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

Photo by Сергей Wi on Unsplash

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 – Team

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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.

Palace of Care – Surprise!

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“Where is your pain?”

He grimaced as he pointed towards the left side of his neck.

“How would you score it out of 10, with zero being no pain and 10 the worst you’ve ever felt?”

Jaw clenched tightly he opened his gritted teeth to tell me, “7 out of 10.”

It looked more like 17.

The pillow seemed to swallow up his head. Loose skin covered his arms and torso, signs of significant weight loss.

“I’m not sure if I’ll make it.”

He was scheduled to be heading home at the end of the month, but I was unsure if he’d still be alive at the end of the week. “I don’t know either, but we’ll take it one day at a time.”

Over the next three days, he worsened each day, heading back home was not going to be an option. The family would have to bring home to him instead. They made urgent plans to travel to visit him. The clock was ticking away his life. Would they make it in time?

Yes.

Their arrival had a surprising effect.

His face brightened when they came to see him. He became more alert and he was able to recognise each of his family members.

The next day he was able to eat more food.

Two days later he walked to the bathroom without assistance.

Five days later he wanted to go to the home of one of his local children.

His family’s arrival from afar had improved his condition in ways that medications could not.

The power of love had provided him and his family with bonus time. It might not last long but they would make the most of it at home together.

He died twenty days later surrounded by his family.

Palace of Care – A Life Together/Apart

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Harsh life stuff happened and they had to part. Too many angry words exchanged when under the influence had driven them apart. It had taken him a while to realise that and by then it was too late to reconcile.

Instead, a friendship developed as they continued to parent and co-grandparent, together but at a distance. They were still a family but they no longer lived under just one roof.

With earnest intentions they made it work throughout the years. He had always been strong and active. Determined to leave his mark on the world. To grow good young people into good citizens was his life’s purpose both professionally and at home.

The quality of the family relationship was something he was proud of, and when he needed them the most, they moved into his home. As he felt weaker and more tired they were there for him. His children and his ex came back to care for him. The next generation came to visit as well. He was proud of them all, happy they had pursued university education. Most of them had completed degrees or were well into their studies.

It was confusing for his children. Over the past weeks, he had needed to sleep more. He spent more and more time in bed. The trusted family doctor thought it was due to the illness in his digestive system. Something that shouldn’t have been there having grown in a painful and bloody manner. It had sapped his strength and drained away his previously abundant energy.

He had always been good for his age. When he was young he was tall for his age. When he was older he was strong for his age. Now he felt his age. All seven decades of his life had caught up with him over the past fortnight. He was still a big man but he had been scarily losing weight.

His mind started playing tricks with him. It was like he had turned up for Maths class with only his Geography equipment. Everything didn’t fit, he felt like he didn’t belong there. When was he? Even that was becoming less clear.

“What day is it? Why are they wanting me to leave? Have I done something wrong? It’s my house. You can’t take me out of my own home. What are you going to do with me? I don’t like the way you are looking at me. Leave me alone. Go away. I need to be at school. I need to be in charge.”

Palace of Care – Singing Together

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His grandmother had never learnt English, and all conversations at home were in the indigenous language. At home, he also learnt another language, the language of song. He was one of the guitar players and could sing traditional songs in their language. It was important to pass on his culture and he became a teacher, passing on his knowledge to the next generations. His ethos was full integration, two cultures living together in harmony. That’s how he raised his children, and to provide for them, he moved overseas in pursuit of a better income.

He missed his home and he craved being able to talk in his grandmother tongue. He would visit his cousins as often as he could. Grandmother’s rules applied and only their native language would be spoken in their home. He had to translate for his wife to understand the jokes and conversations. His family ended up in both countries, and during any reunion, the guitars would come out and the favourite songs would be sung together.

