The year I lost my dad

It started in the summer of 2017. Dad described it as tiredness in his legs. The week before, he’d been unable to finish walking all 18 holes.

My dad had turned into an avid golfer. Years ago, he was the superintendent of a golf course in Oregon. We moved to Idaho when I was seven. He didn’t play much those early years. He was too busy. And maybe when something’s your job, you’re less likely to hang around when you’re not on the clock.

But the golf bug bit me when I was young. I remember those evenings at the golf course — the sun setting while we’d putt on the practice green or hit a ball around the holes near the clubhouse. After moving to Idaho, my dad never worked on a golf course again. But I started buying season passes at the local course at the youth rate of $100 per year. My parents would drop me off at the course several times per week and then pick me up hours later after playing a round.

Golf became my primary sport, eventually playing on the high school team before earning a college scholarship. After graduating college, getting married young and having kids, the cost and time commitment that the game requires resulted in me sometimes going a year or more without playing a round. As I played less, my dad was playing more. He’d been working at the local sugar factory, shift work that gave him flexibility multiple days per week. Although I had little desire to play, he’d get me to the course at least a couple times per year.

I didn’t think too much of it, but it was odd to hear about the tiredness in his legs. He was 59 and in decent physical shape. We figured it was some small issue that would resolve with some rest. But as summer turned into fall, instead of getting better, it worsened.

He was getting weaker in his legs and also seemed to be losing coordination. In November, Brittany and I took the family to Disneyland. He and Mom joined us. We were zooming around the park, making the most of our time there. He was getting tired and having a hard time keeping up. And then he tripped and fell. I remember where we were in the park. He popped back up pretty quickly, laughing. I laughed as well, probably even made a friendly jab at his clumsiness.

Eventually, everyone started getting more concerned. He kept losing strength, slowly and consistently. By that winter, both legs started to shuffle as he walked. He had started seeing doctors and then specialists. Routine tests didn’t provide any answers. We were stuck playing the frustrating game of ruling things out. Was it muscular? Was it something brain related? Eventually an MRI pointed to a potential pinching of his spinal cord. But soon, that was ruled out as well.

I’d remembered that Dad had an aunt who’d died from ALS. It’s a brutal disease. Nerves that control muscles slowly die off. Weakness sets in. Sometimes it starts with slurred speech. Sometimes it starts in the arms or legs. Wherever it first sets in is just where it starts. It will eventually spread everywhere. Muscle by muscle, eventually everything shuts down, including the muscles required to breathe. Victims usually stay cognitively intact, forced to mentally deal with slowly becoming trapped like a prisoner in a body that can no longer move.

I started researching. I learned that there wasn’t a conclusive test for an ALS diagnosis. Instead, many other things would need to be slowly ruled out. They tested for diseases that were serious but treatable. Each time, we hoped for a positive result. Not only because we simply wanted an answer, to finally move towards treatment. But also, because we wanted to rule out ALS — the most devastating diagnosis possible.

One evening, dad sent a video message. I don’t even remember exactly what he said. It was how he said it. I replayed it again and again. He had slurred a few words. Almost like he’d had a few drinks. But he hadn’t. At that moment, I knew. I cried for the first time in years.

A couple months later in early 2018 I was in another neurologist’s office with my parents. My dad had shuffled into the exam room. His speech had worsened. He had weakness in his hands. Yet he was still convinced it wasn’t ALS. In fact, he’d eventually die without ever acknowledging the diagnosis. He would always insist that it was something else. It was almost like by acknowledging he would die, he wasn’t having the faith needed to be healed.

The doctor was very competent and kind. She watched him try different movements and did some tests. Then she calmly and sensitively stated the diagnosis. I wondered how often she had to share devastating news like this. It seemed like it took a toll on her. I’ll never forget the way dad cried when he heard. I held it together until we left the room but then broke down in the parking lot as I called my brother to share the news.

An ALS diagnosis is a death sentence. The only unknown is how long you have. There are a few experimental things that might prolong the inevitable. But if anything, it will only slow down the progression. There is no reversing it. Sometimes you get years. In other cases, far less. What you hope for is slow progression especially while there’s still quality of life. Once mobility is lost and feeding tubes and ventilators are being discussed, it becomes difficult to pray for more time, simply to extend the toll that the disease takes on not only the victim but also on all their loved ones.

Our family’s faith is strong. But life is messy and none of us knew what to think or how to pray with a diagnosis like this. Is it better to pray for healing? For a slow progression? For emotional and spiritual peace in the midst of what feels inevitable? I prayed for all three, but at times, wondered if I was doing it right. If I accept the fact that my dad is going to die and focus on making the most of the time we have left, am I failing to earnestly pray with the faith needed for healing?

