My girlfriend was diagnosed with early-onset dementia. I didn't think it could get this bad
It started off small. My girlfriend Steph would forget little details, things we’d brought up in conversation before. She’d repeat her thoughts or ask me the same questions over and over again. When she started to forget what she was doing or why she was doing something, I convinced her to go to the doctor. She was embarrassed and didn't want to admit it, but even she knew something was wrong. The doctors said it was early-onset dementia.
I think Steph was scared that I was going to leave her after she got diagnosed. We were still young and she knew that I still had a whole life ahead of me. She never said it out loud but I could see it in her behavior. She might not have remembered her diagnosis, but she could tell that she was losing herself, that something wasn’t quite right. She’d spend nights sobbing in my arms about how she felt different, empty.
I’ll never forget the way she described it. “It’s like someone else is living my life and I have no clue what they do.”
That’s when she began to push people away. Friends, family, pretty much anybody but me. Instead of working, reading or painting like she used to, she’d remain curled up in bed glued to her phone.
For a while, it was fine. She was going through a hard time and I loved her. I wanted Steph to know that I wasn’t going anywhere. After all, she was my girlfriend. When the doctor said there would be personality changes, it was fine. I thought that no matter how she changed, she would still be the Steph I fell in love with, that I would be able to see her true self even as things got worse.
The real problems started a few months ago shortly after I got home from work. I’d just started preparing dinner when I got a text from Steph.
**“Come upstairs.”**
I turned off the stove, realizing that I hadn’t checked up on her as soon as I arrived home. It had been a long day at work and my mind was preoccupied. Drying my hands, I headed up to our bedroom, where I could usually find her.
“Hey babe. What’s up?” I asked. But Steph wasn’t there.
I searched around the room. I checked under the bed, in the closest, in the bathroom. But she was nowhere to be seen
**“Where r u?”** I texted back. It showed that she read the message but she didn't respond.
I checked her location on my phone, slightly concerned that she might have left the house. Once she’d been diagnosed, I made sure that I’d be able to see where she was at all times. Steph resisted initially, but deep down I think she knew it was for her own wellbeing. I spent the next few minutes searching around upstairs for her, but when I could no longer find her, I returned to the kitchen. Wherever she was, she would come out eventually.
I froze. The stovetop was on again. I distinctly remembered turning it off.
“Steph?” I called out. She must have been here. Who else would have turned the stove on?
But I heard nothing in response. I pulled my phone out again, zooming in closer on her location. Our icons were nearly overlapping. She couldn’t have been more than a few feet away. I called out her name again but still I heard nothing. That’s when I began frantically searching for her. Maybe she left the house and forgot her phone? That would be even worse. She’d have no way of calling for help. If I could just find her phone, then maybe I could track her down from there. I decided to call her, just to see where it was.
That’s when I heard the familiar tune coming from inside one of our cabinets, the one right next to our sink. *What is she doing leaving it there?*
I froze. When I swung the cabinet door open, I was expecting to see the phone there. I thought maybe it’d be sitting on the bottom with all the old sponges and cleaning supplies. I was *not* expecting to see Steph crammed inside the cabinet, all her limbs at odd angles. Her body was knotted and twisted in ways I’d never seen before.
“Hi James,” Steph breathed out. It almost sounded like she was *excited* I found her. Like it was some sort of game. Her glassy eyes stared past me, something she’d been doing much more frequently whenever she spoke to me. Her lips were upturned into a subtle smile.
I was too baffled to move. Steph should not have been able to contort like this. Any grown adult would have been far too big to fit into a space like that. Yet, she showed no signs of pain, only enjoyment.
I rushed forward, cupping her cheeks in my hands. Her head was bent at an odd angle and a line of drool ran down her face. I quickly wiped it away.
“Steph, what are you doing in there? Let’s get you out.” I reached for her arm as I guided her out of the cabinet, trying to hide the fear in my voice. Steph didn’t protest as I worked her from the space, slowly undoing limb after limb. As we made progress, I could hear the cracks in her body from sitting uncomfortably for so long. But Steph didn’t show any pain or emotion. This was worse that I thought. I’d have to call Dr. Yoshihara tonight about updating her prescription.
I didn’t say anything about how dangerous Steph was being, about how she could hurt herself. I was too horrified to speak, but Steph broke the silence first.
“What’s for dinner?” Her tone was so casual that it caught me off guard. It was as if nothing abnormal had even happened. Maybe she didn’t remember.
