Freed finally from dementia’s cruel grip

SHE’S dying. The words were said bluntly, matter-of-factly. I felt my heart tighten, but then I shook off the feeling of fear and dread because Mum has had so many close shaves, surely this was yet another.

But Nurse Mastura, who said those fearsome words to me on Thursday, was right. My mother’s time was finally up and she passed away on Saturday, Aug 2, at 9.50am. I was there holding her hand when she breathed her last.

She was 91, which meant she had almost a century of a lifetime, and that is pretty amazing. Indeed, for the most part, Mum lived a good life with Dad who spoiled her quite a bit.

After Dad died in 2016, it was clear she missed him terribly and her last seven years were hard. I realise now I actually documented her decline into advanced dementia in this column, beginning in 2019. That was when I described how my life had changed after retiring that year and having to look after Mum all by myself when my Indonesian maid went on a home visit for two months.

I talked about having to take her blood glucose and pressure readings, giving her insulin jabs, making her meals and bathing her – things that she had previously managed herself.

Just a year later, when Covid-19 hit us all hard, Mum’s decline worsened. She became quieter, slept a lot more, got confused over simple things like her meals, and she started to slur her words. She would fixate on small matters and get very agitated over them. She became physically weaker, too, and was so prone to falling, we had to confine her to a wheelchair.

I tried to stem the decline but to no avail. Two years later, in 2022, I wrote how she had become detached from reality. She had regressed to an infant-like state and kept spitting out her food.

It was heart-breaking to see my once chatty, opinionated mother reduced to barely speaking because she struggled to find the words. In place of speech, she resorted to moans and groans.

I described it like she was at sea and drifting further and further away. This was the “inevitable goodbye”, which was the title of the column.

Just 16 months later, I again wrote about Mum celebrating her 90th birthday in January 2024. Sadly, there wasn’t much to celebrate on her becoming a nonagenarian. By then, her mental state was so bad, she had stopped speaking completely and showed little emotion or reaction to anything or anyone. She had to be fed with food blended to puree consistency.

My mother had become my child. And like a child who liked sweet things, she would open her mouth for cakes, ice cream and soft cookies. But that did not prevent her from losing weight.

From a cuddly, plump grandmother with pink round cheeks, she would shrink to almost skin and bones by the time of her passing.

After she was discharged from hospital for pneumonia in February this year, her geriatrician, Dr Khor, warned my sisters and I that while Mum might have made it back home this time, she could come down with another infection at any time and we had to decide if we wanted to admit her again.

It was clear that there was hardly any quality of life left for Mum as dementia continued to ravage her mind and body. If we kept sending her to hospital to keep her alive, we would only be prolonging her suffering.

That was when Dr Khor referred Mum to Hospis Malaysia as an end-life patient. This was truly a godsend and that was how Dr Jonas and Nurse Mastura came into our lives like angels.

They checked on Mum regularly and gave us invaluable advice and counselling on how to care for her. Her biggest enemy was phlegm – thick, choking mucous that made swallowing and breathing difficult. That is yet another complication as dementia progresses.

I bought devices to loosen the phlegm and to suck it out. I rented an oxygen concentrator for times when her blood oxygen level dropped precariously. This rarely happened until late last month.

A month ago, she developed a lung infection. Mastura administered antibiotics and her visits increased to weekly. Even though the infection cleared, Mum was further weakened.

When the oximeter showed the oxygen saturation dipping into the 80s, we panicked even though the doctors and nurse kept advising us not to obsess over the numbers. The Monday before her passing, despite being on the oxygen concentrator, Mum’s level remained low.

After consulting the Hospis medical team, Mastura prepared morphine shots for Mum as she had started to make really loud and long groaning sounds.

But with her 13 years of experience in palliative and end-life care, Mastura had heard something before making that heart-stopping pronouncement: that Mum was dying and we needed to be prepared for it

What she heard was the “death rattle”. I was stunned. I had heard the term before but never really knew what it meant.

This is a sound that can be like a gurgle or a rattling noise that a person makes when he or she is no longer able to swallow or cough to clear saliva and mucus from the back of the throat and upper airways. It is a common sign that someone is nearing death.

I couldn’t believe it because the sound I heard was more like a soft gurgle than a rattle.

That sent me to the Internet to research it and the findings left me shaken. With that sound, death is imminent within 16 hours to 48 hours.

Left with little hope of a recovery, I began informing my family members living overseas to come home. But none could make it in time to see Mum one last time because she was gone 48 hours later.

While I grieve, I take solace that she went peacefully and is no longer suffering.

I am also glad we took Dr Khor’s advice and had planned her funeral and final resting place in advance. To give time for my siblings to return from abroad, the two-day wake will be held tomorrow and Friday and burial is on Saturday.

With help from many good people, we will be able to give our Mum, Mary Magdalene Wong Yoot Ho, a Catholic farewell as she would have wanted it.

Goodbye, Ma. May you be reunited with Dad, the love of your life, in heaven.

The views expressed here are the writer’s own.