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'Goodbye, Mum. I love you': Son's diary of mother's last days with Covid-19

NZ Herald

There are 18 Kiwis who have died of coronavirus in New Zealand. Each one leaves behind a grieving family and heartbroken friends. Here, in a moving diary, a son recalls his mother's last days of hope and sorrow as she is lost to Covid-19.

Thursday

There have already been news reports of confirmed Covid-19 cases at the rest home. My mother, who is nearly 80, has been a resident there for a few months.

Around midday I'm rung by the manager. Her tone is positive, and she gets straight to the point. Mum has the virus, but like most of the residents her symptoms are mild. She had a temperature spike on Wednesday but today her temperature is normal. She has a cough, but no shortness of breath. The DHB has brought in extra staff to help look after the patients who are infected.

I feel okay with the news; Mum is frail and has underlying health issues but if her symptoms continue to be mild and if she is well looked after she should get through. I tell my wife and call my brother. We're all concerned, naturally, but equally resigned to the fact we can't do anything, considering we are in our own lockdown bubbles and the rest home is closed to visitors.

Friday

I get a call mid-afternoon from someone at the rest home, a ring-in from another facility called in to help. The decision has been made to move Mum, along with a few other patients, to hospital that afternoon. The reason given is that the DHB nurses and doctors feel they can look after them better in the hospital environment.

Later in the news report I read, the reason given is that the rest home is understaffed due to virus-related stand-downs, so the residents with the disease will be moved until the staffing levels can be returned to normal. Conflicting explanations, but it all seems reasonable. Mum's condition is still unchanged. It's time to tell the children, Mum's only grandkids, she has Covid-19. They take it very well, I guess because her history of health issues has prepared them for it.

My cousin sends me a link to a breaking news story about ambulances at Mum's rest home. Now we have to tell the wider family. The responses - best wishes, prayers and positive thoughts - flood in. It's a surreal feeling to be caught up in the biggest story in the world, especially here in New Zealand where the narrative to that story is so positive. I hate this plot twist.

Saturday - Monday

My wife and my brother take turns contacting the hospital to check on Mum. Nothing has changed in her condition. My wife's keen to organise a way to talk to Mum, but she's told it's practically difficult.

Tuesday

Around midday, I get a call from the charge nurse on Mum's ward, who hands the phone to a gerontologist who has been caring for Mum since she was diagnosed. He wants to update me on Mum's condition, but also to warn and reassure me, because it is going to be announced at the 1pm press conference that a woman in her 70s, a resident from the rest home, had died in hospital the day before, New Zealand's latest death from Covid-19.

I quickly contact my wife, brother and extended family so that they aren't too shocked if they watch the press briefing live.

At this point there is no nationwide policy on compassionate visitation rights for family of Covid-19 patients. The doctor says that one person from the family can come, for brief visits, but it can only be one person, and the same person each time. After a discussion with my brother, we decide that person will be me.

Later in the afternoon, when I contact the charge nurse to arrange a time, I'm asked to wait while she checks further up the decision-making chain to see if I am, actually, allowed to visit Mum.

The answer, thankfully, is yes. Later, I read on the Ministry of Health website that each DHB makes its own policy on the conditions under which visitors might enter hospitals during the lockdown. I feel like a guinea pig, but at the same time, I feel I understand the risks. I've been the one in our bubble doing the supermarket shopping. Last week I had an extreme runny nose and the sneezes and the helpful Heathline person suggested a test would be sensible; I had the uncomfortable nasal swab on Friday and the negative result less than a day later.

Heading along the motorway is the furthest I've driven in a month. I stop at the supermarket to get Mum some treats I hope will tempt her to eat and drink: Lucozade, juice cartons, chocolate bars, biscuits.

There's a security guard at the main entrance to the hospital, plus a staff member behind a desk, who has my name on a list. I stand behind a line taped on the floor and answer a series of questions about symptoms, overseas travel and contact with known or probable cases of Covid-19. It's a "no" to all the questions.

