Our Love Story, Part 25: The End of All Things

My intention is to write this until it’s done. I don’t know how long it will be. I have an idea of how hard it will be to write.

As I’ve said before, I am writing about the end of Julienne’s life because I need to, for a couple of reasons. One of them is for me. I’ve thought about these days, these moments, every day for a year now. The pain, the heartbreak, the quiet moments, all of them, every day. I’ve thought about writing this for a long time, just to get it out of me and onto “paper”, a way to let the pressure off of my soul, just for a little while. I have no illusions about how long any relief this act brings will last. But any relief is welcome.

The other reason is because I believe Julienne would want the truth of her story told, all the way to the bitter end. For a time, some months before August, she’d become obsessed with the facts of how she might die. She knew in the end that it would be cancer, of course, barring any kind of unforeseen accident. But what shape would it take? That question consumed her. She assumed it would be one of her major organs failing, but which, and what was dying from that like? Most of the people that she knew with cancer seemed fine, then fell out of contact for a few weeks, and she would find out they were gone. Each was a hammerblow to her. Death was mystery enough, but she had no idea what her final days could be like.

I told her about my mother, who died from breast cancer officially but kidney failure specifically. She wanted to know about the other ways. One day during this time, we had an appointment with our oncologist. Julienne was going to ask that question. She wanted to know the truth. We went through the appointment, doing all of our normal discussions about test results and plans and next steps. At the end, I waited for her questions. They didn’t come. As soon as we left the room, she told me that she decided that it didn’t matter. She was only going to die one way, and there was no need to fear dying all of the ways possible. Instead, she learned about what lung failure was like, since that was the most likely scenario. She talked to people about that, especially the palliative care team, and was told how it would generally go. She was content with knowing that, and their promises that they could keep it under control and that it wouldn’t be painful.

In the movies, the pamphlets, the brochures, books, everything, a cancer death typically is the same. The person is in bed at a slight incline. The sheets and blanket are turned down and rest just above the waist. The patient’s hands rest on that folded down bit. They sleep a lot, but will occasionally open their eyes and speak softly as heart monitors and machines whir and beep around them. Finally, they shut their eyes for the last time and seem to be at peace. The heart monitor flatlines amid a long machine beeeeeeep that extends into infinity. A somber doctor grasps the patient’s hand, whispers an “I’m sorry” to the bowed heads of the family gathered around, and the scene fades to black.

Julienne knew that was bullshit. The truth is messier, but no one is prepared for it, because it isn’t talked about. It’s sanitized, gauzed over, a hazy filter applied that fuzzes the edges. Julienne detested the lie of it all. The truth is messier, yes, but it is more beautiful, more painful, harder but above all true, a natural progression that literally every living thing has undergone, or will undergo. She preferred the curtain pulled open, the reality of death to be accessible and understood.

Because none of us are getting out of here alive.

***

On Monday, August 5th, Julienne’s father Jay and I sat in her room, waiting for the doctors. Sharon had gone home for some rest after staying up all night with Julienne. After the sun had risen, she’d gotten calmer and a bit less restless, and she was asleep when the doctors came in. There were two, both women, and they greeted us. I asked them if I should wake Julienne, but they didn’t think it was necessary. They were kind, but they were direct. Julienne’s body was failing, they told us. They expected her to be gone by the weekend. They apologized to me and Jay, and they left the room. If it sounds harsh, it was not. We always appreciated the truth directly, told with humanity and kindness but still forthright and unfiltered.

I felt part of me detach at the news, some level of my consciousness or something slipping its tether. I felt like my inner self was floating just above my own head. My limbs still responded to commands, but it was like moving through soft jelly. Everything was a little slower. My ears rung. I went to Jay and hugged him, both of us crying, but quietly. Everything was just out of focus. He left the room to make phone calls, undoubtedly some of the hardest of his life.

I sat back down beside her. A nurse came in and checked on Julienne, apologizing softly to me about the news, and when she left the room I knew I needed to talk to her. I didn’t know what to do, what was supposed to happen next. I had a question, so I floated out of the chair and drifted across to the door. Excuse me, I’m sorry to bother you. Will the doctors be coming back later when she’s awake to tell her?

No, I was told. It would be best if it came from you.

