Our most important role in life is that as a caregiver.

Chapter One:

There are still blood stains on the carpet in the master bedroom of my apartment from four years ago when my dad fell and cracked his head on the side of a dresser drawer. It’s like Macbeth’s “damned spot”, something I can’t remove. The stain of my dad’s blood on the carpet like the memory of his death four years ago has faded. My grief no longer has the the feel of a jagged shard of glass cutting into my consciousness. The ache now is like my osteoarthritis on a rainy day. You can live with it and get on with your tasks.

Today, however, is November 20th. So a sliver of memory as sharp as broken glass pricked me this morning. Today is the day he began to die in 2018 and today is the day I began documenting his dying and then death on Twitter, four years ago.

The whole week of his dying I tweeted because it calmed me. I wanted to bring his followers, who are now my followers, into my dad's hospital room with me by Tweeting honestly and compassionately about his struggle to remain alive. It was a means for me to be less lonely. But also create a historical record of his passing. There was also an ulterior motive for my tweeting, the healthcare service in 2018, like today, was in bad shape. I was afraid without creating a national and international vigil during his stay in the hospital- he might fall through the cracks like so many of our elderly do during life-threatening illnesses. It was insurance to get the best attention for him.

Below are those tweets from the 20th. Until the anniversary of my dad's death on the 28th, I will post daily the Tweets I wrote four years ago while he was in the hospital. I will intercut them with observations on caregiving, the change in our politics over these last few years and how my health is in decline since his death. The role of a caregiver in the 21st century is one where the caregiver must sacrifice their financial well-being and often their health. We do it because we are responsible for those we love. But that governments and the 1% ignore the efforts caregivers provide to their loved ones who require assistance to live dignified lives while infirm is just another indication civilisation is closer to its end than its glory days.

November 20th was a Sunday in 2018. The day before I had brought my dad home from the hospital after he had spent a week trying to recover from a recurring UTI and congestion in his lungs. He had been in bad shape and in and out of hospital for that last year with pneumonia, heart arrhythmia and other ailments of age. His last book tour for Don't Let My Past Be Your Future in November 2017 was hard on him, and after its completion, he began to physically decline. I thought during the winter of 2018- I had gotten him over the worse. But things started to fall apart for us when a dog attacked me and broke my shoulder in July 2018 while I was picking up a prescription for my dad. After the attack, I found caregiving a difficult task. But I still did it cheerfully. But it upset my dad to need not only nighttime diapers but require his adult son with one hand because the other was in a sling to remove them in the morning. Or as he said, "you fix me up like a flipping department store mannequin."

I think you can understand why on November 19, 2018, I wasn’t sure if bringing him home was the right thing to do.

But the doctors said he was well enough to leave. They seemed more concerned with my well-being than his. “Are you ok with your dad coming home?” I was not certain; if they suspected my dad was dying and wanted him washed off their hands. But I knew the one thing he wasn’t getting in the hospital, which he needed if he had any chance of recovery, was sleep. The patient in the bed beside my dad had dementia. He couldn't remember the day, the month, or who his son was on most occasions. All he could remember was that in his before times, he was a racist. From morning to night, the patient in the bed beside my dad cursed and swore against anyone not white. I was told by the hospital that this patient despite his abhorrent attitudes and violent outbursts couldn't be moved as there were no other beds available in the hospital. The shrill voice of this man was breaking my dad’s resolve to get better, and I feared that this patient with dementia might even harm my dad physically.

So, I brought my dad home. However, by early morning on the 20th, it was apparent to me he shouldn’t have been released. At 5 AM my dad called out to use the washroom. Groggy, I got up from my bed to assist. He apologised as always for needing me which made me sad. I helped him put on his slippers and then assisted him to his walker.

I thought he was fine and moved out of the way to allow him to manoeuvre to the bathroom. Sleepy, I looked away for a second, maybe a minute and when I turned to look at him again. He had raised his walker above his head and was falling back towards the dresser drawers. My dad looked like a ship sinking from a torpedo attack. Now he was on the ground, his head bloody. But he was laughing and rambling incoherently from fever. I got him comfortable and called the paramedics.

When they took him away, I wondered if he would live to see the night. When I arrived at the hospital, a nurse let me see my dad, who was struggling for breath and very ill. I kissed his forehead and sat close beside him, and -at that moment I took over his Twitter account.

8:31 AM · Nov 20, 2018

This is Harry Leslie Smith's son, John. Harry is in A & E and not in a good way. He asked me to inform you in case things don't work out. I will keep you posted.

11:26 AM · Nov 20, 2018

Just an update: Harry is hypotensive and on fluids and drifts in and out of consciousness but is breathing well with oxygen Waiting for the cardiologist to report.

1:09 PM · Nov 20, 2018·

I told Harry before he fell into a deep sleep about the concern rippling across Twitter for him, and he said to me, "tell them, I love each of them so much."

1:50 PM · Nov 20, 2018

Blood pressure will not rise and sits at 77/37. Harry woke- for a moment and said, " tell them I've kept my pledge." And then he falls asleep again.

2:32 PM · Nov 20, 2018

Now a drug Legvo, something or other, to raise his bp. Nil by mouth. So I wet his lips with a small sponge soaked in water.

2:46 PM · Nov 20, 2018

He sleeps deep, his legs jerking like he's riding a bike And, I wonder if, in his dreams, he's seven again and riding on his uncle's bike from his grandparents' house to the moors, where he felt free from the sting of his poverty. ( I would later learn the jerking movements in his body were caused by the steroids in the nebulizer that was attempting to keep his lungs free of mucus)

2:59 PM · Nov 20, 2018

The cardiologist walks by his observation room; says he will be with me shortly. But I already know that Harry's heart has been taking a beating since his pneumonia in January as well as having a persistent UTI, since September. So, I wait -knowing that his body is very tired.

