This is a long read, gleaned from the pages of my journal kept during the last few weeks of my mother’s life. It is not verbatim; I’ve added some background information for clarity.
My mother Louise finally gave up cigarettes in the last five years of her life. Until then, I don’t recall a time when she didn’t smoke. Even our dad’s death from lung disease (he had been a pack-a-day guy) didn’t stop her. When she went on full-time oxygen herself, to treat Chronic Obstructive Pulmonary Disease (COPD), she’d take off the nasal cannula, the tube that fed the oxygen to her and she’d slip outside for a smoke.
At home in her apartment, mom was connected to a compressor day and night. She wheeled a trolley with portable oxygen on it when she left her apartment. Louise kept a cracking pace when walking the corridors of her retirement facility; we often suggested she slow down on corners afraid she’d take out a frail elderly neighbour.
Mom’s most annoying oxygen-related issue was dealing with dry nostrils and cracked lips from all that forced air. Doctors and pharmacists had recommended ointments, unguents and creams to help the dry nose and lips. But nothing seemed to offer much relief.
Most years, I visited the East Coast of the USA from faraway Australia and would bring mom a tub of paw-paw ointment. This ointment is an Australian curiosity: it’s made of fermented paw-paw fruit (like papaya) in a petroleum base. The most recognisable and popular brand comes in red packaging, either in a tub or a handbag-sized tube. Aussies swear by the stuff. It claims to heal and cleanse all manner of wounds — chapped lips, cuts, boils, chafing, bug bites and rashes. Chefs even use it for burns and knife cuts. Louise loved it for her nostrils. I usually carried a large tub and a few spare tubes for my sisters when I visited.
In March of 2007, I found myself at my mother’s bedside as her primary caregiver for the final three weeks of her life. Some weeks earlier, Louise had experienced a ‘low oxygen incident’. She had gone out with a portable oxygen tank for lunch with other retired nurses. Mom hadn’t anticipated being out so long and hadn’t brought a spare tank. Her lunchmates noticed Louise’s skin tone going a bit blue and that she’d gone quiet. They called an ambulance to carry her to the hospital.
Over the previous three years, mom had experienced other incidents; with her lung disease, each new episode of low oxygen caused more damage to her organs. The latest incident was a step too far. The doctors believed that Louise had sustained permanent damage and recommended hospice care.
After a week in hospital care, mom was more alert. The hospice case manager discussed end-of-life options with her and our sister Beth, who had legal and medical authority over mom’s affairs. Louise was officially placed in ‘home hospice’, a situation where a person may go home to die on the condition that a family or professional caregiver is with the patient 24 hours a day. A case manager and shift nurses coordinate regular visits. Carers can access round-the-clock phone support for emergencies or questions.
The dance began: siblings, spouses, and adult grandchildren took turns looking after our matriarch.
Three weeks into mom’s home-hospice period, I arrived from Australia to relieve my brother-in-law. Beth was there for the changeover and lived a 40-minute drive away if I needed her help.
Louise had rallied a bit and was happy to see me. Her appetite had returned a little, and I got her up to the kitchen table to eat a few times. Over the next two weeks, she alternated between lucid, energetic moments or even whole days to periods where she could do nothing but sleep.
Our favourite pastime was watching cooking, travel and home renovation programs on cable TV. One evening during Anthony Bourdain’s latest adventures she asked me to pass the Vaseline tub from her dresser. I asked her what had happened to the paw-paw ointment. I’d left her a tube to keep by her bedside during my previous visit. She said I’d taken it back to Australia with me. I said I had left her a full, unopened tube. She insisted. It was gone.
Not wanting to argue with a dying woman, less so my own mother, I suggested that maybe one of my other siblings had picked it up thinking it was theirs. I often gave them tubes for their dry winter lips. No, she said, they had turned the place upside down. I gave her the Vaseline and let it be.
That night I lay in bed, eyes wet, throat burning, wondering how my mother could even think I would offer her something then take it back. I imagined the times as a teenager when I’d used a snarky tone with my mother (there were many) and was filled with regret. I resolved to find the bloody tube.
The following day while still in bed, I phoned my husband, Andrew, back home in Australia and told him of my mother’s accusation. Andrew sensed the despair in my voice said all the right things, ‘She’s just oxygen-deprived, you know she loves you, she’s just probably confused, don’t take it to heart.’ All I could say was, ‘But I don’t want her to die thinking I would do such a thing.’ It felt like a gut punch.
Mom’s stamina had begun to wane. Had I pushed her too hard during the previous active week? The visiting hospice nurse told me that this was normal for mom to have peaks and troughs; it was a sign that it would ‘not be long now.’ That expression — not be long now — got me. The hospice staff avoided using words like death, die or dying. But watching someone who was our world — the one who held it together after we lost our dad, then our brother, her firstborn — become weak, pale and helpless, it was pretty obvious what was happening. A death.
During this whole period, I had a lot of time on my hands and so I read. The retirement residence had a well-stocked library from which I borrowed Meditations written by the Roman Emperor, Marcus Aurelius. A passage struck me for its detachment and frankness.
