Palace of Care – Fields of Gold

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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.

Palace of Care – Making the most of it

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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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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 – 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 – Shared Decision Making

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With advances in medical technology and treatments, there may be a lot of management options available. Whether any treatment is the right thing to do for the individual patient in front of you needs to be carefully considered. It may be easier to do something, rather than explaining why not doing something is the better option. It is best if a person can take part in the decision making but they don’t always have the opportunity as they may be too unwell.

He’d had many procedures and treatments over the past months. Some had been beneficial, others not so much, all of them painful. He was becoming better at saying, “No.” If it would improve his quality of life he might consider it, but if not he couldn’t see the point. He was already in a lot of pain. He couldn’t keep down his food let alone any medications. They didn’t work anyway. Maybe he had been too subtle with the doctors. They all seemed willing to help and had consulted other colleagues in the hospital to access further investigations. He wasn’t sure if he wanted them. There had been so many this year, and each of the results had indicated that everything was getting worse. He didn’t need it to be confirmed in a written report, he felt it in his bones, the deep fatigue that gnawed at him. Reducing him more each day.

Maybe tomorrow he would tell them how he truly felt. If he could get a word in…

Palace of Care – Somewhere Under The Rainbow

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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 – 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 – Limited Options

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He had felt trapped for two months. He had not felt sunlight on his skin for so long, his Vitamin D levels were depleted. The rest of his body had lost its reserves. Things had been touch and go during treatment for his first cancer, but this time around everything had been much worse. He couldn’t remember when he last felt himself. It seemed like everything that could go wrong had gone wrong. He had reached breaking point, he had to leave the hospital prison, even if it meant considering transfer to hospice.

He hadn’t had personal experience of hospice but people he knew in his homeland had given him a bad impression. He asked his wife and son to check the hospice out, to see if they would be suitable or not. They came back and have their approval, he decided to go for it. Then he had more bleeding, this held up his transfer a few more days. By this time he was ready not just to go, but to let go of life. All he wanted to was three things. To be outside and to feel grass underneath his bare feet. To taste his favourite fruit again, green apple. To eat an ice block. His digestive tract had been replaced by thousands of ulcers, gut rest had been ordered. This had been almost worse than being sick. Being ravenous but not allowed to eat or drink anything. Hunger and thirst tormented him night and day. Everything felt as black as what he had been vomiting up.

He wanted to go home, but everyone thought it was too hard. His family and the medical teams, they all thought it was a bad idea. He knew he was unstable, they had told him about how little time he had left. He had heard it all before during the treatment of his first cancer, but he had proven them all wrong. At the start of this new cancer he had been determined to fight it as hard as he had the other one. To hell and back, and then back to hell again.

That’s what it felt like this time around. Bad news, followed by bad news, followed by worse news, followed by the worst possible news. They thought he only had weeks left to live. They made him feel like they wanted him out of their ward as soon as possible. They had no treatments left for him. He was taking up a bed that someone else they could treat could make use of. Get out of here, you don’t deserve to be here as you have failed your treatments. That’s how he felt even though they had been polite enough when they had talked to him. The message in-between the lines was – you don’t belong here, please get out of our sight. You failure. You make us feel sad. Begone. Yesterday.

“Okay already, I am out of here as soon as possible.” He wasn’t 100% sure about hospice but they had sounded welcoming enough. He hoped they would help his family too. “Let’s get outta here!”

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.

Palace of Care – It’s Not Fair

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Awww Dad it’s not fair.

What son?

Nanny.

That Nanny died?

No.

What’s not fair?

The doctors.

The doctors?

The doctors. They spended more time with Nanny than I did.

Spent more time.

She stayed with them for ages at that hospice place. We had to go home every night.

You liked it there, your cousins were there too.

Yeah but they made Nanny tired, she kept on sleeping. She didn’t play with us like she used to.

You guys always had a good time with Nanny, eh?

Yeah, I miss playing with Nanny. Can she come home with us?

Yeah buddy, for a couple of days, so we can say goodbye properly.

Yay, Nanny’s coming to stay.