I floated back into the room and settled back in the chair. It would be best. Best for who? I wondered then, and still sometimes wonder. Certainly best for anyone else who might otherwise have to tell her. Telling someone they are going to die soon is a hard, hard thing. I know what they meant when they said that. It was best for Julienne to hear it from someone who loved her more than anything in the world, who knew how to talk to her. Someone she trusted absolutely. And someone to hold her afterwards.

The one person it wasn’t best for was me.

I’d had to give terrible news to Julienne before. The moment I had to tell her that her ovaries were gone, along with the chance for us to have biological children four years before, had left a deep wound in my psyche that never really healed. To be the bearer of that news is a burden that doesn’t go away when the words are spoken. It remains, a splinter of the soul, the knowledge that you are personally responsible for the moment when the pain of the message hits the one you love. The knowledge is the dagger that cuts, but to be the one to wield it, the hand that sinks it in, the scar it leaves is permanent. I will never recover from that moment.

But still. But still. I’m glad that it was me. I, who knew the truth beforehand and had a chance to, if not grasp it, at least have a hand on it, could tell my wife, my love, my partner, the awful, terrible words and then hold her while the knife settled in, my whole being focused on sending love to her in every way I knew how.

I just stared at Julienne, so astoundingly beautiful even after a rough night and the fact that her body was shutting down. I held her hand, her long delicate fingers instinctively curling over mine. I thought about how I would tell her, my brain sluggish and worn down. Her eyes opened before I was ready, although I never would have been, not for this.

She murmured a greeting and I responded. I took a deep breath. Honey, I exhaled, the doctors came in. And I told her.

I held her, and she held me. She cried and I cried, but quietly, tears of exhaustion and the end of hope. There was no anger, no fear, just the silent despondent tears of the defeated.

We talked a little, but mostly held on to each other. Time after that is a little fuzzy. At one point friends came to see her, talking to her and occasionally getting a response and awareness from Julienne, but who was increasingly spending more time with her eyes shut.  There would be times when she would pick up her phone and unlock it, then just stare at it as if she knew it was something important to her but not sure why or what she wanted from it.

At one point, she needed to use the bedside commode. I had everyone leave the room, as usual, then helped her up in our usual manner, her face against mine. As she sat she whispered to me, I don’t remember our nicknames for each other. Tears ran down my face at her words and the sad, tired expression on her face as she tried to remember. Tinúviel, I told her softly, I call you Tinúviel, and you call me Strider. She nodded, but I didn’t see recognition on her face. When she was done, I helped her back into the bed. I sat on the edge as she looked at me, exhausted, and whispered to me, I don’t want to do this anymore. I’m ready when you are.

I cried, holding her hands. There were different ways to take those words, but in that moment I felt like she was asking me if I was ready for her to rest forever. She could have also meant that she wanted to leave Gilchrist and go home, a sentiment she would clearly express later. Either way, my answer was the same. If she wanted to go home, I was ready, and if she was telling me that she would hold on to life until I was ready, I wanted her to know that she could go when she was ready. I didn’t think it was possible for my heart to break more than it already had, but in that moment it did.

Her therapist came by in the evening, the one who’d worked with her over the past year to mentally and emotionally prepare herself for this. Because of her, Julienne had been able to conceive of the reality of death and a possible afterlife in a way that she, as an atheist, could accept and hope for. Her therapist, who is now my therapist, helped her take charge as much as she could by making the plans that she wanted and getting them in place. She had come to say goodbye. It meant a lot to me that she did that.

Not long after, Julienne told the nurse she wanted to go home. They needed to put a line in her with a pump that she could press for additional morphine, which would have to wait until the next day. Her oxygen needs were high, around 13 to 15 liters per minute. Our concentrator at home only went up to 10, but due to a weird insurance mix-up, we had two of them. I knew I could hook up one to her canula and another to the mask. I’d already been taught how to administer liquid morphine and Ativan. I would do everything in my power to make sure that Julienne got exactly what she needed and wanted.

