I think therefore I am? – Butterfly visitors

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Photo by Marian Brandt on Unsplash
  1. Reincarnation was one of the topics of conversation in the first room this morning. Our patient was a believer and had told his wife that she would come back as a dog. Unfortunately one of their daughters had died only a few years ago. It is always difficult for parents to deal with, as it goes against nature’s order to have a child die before a parent. One of the tragedies in life that elderly people would like to avoid if at all possible. Their daughter had died but had left her traces everywhere.

She had always loved butterflies, and had grown lots of swan plants in order to provide food for her favourite Monarch butterflies. She had a keen eye for their caterpillars and could see them from a distance, their yellow, black and white lines indicating their presence. She especially loved the pupae/cocoons that would form as the caterpillars went through the biggest changes in their lives, metamorphosis. Coming out the other side of the process transformed, with a new outlook on life and the ability to fly. Looking so different in colour scheme and features. She had always loved to have butterflies around. In some cultures it is believed that butterflies are visiting dead friends and family members who have come to see you from the other side of the grave. This is a comforting thing to have your ancestors come to see how you are.


Our patient had been steadily deteriorating over the past week, and he and the family had derived some comfort in being visited by Monarch butterflies. It was thought that their late daughter/sister was visiting their father as he entered his final cocoon state, just before dying.
I told them that when people die in our hospice we would affix a butterfly to the door.

I have often drawn cocoons on our patient list board to indicate that people are undergoing the final transformation in their life, the dying process. One in which everything starts to wind down, the heart, lungs and other organ functions change. A person becomes sleepier, and less clear in their mind, Nature or a higher power’s way of protecting the dying person from the full experience of dying.

“Please keep on talking to him, he can hear you, but might not be able to respond to you.”
Family members were considering leaving for home to come back again soon, but I advised that he could die at anytime, and that traveling under lockdown restrictions was not as easy as usual. Probably better to hang around and support each other for a few more days.

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I think therefore I am? – Collegial Jealousy

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Photo by Obie Fernandez on Unsplash

One of our most trusted employees doesn’t mind doing night shifts. He is happy to do casual shifts with little prior notice. He is adept at looking after all sorts of different people. He can be counted on to be there, although he can be fickle at times. He picks and chooses who he will spend time with. One day it might be in the older lady’s room, another night he might wander off and into the young man’s room. He doesn’t even knock, and somehow can sneak into the rooms without anyone noticing.

One of our patients thought that our staff member was channelling the essence of their late mother. Every time our staff mate visited the patient in their moments of need, it felt like his mother coming in to check on him, from the next plane of existence. This provided comfort to both patient and family.

Our valued employee had a new assignment the other week. Our patient was the mother who was not long for the world. Our staff member took especially good care of her, and also her daughter as well. Having him in the room provided them good continuity of care, as otherwise there was a new set of nurses every shift, and the doctors would change around every few days. They enjoyed his visits and his words of wisdom lightened the mood and their hearts.

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I think therefore I am? – Dropped

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Photo by Rod Long on Unsplash

I feel so lost, I feel so alone, aren’t I good enough for you? What did I do wrong? Why did you change so suddenly? I thought you’d always be there for me. I thought you’d have my back.

Many different people may be felt to be the other, this can have a racial basis, or be on a religious basis. People are labeled as other to justify treating them badly, and this is an unjust situation in this day and age. What other justifications are there for bad treatment of our fellow humans?

Palliative care patients may face stigmatisation for being closer to dying than most people. Oh well they’re going to die anyway, so why should we bother taking care of them? Just shove them in the corner and pull the curtain around them, and forget about them. Out of sight and out of mind. Not my problem mate. Who cares they’re dying anyway, not worth me expending any effort on them. I beg to differ, dying people deserve even more respect, as they are about to leave our planet, off to somewhere else, destination unknown. What will happen next? I don’t know.

It hurts to be rejected, to be pushed away, sometimes literally pushed away. I don’t want anything to do with you. Please leave, bad enough when you are trying to find a date, but when you are at the end of your life, how much more hurtful could that feel?

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Palace of Care – PI – Palliative Investigator

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Photo by N. on Unsplash

She was one of our community patients, a lady in her early forties who had been deteriorating over the past week. We were able to control her physical symptoms well but there was a deep underlying sadness deep inside. She was able to accept that she was dying, that she would be leaving behind her 18 year old daughter and her husband. That was not the cause of her upset, our counsellor went to see her at home to see if she could find out what was going on.

