I’m afraid of my dad’s bedroom. The bare, unlit space smells of old urine and disease, holding nothing but a bed stripped of its sheets and a streak of blood staining the wall. A weathered wheelchair sits in the bathroom; on top, a folded cotton shirt and shorts he was supposed to wear the morning he was sent to hospice.
I prefer to keep Dad’s bedroom door closed. It allows me to pretend he’s inside snoring or jotting down notes in the newspaper. The door, which still carries an alarm system, hides the reminders of the person he became.
On Feb. 13, my dad passed away from complications of Alzheimer’s disease. For six days, he lay in a twin bed in a hospice room, his shallow breaths growing farther apart and his jagged bones poking into his grayish skin, as if they could pierce through at any moment. His jaw rested open, and his eyes were permanently shut from high doses of morphine and a lack of energy, listening to strangers say goodbye.
Dad woke up every day at 6:30 a.m. He went for a brisk 2-mile jog, showered, shaved his stubbled chin (leaving the master bathroom smelling of baby powder and menthol) and put on a tailored Brooks Brothers suit with a red tie. Before cruising to the law office in his 1990 bronze Cadillac, he filled a Ziploc bag with peanuts and a sandwich: whole wheat bread and two slices of American cheese.
When he arrived home from 5 p.m. traffic, he stood in the entryway of our galley kitchen while my twin brother and I fought our way into his arms, finding comfort in the familiar scent of his suit jacket. I sat on the counter next to the oven, giggling and telling him stories from swim practice, watching him pour several glasses of red wine while cooking pesto pasta or ragu bolognese. He had a strict bedtime of 8:30 p.m., often leading to irritated shouts if the living room television was too loud.
Even on the weekends, Dad stuck to a routine. He drove my brother and me to the Palm Beach Zoo. We hustled through the maze of wild animals and pointed fingers at the anteater, Dad imitating its long tongue poking at ants. When we’d come home, he showered and sat in his designated silk living room chair with a highlighter, surrounded by legal pads and stacked printed files organized by case and title. Sunday mornings were for watching “Saturday Night Live,” recorded from the previous day, the final act in our unvarying weekend ritual.
Dad was old-school and traditional — a grumpy man if his schedule was disrupted. He was the opposite of a risk taker, though my mom claims he was quite the partier in law school. His regimented lifestyle made Mom fall in love with him, but it also made it easier for her to know when something was off.
Misplacing his Cadillac keys in the refrigerator, scattering his notes throughout the house and forgetting the fried chicken recipe he hand-made every Saturday night. He started to ask more questions, and he couldn’t remember the names of my friends or the drama I told him about the night before. His forgetfulness eventually turned into frustration, causing him to frantically scribble incoherent notes across his legal pads or the newspaper, perhaps thinking if he wrote down his thoughts enough times, he could never lose them.
I didn’t see the signs like Mom did. To me, Dad was becoming more fun, more willing to let loose. The year before he was diagnosed, he drove us to Williams-Sonoma, where we browsed aisles of gourmet Dutch ovens and chef knives, and he taught me what each pot was used for and the Italian pasta sauces we could create in them. Before leaving, he swiftly took out his credit card without a second thought and purchased a $90 pizza stone. He didn’t remember we had the same pizza stone, still sitting untouched in its box, on the top shelf of our pantry.
Later that month, Dad and I took a weekend trip to the local Barnes & Noble, where he spent over $100 on New York travel books and maps. For years, I begged him to take me to Rockefeller Plaza so we could take pictures under the NBC Studios neon sign. But only now did he agree, despite once wanting to wait until I was older so I would “remember it more.”
We organized his new travel book collection on our antique dining room table, and, over the next two weeks, handwrote an itinerary: land at JFK airport, visit the Met Museum, walk through Central Park, take pictures in front of the New York Times office. But the morning we planned to book the airplane tickets, Mom asked me to come into her room, close the door behind me and keep my voice down. She said Dad had unexpectedly broken down in front of her, hysterically crying while asking, “Where am I?”
“I don’t trust him to get you home safely,” she told me.
It was obvious she felt guilty for crashing down on our plans. There was sadness in her eyes, but at the time, I thought she was paranoid — simply overreacting. I didn’t leave my room the next day. I endlessly complained to my mom, texting snarky comments about her to my eighth-grade friends and ignoring her when she asked me about school.
I was angry with Dad, too, for not standing up for himself or the trip we dedicated so many hours to planning and daydreaming about. I thought he’d experienced a weak moment, a mental breakdown, and that there was nothing to worry about.
