I think therefore I am? – On Adaptation

Photo by Yuriy Chemerys on Unsplash

Humans can adapt to many different situations. It may take a few days to acclimate to the weather at your trip’s destination, but you get used to the new situation. Physiological adaptation occurs with the senses. If you hear a repeated sound your brain will adapt to it and will start to filter it out. You will start to notice it less and that allows you to notice other sounds. The same occurs when you encounter pungent aromas, after a short period of time the smell will be less noticeable. Something similar occurs when you expose yourself to differences in temperature, e.g. sauna or ice bath.

This adaptation process will work to a certain extent and depends on your body’s coping ability. If your body is compromised in any way then your ability to adapt will be affected. Serious illnesses can lead to an inability to handle these situations. There is a limit to what you can cope with. This might be changed with training. Repeated exposure to the stimulus will lead to changes in the body and mind.

Adaptation and coping are not purely physical and the mind has a big part to play. I have looked after many people who have survived for much longer than I thought would be possible. I have often remarked that they are kept alive by sheer force of willpower. A strong mind will sustain a physical body much longer than expected. People with strong beliefs or reasons to stay alive may also outlive their prognoses.

This inner strength lies somewhere deep inside the individual and their determination may have resulted in many successes in the past. These people might be described as stubborn, and like most personality traits people will stay true to themselves right until the end. Sometimes people have to actively let go before they can finish their current life. One person said, “There’s too much love around me, I can’t leave when there is so much love.” That’s why some people will wait until there is no one around before they can die. They didn’t want anyone to witness their very end.

We all make choices. Survival is not mandatory. It is an active choice that many of us make. Adapt or die. It’s not that simple. Even coping with a change in time zone can be a challenge as I am finding out today. Yawn.

Palace of Care – Q+A

Photo by Ilja Nedilko on Unsplash

The reason your legs and tummy are swollen is because of your illness. When you are really unwell the body is under great strain and isn’t able to produce the protein that your body needs. Amongst other roles protein keeps water in your blood supply. When you don’t have enough protein in your blood the water will leak out into your tissues. That’s why your legs and abdomen are so swollen. This is not the kind of swelling which will respond to medications that make you lose water. They would make you lose water from your blood supply leading to dehydration but the fluid in your legs and abdomen would not decrease. Massage can help shift the excess fluid if the problem was blocked lymph glands, but it is unlikely to help the kind of swellings that you have. That being said it can be soothing and can make you more comfortable so I would encourage you to have gentle massages.

We try to be flexible when it comes to visiting hours here. We know that your energy levels are low and that you feel like you need to be at your best whenever your visitors are around. This can be exhausting. I would recommend that unless it is the people closest to you visiting that other visits be limited to ten minutes. You can blame this on me, “that nasty doctor has limited visiting times.” Your energy is a precious and scarce resource. We’re keen to help you save your energy for whatever you feel like doing. Please let us help you. We’re keen to try to make life easier for you if possible.

Palace of Care – Surprise!

Photo by Tyler Nix on Unsplash

“Where is your pain?”

He grimaced as he pointed towards the left side of his neck.

“How would you score it out of 10, with zero being no pain and 10 the worst you’ve ever felt?”

Jaw clenched tightly he opened his gritted teeth to tell me, “7 out of 10.”

It looked more like 17.

The pillow seemed to swallow up his head. Loose skin covered his arms and torso, signs of significant weight loss.

“I’m not sure if I’ll make it.”

He was scheduled to be heading home at the end of the month, but I was unsure if he’d still be alive at the end of the week. “I don’t know either, but we’ll take it one day at a time.”

Over the next three days, he worsened each day, heading back home was not going to be an option. The family would have to bring home to him instead. They made urgent plans to travel to visit him. The clock was ticking away his life. Would they make it in time?

Yes.

Their arrival had a surprising effect.

His face brightened when they came to see him. He became more alert and he was able to recognise each of his family members.

The next day he was able to eat more food.

Two days later he walked to the bathroom without assistance.

Five days later he wanted to go to the home of one of his local children.

His family’s arrival from afar had improved his condition in ways that medications could not.

The power of love had provided him and his family with bonus time. It might not last long but they would make the most of it at home together.

He died twenty days later surrounded by his family.

Palace of Care – At Any Time

Photo by Kunj Parekh on Unsplash

“Good morning, I’m the specialist here. What’s your name? This is your daughter. How old is she?”

“She’s eight.”

“You’ve all had a rough night.”

“Yeah, every time they turn him he has bad pain.”

“There’s been a lot of changes over a short time.”

“Things have been happening too fast over the last weeks.”

“We need to make some changes to make him more comfortable. It would be better for him to have a catheter, then he won’t get wet and we won’t need to change his pads so often.”

“Okay, let’s do it. His breathing has changed, is it a sign that things are getting worse?”

“Yes, everything is getting worse. His body is so unwell that it can’t control his breathing anymore. His breathing gets quicker, then it slows down, and then there are gaps. As he becomes more unwell the gaps become longer and longer. His hands and feet will start to feel cold as his circulation worsens.”

