Our Love Story, Part 24: Hospice

Tomorrow marks one year since Julienne’s passing. I have no idea what the day will be like, or how I am going to feel and react, or what will happen. I appreciate all the love and support given to me by family, friends, and strangers over the last year. I especially appreciate you for taking the time to read this. It means so much to me.

Again, there will be no Otter Breaks. I’m sorry.

I love you, all of you.

***

Saturday, August 3rd 2019

After sunrise following that long sleepless night, I asked Julienne if she wanted to lay on my chest. It was harder for her to breathe when in any position except almost upright (or bent forward at the middle), but I had remembered her being able to sleep that way after her lung collapsed (and before we knew that fact). She nodded and settled into her familiar spot on my right side. I held her as she slept until I myself dozed off.

We managed to get a couple of hours of sleep, and when she woke up again she was more lucid. She was able to talk and even wanted some tea. I made her tea (Earl Grey, a little honey, a little milk, her favorite) and some oatmeal. I was so happy to see her back to her usual self that I just burst into tears. Julienne looked at me and said, “oh no, baby,” and held her arms out to me. I went to her, curling up beside her on the bed with my head in her lap. She asked what was wrong and I told how scared I had been all night, how worried for her, and she stroked my hair and told me I’m okay, everything is going to be okay. My poor exhausted wife comforted me until I was strong enough to get back up again, even though I knew what we meant when we said things were going to be OK: Things aren’t okay, they’ll never be okay, not for us, but that’s okay. The world spins on.

I had called hospice after we’d woken to let them know what had happened. It was the weekend so Heather wasn’t working. A nurse named Brian came by and checked her out. By now Julienne was doing a little better, but he told me that the canula wasn’t big enough to handle the increased oxygen needs and recommended a venti-mask that would increase the oxygen flow. After having been on oxygen for over a year and going through two lung collapses, it was interesting for us to learn this just now, but I was too tired to make an issue of it. I was just hoping it would help.

Around 10am a courier dropped off the mask. It wasn’t like the one he’d described to me and didn’t match the instructions he had sent. I fucked around with it for a while and gave it to Julienne to try. Even in her tired state, she hated it. It was uncomfortable, didn’t fit her face well, and didn’t help her breathlessness. Julienne went back into fitful rest. Her parents came over when they heard about the difficult night. I think either they or I went to the pharmacy to see if they had a different mask. Someone did, because we had another that was softer and more comfortable, but Julienne still didn’t like it.

As the afternoon went on, Julienne’s breathlessness was getting worse. I checked her lungs with the stethoscope for the 4th time that day. I was exhausted, worn down with worry, but I was careful. I heard the thing I’d feared ever since they taught me how to check her lungs. On the top right of her back, where the top of her right lung would be, I didn’t hear rushing air, or even the ever-present wheeze, nor the pops and crackles her disease-strewn lungs produced. There was nothing. I could hear it lower down, and on the other side, but from the critical area where her lung had collapsed twice, there was nothing.

Panic.

I kept my cool as well as I could, but I told Julienne that I was worried it had collapsed again. I called hospice back. I needed a professional, someone who’d slept at some point in the last day, to listen to her lungs. I needed to know if my fears were correct. I paced as Julienne dozed fitfully until another nurse arrived. She checked Julienne’s lungs and asked her a lot of questions. I had to answer many of them, since Julienne was a little out of it. The nurse never confirmed whether my fear of the lung collapse was correct despite my questions. She mostly ignored me and talked to Julienne.

The nurse told us that she thought Julienne should go into the hospice facility to “get her breathlessness under control”. The words chilled me. I remembered exactly what my mother had told me 20 years ago (almost to the day) when she was going into hospice (a word that, back then, I didn’t know or completely understand) to “get her pain under control.” I lost my mother days after. Hearing those words about Julienne, despite knowing the situation and inevitable outcome that had been awaiting us for a year, was a dagger to my heart. I had to keep the terror inside me down because it wouldn’t help Julienne, and I knew that she was terrified herself.

The nurse left the room and Julienne and I discussed it briefly. I told her that I unequivocally supported whatever decision she made and would do whatever it is she needed. She didn’t say much. She was calm, tired but strong. She didn’t want to leave our home, but the feeling of “drowning on dry land,” as she described her oxygen hunger, was horrible. She made up her mind. I got the nurse back into the room and listened as Julienne told her that she wanted to go into hospice. The nurse nodded and got on the phone to make the arrangements. Her parents, who had been talking to the nurse, came back into the room with us. They held her hands as I gathered up some trash and went into the kitchen.

