“I’m just checking in with you. How are you today?”
“I’m too tired to fight today.”
“Me too, you really made me work hard yesterday.”
“I would really like a massage. Healthcare has under-utilised the benefits of therapeutic massage.”
“I’d agree with that. It is one of the alternative therapies that has been proven to make people feel better. A lot of the Pasifika cultures use massage as part of their healthcare systems.”
Nod.
“Us humans require physical contact. We don’t hug each other enough.”
His long arms tried to stretch outwards, but they could only move centimetres towards me due to weakness.
My arms went around what felt like a skeleton’s back. Sarcopenia is the medical term for the muscle wasting I felt.
A gentle embrace was shared. He was too weak to hug me tighter. I didn’t want to hurt him.
Followed by a firm handshake, our left hands surrounding each others’ right hands. All four hands shaking together.
The smiles in our eyes met each other. Retinae looked directly at retinae. A human connection was maintained but it was destined to be disconnected soon.
Our kindred bedside manner DNA started to unwind. One strand would come to an end soon, whilst the other would continue on.
He thanked me for the care provided.
I thanked him for his time and for the fun memories of our playing and joking together.
We shared a smile before we waved ‘see you later’ to each other.
Life can be full of uncertainty and the same is true for dying. When will it occur? The doctors don’t really know, they can only give their best guess. The ones who give an exact time are likely out of their depth and answer with false confidence. Three weeks. Three days. Three hours. Medical science is not that exact yet. Maybe someday there will be a test that will tell people exactly how long they have left to live. Not available yet.
Sometimes people will say their goodbyes too soon. They carefully choose their words as it might be the last time they ever see each other again. Could it be the final farewell? Yes, it could be. We’d better say what we really need to say just in case it is the last chance we ever get. A final chance to connect with a loved one. A final chance to heal or to hurt. A final chance to say what a person means to you. A chance to wish them all the best for the future you won’t be a part of. A final chance to share one last rendition of a long-standing private joke. One last hug. At least you had a chance to see them before it was too late. Not everyone makes it in time, which has been particularly painful in these COVID-affected years. So close, but yet so far. So much suffering.
Why do we leave things unsaid until we know a person is dying? Could we have told them the truth earlier when we were both fit and healthy? All of us who live will at some stage die. It could happen to any of us, not everyone gets the chance to say goodbye to the important people in their lives. Sudden deaths can happen without any warning. Accidents happen all of the time through no fault of anyone. What would you regret not telling someone today, if you were to die tomorrow? Death could happen to any one of us, at any time.
If you both can still see each other the next day, consider it a bonus.
They had been a team for many years. It all started when they married. They raised their children well, and eventually became grandparents. That’s when everything started to change. He started to lose his memory to Alzheimer’s Dementia, his body was still in good working order. She started to lose control of her body to Multiple Sclerosis, her mind was still in good working order. They managed to cope well, making up for the other’s disabilities. She was the brains of the team and he was the brawn. They did well for the first three years and then their illnesses took away the last of their independence.
His cognitive impairment worsened and one day he decided to leave the house by himself. He drove off leaving her and the children to search for him. They called the police to help, but he could not be found until two days later. He was befuddled and unkempt when they found him. His main job before retirement was as a taxi driver. Despite his various impairments, he could still drive safely.
Her physical ailments worsened. She had become doubly incontinent and now needed full assistance with her activities of daily living. She suffered from recurrent urine and chest infections, which required hospital admissions. She had needed to be admitted three times in the past six months. The hospital team had asked her to complete an Advance Care Plan – ACP on the previous admission. This had been a difficult exercise but an important one. She was able to make it clear what she wanted and didn’t want. She had decided that if she developed another life-threatening infection, she would not want anything apart from comfort treatments.
I met her during the current admission. She had become unwell over the past week with aspiration pneumonia due to her poor swallowing. Fevers and shortness of breath were the main symptoms. Though the ACP had been completed and loaded onto the hospital system it was still ignored. IV antibiotics were given as well as fluids. When she woke up she was angry that her treatment wishes had been ignored. She had spent a lot of time preparing her ACP and it gutted her that it seemed to have been a futile exercise. She made it clear what she wanted and did not want. She asked for all treatments to be stopped, she had had enough.
I had been meaning to write the following blogpost for the past weeks and decided to do it today. I was also inspired by a LinkedIn post from a writing community co-member to try out ChatGPT the AI Author bot from https://chat.openai.com/chat. Here’s a comparison of what I wrote in one 25 minute Pomodoro and what ChatGPT wrote in 25 seconds.
A too late early Christmas Present – by James Jap – 25 minutes
Communication had become difficult and was another thing that cancer had robbed her of. She had lost her voice and had to write words down in order to communicate.