3:12 PM · Nov 20, 2018

The cardiologist says it might be another pneumonia or bladder infection causing low BP. But his tone errs on the side of pessimism as to how this ends for Harry.

3:34 PM · Nov 20, 2018

They've put him on an adrenaline IV to raise his blood pressure. Poor sod, all he wants is a cup of tea. BP up a bit

3:40 PM · Nov 20, 2018

Since my brother Pete's death- 9 years ago, I have been at Harry's side and never absent from him for more than a day. We laughed, we argued, and we learned from each other. I became his friend while still letting him remain my dad.

3:44 PM · Nov 20, 2018

Harry's BP is 99/53 through adrenaline treatment. He's in serious but I believe "stable condition now. The cardiologist believes he has an infection going on somewhere and is being treated with antibiotics. He may be admitted to the ICU but are waiting to see if he responds to meds.

Several months ago, I asked Harry what I should do if he became incapacitated by illness, and he said, " tweet about it, regardless of whether the end is happy or sad."

5:00 PM · Nov 20, 2018

Right now; Harry is in a hospital in Ontario Canada where like the NHS, healthcare is free at the point of use but also under threat of privatisation from right-wing forces.

5:03 PM · Nov 20, 2018

I need to do this because it keeps my thoughts from racing as I am alone with Harry in a darkened room with illuminated monitors, streaming out information I don't understand. We have shared so much together.

I am ok. However, there is a loneliness to standing vigil.

5:17 PM · Nov 20, 2018

I get the feeling- that in this hospital room tonight, I am watching history die here: my own, Britain's and even Canada's.

5:22 PM · Nov 20, 2018

A portable X-ray machine arrives at his emergency room cubicle.

5:24 PM · Nov 20, 2018

A fire alarm drowns out all of Harry's monitors. His door is closed, and through the cutting clang, he sleeps while his mouth expels air out like a man doing lengths in a pool.

5:42 PM · Nov 20, 2018

My mum liked to read me the poems of Goethe, and the words from the Erlking are stuck in my head right now.

5:47 PM · Nov 20, 2018

I haven't given up, but I know Harry's taken a bashing over this past year and at 95 he has few reserves to draw upon.

5:53 PM · Nov 20, 2018

Playing softly to him the Audibles edition of Love Among the Ruins while he sleeps.

6:04 PM · Nov 20, 2018

It looks like it's pneumonia, from aspiration as he's had a massive build-up of mucus in his bronchial tubes for 6 weeks now.

6:11 PM · Nov 20, 2018

Just waiting for Harry to be transferred to ICU from emergency. But it could be hours because the health system is stretched to the limit. I shudder to think what 4 years of Doug Ford is going to do to public health care in this province.

6:44 PM · Nov 20, 2018

I am so pleased Harry got to be loved by others because my greatest fear when Pete died was that he'd be forgotten and think his life had been worthless.

6:47 PM · Nov 20, 2018

Thank you all for keeping vigil over Harry with me. It truly is less lonely this way for me.

6:52 PM · Nov 20, 2018

I don't know. I watched Harry battle sepsis 6 years ago and pneumonia in Feb. But I watch him now like someone on shore who sees a ship, with loved ones on it, being battered by waves and storms, and there is nothing I can do.

I remember as a young boy of 7 asking Harry while he put me to bed about what his life was like as a lad. It was then that I first learned about his sister Marion and her end in a workhouse infirmary.

7:29 PM · Nov 20, 2018

He wakes and asks for a cuppa. I tell him the doctor has a nil-by-mouth order and place a wet sponge on his lips. "I am afraid to sleep," he says because I don't want them to forget my lunch." He hasn't eaten in 24 hours.

7:33 PM · Nov 20, 2018

He's got a lot of mucus in the bronchial tubes when he coughs, I suction the sputum from his mouth.

I made a pact with my brother Pete before he died at 50, in 2009, from pulmonary fibrosis that Harry's end would never be like his beginning, in 1923 in the slums of Barnsley. Whenever that comes, he will go with love, sorrow, and hope.

8:09 PM · Nov 20, 2018

After being examined by the ICU doctor, Harry exclaims, " I can assure you, I am not ready to die because I have too much work to do."

8:56 PM · Nov 20, 2018

The update from the ICU Doctor: Harry is moving in the right direction -still critical but not acutely.

9:01 PM · Nov 20, 2018

Harry, in his voice, has ordered a DNR when questioned by the doctor.

9:03 PM · Nov 20, 2018

I am feeling slightly more optimistic that Harry will survive the night- and that is a start.

9:19 PM · Nov 20, 2018

In a moment of fever, last month asked. "These last years, I did something that mattered, didn't I?" My heart broke.

9:27 PM · Nov 20, 2018

Harry's kidneys are holding up high creatine levels of 200 but holding.

9:30 PM · Nov 20, 2018

I've been at Harry's bedside since the ambulance picked him up at 6:30 am or 16 hours ago. But I had to step outside of the hospital to feel the cold, black air coming off the Bay of Quinte and revel in the silence of the parking lot.

9:54 PM · Nov 20, 2018

All is quiet, and Harry sleeps.

11:13 PM · Nov 20, 2018

It is after midnight here, but I think he will see the morning and then we will go from there.