I broke down. I knew what this all meant. I knew that the end of our time together was upon us and I broke. I cried hard, alone in the kitchen, head in my hands, knowing I was about to lose the person that I loved more than anything, who loved me most in the world, who had loved me more than anyone in my entire life. I cried out all of the worry of the previous night, the fear, the exhaustion, the memory of her screaming herself awake, I cried it all out for a couple of minutes.

Then I stopped. I splashed water on my face. I was Julienne’s caregiver, and I needed to take care of her. I was going to give her everything I had every moment of every hour we had left.

I walked back in and kissed her forehead and started to pack. I grabbed all of her favorite things, the essentials, everything she might need or want. At one point, my incredible, perceptive, empathic wife, grabbed my hand. I’m coming back out from there, she told me, as soon as I get this under control. And just like that I believed her, because I always believed her, and I always will believe her. I asked what she’d like to wear when she was came home. She wanted her red dress with the flowers, and it became her Getting the Fuck Out of Hospice dress. She also asked me to bring her favorite book, The Ocean at the End of the Lane by Neil Gaiman, to read to her.

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The dress she wanted, worn in happier times, just a couple of weeks before.

I wanted to drive her myself, but protocol demanded that an ambulance be used in case of emergencies. I was finishing the packing, trying to think of any little thing I might have missed, when it arrived. I heard voices from the other room as her parents let them in. A few minutes later they came in, an older man who was the EMT and a younger one who was the driver. Together we figured out how to transport her from the bed to the ambulance because she wasn’t going to be able to walk there. We got a blanket under her and lifted her from the bed into a chair/stretcher combo.

The EMT was oddly curt and unfriendly. I didn’t care much at that point, just needing to get Julienne to hospice. They loaded her in the back and she lifted her hand to me, wanting me to get in with her. I started to climb in the back and the EMT stopped me. You have to ride up front, he said. Insurance regulations. Julienne protested but he insisted that I couldn’t join her and I had to be up front. As he finished hooking her up to monitors and started an IV, I looked into my wife’s terrified eyes. I told her it was going to be okay, I’d be right up front and I could see her through the window and talk to her. I went and sat up front.

(I cannot tell you how much I regret listening to that fucking prick. I left my scared wife alone in the back of that fucking thing when I should have been there to hold her hand and stroke her hair. I hate myself for doing that, and I hate that fucking asshole for it, and I feel like such a shitty coward for listening to him.)

As we pulled out, I heard Julienne say she needed more oxygen. The prick EMT said something about it already being up pretty high and she said she couldn’t breathe. I looked at him and told him she needed more oxygen. He said something back in a shitty voice and adjusted the flow. Our house is on a winding and hilly road, so we couldn’t go very fast. I heard Julienne again ask for more air. This fucking asshole said he was doing something and to hold on. I snapped for him to just turn up the air until he did. It was obvious that he was in a shit mood and I swear he was purposely punishing Julienne, or just didn’t fucking believe her.

(It was around this time that Julienne took a selfie. The last picture of her before the end. I don’t know if she planned on doing a post using it to let people know what was happening. I didn’t know she had done it. It was only after she was gone that I saw it on her phone. It’s heartbreaking. I hate that picture so much. I thought about deleting it, never wanting to see her like that, knowing the pain and terror she was in at that moment, but I didn’t, and I won’t. She took it. It hurts, because it captures a time when I truly let her down. I should have been back there. I should have been holding her hand. I failed her then, and I know I very rarely ever let her down, but this was a big moment and I failed to be there for her, and I cannot fucking tell you how much that hurts.)

We finally got onto straight roads when I heard the EMT tell the driver to pull over. Julienne’s oxygen levels were dropping and the EMT needed to check on her. After a minute he told the driver to put on the sirens and said we had to go to the ER. The driver, who was a nice person, did it and we flew down the road. He explained that protocal dictated that we had to go to the hospital, the EMT made the call, and we’d get there as soon as possible. The hospital was literally right next to Gilchrist, our hospice facility, but the EMT said we needed to go there.

I let her parents, who were following us, know what was happening. They had a lot of questions, mostly about why, which was understandable. I didn’t have any good answers, but I felt helpless. It’s fucking terrible to need to trust the medical industry and its practitioners, because they supposedly have the knowledge, especially in a situation where, if the professionals hadn’t misdiagnosed, blown off, and ignored Julienne for years, she wouldn’t have been in the position she was. To rely on people who can be petty, stubborn, or sexist to make the right decisions about people they don’t know but love to make assumptions about (biases on sex and race in the healthcare system literally kill people every day) is a shitty place to be. Maybe if this prick had given her enough oxygen in the first fucking place and let me be with Julienne her fucking oxygen wouldn’t have dropped in the first fucking place.