What was causing our patient so much anguish? She was well supported by her husband and daughter, and other family members were helping too but as our patient became less conscious her agitation and distress worsened. Was it an end of life delirium or was there something more going on? Her husband said that she was still looking for Mary.

Mary? Who is Mary?

Our daughter.

But your daughter is not called Mary.

Our older daughter.

Oh we didn’t know you had another daughter.

She was stillborn when we had her 20 years ago. We were young and didn’t have enough money to properly bury her. We only had a few hours with her before they took her away. We never found out where she was buried. We looked for the first two years but our English wasn’t as good back then, we had just moved over from the Islands. We never found her, but we’ve always missed her. Especially my wife.

There was a mystery to be solved, I had to find out where baby Mary was buried, with only her full name and date of death. I had no idea how to start the search, so I asked around my colleagues. Thanks to everyone who suggested that I contact the local council. A quick search of their website found a section where you can search for burial locations online yourself. This did not yield any results, but led me to another section of the website that allowed me to send a query email.

A few days later a real human answered, and suggested that I email someone else. Two days later I was sent a reply with a picture of a map of the cemetery with a highlighted area within which the baby had been buried. I printed out the map and our counsellor rushed out to deliver the information package to the couple. Time was of the essence as our patient was deteriorating rapidly and was in danger of losing consciousness and clarity.

Two days later our patient died peacefully at home with her gathered family, her distress had settled down once she was told that Mary had been found. The bereaved husband’s were red and swollen, but he smiled when he told us that his wife knew where to find their long-lost baby and could pick her up on their way to heaven.

Guest Post – Naomi’s Notes – Petticoat

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Photo by Nick Fewings on Unsplash

It was my mother’s birthday.  It was a cold, bleak winter’s day.   I had put on a nice warm woolen skirt that my friend had given me which belonged to her mother.  It was a bit big on the waist but was okay.  I wore it to work.  After school I rushed to buy some flowers  to take to the cemetery before it closed.  

When I arrived I was the only person there, and I quickly arranged the flowers on my parents’ grave.  I stood back to admire the flowers and my thoughts turned toward my precious mother. It was starting to get dark, I felt sad as I walked back to my car. I remembered happier times on my mother’s birthday.  

Suddenly I felt very cold, I thought to myself  the temperature had plummeted.  Then I looked down and saw that actually it was my skirt that had fallen down and I was standing in the cemetery in just my stockings with my skirt on the ground.   

I started to laugh and laugh and laugh. Then I suddenly realised if anyone saw me in my stockings  laughing so loud in the cemetery they would think I was having an ‘episode’ so I quickly put my skirt on and walked slowly to my car.  

Then I noticed the security cameras.   I raised my handbag to my face to save myself some embarrassment  and walked faster to the car.   I smiled to myself as I drove home as I remembered what my mother  had said to me when I was young ….”Always wear a petticoat.”

I think therefore I am? – Holding Hands

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Photo by National Cancer Institute on Unsplash

There is nothing wrong with holding hands in hospice. The problem is when that is the only treatment that you have to offer.

When modern hospice started there may have been less that could be done for patients thus holding hands may have had to be one of the only treatments available. If they couldn’t control your symptoms then at least you didn’t have to die alone and having someone hold your hand might provide some comfort.

Hospices may have started off as places where semi-retired doctors, nurses and others might go to work when they were wanting an easy job at the end of their careers but modern day hospice requires staff who are willing to continue learning, to grow their skills and knowledge as palliative care situations have become increasingly complex situations. Due to advances in medical treatments people are living longer than they ever have before. The silver tsunami is the greatest achievement of modern medicine, people are able to live to old ages.

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Guest Post – Naomi’s Notes – Appreciation

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Photo by Aude-Andre Saturnio on Unsplash

They were a big Samoan family who supported their mother’s decision to not undergo dialysis for her kidneys. She had no appetite for her favourite foods and the level of care was entering into an unknown realm.   In the distant past the caregiver had done some volunteer work for Hospice and thought this might be the answer to the problem.  

A family meeting was called and Hospice intervention was discussed.  The siblings were unanimous in their decision.  No Hospice, they viewed it as a betrayal and a failure on their part that their mother would be under the care of strangers instead of within her own family.  The siblings were having difficulty accepting the stage that their mother was at.   

Christmas came and she was very ill, she tried to make an effort to enjoy the day for her children.  Her grandchildren carried her outside into the Marquee for Christmas dinner. 