It was easy for Mom and I to ignore his symptoms, to chalk them up to more reasonable excuses, like he was drinking too much red wine at night or was depressed and stressed from his busy caseload at work. But Dad’s meltdown proved to Mom there was a deeper issue, leading her to spend months dragging him to neurologist and therapist appointments.
I think, deep down, she knew Alzheimer’s was a possibility — the worst-case scenario we often associate with forgetfulness and aging — and why no excuse from doctors was ever good enough.
I DIDN’T CARE when Mom told my brother and I that my dad’s neurologist diagnosed him with early-onset Alzheimer’s disease.
We were having dinner at my cousin’s house when my mom sat us down in the backyard to break the news. Dad was 58. My brother and I were 14. The concept of Alzheimer’s was unknown to me, and I was more annoyed with the rain soaking through my jeans from the moldy seat cushion I was sitting on.
I didn’t ask any questions, and I didn’t cry. We resumed dinner, and I went home with my parents as I had every night, thinking nothing had significantly changed.
Looking back, my refusal to accept his diagnosis was due to my lack of knowledge about the disease. Alzheimer’s was the nightmare I briefly heard from my friends — their grandma was diagnosed with dementia and couldn’t remember their name — or on “60 Minutes” episodes, which showed clips of old men with dementia who could still carry on conversations and walk without assistance.
I didn’t know what to expect, and since I couldn’t understand my father’s disease, I chose to ignore it.
But Dad became more erratic, and it was easy to notice his mind was slipping.
When I was 16, he began to swim in our backyard obsessively — he’d freestyle a couple of laps, walk back inside, dry off and head right back into the pool. He would also repeatedly leave the house, walk to the end of the street and walk home, forgetting he had already gone 10 times before. He gave up cooking and stopped picking up books and the newspaper. He sat around the house, asking us the same questions and looking confused when we told him a story.
I was embarrassed to invite friends over. I could sense how uncomfortable they felt when he came in and out of my bedroom to say hello or called them by the wrong name.
Dad was happy, but his mind and independence were fading.
Everyone looked up to my dad. He was the one you called up for legal advice or help making a major life decision — family members who needed help sifting through their bills, friends who wanted a “big deal” attorney to fight their case. Dad radiated importance. His former colleagues still say they admire his work ethic and miss his dry, sometimes offensive, humor. Dad was also arrogant, but he had every reason to be: he was a dedicated father, loyal husband and charming, handsome attorney who fought to preserve the Everglades.
My father’s intelligence was what he and so many of us valued most about him. There’s always been a sense of shock among my family when we talk about his diagnosis, which stole everything from him. Alzheimer’s has always sounded like an evil coincidence, a parasite that was hungry for the things that made Dad himself.
When Dad was diagnosed, he firmly asked my mom not to tell any of his coworkers or friends. He simply disappeared from his life before.
Former colleagues and friends sent emails, asking what happened and if he was still practicing law. They asked if he changed his phone number or if they could meet for coffee. But Dad never responded, and my mom followed his wishes, so the emails and phone calls eventually stopped coming.
I was always angry Dad chose to ignore them, to betray his friends by disappearing from their lives and never saying goodbye. But I understand now. He was embarrassed to admit he had an incurable weakness and was no longer the witty man his friends knew. Dad never liked showing emotion or “stupidity,” so it was easier to go out in silence. His mind was his strength; I think he believed he would become nothing without it.
Caring for Dad over the last eight years instilled chaos into our lives. We had to adjust our thoughts, future and home to him as he continued to decline, becoming more of a vessel for the disease than a person.
Four years after his diagnosis, I moved away to college, and his simple fogginess and confusion rapidly accelerated, eventually turning him into a danger to himself. Mom never expected it; doctors often said he could last 20 years or five.
“Every patient is different,” they said, referring to symptoms as much as life expectancy.
I came home for Christmas break freshman year to find he couldn’t remember my name. At first, he thought I was his sister or wife. Other times, he thought I was a familiar friend or an enemy.
The following summer, I noticed he couldn’t understand his emotions or find the words to express his needs. He forgot to eat dinner or ravaged through the fridge and stole food off our plates, unable to recognize if he was hungry or full. He’d sit trembling on the couch, searching for the words to tell us he was cold or wanted a blanket.
