Category Archives: carers

Palace of Care – Making the most of it

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Photo by Charity Beth Long on Unsplash

After the death of her younger relative, she did not expect to be in the hospice again. She had been impressed by the care provided for the family. She was surprised to be there one month later. This time she was admitted as a patient for end-of-life care. She accepted this with no fear, she had been unwell for three years with her heart and lung issues. A previous gut issue had recurred and could not be overcome. She knew that she was dying and in some ways, it was an escape from her years of struggle and further suffering.

Returning to the same hospice, with the same family members less one member. Not the same as the last time she had been there. The perspective on the other side of the bed was different. She accepted her situation, she had been expecting that something like this would happen soon. In some ways, she had already prepared herself. Her world had been shrinking for some months because of her physical frailty. She was glad she had deteriorated whilst she was still visiting and staying with her family. If this had happened at her own home, she would have been alone, and far away from her support network. Instead, she had spent weeks with her favourite and most loved family members.

The lunch she was served was the best thing she had eaten all month. The hospital food and service just couldn’t compare. She asked if some of her family could stay with her overnight. This would be no problem at all. She fully intended to enjoy the next few days recounting family stories and looking through photos together. A chance to say goodbye before the inevitable happened. She was going to make the most of it.

I think therefore I am? – Natural Order

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Photo by Tolga Ulkan on Unsplash

Her first experience of the hospice was when she came to visit a younger family member. Someone important enough to travel over 1000km to see, despite her poor health. Her life had become a struggle over the last three years. Her lung failure had caused heart failure. Shortness of breath made even walking difficult. Leg swelling caused leg heaviness which made walking torturous at times. Over the years she had collected health problems but managed to continue with her life. Her relative had only been unwell once, and the illness was taking her life away. A sad time for the entire family, especially the elders. It is against the natural order of life for a child to die before a parent, but when you are elderly already it must be so much worse.

Palace of Care – Gotta Work

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Photo by Kyle Hanson on Unsplash

He loved to work. He said it made him happy. He said it took his mind away from what he was going through with his illness. The doctor had given him bad news. Time was going to be short, possibly only weeks left to live. He still wanted to work, he had asked his boss to bring in a laptop, and other work equipment. He said he wouldn’t do too much work, and that if he was too tired he would stop.

His wife looked doubtful and talked about trying to spend all her time with him, but he chose to work even when she was there. This was something that she couldn’t bear to watch. It had happened too often. She wanted me to tell him to stop working. I couldn’t tell this dying man not to do something that would make him happy. I tried to negotiate a compromise between them.

“I’m not here to tell you what to do. You’ve been told you might only have weeks left to live. How you use your time is up to you. I can’t make those decisions for you. You need to think about how you want to spend whatever time and energy you have left. I’m here to take away whatever stress I can. I don’t want you two arguing at this stage of your relationship. Why don’t we try to balance things out more? Your wife needs to take a break, maybe go home for a few hours a day. Why don’t you work when she has gone out? When she comes back, then it’s time to stop working. Do you both think that will work? My staff and I will keep an eye on you, we don’t want you overdoing it, and if it looks like you are exhausting yourself we will tell you to work less. Thank you both for agreeing to try this out. I will be checking in with you both, to see how much breaks/work you both have/do.”

I wasn’t sure how well it would go. It is hard not to be yourself after a lifetime of being in the role. People stay true to themselves right to the end. That being said just in the past days he had agreed to be baptised into his wife’s life-long religion. A huge change for a man who had been an atheist over his adulthood. I would try to keep an open mind and see what happened next.

Palace of Care – Nice To Meet You

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Photo by Tiago Fioreze on Unsplash

Hi, nice to finally meet you too, Doctor.

No need to apologise for the colours. My wife has always loved bright colours. When she couldn’t walk around anymore I planted extra plants to brighten up her views. From our bed, she could see all the different flowers that I had planted outside the window. She liked to sit in our living room and from her wheelchair, she could see all of the flowering winter plants I had planted for her. The colours of your scrubs are very welcome here.

How did we first meet? After university, I went to work for a large steel company. All the company workers and their families lived in the company complex. It was like a city, 50,000 people lived there. In this area, there were 45km of railway lines. I lived in one of the buildings for single males, in a serviced apartment. We were well looked after. We didn’t have to cook, all meals were provided in the company dining halls. I liked to play the card game Bridge and I joined the company tournament. During one of the first matches, I beat my opponent by 25-0. If you know Bridge that is the highest score possible. I must have impressed her with my Bridge skills or maybe it was my long hair. Whatever the reason, my future wife started to ask me out.

My wife’s family worked for a subsidiary of the company. She was born in the city, went to the company school, through university and then was employed by the company as well. We had good times working there, but we wanted something different for our children, which is why we moved to New Zealand.

My wife is amazing, she’s so strong and has lived with her cancer for over seven years. She’s had so many treatments and some of them were so hard to go through but she was so determined to stay with us. Things have been tough at times but we have been happy. During these years our eldest child was married and now is a parent of our three beautiful grandchildren. Last night I missed out on a party. The family were singing my wife’s favourite songs. They were using a banana and a hairbrush as microphones. They had a good time and were all laughing so much.

