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Royal Commissioners moved by carer’s account


Aged Care Royal Commissioner Lynelle Briggs has praised the “extraordinary” resilience of a woman who gave a heartbreaking account of her desperate attempt to care for her husband after his diagnosis with dementia.

Joint commissioners of the aged care royal commission Richard Tracey and Lynelle Briggs

Victorian woman Rosemary Jean Cameron met her future husband Don at the age of 12 and the “inseparable” couple later shared many years of happy marriage, as well as children and grandchildren.

Ms Cameron first noticed something amiss with Don, a mechanical and structural engineer with a zest for life and a love of history and dancing, in 2006, when her usually sharp-witted husband began having trouble with decision making.

It wasn’t until seven years later that he was diagnosed with dementia with Lewy bodies, a form of dementia associated with hallucinations, paranoia, aggression, anxiety and incompatibility with certain medications.

Ms Cameron retired from her work and was determined to care for Don even as his behaviour became more and more challenging.

He had become completely dependent on her and often became agitated and convinced she was an “enemy” trying to murder his wife.

She was soon forced to lock the doors to prevent Don running away and at times he became violent, throwing her against walls and attempting to strangle her.

In 2013 Don was assessed by an ACTAT team and approved for a high level home care package. Two years later Ms Cameron was still waiting for the package to be assigned.

Isolated and exhausted

Increasingly exhausted, isolated and desperate, Ms Cameron applied for respite care in 2014. But after four months on a waiting list the facility called to say they were unable to deal with his behaviour, and she brought him back home.

The months and years that followed saw Don shuffled around between the aged care system, the health system and the mental health system, sometimes treated “like he had leprosy”.

Ms Cameron described his short stay at a mental health facility, where she found him knocked out, unshaven, smelly, incoherent and heavily sedated, as “horrific”. One day she found him face down on the floor, so heavily sedated he’d fallen out of his chair.

Another attempt at respite was followed by another call from a nurse who said Don was “totally out of control” and that she would have to pick him up or they would call the police.

When Ms Cameron arrived she found him dripping with blood from a gash in his hand and discovered he had worked himself up after being locked in his room all night.

Taking Don back home from yet another respite stay some weeks later, Ms Cameron hit her lowest point.

“I just remember feeling so extremely sad for to Don to be rejected when he needed help the most,” she said.

“I hopped into the car and I thought I can’t rely on anybody. I was so exhausted and I thought I’m failing him as well. I cried all the way home silently so Don couldn’t see and I just thought maybe I should end it for both of us.”

But she was able to “slap myself around the face” and pick herself up and get back into her carer’s role.

She secured some home assistance from a companion who spent time with Don, but that was later withdrawn because he was deemed unsafe for the worker.

‘I wasn’t going to let it defeat me’

The final straw came in 2015 after Don was discharged from yet another failed respite attempt. He came home extremely agitated. He began climbing furniture, shredding things and attacking Ms Cameron and their daughter, who was forced to restrain him and call triple-zero.

After another bout of hospitalisation and another stint in a mental health facility, in April 2016 Don was transferred to a specialised dementia facility where he remains today. Ms Cameron says his medication has been adjusted and his behaviour has become more peaceful, and she continues to see him every second day.

“I wasn’t going to let it defeat me, and for the person you love, you just don’t give up,” she told the commission. “You think that tomorrow might be better and you just keep going.”

Ms Briggs described Ms Cameron’s story as incredibly distressing.

“The resilience you must have required within yourself … is extraordinary,” she said.

Commissioner Richard Tracey thanked Ms Cameron for sharing her “long and difficulty and selfless journey”.

“It’s so important that we understand the difficulties that are being faced by families on a daily basis and you have certainly provided us with a very good example of how the system can fail people,” he said.

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8 Responses to Royal Commissioners moved by carer’s account

  1. Kerry Walker July 31, 2019 at 9:43 am #

    What a horrific reflection of a community that values people only when they are not problematic. The distress and isolation that Rosemary clearly experienced in trying to support and care for her husband is palpable.
    This in one story amongst many similar versions that we have not yet heard.
    Australia’s aged care system is a failure. Our culture only cares for people who can contribute.
    For those who no longer have a voice, those who’s last years are spent isolated in a room with a bed and a cupboard, their days punctuated with trips to the dining room to eat substandard meals and minimal or absent medical care is less than what we provide to those in the prison system.
    We can ignore it now at our own peril because if we don’t take action we could very well be where they are now.

  2. Susan Watson July 31, 2019 at 6:40 pm #

    Very difficult situation, poor lady, Lewy body dementia is truly nasty, I have cared for many calm collected people who turn into highly aggressive and difficult to reason with people with this type of dementia. Very difficult to manage in nursing homes as the risk to staff and residents is massive. Many nursing homes will just not admit them, or will give it a go on respite and immediately send them home if there is any behavioural issues. The risk of litigation, workcover claims from staff and complaints from families of other residents is just too great for most providers. If you are flagged to the Quality Agency by another family for having someone like this in your nursing home that is a risk to their loved one, then you risk possible consequences, you can end up bogged down in complaints management or a visit with targeted non compliance. Not worth it! I feel for these carers.