Anyway. I’ll cut the rest of the bullshit short. We got to the emergency room. Julienne had been stable the entirety of the ride after we’d pulled over. Her parents and I argued that we just needed to go to Gilchrist across the street. The hospital said she needed to see a doctor. I was just glad I could be beside her and hold her hand, and I knew I would never allow anyone to separate us ever again. Jay and Sharon were furious, tearing the EMT a new one in a very satisfactory manner. Julienne and I just wanted to get her to Gilchrist. A doctor showed up and eventually let us leave. It was a half-hour of unnecessary delay because of one prick EMT who should never be allowed near a patient again.

(Fun fact: a month later I received a bill in the amount of $918 for that 5-minute doctor evaluation. The medical industry in this country is something else.)

Eventually, we got her to Gilchrist (I rode in the back of the ambulance that short distance, because fuck that guy). By this point it was like 9 or 10 pm. It was quiet and calm there. Everyone was kind to us as we got Julienne into her room. It was spacious and nice, with double glass doors that looked out onto a little patio and some woods. We were told that the bed could be moved, even outside, and Julienne, as ever talking to all of the staff like they were her friends, loved the idea of being able to look out over woods like she did at home.

Ever since her dire prognosis from the year before, Julienne had said that she wanted to be at home when the end came. She wanted to be in her bed, with the dogs, looking out the big windows there at the woods she loved so much. She didn’t want to be anywhere else. Later, though, as Gilchrist took over her care, she said that she would be okay there at the end as well. She had memories of visiting her grandmother in that very building, and they were good, peaceful memories for her. She also thought that it might be easier for me and her parents, too, since we wouldn’t need to take care of her and could instead just be with her.

We got her settled in. She was understandably exhausted. Morphine and Ativan were administered. I was used to giving medication every 4 hours at least, but there wasn’t a need for my alarms anymore. It was at that point I realized something and asked the nurse about it. Julienne had been taking ibuprophen for a low-grade fever for a year, gabapentin to help with her cough, Zofran for nausea, a slew of other things. I asked the nurse about it, and they said the morphine would take care of it and the Ativan would keep her calm, and they would adjust them as necessary to keep her comfortable.

I worried about her fever. I worried about everything. I worried about her. I sat next to her after the nurse left, as Julienne dozed, holding her hand, tired but afraid to sleep.

***

Sunday, August 4th 2019

Julienne had a bit of a restless night. She could sleep 15 to 20 minutes at a time before she moved, never really waking up, but going from lying back to lying forward, until her nose touched the covers, then groggily shifting and moving until she was lying back again. She would need to get up to use the bathroom occasionally, so I’d make sure her oxygen tube was free from any possible entanglements, shift her IV pole so it could be easily grabbed, then help her sit up, catch her breath, help swing her legs to the side of the bed, let her catch her breath, then squat down and put my arms around her. She would put her arms around my neck and lean her head on my shoulder and we’d stand together, then stay that way for a little bit, just holding each other, like we’d done countless times, feeling that warm safe embrace, the feeling of Home. Then I’d put an arm around her waist and pull her IV pole along as we shuffled to the cool bathroom.

She was lucid at those moments that day. She could talk for a few minutes before dozing off again, then wake up later and smile. That morning, she posted a message to Facebook to let people know that she was in hospice and any further news would come from me. It was her last post, and of course in it she was looking out for me.

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Her parents were there, of course. We’d have brief conversations with her between naps. She was still restless, but she was still herself, just tired. Our friends (truly, family that just happened to not be related to us), Christian and Allie, came down to see her. At one point, I left the room to walk and talk with them a little as Jay and Sharon sat with Julienne. It gave me a chance to break down again, to let out some of the fear and pain and sorrow. They took care of me and I was able to go back to Julienne, to be strong and not give her a reason to worry.

I asked Julienne if she wanted the bed moved over to the big windowed doors to look outside, like the nurse the previous night had suggested. It was hot outside, but she could at least be inside and look out over the trees. I asked the current staff if they’d move her, and they acted like I was crazy. It’s too hot, she should stay put, there’s a lot of lines, a bunch of weird excuses. After they left, I was going to do it myself. After weeks of hospital stays, I knew how everything worked, and I wasn’t going to take no for an answer. As I was getting things ready, the staff showed back up again, acting as if they’d never said no, and we moved Julienne’s bed so that she could look outside like she wanted.

People are really odd, sometimes.

