This is a creative nonfictional account of just one of the thousands of calls that pass through the IDEAS Information Service each year. The subject granted permission for her personal story to be shared, however information that would identify the person has been removed.
At night with its sound of sheets rustling and bodily sighs, all under sparse lights and neon emergency signs wrapped up securely under the low throb of the air conditioning.
She knew it was not the right place for her. At nearly fifty, she was at least thirty years younger than those in need of comfort for the end stages of life.
She had been confined under a life sentence. This was the outcome after doctor's tests and eventually, admittance to a nursing home emerged as her only option for a safe and secure place to live. It had been her parent’s choice.
The diagnosis was more straightforward than being sure of the likely outcome of the condition. Alcohol-Related Brain Injury (ARBI) was a bold truth. Dementia was a shorter explanation, and her choices were limited with no family who could take the day to day care of her.
Her family had told her they could not look after her. Who knows what had happened before her family reaching this decision? She revealed her family was frustrated when she would leave the house and return with shopping items too extravagant for her budget.
Shops with their freedom to choose are a wonderland of colour and convenience. Shop attendants are strangers with a smile. They will say good morning and thank you. They may make no conversation at all but mostly everyone is always welcome. All it takes is money to bask in a small ray of humanity.
At the nursing home at night, the four dayshift nurses dropped to two staff to keep an eye on both of the long dim lit wings. As soon as the day shift left and it was quiet she made her way down the ward in the dark to the nurses’ phone. Getting out of the dementia ward at night was beyond her, but the phone was unattended and she had memorized a phone number.
This was how the nightly calls to ‘Diana’ began. Bit by bit she told a simple story whenever she rang:
A history noted with meticulous care explains why she asked for Diana. The calls started in 2015. The first time she got through Diana had taken the call. She continued to ask for Diana for the next several years. Her nursing home phone privileges were reduced to leaving long messages on the answering machine. Sometimes all she was able to remember was the phone number and Diana’s name.
Every morning the call centre staff would arrive for work at a small neatly arranged office, tucked away on the main street in a country town, and check the answering service. Those mornings where they found one of her long messages, sometimes bewildered, other times carefully worded, and the call centre staff would call to speak to her at the nursing home.
They’d document it all, including the nurses who said they were too busy during the day to get their night caller on the phone. The nurses would explain they didn’t have time to keep up with all the calls their youngest resident was making to all kinds of places far and wide.
To get around this, call centre letters arrived at the nursing home with advice for how to find her way out, and on her request fact sheets about dementia and Korsakaoffs. Frustration, poor concentration, confusion felt with all the things life can throw at a person are more acute with an ARBI. It can make you stumble and lose your way. Her determination didn’t waver.
On the inside, she couldn’t take a call on a cordless phone. On the inside, the customary response was she had been admitted with early onset dementia and it was for the best, but staff even while doing their best in a busy nursing home, their faces can lose their soft edges as they spit harsh words and their eyes lacerate the vulnerable. On a forgetful day, it becomes a pitiless world.
Her calls continued and her message was clear, ‘Please help me, I need to get out of here’. Some days were finer than others. She grasped the complexity of eligibility for government services, and who to call, and how to organise wads of paperwork proving this, that and the other.
Other days, she rang the call centre but didn’t know why Diana and Lauren were so important to her. On those days, the call centre staff member straightened her headset and returned to the beginning and explained it to her all over again.
So much information, trying to carry water with a hole in the bucket. Throughout it all she remained polite on the end of the line, listening carefully for clues to make her escape.
This went on for over two years. Connections were slowly made as the call centre responded to every message and every call, going through her options from top to bottom. Finally, she made her way through the labyrinth of government-funded services and she was appointed a case worker, someone who had the job of helping the young get out of old age nursing homes. Her Case Manager got a mobile phone and after that, she rang anytime, day and night.
By this time the Case Manager, backed up by the Public Guardian, was actively involved. The country town now fielded calls from not only a nursing home hundreds of miles away but from the case manager as well. She was building a new life beyond the room she shared with those who were in the final stages of theirs.
She knew what she wanted and continued to say it clearly. After nearly three years, the good news went around the information service. She had found her place. With the help of her case manager, her NDIS package had gotten her into a brand new unit, and it paid for what she needed – the help with cleaning and shopping and therapy – that gave her what she had asked for in her first call. She could wake when she wanted, sleep when it suited her. She had help to leave her home, she had people her own age to talk to. She could decide when she ate, and she could listen to music whenever she pleased.
She still calls. She asks for Diana or Lauren or Sue, and she is much happier now.
According to the Young People in Nursing Homes National Alliance, in 2010,
One of hundreds of people with disabilities under 50 forced to live in aged care. (Fred Kroh, The Summer Foundation).
The Summer Foundation aims is to resolve the issue of young people living in nursing homes.
Did you know it is cheaper to provide the services and supports that get a young person out of a nursing home and into independent living, than it is to tie up a bed desperately needed for aged care?
IDEAS is a fully independent service and provides callers with three different options, where possible, for every inquiry. Our staff are experts in providing complex and verified the information to our customers, and work hard to maintain our independence, accuracy, and our charter to empower people with a disability to make their own choices.
You can call IDEAS’ national Call Centre on 1800 029 904 from 8 am–8 pm Monday-Friday for disability information that is free, accurate and independent.
