Palace of Care – Accelerating towards the finish line

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Photo by Daniel Lloyd Blunk-Fernández on Unsplash

The poor old lady had been through a lot in recent years. Cancer had treated her harshly, and had spread through major organ systems, her liver, lung, and most of the bones in her body. A cruel disease that robbed her of her independence, and dignity. The years that she had the cancer had been relentless, multiple lines of treatment including chemotherapy, radiotherapy, targeted therapy. Despite all of them the cancer continued to progress, to cause havoc, and to ravage her body, and eventually her mind.

The past month had been the worst time of all. Her final decline started with a fall, it was not clear why she fell but she ended up fracturing her wrist. A painful injury that caused her to cry in agony. Her lower arm was placed in a cast for comfort and to give it the best chance to heal. Three days later she fell again, with her other hand outstretched, causing another wrist fracture. Two forearms were now encased by fibre-glass casts. This rendered her unable to wipe her bottom or wash herself. Increasingly dependent she had trouble feeding herself, the casts were of the light weight sort, but when your illness has stolen away precious muscle, the additional weight made brushing her teeth impossible.

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Guest Post – Naomi’s Notes – Grelly

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Photo by Jana Sabeth on Unsplash

She called him Grelly when she was young because she couldn’t say Grandad.

He used to pick her up every day from Kindy.  Always the same routine when she got to her Mama’s house. She would sit next to Grelly and he would let her dunk her biscuits into his cup of tea.  He didn’t mind if her biscuit fell in.

She entertained them by reciting the poems and songs she had learned.  She loved it when they joined in and sang with her.  Grelly would let her be the boss of the TV remote and watch her programmes with her.   She didn’t mind that he didn’t know the words to Spongebob Squarepants because he made up for it by dancing with her when Bananas in Pyjamas came on.   When she was sick he would phone her and tell her he and Mama were missing her. 

When he became sick, she would rush in to see to see him. She would kiss them both and show them her drawings and tell him what she had done at Kindy.

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I think therefore I am? – Yearning for connection

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Photo by Toa Heftiba on Unsplash

What this palliative care doctor thinks:

It’s not just about language, that’s why Google translate can’t replace human interpreters at the moment. It might be able to translate the words literally from one language to another but it doesn’t yet have the cultural context of where the words came from. The history of the language has not been programmed into it. Take English for example a lot of the words we use are derived from French and other Latin-based languages. You don’t ask for sheep meat, you ask for mutton from the French mouton. Similarly beef, not cow meat, from the French boeuf. A translator program is not the same as an interpreter program. Google Interpret would have to be much more sophisticated and would need cultural programming as well as linguistic programming.

A person may be speaking Chinese, but they are also living Chinese. The food that they eat, the clothes that they wear. Rituals that they follow to celebrate life, and how they deal with death and dying are the missing parts of a person’s identity that cannot be easily translated.
The most important tool I have as a palliative care doctor is my ability to communicate. I make a point of greeting my patients in their native language as much as possible. My accented version of their language is my attempt at providing them with a hint of familiarity. In the area I work in people come from all over the world, from lots of different cultures, with over 200 different languages spoken in our area. I certainly do not know all the greetings that are available but a quick Google search can provide me with at least a few words of greeting. A little demonstration of respect that I have made the effort to try to connect with another human being. It may have taken me ten seconds to type in my query but it can often bring a smile to a weary sufferer, whose illness has taken over their body. Someone for whom English may be a second or third language. A little snippet of home, can make a real difference.

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Palace of Care – Smiley

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Photo by Jacob Vizek on Unsplash

I had finally completed my examinations and could start my specialist training. I had been drawn to both Medical Oncology and Palliative Medicine from a relatively young age and I could try working in each speciality for six months before deciding which one I wanted to pursue in the long-term.

One morning during my six months working in Medical Oncology I was in clinic with an Oncologist who I considered to be my mentor. Standard practice was for me to see the patient first, then present the case to my mentor, who would then come and see the patient.

A big friendly smile in the form of a slim 26 year old man walked in with his pregnant partner of similar age. They were accompanied by his cousin who was in his 40s. Smiley’s story was a sad one and had begun eight weeks prior to his clinic appointment. Life was good, he had a steady income from a job he enjoyed. In the weekends he loved playing rugby in the local team. He and his partner had been together for five years and were going to take the next step. Baby was on the way, and was due in five months’ time. Everything was going well until it wasn’t.

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Palace of Care – The T-Shirt

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Photo by Toa Heftiba on Unsplash

My consultant asked the young man, “What would you like us to call you?”

He answered, “Your highness.”

“Okay your highness, how have you been?”

That was an entertaining start to the therapeutic relationship which put everyone at ease, and allowed for an air of playfulness to come into the clinical encounter. The patient was in his late thirties and had come into hospital with severe pain. It was likely due to cancer metastases, and he was still recovering from his last cycle of chemotherapy when we visited him.