“I was going to make some chicken alfredo, your favorite. Why don’t you sit down on the couch for a bit? I can light up the fireplace so you’re nice and cozy. A change of scenery from the bedroom might be nice.” I didn’t include that I wanted to keep an eye on her as well.
Steph nodded and moved towards the couch. She grabbed one of the pillows, taking her seat in *my* spot. It was such a small detail, but it hit me like a truck. Steph’s favorite spot on the couch was the rightmost part. She always said that it was more comfortable, that the stuffing of the cushions was softer there. She knew that I preferred the right-hand side, and they eventually ended up being our assigned sections of the couch. It was the first time I’d seen her sit on my side.
I told myself it didn’t matter, but it felt wrong. Steph *loved* the other side.
“Steph, honey. Why don’t you sit on the other side of the couch? You always said you preferred it.”
“I like this side,” she responded. Her eyes followed me, but I could see that she was looking past me.
I didn’t protest.
It wasn’t until a few weeks later when I was sitting on the porch, reading a book with Steph when it happened again. Once Dr. Yoshihara adjusted her medication, I figured things would be better. It was a beautiful, sunny day out and I’d poured us both glasses of lemonade to sip on while I read one of her favorite novels to her.
About fifteen minutes in, Steph abruptly got up and walked into the house without saying a word. I figured she was going to use the bathroom and decided to stay where I was to soak up a little more sun. About a minute went by before I received a text from her.
**“Can you come help me with something?”**
I closed my book and immediately went inside. The house was silent. *Maybe she’s in the bathroom?* But when I checked, it was empty.
**“Where are you?”** I texted back.
**“Come find me.”**
My mind flashed back to the incident that occurred a few weeks ago. I thought of her knotted body inside the cabinet. No, Dr. Yoshihara upped her dosage. There’s no way it could happen twice… right? But my gut told me otherwise.
I began searching through every hiding spot I could imagine. I was beginning to give up. I swear I had searched the entire house, going through closets, cabinets, even under the bed. I was rooting through the linen closet when I heard a giggle from downstairs. It was soft. It sounded like Steph’s old laugh. A door slammed shut.
I whipped my head around and raced downstairs. My heart thumped as I once again thought of her crammed into the cabinet. This game was too dangerous to keep playing. It was only when I entered the kitchen that I saw it. The oven was on.
My breath hitched in my throat as I made a beeline towards it. I knew I was going fast, but it was as if time had warped every moment so that seconds felt like minutes. Please. Please don’t let Steph be in there.
My slick hands reached for the handle, yanking the oven door open as a warm blast of air met my face. And there she was, limbs tangled once again to fit inside the oven. I let out a yelp. There was no way she was able to do this alone.
Steph’s empty gaze once again met mine, a small smile on her face. She showed no signs of discomfort at the heat or her contortion. Her voice held a surprising amount of clarity for someone who was in a space they shouldn’t have been able to fit in. “You found me.”
“Steph, what the hell are you doing in there?” I reached up to turn the oven off before turning my attention back to my girlfriend. Her eyes, once so beautiful to me, now looked empty.
One of her legs was wrapped around the base of her neck while her toes jutted out at strange angles. Her arms disappeared between the mess of legs and torso her body had become. She was completely folded over. Twice. Even a contortionist of Steph’s size shouldn’t be able to fit in there. How on earth did she do it?
I tried to undo her tangled limbs, but there wasn't enough room. I would have to pull her out of the oven first. Oh god, I couldn’t do that. I thought of her skin scraping against the metal rack; it was going to hurt.
I didn’t sign up to get my girlfriend out of a hot oven. The Steph I knew a year ago never would have done this. Who has she become?
But there was no time to hesitate. I slowly pulled her out, making sure that I was handling her gently. But that same smile remained plastered on her face. With cracking joints that sent my heart racing, she began undoing the knots she had folded herself into as I pulled her out.
I wanted to vomit.
That night, I called Dr. Yoshihara and described the incident in detail. I hated that I was talking to Steph’s doctor behind her back, but this wasn’t normal. It was dangerous. And fucking terrifying. But deep down inside, it wasn't just about Steph. I needed someone else to hear this madness.
“I can tell this is taking a huge toll on you, James,” Dr. Yoshihara said.
“I just don’t know what to do. I don’t want Steph to hurt herself but I can’t watch over her every second.”
