On Day 6 of Dementia Awareness Month (World Alzheimer's Month), we share a daughters heartwrenching story of her mother. This year, we decided as part of the #Hello daily series of blogs to try and more fully represent people living with dementia, but also to share some stories from family members as well.
Today, for the first of our carer stories, we share that of a daughter living in Singapore, who has been fighting for the rights of her mother who lives in a residential aged care facility (nursing home) in Western Australia. Ironically, this story also highlights the denial of many human rights, and abuses of an elderly mother in Western Australia, part of a country where there is a currently Royal Commission into Quality and Safety into Aged Care! Thank you Ting Fei for sharing your mothers story.
Hello, I am Ting Fei. I am my mother’s voice for her dignity, personhood and justice. My mother has numerous medical issues, and is also diagnosed with dementia (but she suffers from neglect and abuse). She now lies immobile, helpless, with severe muscle contractures, in an aged care facility in Perth, WA, Australia.
My mother is a 90 year old Chinese lady, widowed in 2012. In July 2016 she walked (with a frame), fairly independent and able to perform basic tasks of daily living, into this nursing home. But, in less than two years, she is reduced to total dependency on full support for her daily living in a wheelchair. How did all these happen in a place her guardians (EPGs) boasted as a “5-star hotel resort style” aged care facility? What has gone wrong?
Here are some of the grotesque facts behind the scene at this river-front “resort”:
Her sons first denied the diagnosis of cognitive impairment and promptly brought her to change her will. They took control of her finances and issued a debit card in her name. Within a year, my mother suffered two falls in Perth. The second one was what prompted the sons to place her in this “resort”.
There was a history of “mild” stroke and delirium before the second fall but the medical records on this mysteriously disappeared. There was a warning about risks of falls but this was never heeded. Once she was in this “resort” her sons, who also applied to be her guardians, left almost all care to the general practitioner (GP) and care-givers at the home.
The GP has this strange conviction that all declines in general health, cognition, mobility, ability to feed an swallow, loss of muscle mass etc are part of the natural process of ageing. Hence no further management is necessary unless for acute conditions and emergencies. He does not believe that a geriatrician can better manage my mother in her state of dementia and failing health. So my mother was never prescribed any form of medication for her dementia; no post-stroke rehabilitation and no systematic follow up for her failing health.
But this GP does not hesitate to prescribe heavy doses of Panadol to my mother. He later added Endone (an opioid drug) to my mother, for her painful muscle contractures, with no adherence to safety protocols or monitoring of side effects over several months.
The care coordinator at the home who professes to be a trained sports physiologist believes that physiotherapy is harmful for my mother. Hence no active or passive physiotherapy was prescribed for her.
Under such care, my mother rapidly deteriorated in her mental, physical, and nutritional state; from being mobile to full dependency on a wheelchair, in less than two years after admission to this home.
There were a series of unexplained and poorly documented falls resulting in bruises and injuries, including one with frontal impact to her right eye ball. She suffered pressure sores with one deep chronic sore on her left ankle that only healed after more than one year. She suffered recurrent skin blisters and bruises over her body and limbs and also recurrent urinary tract infections. Her puffy face from over-dose of steroids was bragged as a sign of good nutrition with weight increase. Many more healthcare issues occurred that are too lengthy to describe.
What dignity is there when she is found soaked with urine dripping from her wheelchair, being undressed by two African men, with food left for hours in the mouth…..?
What person-centered care is there when she is isolated in a place where she had language limitations and where she does not get her familiar Chinese food?
What quality of life is there when she only gets a wheelchair/bed to sleep on, a roof over her head and three meals that she hardly can eat?
In three years I exhausted almost all avenues of help that I can ever think of in WA, a state that has no law against elder abuse. Where there is no law there is no prosecution for offenses and no protection.
My pleas for better quality of care and protection against abuse fell on deaf ears. Despite all the evidences available, no one was interested to know. The State Administrative Tribunal and the Supreme Court both concluded that my mother is happy and wishes to stay at this home; that her guardians and doctor have always looked after her best interest.
WHO defines Elder Abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”.
In the hands of people my mother loves and trusts, these are the tragic experiences she silently suffers ……. “a scandal beyond belief” indeed.
Ho Ting Feo © 2019
Footnote: Many public self advocates are regularly accused of not having dementia, or are chastised for 'grossly misrepresenting' dementia. Most are, however, well aware of what is ahead of them, which could be the same as it is for Ting Fei's mother.