More often than not, the shared memories between two individuals is the thread that holds a relationship together. Now imagine if a gnarled hand slowly came out of nowhere, curled its wretched fingers around that thread, and began to pull–not quickly, not to startle, but slowly as to prolong the pain and agony of watching everything you have come to know and love fall apart.
To many of us, Alzheimer’s evokes a certain fear wherein a day may come when we’ll be stripped of any memory of our current lives and we’ll be unable to recognize those we hold dearest to our hearts, but what about the lives of others of whom it afflicts? What about those who take the strain and anguish in caring for the diagnosed? What about the people who witness firsthand the deterioration of their loved ones until the only recognizable facet left is the shell of a person they once knew? It is with such concern that we delve deeper into the other victims of Alzheimer’s who often remain unrecognized and disremembered.
A first-hand witness
A typical day for 49 year old Ramon Moro in the memory care facility would involve spending time with five to eight patients and guiding them in their everyday activities. These include mundane tasks such as grooming and feeding, to more challenging responsibilities of getting them to exercise their cognitive and motor abilities. With years of experience studying and caring for people who suffer from Alzheimer’s under his belt, Ramon has seen the ailment in action–from its early stages of mild memory loss and trouble remembering certain words to the devastating effects of its later stages where patients begin to forget how to do basic physical activities such as walking, and even swallowing.
“Alzheimer’s is truly a brain eater, neurologically, it will diminish your brain functions. You no longer know how to think or to make judgement calls. You don’t remember anything,” Ramon explains. The ailment replaces a normally-functioning human being with one unable to make rational decisions, incapable of remembering simple things like what time of the day it is, how to change clothes, and even how to drink water. “Sometimes even when they eat, they don’t know what a spoon and fork is for,” Ramon explains. “It’s as if somebody took their brains out and they lost all ideas of what to do and how to do them.”
To make matters even more grim, “It’s irreversible. It’s a degenerative disease. It’s meant to degenerate your body. There’s no medicine to cure it. The only medicine around is medicine to prolong the process. It’s only to stall it but not end it.” he mentions. There is nothing left to do but to wish those given the diagnosis a safe and decent passage.
Each day in the facility was never like any other. “Every day was always a different drama,” Ramon mentions. “You’d always be wondering if today was going to be a good day for the patient or a bad day.” Good days would often be characterized by cheery and chatty moods, but on some days, some patients get into depressive moods and catatonia, with nothing but silence to fill their days.
Over the years, Ramon has encountered all kinds of patients with their own unique backstories: From former soldiers and bus drivers to CEOs, engineers, and pilots. One interesting thing he found in common among a lot of his patients was that the memories involving their work or passions often stuck to them. If it came up in the conversation, the patients would become fixated on it and could go into great detail about it. Ramon recalls one of his patients who used to tour around the circus in Canada as an acrobat, and how this patient would constantly discuss his performances. “That’s all he would ever talk to me about,” Ramon says. “But if you ask them anything else, they don’t know. They don’t even know who their wife is or where they live.” Sent to the care facility, these patients live a life of limbo: Barely able to piece out their pasts, incapable of imagining a future. The afflicted float in the hazy scenes of the present, often invaded by certainties that they were once people, doing ordinary or extraordinary jobs, loving and being loved–those moments like confections to their already fading minds.
The emotional toil
It is often said that it’s the family members of someone diagnosed with Alzheimer’s who are the real victims. From the diagnosis up until the later stages of the disease, the many agonies that come with watching someone you know and love change into someone you no longer recognize is often a heavy burden to bear.
Susalin Mendoza, whose father was diagnosed with Alzheimer’s a year before his death, is no stranger to the mysterious ravaging of the neurodegenerative disease. “For most of us it was more of a ‘so what now?’ We didn’t know what to expect.”
For Susalin, the hardest part about seeing her father through the last year of his life as he battled Alzheimer’s, was simply the understanding of the fact that she was losing him. “There would be moments he could not recognize me anymore and ask who I am. I would tell him who I was and he’d just nod his head. It’s like he was just being civil because he didn’t know me at all.” she says.
