My mother’s keeper

Nov 19, 2021

By Karen Michaela Tan
The vicious hold that Parkinson’s and Lewy Body Dementia has on my 76- year old mother has forced me to look at the Fifth Commandment ‘Honour your father and your mother’ in a wholly different light. For many grown or older children, this Commandment is not something we often (if ever) confess to breaking when we unburden during the sacrament of reconciliation. After all, most of us over-forties are long past the stage where we sass Mum and try to push the limits of Dad’s curfews.

And yet, the responsibility to this Commandment comes into stark reality when a grown child has to make decisions on their parents’ behalf. My mother was a career woman all her life. A proverbial ‘boomer’, she worked her way from clerk to secretary to loans administration manager at a local bank until she took voluntary separation of service when she was 53.

After that, she dug in the garden and killed a lot of plants, and bought more to replace the deceased ones; became personal shopper for each of her four grandchildren (thankfully only one of those varmints were mine), and embarked on a long, dependable role as lector at Holy Rosary Church. She hosted rosary devotions, BEC gatherings, and dutifully went to every funeral in our neighbourhood, all the while retaining her reputation as one of the most stylish, put-together women in the community.

Things began to change when my medical school graduate husband urged me to take Mum for a checkup because he noticed her hands trembling occasionally. This coincided with what was to be my last ever trip with her, when we went to the funeral of my grandaunt in Singapore. That trip, when I shared a hotel room with her – the first time I had co-habited with her since I got married 15 years ago – I noticed her unsteady gait, the sudden unfocussed demeanour of this hitherto eagle-eyed woman. The most unnerving thing, however, was how she incessantly went through her luggage and handbag, almost obsessively. Again and again, at weird times, even in the middle of the night. A consultation with a geriatrician confirmed Parkinson’s. An MRI did not yet show the protein deposits in the brain which characterised Lewy Body, so her erratic, compulsive behaviour was labelled dementia. Because I had watched and had the part care of my maternal grandmother who was ‘nyanyuk’ (at that time all this medical information was not available to us), I was hell-bent that Mum would not go down that road. My grandmother had scared away all our hired help with her wild accusations. On more than one occasion, she had ordered our housekeeper to open her mouth because mama was positive Jaya had stolen her false teeth and was wearing them!

I launched into a flurry of research and got Mum into occupational and rehabilitation therapy three times a week. We saw our geriatrician monthly to fine tune medication and doses. Ditto with the neurologist. We knew there was no cure. Our only hope was to slow the impending situation, to maintain her level of physical ability and cognitive skills at a point where she could still be independent.

COVID and MCO killed all that. In the months that I could not cross over from Selangor to Kuala Lumpur, Mum deteriorated. Without forced physical exercise, her body atrophied and seized up. She went from being able to shower herself to not knowing what to do with the grab bars we installed in the bath stall where my father showered her.

I already saw the inevitable. Dad is reasonably fit, but he is 78. The 1.5 years of COVID had taken a toll on him as he was Mum’s sole caregiver. Twenty-four hours with a person with limited mobility is already hard. But add the nonsensical behaviour of dementia, and life becomes a living hell. My mother accused Dad of wanting to marry the neighbour across the road, of having a Vietnamese mistress who apparently was living in the family house. She would go from lucid to completely off her rocker in the space of a sentence.

I lobbied to put Mum into a home. I told Dad time and time again that he would break down looking after her, but he told me that he had promised her that he would try to take care of her to the best of his ‘better or worse’ vows. Theirs wasn’t a fair-weather Hollywood marriage, by any means. Six months ago, he told me to respect his decision and not bring up the subject of institutionalising Mum again. Out of respect for his wishes, I honoured my father and mother and dropped all searches for homes.

Late last month, on a Sunday evening, my father rang me. He never voice calls unless it is an emergency. His voice was strained and choked. “I can’t do this anymore. I am exhausted. We have to put Mum in a home.”

I pulled out all stops to get Mum settled comfortably in a wonderful place in the space of a week. I cannot lie that I felt more relieved than sad when we drove out of the care home without my mother. She is at the stage where when she is in her own house, she asks to “go home.” While we spoke to her before her admission, I am not sure how much of it she understood.

I think latently she is cognizant that she has become a burden. And my stoic, independent mother would have hated to be that. In a way, her malleability was possibly resignation, and a kind-of understanding that Dad had reached the end of his emotional and physical strength, arranging her stiff body in bed, lifting her leaden legs to dress and undress her; performing the most intimate of cleaning and hygiene duties.

I have had three years to mull over the Commandment that exhorts me to honour my father and mother. And the God-given intelligence that makes Man steward of creation tells me that in this situation, more care is needed for the still coherent, still living father, than the mother in this shadowy quasi-life. Like the airplane announcement that instructs adults to ensure they put on the emergency oxygen masks on themselves first before their children, I have chosen to deploy my resources to ensuring that my father recovers from the physical and emotional trauma of caring for someone with such a trying suite of illnesses.

I am not abandoning my mother, though. The intervention I staged was a stop-gap to allow space and time for clarity of thought. The plan, as it stands, is to let Dad recover while the family works at making their house more disabled-friendly, and preparing it for the possibility of a full-time care giver.

In all this, I am struck by the providence of God: the ability of a place in a well-run, Christian care home at such short notice, financial assistance from my eldest aunt who helped subsidise the care, the pastoral love of a parish priest who came to anoint both parents prior to Mum’s leaving, and the help of friends who rallied to help me either hold the fort in my personal life or lend muscle to the clearing of the family house.

When all this happened, I remember committing my actions to God. I told Him that I did not need to know the destination, I only needed to know that the road I was on was the correct one. As psalm 119 says, “Thy Word is a lamp unto my feet and light unto my path.” Lamps do not illuminate the entire road. They cast enough light only for us not to stumble. I do not know where this road will lead, but I have to walk in confidence of a God who will not let my foot be bruised on a stone (paraphrasing psalm 91), and by whose guidance I will continue to honour my father and mother.