Tag Archives: connection

Palace of Care – Fields of Gold

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Photo by Lars Schneider on Unsplash

I heard that he actually had children but there had been a falling out some years ago. I never found out what the details were but it sounded as if there was no way to mend these relationships. It was as if he no longer had children, it was something that we couldn’t talk about. His speech became less easily understood if the topic was raised at all. The closest family he had was his niece. She was devoted to his care and visited regularly, as she had done when he was at home.

Everything had become a struggle before his admission to our inpatient unit. We provided basic nursing care with only a small amount of medical support and he had responded well to being looked after. He accepted he could no longer live alone and his family found him a hospital-level care facility close to where they lived so they could easily visit. On the day he left our hospice for his new home, I wished him well.

Just over a month later he came back for a visit. This time he brought his closest friends and family, including his two children. I’m not sure what had happened but they were all there together. There was warm friendly chattering going on in the lounge. Food was being shared while he held court. He was in fine voice and he enjoyed entertaining everyone who had gathered. Many of his guests said thanks to him for all that he had taught them over many years, in some cases a lifetime.

His daughter had prepared a song, and decided to sing it to him while he could still hear it. She played backing music with her smartphone and sang “Fields of Gold” the Eva Cassidy version. Everyone in the room was moved by her song, as her father sang along. Sometimes healing can occur at the end of life.

I think therefore I am? – Natural Order

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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 – No place like home

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The trip home was great. He enjoyed it a lot. I was happy that I could help make it happen. He had not been home for weeks. Spending a few hours at home meant so much to him. He kept his eyes open the whole time, enjoying things as much as he could. Being able to see our home again was so important to him and to our children. When we came back to hospice he was exhausted but kept on smiling.

A lot has happened this week, he only stopped working on Monday. He had to tell his boss that he couldn’t work anymore. A big deal for him as he dedicated so much of his life to work. If he didn’t work he just didn’t feel like himself, it was the cause of a lot of our disagreements.

Yes, our church father did visit and anointed him. He can be contacted at any time. How much time do you think he has left? Only a few days? That’s what I thought. Please keep him comfortable, that’s all we want at this stage of his life.

Thank you.

Palace of Care – Gotta Work

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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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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 – Connections

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This afternoon I lectured on Resilient Leadership at a university executive MBA course. I spoke for 50 minutes on the leadership journey I had been on over the past nine years since becoming Medical Director. I talked about the ups and downs I have had to work through and the importance of leadership and resilience. I shared several stories as real-life examples of doing the right thing. Not the easy thing, but the right thing can be very hard at times. Declaring that you are patient-centred cannot just be a fashionable but tokenistic slogan, you have to mean it. You have to prove that you support patients’ right to choose, not just in terms of assisted dying, but other treatments and procedures, which may be invasive or have burdensome side effects. Patients and their families may need our advocacy, and support with decision making.

I allowed for 10 minutes of question time at the end and some thoughtful questions were asked. As I was wrapping up the hour-long session one of the audience members waved and caught my attention. I thought he wanted to ask a question. He didn’t have a question but instead wanted to thank our hospice for providing end-of-life care for his late brother. He said that his mother was especially grateful for the care received. A humbling moment and a reminder that the world can be a small place in which a lot of people are connected in various, often unexpected, ways.

So ends Work Day 20. I think I’ll take the day off tomorrow.

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.

I think therefore I am? – Mother’s Day

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Happy Mother’s Day to all mothers out there. A day when we celebrate one who may be one of the most important people in our world. This can be a happy occasion but it can also bring sad memories to those who no longer have a mother. A time when the grief is stirred up a bit more than usual. Memories of the loss of a parent churn from deep inside us. For some, the loss is all too recent, all too raw. You didn’t want her to suffer one minute more but you missed her even before she had died.

She wasn’t her usual self any more. She couldn’t be there as she always had been countless times before. It was hard to see someone so strong become so frail. She had always been of slim build but the weight loss was too difficult to bear witness to. Her severe fatigue made you wish you could gift her some of your energy, but you knew she would never take it. She had trouble being the one who needed care.

She always served her customers well. Put them at ease with her gentle words and friendly smile. She enjoyed seeing the children grow up, just like her children had. From needing everything done to full independence. They had all become adults and parents themselves but she couldn’t help still wanting to take care of them. Nothing changed at the end of her life, she took care of her children and her grandchildren. She wanted to do her best for them, as she always had.

Even after I am gone.
I will still be with you.
A tiny bit of me will live on.
Inside of you my child.
Know that you are loved.

Palace of Care – Timing

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Where do you think you are at?

I’m so tired, it’s no good.

What did the hospital doctors tell you?

It was always bad news. Every time they came in there was more bad news.

One thing, after the other. It would be hard to keep up.

Yeah, it was.

Did they talk about how much time you had left?

No. They wouldn’t tell us.

They fobbed you off?

Yeah.

Would you like to know how much time you have left?

Yeah, please.

How much time do you think you have left?

Not much, I feel so weak. Days?

I think you’re probably right, maybe only days, but it could be much faster if the changes continue. You had a fever last night.

My legs and tummy are swollen too. The doctors talked about something called albumin being low.

Albumin can be a marker of how well a person is, normal levels are 35, yours is much lower.

I feel better since I came over to hospice. Being able to go outside is so good, I hadn’t been outside of the hospital for two months.

Is there anything else we can help you with?

Do you guys have any Coke, in a can?

Sure, we’ll arrange for some Coke for you. Ice?

Yes please.

Just let us know if we can help you with anything else. See you later.

Thanks, see you.

Palace of Care – Family Vigil

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I know you want to try to be with him the whole time but it is taking its toll on you.

Yes, my sons are worried about me, they don’t want me getting unwell too.

Yes, your husband would be worried about you too. He knows you have been here with him throughout this whole time. He might not be able to respond to you, but he knows you have been looking after him.

That’s what my sons and friends keep telling me too. I just want to be with him as much as possible, I think I can hold on a little longer. I didn’t get much sleep last night. I’m a light sleeper. Every time he made any sound I woke up.

Yes, you’ve been looking after him well but you look exhausted.

When his breathing changed last night I really thought he was about to die. I called my son in and he stayed with us. Then the breathing settled down and I told our son to go home and sleep as he had to work the next day. He went home at 2am. My other son is going to come back tonight.

That’s a good idea, to take it in turns. Your sons are looking after both of their parents. They can spend some time with their Dad too. If we see any signs that he is about to die we’ll call you back in, we always try our best to do so. Sometimes we don’t get any warning, but we’ll keep looking for signs.

Okay, it’s good that you will call.

Some people do wait until there is no-one left in the room before they go. That’s what happened with my Aunty. Our whole family made sure that she was never alone in the last two days of her life. She was only alone for five minutes when my other Aunty went to the toilet and that’s when she died. She was still trying to look after us all. I’ve seen it happen with so many families over the years. He knows that you’ve been with him all this time, deep in his heart he knows you’ve looked after him well. If you don’t enough rest he’ll be worried.

I’ll talk about it with my older son when he comes in later. He said he would stay tonight.

Okay, you try and get some rest.

In the early hours of the next morning our patient’s sons called the nurses in when they couldn’t hear their father’s breathing. The nurse confirmed that our patient had died. His wife wasn’t able to be with him at the time of death but she was picked up by her son and came in to help change him into his selected clothes.