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Friday, July 17, 2020

‘Relic’ and My Experience With the True Horrors of Dementia

When my father died from complications of Alzheimer’s in 2011, movies dealing with dementia became bitter pills to swallow. The pain of having to watch a loved one slowly deteriorate into a shell of the person you used to know is unlike any other pain I’ve experienced so far in life. The crippling anxiety of never knowing “who” you’ll be dealing with when you walk through the door. The guilt of the purposeful avoidance when you feel like you just can’t bear witness to the decline anymore. The fear of losing another piece of the person as each new day passes. I consider it to be a true horror that has touched, and will touch, far too many lives.

If I had to give my feelings and experience with Alzheimer’s a physical representation, it could all be summed up with Natalie Erika James‘s new horror movie Relic. It’s a raw and heartbreaking story about what it feels like to lose a loved one long before they’ve passed from this world. And like in real life, there is no happy ending.

Relic tells the story of Kay, a woman whose mother, Edna (Robyn Nevin), is battling dementia. When Edna mysteriously goes missing, Kay (Emily Mortimer) and her daughter Sam (Bella Heathcote) embark on a journey that will change their lives forever.

When Sam and Kay reach Edna’s house, Edna is nowhere to be found, but signs of her remain. Candle carvings, which appear to be a hobby of Edna’s, sit in progress, as if Edna has just picked up and disappeared on a whim. The once fresh fruit on the counter has now withered and grown moldy. Post-It notes a forgetful Edna has left for herself are littered all over the house. A pile of blankets on Edna’s bed, resembling perhaps a body, scare the duo into believing their loved one has died.

But Edna has not died. She returns a few days later, without answers.

And somehow different.

As we watch the rapid deterioration of Edna, what we also begin to witness is a deterioration of the family as a whole. Edna is changing; slipping away from the family she once knew and loved. And no matter how hard Kay and Sam fight, with the disease or with Edna, they will inevitably lose her in the end.

This is the tragedy of the disease. It steals the person you love, one memory and shared experience at a time. While everyone experiences dementia differently, for some, the painful and gradual process of the disease slowly transforms them into someone you no longer recognize. As was the case with the fictional Edna, and my own father, this sickening process turns a once vibrant and loving person into an angry, cruel and sometimes even violent shell of the person you used to know.

In Relic, we experience this transformation when Kay follows after her mother into a labyrinth of hallways and corridors locked within a forbidden closet. This is Edna’s hell. A metaphor for the disease, these hallways serve as a trap, where Edna is literally chasing shadows. But when all three women in this family find themselves trapped in this hell, they bear witness to an unimaginable horror as Edna lashes out at Kay and Sam and begins attacking them. Edna, her body showing severe signs of decay and disease, has become a literal monster.

But make no mistake. The monster here is the dementia, not Edna herself. It has finally taken hold of her and consumed her mind, body and soul completely, leaving only devastation in its wake. Much like it did to my father.

My father was diagnosed with early onset Alzheimer’s in 2004 at the age of 61. I was already living on my own by then, trying to establish a life for myself. My parents, who were blind my entire life, managed pretty well on their own after I moved out of the house, but still needed my help with bills and other chores once a week. It was shortly before his diagnosis that my mother started telling me about weird things my father had been doing. Moving furniture into obscure places throughout the house. Accusing the neighbors of trespassing in the backyard. Swearing he was in one room when he was actually in another. When I confronted him about this, he blew it off as nonsense.

After insisting he see a doctor, we received the devastating diagnosis none of us saw coming. My father, one of the smartest men I knew and a man who had spent his entire life as a programmer, had dementia. For months I refused to believe it. It’s gotta be a mistake. There’s no way this could be happening to my dad. It wasn’t until the disease really took hold of him that I came face to face with what I ultimately feared. I was losing my father in the slowest, most painful way imaginable.

I remember the first time I visited an assisted living facility for a tour. I was scared, and I didn’t want to be there. I knew that my father needed help, but I just didn’t feel like he needed to be in a place like that. Not yet. I remember sobbing in my car after the tour, struggling to come to terms with what needed to be done versus what I wanted to do. Much like Kay in Relic, I convinced myself that he wasn’t that bad, and he could continue to live independently with my mother for a few more years. I had no idea how wrong I was.