“How much time do you think is left? Should I call the rest of the family in? They visited last night.”

“It might just be hours to short days left, but he could have much less time if the changes continue happening faster. He could go at any time. It’s a good idea to call the rest of the family in.”

“We’re going to change the medications to control the pain better. Since I’m already gowned up I’ll put in the catheter now. I’ll ask my team to bring the equipment in.”

“Okay, I’m going to step out to make some phone calls.”

“Hey man, I’m going to pop in a catheter to catch your urine, it’ll keep you nice and dry. Then we won’t have to change you as much which won’t be as painful. We’ll keep a close eye on your wife and daughter. Your daughter painted something nice for you, looks like a fairy with a magic wand with a star on it, in purple. The words say I love you Dad.”

“I’m just going to check the pulse on your neck. Hmm, I can’t find it. I’m going to listen to your heart and lungs now. I need to shine a light in your eye. Same on the other side.”

“What’s happened?”

“I’m very sorry for your loss.”

“Mummy, why isn’t Daddy breathing?”

“I’m sorry your Dad has died. He was trying his best to hold on for you, but the illness has been too much for him to handle. Now he doesn’t have any pain and he is heading up to heaven. He’ll still be keeping an eye on you and will be able to hear what you say to him.”

Tears were sniffed back around the room.

Palace of Care – Five Sides of a Story

Photo by Clem Onojeghuo on Unsplash

The breathing pattern only started changing half an hour ago.

His breathing became faster, then it slowed right down, just like what you told us would happen yesterday.

He only start having gaps half an hour ago.

His hands were cold before, but they’ve warmed up again.

Is this what happens as people approach the end?

That’s what is happening right?

Yeah, I thought so.

Everything shuts down.

His feet have been fine since they changed the bed to the extended version.

He’s always liked having the sheets tucked over his feet.

Makes him feel cosier.


Yeah Dad, your eldest is just over there on the phone sorting stuff out.

Looking after everyone around her.

Being in charge is her natural state.

She got all that from you Dad.

You can hear her on the phone.

She’s always on the phone.

Sorting people out.

That’s what she’s good at, just like you, looking after everyone.


I thought he was going to die last night. I could tell he was warming up.

That’s what happened with my Mum.

I thought, this is it, he’s about to die.

A good father to our children and the best grandfather for their children.

Last night I kissed him for the first time in decades. You know we’d been apart from each other for many years.

I really thought he was going to die last night.

I think he’s hanging on for another kiss and maybe even a cuddle. Who knows he might just get one.


Dad, it’s me.

I’m on my way in, but you don’t have to wait for me.

You just do what you need to Dad.

It’s okay, you just do what you need to. I’ll be okay.

I love you Dad

Hey it’s me again.


I’ve just got to check a few things.

Just having a listen to your heart and lungs.

Feeling for your pulse.

I need to open your eye and shine this light in.

And the same on the other side.

Okay, that’s all done, I’ll just tuck you in again.

Rest in peace.

Safe journey.

Everyone, I’m very sorry for your loss.

Palace of Care – Whoa Part 2

Photo by Jr Korpa on Unsplash

I was surprised that a benzodiazepine subcutaneous infusion had not been started. Despite three anti-seizure medications being used, the seizures continued.

I was surprised to receive the referral for a hospice inpatient admission as I thought the patient would’ve died a week ago.

My team was surprised that the patient could be easily roused. He had been talking to his wife and had been eating small amounts of food.

The admitting doctor was surprised when the patient said, “I see another man in the room.”

“Is it someone you know?”

“Yes, it’s Robert.”

The doctor had to pick his jaw off the floor.

Someone named Robert had died in the same room, on the same bed, only days ago.

We were even more surprised when the patient’s wife said that the late Robert had been her husband’s good friend. They had worked together for many years and had spent a lot of time with each other. When we heard this chills ran down our spines.

The idea that Robert had visited brought comfort to the patient and his wife.

Our patient joined his friend Robert on the other side only days later.

Palace of Care – Whoa Part 1

Photo by Clinton Naik on Unsplash

It was a day like any other. He woke up and was helped by the staff out of bed. Breakfast was served, it was the usual porridge, toast and jam. Finished off with a nice cup of tea. The next part of the routine involved having a shower which would take half an hour. Nothing out of the normal at all. His wife would be coming to visit for morning tea, they would read the paper together. See what was going on in the world. The same routine they had followed over many months.

Everything changed when his hand started twitching. You had to really look to notice it, and it would be gone within seconds. When this happened his face looked as if all expression had been wiped away by a whiteboard eraser. Blank. More of these episodes occurred but only some were noticed by the busy care home staff. One registered nurse supervising the care of 20 to 40 patients was the norm for the industry. In recent months it was up to 60 patients, and the staff had trouble attending to their residents’ routine care, let alone anything out of the ordinary.

