Palace of Care – No Warning

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I’m very sorry for your loss. If I had known how little time she had left I would’ve told you. We operate on a ‘No Surprises’ policy. We want people to know what is going on as they might have important stuff they need to do. That’s why we kept on bringing up heading South. We were worried that time was becoming shorter, but we didn’t think it would be this short.

The Oncologist had said that with treatment she might live for two years, maybe five to ten years, and some people have lived for 20 years. It was a shock this morning when you told us she might only have weeks to months left to live. We cried together this afternoon, then we were both so tired and fell asleep. Dinner had come and she was still asleep. I tried to wake her up but her breathing was strange. It sounded like how my mother’s breathing sounded before she died. That’s when I panicked and called the nurses. They came in to see her and stopped the medication pumps. A few minutes later and she was gone.

I’m so sorry. We always try to warn people when the end is near, but sometimes we don’t get any warning. We were still trying to get her comfortable so that she could travel down South as soon as possible. I’m not sure exactly what caused her death. I think it was her cancer getting much worse. The medication side effects might have had something to do with it, but likely only a small part. The only way we can find out for sure is to arrange for an autopsy, that would tell us what happened. We can make a request if that is something you and the family would want.

No, we don’t want anything more to happen to her. We didn’t know the cancer was so strong.

Yes it was too aggressive. It caused too much pain and distress. It was too much for anyone to handle. She kept on fighting it but it was too much. No more suffering, she was exhausted.

Thank you for looking after her. She really loved it here. She trusted you guys.

I wish we could’ve done more for her. We wanted to get her back down South.

Palace of Care – Preparations

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She said she had prepared herself for death several times over the past few years. She still wanted to try to live for as long as possible but if it was not to be she could accept it. She would try to sleep, try to eat, try to enjoy what she could of this life. Her brain knew what to say. Her emotional heart at times was speechless. She didn’t want to give in to the despair, but at times she wasn’t so strong. At times she wasn’t so sure she could accept things. There was so much she could not do. So many unfulfilled dreams. Too many disappointments.

Recently she felt exhausted, not because of the usual missed meals and poor sleeping attempts, it was much deeper than that. No matter how much sleep she had, she woke up exhausted.

Despite all of the above, she was more worried about her husband and how he would cope.

Palace of Care – Shorts 1

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I’m sorry for your loss.

Are you sure he’s died? I thought I saw his nose move before.

Let us check. There’s no heartbeat, no breath sounds. No eye reflexes to light. He is dead.

Tears. I can’t believe he’s gone. He was such a good man. A good husband.

A very good man who looked after his family.

The cancer came on so fast. He was often doubled over in pain. It was horrible to see him suffering like that. Then he couldn’t eat. It was awful.

Yes, it was. No more suffering now. He can truly rest.

I thought he could hold on for longer.

He tried to. His mind was strong but his body became too weak. It was too much for him to handle. How long have you been together?

43 years. I’m two years older than him. He wasn’t supposed to die before me. He looked after me so well when I had cancer.

I think therefore I am? – Chosen One

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There’s usually one person in the family who is the go-to person when it comes to anything to do with death and dying. They are the one that everyone else relies upon when times get tough. They are the one who is called when a life is at risk. They are the one that everyone else counts on to get them through tough situations. They are there to liaise with the medical teams. They will drop everything to attend to the needs of the unwell person, even if it means their own needs do not get attended to for some time. They are the one who copes on behalf of everyone else. They will translate the bad news into more acceptable language.

They didn’t get a choice in these matters. Everyone else just turns towards them. They end up being a key conduit of information, from the family to the healthcare team. They will also relay information from the healthcare team to the rest of the family. The bad news may be broken to them in the first instance and they will broadcast the message in a way that their family will understand.

It’s difficult being that person. You are so busy taking care of everyone else, that you don’t leave much in the tank for yourself. You keep on doing your assigned roles. Someone has to do it. When everyone else is busy grieving and crying, someone has to call the Funeral Director. Someone has to organise the service, the funeral booklets, what songs to play, and what speeches are to be presented. No time to grieve when there is so much to do. That can wait until everyone else is taken care of.

