there. So I bought her back home. Luckily I was approved 9 weeks leave without pay (lucky for Claire and I – not so lucky for the mortgage!). This meant that I was able to be with her for those last few weeks – and for that I am grateful.
Unfortunately Jen, the institutions and the agencies will never be able to care for, tend to, clean up after, medicate, feed, bathe, dress or nurture our loved ones, to our satisfaction. The level of paperwork required for each part of the process is overwhelming. Their incapacity to respond in a timely manner is extremely frustrating. They have no personal stake in this matter.
As I re-read and edit this Jen, it occurs to me that my comments may not really have been that helpful and I apologise if they have added to the helplessness you are already experiencing.
So in spite of the inadequacies of the bureaucracy you continue to deal with – I offer you this mantra, that helped me:
This is not a perfect situation but……
Every day,
I am making my mother happy
I am making her life better
I am doing the best I can.
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Thanks Shayne, I worry more about the others out there that don’t have a voice. I may not have the time or the know how, but I will try to make a difference.
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