I tell her about my negative test result. The staff member fits me with a white wristband. I'm directed through to the hospital lobby and the hand sanitiser, then instructed to sign in by the inquiry desk - name, phone number, email, name of patient, ward, time of visit, yes/no Covid questions, signature.

I'm very familiar with this hospital, having visited Mum here too many times in recent years. I head past the closed cafe, along a corridor, down a flight of stairs and along to the ward. I'm let in by the duty manager, then met by the charge nurse and the gerontologist.

The doctor is much more concerned about Mum now, at 5.30pm, than he was at 12.30pm. She's not getting enough oxygen, so they have begun to give it to her through a nasal canula. He uses the word "succumb" and I start to realise the extent of the slide in Mum's condition since the first call I got from the rest home manager last Thursday.

Medical staff talks to someone at a pop-up community COVID-19 testing station. Photo / File
Medical staff talks to someone at a pop-up community COVID-19 testing station. Photo / File

The plan is to move Mum tonight to a room where they can boost the concentration of oxygen to help expand her lungs. I ask if this is ICU - I've read reports of how few people survive once they need intensive care - but both the doctor and charge nurse are quick to tell me no.

I have to sign another register, in front of another security guard, before we can enter the closed corridor where Mum's room is. The charge nurse stops outside Mum's room and begins to explain the process of donning the personal protective equipment (PPE), which is all neatly laid out on a high shelf by the door.

First is the gown - light, waxy, yellow, with wide elasticated white cuffs, done up at the back with a velcro fastener at the neck and a bow lower down. Next are the rubber gloves, blue and large, which must fit over the gown's cuffs. When I've finished, these come off first, hooked carefully from the inside.

Then I get a white mask - it's flat, so I have to pull it apart, slipping the bottom over my chin and the top over my nose; it has a mouldable strip across the bridge of the nose which you shape to "seal" the mask against your cheeks. Last is the thin plastic eye shield which goes over my own glasses. I've never worn anything like this. It's disconcerting: my hands are sweating in the gloves and my breath is hot in the mask.

The charge nurse, who is calm and reassuring, asks me if I'm ready, and opens the door.
Mum is the only patient in a four-bed room. She's in the bed by the window to my right. Her nurse is seated and is helping her eat a pink pudding and take sips of a fortified drink. The rest of her dinner, including soup and a beef stew, is untouched. Mum has a history of losing interest in food, although her appetite has been good recently.

This is the first time I've seen Mum since the day before the lockdown, when I took my children to see her through the window of her room at the rest home. She looks very tired. Her breathing is quite fast. She is pale. But she recognises me despite the PPE get-up and she responds to my greetings. The nurse finishes with the food and leaves us alone in the room.

It's very quiet. I can hear the ticking clock behind me on the wall between the windows. Every now and then a box at the foot of the bed makes a pumping noise. I can hear my own breathing in the warm mask. I can hear the rattling in Mum's chest as she inhales and exhales.

I'm not sure how far away I should sit, or if I should touch Mum, so I decide to sit where I normally would, nearer the foot of the bed, and I don't make physical contact. After telling Mum everyone is thinking about her and sending their best wishes, I struggle to know what to say.

Mum fidgets and slips into a lean. I ask if she needs help - more pillows or something - and she nods. After pushing the call bell, a care assistant comes in. Then Mum says she feels sick. I stand and adjust her sheets to try to catch anything and to reassure her, even though I'm concerned for myself at getting so close. I notice there is a small gap of exposed skin between my glove and the cuff of my gown. The care assistant cannot find a carton she so leaves the room, after taking off her PPE. She is back quickly, with new protective gear on and a plastic container in her gloved hand. But Mum's nausea has passed.

At the dinner table at home that evening, my son notes that it's so good that there isn't a huge number of Covid cases in New Zealand because it means that there is plenty of staff to look after Nana. Amen to that.