The care assistant noticed the patient’s body stiffening, his right arm clenched too tight to not be painful, a pained expression on his otherwise blank face. He did not respond to voice. The arm clenching lasted for a minute and was followed by violent shaking of his right arm and leg. The bedsheets became wet. The jerks lasted for two minutes at which point the patient awoke. He was disorientated and had no memory of what had happened. The on-call doctor had been called to review the patient, but would not be available until the afternoon. Whilst awaiting the doctor’s visit two further seizures were witnessed and the patient was sent to the hospital.

What followed were long weeks of assessments by many different specialist doctors. Many scans and invasive procedures looked for a cause for the seizures. Treatments were started to try to control the seizures. One medication was started, then another, and another but the seizures persisted, as the patient’s consciousness levels desisted. The local experts were called in and gave their opinions. The brain scans revealed worsening of a ‘benign’ brain tumour – benign meaning not spreading but as we saw in this case, not a benign outcome. Despite all efforts, the seizures and worsening consciousness levels worsened.

Serious conversations about end-of-life were held and it was decided to keep him comfortable as none of the treatments had worked. They had tube-fed him but he kept pulling out the uncomfortable tube which went through his nostril into his stomach. Palliative care advice was sought and an infusion was started to replace medications that could no longer be given to him including the three anti-seizure medications in combination.

Finally, an infusion was started and controlled the seizures. The hospital teams expected the patient would die soon. Everyone was surprised when he woke up and talked for the first time in weeks.

Palace of Care – I’m in charge now

Photo by Marten Bjork on Unsplash

She had become sleepier over the course of the week. She would still rouse to voice at times. Her eyes would open for a few seconds and then close again. A few days ago she was still talking but her voice became weaker as the days passed. It was becoming harder to understand her and then she stopped talking.

She had been unresponsive two days ago and would only make occasional sounds when being washed or turned in bed. This is what happens as a person dies, they become less able to communicate. She had gone into a coma.

We encourage people to say what they need to their unconscious loved ones.

“They can hear you and understand you. They will try and respond but may not be able to do so anymore. Tell them what you need to.”

The nurse was talking to the husband about who the patient had wanted around.

“She wanted her friend to come and visit.”

“I think she is too unwell now, I don’t think she should come over.”

“But she specifically had asked for her to come.”

“Doesn’t matter. I’m in charge now.”

Immediately from the bed came two sharp coughs.

A phone call was then made and the friend visited later in the morning.

Palace of Care – View from Four Feet

Photo by Nico Smit on Unsplash

The little boy looked sad. He didn’t say much. Did he actually know what was going on? He had visited hospice many times over the last months. His father would bring the children in after school. It was important to his mother that the children stick to their routines as much as possible. Education was one of the most highly valued things in life for this family.

The staff would print out colouring pages for him to work on. Superheroes were his favourite. He had coloured in Spider-Man pages over the last few visits and the pictures had been stuck to his mother’s room’s wall.

Today he wanted to colour in a picture using his mother’s favourite colour – Yellow. He asked the nurses if they could give him a “Golden Iron Man picture.” The nurses grabbed the activity trolley with art supplies and children’s games. There were some colouring pages but no Iron Man was present.

He went in to see his mother. She looked tired and kept on falling asleep. He knew she was unwell. She had been staying at the hospice for weeks. She used to come home to spend time with the family, but she had not been home for over a week. He missed his mother and the games she would play with them. They were supposed to go for an overseas trip but that had been cancelled. Mum could no longer leave the bed. She was always in pyjamas these days. She used to take them shopping with her. Fun times. It was all so different now.

Their home was different, without mum at home. When would she be coming home? He really missed her. Had he done something to make her not want to come home?

Palace of Care – Fade to Yellow

Photo by Tristan Gassert on Unsplash

In the last days of her life, she was visited by close friends and family members. She conversed with them and still shared her sense of humour with them. To some of her oldest friends, she said her final goodbyes.

One of her best friends asked me if it would be okay for her to have some champagne. I said I would allow it but she wasn’t allowed to drink alone. He went off to buy some. It had to be Tattinger Champagne, nothing else would do. I said she could eat whatever she felt like. A question was asked about cigarettes and again I had no objections. She was dying and she could do whatever she liked that would bring her some pleasure and normality.

“How can you tell that time is short?”

“She’s been deteriorating every day. She has become unclear in her thinking and is needing to sleep more. These are all signs that death is coming soon.”

“How long do you think she has got left?”

“A few days ago we thought she might only have days to weeks left to live. Now I think she only has hours to days left. She could die at any time.”

“Who do you think can come and visit her.”

“I’d recommend only immediate family only and her closest friends. Whomever she wants to see.”

“Will you let our brother know?”

“Sure, we’ll make contact with him.”

The next day four members of the hospice clinical team painted their nails yellow and orange to match their patient’s fingernails. When she woke up she was shown the photos and she was able to enjoy the yellow-clad doctor’s finger and toenails which were all highlighted in bright yellow. The nails gave her and the family something to smile and laugh about in between the tears.

The next morning the Polish team, who were not from Poland, were about to go into the room when the nurse came out to ask the family to come in urgently.

“She’s about to take her last breath.”

The clinicians made way for the family.

She died with the voices of her family telling her how much they loved her.