The extraordinary love of my father

For most of my childhood, I spent weekdays longing for my dad. Every Saturday morning, he’d come pick up my sister Stacey and me in his jaunty little red Toyota, transporting us away from a hot and cold household to a Disney dream of a family: his warm sister Susan, her infinitely calm husband, and their two daughters who were like younger sisters to me.

This family enjoyed each other more than any other I’ve ever known. Aunt Sue would single out each member of our crowded dinner table and ask, “What was the best thing that happened to you this week?” Stacey and I weren’t used to this kind of adult attention; my mother and stepfather often read at the dinner table, expecting silence from us.

But Dad soothed our aching hearts with his unconditional love, gentleness — and a fair bit of spoiling. There was always something fun: Happy Meals, sundaes, fried clam rolls, hikes, go-kart rides or new books. Sometimes all of them.

Each Sunday evening, when Dad would drive off in his little red Toyota, I’d trail behind him outside. Without fail, I watched until he was fully out of sight, knowing how long the week would feel without him.

When I was 13, the threat of violence that always hung over my house exploded. I hadn’t done my homework. When I told my mother that my stepfather had punched me several times, she coldly replied that I had probably deserved it. My stepdad said I had to leave, a demand he would retract the next day, but by then I had seen my escape and seized it. By the weekend, I was living with Dad.

I’d been the scapegoat who’d drawn so much of my stepfather’s wrath, and things got worse for Stacey after. She wouldn’t agree to join me because she felt too guilty leaving Mom.

I had been in a near-trance state before the incident, thinking frequently of suicide. I sleepwalked through the school day, then came home and watched the numbers change on my digital clock. I couldn’t look away; I was compelled to witness every minute change to the next, and the bigger changes like 11:59 to midnight brought me some tiny relief.

I became very good at counting to precisely 60 seconds. My clock-like sense of time persists today.

I had been doing this every day after school until bed, interrupted by a brief, mostly silent family dinner, for weeks or months, I don’t remember.

Aunt Sue, opening her arms and household wide for me, sat me down my first day at her and Dad’s house. “None of this is your fault,” she said with huge conviction. I wept with relief, only then realizing I had believed the constant punishment and anger were my fault, something I could control.

But it wasn’t always easy adjusting to living with this big family. I felt like a second-class citizen who had to be careful not to take up space, although no one treated me that way. And everything was different: TVs were always blaring, and the house was loud and chaotic. There were few rules and lots of consideration for my cousins, which I was jealous of. Dad was my sanctuary from this strange situation and my lonely time in a new school. I would hang out in his room and help him fix radios or just read near him.

Dad and I were so much alike. He shared with me his deep love of movies, both good and bad. We watched Harvey and The Philadelphia Story and Harold and Maude, plus every B and C movie that came on cable. We cracked ourselves, making fun of the absurd dialogue, corny acting and low-budget special effects.

Dad also liked to take Stacey and me fishing, to a favorite collection of down-home diners and fried seafood joints, on driving trips around New England and Canada and to yard sales.

Dad charmed everyone he met along the way, and he enjoyed everything about life, especially simple things.

Everything had an upside. Anything could be enjoyed.

I remember a 1-hour, 45-minute wait for breakfast at a restaurant called Percy’s, which we later learned locals called “the perseverance.” Dad, Aunt Susan, their visiting cousin and I kept thinking our food would be there at any moment. As the situation became progressively more absurd, I guess we stayed to see how it would play out — because we were having too much fun laughing. We made friends with another table, and they stayed as well. We all cheered when our frustrated waitress ripped up our check and walked off the job for good.

Life was fun, no matter the circumstances.

Dad was a live-for-today person unburdened by selfishness or worry about the future. He was also generous — to a fault. He paid for me to go to Catholic school so I could get out of the terrible school I was in, and reassured me I’d actually paid for half by earning a scholarship. When I still struggled with loneliness and mental health issues for a couple of years, Dad decided what I needed was confidence, and found an unusual way to give it to me: flying lessons. Amazingly, his plan worked, and I began to come out of my shell and make friends I still have today.

Dad also supported the widow of his best friend, giving her family hundreds of dollars every month to cover budget shortfalls, even knowing her gambling problem was the cause of those shortfalls.

Dad’s generosity wasn’t always a blessing. He didn’t save enough to buffer us when we moved into our own place, or to prevent me from having to work two jobs in college. Later, I wasn’t surprisd to realize he hadn’t saved a thing for retirement.

