Palace of Care – A difficult post to write

I started writing this post two years ago, and I tried to complete it this time last year but I wasn’t able to. I have finally completed it today, and it serves as a sneak preview chapter for my upcoming book Bedside Lessons which will be available for purchase on Amazon Kindle on 09 June 2022.

Photo by Sooz . on Unsplash

Death Jumps The Fence – I miss my mum

Every Friday I usually wear a fish neck-tie and chips socks, this is in honour of my parents who ran their fish and chip shop for 35 years. Friday was always the busiest day thanks to ancient papal decree. Mum loved to work in the shop and chatted to generations of families who were regular customers. Mum’s eyesight was destroyed by an autoimmune condition called Uveitis. This stopped her from driving her car that she had owned since it was brand new. A red 1982 Toyota Corona – Popularity has decreased since 2020. Not being able to drive limited Mum’s independence. Her partial blindness in one eye, and near total blindness in the other didn’t stop her working. Somehow she would still cross one of my hometown Napier’s busiest street to walk to the shop. She loved serving her customers and always had a friendly smile for them. Apart from rheumatoid arthritis and a blood disorder, Mum’s health was good until her final illness.

It all started early one morning, when severe back pain woke Mum up. She was rushed to hospital and couldn’t move her left leg. The initial differential diagnosis was of a stroke but the head scan did not reveal any brain issues. Further tests discovered a blood clot which had blocked the spinal artery which supplied the area of spinal cord controlling the left leg. Mum had been troubled by a blood disorder for the previous five years. This led to her blood being thicker than usual, which may have caused the clot formation. Blood thinning medication was started. Other tests discovered a suspicious mass lesion in her chest. A biopsy was requested.

Whilst awaiting the biopsy Mum was reviewed by a lung doctor who bluntly told her that she had cancer, and that she would need to have intensive treatments. These would need to be done at the regional cancer therapy centre, two hours drive away. This sent my Mum, who was always a bit anxious, into a tailspin. She stopped eating, couldn’t sleep, and was inconsolable.
Mum had a good memory throughout her life, but in the months prior to this illness she had started having short term memory loss. Looking back at this her illness had likely taken its toll on her memory. Two days after the bluntly delivered unconfirmed diagnosis Mum had forgotten what had been said, and was able to continue her recuperation. She knew that a biopsy had been arranged but could not remember what for. The prospect of it terrified her.

I flew back to Napier on a Friday morning to help Mum get through her biopsy. She was scared and needed her hand held. The radiology team who were performing the biopsy ushered me in the room, and I gently told Mum to take deep breaths. I explained to her in Mandarin Chinese, “There will be some pain from an injection. Then your skin will go numb. They’re about to put in another needle. It shouldn’t hurt, let me know if it does. There will be some pressure but it shouldn’t hurt.”

The 18 inch biopsy needle was inserted below the breast bone, aimed at the chest mass. They had to insert then readjust the needle over and over again until they had hit the right area. I had to breathe through my mouth in order to not smell my Mum’s blood. I kept on talking Mum through her procedure and the radiology team obtained a decent sample. Due to work commitments, I flew back to Auckland that afternoon. The biopsy result would be available in the following week and in the meantime the ward team started rehabilitating Mum. She had regained movement in her left leg, but she was weak and de-conditioned, still unable to walk.
Five days later my Dad called me, and told me that Mum had cancer. He did not want to tell Mum, especially given her reaction when the lung doctor had told her the other week. I agreed with the decision he made, he knew her better than anyone. Then I was called by the ward team specialist, an Older Persons Health specialist who had done some Palliative Care training. She explained that Mum’s biopsy showed a Thymus Carcinoma, which had not spread and was not causing any symptoms. She did not recommend any treatment as it might’ve actually made Mum’s situation worse. Mum already had poor appetite and radiotherapy treatment would worsen it. I agreed that watching and waiting was the best course of action.

Even though my Mum had moved to New Zealand (NZ) almost 60 years ago, she had never developed a taste for the local food. Hospital food is not appealing to most people but Mum could not eat it at all, and Dad would bring in two meals a day anyway. Functionally she was improving gradually but still could not walk independently. The ward team recommended hospital level of care. Dad wanted to take her home, he knew that he could feed her food she would like, and that home rehabilitation could be considered. After another week, Mum went home. She needed full cares which Dad provided. She responded to the care at home and her appetite returned. Over the next months with regular home exercises she was able to walk again.

Six months later Mum would be woken from sleep by pain in the left side of her chest, which the Paracetamol that she took did not suppress. I recognised it as nerve-pain caused by the cancer growing. Something that I deal with on a daily basis in my job. I had always been strict with my boundaries, and had made it a rule not to treat anyone apart from my own patients. Mum was in pain, and I could do something about it, even from Auckland. I texted her GP and asked him to consider prescribing a nerve pain agent for Mum. I made it clear that I wasn’t trying to be her doctor, but that I couldn’t help knowing what I knew. The GP understood as he had been in a similar position when his own mother had been unwell with a life-limiting illness. He said it was fine for me to advocate on my mother’s behalf, and that if I had any concerns to please text him. The nerve pain medication worked well, and Mum was comfortable. Dad was not keen on having Hospice involved yet, as he wanted to protect Mum from the knowledge that she had worsening cancer. The next six months went well, she stayed stable and was able to move around the house well. As her pain worsened her dose of nerve pain medication needed to be increased.