The care assistant leaves Mum and me alone again. I mention specific people who have sent her messages of support. She listens, but in the silences she closes her eyes and her head drops. No one seems to be in a hurry to have me leave, despite the gerontologist telling me I should only make brief visits. I've been here nearly three quarters of an hour. Mum is done in, and so am I. I promise I'll come back tomorrow. I tell her I love her. "I love you too," she replies.

Removing the PPE is done in the bathroom of the room. I have to concentrate to remember the right order of removal. Gloves, sanitise, gown, sanitise, eye shield, sanitise, mask, wash hands. I wait outside to speak to the doctor. Instead, the duty manager confirms the plan to move Mum tonight.

I leave the hospital via the main entrance again, past the security guard and the pay stations; at least they're not charging for parking during lockdown.

I drive home in the dark, unsure what I should be feeling. I'm hoping for positive news in the morning and signs of improvement with the step up in treatment, while at the same time I'm dreading a phone call in the middle of the night. At home I leave my shoes outside, strip off my clothes in the laundry and throw them in the washing machine, then I take a shower. At dinner I have to tell my children their Nana is worse today than she was yesterday.

Wednesday

There was no phone call in the night. I'm awake early and do a couple of hours work before I confirm with the hospital that I'll be in around lunchtime.

I get the same questions at the hospital security checkpoint, but this time I answer "yes" to "have you had contact with a known Covid-19 case?" I still get a white wristband, put on by a second helper.

Mum is in a new ward, connected to the previous ward. While I wait for the charge nurse, the same one is responsible for both wards, a doctor I've not seen before approaches me. She holds a stapled sheaf of papers scrawled with notes.

This doctor has been looking after Mum. She is softly spoken but her words are serious and pointed. It's confirmed Mum has pneumonia. She is on IV antibiotics as a precaution against bacterial infection in her lungs. They are giving her additional fluids subcutaneously. She is on a higher concentration of oxygen in the new room, but this has not increased her oxygen levels.

I ask about the plan from here, hoping for a glimmer of good news. There is definitely no plan for ICU - ventilators, intubation, etc, would be too brutal on Mum given her general state of health, the doctor says. Knowing full well Mum's underlying conditions, I can understand this clinical, and compassionate, decision.

"At dinner I have to tell my children their Nana is worse today than she was yesterday." Photo / 123RF
"At dinner I have to tell my children their Nana is worse today than she was yesterday." Photo / 123RF

There is scope to increase the amount of oxygen she receives. Beyond that, the doctor says, it's measures to make her "comfortable." That's it. We all know there's no pharmaceutical treatments for this novel coronavirus. I now know that Mum's chances of beating this are minimal.

I ask the doctor how things are likely to go from here and she says that this disease seems to progress quite slowly so it would probably be "days". Days. Damn. I don't want to be here. Not on my own. Selfishly, I feel trapped, committed to coming here alone every day to watch helplessly as my mother ebbs away. The doctor leaves me in the corridor and I call my wife, desperate for comfort and connection.

She is calm and sympathetic at the other end of the phone. She feels close. She asks me to ask whether the palliative care team will be involved in Mum's care. I call my brother and he accepts the gloomy update well; we've had a few similar conversations in recent years about Mum's health.

The charge nurse is back on the ward; there has been a change in the conditions of my visitation rights. I must speak with an infectious diseases physician who will outline the risks to me of my contact with Mum. And I must sign a consent form acknowledging that the risks have been explained to me and that I accept them. This seems very sensible, even if it's 24 hours after my first contact.

The consultation with the infectious diseases doctor is over the phone and very thorough. He screens me and is happy with my general health and lack of underlying conditions (no shortness of breath or respiratory problems, no surgeries, no rheumatoid or joint conditions). He says the PPE is very effective if worn, and removed, correctly and the chances of transmission are negligible. This, he explains, means that I will be defined as a casual contact rather than a close contact.

Finally, the doctor tells me I don't need to launder the clothes or shoes I'm wearing to the hospital before I re-enter my bubble, and I don't need to shower, or isolate myself from my bubble mates any more than normal. I do need to continue to wash my hands thoroughly and maintain good hand hygiene.