“Death is a cessation from the impression of the senses, the tyranny of the passions, the errors of the mind, and the servitude of the body.” ~ Marcus Aurelius
Andrew arrived from Australia within days of my weepy phone call, to sit vigil with me and keep both our spirits up. The following day Mom’s best friend, who we called Aunt Grace, visited. Andrew and I went out to the local Amish farmer’s market to buy some food and some Easter treats while mom was in the hands of her nursing school buddy. We bought lovely soft bread rolls and chicken salad for our lunch. Andrew made us a plate each, with a chicken salad roll, potato chips and a pickle.
Halfway through lunch, Louise started to look sleepy. She finished her plate with encouragement from Grace.
Mom and Grace had met during WWII while studying to become nurses. There was a shortage of medical staff during the war so the students received a baptism by fire. They were tasked with duties that forced them to be courageous and use their training with confidence.
Louise and Grace had roomed together at the training hospital and bonded over their Italian heritage. Some of the stories that they told us about the treatment of Italians in their youth made us livid, we were lucky baby boomers who had the world open before us. I can’t imagine the struggles they had to overcome, sometimes within their own community, to have a career outside of being housewives and mothers (which was not a choice, but a given). They both came through it stronger and with a kind, loving, no-nonsense bedside manner.
Grace could clearly see the signs of my mother’s failing health: the lack of appetite, the sleepiness, the shallow breathing. As I took Grace out to meet her ride home she quietly told me, ‘Oh Mary Lou, your mother doesn’t have long. I’m going home to cry.’ Then she grabbed my wrist and stared into my eyes and said, ‘but don’t you dare cry yet. You have to keep strong and take care of her.’ And one did not disobey Aunt Grace.
We cleaned up from lunch, made a cup of tea and went to sit with mom. Her tea went untouched; she slept deeply that night.
On Sunday sister Beth, her husband Steve and their son Mike came around to the apartment with all the things needed to prepare the Passover Seder. Our family was raised Catholic, but we participated in brother-in-law Steve’s Jewish holiday rituals whenever we could be together.
We prepared the table and brought out the food, but mom had neither the appetite nor the strength to sit with us. Steve and Mike were the first to take their plates and go sit with Louise, chatting with her as they ate. We took turns, one or two at a time, sitting in a chair or on the bed with mom while we ate. She apologised to Steve for not being able to share in the feast. Before we had even cleared the plates away, she was sound asleep.
Louise slept all of Monday, only waking up for a little water or orange juice. Without our normal chatter or the sound of the television, we were overwhelmed by the drone of the compressor and found ourselves tiptoeing around the apartment as though the slightest sound would wake mom. But we need not have worried.
In the late evening, I was in the kitchen and heard mom moaning and talking in her sleep, shifting and turning in her bed. We propped her up in case she was having difficulty breathing and checked that she wasn’t cutting her oxygen supply by crimping the tube. At one point she tried to get up unassisted. She was clearly agitated and saying, ‘I need to fix it.’ When I asked what she had to fix she said her underwear drawer. We showed her how tidy her drawer was and she relented.
I phoned the hospice office and was put through to the night duty nurse, Debra. She asked a few questions about Louise’s condition to fill her in on anything that may have happened since the previous home visit. Debra said mom’s discomfort was to be expected and that, although agitated Louise was not likely in pain. Towards the end of life, a person often has a sudden urge to get things in order.
Nurse Deb asked if I was comfortable giving mom a dose of liquid morphine. I told her my sister Beth had taken me through the routine and the procedure for recording the dose in the register. Deb reassured me that a small dose would be enough to settle mom and that a hospice nurse was due to visit late the following morning, Louise’s 81st birthday.
We’d promised mom that we would take her for a birthday wheelchair ride around the grounds of the retirement home. The spring flowers and trees were glorious, and we had been marking the progress of the season through the big bedroom window. We are all excited about a change of scenery.
I thought back to 12 months ago when we were preparing to celebrate mom’s 80th birthday. She thought we were just having brunch at a local restaurant with the immediate family and Grace. She was not displeased though when we surprised her by hiring a private room and inviting old friends, neighbours and cousins. The gathered crowd regaled us with stories of how they knew mom and what she meant to them. Now, my mother was not one to cry easily but she was genuinely moved by the comments and the kindness of the people she loved. We all beamed with pride to have such a well-loved mother.
And here we were now, on the eve of her 81st birthday, and I had just been directed to give my mother a dose of morphine. The incongruity of this situation — the nurse had suddenly become the patient, and the daughter was acting as the caring nurse — made Andrew and I chuckle inaudibly as we looked at one another. We calmed Louise and told her that nurse Deb had recommended some relief to ease her breathing. She agreed it would help and allowed me to squirt the small dose under her tongue through a plastic syringe. Soon she settled into more regular breathing. We raised the foot of her bed a touch, the way she liked it, kissed her forehead and waited as she drifted off.
Come bedtime, I decided to sleep on the other half of mom’s double bed, which was made up of two singles with hospital-style mattresses and controls. I wanted to hear if she tried to get up during the night.