As we sat around her bed, her parents, Christian, Allie, and I, Julienne came more awake. Can I ask you something, Allie? Julienne had one detail that she needed to finish for her end-of-life plans. We’d discussed it many times with each other, but she’d wanted to arrange it in person. Julienne needed someone to do her makeup for her after the end. She admired Allie for many reasons and one of them was her makeup game. So Julienne told her how much she loved Allie’s abilities, and also the fact that, of all the people she knew, Allie would be the one who would most enjoy the chance to play with a dead body. We all laughed, despite the situation and setting. Like Julienne, Allie was a lover of horror movies and real-life ghost hunting, a fan of the weird and macabre. Allie told her of course, anything you need. Julienne relaxed after that. It was like a last item on her to-do list being checked off, the last element she needed to know was going to be handled during a time when she couldn’t do any of it herself.

That conversation was the longest and most lucid one that Julienne would have before the end.

Eventually, after she dozed off, we got her bed back to the original position. She rested, not talking much. At this point, most of the time, she wasn’t lucid. Often, she wanted the mask off her face. She’d long been used to the canula, but she hated the mask. She’d push it up off her face and resist attempts to put it back. Eventually I figured out how to handle it. I’d let her leave it off for a minute or so. It wasn’t long before her lips began to turn blue, so I’d softly tell her that she needed some air and I’d ask if it was okay for me to put the mask back on her. She’d look at me, her eyes tired, and nod slightly, and I’d settle it back over her face. I hated it, hated seeing it on her, but at this point she needed so much oxygen that a canula was out of the question.

As night approached, Sharon told me that they would start taking turns at night to watch Julienne so that I could try to get some rest. It had been a while since I’d slept more than twenty minutes at a time. I was grateful to them for the offer. I made up the chair/bed beside Julienne as I had so many times before, right next to her, as she dozed off and on.

Despite my exhaustion, sleep was hard to come by. Instinct woke me up every time Julienne shifted, and I’d open my eyes and make sure she was ok, holding her hand and shutting my eyes again. I slept in dribs and drabs. Finally, around 1 am, I woke up to see Julienne sitting up, legs over the side of the bed. She wasn’t lucid, but she was going to stand up and go where she wanted to go no matter what. I jumped up and helped Sharon get the IV pole positioned and air tube clear and Julienne steady. I literally had to hold her still until everything was ready. She was resisting me with unexpected strength. She wanted to go, and she was going. I got her to the bathroom where she sat until I could cajole her back into the bed.

(Only later would I realize what was happening. She was hot. I believe the untreated fever, while low-grade, contributed to her lack of lucidity and her need to cool down. The bathroom, with the cool tile floor and seat, was a relief.)

This became our new normal. There were only a few more coversations to be had, a handful of lucid moments. Almost all of them were absolutely heartbreaking.

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. 3 Comments.

  1. There are no words to express how I feel about all of this. My grandfather was in Frankford Hospital in Philadelphia when he passed from late-stage colon cancer and cirrhosis and I was the only person there to see him at the time. My dad was working, and my grandfather was talkative but did not know that I was not my dad. He kept calling me his “Little Eddie Boy”, which was his nickname for my dad when he was younger. To hear all that he said in regret and sorrow for how he treated my dad (and how my father treated me for years) and that it was all his fault. The words broke me and I told him that he was forgiven. He passed 12 minutes later. I was 15 when he died 10/31/1991

    My grandmother had left the room to allow the two of us a moment and came back in just as he was crossing over. I told her what he said and she made me promise that I would never tell my dad but years later, when my father was diagnosed with the same cancer that killed his father, I told him every moment of the time I was there. My father still will not talk about it (I have heard more about his time in Viet Nam than this occasion) but wanted me to tell the story when he passed and if he passed before me.

    Now that my father is older, he wanted to sit down and have me write it all out for him, just in case I went before he did (his cancer is in remission, mine is not) and even all these years later, the words hurt no less than before.

    All I can say to you is a quote from the German Philosopher and Poet Ludwig Jacobowski: Nicht weinen, weil sie vorüber! Lächeln, weil sie gewesen! – In English: Do not cry because they are past! Smile, because they once were!

    • Also, my screen name does not always get to my real name, I do follow you on Instagram as Ed Taylor.

    • Thank you so much for sharing this. Your story is heartbreaking. I wish I had words to express a solidarity of pain and love and loss. It’s like a hand reaching out blindly in the dark to find another hand to hold. I would grasp yours if I could.

      I’m grateful beyond words to know you. Your support and kindness and strength have been a blessing to me. So much love to you and your family.

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