And I do need to get a test if I show any of the known symptoms of the virus. I thank the doctor for his clear information and hand the phone back to the charge nurse. She hands me the consent form to read and sign.

I ask the nurse about palliative care. I tell her what the specialist told me about the disease's slow progression. She says it can progress slowly, but it can also be very quick. Truthfully, this contrary information is not a surprise to me, although it shocks; I reason that clinicians' experience and understanding of this new affliction is bound to have wide variance. The charge nurse finds another doctor, a more junior one this time, to answer my question.

This doctor meets me outside Mum's room. Through two windows and an ante room I can see Mum in her bed. The doctor is in scrubs. Her Irish accent is soothing as she explains that the palliative care team will be consulted, if needed, and there is a range of pain-relieving options available.

Mum's nurse appears and leads me into the ante room where I will dress again in the protective equipment. This time I make sure the cuffs of the gown are all the way down my wrists so there's no gap when I pull on the gloves. I enter the room proper alone.
This is a single room and it comes with the big bonus of a television, up on the wall. Mum's a big TV watcher.

There's some British real estate show on, from the Before Times.

Mum is awake, sitting up. She turns from the telly and I say hello. She looks at least as good as she did yesterday and maybe a bit less tired. We don't usually have a lot to talk about at the best of times, so I get out my phone, safe in its plastic bag, and I show her some pictures of the kids and some from one of her siblings. I play a video message from my brother. Mum watches with interest. Then I notice she's changed the channel on the TV.

There's Prime Minister Jacinda and Director-General Ashley giving their live 1pm press conference, updating the latest Covid-19 statistics. The sound on the telly is low, but the numbers flash in red across the screen. A few new cases. A couple of deaths. Eleven people in hospital. Well, Mum, I say, how does it feel to be famous? She smiles. Even in the grimmest moments humour has a place.

I ask about lunch, trying to distract her from the only news in town. Yes, she ate something. I'm running out of things to say, as usual. I tell her the thoughts of everyone are filled with her right now. They're hoping and praying for her quick recovery. She smiles and nods.

"Goodbye, Mum. I love you."

"I love you too."

I'm more confident with stripping off the protective gear, but still apprehensive not to stuff it up. There are no dramas, from sweaty gloves to stuffy mask. But out on the ward there's another condition to my visitation rights: I must leave my contact details, to be given to the Auckland regional public health service.

They will contact me every day to check on my health. That's reassuring but also cause for reflection on the risk I'm taking.

It's a beautiful autumn afternoon as I drive home. From the motorway, the city is in perfect focus and the sky's blue intensity is something only four emission-free weeks could conjure. The Waitemata glistens, and the Harbour Bridge's coat-hanger profile aligns exactly with the outline of Rangitoto. A gorgeous and familiar view, dulled by the realisation I will probably be the last family member Mum ever sees.

An hour later I get my first call from public health. Any symptoms? No. Any issues with the PPE? No. Any questions? Not at this stage, thanks. Efficient, reassuring.
Over dinner I tell my family Nana is looking okay, that she's about the same as when I saw her yesterday. Steady as she goes. Good old Nana.

Thursday

I ring the ward at around 9.30am but they are busy. The physician eventually rings me back, the matter-of-fact one from yesterday. Mum's situation is still not good; the "crackling" is now in both lungs. Her oxygen saturation is still around 88-91% but was as low as 87-88% overnight, that's despite her being on a higher concentration of supplementary oxygen than yesterday.

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She doesn't have a fever. Her blood pressure and heart rate are good but her breaths per minute is 20-30, where most people do 15-18. She is on IV antibiotics as a precaution against a bacterial infection joining in the party started by the virus. I ask what future treatment options are being considered.

"We can increase the oxygen concentration. Otherwise we are looking at comfort measures, such as morphine, if your mother becomes distressed."