At a certain stage of his disease, her father often ended up raiding the refrigerator in the middle of the night, leaving only an open, half-eaten sachet of tomato paste as proof of his having been there. “My brother described my dad as ‘one lean mean eating machine.’ My dad never felt full,” It seems as though Susalin’s father didn’t go down without a fight–even against one as unforgiving as Alzheimer’s. Unfortunately, tomato paste and leftovers weren’t the only thing Susalin’s father had to be protected from. “My brother had to keep away in a locked place all the cleaning materials because my dad might just ingest those.” It’s dangers like these people who have Alzheimer’s have to be protected from, because they forget what’s hazardous and what’s not.
Though there’s no denying the pain Alzheimer’s leaves in its path, pain is not all that there is. For people like Susalin, fragments of their loved one’s former self become beacons of light. When one begins to lose himself, it’s only natural for the person watching to grab at something they can hold on to. For Susalin, the part of her father that she grabbed at first was, “The laughter. That’s the gift he gave us. When he was present, he always easily made us laugh. He played with words and he was witty.”
A change. Not a loss.
Where most would see the diagnosis of Alzheimer’s as a prerequisite to an inevitable loss, Rachelle Holandez, who’s had years of experience working in the field of neuropsychology, sees things differently. “Rather than looking at it as ‘loss’, I prefer to look at it as ‘change.’”
Though there is no denying the hardships family members of Alzheimer’s patients face, Rachelle makes it a point not to belittle the experience of the person actually diagnosed with the degenerative disease. “Despite their obvious challenges, there are AD patients who still have so much wisdom and one can learn a lot from them. Each AD patient has his/her own personality but for as long as they are treated with respect, compassion, and sensitivity, it is not difficult to work with them.”
For her doctorate dissertation, Rachelle studied exceptional dementia caregivers and found that the two key factors that contribute to exceptional caregiving are insight and compassion. When people understand exactly the way Alzheimer’s and dementia work; when they know the patient’s background and experience; and when they have faith in the expertise of the doctors involved, there is less (if not nothing) to be afraid of. After all, “Regardless of how different they may be from how they used to be before, and regardless of whatever challenges they have, they are still individuals deserving of respect.” She puts it.
Rachelle’s approach to dealing with Alzheimer’s patients is permeated by an aim to empower both the patient and the patient’s caregivers. “If one takes the perspective of riding the change, being creative in looking for solutions to help the patient, ensuring that there is a medical doctor taking care of the medical needs of the patient, and ensuring that the family is coping adequately, then I do not have to worry.”
Her focus on moving forward instead of constantly contemplating on the changes is a good habit anyone caring for an Alzheimer’s patient can draw inspiration from. Rachelle points out that though Alzheimer’s is a degenerative disease with no known cure, not everything is lost. “Despite the changes, there is still that kernel of their old self in them–their wisdom, their sense of humor, their gutsiness, whatever positive trait they have that is still there. Or, if the change is a welcome change (e.g., they’ve become more mellow, they’ve become more childlike in their joys) we try to build on that.”
What keeps people going in seemingly hopeless situations like these–where one has no choice but to watch their loved one change beyond the point of recognition? For Susalin, the woman who cared for her father during the last year of his life as he lived with the effects of Alzheimer’s, it was her love and respect for her father. She chose to acknowledge her father’s imperfections and at the same time, recognize that he loved her and her family as best he knew how. “Love begets love. Respect for the elders were instilled in all of us. It’s like…[you] took care of us before, now let us take care of you,” she says. “Never forget how much your parents love you. Never let go of your love for them. Love will really see you through. Nothing else will.”
For Rachelle, the neuropsychologist, a piece of advice to people who struggle with looking after a loved one with Alzheimer’s is this: “Let go of your ego and whatever issues you have had with your loved one. Let go of the past. Look forward.”
Alzheimer’s is a ruthless criminal, robbing people of their original identity, never to be returned again–not even for the highest ransom. Though the inevitability of unwanted change is a hard pill to swallow, it tends to make one think, “Is denial worth it?” Looking back and reminiscing just takes up more time in the already ticking clock. It’s not always easy to look forward–especially with a disease such as Alzheimer’s, where all one can seem to do is compare a ghost of the past with a shadow of the present. But the human spirit, which has proven to be unbreakable countless times, can be quite stubborn.