A profound reversal of roles, caring for parents

Looking after an ailing parent is a daunting, emotionally draining human act of love

The Sunday Times (15 April 2012)

With quiet care, the woman combs the other's hair. It is an everyday act, yet infused with gentleness and devotion. She picks a dress for the other, changes her, sprinkles powder. She feeds a tiny piece of chocolate into the other's mouth, fingers for a moment brushing lips in a passing moment of intimacy.

For all purposes, the other, lying on a bed, could be a daughter, but she is not. She is the parent, now become her child.

The older woman has been reduced by Alzheimer's and this particular beast is a cruelly devouring one. There is an obscenity to the demise of memory, to this eraser taken to the mind, wherein a mother forgets who you are.

Yet as this scene unspools in millions of homes across this planet, in Singapore, too, where roughly 20,000 people aged 60 and above live with dementia, it is met with many things. With frustration, of course, with fear, with anger, but also with duty and affection knotted together into a powerfully humane rope.

There is no measurement for devotion, but this reversal of roles, the child taking care of the parent, is often the most profound.

For those of us in our 40s, and some even younger, a confrontation both emotional and practical is before us. It is not just disease, growing inside like an invisible stain, it is first just the accumulation of years itself on our parents.

Our children grow up, but parents grow old. By 2030, one in five Singaporeans will be 65 or above. They will slow down, they will forget, and at first it is unsettling.

A friend says: 'I am impatient with my mother for not being able to use a computer fast.' Another speaks of a mother, once a teacher, who now substitutes work with a need to talk constantly. 'I find it irritating,' he says. 'I close up and I hate myself for it.'

These are devoted children, merely scrambling honestly through a new, confusing world which I know well.

Just my father's growing deafness rattled me and pushed me to impatience. It took a while to comprehend that I saw this as almost a betrayal: How could this man, my protector, whose arms were my haven, now not hear me? This altered reality bewilders us, this idea that a childhood hero is a vincible man, and we are accosted by the most poignant of truths: No, they are not immortal. Neither are we.

The greying of a parent is a seminal moment, one of vulnerability, of acceptance, when you morph from leaning on a pillar to becoming one yourself. It is a partly familiar role, for we care for our children, but this is different.

Having a child is a choice, but this really isn't. It is a world absent of real control, for calendars cannot be turned backwards. As my daughter, who did her PhD in Alzheimer's in India, wrote to me: 'You confront not just the person you are caring for, but the limitations of your own humanity.'

Ageing and illness bring their own discovery, within ourselves and society. Neglect is hardly unknown, parents are pushed out of homes, loneliness can wrap them like a shroud, families fracture. But much else is found, too, primarily a capacity for compassion which we haven't completely unearthed.

The essential strain of our caring lies in love returned. As a woman, who cared for her mother till the latter was 99, told me: 'Even if a mother is imperfect, she was the security of your childhood which no one else could give you. And now you want to give her that security back.'

It is an ability to offer not just resource but time, to just be there, sit in a room, read a book aloud. The ailments of the old are not merely physical but also psychological. A man is stopped from driving by his doctor; a woman gives up her job and is enveloped in solitude.

Presence then is like a gift of reassurance. A friend remembers the keys her mother wore, tied to her sari, and how its jingle was the sound of her arrival; now her own visiting footsteps into a room bring her mother the knowledge of comfort.

I see change in my friends. Worry, yet valour. The one who struggled with his mother's chatter shifted cities, reordered his priorities, just to be with her. It is not sacrifice for him, it is sharing.

Children rediscover themselves, yet also each other in the process of caring. Families will descend into dissent, but also find new harmony.

A carer said one of her sisters, usually flaky, now was organised in crisis. And as support was shared by these four sisters - and so much of this is done by women - they found their own bond strengthened.

Watching parents interact with each other, as one falls ill, teaches us love in its own fashion. I am told a story of a woman with dementia who was most alert at 3am. And so, at that time, her husband, aware of her love of ice cream, would awake just to feed it to her.

Such caring, of the old or the ill, is full of such intimacies, not just of proximity, but also of touch. A hand put on the forehead or on the arm: Don't worry, it says, I am here. It is there in the changing of a diaper, in chins wiped, in pillows adjusted. In this doing for someone else, we learn about ourselves as we fight resentment and seek to comprehend selflessness.

Caregiving is universal, it is inescapable in a way, it is daunting and there is no manual. It is emotionally draining, yet it is possibly the most human act many of us will undertake. It is replete with failures, yet can afford us eventually a measure of peace.

I remember my wife, sitting in a chair, holding the hand of her mother who had been stolen by Alzheimer's, but saying quietly: 'I know she senses me.'

It is a scene that must unfold in so many homes and it is love at its most undiluted. My mother-in-law died six weeks ago and there was a ceremony, but I am not really one for ritual. It is not the death of the parents that we remember, but how we lived with them that remains.