Sound familiar?

Palace of Care – The Butterfly

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We never met the social butterfly of the workplace who made an effort to make everyone feel welcome and included. The young lady who made everyone at work laugh. The person who befriended everyone and even their partners.

Life can be too unfair for some people. A room full of flowers, teddy bears and heartfelt messages. The love in the room was palpable. The care they provided to our patient and to each other was beautiful.

We only met her when she was critically unwell. When the illness and medication side effects had made it too hard for her to be fully herself. In so much pain that she couldn’t do the things she wanted to. Her body too distressed, making everything a struggle. Moving around the room became exhausting for her.

By the time she came to stay with us the talented artist was too fatigued to produce any artwork. The music fan with no favourite genre lacked energy to listen to her favourite songs. Not enough breath to sing along with.

Cancer can be a cruel illness that takes too much away. Potential snuffed out with too much finality. Opportunities taken away much too early. She never had a chance to grow old. She never had a chance to explore the world. Taken away in her prime, she has missed out on too much.

Some cases are just so much sadder than others. We have to look after ourselves just that little bit more. We have to be proactive in looking out for each other even more. The team looks after people well but we need to look after each other as well.

We can hardly imagine what it feels like for the parents to lose their daughter. For the siblings to lose a sister. For the grandparents to lose a grandchild. We try to understand but we don’t really know what it feels like. Taken away too soon. Our patient died and a butterfly was affixed to the door of her room.

I think therefore I am? – Choices

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For those of us working in Palliative Care, we must remind ourselves that we are only briefly there in our patients’ lives. We might only appear briefly in the final chapters if it was a book. We have a small part to play in a person’s life as a whole. We provide episodes of care which usually end with the death of our patient. Mostly this is also the end of our relationship with the patient’s loved ones. We make our decisions, offer our suggestions and give our advice before leaving for the day. Our involvement may be as short as hours to days, sometimes weeks to months, but it is a small period.

The patient and their loved ones have to live with their decisions for the rest of their lives. In the case of the patient, only a short time. For their family much longer. They have to do what is right for them. To make sure they have no regrets. To make sure that everything has been tried to keep someone alive.

Even after 15 years of full-time Palliative Care work it is still hard to step aside and let someone do something that you disagree with. You are confident you can control their severe symptoms, to provide comfort, but the patient and/or family are not wanting to buy what you are selling.

No one likes being rejected. To have their best attempts at helping not accepted. For alternatives to be chosen instead. It is hard to witness suffering and not do anything about it.

I want something else. I want to follow someone else’s recommendations.

I want to help you. I really want to help you. Please let me help you.

No. Thank you. I need to do this. We need to do this.

Don’t take it personally. You hardly even exist in their lives. It’s not about you. It’s about them, and what they want to do with what little remains of their life. They want to call the shots. To take control. Even if the only control they can take is a refusal of treatment. They are making one of the few choices they have left. It’s not about you. It’s about them. What is important to them? What is right for them?

I’ll get out of your way then.

It’s not like that.

Yes, it is. I’m getting in your way. I’m holding you up from doing what you need to do. You know where to find me if you change your mind.

It was important to keep on side with them, to show that we would listen and allow them to take part in the decision-making. That we meant what we said. You are the driver, not me.

Our patient might’ve suffered more than they had to but it was the right thing to do for them and their loved ones. They did what they needed to do. So they could live with their decisions, for the rest of their lives.

Providing patient-centred care is not easy.

I think therefore I am? – On Losses

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Being able to do whatever you want is something that we take for granted. Even simple things like walking would be greatly missed if we can no longer do them. Taking out the trash can be a burdensome chore, but you’d likely miss doing it if you couldn’t do it anymore. Wanting to go home but not being able to is something I have learned about over the past week. A cancelled flight was the cause of my homesickness. Patients may be too unwell to go home or anywhere else. Staying in hospice for end-of-life care. A trip outside to the garden can be in the too-hard basket. To be able to mow the lawn again would be a luxury for some people. To be able to wash and feed themselves would be a treat.