The songs kept him going during the first cancer. The treatments were rough, but he completed them, and they worked. Things were different with the second bout of cancer. Nothing went well. The cruellest thing of all was the cancer’s effect on his swallowing and voice. Two of the things he loved the most were taken away from him. He couldn’t eat his favourite foods, and he couldn’t sing his favourite songs. More and more bad news from the doctors. They told him time was short, that there were no treatments left. He told them he wanted to go home, that he wanted to be with his family for the end of his life. The team wasn’t sure if he was well enough to make the trip but prepared for it anyway.

He couldn’t sleep the night before the flight home, he was too excited. He didn’t sleep on the plane. There were various delays which meant he didn’t arrive at the hospice until late evening. He was pleasantly surprised by the staff greeting him in his language. The family visited and they celebrated his safe return. He was exhausted but the thrill of being together with his family in their home country kept him awake into the early hours of the next morning.

He met the rest of the medical team the next day, and they used more words from his language. They invited him to their singing practice scheduled for the following morning at 9.15 am. They all looked surprised when he turned up sitting in his wheelchair. The assembled staff was like a United Nations assembly. Though they were all of different ethnic origins to him, they were singing songs in his language. His family joined in the singing, and then he gave his critique. “A+ for effort, just need more practice with some of the songs. It’d be better with a guitar, I’ll get my daughter to play next time.”

They made him comfortable and kept things as simple as possible. He went home to his family after joining the following week’s singing practice, this time accompanied by guitar playing. The hospice held his bed for longer than usual, but his family looked after him well and he didn’t need to go back. Generations of family and old friends visited him with their music and laughter.

The pain worsened, and he was worried that he was about to die. He wanted to go back to the hospice, he trusted that they would make him more comfortable. His family attended the weekly singing practice and were encouraged to play their guitar and sing even more. Beautiful harmonies were heard from his room in the afternoon. His family surrounded him with love and the last thing he ever heard was the harmony of them singing to him, “The Lord’s Prayer.”

Palace of Care – Questions

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“Do you all understand what is going on? Do you know what is causing the gut blockage?”

“Is it to do with the illness? The cancer?”

“Yes, that’s right. Cancer which goes to the tummy can slow down the gut, that’s why the poos had slowed down. If there is enough cancer there it can cause a blockage, which is like a blocked pipe. Whatever goes down the pipe can’t pass through the blockage and then comes back up as vomit.”

“Can you pass another pipe through?”

“If there was only one blockage they could’ve tried to do that in the hospital, but the problem is there is more than one blockage and the re-piping wouldn’t work.”

“Could you give IV fluids, would that help?”

“IV fluids is done all the time for patients with bowel blockage in hospitals. What we have found is that the fluids can actually make things worse for the person. The fluid through the vein will lead to more gut juices being made which would increase the vomiting. Also when you are so unwell the body can’t handle the extra fluid. It ends up causing painful swelling and might make the breathing worse. We don’t want to make things worse. If I thought that giving fluids would help I would do so, but I think it would make things harder, so I won’t be doing that.”

“The cancer can cause swelling right? Is there anything you can do for that?”

“Cancer can cause swelling around it which could be leading to the blockage. We can try a steroid medication to see if it would help. We’d give it three days’ worth to see if it helped, or not. Would you like to try?”

“Yeah, I’d like to try that.”

“Okay, we’ll try that. We’ll also try another medication to dry up the gut juices, to see if it would make you vomit less.”

“You all have been asking good questions. Do you have any more questions?”

“No doctor, you’ve answered them all. Thank you.”

“You’re welcome. We’ll take things one day at a time, and we’ll always keep trying to make you comfortable.”

Palace of Care – Requested Letter

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This was a first for me in my 23 year medical career. My patient’s family requested we write a letter to be read out at the funeral.

To our dear patient and their lovely family,

Thank you for allowing us the privilege of looking after you.

We know to start with you were scared of hospice and were not keen to be under our care.

You changed your mind once you met us. Our whole team enjoyed getting to know you and your caring family.

We are glad we could help you feel more comfortable, as we could see you had suffered a lot, as had your family who witnessed your suffering.

