“STOP spitting; swallow, Mum!” She ignores me and keeps trying to push the food to the front of her mouth. I stare at her sternly and warn her not to spit again.
And so, the daily struggle to make my mother eat her dinner continues. This particular evening, I stepped in to help with the feeding because Mum was being particularly difficult and Mary, her Filipino caregiver, was getting quite stressed.
My mother’s spitting started several weeks ago. Feeding her dinner used to be an easy and straightforward task that took at most half an hour. Now it has become a battle of nerves that can take close to two hours.
This development is another unhappy “milestone” in her decline which can be traced to two years ago, as I shared in this column (“My mother, my child, my duty”, Oct 7, 2020; The Star; online at bit.ly/star_mother).
We were in the grips of Covid-19 and my main priority was to keep my mother safe from the coronavirus at her age then – 86 – because with all her illnesses of obesity, high blood pressure and diabetes, she was the most vulnerable member of the family at risk of dying from the disease if she caught it.
To keep her safe, she got her vaccination and booster shots and is pretty much cocooned in her rooms. She only leaves the house for turns in the garden, neighbourhood walks in her wheelchair, and for hospital visits. She turned 88 in January and has remained free of Covid-19 so far.
But her body and mind continue to decline, despite our best efforts. Two years ago, she could still stand and walk short distances with a walking frame. Months of physiotherapy, which initially seemed to help, did not help her regain her muscle strength.
Instead, her desire and ability to walk diminished, but the risk of her falling increased because of her unsteadiness and dizzy spells. For her safety, she became wheelchair-bound.
Finally, in January this year, we stopped the visits by the physiotherapist. This was because a month earlier, I realised my maid Wiji and I could no longer manage my mother’s care. Just moving her 1 metre from the wheelchair to the bathing chair in the bathroom was a Herculean task.
Through an agency, we hired Mary to look after Mum full-time, from 9am to 9pm. That includes the task of massaging and exercising her.
Her mental state has also worsened. In 2020, while she would get confused and could not distinguish day from night, she could still argue with us over things like her meal-times and medications. She would fixate on petty matters like missing money, towels or spoons and make us search all the cupboards and drawers for them.
I actually miss that now because she has regressed to an infant-like state. She barely speaks as she struggles to find words and resorts to moaning, groaning and sometimes wailing. This is the most heartbreaking thing to see. Mum used to be chatty and opinionated. Now it’s like she is at sea and drifting further and further away.
As she detaches from reality, she shows little interest in anything. She no longer wants to do her puzzles or watch television because she cannot focus and drifts off to sleep after some minutes.
The next best thing we can do to create a more lively environment for her is to fill the stillness with music – a lot of Chinese opera, Cantonese and Mandarin classics, folk songs, themes from 1980s Hong Kong dramas she used to enjoy watching, and Frances Yip numbers.
Yet, she is not all gone as she surprises us every now and then with a spark of awareness that gets us all excited and hopeful. She will clearly say a word about something she wants or doesn’t like.
She may even sing a line or two from a song she recognises, but this is becoming increasingly rare. Or she responds when Mary uses picture flashcards to ask her to name the image or number
Sometimes, I show her old photographs of friends and family to try to jog her memory and recall experiences and stories from the past. She may not recall the names of her children but interestingly, the one person she can name every time is my late father who was the love of her life.
Mary, who has looked after several elderly charges before, says Mum is one of her easiest patients because she is undemanding and quiet most of the time. What stresses us all out most is her newfound habit of spitting out her dinner.
I am so saddened by this because Mum loved cooking and baking, an interest all her daughters share. She could taste a dish and work out the ingredients to replicate it.
To see how little interest she has in her food is truly painful. Breakfast and lunch are problem-free but it is dinner she often rejects. I am still experimenting and looking for new recipes and methods of cooking to try to whet her appetite. My last resort, after checking with her doctor, is to give her formulated meal replacements.
Every meal is followed by cleaning her mouth because one of my biggest concerns is her dental health. At 88, Mum is very fortunate to have only a few fillings, a couple of crowns and most of her teeth. Keeping them in a clean and good state is a “mission” because if there is a problem, it will be extremely difficult to take her to a dentist.
First is the transport – I would need to book a wheelchair-friendly van – and access to the dentist’s clinic. Once there, we would have to move her from wheelchair to dentist chair and, as all of us have experienced, raise her to a level where the head is lowered for the dentist to peer into the mouth. And Mum won’t be able to take that as she has blood pressure issues, nor keep her mouth open for the treatment.
When I last visited my dentist, I asked him whether he had colleagues who specialised in or could provide geriatric dental care; like being able to treat a patient sitting in a wheelchair. He said there was none.
Despite the difficulties, I know I am very lucky and grateful to be able to find such good care support from Wiji who has worked with me for 13 years, and now Mary.
I have friends in a similar situation of looking after aged parents and relatives and we share that often the most stressful and worrisome part for us is finding a good caregiver for them.
I have thought of finding a nursing home for Mum but that will only be an absolute last resort when I am no longer able to manage caring for her in my house
This is the inevitable goodbye we have to face with our aged, ailing parents. Yet, every time I think of sending her away, as I too am growing old and I do not have the physical strength to handle her, I feel wretched and guilty. And I feel like I am letting my dad down because that was his dearest wish for his children after he was gone: to care for Mum till her dying day.
The views expressed here are entirely the writer’s own.
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