Alzheimer’s disease is a much dreaded affliction. I say much dreaded not because it is contagious but because it has no known cure. It takes away viciously the humanity of an individual in the most inhumane way. It is an odious disease that leaves a person ruthlessly bereft of the use of the core of one’s being—the mind.
My beloved mother, who lived to 94, had the ill fortune of being counted among the millions worldwide incapacitated by this malady. Our initial realization of her illness left us, her family, shattered. We groped for answers to so many unanswered questions. There were the never-ending whys, whats and hows. I, for one, found it difficult to process that my mother, still full of life (never mind that she was wheel-chair bound) and overflowing with joie de vivre, is afflicted with senile dementia.
Sure, I read about it, heard about it. But that was as far as my interest on the subject went. And now this. My mother, with Alzheimer’s? Never! I was, as they say, in denial. It took some time for the grim reality to sink in.
Initially, things were not as bad (or so we thought) as we pictured them to be. Save for a few “lapses” here and there, she functioned normally. Almost always at dinner time, it was my bounden duty (my siblings and their families have established residences abroad) to ask her the “routine questions” to which she would quizzically and almost protestingly reply, “Why”? Why indeed in heaven’s name was I “pestering” her with “inane” questions like, how many children do you have, can you name them, etc.? Yet, how do I, completely unaware that she knew long before we did that she had AD, tell her that she has an incurable ailment; that she is losing her memory?
Her early self-detection was uncovered much later after her passing when I went through her stuff and found a letter from someone she communicated with who was diagnosed to have the same illness as she had. I cringed at the thought of how she coped, all by her lonesome, with the initial awareness that she was an AD victim. I wondered why she did not let on that she knew all along. Was it to spare us from “needless” worrying?
Descended from a musically-inclined family, she loved playing the piano, singing (she and her sister cut a record of “Beautiful Ohio”) and dancing. On her 90th birthday, undaunted by a hip replacement and knee surgery, she managed to shuffle a few steps to the delight of her guests. She was a most sought-after pianist at every gathering, especially during family reunions and special occasions. With no formal lessons in the craft, she tinkled the ivory keys like a pro.
I affectionately remember my mother to be a woman of simple joys with a cheerful disposition and a forgiving heart. Independent by nature and strong-willed at times, she suffered no fools yet she had a soft spot for the less-privileged. People-oriented and incurably gregarious, (an August-born child, a Leo through and through) she relished attending social events.
My siblings and I learned the rudiments of mah-jong from her. She immensely loved the game. Unfortunately, it did not love her back because more often than not, she lost.
Motherhood was her calling. By choice, she ceased to work after marriage. She and my father were of the belief that children should grow up under a mother’s loving care and watchful eye and no one else’s. To delegate child-rearing to a yaya, was non-negotiable. Even if the three of us kids had nannies who tended our needs, they did so under her motherly guidance. She was what is referred to at present a “hands-on Mom.” I recall the day I went for my first job interview. She tagged along as my chaperone. My officemates would tell me later that they had some apprehensions on my getting hired given my seeming “attachment to my mother’s umbilical cord.”
She was every inch a product not of her but later generations; someone you would call “born ahead of her time.” Sadly, AD (an unforgiving disease, somebody once wrote) turned her, the sweet lady that Kevin, her grandson, fondly remembered and endearing Mama to my brother’s sons Jeremy and Justin, into someone we barely knew. She became less and less of the person we had known, as the days wore on.
To digress a bit, it is heart-warming to note though that medical breakthroughs and ongoing researches on AD are being relentlessly pursued in the hope that a cure is forthcoming. These undertakings may not have benefitted my mother in a personal way, but they enabled us, her family, to deal rationally with Alzheimer’s disease (characterized by amyloid plaques and tangled fibers in the brain). It helped that it is being talked about openly and discussed extensively in media and international fora and not in hushed conversations, as before. They definitely made our ordeal more bearable.
Nonetheless, the stigma attached to AD is still visible to this day, global awareness notwithstanding. With a deep sense of hurt, I watched, during the years that my mother was sick, how those who are ignorant of the disease regarded it with intolerance that bordered on ridicule. It bothered me to see that there are still close-minded people who view it with some degree of callousness. Because to me, struggling to remember who you are is one of life’s greatest tragedies that can befall us all. And I would not wish this scourge on anyone not even on my worst enemy, if I ever have one.
As her infirmity progressed, it was sheer agony to watch her wasting away. To see her in such state was torture like no other. To say that I shed buckets of tears is an understatement. I tried to connect with support groups in my desire to draw strength from them. Putting my mother in a care facility where professional medical attention is administered became an option. However, the Filipino tradition of personally caring for an ailing family member, prohibitive costs and stringent conditions prevailed over what could have been a logical choice.
Call it my unwavering faith, I consoled myself in the thought that my mother’s seeming endless suffering was her “purgatory on earth.” That when she dies, she will go straight to heaven. This simplistic but sobering thought helped me make sense of what appeared to be her needless misery for years. Surrendering anguish to a higher dimension produced a calming effect on me.
I believed then as I believe now that in the final reckoning, what will matter most are the boundless love, care and comfort that we, her family, have showered her with. I know that in her heart of hearts, my mother, surrounded by her family, felt well-loved beyond measure. And that she would not have had it any other way.
When she mercifully went in her sleep, I felt a surge of mixed emotions of relief and grief: the long-awaited relief for her and, needless to say, the inconsolable grief of losing her. This interplay of feelings that accompanied the death of my mother, who went through a series of agony and pain, was, I would like to think, a coping mechanism of a bereaved daughter.
In the end she did not know me anymore. Yet, her memory lives on in me: A memory that is suffused with what is good and decent, a memory of joyful times and warm-hearted nurturing, a memory of her magnanimity beyond question. It must be true what they say that we can get used to the loss of a mother but we can never get over it.
Her gracious smiles are gone now. Her happy songs are heard no more. Her frequent lapses and glassy stares are consigned to the past. Her swift mood swings (for no apparent reason) that took over her gentle demeanor have thankfully stopped. Painful as it is to accept, my mother had Alzheimer’s disease.
Romana F. Gella, 69, is a retiree and widow who “finds writing therapeutic and a source of solace in moments of solitude.”