Janet dies at home

This is the first in what I hope will be a series of articles from guest authors on how we die in the modern world. Sue Reynold’s short memoir of her friend Janet’s death contains many echoes, for me, of Dr. Larry Librach’s death. In particular (prosaically) her struggles with constipation, an effect of the opioids she was prescribed to manage her pain, and her withdrawal from the world around. Her life, in her final few weeks, collapsed to a few particular friends, just as Larry’s did. The dying have no strength or energy for entertaining. Sadly, friends sometimes become offended (and offensive) about the dying “cutting themselves off.” A note to the reader: The names of Sue’s friend and her husband have been changed.

by Susan Lynn Reynolds

I answered the phone and heard her husband’s, Mazhar’s, thick Turkish accent on the other end. “Soo, can you come?”

I will always be ashamed that my first response that afternoon was “I can come tomorrow.” Busy busy busy in my little life. Deadlines. In my defence, I will say that this was my first death and I had no idea of how swiftly it would move when the end was near. I had no idea how little time was left.

In a way, I suppose that’s always true. We never know how little time is left. But writing about that would be a different piece.

The doctors had told her three to six months and we were barely at three. She could live another three months like this, right? And many cancer patients went on to live years beyond the stale date assigned by the medical system, right?

I had seen her just a week ago; I’d gone down to relieve Mazhar so he could go to the city for a night, play music, hang out with his friends and try to forget for the night that his wife was dying.

She was doing fairly well (or so I thought — as I say, this was my first death). She was slow but mobile. She was eating and drinking, albeit mostly things that were mostly liquid. Fruit, yogurt, juices. We laughed. We watched TV – keeping up on the shows she loved.

In the afternoon we had pulled out all her jewellery (the pile that, two weeks later her friend Lorna would survey in disbelief. “OMG, it’s like a pirate’s booty!”). She had gone through it piece by piece and allocated many of her treasures to her wide circle of beloved friends.

She slept well. In the morning we had tea together as we had done hundreds of times over the years of our friendship. It was all disarmingly normal.

Because it was my first death, I didn’t understand the significance of the arrival the next morning of the delivery guy with her morphine pump.

I also didn’t understand the significance of the story she’d told me the day before. She was having trouble with constipation. Mazhar had helped with an enema, had helped her onto the toilet that day. “The pain was excruciating,” she told me. “Agony. I was screeeaming.” She shook her head. “And oh my god, the smell!” She shook her head again. “You know Mazhar and I have had our troubles over the years, but I give him full credit. He’s been amazing. Whatever problems we’ve had, he has eradicated any debt between us. He’s been here for me a thousand percent these past few weeks.”

And now a week later I said, “I can come tomorrow.”

Mazhar answered, “Okay Soo, see you tomorrow.” But his voice broke as he answered, and that rough edge in it sandpapered me awake.

It was the week between Christmas and New Year’s. I had promised to wrestle my receipts into some form that I could hand over to James to get our taxes in by the deadline.

I moved to the other room and told him about the phone call. I will be forever grateful to James for his response. He fixed me with a steady gaze and said, “What do you have to do that’s more important than this?” (Needless to say, this was not his first death.)

“But I promised you the tax information.”

He waved me away. “Go.”

I called Mazhar back. “I’m coming now.”

“See you soon Soo.” The relief in his voice was palpable.

Fifteen minutes of frenzied packing later I was on the road and driving too fast. I got stopped for speeding in the first 20 minutes of the two and a half hour journey and lost it, sobbing as I scrambled through my (always) badly organized documents in the plastic folder in the glove compartment. “My best friend is dying. I think I’m on my way to her deathbed.” In the last half hour, reality had caught up with me.

I don’t have another memory of that trip until I pulled up outside her back door. Mazhar was standing in the driveway having a smoke. “Thanks for coming Soo.” He hugged me and the smells of winter air and cigarettes surrounded us.

Mazhar and I shared an interest in the spiritual, mystical side of life. For him it expressed itself in his dedication to Sufism and the Sufi music he played. He was always sharing his traditions and beliefs with me, and today was no different. “For Sufis,” he began, “this is the greatest privilege. To be with someone as they are dying. To serve them.”

And I did feel privileged. I have a small piece of stone in my home carved with the words “Friends are our chosen family.” Janet’s relationships with her biological family had always been very difficult. Particularly in the last months of Janet’s life, it was her friends – a few of them – with whom she felt she could be completely herself. I felt very privileged to be included in that tiny group.

Over the last three months, the group of people Janet would agree to see had shrunk to a very small number. A long standing friend, Diane, who was a community nurse, and her partner who lived just down Morrison Pt. Road, Elaine, the doctor who was attending Janet and who lived close by. Mazhar. Me. That was pretty much it.

In place of personal visits, friends had started an email chain to keep the group abreast of what the developments were.