Later, I rationalise the doctor's gloomy outlook: Mum just doesn't have the physical reserves of energy for this vicious fight. I thank the doctor for her time and end the call.
I update my brother and my wife: Mum's survived another night, she's pretty much the same, we wait to see what will happen.

No form to fill in today at the main entrance of the hospital. The staff member simply asks if I have any symptoms and if I've been in contact with a known case of Covid-19 "since yesterday". I say no, get my white wristband, sanitise, sign in and head along the corridor. It's around 12.45pm and I can see a lot of staff in the courtyard below sitting together having lunch. There are plenty of people at the hospital and the carpark was three-quarters full.

Downstairs in the ward the admin assistant calls a nurse to let me into the restricted corridor; Mum is in the first room. Her nurse greets me and takes me into the ante room. Mum has had a good lunch, for her - a fortified drink and a carton of juice, one of the apple and blackcurrant ones I'd bought for her on the first day of visiting.

Donning the PPE is slightly different again but following the order on the chart on the wall - gown, mask, eye guard, gloves. I remember my phone and take it out of my pocket and slip it into a bag.

Mum is awake, propped up and watching Emmerdale on the telly, with the sound low. She knows it's me under the protective gear and has no trouble hearing and understanding me through the mask. Her breathing is rapid, but she's not breathless. I can't hear any chest "rattles", which I could in the quieter room on the first day I visited.

Not much is happening at home under lockdown but I offer what news there is: one grandchild is back into the schoolwork; another cooked Swedish meatballs for dinner last night; there's still no sport to watch.

Mum listens, and hears, but is distracted by the telly, so I call my brother and Mum has a video chat with him for a few minutes. This is the first time they've "seen" each other since before the lockdown began. My brother is keen for Mum to get better so she can go to see the house he and his wife are having built. She waves and nods, tries to answer a question, but loses her train of thought. The telly is still holding her attention. As I end the call, Mum flips the TV channel to the live 1pm Covid-19 press conference. Right then I resolve to visit at a different time tomorrow.

Less than a handful of new cases: good news. More deaths: sobering news not to be dwelt on. The number of people in hospital does not come up on the screen, so I can't rehash yesterday's effort at lightening the mood. I ask Mum if she wants a Moro bar (another treat I'd brought in). She's not really bothered but I get one out and she holds it for a moment before I put it on her tray.

"Maybe you'll feel like it later."

I'm ready to go. Mum gives a half cough. I check she has the call bell. I tell her I'll be back tomorrow. And I tell her I love her.

In the ante room I disrobe alone: gloves, gown, eye shield, mask, phone out of bag, everything in the bin. Hand sanitiser between each item, hands washed at the end. I glance in at Mum, but she is focussed on the TV. I leave the ward and hospital quickly.
At home I strip and shower, wash my clothes, despite it not being required. The family is updated via email, Messenger, WhatsApp, text. At 2.30pm public health make their daily call. No, I have no coughs, fever, shortness of breath. No, there were no issues with my protective gear. Yes, I'm planning to visit again tomorrow. The pleasant and interested doctor asks how mum is and I tell him she is okay. He thanks me, I thank him, check-in completed.

Later, I tell my children Nana is about the same as she was yesterday, which is true, although I'm more concerned than I was yesterday.

It's hard to turn my mind to productive endeavours. I watch some TV and read some outraged tweets - are there any other kind? I worry about getting infected and passing on this deadly disease to the other cherished people in my bubble. Still worried, I make vege soup for dinner. At the table, talk is not about Covid-19, or Nana, but two hours later I can't recall what is what about.

Friday

It's a beautiful day for ugly news.

I go in to visit Mum earlier today so she can video chat with a relative overseas. There's a different set up at the main entrance of the hospital but I eventually get in. Yellow wristband this time, for some reason. Her nurse meets me in the ward and gives an update. Mum has been very restless during the night, trying to get out of bed, removing her nasal canula. She didn't want breakfast. The nurse didn't give her her morning medications as she was concerned about choking. I'm helped into the PPE, still nervous that I'm doing it correctly - the wall chart is wrong, I'm told; the removal order is definitely gloves, gown, eye shield, mask. Okay.