In the following six months, Mum’s appetite worsened, she lost weight and fatigue increased. Her memory deteriorated and she became much more forgetful and at times confused. She was becoming more frail, and needed to spend more time resting. The chest pain worsened again, Mum was reluctant to take more medications, and I had to persuade her to allow the GP to increase her doses.

I came home for Christmas with my wife and kids. I was shocked at how much she had deteriorated. Despite Dad feeding her five small meals a day, she was shrinking fast. Balance was becoming shaky, and she needed supervision with walking. Falls had been avoided but the risk was increasing. Fatigue left her either in her La-Z-Boy chair or in bed for most of the day. With my professional experience I thought that Mum only had short months left to live. This was difficult to come to terms with. Mum who had always been there for me, would not be for much longer. She looked so tired and spent.

I was about to join my family in Taiwan for Chinese New Year celebrations. My wife and kids had already been there for a month, and I was joining them for another two weeks. I visited Mum the weekend before my overseas trip, and our nuclear family went out for dinner. It took Mum so much effort to get in and out of the car. She was so tired and struggled to eat more than a dumpling. I went back to Auckland the next afternoon, to prepare for my Taiwan trip. On the way to the airport I discussed with Dad that I thought Mum’s time was short. I recommended to get Hospice involved as Mum’s pain was worsening. He agreed and I texted her GP the next day and he made the referral.

On Wednesday night, I rang Mum and told her that I would contact her when I arrived. I was pleasantly surprised that the flight had onboard internet and I was able to message Mum during the actual flight itself. My mum was prone to anxiety and would worry about my brother and I even though we had been adults for decades.

During the flight I watched the movie, The Farewell. This is about an elderly Chinese lady who is diagnosed with cancer and her family don’t tell her. They stage a wedding for her grandson in order for the whole family to come back from overseas to spend time with her. It was a bit too close to be comfortable viewing, as I knew Mum would likely die in the next weeks to months.
Next I watched the documentary, Celia, about a dedicated New Zealand child therapist and author. It was about her dying and how she spent her last months, whilst reflecting on all the good work she had done for NZ children during her careers. Another film about a dying mother.
I arrived in Taiwan, and messaged Mum to tell her that I had arrived safely. I didn’t receive a reply as it was in the early hours of the morning NZ time. Once I arrived at my parents-in-law’s home I was tired and went to sleep.

I woke up earlier than I wanted to and I couldn’t get back to sleep, I ended up watching a live Liverpool football match. The crowd sang “You’ll never walk alone,” which had become my favourite song since I became a Reds supporter. I hadn’t received any messages from NZ as it was still early in the morning. I waited until it was around 9am NZ time before I messaged my brother to ask how Mum was.

My brother messaged me back, “Mum died about ten minutes ago.”

What the hell?

I rang home and spoke to my Dad. He said that on Thursday night Mum choked when trying to swallow food and drink. She vomited through the night and became confused. Dad had rung the hospice in the morning and a nurse came to review for the first time. Admission to their inpatient unit was arranged. Mum never made it to the hospice as she died one hour later. Dad said it had all happened so fast, she’d had a terrible night, but hadn’t really suffered much before that. He said to me, “Come back and arrange the funeral.”

36 hours later I flew back to Auckland, then made my way down to Napier the next day. Once I arrived I switched into funeral organisation mode. I had previous experience having organised Aunty Helen’s and Uncle Arthur’s funerals. I designed the service sheet, chose the music (Elvis Presley+++,) wrote the order of service and my eulogy. The funeral directors were again professional and helpful. My wife and kids flew down to join me once they arrived back in Auckland.

I’d had to deliver Aunty Helen’s eulogy from the same lectern 12 years ago, and for Uncle Arthur four years ago. Now it was time for my Mum’s. I delivered my eulogy in English with my wife translating into Mandarin. I knew from previous experience that watching the photo reel would make me cry. This would be played after the eulogy, in order for me to speak clearly. I presented the story of Mum’s life illustrated with photo slides, which included images of many of the funeral guests. I had chosen the photos and words for emotional impact. This time I had taken into account the effect that it would have on me. I was becoming too good at organising funerals and delivering eulogies. I hoped that I would not have to do another one in the near future. We gave Mum a good send off, and her coffin was carried out with, “You’ll never walk alone” playing.

I stayed in Napier with my family for the rest of the week before we headed back to Auckland. I went back to work the following Monday. I discussed with my team that I would not be able to see any patients who were dying Chinese mothers for the next four to six weeks. They understood my situation and were able to help me.

A month later I was called urgently to review a patient who the nurses thought was dying. They had tried to tell the family, but the language barrier blocked understanding. I walked into the room and saw that an elderly Chinese lady was dying in bed. I explained to the family, in Mandarin, that I thought their mother/grandmother/great-grandmother was dying. I thought she only had hours to days left to live. I promised that we would get their loved one through this. We would care for our patient and her family.

Afterwards I felt okay, the case hadn’t triggered anything for me, as I had prioritised my own self-care in the weeks following Mum’s death. I had discussed my feelings in extra professional supervision sessions. My team shielding me from dying Chinese mothers for the first month had helped.

Thank you Mum for everything.

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