It’s already distressing when you’re informed that your mother has vascular dementia. It’s doubly devastating when you’re told at the same time that your father has Alzheimer’s disease.
That was what happened to me in December 2018, which marked the beginning of a hellish journey full of worry, regret, frustration, and a trillion other negatively inclined emotions.
To make things worse, in the same month, I had also just started employment at a new place after an extended “in-between jobs” (as the colloquialism goes) hiatus. Unfortunately, the new job quickly turned sour due to a mismatch of expectations and skill sets.
With much-appreciated aid from relatives on my mother’s side, my parents were eventually ensconced in a nursing home that specialises in caring for the dementia-stricken. But not before a trial period of sorts, where my increasingly addled-minded father moved in to stay with me for five months, a time marked by much exasperation and dismay from both sides, to say the least (to be clear: laypersons are not qualified to handle Alzheimer’s patients, only trained caregivers can do so in any sort of competent way).
To add to the woes, I had to juggle between caring for him, managing two households, and dealing with an increasingly vexing workplace. It was a miracle that I managed to weather through the storm.
All was relatively well for a certain period, but after they were moved to another home about a year later, another medical emergency occurred, where my mother was hospitalised for nearly asphyxiating because of food that went down the wrong way.
We were then told that she has to go on tube feeding, since the dementia has compromised her ability to swallow normally. This meant buying a dozen tins of a special nutrition-based milk for her consumption every month, the cost of which easily ran into four figures.
In addition, by this point in time, my mother has already become a quadriplegic, unable to recognise loved ones, or even speak, much less care for herself. In other words, she has become like a newborn infant, requiring round-the-clock care by an experienced caregiver.
My father has also become increasingly confused, sometimes not even aware of the time or day or his surroundings. Worst of all, for a man who took pride in his ability to do almost any manual tasks around the house, his knees have started to give way, and he has to start wearing adult diapers, since he has lost control of the ability to control his motions.
Contrary to popular belief, dementia and Alzheimer’s patients do not merely experience forgetfulness. They go through a whole gauntlet of increasingly debilitating conditions, as described above.
The merciful thing about the whole sorry situation is that my parents are totally unaware of their ailments, the dementia and Alzheimer’s having taken their cognitive functions some time ago.
But for family members, the toll is immeasurable. Not just the financial costs, but also the exacting temporal and emotional demands that can easily break anyone.
Sometimes, in between the ceaseless monitoring of my parents’ welfare through visits and phone calls to the caregiver, budgeting the amount of money that needs to be forked out every month for whatever expense my parents might incur, the juggling of work life, personal life, household maintenance and other stuff, I just feel like giving up the ghost.
But then, I’ll say to myself: No, this is what needs to be done, because there’s no one else to do it.
I am thankful for, and highly appreciative of my mother’s relatives, for their part in lending a hand in more ways than one, but for others who might not have such a support system, the situation would be absolutely catastrophic on an unimaginable scale. I shudder to think how it would be if I didn’t have access to said resources.
Today, things have stabilised greatly. I am in a job that I highly cherish, where I am valued and respected for my abilities and opinions, which is all that anyone can ask for, really.
I have my health, and I have become more confident in dealing with the curveballs that everyday life can throw at you.
I can’t do much for my parents at this juncture, except to hope that their sufferings will be relatively eased as time goes on (although there is no known miracle cure for dementia or Alzheimer’s). That’s how it is now, for better or worse.
The following quote from a Tears for Fears song perfectly sums up the present situation (albeit rather obliquely):
“Mistral came into my lifе like a wind of change
Crept in through my eyes and seepеd inside my brain
When stars were growing dim
She showed me the world within and told me
No need to worry about the world
You can’t see the beauty for all the hurt
Turn the world around
Blind them with your sound, ’cause it’s the end of night.”
(“End of Night”, Tears for Fears)
CT Chua is CodeBlue’s sub-editor, who appreciates all the help he has been getting over the last four years.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.