"I can't remember if I told Mum I loved her before I left her for the last time. I love you Mum." Photo / Getty Images
"I can't remember if I told Mum I loved her before I left her for the last time. I love you Mum." Photo / Getty Images

Mum is watching whatever's on TV - the home-schooling channel, it looks like. There's a big change in her. There's no spark in her eyes. She says barely a word when I talk to her. I connect her to a live video chat with her relative, who she recognises. There's a brief smile, but no words. I end the call quickly. I need to give my wife and my brother a chance to speak to Mum. That's another two quick video calls, a look of recognition in each, but no response. Mum is agitated. She's thirsty, she says. But it's too difficult for her to suck up a sip of water.

I'm so worried by what I'm seeing. I have to get out so I can talk to Mum's doctor. I say goodbye and there's an acknowledgement from her. But then I see the doctor is gearing up to come in. She says hello then examines Mum. The stethoscope is cold and Mum reacts, eliciting an apology from the doctor. The doctor asks me if Mum has told me how she's feeling, if she is in discomfort. No, I say, but I haven't actually asked her. I wonder if that's callousness on my part.

I follow the doctor out and we doff our PPE together. In the doctor's office we sit.

Mum is getting the maximum oxygen they can give her, but her own oxygen levels are slipping. She's breathing fast and hard to compensate but it's not enough and it's tiring her out. The viral count is going up and up. The pneumonia is throughout both lungs. The doctor, an experienced intensive care specialist, says someone like Mum cannot survive once the situation gets this serious. Intensive care is not a realistic option: in ICU, a fit 40-year-old would still have a very poor chance of recovery at this stage in the Covid disease process.

We make the decision together. The focus of Mum's care will now be to make her comfortable. This will involve the palliative care team who will help manage any discomfort and ensure she remains pain-free. She'll go back onto a lower level of supplementary oxygen. This will mean that she will become less responsive and less aware of her surroundings. Her distress may increase, hence the need for active pain management. There's no talk of a timeframe for this final stage. I hope it's quick and painless. I wish I didn't have to think about this.

I can't remember if I told Mum I loved her before I left her for the last time.

And it will be the last time. I don't want to risk my own health when I can't be any help or comfort to her. I certainly can't justify the risk, small as it is, of transmitting shitty Covid-19 to my wife and children.

I feel enormous gratitude for the people caring for Mum. I'm filled with the dread of telling my children their Nana is going to die.

I leave the ward, exit the hospital, drive home in the mid-morning sunshine. A beautiful day for ugly news.

Strip, laundry, shower, hug from my wife. A call to my brother with the grim details of Mum's prognosis. Then the heart-rending task of telling my children. Sobs, hugs, acceptance.

Breaking news at 1pm: a few new cases, one death to report today. Eight in hospital. There's no humour to be found here now.

2.30pm. Mum's nurse rings to tell me the palliative care has started. Mum has a syringe driver administering pain relief subcutaneously. They are about to remove her from the highly concentrated oxygen supply. But she won't be moved from the special room until they see how quickly her condition changes. I'm really hoping the virus finishes its cruelty with all haste.

5.25pm. The charge nurse calls. Mum died five minutes ago. They took her off the oxygen and she quietly and painlessly slipped away over a few hours. Mercy. Relief. Tears and sorrow.

Last Friday, another caller was reassuring me Mum's transfer to hospital was temporary, that her symptoms were mild and her condition good. It feels like a week in the eye of the biggest storm in the world.

It will soon be Anzac Day, lest we forget. I'm not making any war analogies. The tragedy of this pandemic is its own horror. We are beating it back, confident in our united effort. It is swinging hard and lethal in return and every victim is a cherished one, taken too soon. I love you Mum.

The author of this diary did not wish to be identified