Thank you for your time as well, and it was a pleasure for me to share our story. Good memories.

Yes, my hair is naturally wavy. I decided to grow it long again, while I still can, just like it was when we first met each other.

Thanks again for all your help and care. See you later.

Palace of Care – Somewhere Under The Rainbow

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Photo by Harry Quan on Unsplash

She looked familiar but I couldn’t place her. Her dress was made of fabric which included all the colours of the rainbow. She said she wanted to tell us all a story and that she would try not to cry.

My husband knew he was dying, we both did. He was trying to decide which song to have played at his funeral. Somewhere over the rainbow came to mind but he couldn’t decide. Some time later when he was admitted to hospice the topic of song choice came up again. It was a sunny day and the light through the skylight shone through some crystals which were hanging from the ceiling. Projected onto the wall of my husband’s room was a rainbow. This confirmed the song choice as the right one.

Some months after his death, I missed him terribly and I would still talk to him as if he was still there. One afternoon I felt particularly low and I begged him to show me a sign that he was still there with me. The next day my neighbour showed me a photo she had taken the day before. It was a photo of our house, and above the house was a rainbow. Since then I have printed out and framed a copy of the photo and have hung it up on our living room wall. Whenever I need to talk to my husband I talk to the photo of the rainbow.

Palace of Care – Looking Ahead

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Photo by Arthur Ogleznev on Unsplash

Everything can change so quickly, often with no warning. We can’t prepare the family when we are unprepared ourselves.

He had come in to sort out his pain. Bowel motions were excruciating for him. He had needed laxatives to keep him regular. He had decided to stop his laxatives. No more bowel motions meant less pain he figured. Less pain, less need for pain relief, less side effects. It made good sense to him, and initially, it had worked. It couldn’t last though, what needed to be expelled could not be kept in. When it did come out it had dried out and caused even worse pain. He finally accepted our offer of admission.

The assessing doctor found out the patient had haemorrhoids – painful swollen blood vessels which would be worsened if he had hard dry poos. The fix was to soften them up and make them easier and more comfortable to pass. It took five days to achieve this and heading back home after the weekend looked like a distinct possibility.

After the weekend he looked good. He had taken some successful leave periods at home when the family were off work and school. The next day he was different. He was slow to answer and his replies were in a confused manner. He complained that he couldn’t pass urine. He had repeated bladder scans which didn’t find a full bladder. His pain was worse, he also felt nauseated. He appeared to be in a bad mood and was not as friendly as usual. He was more withdrawn and needed to sleep more. Blood tests were taken in an attempt to find out what was going on.

Severe kidney failure was what the results showed, a life-threatening deterioration, that would likely lead to his death. He was clear he did not want to go back to the hospital. He didn’t want to stay in hospice. He wanted to go home. He couldn’t wait until the doctors came to see him, he had to go home as soon as possible. He’d spent too much time away from home in the last few months.

The doctors went into his room and our patient had gone “AWOL!” He couldn’t wait for the ward round he needed to go home as soon as possible. The team arranged for some urgent prescriptions as we didn’t want him to end up in strife. Good teamwork made it happen.

We received word from his family later in the afternoon that he had died. How had he known?

Palace of Care – Nothing is certain

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Photo by Suzi Kim on Unsplash

Our worst suspicions were confirmed by the virtual clinic appointment. The bad news that we had expected had eventuated. No further treatments were available because of progressive disease. The news caused her to shut down and to shut down our attempts at communication. She became quiet and wanted to sleep more. She seemed to be distancing herself from the world. She didn’t want to see her baby. It was as if she had given up on life.

How long she had left to live was uncertain. We thought it could be as short as weeks, but it could be much shorter or longer depending on her frame of mind. Had all her hope been taken away? As cancer grows the problems it causes usually worsen. Pain increases, energy decreases, and fear can balloon. What was the right thing to do? To encourage her to live whatever life she had left? We thought she still had things to live for, especially her baby. What did she think? For some patients dying as soon as possible may spare them from too much suffering.

We needed to check with her what she wanted. We needed to find a way to ask her, but first, we needed to re-establish our connection with her. She asked for us all not to come in and we respected her wish. She allowed us to talk to her family as she did not want to break the bad news to them herself. We would try to talk to her more during the weekend when there would be much fewer staff members around.

Palace of Care – The Christmas Night Markets

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Photo by Ross Sneddon on Unsplash

The Christmas Night Markets brought thousands of people to our hospice grounds and stallholders to our basement car park. There was live music courtesy of a guitar-strumming singer who sang Christmas carols that we all knew the words for. It was a family event with many generations represented. I usually only go shopping once a decade, but tonight my inner Ebenezer was silenced and money flew out of my wallet like butterflies searching for sweet nectar.

I usually go with my family but this year my wife was busy, instead my daughter and her friend came along. They were both looking for presents to buy for their mothers. This event was the latest edition of a community engagement project. The aim was to invite people into our hospice grounds, to get to know us a bit better.

Lots of families attended and shared food. Some of our patients from our inpatient unit came down with their family members. I caught up with three families who had come back. All of them were different in many ways but they all shared something in common. Each of the mothers of the families had died in our care.