That night, her family came to visit. Her parents, aunt, uncle, cousins, and brother. They brought Spaniel Day Lewis with them as a treat. Sadly, Julienne never was aware of that fact. After the sun went down she wasn’t lucid anymore. She would mostly sit, leaning forward. At times, heartbreakingly, she would sit that way with her hands in her lap, close together and palms up, looking down at them but with her eyes still closed. Her thumbs were moving around oddly, and I couldn’t figure out what it was. Then it hit me. She was using her phone in her dreaming mind, the only link she’d had to the outside world for the last few months. The sight of doing that broke my heart further. The image still haunts me today.

It was hard for her family to see her that way. Most of them left soon after to go to the sitting area. I understood. It’s hard to see someone you love like that, especially when you want to remember them as the vibrant joyful person they were. They talked to her and eventually drifted out one by one. Her cousin Laura stayed. We sat, each on one side of her, and lightly rubbed Julienne’s back and arms. She stayed calm the whole time we did it, and we just sat quietly while we gave Jules as much love as we could that way. It was such a beautiful, wonderful moment in a sea of harsh ones. I will never forget that, either, a bit of light to balance the dark.

That night, Jay and Nathan, her brother, volunteered to watch Julienne so I could rest, as Sharon had done the night before. As with the previous night, it was hard to sleep. She was restless and wanted the mask off her face, and she didn’t usually let her dad or brother put it back. A few times she would get up, her strength surprising and her will to go where she wanted unassailable. There were many times where I scrambled up to help gather her up, get the IV ready, and make sure the oxygen tube let her move freely. Always she went to the cold bathroom.

The next day, Tuesday, August 6th, they got her morphine line installed. Her family arrived to pack everything up. I had her dress, the Getting the Fuck Out of Hospice dress, and helped her into it. She was ready to leave and kept getting up while we waited for the ambulance to arrive, and I’d have to tell her it wasn’t time. She wanted to leave so badly. I just kept talking to her, holding her hands wherever she was, telling her that she’d be home soon. At one point, she became lucid again. She looked at me and was so fucking sad. She leaned her forehead against mine, a thing we did a lot. I just want to not die, she whispered to me, I just want to not die. I could only cry, just like I’m doing now, at the plea in her voice, a plea I couldn’t answer, couldn’t fix, the plea of a beautiful, kind, loving person who just wanted to live, just wanted more time. Somehow, another piece of my heart broke, well beyond when I thought it was possible.

The ambulance finally arrived. The driver and EMT (different ones, as we made very clear) got her onto a gurney. I stayed beside her, holding her hand, as they wheeled her out. I got in the back with her, as I should have before, and held her hand as they took us home. Occasionally Julienne would open her eyes and I’d talk to her, telling her I loved her, that we were almost there, telling her the road we were on. It was thankfully uneventful.

We got her inside and settled into bed. Heather, our hospice nurse, was there. I was given the supplies and instructions I already knew. There was a crowd at the house, too many people, but I was focused on Julienne and for the most part they stayed in the living room while I was in the back with Julienne. I got her oxygen up and running, hit a few snags because the tubes were too long, but Laura stepped up, found out what was needed, and said she’d take care of it. She did, showing up soon after with short tubes that helped deliver more air. The canula and mask combo worked well, since even though Julienne still took the mask off, she left the canula alone so she was at least getting oxygen.

(Side note: I have assembled these memories as best I can in the order they occured as I remember them. They all happened, but they may have happened on Tuesday or Wednesday. I’m doing my best from a time where I’d gotten very little sleep and was running mostly on anxiety and fear.)

The rest of the evening was similar to the previous night. Julienne spent most of her time in a fog, sleeping restlessly and agitated despite the morphine and Ativan. I had things pretty well set, with the tubes in a place where she could reach the bathroom whenever she decided she was going in there. Her morphine pump, though, had to be grabbed every time she suddenly went on the move. We had fans set up to keep her as cool as possible. She was in her bed with her puppies, exactly as she wanted to be.

At one point that evening (or the next – I think it might have been Wednesday night), she got up again and headed out of the room. I had the usual scramble, but this time she didn’t want to go the bathroom. She was heading down the hall. I called for help, and people kept her in place (which did not sit very well with her, thank you very much) while I figured out how in the hell I was going to keep getting her oxygen. Suddenly I remembered the big oxygen tank, the one she’d playfully posed beside like a pinup a couple of weeks before. It was still in the living room. I disconnected the tube that ran to her canula, squeezed past the group in the hall holding my quite peeved wife, and connected it to the oxygen. Freed, Julienne made her way into the living room.

