Thursday, March 23

Love: An integral part of caregiving


Writer feeding her mother, who has advanced dementia.

MY friend told me about a teammate who had to give up her job and community involvement to care for her highly-dependent elderly mother.

“That’s why we hadn’t seen her in a long time.

“She’s returned because her mother died. She’s such a filial child,” she said.

Potties, wheelchairs, adult pampers and all the unglamorous jobs just sprang to mind.

“Not for me,” I mused. For all my compassion and commiseration, I could not imagine myself fixing adult pampers, toileting and cleaning and you-know-what-that-means.

My beloved parents, including my mother-in-law, were growing old gracefully and pretty mobile at the time. Life was so good in a sense that I had not given a thought on their ageing process, let alone being a caregiver akin to my friend’s teammate.

It was the honeymoon period of my life. My two children had completed their studies and graduated. I had a church ministry, a good social life, was writing books, and helped a couple of non-governmental organisations (NGOs) – you name it.

Photo shows the writer’s mother’s hand in her mother-in-law’s, when the latter was not well.

Turn of events in 2009

My normal carefree life suddenly came to a halt in 2009. My father developed severe vascular dementia after a few strokes and needed care round the clock due to mental disabilities. He lost his sense of direction and was confused. Thanks to all his children who worked together selflessly to care for him and above all, thanks to God, without whom we would not have the strength to care that much.

At the unexpected turn of events, my siblings and I were found to be quite competent in providing care for our father no doubt it was our maiden first-hand experience in caregiving.

Love must be the impulse to the whole process.

Driven by my woman instinct, I volunteered to be the primary caregiver.

Women with all their feminine traits are generally cut for the job. As we can see, the majority of caregivers for the elderly are women.

I took on the role of primary caregiver without much thought, not because I was good at it or possessed all the feminine characteristics – I did not even know how to bake a cake!

I just did it because it was the right thing to do.

A mini infirmary

I took my father and mother in regardless of the cost, and lo and behold, my house was transformed into a mini-hospital. My mother-in-law was my first ‘patient.’ She had been staying with us (my small family) for a few years after suffering a mild stroke, while my mother’s health was already deteriorating with signs of early dementia.

I felt like a matron. It was a brand new experience that I had to tackle with all the creativity, ability, and strength that I had. My three siblings shared in the filial responsibilities by coming to our house on a regular basis.

Photo of the family members of the writer (seated front, third left) taken during her mother’s funeral. Her mother-in-law is on her right.

My vascular-dementia-stricken father was at the top of the list, followed by the two ladies. It would be a matter of time that the ladies would follow suit.

Much as I did not see it coming when times were good, I was well on my way to becoming a ‘full-fledged’ caregiver. There was no two ways about it.

There ought to be a place in our lives for our elderly parents no matter what the circumstances.

It never occurred to us that we would send any of our parents to a nursing home. It would be a strange thing if we did, especially when all of us were still strong.

Thirteen years on today, the labour of love continues.

When my father passed away in 2012, I still had my mother and my mother-in-law to care for.

I remained a homebound caregiver, struggling to master the art of handling a dementia patient as my mother’s dementia was just as bad as my father’s.

Labour of love unending

The tasks of a family caregiver are endless – food preparation, administering medicines, laundry, spoon-feeding, bathing, toileting, lifting dead weights, shifting and moving, nursing bedsores, dressing, and name it. I was moved to name my house ‘Mercy’!

There were some brief periods when I had a helper or a nurse, but for the most part, I was on my own with a lot of help and support from my siblings and my husband, of course.

My beloved mother died of advanced dementia in January 2022 after being bedridden for over three years.

She was 90.

However, my ‘contract’ did not end there. I still had my mother-in-law, 96, who was then wheelchair-bound. Amazingly, she survived Covid-19 last April, but has remained bedridden until today.

The writer’s eldest brother welcoming the morning with their mother on the wheelchair.

It is hard to fully grasp the pains, the frustrations and the exhaustion of a caregiver looking after a highly-dependent loved one who requires long-term care and never be able to recover.

It is like all the heaviness and pains of the loved one are on us. The human problems attached to it are another story.

In my conversation with God, I do ask in passing: “How long more, Lord?”

I sense that God has some more trials for me and I see what He means in the following verses:

“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything” (James 1:2-4).