She didn’t want to spoil the day for her children.  They took her back to bed after a couple of hours.   She was too exhausted to sit up any longer.

Two days later she was in hospital, unable to communicate.  She sat and stared into space.  In the morning she woke up and pleaded to go home.  

Without consulting anyone her caregiver made the decision to request palliative care through Hospice.  By the time the discharge from hospital was completed, the hospital bed had already been delivered to her home.  Pain relief had been organised to ensure there was no breakthrough pain.

The family  had been standing alone with care of their mother and initially viewed Hospice as a  “us or them” situation. The siblings  quickly realised it was more  of a “we are on the same team” situation with a wonderful wrap around service.

The experienced nurses provided kind compassionate loving care. The family wanted  the best care for their mother and thanks to Hospice they got it.

I think therefore I am? – Hearts and Minds

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Photo by Jon Tyson on Unsplash

To do palliative care and hospice well your heart does need to be in it. People can easily tell if you are not really there. It doesn’t have to be as obvious as someone who won’t sit down, or who constantly checks the time on their watch. Do you have somewhere more important to be at the moment, than in my room? Something more important that needs to be done than listening to me?

If someone’s heart isn’t really in it people can tell right away. The lack of attention that is paid to simple things. So we do want people to be engaged to actually care for people. It does need to be done professionally, with kindness and respect. People need to have firm boundaries that they do not cross. It’s about protecting yourself and also the person that you are working with. You can be friendly but cannot be their friend. You can be caring but it must be in a professional manner. We are guests in their lives, and we do not want to disrupt pre-existing relationships.

We are involved possibly in the final chapter of someone’s book of life. It is not about us, but about them. They are the stars of their own show, of their own movie, of their own stories. We are only extras, or play a tiny bit part. We may have only a few lines to say, and we will try to say them well. The direction of the story needs to be guided by the person going through it all. We would not be in the same room as them if they were not sick, if they did not need the care that we can provide. We must never forget that, that they are not here because of us, but that we are all here because of them. The patient needs to be at the centre of everything that we do, not their family members or friends but the actual person themselves.

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PIANO lessons

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Realisation

Photo by Anastasia Kalinkina on Unsplash

I arrived around the same time as the Eat My Lunch delivery arrived. This was a local social enterprise which had been set up and the concept was that if you bought a lunch, the company would provide a lunch to a student in need. The company had delivered some school lunches to be distributed to the students. From one of the other network attendees I learnt that the school also provided breakfast for the kids as well as lunch. The lady said that she helped with the breakfast serving at least once a week. She admitted to initially being against the idea, that she had believed that children’s nutrition was supposed to be under the remit of their parents. Over time she came to the realisation that due to personal circumstances this was not always possible, and that providing children with one or two meals a day really enhanced their health, and their learning ability. Since then she happily reported to duty each week, and sometimes even filled in shifts for other people.

Disconnection

Photo by Erik Mclean on Unsplash

A family had come back recently from the Islands, the husband was unwell with metastatic cancer. The teacher asked if the patient was under hospice. I thought that service was only for Palagi – The foreigner – the white people. Despite us having been the hospice for the local area for the past 35+ years local people still did not know that we were available to help our local community members regardless of who they are. A gap that we still haven’t been able to bridge despite many years of trying to connect. What we had done over the past three decades just wasn’t working. We need to try something different. The same old, same old just doesn’t cut it any more. What else can we do to make the connection? That we are here for people just like you. We have been trying to recruit to reflect our local demographic. For our staff to look like our community, and we are hiring for inclusion to encourage diversity of thought at all levels of our organisation. People like us look after people like you, we are one and the same.

Traumatisation

Photo by Andre Benz on Unsplash

The family had lost their father and husband due to a brutal act of violence at the local train station. His life was cruelly stolen from them, and the grief was too much for them to handle. They were lost, set adrift in a cruel sea of grief, with no land in sight, no hope of rescue. Every week they would visit the site of his death, the mother and the children, would weep and could not move on with their lives. This important local community hub held onto their agony with an iron grip. A local amenity that could not be avoided, became not just a place to catch a bus or a train, but a deva-station. Transporting them to a painful past, a tormented present and an uncertain future.

Advance care planning week – webinar for consumers

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Come along to talk to Dr Sonia and consumer Holli about advance care planning during Advance Care Planning week 2022. 11:00 24th March online