Commentary: Your parents are (probably) not OK
The care of dementia-stricken family members is a growing burden that we should prepare ourselves for, says father-of-three Imran Johri.
by Imran Johri · CNA · JoinSINGAPORE: There I was, in my first year of university in late 1996, in a phone booth in a suburb in Perth with a fistful of Australian coins, and with dad telling me over the payphone: “Your mother needs to go for brain surgery.”
My immediate response to him was for me to come home, ditch the degree and start work immediately. His stern retort was: “No, stay. I’ll handle it.” It perfectly summed up the very essence of my father - he, who is responsible.
That was the start of a now 28-year caregiving journey for my father. While my mother recovered remarkably well despite the removal of a golf ball-sized tumour in her head, she has to consume a pharmacy of medication for the rest of her life. My father has supervised this upkeep of medication and steroids since the day she was discharged from the hospital.
THE LIMITS OF THE CAREGIVER
By the time my mum reached her mid-60s, the first signs of dementia were painfully obvious - the forgetfulness, the indiscernible banter and most tellingly, the general confusion. It was, however, only obvious to my wife, as someone with an outsider eye, and a relatively new member of the extended family. The rest of us were in denial, especially my father.
It took years, in fact, for my siblings and me to finally admit to mum’s deteriorating mental state. This, on the part of my wife, was an extreme challenge to overcome. While she could plainly see the behavioural decline, it was near-impossible for her to broach the topic without the siblings dismissing and even snapping back at the sheer mention of “dementia”.
The biggest hurdle, however, was the primary caregiver, my dad.
He, who had been taking care of his wife all this time would not, and could not, bear the thought of the regression in mental capacity of his spouse and life partner. Even with us, the children, who had accepted the undiagnosed condition then, dad could not even make mention of it.
For years, we accepted that it was the primary caregiver’s right to continue caregiving, as he saw fit. This, despite the fact, that he too was beginning to buckle under the strain of her diminishing state of mind. The quarrels between them were now more intense and increasingly frequent - especially with my mother’s incessantly erratic behaviour.
THE PANDEMIC CATALYST
Things took a serious turn during the pandemic. Two senior citizens cooped up in their HDB flat - one having multiple medication doses daily, while the other reaching the limits of caregiving after a quarter of a century of diligence - were about to come to an inevitable consequence.
Both ended up in different hospitals. I distinctly remember the sheer chaos of shuffling the two of them in and out of hospital care, with my mum being cared for after yet another fall at home, and my dad having a mini stroke, from lack of restful sleep and clearly suffering from caregiver fatigue.
It was only then, that my father, in a state of semi-defeat, agreed to let us take my mother to be diagnosed at the Centre for Geriatric Medicine at Tan Tock Seng Hospital. The support team was amazing. They swiftly assessed my mother, diagnosing her with late-stage dementia, and even tested my father for signs of depression.
Through this process, I discovered the vast network of care and support in place for dementia sufferers. Currently, more than 90,000 people are estimated to be living with dementia in Singapore. With the number of cases projected to rise to 152,000 by 2030, including more young-onset dementia in patients below the age of 65, this support will only become more critical.
THE PATH AHEAD IS AT BEST, BLURRY
While my father has now attained some level of stability and regularity, with my mother now in a geriatric daycare for the first half of day, five times a week, and with a well-trained domestic helper to assist him, his resolve as a caregiver is still just as resolute.
Alas, the original caregiver now needs caregiving himself. Now in his mid-70s, my father has had to come to terms with many new difficult elements in his twilight years. He has had to contend with depressive bouts of emotional turmoil - seeing his wife gradually forgetting their past, and then grappling with ongoing mental fatigue and his own mortality.
The best we can do, as his kids, is to constantly check in on him, with regular visits filled with boisterous grandchildren inundating him with ridiculous chatter - and more importantly, reminding him of his vast legacy of love and care.
My brother, sister and I are still unsure how this will eventually pan out in terms of the intermittent caregiving and check-ins from us, as we take turns upkeeping the geriatric care for both parents.
As we enter this phase of caregiving, we are only too aware that, as we hit our 50s, we too might soon have to contend with our own declining mental states. To which we can only hope that our kids can cope with us as well.
Imran Johri is a marketing and editorial professional and a father of three.
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