Letting God shape my character

“I call it a season in my life and that’s a good season because I am learning myself and letting God shape my character. As we care, we are also teaching our children by example. Although my children are not here, I do talk about it with them via video calls or when I go home to Canada,” says a former classmate of mine who wanted to be identified only as Maureen.

Maureen came back to Kuching about a decade ago to look after her frail mother. She had planned in advance for the filial task and had managed to make Sarawak her second home.

Sadly, her father died after short illness only months before she was scheduled to move to Kuching as planned.

As it happened, she was ‘exempted’ from caring for her late father much as she had planned to care for both him and her mother in their advanced age.

As planned, she is now caring for her nonagenarian mother, who has gone frail and weak.

“We need to be on top of things. Our parents are not going to live forever and so, it’s essential that we recognise the signs of ageing. The younger generation has to involve their parents as they grow older. Maybe some parents will say: ‘You know what? I don’t need you to look after us’. But why not just say: ‘Let’s plan this together’.

“It’s good to do it when they’re still strong,” she said.

Caring gives our lives meaning, in which we learn to be patient and compassionate.

Preparing ahead for ageing

Yes, we need to recognise the signs of ageing. Even as I write, I age.

This is life.

Ultimately, we all need someone to care for us. We will grow old. Caregiving itself, the physical side of it, is very hard and we have to be emotionally and mentally prepared.

“Planning is crucial. Our first priority in the morning is them. The day ends the same — if it does end,” chuckled Maureen. “And then you also have to do the housework as some of us don’t have housekeepers coming in.

“It’s a huge amount of effort and dedication. I gave up my work. I don’t know how you can write. When I think about what you can do, I can’t compare with you,” she said humbly.

I was virtually housebound for many years as a caregiver, having to care for two parents with severe dementia. Those were the most difficult times. Yes, I recall finishing a couple of books during that time. I’m not sure how I did it, but I did it somehow.

When my mother became bedridden as a result of advanced dementia, I no longer had to be constantly vigilant to ensure her safety.

However, new issues arose. Bedsores were a major issue.

Spoon-feeding could take an hour because she did not always open her mouth and forgot how to swallow food. I had to study the movement of her mouth and follow her momentum to be able to push the spoon in.

My helpful little granddaughter was very creative. “Abracadabra…!” she would utter.
Surprisingly, it worked. My mother’s mouth opened!

“There will be times you will be distracted such as when you’re on the cellphone swiping away and you’re feeding her, but then the spoon is actually going to her nose.

“This is the funny part!

“Also we have to respect their privacy. If she doesn’t want her private parts washed by me, I hold the hose and let her do it,” said Maureen.

Love – An integral part

“We learn the art of caregiving. We need to overcome impatience.

“I get impatient sometimes. That’s why we need to plan our work. Patience is less of yourself and more of them. If we’re impatient, we will think that the person we’re caring is taking more of our time.

“I often ask myself what are the things that I’ve done wrong in caring,” said Maureen.

“Sometimes we fail. We shout and lose our temper.

“We just have to learn to avoid it. We need to have some sort of predictability as well. I can almost predict what type of mood my mom will be in. Sometimes, it could be a symptom of dementia, or maybe it is just her.

“I learn to give understanding all the same,” she continued.

We do not have to compromise our quality of life just because we are in the caregiving position.
We can improve the quality of both lives together. For instance, I played the songs of my mother’s time almost the whole day as she lay on bed.

I did something for myself, too. Since it was difficult for me to leave the house most times, I started my own little shows in my mother’s room and called myself ‘the geriatric deejay’, some I posted on Facebook.

“You want to go out, you just put lipsticks on her lips. You know, caregiving is an art – totally different from our art class in school!” Maureen quipped.

During our carefree days when life was good and our parents were strong and healthy, we did not think of their ageing process.

Even so, when the time comes, things just fall into place. Any filial child will do what is right for their parents.

Caring for elderly parents should be intentional. Unfortunately, that one core value of our society is slowly eroding. The elderly folks are becoming almost invisible.

Caring gives our lives meaning. We learn to be patient and compassionate.

I begin to realise that caring, because it is based on love and humanity, actually improves my quality of life.

When love is removed from the equation, it is nothing.