It became clear that dad had a fast progressing case. He was diagnosed in the spring and would be gone before Christmas that same year. Dad had the support structure to keep everything from becoming truly terrible. I wonder about the victims of this disease who don’t have a spouse, kids or family that can be there to support them physically and emotionally. Before Dad got sick, Brittany and I had already decided to move across town. Our house sold the same week we got the diagnosis. We found a big house with an in-law suite attached. My parents sold their house as well and we all moved in together.

Later that spring, my older brother brought up an idea. Golf fans know that Father’s Day falls right on US Open Sunday, the last round of one of the most important professional golf tournaments each year. He lives in Nashville and proposed meeting me and Dad in New York where the tournament was being played. It was months away and I had no idea what condition Dad would be in. But we both knew it was most likely the last Father’s Day we’d have with him. That made it an easy decision. We surprised Dad with the news.

By the time we boarded the plane in June, Dad had further deteriorated. He was losing mobility fast enough that we hardly had a chance to adjust to each stage before we found ourselves in another. Using a cane was quickly followed by needing a walker. He now struggled to use a walker and we’d started looking at electric wheelchairs. He’d lost dexterity in his hands and was having a hard time feeding, clothing and cleaning himself. I remember on the airplane, him taking a minute or two to plug in some headphones. The lady sitting next to him was looking out of the corner of her eye, feeling badly as she watched him struggle. I eventually had to step in, although I’d try to hold off as much as possible in situations like this. His pride intact, he accepted help when absolutely necessary but also wanted to keep doing all he could for himself while he was still able.

Another vivid story from that trip. Dad didn’t want to be pushed around in a wheelchair at the tournament. It would have been difficult, especially when going off the path and onto the dirt and grass. And he still wanted autonomy whenever possible. So, we rented him an electric scooter that he could steer and control the speed. That scooter scared the heck out of me. Again, he was losing dexterity in his hands. The scooter would go faster than I was comfortable with. He’d squeeze the accelerator while I speed-walked beside him, ready to pull his hand off the button as needed. One time, he got away from me. It’s one of the closest things to a miracle I’ve ever witnessed. The heavy scooter along with all 200+ pounds of him plowed into the ankles of an unsuspecting older lady. Stunned, she proceeded to stand up and brush herself off, reassuring us that she was ok. She started walking away while we apologized profusely, insisting she wait for a medic to come take a look at her. Dad was much more careful after that.

The event organizers (the USGA) heard our story. They reached out and asked if we’d film an interview. They also asked if we could quickly get them some pictures so they could put together a segment. They aired it during the broadcast. You can watch it here. It was a difficult but truly special week.

I spent plenty of time that year with dad, but conversations stayed surface level. I’ve made peace with that. There wasn’t anything big that needed to be discussed. There weren’t relational wounds that needed healing. Some men live in their father’s shadow, and it’s hard to escape until he’s gone. That never described me. We were too different. He had basic ambitions, and he always seemed content with the small things. He was a simple man and a good dad. He was always there for us. He played with us. He coached us. What we lacked in terms of meaningful conversation, he made up for with presence. He improved on what he experienced from his own father. He’d grown up on a Dutch dairy farm and a strong work ethic was required of him at an early age. He passed that along to his boys. I don’t think that going to college ever crossed his mind. He worked his way through a blue collar career. After losing his job in Oregon, our family moved to Idaho to be closer to my mom’s family. That first summer, he mowed lawns out of the back of an orange Volvo.

While helping him mow one Saturday, I clogged a lawn mower with wet grass. He noticed the mess of grass clumps it was leaving behind as I was too impatient to stop and clear the clog. Putting down the trimmer, he walked towards me, raising a hand for me to stop and turn off the blade so he could clear the clog. But he didn’t wait long enough. After taking off the grass catcher, he stuck his hand down the chute while the blade was still slowing down. I heard a chopping sound, followed by gasp. It was a sound I’d never heard my dad make before. They never reattached that index finger but it didn’t take long for him to get used to the stump that was left.

My brother and I would help him with lawns and landscaping in the summers. It was seasonal work, which meant that each winter, he’d look for a temporary job to get him to spring. One winter, he got a job at the local sugar factory, which turned into a full time job for over a decade, allowing him to quit the summer work for good. I’ll never forget the day I got that call. Dad’s job at the factory wasn’t overly physically demanding. Before getting sick, he said he couldn’t imagine retiring. They were probably going to have to tell him that he just couldn’t come in anymore. That happened far sooner than he'd envisioned. After getting dropped off one morning for his day shift (he couldn’t safely drive anymore), the supervisor saw how he struggled to climb the stairs. He had to pull Dad aside and tell him to go home. He called for us to come pick him up.

As summer turned to fall, things continued a steady decline. In October, we decided to go to Nashville to visit my brother's family. It would be our last trip all together.