I tucked myself in but woke feeling cold a few hours later and searched the cupboard for another blanket. Mom did not rouse.
At 8 am, I woke up with a start to activity in the kitchen and looked toward the window to gauge the weather. I’d needn’t have bothered leaving the curtains open for the morning light to wake me; it was a gloomy, grey day.
Andrew came in with coffee for us. He pulled the chair up to mom’s bedside and held her hand. Louise’s breath was shallow; she still asleep and was taking a long time between breaths. On his watch, he started timing mom’s respirations. She was only taking two or three breaths a minute. And in the space of a half-hour, this slowed even more. Andrew stayed calm. I tried not to panic.
Beth would be driving through rush-hour traffic, laden with birthday gifts and a cake for mom. Should I call her mobile? What if she’s driving? I decided to send a message. ‘Don’t dally on your way here, Beth, come straight to mom’s, OK?’ Did I sound too panicked? Would she drive safely?
Meanwhile, Andrew stayed put, still holding my mother’s hand while I showered. Well used to drought years and water restrictions in Australia, I had mastered the 4-minute shower. When I came back into the bedroom Andrew said, ‘Lou I think she’s gone.’ Before I could even kneel closer to listen, she took another breath. Andrew and I gasped.
Louise’s slow respirations were keeping us on our toes. With each 40-second gap between breaths, we’d look at one another and say, ‘is that it?’ Then she’d take another breath. This went on for another five minutes, with Andrew still keeping watch.
The hospice nurse, Carolyn, arrived just minutes after mom’s final breath. Carolyn officially pronounced mom dead, did the necessary paperwork, which included counting and taking away the remaining drugs in the refrigerator, and then briefed us on grief services available to the family.
We’d hardly seen Carolyn off when the residential chaplain came knocking with my mother’s good friend Martha, another resident of the retirement community. We delivered the news of mom’s passing to them. The chaplain asked if he could come in and say a prayer. Martha sat by the bed and held mom’s hand one more time, gave us each a hug and then she and the chaplain left saying they would notify the Director’s office for us.
Ten minutes later, sister Beth came bursting in and hugged me. The news of mom’s passing had already spread through the busy lobby, cafe and offices of the retirement community. Condolences greeted her as she traversed the corridor to the apartment.
We called our sisters and Aunt Grace to deliver the news then sprang into action. Beth knew all the funeral home arrangements and got on to the undertaker. We quickly changed mom’s nightgown and combed her hair. We knew how important looking tidy meant to her, even in death. I’d just done laundry, so we chose a lavender nightgown. The week before I had told mom how much the colour brought out her stunning blue eyes. But of course, the nurse had gently brushed mom’s eyelids closed after checking them. I quietly wept at the thought of never seeing those beautiful eyes again.
When the undertaker left, we made more phone calls. Everyone wanted to chat, and not surprisingly, we were happy to distract ourselves by talking with old friends.
What a long day. We’d stopped briefly to scoff down some sandwiches dropped off by a neighbour who had heard of Louise’s death. Beth called her husband. He told her to stay the night with us rather than drive home in the dark. Steve and their son Mike were doing fine on their own.
We let Beth have the small bed in the spare room; we would sleep in mom’s bed.
Andrew used the controller to flatten mom’s side out. The other side generally remained flat. I fiddled with the controls a bit to see if it was all in working order as it was rarely raised or lowered, but the foot of the bed did not move freely. Andrew came over to shift the mattress sideways in case it was rubbing against the frame. As he adjusted the mattress, something hit my foot.
Beth came into the room with the fresh sheets and saw a red tube roll past me. ‘That darned paw-paw ointment. Where’d you find it?’ she laughed. I snatched it up and sat on the bed. ‘Bloody tube,’ I growled. Andrew sat next to me as I ran my finger along the little indent where the tube must have been stuck against the metal mattress frame. I was full-on crying and laughing with snotty tears. Beth handed me the tissue box.
I hadn’t told Beth about the paw-paw incident, not wanting to seem the martyr. All of my USA-based siblings and their families had dealt with numerous yo-yo-ing health incidents over the last few years. And as it happened, Beth already knew about the rogue red tube; she’d been tasked by Louise to search the apartment. She’d turned over every suitcase, handbag, pocket and drawer in the place.
We made the beds in silence. The white noise of the oxygen concentrator was conspicuously absent as we got ready for sleep. Now we heard residents passing in the hallway and the wind against the windows; sounds that had gone unnoticed before. That night I slept better than I had for some weeks.
I woke early on the morning of the 11th of April to see a light sprinkling of snow falling; it was silent and melancholy. Then it hit me, I no longer had a mother or a father. Our oldest sibling and only brother, George, was gone too. My big sister Annie, a mere 14 months older than me, was now the family matriarch.
Andrew awoke as I stood daydreaming at the window. ‘Come back to bed for a bit, it’s cold; I’ll warm you up.’ I turned to join him. As I lay on my side and let him spoon me, I sighed, ‘It’s going to be a busy week’. But I knew we would get through it. All of us. Together.