Palace of Care – What’s in a name?

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She was transferred from hospital into hospice at the end of her life and only had days left to live. End-stage cancer had taken complete control of her body. We were handed over that it was important that we respect her wishes especially when it came to calling her by her proper name. It was a name that she had to fight for, that she had won for herself, but at great cost.

Not everyone understood her wishes. When her relatives came to see her they brought old family photos, and called her by a different name. She looked different in the photos, much younger, and dressed in different clothes. We were all young once. She was becoming less responsive as each day passed and her family talked about someone who sounded different to the patient that we had only a short time to get to know.

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Guest Post – Naomi’s Notes – Time

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He was 84. He had been sick for a long time with his liver and recently had his gallbladder removed.  He was tired and grumpy as he struggled to make sense of the illness.   He was tired of taking medicine and being unwell. It was a far cry from the strong funny man that used to make his family laugh.

As a father when he made up his mind to do something he would always follow through.  Like the time he decided to take a night class in pruning fruit trees.   He would come home from class and prune all the fruit trees which were quite substantial.  The trees all had a slight lean to them and his family was not convinced he passed that class but the trees bore great fruit.  

He decided he wanted to become a welder so he enrolled in a night class and completed the course.  His family thought it was an extension of his pruning class because he did some welding maintenance around the fruit trees.  When he wasn’t watching, his children used his welding hat to play Darth Vader in Star Wars but he used to laugh when he thought they couldn’t see him. 

It was early morning when the phone rang and she knew immediately something was wrong.

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Palace of Care – Saying No – Part 3

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He was admitted because of uncontrolled nausea and vomiting. We thought it might be a malignant bowel obstruction but his bowel sounds were normal. He would vomit at least three times a day. Strangely the vomiting didn’t seem to bother him, in fact at times he and his wife seemed happy after he vomited. We weren’t sure of what was causing his nausea and vomiting, his blood tests showed evidence of dehydration, but there was nothing obviously reversible going on to explain his symptoms. He looked unwell and after a few days on our ward he appeared more gaunt. Our attempts at controlling his symptoms were not working, we hadn’t solved the mystery yet, until we noticed the half-filled blue glass bottle on his table. “Keep out of direct sunlight.”

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Guest Post – Naomi’s Notes – Mamma Mia

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It was getting harder to manage working full time during the day and caring for my mother.  The routine was I would wash her in the morning and give her breakfast and her medication then leave her a drink in a thermos cup with something for morning tea.  

My sister would call in to see her before she went to work at 10 am. My other brothers and sisters were supposed to phone her during the day when I was at work.   I would come home for lunch, give her lunch I prepared the night before, give her medication and a drink and leave something for afternoon tea before heading back to work.  I finished at 5pm but sometimes couldn’t get away till 5.30pm as I worked at the District Court and sometimes the Court sat late.

The routine worked for a while but as she started to decline I noticed little things.   I would come home for lunch and her morning tea hadn’t been touched.  When I asked her why she hadn’t eaten the orange I left her, she was embarrassed and replied, “I tried and tried but I couldn’t peel it” and she couldn’t unscrew the lid of the drink.  I felt terrible that she wasn’t able to access it.  It coincided with her telling me she was lonely when I went to work, it was a long day for her.   I looked at her beautiful face and I knew she was not one to complain but this was important to her.    Something had to change. 

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Palace of Care – Saying No – Part 2

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My usual approach to complementary or alternative therapies is to try to keep an open mind. A lot of treatments do not have much evidence-backing but can be important to the people wanting to try them. A lot of the patients I see have exhausted all that Western medicine has to offer, thus they seek alternatives. Some of these treatments may be expensive in financial and other costs. I am supportive of a patient’s right to choose whatever treatment they want. If it makes them feel better, who am I to judge?

I do draw the line if an alternative treatment is causing harm. First do no harm is the first concept they taught us in medical school, but it is not a concept taught in all therapy schools. Rarely have I directly intervened when it comes to my patients receiving complementary or alternative treatments, but that does not mean that I would not do so.

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Guest Post – Naomi’s Notes – Unsung Heroes

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He was 14 new to the area, no siblings and only his mother and him.  They had been living up north; he didn’t know why they  moved and it didn’t matter. Everything was okay until his mum got sick.  She went to the Doctor and came back with lots of medicine.   When he asked what the Doctor said she brushed him off with “nothing for you to worry about son”.  