People were taking it pretty hard, not having access to her. Another friend, who lived on the road had written a long letter protesting Janet’s sequestering of herself. It was full of “what have I done?” and “what can I do?” and “your behaviour is hurting me so much.”

Janet called to read it to me and talk through her reaction before she answered it. “I’m exhausted,” she sighed. “I can’t believe I have to muster the energy to deal with this. I’m tempted to just ignore it.”

She related the story of another friend who insisted on having an audience with her despite her protests that she was too tired for visitors. “Finally I agreed she could come; she was supposed to be here at 2:00. She came almost two hours late!” She snorted. “I have so little time left, and she’s two hours late?! And when she got here, she fell on me in the doorway and just clung to me, sobbing. I was holding her up and asking myself, I’m the one who’s dying — what’s wrong with this picture?” She sighed. “I just can’t do it anymore.”

That was part of the downside of dying at home. No watchdogs. No visiting hours. People could just drop by unannounced. Part of my job, while I was there, was to make sure no one came into the house. As her energy shrank, she didn’t have any extra for entertaining or trying to keep up appearances. The only people she could bear to be around were people who didn’t demand anything of her emotionally.

I was on strict notice. If my eyes or nose started to redden, my voice started to wobble, she’d point at me and narrow her eyes. “No crying!”

On the flip side, one of the good things about dying at home was the freedom. Until the last week or so of her life, Mazhar would drive her down to Diane’s cottage many nights. Her doctor, Elaine, played music recreationally, as did Diane’s partner. While the three of them jammed in another room, Janet and Diane curled up in bed together and watched television.

Now Mazhar led me into the house. I slipped my coat off and followed him into the bedroom.

The body in the bed had changed shockingly in a week. Her skin had turned bright yellow. Her cheeks were hollow, the skin outlining the bones of her cheeks and jaws. Her eyes, behind her glasses were enormous and black, the pupils filling almost all the space, and they were wild — haunted looking.

“Janee, Soo is here.”

She fixed her eyes on me, recognition dawning slowly. “You’re here.”

“Hi honey.” I sat on the edge of the bed. “How are you doing?”

“Janee, I’m going to get you some water.” Mazhar disappeared.

As soon as he left, she reached under the other pillow on the bed and pulled out a teal folder. “I need a promise from you,” she said, her words slow and awkward, as though she had marbles in her mouth. “You have to destroy this. Mazhar must never see it.” She pushed into my hands. “It was from a bad time. He’s been amazing. This doesn’t matter anymore. Promise me!” She gripped my arm, her fingers bright yellow against my skin.

“It’s okay. I promise. I’ll destroy it.” I dropped my voice. “Mazhar will never see it.”

Something in her relaxed and she gave her weight to the pillows.

I quickly got up to speed. A community nurse was on her way to the house to catheterize Janet who could no longer get up to go to the bathroom. In fact, she had no strength to do anything, even move herself in the bed. She was propped up with pillows under her back. But because of the angle of the pillows and because of gravity, over and over again she would begin to slide down, collapse in on herself at the bottom of the pile of pillows. Then she needed to be raised up and re-adjusted in the bed. Mazhar and I lifted her together, but the low, queen sized bed made it extremely awkward to get a solid grip on her.

The nurse who showed up was young. She efficiently handled the physical side of things but seemed a little unsure of her role or her authority. She began to instruct me on the maintenance of the catheter and bag. Janet told her, “You better show Mazhar. Sue doesn’t live here – she’s very busy.”

I met her eyes. “Sweetheart I’m here now. I’ll be here till –” I broke off. “I’m here for good now,” I amended.

The community care nurse wanted to show me the catheter and the bag attached to the tube, hanging below the edge of the mattress. Once again, I was shocked. The bag already had fluid in it, but rather than the pale yellow I would have expected, it looked like there was about four ounces of Coca-Cola in there.

Janet, who I had never witnessed being anything but gracious in her life, was uncharacteristically short with the nurse – almost rude. After the woman left, Janet commented on how her clothes had smelled of those dryer sheets – Bounce. “Nauseating,” she pronounced.

As the evening wore on, Janet became agitated. She was worried about something and wanted me to get hold of her doctor to check it out with her. I phoned and left a message, but Dr. Elaine wasn’t there.

Janet couldn’t let it go. She kept asking me to call again. At one point she said, again uncharacteristically judgmental, “She has to answer. She’ll go out to dinner and drink too much wine and be useless.”

Not only was this out of character for Janet, it was not a realistic evaluation of Elaine who, up until that point, Janet had always described as professional, competent and a good friend.