The loss of independence and assault on a person’s dignity. The heartbreaking moment when they realised that they cannot toilet themselves without assistance. The losses accumulate as the illness worsens. Every loss is grieved for, some for longer than others. Not being able to do what you want to, not being able to be who you want to be. Most of us have no idea of what real loss is. Quality of life is defined by each person themselves. People can get to the point when they no longer wish to live their current life. When they have had enough and are ready to die. This has usually been after a long period of consideration. They desperately wish to escape their current confinement, the prison of their own body. Each person has a limit, a point at which they can no longer tolerate the suffering of their situation. You can always tap out in Brazilian Jiu Jitsu training but in real life, it is not that simple.

I think therefore I am? – Chinese New Year Family Photos

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Chinese New Year is a time for family to gather. People make their way home from all over the world for a chance to catch up with each other. It’s a time for the annual family photo, making the most of the opportunity when everyone is there together. A rare occasion these days to have the children and the grandchildren altogether in one place at one time.

Looking back the old photos tell a story of a family’s life together. Over the years the pictures change. The parents get older. The children grow up and become parents themselves. The next generation is welcomed. The family dog looks less and less alert. The first grandchild is joined by another. A few photos later and there are more babies. The family dog disappears from the photos. The children look more tired and world-weary. The grandchildren look taller in each new photo.

The photos of the past three years looked different as many families could not gather for their annual reunion. Replaced by screenshots of virtual gatherings. Better than not seeing each other at all, but not quite the same due to lag and other factors. Not being able to taste Grandmas’s signature dish, her stir-fried rice vermicelli. Not being able to eat New Year Cakes together. No red packets could exchange hands.

As time goes by the photos will change even more. The grandparents start to look elderly. The parents start to have grey hair. The young ones may not be able to make it back due to university or work commitments. The eldest grandson proudly presents his grandparents with the first red packet he earned himself in his first year of working. Pure pride beams in the smile of his grandmother as she receives the auspicious gift.

People start to disappear from the photos as health issues start to wreak their havoc. One of the grandparent’s faces looks different after the stroke. The following year there is a gap in the space where one of the parents always stood. Two of the grandchildren will have to finish growing up without one of their parents.

The family tradition will persist. The gathering, the family meal, followed by the family photo. The life changes will continue to occur and will be writ on the faces of those photographed. The ups and downs of the year. The challenges encountered, the successes and failures. What we have gained and what we have lost all feature in these family photos.

1,2,3 everyone say, “Cheese.”

Palace of Care – Lost

Photo by Jeffrey Hamilton on Unsplash

Life-limiting illnesses are associated with many losses. Loss of control is one of the worst losses of all. As the condition progresses the losses continue to accumulate and some may be worse than others depending on each person. Things that were taken for granted are missed greatly and some of the losses can be especially cruel. Each of them is grieved over.

She loved to talk and would chatter away from morning to night, until the last months of her life. Her friends couldn’t recognise her voice when they phoned each other. Her voice sounded as hoarse as a young pop star before rehabilitative larynx surgery. Her breathing worsened and she wasn’t able to produce the volumes she was used to speaking at. As the weeks went by her voice played hide and seek and became harder to track down. Only a whisper was left, and even her family couldn’t understand what she said at times.

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Palace of Care – RIP Technoblade

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Today tragedy leaked from the internet and into my home and many millions of homes all over the world. 23-year-old Minecraft YouTuber Technoblade has died. He had written the last message to his fans only eight hours before he died. He had asked his dad to read out his message on this video. If you watch the video make sure you have some tissues at hand.

Technoblade was diagnosed with cancer in August 2021 and continued to post his popular videos even whilst undergoing various cancer treatments. With his usual generosity, he continued to share his entertaining insights with his 10 million followers.

Millions of ‘kids’ all over the world have learnt about the reality of life with cancer. Today they have experienced the death of someone who they may have gotten to know over many years of watching his videos. Grief has appeared on their drop-down menus, and they may not know how to deal with these unknown feelings. A huge reality check has occurred and the stark difference in real life is there is no respawning.

An online companion can no longer keep them company. Loss of life has led to a loss of childhood innocence. Please take care of your kids as they mourn during this sad day on the internet.