The diagnosis happened on a Wednesday. Alzheimer’s disease. This big, loud, heavy word came in like a whisper but fell with a thud, like a rock splashed in the water making a thousand tiny ripples.
The diagnosis itself wasn’t a surprise. My dad had been diagnosed with a mild form of dementia a year earlier, and we all knew the condition had declined since then. Over the course of the past year, his symptoms went from repeating questions and forgetting the names of his grandchildren to not knowing who won the election and not recognizing his son-in-law.
But while these situations are startling, unsettling, and impossible to ignore, there are also long stretches of lucidity when you might suspect that he was merely having a “senior moment.”
My father loves to sing and dance, though he doesn’t know the words to most songs and rhythm was never his forte, and it brings out a joy in him that is sometimes clouded by confusion. I’ve seen him bust a move to “Ice Ice Baby” and heard him serenade my mom with his rendition of “Natural Woman” while watching Dancing With the Stars — one of his favorite shows. My mom blushes and giggles, but deep down I know it brings her joy as well. My dad is more sentimental and proud than ever, and when my sister recently gave him a collage of family photos, he simultaneously wept and beamed.
For most of the past year, it felt like we were living in limbo, knowing he wasn’t well and the situation was deteriorating, but unsure just how unwell he was or what the prognosis would be.
In some ways, the diagnosis was a relief; we’re done waiting, now we know. And since that big and heavy word — Alzheimer’s — had already been bandied about, whether hypothetically or prophetically, the diagnosis itself wasn’t necessarily a surprise either. In fact, the news spread through the family through a series of text messages, all confirming what we already suspected. Tiny ripples tapped out on iPhone screens.
With more than 5 million Americans living with Alzheimer’s disease, the issues my family faces are not unique. In fact, according to the recent PBS documentary Every Minute Counts, the disease is one of the most critical public health crises facing the country. The financial impact of the disease is staggering, as are the social and emotional impacts on the entire family. In a 2015 installment of the NPR series Inside Alzheimer’s, journalist Greg O’Brien — who was diagnosed with early-onset Alzheimer’s disease himself in 2009 — describes the disease as “death in slow motion.”
In some ways, the diagnosis came in more like a whisper than a shout. Unlike other diseases or medical conditions, like cancer or heart failure, there are no big decisions to be made about treatment. Little progress has been made in treatment options and research hasn’t yet produced a drug that alters the disease’s course.
Nevertheless, given the rampant rate of Alzheimer’s disease, researchers are pressing ahead. The passage of the 21st Century Cures Act, which sets aside $3 billion over 10 years to fund research of brain diseases and offers prize money to encourage Alzheimer’s experiments, has reinvigorated researchers. But for the time being, treatment options — at least for my father — are at a standstill.
In other ways, the whispered diagnosis fell heavy like a hard stone in a placid lake, with ripples spreading out like spindly tentacles into every aspect of our lives.
The most troubling thing about the diagnosis is knowing what lies ahead, and worrying what will be left in the wake of the disease. What will people think if they know, or if they don’t know? Will the legacy of the man my father had been be shadowed by the forgotten memories of the disease? Will the man he once was get lost in the disease he is slowly becoming? Will his legacy be that of forgotten memories and confusion, or will it be of that person he was before the disease?
The ripples spread throughout the family, of course. I wondered what my children — his grandchildren — would remember about the man he was becoming under the shackles of the disease. And of course, the ripples spread fast and furious to the rest of family, too. How would the disease impact the rest of us — my mom, my brother, my sister and I? What would the disease do to us as individuals, and as siblings?
When I was little, whenever my siblings and I would fight, my mom would get this pained look on her face, like she was physically hurting. “My only wish in life is that you three get along,” she’d say, and we’d roll our eyes.
Now, with two sons of my own, I can fully appreciate the sentiment behind her words. She didn’t just want us to tolerate each other, but to be friends, comrades, and partners in this thing called life — both during the relatively short era that is childhood, and, more importantly, during the long haul, so we’d have people to love, guide, and support us when life got tough.
With children of my own who bicker endlessly and love each other fiercely, I am also realizing she needn’t have worried so much about whether those childhood squabbles would tarnish our relationships or thwart any future bond for the tough times. Because it’s in those tough times that the bond is created, not the other way around. As my brother, sister, and I have all witnessed the slow cognitive decline of our dad, we are the only ones who can truly understand what each other is feeling.
I have friends and peers with personal experience dealing with Alzheimer’s, but given that I’m still in my 30s (even if only for a few more months), most of the knowledge my peers have of the disease is through a grandparent or elderly relative; not their own parent.
My husband is a tenacious supporter and, quite frankly, has been just as emotionally distraught by my dad’s medical condition as anyone; but his relationship is that of a son-in-law, not a son or daughter. My mom, of course, is impacted most by the disease and, like most caregivers, she will probably be eligible for sainthood soon; but her relationship with my dad has always been the wholly unique one of matrimony.
Which leaves my siblings and me. We are the ones closest to understanding — and I mean really understanding — what this disease means for our family as a whole, and for each of us personally.
Of course, we each process things in our own way and the situation affects us all differently. My brother and sister both live near my parents, and are available on a day-to-day basis, whereas I live three hours away and am of limited utility (which is a source of both guilt and comfort). Some of us are emotional, others more pragmatic. Some of us are more independent by nature, others more closely intertwined with the family dynamic. But despite these differences in personality and circumstance, we see each other through the tumult and tough times with an inherent understanding of what each other is going through, because we all share the role of being our father’s child.
My dad’s diagnosis might have come in like a whisper, falling with a loud and heavy thud, leaving countless ripples in its wake. My dad’s memories might be slipping, he might be more timid and dependent, but our memories of the person he was — confident, generous, bold — are firmly etched in our hearts and minds. We will be the carriers of that light, as the darkness of the disease falls heavy.
Even though there are ripples of struggle and challenges, there are also ripples of friendship, solidarity, and support among my siblings and me — strong connections and bonds my __parents wished for since we were born. Regardless of whatever crashing waves this rock called Alzheimer’s disease leaves in its wake, those ripples will be part my father’s legacy as well.