By November, each day was simply difficult. Dad had lost most of his quality of life. He was confined to a wheelchair, unable to do anything for himself and struggled to communicate well enough for us to understand. My prayers shifted. Instead of praying for more time, I prayed that we all could endure whatever time was left. Dad would get upset when we’d talk about the disease. To this day, I’m not sure if he was in denial and really didn’t believe he was going to die or if he knew and had his reasons for never acknowledging it.

Mom and I had a morning routine—getting dad out of bed, transferring to the toilet, then cleaning him up, getting him into fresh clothes, and getting him fed. He’d lost over 50lbs as his appetite waned and his muscles atrophied, but at six foot, six inches tall and still nearly 200lbs, moving him was an ordeal. One morning I plopped him onto the toilet a little too hard. The back of the toilet cracked, sending water all over the bathroom floor. I think I saw him laugh a little right as it was happening. After I got the water shut off, I took a minute to find the humor in the moment as well.

Mom was in the process of retiring and I had to work during the weekdays. Brittany would take turns sitting with him along with aunts and uncles so Mom could have a break. I’m not sure how much it all affected him mentally. There’s data showing that in certain cases, the disease can cause some mental decline. I’m unsure whether it was the disease itself or whether it was having to mentally endure a steady, daily decline, knowing that every little thing that he could no longer do would be something that he’d never get back. Some evenings, Dad would take it out on Mom. On more than one night, I’d wake up to him having an episode, needing to go and pray with him to calm him down. I’d get angry with him, seeing how hard it was on Mom. Those feelings turned into resentment. My grandma and his siblings came and visited from Oregon. Again, by that point he struggled to communicate, yet he made it known how unhappy he was. He lashed out when we’d try to talk about the reality of the situation. I told myself that if and when I’m in his position, I’d try to also empathize with how this ordeal was impacting everyone around me. I’d take every opportunity to have meaningful conversations and create memories. But all those expectations weren’t fair. Who was I to think I had any idea what he was going through? My brief resentment turned into guilt for having those thoughts in the first place.

It was getting difficult for Dad to chew and swallow. We started seriously considering the path that lay ahead. Decisions needed to be made about a feeding tube and eventually, a ventilator once his breathing would start giving out. We wanted him to have a voice in the decisions, but he wanted none of it. Things went downhill fast enough that those decisions never needed to be made. On Thanksgiving, he had abdominal pain and we took him to the hospital. A case of constipation led to his body completely shutting down. He came home and was on hospice that last week. We gathered around him during those final days while he drifted in and out of consciousness, his breathing slowly giving out. He died a couple weeks before Christmas, surrounded by family, a couple months shy of his 60th birthday.

I once heard a man say that he aspired to be the strongest man at his dad’s funeral. That resonated with me. It wasn’t about suppressing grief or emotion. I made space for that. Instead, it was about carrying the weight of responsibility in the moment. It was about being someone that others could lean on, especially Mom. Little did I know, Mom would be one of the strongest people in the service that day. I don’t think I’ve ever seen a widow stand up front and speak at her husband’s funeral. Especially not with as much poise and dignity as she did.

Grief is a funny thing. No one knows how to act around you. And at times, you wonder how you should be acting. Everyone handles it differently. After crying hard the day that the diagnosis was confirmed, I had a hard time crying again until one day I thought about how my youngest two will never remember “Paka”. After he died, I’d sometimes wonder whether I’d cried enough or whether I was suppressing any of my emotions. But questioning myself just added another level of complication. I’ve processed it in my own way and now writing and sharing all of this finally feels right.

Life moved on, as it tends to. Early the next year we found our hobby farm. That had been the plan when we first put our house up for sale, before changing plans to take care of Dad. There was even a corner of the farm ready for Mom to build her house and be close to us. Time heals wounds and can help make sense of the complicated feelings and conflicting emotions that come with end of life situations.

My biggest takeaway? Life and death are messy. We like for the story to be neat and simple. Even when dealing with the ugliness of death, we want to say that the process always brought us together and we made sure to find the beauty in the short time we had left together. On the whole, this is true. But there were also plenty of days that were legitimately ugly, and toward the end, it was hard to pray for healing instead of quietly hoping the end would be near, both for his sake and for my Mom’s. There’s no perfect scenario. Sudden death robs everyone of the opportunity to cherish the final days and say goodbyes. Extended sickness creates opportunities for final connection while taking a progressive toll on everyone.

In the end, that year brought the family closer together. We had plenty of time to make memories and say our goodbyes. And as difficult as death is, when you have faith and hope in what awaits, it’s much easier to rejoice at the relief that death provides and the joy that lies ahead in eternity.

I’ve hesitated writing and sharing certain details. But more recently, I started talking about it with other guys. Opening up about all of it has been good for me and, I’ve heard, helpful for others. The older we get, the more we’ll each experience deep loss. If you don’t have it already, find your brotherhood. Find at least one guy that you can be real with. Someone you can share the honest highs and lows of life. There’s power in processing together. Thanks for giving me that opportunity here.

-Andrew