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Forever a goof.

She wanted to sit in her nook.

She sat in her chair, her favorite place in the mornings, where she’d sip tea and look at her phone and pet Lewis, who usually leapt into her lap when she settled in. She loved that spot, accidentally created when we needed room for the Christmas tree, and stayed that way ever afterwards. She looked around, not seeming to comprehend what was happening very well. We got fans set up to keep her cool. At that moment, with her settled, I knelt in front of her and put my head in her lap and cried, hard. I think she put her hands on me, but that could just be wishful thinking. I just remember breaking down for a minute or two.

That night, her mom was going to stay up with her again. I got one of the chairs from the living room and put it beside the bed. Sharon sat there beside her daughter, holding her hand and watching her sleep. I probably drifted off a little from time to time. As we sat watching Julienne, we both heard something over the loud buzz of the fans, the rumbling oxygen concentraotrs, and hiss from her tubes. It was a melodic sound. We both leaned forward to listen, looking at each other in wonder.

Julienne was singing.

It was soft, but she was singing words. Every now and again I could catch a word, and one of those words was mother. Sharon and I sat, transfixed, listening to Julienne sing, one of the great joys of her life. It was like a balm to us both, a comfort in all the terror, a lullaby for us, and especially for her mother, based on what I could hear. It was another of those beautiful moments amid the tragedy and pain. The memory of it is a blessing.

The next day, Wednesday the 7th, there was little change. She was still mostly unreachable, with occasional flickers of recognition when someone would show up to see her. She would also see me when I asked her if I could put her mask back on when she took it off, and she would give a little nod to let me know it was ok. I had to give her morphine and Ativan orally in liquid form, squeezing a syringe of it into her cheek and rubbing it gently in to help it absorb. Despite all of it, she was extremely restless. That night, I think, she got up suddenly and walked before I could grab the morphine pump and the line tore out of it, which meant a call to the hospice nurse to get a new one installed.

Wednesday was also the last day she spoke to me. It was light outside, I remember that. No one else was around. She wanted to get up, but didn’t know where to go. She sat in the chair beside the bed, looking around lost and confused. I was talking to her, the whole time, as I usually did, asking her where she’d like to go, if I could get her anything, just letting her hear my voice. She got up and sat on the side of the bed. I sat in the chair in front of her. She looked at me, really looked at me, for the first time in a while. Please don’t leave me, she said in her tired whisper, please don’t leave me, please never leave me. She said it over and over and I told her I promise I will never leave you, I promise, I’ll stay by your side, I’ll always be by your side, I love you, I promise.

She stopped pleading. I told her I loved her. I love you too, she whispered to me, the light of my life, my best ever friend, my everything, and those were the last words she ever said.

That night, Gabe volunteered to stay up with her so I could try to sleep. She’d been incredibly agitated and restless all night, and I’d talked to the nurse on call letting her know what was happening. They told me to increase the frequency of the doses. Every two hours I was to give her the cold liquid meds. As Gabe sat in the chair, I lay beside Julienne, holding her hand, and slept between the alarms. Every two hours I would get up, put some liquid on the inside of her cheek, gently rub it in, then crawl back beside her, holding her hand, sleeping until the next dose. The increased frequency of the dosage helped calm her, finally. She started to sleep without fidgetting or getting up. It was the first real rest she’d gotten since the previous Friday morning.

When the sun came up on Thursday, August 8th, Gabe went off to get some rest. I sat in the chair beside her and read to her from The Ocean at the End of the Lane, as I’d done early on in hospice when she was more lucid. I decided I was going to just read to her the entire time hoping to finish it for her. Lucy was there now, and she suggested that we change her clothes and give her a quick sponge bath. Her nurse experience helped quite a bit and we soon had her changed and clean. I went back to reading aloud, apologizing to Lucy for the English accents I was affecting for the characters (for they were, indeed, English) and she was kind enough to say I was doing fine.