He talked about what was most important to him, spending time with his young son. This was whilst he was carefully mixing flax seed oil into a serving of yoghurt, as part of a cancer treatment diet that he was trying. He would try anything to keep himself going and wanted to spend as much time with his son as possible.

Despite all the treatments that he had received the cancer continued to progress causing ever more problems. The side-effects of the aggressive treatment were severe and included the loss of his hair. He said that he had always had good hair, and it was one of his personal trademarks since he was a teenager. Now he didn’t mind losing his hair, and he had even designed a t-shirt for the sake of entertaining himself and those who looked after him.

He loosened his dressing gown and revealed his creation. In bold font it simply said, “Hair by Chemo.”

Palace of Care – The End of the Race

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Photo by Cedrik Wesche on Unsplash

She had always been a strong lady, throughout her whole life. She may have done things slowly but always in a methodical fashion, and if it was done by her, it was done well. As it was in life, so it was in death.

Anyone else would likely have died a week ago, but she was holding on as she had too much to live for. She worried about her husband, physically he still looked like he had for the past twenty years but his ability to think and remember had started fading years ago. She had looked after him well, and had to increase her efforts since the dementia started to steal him away from her. He was still polite and kindly, but at times he would forget who she was, and would forget who he was too.

She had been told that the grandchildren were on their way back from overseas, she wasn’t able to acknowledge this. She was mostly unconscious, but would occasionally stir when being turned or when fed small spoonfuls of water. This was done with a special teaspoon which had a hollow mesh structure and the handle served as a straw.

The middle grandchild would arrive that evening, and she would do her best to hold on despite apnoeas of up to 15 seconds. The grandchild arrived and required Rapid Antigen Testing before we would let them in, a negative test would mean it was okay. The swab was taken and processed, the timer was set, 15 minutes before the test could be verified. Time drags on when you are waiting for something.

Tick, tock, tick tock.

A negative RAT test allowed the grandchild to reunite with their grandmother.

Phew….

Our patient died six hours after her reunion with her grandchild.

The eldest grandchild was still making their way back from half the world away and arrived 14 hours after our patient’s death.

RIP Strong Little Queen

Palace of Care – Race Against Time

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Photo by Shirly Niv Marton on Unsplash

I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.

She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.

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Guest Post – Naomi’s Notes – Contribution

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Photo by Jarritos Mexican Soda on Unsplash

When we are born we come with nothing and we go with nothing. In between we try to make a contribution to our family, community and the world around us.

The transition to becoming a caregiver is difficult, the biggest challenge is going from having lots of time for yourself and an ability to make plans, to having no time.  Much like a mother I guess. I was given a ringside seat into old age and death.  Watching the decline, you are forced to confront the mortality of your loved one as well as your own.

High dependency needs mean that no matter how much you love the one you are caring for you get very tired.  The forced isolation can be lonely for a lot of people. My experience wasn’t so much the loneliness but more the loss of “me” time.  Early in the caregiving role when I was able to go out for a couple of hours I would joke with my friends that my visa was up and I had to get home before my visa was cancelled.

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Palace of Care – See the difference Mum?

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Photo by Amir Esrafili on Unsplash

The other doctor was Asian too, but he had such sad eyes.

I said to him, don’t look at me with your sad eyes.

See mum, he just told me really bad news, but he did it in a gentle fashion.

That’s the difference compared to the hospital doctors.

He sat down, talked to me, we had some laughs.

He prepared me for the bad news and then delivered it, and didn’t run away.

Sat right in front of me, asked me if I had any questions.

The others sort of threw the bad news at me, and then ran out of the room as if they’ve just thrown in a grenade.

Danger, danger, gotta get out before it explodes.

Hot potato, pass it on, quickly or you’ll burn your hands.

I can handle the bad news, I’ve had plenty of it. Where’s the respect, you just tell me the worst thing in the world, and then you run off as if you are the one who is hurting?

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Pause Program for Carers – Matisse Alive

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Matisse Alive

This program has been developed specifically for those who are supporting a person receiving palliative care.

You’re invited to take some time out for a mindful journey through the Matisse Alive exhibition, where you can explore guided slow-looking techniques and discuss observations and insights in a paced experience.

It’s an opportunity to engage with art and with your own feelings in a supported environment; share experiences with like-minded people; acknowledge your identity apart from your caring role; and enjoy ‘in-the-moment’ pleasure. You’ll also discover how mindful activities can support self-care, and learn skills and strategies that can be transferred to the care environment.

The experience is facilitated by artist and researcher Dr Gail Kenning and Danielle Gullotta, senior access programs producer at the Art Gallery of New South Wales.

The program is a partnership between the Art Gallery, Palliative Care NSW and the University of the University of Technology Sydney.

Saturday 12 March 2022, 9.30am – 11:00am

Art Gallery of NSW, Art Gallery Road, Sydney NSW 2000

Entry is free, bookings required