It became a constant guessing game: Will Dad be cold tonight, should we put a sweatshirt on him before bed? He won’t stop opening the fridge, is he hungry? He keeps unbuttoning his shorts, does he need to use the bathroom?
There was always miscommunication between us. Mom and I repeated ourselves to him while he stared blankly or mumbled sentences we couldn’t understand, a combination of words that didn’t go together and vocabulary he must have created on his own.
He became obsessive compulsive; every tiny object in the room bothered him. The tapping of his feet, rustling of papers and screeching furniture followed him as he repeatedly circled the house. It was as if he would have been happier in an empty room, maybe because his mind was already too cluttered with thoughts floating away.
Then he got angry and frustrated by his shortcomings, which made him mean and aggressive. His once cheerful babbling turned to screams and growls when Mom attempted to transfer him from the wheelchair to shower, often leading to my brother having to carry him.
He hit Mom and screamed “fuck you bitch” when she shaved his beard.
He’d lock his legs and urinate on the floor in protest when she changed his diaper, and he’d grab my shoulders and forcefully shake when I tried to lead him into the car.
We began to hide the knives in the back of a kitchen cabinet. Mom started asking us to put away our personal items, like computers and paperwork, because he’d obsessively pick them up, rip them apart or stick them in his mouth.
One night, I forgot to wrap up the cupcakes and handmade candles I decorated for my family for Christmas. I woke up to smashed cupcakes with large bites taken out of them, cupcake tin included, and gashes in the candle wax. We still wonder if he ate the candles.
On New Year’s Eve, Mom tasked me with staying home with him so she could take a vacation with family for the night. I offered him a sandwich and tucked him into bed, leaving the bedroom thinking he was asleep.
There was a slight banging on the sliding glass doors behind the living room, but I thought nothing of it, expecting it was just fireworks. Ten minutes later, I walked outside to find my dad shivering, standing naked by the pool, dripping in water.
He had managed to break open his door and fall into the pool.
And yet, I had it easy. I could drive back to college and forget the animal my dad was becoming. Mom lost herself. Her confidence diminished as she gave her entire being to a man who could now never be satisfied. She stopped laughing and singing around the house, afraid the noise would annoy him; she never never slept in fear he would escape or hurt himself; she stopped calling to ask about school, because she always had something more important to do like researching how we could financially and physically afford to treat my dad.
My brother had no choice but to stay at home to help care for him instead of moving away to college. He would often sleep during the day so he could be awake at night to comfort Dad when he became agitated.
Caring for him warped our sense of time. Life became what we had to do for him each day. His life and happiness became ours. It transformed into not just trying to get through each day but working to get through the next years as painlessly as possible.
We baby-proofed the house to ensure he was safe from himself at all times. Mom spent most of her afternoons researching health insurance plans or calculating how we could afford the next couple years, especially if we had to hire part-time assistance. She was always meeting with doctors, working to try to find a different anti-anxiety drug or change his medication dosages in the hope it would decrease his aggression.
Toward the end, his anger subsided slightly, as he no longer had the energy to fight back as often. He slept for most of the day and struggled to open his eyes and walk. His body started to melt away, his skin growing thinner and his cheekbones becoming more defined because he couldn’t remember how to swallow food or water.
The last time I saw him, before he split his forehead open and was sent to the emergency room and hospice, he stared at me with soulless eyes.
For years, I hated him. Though it wasn’t his fault, I was disgusted by the way he screamed when I put on his sweatshirt and the way he treated Mom when she tried to help. I hated the language he used, the demeaning words he yelled. I thought, he did this to Mom, he’s why she’s aged 10 years in four.
I struggled to recognize the person in front of me: a man who used to make me laugh so hard I fell to the floor. A father who cut up my pancakes into bite-sized triangles every Sunday morning before helping me with my science homework. I couldn’t relate to who he became, and I could never understand his anger, or vulgarity, so it became easier to separate Dad from the disease that took over his body.
When he was first diagnosed, Mom asked him what Alzheimer’s felt like. He said he would “have a thought and then it would just disappear like a cloud of smoke.”
I often feel the same way about my memories of him.
My resentment of the disease made it challenging to remember what he was really like — what made him Dad. The images of his comforting face have slipped from my memory. Perhaps it was a result of passing time, or a coping mechanism to prevent his decline from having too much of an impact on my life.
I was forced to grieve my dad while he was withering away in front of me, still breathing and talking for eight years. And I wondered if the second grieving process, after his heart and breathing finally stopped, might feel more like what therapists say to expect.