Your family had looked after you so well at home and that’s why you were able to make it to your 80th birthday. It was a testament to the loving care they provided to you.

Thank you for allowing us to look after you in your final days.

You were so unwell but we were so glad to share smiles and laughter with you and your family during your time in our inpatient unit.

Your friends and family will miss talking with you and hearing you sing, but everyone is glad you do not have to suffer any longer.

It was our pleasure to look after you and your family. That’s why hospice is here, to look after people just like you and me in the community.

We wish you and your family a fond farewell.

Kind regards,

Dr James Jap on behalf of the Hospice Team

Palace of Care – Doting Children

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“The Oncologist told us they would only live for another three weeks.”

“When was that?”

“Three months ago.”

“The good care you and your sibling provided kept them going. Now they are tired, and their body can’t handle the cancer anymore.”

“We are at breaking point ourselves. We can’t sleep well, and the tears keep coming.”

“You are both very close to your parent, you have looked after them well.”

“The last months had been hard, but the last weeks have been terrible. We have had to help with everything.”

“They are exhausted. Yesterday they told me they thought their time was short, that death would happen soon. I agree with them. We will get them through this, and get you and your sibling through this too.”

“The phlegm is causing them distress, and the breathing. They couldn’t relax last night. The medications helped briefly but then they couldn’t lie still. I kept awake too. They keep on asking for water, but it will go into the lung. Their swallowing is getting worse.”

“If it will make them feel better they can have some water. It won’t make things much worse but might bring them some comfort. If they developed an infection I wouldn’t treat it, as it might be gentler to die of the infection rather than dying of cancer. We’ll change the medications to make them more comfortable.”

“Please do, make them comfortable. Too much suffering already. They were always proud of their appearance but in the last weeks, no energy to do anything.”

“They’ve hated not being able to do what they want?”

“Yes, they even asked about assisted dying. They’ve always been so independent, not being able to do anything for themselves has been awful.”

“Natural death is going to happen soon, they wouldn’t make it through the assisted dying assessment process. They’re likely going to fall asleep soon. We’ll keep them comfortable.”

“Thank you doctor, can we stay here in the hospice.”

“Of course, you all need to stay here, we’ll look after you all.”

Palace of Care – Respect

Photo by Claudio Schwarz on Unsplash

The first clinical task of the morning was to take care of the patient who had died overnight. The family had been holding their vigil for the previous days. There had always been someone there at all times. They didn’t want our patient to be alone. Having the family staying had helped to make our patient more comfortable.

The patient had died three hours ago. Their skin was cold to touch. Pulses were absent. There were no heart or breath sounds during one minute of listening. The pupils did not react to light. Confirmation of death would be followed by certification of the death.

Cause of death was recorded on the death certificate, in as simple terms as possible. Our patient had died of metastatic cancer.

A letter was written to the general practitioner as we didn’t want there to be any surprises.

The dead person needed to be treated with as much respect as the living.

Their family needed to finish their vigil, and to move on.

The funeral director was called and they came to collect the body.

Rest in peace.

Guest Post – Naomi’s Notes – Making Friends

Photo by Jason Pofahl on Unsplash

The sound of the skipping rope whirring as it hit the ground meant their father was up.  He used to skip every day before he went to work.  

He taught his children resilience, to never give up when learning something new no matter how difficult it was. “You just gotta make friends with it”, he used to say.  

He loved his children and would try and spoil them when he could.   

He fancied himself as a mechanic and would often diagnose the car trouble as needing new spark plugs.  When asked if he had fixed the car he nodded and said  it didn’t need the key to start it, you just had to stand at the front step and clap your hands and it would come.

He was of that generation where you didn’t tell your kids you loved them but you showed them.  When his children told him they loved him it was met by an embarrassed silence.

The removal of his gall bladder heralded the start of his decline. He became increasingly ill and grumpy and as the days moved on he became less communicative.  He was always very direct in his communication. When his children spoke to him on the phone he never said hello or goodbye. He said their name and at the end just hung up.

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