A little boy lined up to buy churros with his father who reminded me of Hercule Poirot. The boy’s primary school school had visited a local amusement park the other day. He looked well, had grown a little bit since I’d last seen him and he was as smiley as usual.

A young lady had finished high school for the year. Her father was still as friendly as ever and shared a laugh with us. He’d met my daughter before when he had last visited the hospice. She had introduced herself as the new Director of Nursing.

A local politician introduced me to his friends. He told me that his mother had died almost three years ago. This made his eyes glimmer briefly and he had to blink fast before the surface tension of his tears broke. I realised it had almost been four years for me, which made me gulp down my own emotional response.

Time can fly and life goes on, but it sometimes feels too strange. We all missed our mothers in different ways. After Mum’s death, things had never been the same again for any of us.

Palace of Care -The After School Run

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Photo by Andrew Slifkin on Unsplash

A situation familiar to many modern parents. Making their way through rush hour traffic to pick up their children who possibly attend a number of different schools spread throughout busy cities. The GPS recommended fastest route would only work if your car could sprout wings and fly over traffic. Another of the more stressful times of the day, the morning school drop-off being the first one. You finally arrive at the school gate and then the stress levels increase even more. Hundreds of similar parents vying for a small number of legal car parking spaces. Scanning the roads surrounding the school for a hint of a place to stop. Trying your best not to run anyone over, having to make your way around cars that have double or triple-parked. You make your way onto the grass berm next to the road. You pull your handbrake to immobilise vehicle staking your claim to this treasured location. You rush out of your car and sprint towards the school gate as if you are about to complete a marathon. Exhausted, about to collapse, running on sheer willpower alone. Next up for this sporting event is trying to find your child in a sea of other children wearing completely the same clothing. The good old bastion of conformity the school uniform. A blur of green and blue as children walk, run, skip on their way out of school. Is that my daughter? Is that my son? No, that kid just looks like them. No, that’s one of the more vertically challenged teachers. There’s my precious. As time is running out you haul them over your shoulders in a fireman’s carry and race to your car. Buckling them into their car seat as if it was straitjacket. Only three more to pick up….

Stressful enough on any standard school day, the school pick-up becomes even more stressful when the other parent is dying in the local hospice inpatient unit. At 4pm every afternoon the children of two different families would arrive to see their unwell parent. Typical Kiwi kids wearing a number of different school uniforms. Various lengths of hair, various ages and stages, brought together for the same purpose. Trying to spend as much time as possible with a parent who might not be around for much longer. A heart-warming sight but at the same time heart-breaking. In the future these school aged children would likely remember visiting their parent at the local hospice. I hope that their memories aren’t too bad. I hope it wasn’t a scary place for them. I hope that they felt welcomed. I hope their family tells them later on how meaningful their visits were for their late parent. I hope they are told how much their parent loved them and had tried their best to stay alive as long as possible, much longer than most people did. How their parent held on for their birthdays, their first day of school, or for their graduation and other important milestones. I hope they can remember the happier times when one of their parents wasn’t dying and they always did things as a family.

Every birthday from now on, there will be someone missing from the celebration. Christmas and New Year will not feel the same any more. Life will go on but it will be different. Who will take the kids fishing for eels? Who will teach the kids how to drive? Or how to cook? Or how to sew clothing? Someone will be missing when they turn 21. If they get married, someone else will walk them down the aisle. The youngest kids might not remember much about their parent at all.

Please make the most of each day. Time with children and family is so darn precious.

Palace of Care – Healing in the Hospice

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Photo by Riho Kitagawa on Unsplash

I’ve had relatives who’ve come in before but they never made it out, they died after a couple of weeks. When he was asked to come in we were pretty nervous, we didn’t quite know what to expect. Yeah, we were scared. We had to do something though. His tummy pain was real bad, but it was his anxiety and panic attacks that were the worst. He’d freak out and I didn’t know what to do. I’d freak out too. His pain was controlled after a couple of days in hospice, then his panic attacks settled down. This was despite having received the worst news ever, that he had cancer.

We didn’t know they were looking for cancer during the last three months. We thought they were trying to find out why he was constipated. We didn’t know why he had lost 30kg of weight. He had always loved food but then he had no appetite. The poos kept on changing, sometimes hard, sometimes soft, sometimes with blood. They stuck a tube up his bum to have a look but they had to stop because the sedation they gave him almost killed him. It was a shock when the hospice doctors told us that the other doctors thought he had cancer.

The other great thing about being here in the hospice is that it is neutral ground. It was safe for him and his ‘niece’ to meet up here. You allowed us to have some space and they were able to start talking. Yesterday they ended up just going to a cafe together and they sorted out the issue between them that had kept them apart for decades. He’d done some stuff in the past. He’d done his time. Coming here to hospice allowed them to heal. Deep healing of the spirit happened yesterday. He came back a changed man. A father and daughter were able to connect with each other, to start to build a relationship that had been broken for years. It was good for the grandchildren to see this happen. It’s good for the whole family. We couldn’t have done it without what you have provided us here. It means so much to us. Thank you so much.