Feb 13, 2019

“From the depths of despair there is hope”: A family’s journey through aged care


One of our readers reached out to us recently when we published an article about the Montessori method.

She wanted to let us know that learning about the Montessori philosophy helped give her the skills and confidence to let her mother return home after suffering distressing experiences in a residential aged care facility.

She wanted to let readers know that “even from the depths of despair, there is hope”, and the importance of being an advocate for your loved one

A downward spiral

Alarm bells rang for Rebecca* only days after she put her mother, Sue*, into a nursing home.

Rebecca noticed changes in Sue’s personality from the first week in the nursing home. On questioning staff, they were told all residents ‘go downhill’ when entering care.

Little did Rebecca know at the time, but staff had started administering Sue with antipsychotic medication from Sue’s second day in care. Rebecca with hindsight regrets not asking to read her medication list.

Within two weeks Sue was sent to hospital due to an overdose of an unconsented antipsychotic medication.

The following week Sue was sent back to the nursing home and the GP charted a daily dose of another type of another antipsychotic.

Due to multiple medication errors within days of her return to the nursing home, Sue experienced adverse reactions.

When Sue’s ‘adverse behaviours’ continued, the dose of the antipsychotic medication was doubled, and then doubled again within one week.

Sue was, according to Rebecca, “a mess”.

Complaints channels were unsatisfactory

Rebecca made a complaint to the nursing home’s management about Sue’s care, and they apologised and developed a new management plan for Sue.

But Rebecca said the response to a complaint to the Aged Care Complaints Commissioner (now part of the Aged Care Quality and Safety Commission) was unsatisfactory.

A new approach

Time went on, and Sue remained on antipsychotic medication, and though she was better, Rebecca observed that she was still not herself. She returned to hospital including going back to the mental health hospital a second time.

Rebecca was still unhappy with the way her mother was being cared for at the nursing home.

“They were just drugging her into a manageable state,” she told HelloCare.

Rebecca eventually attended one of Dementia Australia’s Carer Education days, which explained how to keep people living with dementia “feeling good”. It explained how activities such as gardening, listening to music and exercise could improve the quality of life for people living with dementia.

That got Rebecca thinking.

She began to take Sue out of the nursing home for short visits to the local cafe, or to the beach. While they were out, Sue almost returned to her old self, Rebecca said.

They both always enjoyed these outings, but would return to the nursing home afterwards.

Rebecca then began to take Sue home for the day, and overnight on the weekend. During the week, Rebecca would take Sue out at 11 and bring her back at 5. Then her brother would come and help give her dinner at 6.

“We got her out of there as much as we could,” said Rebecca.

Rebecca decided to bring her mother home for a month. She was able to quickly re-engage her home care package which helped enormously.

Then they did another month at home.

Making the decision to move home

Eventually the decision was made for Sue to return home permanently and live in her own apartment, which is just around the corner from Rebecca.

Rebecca and her brother weaned Sue off antipsychotics within two months of being home.

She says the only reason her mother is still alive is that she was very fit and only 72 years old when she went into the nursing home.

“It is a miracle she survived,” Rebecca said.

Rebecca continues to read about ways she can support her mother’s quality of life.

She has an Instagram account with pictures of her mother, where she hopes to show others how they can improve the quality of life for those living with dementia. Unfortunately, in order to protect Rebecca’s anonymity, we can’t provide the address, but the photos of her mother show her smiling, engaged in activities such as gardening and listening to music, and looking relaxed and happy.

Rebecca’s happy with how her mother is now, and believes the Montessori philosophy has helped her to help Sue.

“If you do all the things that make people engaged and happy, it works ” she said.

Rebecca is grateful to Alzheimer’s Australia (now Dementia Australia), the Montessori Method, DBMAS, and also Leah Bisiani for promoting the concept of seeing the person, not the disease.

* Names have been changed.

Image: Used to illustrate this article does not reflect actual people or events. Image: iStock.

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