Sometimes, I secretly hoped he would pass away in his sleep. I thought it would relieve Mom and my brother from the never-ending cycle of caring for him. And I knew Dad never wanted this.
I expected it to be peaceful. I thought I’d be filled with an incredible sense of freedom. Our family could finally move on with our lives, and Dad would be removed from his suffering.
After his passing, there was a sense of relief. The sun shines brighter in our home, and my brother seems less anxious when I visit on the weekends. Our lives do feel like they have begun again, even if it’s still taking some getting used to.
Mom often says the “hardest things in life make you the strongest,” but I’ve struggled to notice a positive difference within myself over the last eight years — a growth in character opposed to my new fear of dying or waking up with a terminal illness. I worry about the future, if Dad’s genetics predispose my brother and me to the same suffering. I question the purpose of our lives since one day it will all be over and memories of us will be forgotten.
And I’ve noticed, too, a new anger within myself — a hatred for Dad’s bad luck. I can’t comprehend that out of 8 billion people, Alzheimer’s chose to prey on him. I’m enraged that Dad never had a choice; he was forced to transform into a helpless child, to surrender his memories, relationships and joy to the disease.
Mom still flinches when the phone rings, expecting a call with news that my father has hit a nurse at daycare or thrown his food at another patient.
I still forget I can now enter our house through the front door, which had been child-locked to prevent our dad from breaking it down at night. When Mom calls to say she’s going to bed, I often accidentally ask if Dad has fallen asleep yet, forgetting there’s a new silence and emptiness in our home.
It’s almost as if I miss his obnoxious banging and screaming because at least it would mean he hadn’t ceased to exist.
A couple of months after Dad’s diagnosis, he and Mom decided to pack up our Delray Beach vacation apartment and put it on the market. We spent the weekend there, sleeping among cardboard boxes and Clorox wipes, while Dad remained seemingly cheerful despite knowing what was to come.
On our last night, Dad and I sat in pajamas on pink Adirondack chairs facing the ocean. We brought flashlights, but Dad chose not to use them since the moon happened to be so bright.
We sat criss cross applesauce, afraid the fire ants would attack us if our feet touched the sand. Dad asked me about my classmates, where I wanted to go to college and if I still hoped to pursue competitive swimming. I asked him about his mom who had passed before I was born, how it felt when she was diagnosed with Parkinson’s disease and what it was like growing up throughout the country.
I wish I had asked more questions.
I wish I spent the three hours studying his mind, analyzing how he phrased his sentences and sarcastically laughed.
I should have asked him what moving by himself to Boston for college felt like, why he decided to be a lawyer, when the first time he drank alcohol was and what his first college party was like. Was he happy? Did he feel fulfilled with his life? Was he scared?
I think there’s a mysterious comfort to surrendering our control, to know we will never get to choose how or when we say goodbye.
My regrets with Dad have motivated me to ask more questions, even to strangers. I’ve learned to take advantage of the boring road trips with family or the days when I would prefer to rot in bed and cancel plans with friends. Those moments are often the perfect chance to understand better the ones we love, or perhaps the ones we misunderstand.
And the questions, regardless of how trivial or intrusive they might sound, provide a selection of memories and pictures to choose from when they’re gone.
Dad shouldn’t have had to live angry and confused for eight years.
Mom shouldn’t have had to watch the man she calls her “perfect puzzle piece” forget who she was, sacrificing a part of herself for him.
My brother shouldn’t have had to spend his nights picking Dad off the floor instead of spending time with friends.
And the one time I told Dad how much I loved him, and how often I use the lessons he instilled in me, shouldn’t have been when he was unconscious in a hospice bed.
But it happened. And like Dad used to say, “There’s nothing I can do about it right now.”
The week Dad spent his final days in hospice, Mom stayed the nights with him while I slept at my cousin’s house. On the final morning, I wasn’t surprised to learn my dad died. But I was startled by the dream I had awoken from at about 3:00 a.m.
It was of Dad, which was odd since I never dreamed about him. I was a child, looking up at him, and he still had his muscular arms and youthful face. We chatted playfully, yet I couldn’t recall what was said.
Later that day, I sat with Mom, looking at the fresh flowers we received while reviewing Dad’s will. I’m not a religious or spiritual person, but she is, so I thought it might ease her mind to tell her about the dream.
She told me she heard Dad take his last breath around 3:30 a.m. And she said it made sense that he spoke to me so casually. Dad was never the type of person to say goodbye.