  3. Tony Schumacher-Jones August 1, 2019 at 11:58 am #

    I agree with Kerry Walker (above) who writes that “Australia’s aged care system is a failure”. I guess my question would be, why has it been a failure for so long? Another way of putting it might be, who is responsible for this failure?

    What gets me is that how have successive governments escaped the responsibility for the state of residential aged care? How have successive ministers of ageing and departments of health and ageing let this situation continue? I can’t see how they are not held to account.

  4. Ted Wards August 1, 2019 at 12:41 pm #

    Was at the national elder abuse conference last week in Brisbane. Several of the speakers in one of the panels were not hopeful at all that anything will change because of the RC. The Government are so good at their rhetoric and theories and placing incredible burdens on aged care workers who are basically not trained to deal with dementia. Did you know its not mandatory for aged care workers to have dementia training? Imagine that you put your loved one in a facility and the facility knows the person has dementia and place them in workers who are not trained to work with dementia, can barely speak English or understand what it is they are being told and then wonder why things go wrong?
    Nursing homes are not there to provide high end medical treatment. They can give medication and if there is a rn they can do some basic treatments, but if a resident becomes ill they are transferred to hospital. I recently lost my Dad due to the neglect of both the residential care facility and the hospital system. Every time he was admitted they would say send him back to the facility, they can treat him there. In the end he was so ill, the last time they admitted him to emergency my sister became very demanding and they finally listen to her and looked at what was going on. Basically his system had turned to soup. He died within 24 hours of being admitted. Yes I made a complaint and spoke to the commissioner herself at the conference and she was aware of my complaint. In reality that residential care facility is still operating and still in the same manner. I think my Dad is a lot better off now, wherever he is!

  5. Alan August 2, 2019 at 9:23 am #

    To love one another is a huge commitment and should never be taken lightly. Thanks to all who care for another lovingly. There are so many in our community willing to do this and it is up to all of us to value these wonderful people who show us how to to do it! Thank you.

  6. Maria Nasi August 2, 2019 at 3:28 pm #

    As a retired aged care welfare worker, l am disgusted that good people sacrifice their employment and quality of life to care for a loved one at home suffering from dementia, to find that once they can no longer continue to safely provide care at home and their loved one is admitted to residential care, that the carer who has been out of the employment scene sometimes for a number of years, is suddenly trying to live on Newstart – to pay for house rates, insurances, car reg petrol, etc etc. Being in regional country Victoria, job opportunties for these folk in their mid-late fifties is negligible. And yet our esteemed political leaders call them ‘dole bludgers’ and reduce them to below poverty living. What kind of country are we? Bring back Ben Chiefly who actually cared about the country and its people.

  7. Tony Schumacher-Jones August 3, 2019 at 2:16 pm #

    Good comment Ted Ward. Will the RC change anything?

    Quick answer; no it wont. If you go back to the early 1980s when the McLeay report into aged care was released – from that point on we have had over a dozen reports, inquiries, reviews into care and nothing changed. The best predictor of future behaviour (of institutions and individuals) is past behaviour. Why on earth do people think that because you have another inquiry and call it a “Royal Commission”, that anything will change is beyond me.

  8. Janine August 13, 2019 at 10:06 am #

    Yep this story is one in many not rare at all, would be nice if all of us were heard when we needed it from the start!!!!
    try NINETEEN YEARS (19) being sole carer to a husband who suffered a massive brain tumour left with multipule disabilities, a son who suffered a fear of dying, severe panick attacks plus depression not only due to his dad but because he has also had to watch his mother who has Lupus SLE and Raynalds disease struggle every single day living on or below the poverty line while there was ZERO HELP from any service providers or brain injury care, no occupational therapists or ongoing medical or home help there is so much more i could tell about the nothing we’ve had due to the constant unanswered calls and requests & yes you should have this and that help but nope!!! you give up on at 30 years old he was not classed as aged or young a grey area that nobody ever wanted to deal with….now before we even got started some NDIS idiot went to my house without my knowledge, consent or most importantly ANY INPUT and i get this first plan that has literally NOTHING HE DESPERATELY NEEDS included!!!! for the past year i have been buried in paperwork, chasing my tail from one idiot to the next and reviews that i was told did not exist, the constant ringing people back for answers, the extra medical reports and reviews the list is endless and we are still no where we really need to be!!!! the mental, emotional and physical toll it has taken of NINETEEN YEARS WITH NO ONGOING HELP IR SUPPORT FOR ANY OF US IS NOT ACCEPTABLE especially when his family abandoned him also becuase he didn’t come with an instruction book, to selfish and self centred to try!!

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