Realizing my idolized father wasn’t perfect, that he was human and had flaws, was one of the hardest parts of growing up. I remember him being excited about one of my Christmas stocking stuffers, a carousel ornament I was too old for. I judged him for spending foolishly when I saw the attached price tag, and had a moment of contemptuous pity that he’d spent our limited money to buy a little girl’s gift for a teenager.

But then I felt a wave of love, picturing Dad choosing little gifts for my sister and me, getting excited to select things that would make us happy. I can still feel his love when I hold that ornament, which has survived more moves than I can count.

People remember my dad fondly — and everyone was fond of him — as an entertainer with a big, goofy, joyful laugh. He dressed up as Santa Claus every year at my maternal grandmother’s house long past the divorce, cracking jokes for the adults the whole time. Mom’s seven sisters and brothers asked for Dad when he wasn’t there.

Dad once visited me in New Orleans with Susan, her husband and one of my cousins, and I took them to an intimate Tunisian restaurant. It was crowded with families there to celebrate university graduation. There was a belly dancer entertaining the crowd, and Dad decided he wanted to join in the fun. He stood up, lifted his shirt and rippled his sun-forsaken belly broadly at the belly dancer, a trick he used to practice as a child, and which he later taught my children. The whole restaurant roared with laughter, drawing out the confused owner to find out what happened.

It was one of those moments you instantly know your family would tell every year at the Thanksgiving table until no one was left to remember it.

Dad’s humor always tended toward the endearingly corny. Every time we bought something, he’d tell the cashier, “Oh, a bargain at twice the price,” pronouncing it ‘bahgin’ in his thick Boston accent, while I groaned.

He charmed every restaurant server and one once asked me if my handsome dad was available.

My most Dad memory actually happened a lot. My sister and her best-friend cousin, whom Sue regularly invited for the weekend, would call from the den, “Daddy. Daaaaddy.” He’d go to them and oh-so-pleasantly ask what they needed. “Can you get us juice, Daddy?” they would ask, as if their 12-year-old legs were simply too tired to leave their comfy mound of blankets. And he did it without batting an eye. He knew none of us were getting spoiled in our normal lives, and these little things would make us feel loved.

I saw Dad cry for the first time when I left for college, in New Orleans, 1,700 miles away. I stayed for the better part of 14 years, and then moved to the mid-Atlantic.

Our relationship changed in that I didn’t see Dad as often, but we talked every week, often for hours. When Dad visited or I went home, it was the highlight of my year.

I missed Dad dreadfully and began to have terrifying nightmares about him dying. Before I had children, losing Dad was the biggest fear in my life.

He was the biggest nature lover I’ve known, and after my grandparents passed, he finally realized his dream of moving north. He bought a house way up a dirt road on a mountain in Vermont’s beautiful Northeast Kingdom, close to Canada and far from civilization. This huge piece of land on the edge of the woods was his heaven for a few years.

But then a major heart attack changed everything. It was the first time I — nearly nine months pregnant and unable to go to him — seriously considered the possibility I could actually lose Dad. He moved in with us for a few months after but quickly realized he hated Maryland so he returned to Vermont, living in a small apartment near his job and best friend.

But things were different. His visits, which I’d always looked forward to, became exhausting, and I couldn’t put my finger on why. Dad had always had a terrible memory, which made it hard to spot the early signs of dementia.

Things got much worse during peak Covid. Dad mostly stopped answering texts and calls, although he sounded fine when we did talk. I reached out to his best friend in Vermont, and he shared my concerns. We eventually got Dad in for testing at his Veterans Affairs clinic, but the results were inconclusive. His healthcare provider started sending an occupational therapist weekly to check on him and help him out. They assured me he was fine.

But medical privacy rules meant the VA staff couldn’t really talk to me. They could make an exception for my dad’s listed emergency contact, his sister Susan.

This period of not knowing was very stressful but it wasn’t as bad as what was to come. Two weeks into a demanding new job, I got a call from Susan. She told me she’d been in intensive care after receiving an operation to remove a malignant tumor. The operation had gone well but she’d contracted a terrible bacterial infection that had almost killed her, and in that time had missed several calls from a social worker in Vermont.

The news was scary: Dad hadn’t recognized the occupational therapist when she arrived for her weekly visit, but had told her, “You seem like a nice lady, come on in.” Since Susan missed the calls, and the social worker involved didn’t know I called Veterans Affairs every week begging for info, she assumed the family wasn’t involved enough. They were considering taking Dad into state custody.