A month went by and his mother was getting worse.  They both went back to the Doctor, he said she needed to do some tests and he gave her a piece of paper and told her she had to go to the hospital for some x-rays and some other things that he didn’t know what they meant.   The doctor would contact her when he had the results.  The Doctor phoned a few days later,  he needed to see  her.   He told her she had cancer. 

He went to school at his mother’s urging.  His mother was alone, he worried she might need something and he wouldn’t be there to get it.   She reassured him she would be fine and would text him if she needed him.

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Palace of Care – Saying No – Part 1

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In his professional life he was used to taking charge, of taking control and at times this bled into his personal life as well. His wife’s mother was unwell with widely spread cancer, she had been admitted into the hospice for symptom control of pain, breathlessness, and nausea. He had always been close to her right from their first meeting, he was probably closer to her than he was to his own parents, and even called her Mum. She had always been there for her children and their partners, and he really wanted to be there for her. He wanted to make sure that she was treated right, and he had a small inkling that his manner might come across as intimidating, but that was useful in police work. He just wanted to make sure that Mum was being well looked after, it was what she deserved.

She was a Pasifika lady in her early 60s, with end-stage cancer to her liver, lungs, and many bones. She was the frailest patient in our inpatient unit and I was worried that she might be dying. She was well cared for by her family who were always with her. Her husband of similar age, two daughters and a son-in-law, who I found out was a police officer. He had already caused a bit of a disturbance in the unit as he had spoken in an aggressive manner to some of our nurses, and was impatient. The family were all tired, worried about our patient, and stress levels were high. The family members all seemed to defer to the policeman who had taken on the role of family spokesman. The patient was fatigued but had not slept much in the past days because of uncontrolled pain. The first time I saw her I thought to myself that I wouldn’t be surprised if she crashes quickly.

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Guest Post – Naomi’s Notes – Mama

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Today was shower day. In preparation, I lit the fire and made the room nice and warm,  laid out her clothes so they would be nice and cosy to get into, just like my mother had done countless times over the years for all her children.

After showering, I raced her down the hallway in her wheelchair into the warm room and proceeded to dress her and blow dry her hair.  She was unable to transfer other than to put her arms around my waist and hold onto me as I put her into her favourite chair.

“Well,  now you have to pay me,” I announced.

She looked at me suspiciously until  I said the cost of the shower was two kisses.

She smiled and gave me five kisses and said,  “Oh I have overpaid you.”

“Don’t worry,” I replied, “I have change.”  I kissed her cheek three times;  She laughed just like she used to laugh and then I made her a hot cup of tea.  After the tea she fell asleep in her chair.  She looked exhausted from the effort of showering and slept for an hour.

When people came to visit she would try and sit up and talk with them but after a while she was just so exhausted.  Her kidney function was getting worse.

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PIANO Lessons – First meeting

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Years ago I received a cold-call email from a teacher at one of the local primary schools. Naomi Lees had read my bio on the Hospice New Zealand Conference website. This was a conference at which I was a keynote speaker. Naomi said that from my bio it sounded like we had common interests and she invited me along to her primary school’s networking meeting.

I had always loved the idea of compassionate communities and thought it would be a good opportunity to connect with one of the local communities we serve. I was keen to meet Naomi, her school principal and other community members, at the PIANO (Papakura Information and Networking Opportunity) meeting. A cool name and I wondered what kind of music we would produce together.

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Guest Post – Naomi’s Notes – Kindness

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Hi, my name is Naomi Lees, I work at Edmund Hillary School in Papakura. I met Dr James Jap a few years ago when he came to a meeting at school. I have really enjoyed Palliverse posts.  When James asked recently who would help I said I would and did nothing about it for six weeks except for the occasional pang of guilt for not doing what I said I would do.

I looked after my parents in the last two years before they died. These posts will contain some of what I learned.

So here is the first of my contributions:

Looking for Kindness

When I was at school  I was out on duty in the playground making sure the kids were safe in the playground.  Then two little girls came up to me and  one of the girls was new to the school and she was 5.  The new girl was crying loudly.   So I gave her a cuddle and asked her what was wrong  and she said to me.

“Oooh I’ve lost my friend.”

“Don’t worry,” I said, “I’ll help you to find her.”   

“What is her name?”

More tears then she said, “I don’t know.”

Then I said, “what does she look like?”

More tears then she said ………”She looks KIND.”

Bianca the other little girl who is 8, looked at me and we both smiled then I said very gently to her that Bianca knew all the kind girls so if she held Bianca’s hand and walked with her I am sure they would find her friend. Off they went in search of Kindness!

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