Saturday night was a tiring night for me. It was the first night my niece, Ah Hong, went away on a holiday again. it was also the first night of at least five tiring nights I have to endure before my niece returns home. Saturday night was also the night my mother – a dementia patient – refused to sleep and kept getting out of bed every few minutes.
When my niece was small, my mother looked after her and they slept together. They have been sleeping together ever since she was four months old. My niece is 21 years now and technically an adult.
If Ah Hong is in Kuching, my mother will wait for her to come home – from work or from play – before she goes to sleep. If Ah Hong is not in Kuching, my mother will keep getting out of bed every few minutes to ask “Where is Ah Hong?”
She will ask the same question again and again throughout the day.
A few of my friends also have dementia patients who are either their own parents, mothers-in-law or fathers-in-law.
One of my former classmates’ mother is also a dementia patient; she does not talk much or answer back. She just sits down quietly in the chair her daughter allocates her. If my friend asks her to eat the food in front of her, the old lady will do so, abeit slowly.
My mother, on the other hand, is talkative and likes to answer us back. She likes to curse us and will walk up and down the house all day long. She does not know when to bathe.
In the bathroom, she has to be supervised. Otherwise, she will not use any shampoo or soap to wash her body or hair. If she is not supervised, she will wear all the dirty clothes again. She also does not recognise her own clothes and sometimes, she also does not recognise me.
My mother also does not nap in the day and cannot remember whether she has eaten or not. After lunch in a coffeeshop, one of the things she likes to do is to look for the rice cooker because she wants to cook rice.
At first sight, my mother,who is almost 80, looks young for her age and looks strong physically. Initially, many of our neighbours were unaware she was a dementia patient. When she told them she had not eaten whole day long, some of them believed her.
Just the other day, while I was having lunch with my mother at a coffeeshop in our housing estate, a woman I did not know shared with me the stress of looking after dementia patients The conversation began after she asked me how old my mother was.
The stranger told me she looked after her mother-in-law, a dementia patient, for many years. The old lady, who lived up to nearly 90 years old but went blind before that, liked to curse and take long baths.
The stranger, who was working then, said she was eventually forced to send her mother-in-law to a nursing home. The old lady has now passed on.
The stranger advised me to send my mother to a nursing home. “You are working and it is stressful to look after a dementia patient if you are working. Besides, at the nursing home, your mother will have many friends to talk to and will not be lonely,” she pointed out.
She also asked me why I was looking after my mother and not my other siblings, especially the sons in the family.I told her I was the second child in a family of four daughters and two sons. I have an elder sister, two younger brothers and sisters. One of my brothers had also passed on. I told the stranger so far, no one has volunteered to take over the task of looking after my mother yet.
My mother sees a doctor who prescribes just one type of pills for dementia at the Kota Samarahan Heart Hospital every three months. She has hypertension and diabetes and is prescribed medicines by doctors at the Tanah Puteh Polyclinic for the ailments.
When I accompanied my mother for her first appointment at the Kota Samarahan Heart Hospital, the doctor suggested I quit my job to look after her. I was astonished at his suggestion. I wanted to ask him “Who will pay for my house mortgage, car fuel, life insurance, etc?” but refrained from doing so out of courtesy and respect.
Malaysia is expected to reach an ageing population status by 2030. In an ageing society, there is bound to have age-related problems like dementia.
Rich people can prepare in advance for their own care – like where they will live in their old age and who will look after them – before they become senile from dementia. But what about the poor people? Poor people who are dementia patients will be burdens to their children, especially those who may be forced to look after them.
Perhaps it is time now for the government to hold more awareness programmes on dementia for the public and look into the setting up of more affordable housing homes, especially for the lower income groups.Dementia does not discriminate between the rich and poor: it affects people of all races.
Many children, I think, will only send their parents to nursing homes as a last resort.
But if caring for their parents means going to the office late every day and receiving show cause letters from the bosses, they have no other choice but to do so. If they lose their jobs, who will look after them and care for them?
Children do not ask to be born. Parents should not demand that their children look after them in their old age. Before they grow old and suffer from dementia, parents should save sufficient money to ensure they are properly taken care of in their golden age.