Thus, in 24 hours, I went from not knowing to knowing that things weren’t OK. With my young children and husband, I drove 11 hours to Vermont pack Dad’s place up. Within 72 hours, he was living in our home.

It was January of 2021, peak Covid. With the exception of my firefighter husband’s work shifts, all five of us were home all the time.

Becoming Dad’s caretaker — essentially a parent — wasn’t an easy adjustment. I was prepared for repetitive conversation and memory lapses, but not odd behavior, lack of judgment and emotional dysregulation. I had to convince Dad to shower, a biweekly battle, and then supervise him because he forgot how to use the hot water or why he was there. I had to threaten to call the police when he insisted he was going to sleep in the woods in freezing-cold weather.

And then convince him to eat his vegetables and pretend not to notice when he snuck them into the trash in a napkin.

My life was overtaken by doctor’s appointments, trying to sort out Dad’s financial situation, and painstakingly replacing the crucial identification cards he’d thrown out.

My husband and I quickly realized we could no longer leave Dad alone for very long, which meant no more family vacations.

Dad followed me everywhere, and I couldn’t get a break because I worked at home. He listened and watched intently while I worked, while I tried to reconnect with my husband during our nightly cooking-and-cocktail hour, when I wanted to take a walk alone to escape my crowded house.

Things escalated, and after a year-and-a-half, I made the sudden decision to place Dad in a nursing home. He was acting erratically and ‘sundowning,’ staying up at night in a state of extreme confusion. He’d been doing things like drinking a quart of maple syrup in one sitting, eating dog food, going into the children’s bedrooms late at night and scaring them, and threatening to hit them. He was behaving in a way that could become dangerous at the time I could least supervise him.

After Dad chased my 6-year-old up the stairs trying to spank him, he threw a full glass of water — glass and all — at him in frustration. I knew it was more than I could handle, and it was only going to get worse.

I also knew getting him into a nursing home, which costs a minimum of $10,000 a month, wouldn’t be as simple as just finding the right one. I was still tracking down documentation he needed for Medicaid and running into huge barriers.

I called his care provider, the Veterans Affairs outpatient facility near us, and asked for their help. They had none to offer but suggested a urinary tract infection might have caused the escalation and that I should take him to the emergency room.

We waited nine hours to get in, and then I repeated the symptoms and story over and over to new care personnel. How Dad had chased, threatened and scared the kids and drunk every bit of liquor in the house one week before we noticed what was happening (Dad had never really drunk before dementia). Dad sat patiently, the truth dawning on him with repetition.

When it was time for me to leave, Dad displayed something I’d never seen — giant tears — and clung to me. I told him I’d be back the next day. Every day when I came back, Dad told me, “I thought I’d never see you again.” His sense of time was completely warped, and to him, I’d been gone years or maybe a decade. But still, we took long walks in the halls and danced to Prince in the hospital room. All the nurses told me how much they adored him.

Dad was in the hospital for three weeks while I worked with social workers and called anyone I knew who could help to try to figure out what was next. In the end, I put him into a nursing home. It wasn’t a great facility but there was an outdoor area he could visit, and they had accepted his government assistance-pending status. The better nursing homes wouldn’t because of the financial risk.

I expected enormous guilt when I left him. What I didn’t expect was that I began to enjoy him again. This kind, big-hearted man who loved my sister and me more than anyone else in the world.

And one day, I remembered that I loved him more than anyone else in the world. He’d been the cornerstone of my life until my relationship with my husband gradually superseded it. My husband I had recently realized I could never love again, and had separated from.

I was crying to a friend about this, and she said, “I’m sure you’ve told him that.” I had not, but of course he knew? Of course he didn’t. No one knows unless you tell them.

So I told him the next time I saw him, about a month before he died. Dad cried giant tears again and held me tight. We were both close to sobbing. “It’s because you were such a great one,” said my dad, his voice thick with emotion he no longer had the words to properly articulate. He’d stopped saying my name by then, but there was deep emotion in his tears and his hug. I knew what he meant.

I left sobbing, feeling like I’d said goodbye. The next time I saw him, he’d forgotten his grandchildren and called me ‘ma’am’ when he hugged me, a bit relieved to see me go.

When the end came, it came quickly. An inability to flush potassium led to a catheter. The catheter led to a UTI, which became sepsis. Three bouts of sepsis in two months, and Dad was in hospice with toxic shock. His organs were shutting down.