She had tried various methods from good old paper and pen, and had settled on a whiteboard and a set of markers.
This worked well enough but due to her condition at times the whiteboard would become wet and then the markers could not write clearly. Waiting for the marker and the board to dry off meant a delay in communication.
Simple gestures could be made in an attempt at impromptu sign language but it could not convey what she wanted to say.
She could mouth words and some people were better than others at reading lips but this was not something that could be counted on.
I had enjoyed getting to know her and we had exchanged witty banter between ourselves.
I would say something.
She would write something funny in response.
She made fun of my hairstyle. She talked about my bathroom habits and my general appearance.
I talked about referring her to our physiotherapist to help with mobility and to help with clearing chest secretions.
She wrote, “I don’t want them thumping me.”
I replied that I would not let our Physio-terrorist do that to her.
She raised her eyebrows in quizzical fashion.
Despite severe pain she never lost her sense of humour.
Christmas was coming up and I wanted to surprise her.
I had seen some electronic notepads in one of those stores that used to sell books, I think people in the past called them bookstores. I made a plan to buy one for my patient.
I thought that having something with an LED screen that could be written onto with a stylus could be handy for her, and it could be erased with the press of a button.
I went out to search for this little notepad but not being an experienced shopper I made a number of mistakes.
I knew there was a bookshop nearby in the local mall, I headed out to the mall, and then could not find the bookshop. In the three years since I had been to the mall, the bookshop had closed down.
I looked for other bookshops but then smartened up and looked up where I could buy the electronic notepad from a local shop.
I found it and proceeded to the shop, I asked three people for their assistance but no-one was able to help me.
The fourth person at the customer service desk confirmed my worst fears, they were out of stock. But I could go across town to their other branch which had stock.
Off I went with my phone’s battery running out, making GPS a soon to be unavailable feature. For some reason traffic is busier in the weeks before Christmas. Shops are also busier and people seem more stressed and less friendly.
I arrived at the other store branch and again asked for assistance showing the store worker a picture of what I wanted to buy. He was helpful and led me right to a shelf which contained non-electronic clipboards.
On his second attempt we found the electronic notepad I had been searching for. Success at last. I tested it out, I could write on it easily with the supplied stylus and it erased with the touch of a button.
I presented the electronic notepad as an early Christmas present to my patient, and showed her how to use it. She thanked me in writing and I said I would catch up with her the next day.
The next morning I went to see the patient but the electronic notepad was not in sight. The old whiteboard was there.
Had my early Christmas present come to late to be of use?
My patient was much slower to respond to any questions, and even had greater difficulty in writing. She had deteriorated overnight and was not her usual self. Her usual quick wit had slowed down markedly and she was not as clear in her mind as she had been just yesterday.
A lot can change in a day in a palliative care setting and here was a clear example of the change, she had changed cognitively overnight and was not longer able to use the electronic notepad.
I worried that this meant that she might only have a short time left to live, and this was conveyed to my patient and her family.
A too late early Christmas present – by ChatGPT Dec 15 Version – 25 seconds
It was the first week of December and Lucy was already feeling the holiday cheer. She had always loved Christmas and the excitement of gift-giving and receiving.
This year, she had decided to surprise her husband with an early Christmas present. She had found the perfect gift, a new set of golf clubs that he had been wanting for a long time. She wrapped it up carefully and placed it under the tree, planning to give it to him on the following Saturday.
However, on Wednesday night, Lucy’s husband came home with a big grin on his face. He had received an early Christmas present from his boss at work – the exact same set of golf clubs that Lucy had bought for him.
Lucy was initially disappointed, but she couldn’t stay mad at her husband’s excitement. They decided to return the duplicate gift and use the money towards a family vacation instead.
In the end, it turned out to be a blessing in disguise. The family enjoyed a wonderful vacation together, creating memories that they would cherish for a lifetime. And when they returned home, Lucy’s husband was still grateful for the thought and effort that she had put into her early Christmas present.
They were supposed to be touring Europe at this time of the year. The tickets had been booked and a deposit had been paid for before the first bout of illness. After he had recovered from it they sought medical advice on whether or not to travel.
“It’s likely to never happen again. Stick with your travel plans.”
After much consideration, they decided to cancel their trip. Their deposit was lost but they felt they couldn’t risk him becoming unwell overseas.
Five weeks later their decision proved itself to be the right one. His illness recurred and MRI scanning revealed a likely brain tumour. Plans were made to take a biopsy, but this was thought to be too dangerous to attempt due to breathing issues. The Oncologist reviewed all the results and the decision was made that treatment would not be helpful and that they should prepare for his death.
It was the worst possible news but they took it on board with their usual pragmatism. They wanted to be prepared and started planning his funeral. They chose the funeral director, it wouldn’t be a religious service but the choice of music was important. He had always loved singing along to his favourites. It had to be the right song for him. They wanted something which would fit with his views on life and death. Something that resonated with him.