As I’d been doing throughout, I was checking her oxygen levels frequently with a pulse oximeter. Her oxygen levels varied from 92 to 95, and if they dipped below it was usually because her mask had moved slightly. It was a blessing to see her resting finally, and the few hours of snatched sleep I had gotten during the night had really helped me.

At one point I thought of the fact that Julienne had, during her last weeks, asked me to run some more games in the tabletop campaign I’d started with her the year before. I’d kept telling her that I just didn’t have the energy and imagination for it. I had been exhausted all of the time from May on, sick with worry and responsibility, and I kept promising that I would. I did some work on it, but not enough to run anything.

I never did run the game again for her, and in that moment I felt so guilty. Why couldn’t I have just done it? Julienne was asking me for something, and I didn’t come through for her. I know it wasn’t an important thing, and I was concentrating on the important things, but the thought of me not ever being able to do something she wanted me to do ate at me (and still does, to this day, another instance that I let her down). 

I put the book down, and told her what would have happened in the game. Her character was trying to find her lost mother and to make magic work more in harmony with nature, so I told her, as she slept, all of things that would have happened, where her mother was, how she freed her, and how together they brought the worlds of magic and nature together. I know it sounds dumb, but it mattered so much to me that she know.

I went back to reading. It was now around 10:30 in the morning. It was me and Lucy in the house. Kurt, our friend, had been there, but Lucy had sent him on an errand to pick up some things we needed to keep Julienne comfortable. I paused in my reading and checked her oxygen level, but it wasn’t registering. I switched fingers and it showed again briefly, then went away. I talked to Lucy, who was on the bed beside Julienne, about it, and I kept fiddling with it. I got a reading, 92%, which was OK. A few minutes later I checked again, and couldn’t get it to register.

Just then, Lucy’s phone went off. It was Kurt, who had questions about what he was supposed to be picking up to make sure he got the right ones. She left the room to call him. I kept trying to get the oximeter to work. I felt a wave of sorts go through me. I knew what was happening. I picked up my phone to call her mother. You should come over. I think the end is coming. I explained briefly what was happening, and she said they’d be over as soon as possible.

I grabbed the stethoscope I kept by the bed and had used to listen to her lungs. I checked her wrist for a pulse. I heard it faintly, but soon it was quiet. A dread calm swept through me. I called for Lucy, but the bedroom is set up in such a way that sound doesn’t travel well to the rest of the house from there, and I think she was outside on the phone. I moved the stethoscope to her chest and listened to her heartbeat. It thudded still. I was speaking constantly, a steady rhythm. I love you baby, I love you so much, I’m right here beside you, I’ll always be by your side, I will never leave you, I promise.

As I’ve written before, I listened to her heartbeat slowly fade, alone with her in our bedroom, in the home we’d made, the curtains wide so she could see woods outside. I repeated the litany over and over, I love you, I will never leave you, I promise, as her heartbeat slowed, and faded, and finally stopped. I was holding her hand and looking at her closed eyes when she took her final little breath, telling her I loved her and I would never leave her side. She was still. I took off the mask she hated so much, still telling her how much I loved her, how I would always love her, that I would never leave her, and I promised and promised and promised, telling her over and over.

When her mother and father arrived, I looked up at them, and I had to tell them that their daughter was gone.

About Alan Edwards

Former cancer caregiver. Husband of the most magical and amazing person who ever lived.

Posted on August 7, 2020, in The Real and tagged , , , , . Bookmark the permalink. 7 Comments.

  1. “Love is the Debut, the Intermission, the Encore!!!”_-Van Prince

  2. So heartbreaking, so cruel, so horrible. Incomprehensible.

  3. Sorry the last comment wasn’t meant to be anonymous. I just don’t know how to work this.
    In the part of your story when Julienne sings “Mother” I immediately thought of this song. Anyone who has studied voice in that part of the US has probably learned it.
    “My Mother bids me bind my hair”

    Some of the words also fit quite hauntingly.
    Could that have been it?
    ❤️ Corinna

  4. Alan, I…never mind, no words..

  5. Spent today reading through your story (slightly out of order). I just wanted to say thank you for sharing it – it’s beautiful.

    I’m a stranger who interacted with her once on Facebook, but we have mutual friends who spoke very beautifully of Julienne. I’m crying just a little more as she has continued to touch the lives of others, like me.

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