In Janet’s room, on one side of the bed a mattress on the floor filled all the space between the bed and the wall. Mazhar had been sleeping there so as to be close enough to hear her if she wanted something without making her strain to yell. And also, I figured later, so that he would wake up. It was a tiny house, the extra bedroom sharing a wall with the Master bedroom, but in his state of tiredness he must have been worried he wouldn’t hear her if she needed him. In a moment of clarity, she grinned and said, “We call that mattress Köpeğin yatağı – it’s Turkish for ‘the dog’s bed’.” They exchanged a look and laughed.

Mazhar brought her juices, water, ice chips. He put the straw in her mouth or tipped the cup to her lips spilling drops down onto her collarbones. She shook her head irritated. “Mazhar, leave me alone. Let Sue do it! She knows how to do it. She doesn’t force me.”

And there was some element of force to what he was doing, as if with each ice chip, each sip of liquid he could will her to go on. He hovered, attentive, much like the dog his mattress had been named for.

As the evening got later, the household settled down for the night. I took the köpeğin yatağı for the first shift at least. I could see how exhausted Mazhar was. And within a few hours I understood why. In fact, I wondered how he had managed so long by himself.

She rarely slept more than a half an hour without waking up in pain. She needed some water or ice chips. She woke from bad dreams or hallucinations, agitated and unhappy. She needed to be shifted, lifted higher on the pillows. I kept my eye on the clock and made sure she knew when she could have the next dose of morphine, if she wanted it.

At one point, I was kneeling on the bed, my arms under her, trying to shift her higher onto the pillows and I felt something snap in my back, shooting pain radiating out from that spot. I swallowed my gasp, grit my teeth, finished lifting her and straightened, the ache pronounced and persistent. It was with me the rest of my time there, and weakened my ability to lift her.

Despite being banished to the guest room to get some sleep, Mazhar was clearly hypervigilant now. He stumbled in several times during the night to see how we were doing. At about 4:30 a.m. he said, “Soo – you go sleep in the other room now. I’ll sleep here.” Together we lifted her higher onto the pillows and then I took him up on his offer, crashing into unconsciousness for two and a half hours.

In the morning light Janet seemed better than she had been through the night – brighter and more alert. Diane and Elaine arrived around 10. I was infinitely relieved that “the doctor” was here – somebody who actually knew how this thing might happen. Now Janet could get answers to her questions. Elaine went in the bedroom and pushed the door closed, while Diane checked in with us in the living room. We could hear the murmur of voices.

The doctor emerged half an hour or so later. “I’m going to phone in some prescriptions,” she began, addressing Mazhar. “I’m ordering her Haloperidol for the – “

He motioned to me. “Tell Soo.” He disappeared into Janet’s bedroom. His English was okay, but I guessed that he was a little nervous about the medical lexicon.

Elaine turned to me. “She’s distressed and agitated about the dreams and visions she’s having,” she said. “An effect of the morphine. I’m prescribing Haloperidol – it’s an anti-psychotic. If she’s very agitated, put two of those under her tongue. As for the morphine, I’m increasing the dosage to deal with the pain. She can have as much as she wants.”

There was something else too – I don’t remember what it was.

“I’m also ordering a hospital bed,” she said. “It’s too hard to move her in that bed – it’s too low and two wide. And the pillows aren’t ideal.”

“How long will that take?” I asked. At this point, I still thought it might be a week or two before the end.

“It’ll be here this afternoon.”

Janet found the catheter very uncomfortable. The bag of Coca-Cola had hardly increased its volume since the initial installment the night before, despite her ice chips and the drinks Mazhar kept plying her with.

Mazhar and I conferred. “Just take it out,” was his vote. “We’ll put towels under her. We can wash them. Who cares.” He shook his head at a memory. “Janee always said, ‘I don’t want to be a sick person smelling like pee.’” He laughed. “I said to her, ‘Who cares about that?’ She should be comfortable Soo. Take it out.”

The community care nurse had shown me how to do that if we needed to; the removal was a matter of seconds. And she did seem much more comfortable after that. We rolled her over and got several thick towels under her to absorb whatever urine she might be able to pass. Every few hours after that we changed the towels and I washed her. There was a strong smell of pee, just as she had feared, but very little actual liquid. The towels were almost dry.

The hospital bed was there within two hours, the delivery man crisp and efficient. He moved it in, and showed us all the adjustments.

How are we going to get her into it? I panicked a little. She was unable to even push herself up onto her pillows. But Mazhar and I got her to the edge of the bed. She put her arms around our necks and over our shoulders and we made a sling of our linked arms under her. We edged her out the bedroom door sideways and got her onto the edge of the bed and then helped her lie down. Clumsy but ultimately effective.

I keep talking about her as if she weren’t there cognitively. And sometimes she wasn’t. But at other times, she seemed alert and completely herself.

This moment was one of them. The hospital bed was set up in the living room facing out the huge picture window to the view she loved of the bend in the river, the big willow tree (leafless now, the blue sky beyond showing through its bare yellow twigs), and the pasture beyond where the horses stood in the winter sunshine or pawed the snow to get to the grass beneath.