They had in mind Judy Garland’s version of “Somewhere Over The Rainbow.” They were discussing the song choice with the hospice doctor when she suddenly pointed at the wall.
“Look, over there.”
Outside of the room, hung from the skylight window, were several crystals. Somehow through a wonder of reflection and refraction, a rainbow was being projected onto the wall of his hospice room. They had chosen the right song.
He sang along to the song as it was played. The mobile phone owner described herself as, “too pragmatic to cry.” Tears streamed down his cheeks, as he wondered if he would be granted his dying wish.
In the last days of her life, she was visited by close friends and family members. She conversed with them and still shared her sense of humour with them. To some of her oldest friends, she said her final goodbyes.
One of her best friends asked me if it would be okay for her to have some champagne. I said I would allow it but she wasn’t allowed to drink alone. He went off to buy some. It had to be Tattinger Champagne, nothing else would do. I said she could eat whatever she felt like. A question was asked about cigarettes and again I had no objections. She was dying and she could do whatever she liked that would bring her some pleasure and normality.
“How can you tell that time is short?”
“She’s been deteriorating every day. She has become unclear in her thinking and is needing to sleep more. These are all signs that death is coming soon.”
“How long do you think she has got left?”
“A few days ago we thought she might only have days to weeks left to live. Now I think she only has hours to days left. She could die at any time.”
“Who do you think can come and visit her.”
“I’d recommend only immediate family only and her closest friends. Whomever she wants to see.”
“Will you let our brother know?”
“Sure, we’ll make contact with him.”
The next day four members of the hospice clinical team painted their nails yellow and orange to match their patient’s fingernails. When she woke up she was shown the photos and she was able to enjoy the yellow-clad doctor’s finger and toenails which were all highlighted in bright yellow. The nails gave her and the family something to smile and laugh about in between the tears.
The next morning the Polish team, who were not from Poland, were about to go into the room when the nurse came out to ask the family to come in urgently.
“She’s about to take her last breath.”
The clinicians made way for the family.
She died with the voices of her family telling her how much they loved her.
We didn’t know what was keeping him going. He hadn’t eaten anything for ten days. No drinks for days. Somehow he was still producing urine. Where did it come from? His son speculated that he was drawing the water out of the room’s atmosphere. “Dad’s become a dehumidifier.”
He had outlived many doctors’ prognostication attempts, including my own. “Anyone else would’ve died a week ago. He’s not anyone else he’s stronger than most people.” Somehow he had stayed alive with his metastatic cancer for four years. He had received multiple treatments over the years. They had kept him alive, but the last three months had been a struggle. He had lost 20kg over the years of illness. 10kg had been lost in the past three months because of severe nausea.
The cancer was cruel as it melted his body away it took away his appetite. His once mighty frame was reduced to skin and bone. He still wasn’t used to his reflection, it had continued to change. Despite all of the weight loss, one thing he never lost was his sense of humour.
In life he had always done things in his way, at his own pace and it was no different in his death. The family maintained their long vigil, and he remained mostly asleep but responsive when he was awake. If our staff found evidence of his imminent death we would inform them. We also warned them that sometimes people don’t want anyone to be around at the point of death and that he might slip away when an opportunity presented itself.
He was kept calm and comfortable. His family were supported and our patient died three days later.
“I’m sleepy and tired, that’s what I do. I sleep most of the day and the night.”
“Do you have any pain?”
“No, the pain is well controlled. The urine is still bubbly. Why is that?”
“Your cancer has caused a connection between your bowel and bladder. It’s called a fistula. It’s a sign that it is getting worse.”
“Yes, I am getting worse. I felt so unwell the other day. I thought that my end had come. I just felt so deeply tired. I couldn’t get out of bed for two days. My family and the hospice staff thought I was going to die.”
“Then you woke up again today?”
“Yes, and I’m going to spend some time at home. How long have I got left?”
“I don’t know. I thought you were days away from dying a few times over the past weeks. You keep on proving me wrong, over and over again. You’re stronger than most humans. I think you’re the strongest person I have met in my 15 years of working in palliative care. I don’t know how you do it.”
“I don’t know either. I feel so tired, but I keep on hanging on.”
“You’re being yourself. I wish I could be more accurate with your timeline. You are deteriorating but your willpower is still strong, but your body is fading.”
“Yes, my memory has gone, and I talk to people who are not there, sometimes for a long time.”
“Is that distressing you?”
“No, it isn’t too bad. I can handle it but I get irritated sometimes.”
“Let us know if it gets too annoying, and we can adjust your medications.”
“Okay.”
“You enjoy your time at home. I’ll see you tomorrow.”
palliverse.com 