The Mourning Year

It’s been a year today since my dad died. He was 91 and had been frail, but when death came for him, it moved swiftly. He went from tired but conversant to taking his last gasp in three days. For those days, I moved myself into his room at the care home and didn’t leave his side—I was afraid that, like his mother had done 25 years ago, he would sneak away forever while I went home to shower. 

 It seems like a ridiculous thought now, but I was amazed at the depth of the loss I felt when my father died. The only other major loss I had experienced was a deeply tragic one, a best friend taken violently in an international incident, way too young. So I had told myself for years that losing an elderly parent could not possibly be as bad. That I would be able to float by on the fact that he had led a big, long, joyful life. That he had told me a million times in his later years, “When I die, don’t cry. I’ve had the best life possible. If I were writing my autobiography, I’d title it Call Me Lucky.”

 But it didn’t matter what he said. The grief came heart-piercingly hard, the moment he drew his dramatic last breath. I felt unmoored, displaced, alien. I had to reimagine my identity completely. If I don’t have a dad, who am I?  

***

Everyone always says the first year is the hardest. Having been through a hard loss before, I know this to be true for me. Thanksgiving, Christmas, birthday, and then that inevitable day where it has suddenly--and finally--been a year.  

Over the holidays, I muddled through. Big family get togethers were still not really a thing as the dregs of Covid raked their way through the world. Somehow, the small triad of me and my kiddos protected me more than a huge family gathering would have.

His birthday was a different story. I felt grief all day, even though he’d never been a huge birthday guy.  Maybe because the holidays were about family, but his birthday was only about him. On that day, I felt this implacable longing to sing to him, bring him chocolate cake (his favorite), and make him wear a silly hat (my favorite). Of course, I couldn’t do it. I’d never do it again.  

***

 A strange thing happened when I got in the car to drive away from the care home where he had, only hours before, died. I felt elated. Well, not quite that. I felt the full burden of watching him fall apart and lose himself in the depths of dementia lift off of me. And in that unburdening, I felt something akin to elation. Maybe it was relief. That wherever he was, he was him again. And not falling apart. I got on my usual route home, I turned on a very dramatic rendition of Beyonce’s Survivor at practically full volume, and I let my car fly way too fast down the empty 71. My whole life, my dad’s greatest exhortation to me whenever things got rough was always, “Malia, you’re a survivor. You’ll find a way through this.” 

***

Over the next weeks, as my brain began to reflect and make more sense of his later life, I felt outrage at the absolute insidiousness of dementia. It had started out as merely annoying; small acts with larger consequences like the time he accidentally left his bathroom sink running with the drain plugged, and flooded his bedroom. 

 Soon, it presented as defiance. Even though there were small dents all over his car and logic dictated his eyesight and reaction time no longer made it safe for him to drive, he denied reality and kept driving. Then when he failed a driver’s safety test he had offered to take, he grudgingly gave up the keys while claiming, Trump-like, that the test was rigged. Maybe this defiance was the last of his true Self fighting the chaos and fog that was overtaking his brain. Maybe he clung to his car because it was his last symbol of freedom and normalcy and somewhere, down inside his gut, he knew it. 

The disease went through many other phases over almost nine years: Sexheimer’s, where he kept making indecent proposals to his caregivers. A short stint of paranoid delusion, where he called my godfather Jim and told him I was trying to take all his money. And then a fixation phase where he wanted, no needed, MSNBC on all day long with no gaps. If you tried to change the channel or if you turned off the TV while he was dozing, he would rouse and freak out that it wasn’t on. 

 In the final months of his life, as Covid raged outside his care home, he was anxious. I was the only one he would calm down for. Otherwise, he rang his bell all day long and the staff started not coming in every time he rang. This led to accidents. He couldn’t walk but forgot he couldn’t walk. A few falls out of his bed led to some scary, awful incidents, like a terrible scalp laceration and probable concussion. If he had been compos mentis then, he would’ve joked that he felt sorry for the floor, hard-headed Scot that he was.

***

 My dad was a huge proponent of assisted suicide. And he always said, from his 70s onward, that if there was no one to help, he would do it himself. He would tell me fairly regularly, “Honey, as soon as I can’t walk, talk, or wipe my own ass—whichever comes first—I’m outta here. No regrets. Just be ready, and don’t be sad.” The book Final Exit stood forebodingly on his shelf for years, as if to bear him out. 

But herein lies the rub of dementia. Often, by the time they reach these milestones, they are too far gone to do anything about it. Not long before he died, he was incontinent of bowel and bladder. He barely spoke. He was bedridden, staring at MSNBC all day long vacantly. It was excruciating to watch. All the markers he had set down so determinedly years ago, he had flown right by without another look. 

 And I knew it would happen that way. Earlier in his disease, when he began to need help in the shower and became incontinent of bladder, he had accepted so easily wearing a diaper and sitting in the shower while someone else washed him. In some ways, I found this disturbing; I knew he was careening toward his life-ending milestones. But in another very real way, I began to see the beauty of this phase of dementia as well. My father became accepting and content. He found joy in the simplest things: singing old songs, downing chocolate shakes, looking at family pictures, and making me laugh with his corny old jokes and stories. 

 It forced me to re-assess too. I had been anxious over where dad was heading and eating myself up with the thought that the disease was forcing him to compromise his quality of life values. Should I bring up his end-of-life plans, or rather his plans to end his own life? If I did, was I willing to help him? I’ll admit, I was too compassionate and/or cowardly to do either. 

As his only child and caregiver, I learned so much about redefining quality of life from this phase. He had become like a Zen master. He was unruffled by most things. And he was not afraid of the indignities of aging or the big black question mark of death. In fact, he didn’t even know he had dementia. My new definition of life quality was distilled to this: His life had purpose and worth because he could still give and receive joy.

***

For years, when I’d walk into his room, Dad would look at me mischievously and say, “Now who are you again?” and then he’d crack up. And I’d say, “Daddy, don’t say that! What if someday you really can’t remember me?!” and he’d contritely apologize and assure me that no matter what, he would. 

And, stunningly, for all the ways that horrendous disease stole and ruined my dad, for all the pain he suffered and all the indignities he endured, for all the pieces of his life and heart and memory he lost, he kept his promise. He didn’t forget my name. He loved me in the most important way he still could until the day he died. 

 I miss him. And I cling hard to his final gift.