Dad was what the doctors called ‘minimally conscious.’ They said, if you can get back here in time, he’ll probably know you’re here.

The end wasn’t peaceful, like I’d thought hospice would be.

But Dad definitely knew I was there. The nurses hadn’t been able to clear and wet his mouth because he chomped down hard in fear, but he didn’t move a muscle when I did it. He tracked me with his eyes, and I could see expressions of happiness when I told about good memories, and I saw his dehydrated dear ducts struggling to shed tears at other times.

And then I realized he could blink for ‘yes.’

Do you want me to put some water in your mouth, Dad?

Yes.

Are you scared?

Yes.

For those few days in hospice, it was mostly Dad and me. My mother had flown in to take care of my children and life so I could focus on him.

The small bit of heavily divided tine I’d been able to spend with him when he lived with me was all his now. I hovered over him for hours, later feeling the ache in my neck. I told him stories, how much he meant to me, what was happening. I told him over and over, because he probably didn’t remember.

I played song after song, deeply comforting tunes that now lurk like landmines in my Spotify app. I sang to him. I showed him a clip I remembered from his favorite movie. He watched intently, surprising me with his attention span. In the scene, Jimmy Stewart muses how one had to choose between being ever so smart or ever so pleasant. He’d chosen pleasant, just like my dad always had.

I held the phone so relatives and friends could say goodbye, hearing their grief and helping them communicate and then process. But mostly it was just me and Dad, and lots of love.

Dad never regained any movement or ability to talk, but his vital signs improved enough that the hospice started talking about discharging him. I panicked, faced with agonizing decisions to take care of him at home with only a weekly visit from a nurse, or to return him helpless and unable to communicate to the nursing home I didn’t trust, or figure out a whole new plan.

But by the next day, Dad was much worse. His raspy breathing had begun to rattle. Intervals between breaths became longer and more uneven. I listened intently for small changes. I listened so closely that when I later tried guided meditations to sleep, the breathing exercises sent me into a panic attack.

It had maybe four or five days, and the end was approaching but no one would say how long it might take. I hadn’t been sleeping. Dad stopped breathing, which sent me into a panic attack, even when he started again.

I was exhausted and knew I couldn’t spend the night there and be there the next day. Dad was scared and sad. I begged the hospice nurse for insight into when he might pass so I could decide to stay or go. Ignoring my question, she looked deeply into my eyes and said kindly, “You should go home.”

Relieved of this decision — after so many decisions — I went home.

The next day when I arrived, it was clear this would be the final day. I was no longer panicking. I was ready for the end of Dad’s struggles. But he still wasn’t peaceful.

Susan called and talked to him in soothing tones, and I left her talking so I could get a hot chocolate. When I returned, Dad was still and I thought for a moment that he had passed. He hadn’t, and I played “Let It Be” and looked at my work messages for a moment. Whatever they said amused me.

When I looked up, Dad was peaceful. He’d stopped breathing and I was pretty sure this was it. Susan had asked me to call when the time came but I remembered that the brain takes several minutes to die and I didn’t want him to think I’d left him, so I gripped his arm for perhaps two minutes.

And then he breathed. A tiny, barely audible breath. I wanted to call Sue but I couldn’t turn away, paralyzed by fear of abandoning him at the his moment. After a couple of minutes, I called Sue. “It’s time.”

We both murmured a quiet thing or two. Without thinking about it, I’d started calling him Daddy again, like a small child.

After all his fear and confusion, Dad was finally peaceful in these last five minutes. It was so intimate, just him, his Susan and me while he slipped slowly out of this world, breathing perhaps every 90 seconds.

The hospice nurse came in. “He’s gone,” she said.

“Are you sure?” I said with unintentional comic effect. She just looked at me.

“I was positive he was gone five minutes ago.”

Infinitely patient, or perhaps too experienced to argue with crazy, she gave me another long look and took out her stethoscope. It was over.

I’d always known when my mother passed, that I’d have complicated, unresolved emotions. Sometimes we’ve gotten our relationship right, and sometimes we haven’t.

When Dad passed, I experienced the purest form of grief: simple sadness for the person I had the most uncomplicated, loving, so-close-to-perfect relationship with. I see the long decades stretch out in front of me without possibility of ever seeing Dad again.

I picture the dreams, the infinite longing without the promise of a weekend with Dad to come.

And yet I know the relationship between Dad and me was the cornerstone of both of our lives. The deep, patient, completely uncritical love he gave me is what will give me the strength to weather the hardest storm of my life.