“Maybe it’s time to consider getting some external support? Just hearing about these incidents makes me think that her mental capabilities have declined significantly. It may be outside of your ability to continue caring for her.”
Her offer sounded tempting. I loved Steph, but it was exhausting having to reexplain things to her constantly, to watch her every move and tell her what she liked and didn’t like. I didn’t want to remind her of who she was anymore. It felt like I was begging for the old Steph to come back. But she was dead. Long gone. Once she’d been diagnosed, Steph made me promise that I would take care of her, that she wouldn’t end up in the hands of strangers or in a home. She’d read stories online about how they could abuse their patients. It scared her. I owed it to Steph to respect her wishes for as long as I possibly could. It’s what the old her would have wanted.
“I’m sorry, doctor. I promised her I wouldn’t.”
“I understand. You’re a good boyfriend for respecting her wishes, but if it gets out of hand, there’s resources available. Bring her into the office and we’ll run a few more tests, but I can’t say that much can be done about this sort of behavior without professionals.”
Over the next few months, I began to keep a closer eye on Steph. Her disappearances became more frequent. Whenever she could, Steph would slip out of my sight and send me a message prompting me to find her. She preferred small spaces, the smaller, the better. I’d catch her trying to climb into the vents, sinks, even the laundry machine one time. Each find was more terrifying than the last, not because of where she was hiding, but because of what could have happened. Her luck would run out eventually and one wrong move would leave her dead. Maybe she’d cut herself, or break a rib by hiding in a place too small and puncture her lung. I didn’t know what was coming, but I knew it was getting out of control.
It felt like I was betraying her when I finally decided to reach out to assisted living facilities. But I’d done everything in my power to keep her safe and I just couldn’t take it anymore. I was exhausted. I knew I would be giving up a portion of my life to take care of Steph when she was diagnosed, but it was taking a huge toll on me. I was fired when I could no longer go to the office to work. I never called my parents and I’d decline invitations to go out with friends. I couldn't sleep without waking up to see if Steph was still beside me. Every moment of my life revolved around making sure that Steph wouldn’t hurt herself, ultimately distancing me from the people I needed most.
It was a humid Summer day when Steph went missing. I had spent all day looking at different facilities, trying to find the perfect place for her. One place in particular piqued my interest. It was close to here, the building looked clean and well-maintained, and there were professionals on standby 24/7. I’d given them a call during the day but they hadn’t picked up.
That night, Steph and I ate dinner in silence. She would barely eat. I’d made chicken alfredo again, hoping it would spark her appetite. But I don’t think she liked it anymore. I watched as she took slow bites, a vacant expression on her face as she chewed. Steph used to devour this dish when we first started dating. She always said that it tasted better than any restaurant’s and I’d respond that it was because it was made with extra love.
I was just about to ask her how the food was when my phone rang. It was the facility I’d called earlier. I excused myself from the table and stepped out onto the patio, making sure that I could still see her through the windows as I picked up the call.
I explained the situation to them and inquired about the pricing. I swear I didn’t look away for more than a few seconds, but when I looked up again, Steph was no longer sitting at the dinner table. Terrified, I hung up quickly, saying I’d call them back as soon as I dealt with an urgent matter.
My phone dinged.
**“Come find me.”**
I scoured the entire house multiple times. Calls and texts stopped going though and I could no longer see her location on my phone. After I spent hours looking through every crack and crevice in the building, I finally decided to call the police.
They checked every inch of the house from top to bottom. They searched all of the spots she used to visit before she was diagnosed with dementia, even her childhood home. But nobody was able to find her.
Friends and family joined in on the search, just as distraught as I was. I never had the heart to tell anybody outside of the police about the places she’d been hiding before she went missing. I knew it was an important detail, but I wanted her to be remembered as the beautiful Steph that I had fallen in love with, not an empty shell that liked to twist her way into dangerous places.
It’s been around two weeks since Steph went missing and a weird stench has begun to permeate through the house, like rotten meat. Ever since the smell got worse, I haven’t been able to bring myself to find her. I knew she was here, inside the house because Steph refused to leave as her condition worsened. I knew she was in the living room, because that’s where it smelled the worst. And now I know she’s in the chimney, because that's where the maggots keep coming from. Nobody ever checked the chimney. But I’m scared, too scared to see the infested remains of the person I once loved more than anything in the world. I’m too scared to think about what was going through her mind as she decided to stay there until her last breath. And I’m even more scared now, after receiving a text from her.