For a condition that already affects more than 80,000 people (and growing by the day) in Singapore, dementia should be in the spotlight more than it currently is, so that we can take it more seriously. And perhaps, we may see a cure or a vaccine sooner.

Yet, it manages to stay pretty much under the radar and remains a mystery to many of us who may think it is part of normal ageing and can be staved off with physical and mental activities and specific diets.

So much so that I was shocked when my mother was diagnosed with (middle-stage) dementia in 2014, at the age of 74.

For months after that, I soul-searched to understand how my family failed to detect the onset of dementia earlier.

Ultimately, I concluded that I was negligent largely because I was ignorant and did not know what to look for.

In hindsight, I should have noticed earlier what I now know are the tell-tale signs her body was transmitting, from the gradual loss of interest in her Chinese dance classes (I thought she just got lazy) and forgetfulness (I thought it was due to ageing) to the occasional outburst of frustration (I thought she was being very unreasonable each time it happened).

It also did not cross my mind that we needed to look out for any signs.

It was not until my brother and I stepped in more actively to help out in our parents’ daily lives (my father was diagnosed with cancer in late 2013) that it was clear to us that something was not quite right with her.

EARLY DETECTION IS KEY

If we had detected the condition in its early stage, we could have bought time by slowing down the advance of dementia with medication.

As it turned out, we had no idea we were left with only two years of quality time with my mother after her diagnosis, during which she seemed to be more or less her “normal” self.

She got on with her life and continued to live with a full-time domestic helper after my father passed away in 2015.

Whenever I dropped in to check in on her or spend Sundays with her, she would insist I must have “better things to do” and that she was more than capable of taking care of herself.

The first real inkling I had that her condition was deteriorating was when she asked me to take her home.

That unnerved me because we were watching TV at her home where she had lived for the past 40 years.

Because I could not convince her she was already home, and she got increasingly upset, I lied and told her I needed to rest before the drive.

Thankfully, she forgot about her request by the time I had “rested”.

I soon learnt to not challenge or correct her whenever she said something that did not make sense to me.

A few months after that incident, she succumbed to late-stage dementia which very severely clipped her memory and cognitive abilities and rendered her completely dependent on us. 

I became a stranger to her as she no longer recognises me as her son.

At the same time, the mother I love became eclipsed by a much dreaded “body double” — an elderly lady who looks like her but whose hostile personality cannot be more different.

CAREGIVERS NEED TO TAKE CARE OF THEMSELVES TOO

As the horrors of dementia unfolded before us, I quickly learned that while a patient bears the brunt of the devastation, family members who are caregivers take a heavy beating too.

For me, the physical effort involved in providing care for my mother  —  such as moving her around since she became non-ambulatory — feels like a drop in the ocean compared to the tsunami of emotions that relentlessly erodes my mental well-being.

The biggest challenge I face is the guilt I feel for not living with her. It got to the point where anything else I did at work or in my personal life felt half-baked to me. 

Trying to balance spending time with her, holding a full-time job, spending time with my partner and having some “me-time” for myself continues to be a huge stress point.

But I have learned to be kinder to myself, and accept that I can only do my “best” — visit her every day during the week and spend Sundays with her when her helper takes the day off — and not everything.

When I am with her, it is usually an uphill battle to stay positive because she is either yelling or refuses to say anything for hours on end.

It is also a challenge to feed her food, as this can easily take an hour or more, depending on her mood.

The one thing that provides some respite is that her vital signs seem relatively normal.

I also struggle mentally with doing things for her such as changing her diapers because they make me sad to see her so helpless.

Before dementia set in, she was fiercely independent and was loath to trouble anyone (even her family) for anything.

Taking care of our elderly parents may seem like the natural thing to do, but when the parent-child relationship becomes fully inverted and we become a “parent” to them, the emotional upheavals can be almost too much to bear. 

I eventually got around this by imagining I am doing the “parental tasks” for her “body double”, not for her. This helped me to preserve the memories of the mother I have known all my life.

SILVER LINING

Although it was not obvious to see it that way, I had to admit that dementia is not all doom and gloom.

For one thing, it provided a much-needed closure to an issue that bothered me most of my adult life  —  I never found the nerve to come out to my mother.

While she dozed off one Sunday, I decided to sort things out in her apartment and chanced upon an old journal I last used in 1993.

As I flipped through it, a piece of paper that looked like a reading list compiled by her fell out.

I realised she must have slipped it into my journal a long time ago and hoped that when I found it, I would understand that she was supportive of my sexuality all along.

Dementia also taught me to not take things for granted.

It was a wake-up call I had not realised that I badly needed. Whenever my mother flashes a rare smile at me now, even if it is a tentative one, it makes my day.

If there is such a thing as a silver lining to dementia, this might be it for me.

ABOUT THE AUTHOR:

Roger Pua has more than 25 years of international work experience, and was most recently senior director of brand marketing and corporate communications at LinkedIn. He is also the author of “Sundays are for mummy: What if memories could live forever”, a book that sheds light on living with dementia in the family.