In that same room a fire burned in the small woodstove, sending out a glowing radiant heat.

Her two beloved cats had refused to come into the bedroom but now Bunny, the black and white, jumped up on the hospital bed, nestled into a loaf shaped bundle with his eyes almost closed. He began to purr.

How often we had sat together in that room, curled on the couch, talking about everything and nothing. When she got her diagnosis, we sat there and discussed what was to come.

“Susie, I’m not afraid of dying,” she said. “But I told the doctor, I can’t stand pain.” Her voice broke, tears sparkling in her eyes. “I can’t be in terrible pain. That’s my worst fear. That I won’t be able to bear it.”

But there didn’t seem to be any discomfort now, except when she slid down the pillows and needed lifting.

We developed a technique based on the fireman’s lift Mazhar and I had done. If he wasn’t there to help me, I’d tell her to link her arms around my neck. With this new bed, I could step in close and use all the muscles of my legs to lift her up.

She drowsed and dozed. The cats purred and visited her. The prescriptions arrived and I did what I was supposed to with the ones that were supposed to be administered, and kept the optional ones in reserve.

Mazhar went to town to get some dinner and came back. I went to town and got some dinner and came back. She couldn’t bear the smell of cooking in the house. Besides, it was a relief to get outside for an hour and just be alone.

Night fell. I lay on the couch close by her bed. Once again, Mazhar went into the guest bedroom to try and get some sleep. She was more restless that night than the night before. I got up and lifted her to ease her back several times. Mazhar got up several times to check her.

Somewhere around three or four o’clock in the morning, she cried out. I gave the morphine pump a little squeeze as the doctor had instructed. But she continued to moan and whimper, clearly in the grip of the hallucinations the doctor had referred to.

I conferred with Mazhar. Explained what the doctor had told me about the drugs. Should we give her the anti-psychotics?

Trusting that Elaine knew what she was doing, and wanting to ease Janet’s distress, I put the two pills under her tongue as instructed.

She settled again soon after and was quieter for the rest of the night. Mazhar and I got up less often to move her.

In the pale dawn light, I woke to find Mazhar standing by her bed, his face contorted in grief. “Look at her Soo.”

Overnight her skin had turned a bright orangy gold. Her eyes were slightly open, her breathing raspy.

I knew in that moment it wasn’t going to be a week or two.

Mazhar stumbled past me and headed for the door.

She half woke and moaned. I got her to cling to my neck again while I lifted her and then I took her hand and settled on the stool we had set by the bed, looking out on the river view we had enjoyed together so often, the sun just beginning to burn over the horizon.

Her breathing changed. She let out a couple of rattling breaths. Her slightly opened eyes showed only slits of white. I tightened my grip on her hand and looked out the window of the door to where Mazhar shivered on the porch, wreathed in cigarette smoke. Should I go get him? But I didn’t want to leave her side if she was dying in that moment.

There was a long silence and then she began to breathe more normally.

I had read enough Victorian novels to believe I had just heard ‘the death rattle’. The fact that she began to breathe again seemed heroic to me, a struggle.

I’d also heard enough death bed stories to think that maybe she needed encouragement. I started to cry – and now she wasn’t conscious enough to point at me and say “No crying!” – but I managed to say, “Janet, we love you. But if you’re ready to go, you can go. It’s okay. We’ll be okay. Mazhar will be okay. I love you.”

She continued to breathe slow shallow breaths.

When Mazhar came back in, I said she’d been breathing oddly. He seemed more composed and I gave him my seat by her bedside.

“Can I have a shower?” I asked. “Will you be okay?”

“Of course Soo.”

Under the stream of hot water I thought about the stunning change in her overnight. I thought about those tablets I’d placed under her tongue and worried that they had sped things up.

I dried off, dressed and emerged from the bathroom.

The glory of the low winter sun pouring through the willow branches fell directly onto the hospital bed.

Mazhar turned to me, his face stricken.

“Soo. I think she’s gone.”

And she was.

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Author’s note: The team that surrounded Janet in the final weeks of her life were incredibly dedicated, professional, empathetic and loving. They allowed her to have the death she wanted (and indeed, the subsequent rites and the funeral she wanted too). If anything seems questionable about her treatment, the drugs given her, etc. it is no doubt due to flaws in my memory and not her care – which was outstanding.

About the author

Susan Lynn Reynolds is a writer, an accredited writing instructor in the Amherst Writers and Artists method, former president of the Writers’ Community of Durham Region (WCDR) and former vice-chair of the national organization Canadian Creative Writers and Writing Programs.

Her YA novel Strandia won the Canadian Library Association’s national Young Adult Novel of the Year award, and she has also won awards for her non-fiction, short stories and poetry. For more information about Sue and her work, visit: Inkslingers.