Tag Archives: Alzheimer’s Disease

Care, incorporated

Waiting for a real helping hand (Photo: Chalmers Butterfield).
WAITING & WATCHING for a real helping hand (Photo: Chalmers Butterfield).

A Writer’s next day job.

BY the time I felt ready to work again after the death of my partner, I was drawn to an industry which seemed at first glance to be all about offering an old-fashioned helping hand. While I took time away from writing, acting and designing, I accepted a job as a carer for older people living in their homes.

Across four years, what I discovered was life enlarging and shocking, and, of course, I eventually wrote about it. This article was published by Australian Ageing Agenda (Intermedia) In their March-April 2010 edition.

Reflections of a carer

Former carer, Michael Burge, highlights the unintended consequences of government-funded community aged care.

Dan* lives alone in a cottage with a stunning garden. To his neighbours he’s like thousands of elderly men, gardening and feeding the birds. But Dan lives with a secret – he’s in the advanced stages of Alzheimer’s disease. That kind young man who used to call in and see him once a day was not his son, but me, when I worked for a church-owned community aged care organisation.

It took a few days to realise Dan has dementia but I guessed after we had the same conversation three times in a row. When I visited Dan, I would make his lunch and prompt him to dress. Apart from weekend visits from his retired daughter, who’d ask me for care tips, Dan was on his own.

I also cleaned for Ken and Betty, a war veteran and his wife. Ken had problems walking and was permanently catheterised, not that you would have known. As Betty was worried about losing him to a nursing home, she tried to hide all outward signs of his conditions from me.

Cameron lived with his son. Fond of telling me how many properties he owned, he bragged about securing maximum care at budget prices, since his son worked in the health system. Despite family support and excellent health, Cameron felt totally entitled.

Beryl had a degenerative joint condition, yet she handled the stairs on our weekly shopping trips with a mountain climber’s courage. I got used to the frowns from passers-by who saw a carer forcing her, rather than a woman choosing to participate in her own rehabilitation.

Klaus lived in squalor on booze and chocolate while his meals-on-wheels dinners went off in the hallway. He refused to get out of bed when I said I wasn’t permitted to take him to the bottle shop. This got him off out books and back into ‘no man’s land’.

WAITING AND WATCHING (Photo: Ahmet Demirel).
WAITING & WATCHING for solutions to home care (Photo: Ahmet Demirel).

Exposing the gaps

Carers are not there to judge, we’re there to do what our clients cannot. Trained in the practice of ‘person centred care’, we won’t do up a client’s buttons if they can still do it for themselves. Interfering might lead to ‘learned helplessness’.

Filled with such euphemisms for an old-fashioned helping hand, home care is touted as the ideal in aged care. Millions of taxpayer and private sector dollars are pumped into this growth industry every year, and the demand is only growing.

Expectations of home care are very high. It looks good on paper – after all, it’s about nurturing people facing one of life’s most challenging periods. But after working in home care for four years, I came to realise it’s just a safety net, and it’s full of holes.

So many older people are estranged from their families, or have outlived them and most of their friends. If you believed everything older Australians say about their baby-boomer children, you’d end up confused over which generation was the more demanding, but it’s clear someone is capitalising on this lack of intergenerational care within families.

Carers are deemed competent in infection control, manual handling and occupational health and safety. After warnings about old vacuum cleaners and hand washing, they do a couple of buddy shifts with experienced carers, then work relatively unsupervised in the field. Nurses are dubious of carer’s skills, yet they are turning away from aged care citing low pay and demanding conditions.

Department of Veteran’s Affairs (DVA) clients get the most support, but they’re coded according to where they (or their spouses) served, in addition to having their needs assessed. This sometimes leaves the impression that some DVA clients are not getting enough care, whereas others seem to receive more than they need.

Experiencing the consequences

There can be few things more important than the care of people, but governments have a habit of throwing money at home care and regulating the system from a distance.

Operating from a charitable, benevolent or customer service standpoint, home care organisations fill the gap by providing broad safety nets in highly populated areas. These nets are stretched between middle and senior management, padded with charitable status tax-breaks and strung out by government funding.

Clients are netted at very vulnerable times. After a traumatic experience, such as a hospital stay because of a broken limb, they are contracted into the system. Many home care organisations eventually stream clients into their own residential care facilities.

I was recruited into a home care organisation at a vulnerable time in my life after the sudden death of my partner. Return-to-work mums were my most common colleagues. We were often full of doubt about our abilities and found it hard to get the promised hours out of our supervisors. They usually gave us just enough to keep us off the unemployment statistics but not enough to pay all our expenses.

After a promotion into the training department, I could see how the supervisor’s hands were tied by a system with a high number of needy, casual staff delivering minimal care hours to the maximum number of clients. It was also obvious that satisfying government regulation drew heavily on available funds.

Carers were commonly sent to new clients without knowing they had dementia and without the appropriate training to provide effective care. Clients were routinely kept in the dark about which day and time their carers were coming, unable to contact their service coordinator. The time supervisors spent with clients was regularly reduced by management, allowing important care needs to be overlooked.

Whatever reasons management had for this, the result always pushed the clients further from the centre of the care process, and contributed to an extremely high staff turnover. The hypocrisy of my employer not sharing its broad tax relief with employees was startling and I too eventually resigned.

NOT WAITING “Old age ain’t no place for sissies” said Bette Davis (1908-1989) (Photo: Alan Light).

An alternative approach

If the choice was up to me, I’d provide incentives for families to care for their own relatives, and pay Dan’s daughter for the one hour a day he needs. I’d cease planning which care facility I wanted to stream Ken into and I’d support Betty to care for him. I’d means test the system to filter out Cameron. I’d allow Klaus’s carer to take him to the bottle shop. I’d clarify the system which seems to define care needs based on service history for DVA clients. I’d aim for changes to free up resources for people who have limited funds and no family, like Beryl. I’d also make caring a real career option for employees.

Despite the fact that I am a fully trained and there are a plethora of aged care positions in the paper, I’ve chosen to work in a different industry since I left my previous employer. Aged care doesn’t offer an unconditional helping hand anymore. If it could, then the safety net might truly catch people.

*All names have been changed.

© Michael Burge, all rights reserved.

This article appears in Michael’s eBook Creating Waves: Critical takes on culture and politics.