When my father started his deepest descent into madness, he started accusing us of various, outrageous things. He became very paranoid that people were entering the house at night and stealing things. It all came to a head in July of 2008 when he threatened to kill my mother, confusing her for an intruder. Unable to make him understand who she was, she fled the house in a panic and called me from my uncle’s house. By the time my brother and I arrived, my father had barricaded himself in the house with a knife, convinced “they” were coming to get him. My brother, with the help of the local police, managed to get into the house and wrestle the knife out of his hands before he could hurt himself or others. A true role reversal of the parent-child relationship. It’s a moment that still weighs heavily on my brother to this day.

Later that night, I drove to the hospital to formally take Power of Attorney over my father, and commit him involuntarily to the mental ward.

This was the day the man I knew as my father had died. Figuratively speaking, of course.

My dad was not a monster. Like Edna in Relic, he was battling a sinister disease that ate away at the layers of his humanity right before our eyes. My father had always been a kind soul with an exceedingly generous heart. He loved my mother more than life itself, and would’ve done anything in his power to protect her under normal circumstances. He loved showering her with gifts on her birthday. Playing guitar for her on the back porch on warm summer nights. He lived his life for her, and for his family.

What happened that day was a betrayal to the kind of man he was for most of his life. His dementia had finally gained the upper hand, snatching him right out from under us. This was not the life he should have been given. He deserved a nice, happy life, where he could live out his days in peace with the woman he loved.

But that’s not what he got.

After I committed my father to the mental ward, I remember sobbing for what felt like an eternity. I couldn’t believe what I had done. I told myself it was for my mother’s safety. But no matter how I tried to rationalize it, the guilt never lessened. It wasn’t until the following Monday that I received a call from my father while at work, and I received confirmation that I was, in fact, the worst daughter in the world. In the most heartbreaking moment of clarity and tone of disappointment, he simply said: “You’ve sentenced me to die, Kim.”

I begged him to see reason, but he had already hung up on me. I spent the rest of the afternoon quietly weeping in my cubicle as I tried to finish out the workday.

Over the next few days, it was up to me to find a place for my father to live. Social workers had intervened and said under no uncertain terms that my father was to never return home again due to his extreme paranoia. During a time when I thought I had zero strength left, I visited as many assisted living facilities in the area as I could to find a place that would be able to cater to his needs. When I signed my name on the dotted line, I felt an overwhelming sense of betrayal and guilt that still lives with me today. I did what I thought was best for both of my parents, knowing it was ultimately against my father’s wishes.

In the years that followed, I found myself trapped in this emotional maze of anger, guilt, fear, sadness, confusion and devastation. Much like Sam and Kay racing around the endless hallways and corridors of their own personal hell, I too was looking for an escape. But it paled in comparison to what my father was experiencing.

In the months leading up to his death, he began forgetting us completely. He forgot my mother, with whom he shared a wonderful life for over 40 years. He forgot my brother. And towards the very end of his verbal days, he forgot me. Unable to communicate with us when we visited, we just sat at his bedside and talked about normal things so he could hear our voices. The week my father died, I made it a point to visit him all by myself for the first time. I knew he wouldn’t be able to communicate with me, but I had some things I needed to say without anyone else being around.

Among other things, I told him that I was sorry for what I did. That I never meant to cause him any pain. That I loved him, even when he hated me, and that it was okay if he was still angry. As I took his hand and squeezed it, I told him I loved him one last time. In a moment that feels in hindsight like something straight out of a Hallmark movie, he stirred and muttered weakly the last words he’d ever say: “I love you too.”

In Relic’s final scene, we are subjected to a similar moment that is painful, yet somehow tender. As Kay’s character arc comes to completion, she has chosen to stay with her dying, monster of a mother, despite all that has happened. She understands that while Edna has turned into something she no longer recognizes, somewhere inside is still the woman she knew and loved. The woman that raised her. Kay lovingly disrobes her mother from not only her clothes, but her decaying flesh, revealing the truth of what is under all that festering pain: a woman being tortured by an invisible monster. It is a touching moment, even if it is unpleasant to watch.

My father died peacefully a couple days after our final goodbye, on September 23rd, 2011. When I got the call, I remember crying, but not in the hysterical way I imagined. The man I knew died long before that day. I had already been grieving for 7 years. He slipped away from us day by day, one piece at a time. And that’s the true horror of this disease, which is so beautifully captured in Relic. It’s ugly. It’s raw. It’s painful. But even in the scariest of moments, love and peace can be found. And maybe even forgiveness.


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