As we continue our series of daily activities and blogs for World Alzheimer’s Month it is important to remember that dementia effects many more people than those diagnosed, and that the financial and emotonal cost to family members and care partners is high. The World Health Organisation says:
- Currently more than 55 million people live with dementia worldwide, and there are nearly 10 million new cases every year.
- Dementia is currently the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people globally.
- Dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their carers, families and society at large.
In 2018, ADI reported an estimate that the annual global number of informal care hours provided to people with dementia living at home was about 82 billion hours in 2015, equating to 2,089 hours per year or 6 hours per day. This is the equivalent of more than 40 million full time workers in 2015, a figure that will increase to 65 million full time workers by 2030.
Hence at DAI, we believe it is important to share some of the personal stories of family members and care partners. They too need a voice, and today, we share part 2 of the lived experience of Dr Ting Fei Ho, from Singapore.
Hello my name is Ting Fei – part 2
Hello, I am Ting Fei. In 2019, I first shared about my mother who was placed in a residential aged care facility in Western Australia (WA) by her three younger children (two sons and a daughter). They were her legal guardians yet did not want the responsibility of caring for her as soon as they realized that she had dementia, despite their denial of the fact.
At the same time, my mother was on the road to recovery from her hip replacement surgery but, unfortunately, suffered a “mild” stroke while staying with her youngest son in WA.
Not long after my sharing in the September 2019 “#Hello, my name is” series, my mother passed away on 20 September 2019.
There will be no fair and just closure to my mother’s experience if I do not complete the account of my mother’s brave but futile fight to live her life with dignity and deserved quality.
Here in part two, I revisit and share the heart-breaking events of my mother’s last days in the aged care facility. Hopefully this will raise public awareness of the many ways by which a helpless elderly with impaired cognition can suffer abuse.
To recapitulate, my mother was placed in the aged care facility in mid 2016.
On admission, she was able to walk with a frame and able to independently perform basic tasks of daily living.
In less than two years, she suffered a few falls, developed deep pressure sores that did not heal for months; ended up with total immobility and fully dependent on support for her daily living. All these happened due to gross neglect and inappropriate care.
From 2016 to 2019, I travelled regularly from Singapore to visit and care for her. At the same time, I diligently strived to obtain legal approval to bring her back to Singapore where I can provide better care for her in my own home. Singapore was a second home to my mother who lived with me for several months a year before she was placed in the aged care facility.
Fast forward to September 2019, about 10 days before my mother’s death, I was informed through a brief email from her guardian that she was admitted to hospital for inability to eat or swallow. I made urgent arrangements to visit my mother to find out more about her condition.
Below is a list of horrific events during the 10 days before my mother’s death:
- When I arrived I was shocked to find my mother hardly able to respond or communicate. She was staring up at the ceiling with glazed eyes, had very dry mouth and tongue, and she was struggling to breathe. The same general practitioner (GP) who looked after her at the aged care facility had ordered NIL by mouth a few days ago after her discharge from the hospital. Hence she was not given any fluid or nutrition for several days before my arrival. Basically, my mother was being left in bed to wait for death.
- I used a wet sponge to wet my mother’s mouth in order for her to feel more comfortable. She clung onto the sponge, thirstily sucking the fluid. I then asked the GP whether I was allowed to give my mother some fluid this way. He said that she must first be assessed by a speech therapist. So that evening my mother was sent to the hospital again. After waiting all night on a trolley at ER, I was told that nothing more could be done and it was best to send her to a hospice care.
- The same advice for hospice care was earlier prescribed by the doctor at the hospital during my mother’s first admission. But this advice was ignored and I was not aware of the hospital doctor’s earlier advice. I tried my best to contact various hospice facilities but they were all full except for the Bethesda Hospital Hospice Care. They promised to send someone down in the next morning to assess my mother. This hospice team and their efficient professionalism was the only ray of sunshine for my mother during the bleak last days of her misery.
- When I saw my mother in so much distress, I asked whether she could be given some nasal oxygen to ease her laborious breathing. The aged care manager came and, without even stepping into the room to see my mother, stood outside the door and told me that my mother was not in distress hence nasal oxygen was not necessary. My heart sank at such an uncaring and heartless attitude.
- Thankfully the hospice team did not take too long to arrive. They skillfully assessed my mother and promptly ordered nasal oxygen for her as well as a low dose medication to ease her breathing. They also advised me that my mother was too ill to be able to endure any transfer to the hospice care hospital. So under the supervision of the hospice team, my mother was given the prescribed oxygen and medication. Soon she was noticeably more comfortable and her breathing was quieter and relaxed.
- By then I had also arranged for 24-hour private nursing care for my mother. The aged care staff tried to deter me and told me to get permission from the guardians. But I told them that it was a crisis and, in the absence of the guardians, I would decide and pay for all nursing and medical fees for my mother’s hospice care.
- During these last days, none of the guardians were attending to my mother. They also did not follow up on the initial advice by hospital doctors to provide hospice care for my mother.
- When all necessary care was finally arranged, I instructed the private nurse to monitor and record the vital signs of my mother and to regularly hold her hand, gently stroke it and talk to her. I observed that such physical contact and gentle speech were very reassuring and comforting for my mother.
When I bade farewell to my mother I knew I would never see her again. Indeed, within 24 hours after I left my mother, she gave up her spirit to the Lord and returned to her eternal home to be united with my father.
The sons, for whom she kept her eyes opened, waiting to see them for the last time, never appeared.
During my mother’s final days the abuse continued. She was deliberately denied hospice care and intentionally left to die a tormented death with starvation and dehydration. Thankfully, my intervention in bringing hospice care and personal attention to her brought some relief, calm and peace to her soul.
My mother’s misery lays bare two important lessons for us:
- We must reinforce the calls to protect the vulnerable, guard their dignity and provide legal recourse to better defend their rights.
- We should never assume that legal guardians and trained aged care personnel will always act in the best interest of the elderly person whom they are legally entrusted to care and protect.
I believe my mother’s suffering will not be in vain. Justice will and must prevail.