I think therefore I am? – Mother’s Day

Photo by guille pozzi on Unsplash

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 – Special Request

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Things keep on changing every day.

Nod.

Do you know what is going on?

Yes, she is getting worse.

Yes, the cancer is getting to be too much for her. It’s made her fall asleep.

Yes, the other doctor told us yesterday.

Do you guys usually go to church?

Yes doctor, but she hasn’t been for a long time because she’s been so sick.

Would you like a priest to come over.?

Yes, doctor, we have arranged for our pastor to come over.

Will he come with church members?

Yes. Doctor, can we please have a bigger room?

I’ll see what we can do. I’ll have to talk to some of my colleagues. I’ll do what I can.

Okay.

The things that have been making her uncomfortable are going to get worse. Her breathing is going to change. She’s going to get more sleepy. She doesn’t have much time left, she is dying.

Yes, Doctor, can we please have a bigger room? We are a big family and there are a lot of us who want to come in. Do you think you can help us doctor, please.

I will get onto it right away. In the meantime I’m going to review all of her medications. We want her as comfortable as possible. She’s had too much pain causing suffering.

Thank you Doctor.

You all take care.

It took a bit of negotiation and flexibility but the patient and family were moved into one of our bigger rooms. This allowed three generations of the family to spend the afternoon together with our patient. She died short hours later in the presence of her family.

Palace of Care – Three Wishes

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They had told him time was short. He had asked them how long they meant. He couldn’t recall them giving him a clear answer. He set himself three goals before leaving hospital. Grass underfoot, the taste of green apple and to eat an ice-block.

The ice-block would be easy, we had plenty of ice-blocks as our patients may have swallowing difficulties and icy treats can be most welcome. Plain old lemonade ice-blocks can be most refreshing.

I asked if our kitchen had green apples. No – this was not something that patients usually ate. Too hard to chew for some people and too sour for most people. The kitchen usually was stocked with canned fruit, stuff that would not perish. I asked the universe for green apples, the universe provided me with five of the best. (A quick trip to the local convenience store was made. Sorry, we just sold our last green apples to another customer. A longer trip to a local fruit and vegetable store was successful. Five bright green Granny Smith apples were chosen. 10 minutes spent travelling in a hospice EV. )

I dropped off four apples to our kitchen staff.

“Could you make an icy treat with these apples?”

“Sure, I’ll blend them with ice.”

I went off to be the teacher’s pet. Giving our patient the fifth apple I left the room as he was busy with another staff member. I walked down the corridor and the chef was holding a glass jar that contained bright green icy slush. I hadn’t expected this to be prepared so quickly. I presented our patient with the drink. As he sucked on the straw the look on his face was pure pleasure, “Ahh, that’s good.” He hadn’t been allowed to eat and drink for a long time in hospital.

Grass underfoot was going to be a bit more challenging. His mobility had worsened as he had become weaker. Stuck in bed for weeks. Stuck inside the hospital walls, breathing conditioned air. His only sunlight exposure was through a window that could not be opened. The first day he was too tired to do anything. Could he be hoisted into a wheelchair? Would we have to push his bed out into our courtyard, over to the lawn? Could he sit up in bed? Or could we bring a piece of turf into his room? Maybe a combination of all three wishes, an icy green apple and grass slushy? Maybe not. Thanks to the kind efforts of our physiotherapist (not terrorist) and our nursing staff a short trip in a wheelchair was enabled.

Out into the sunlight, a gentle breeze on his face wheeled out towards a fine collection of chlorophyll. Slippers off. Feet resting on lawny goodness. A man communing with nature. He lay back in a reclined position, his head propped up by a soft pillow. A satisfied smile in his eyes and mouth. Contented bliss. A momentary escape from hell. A relaxing dose of normality. A simple pleasure.

Missions Accomplished team!

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.

Palace of Care – My favourite question

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How did you meet each other?

My friend was going out with a girl who worked at a  shoe shop. One day he asked me to meet him at the shoe shop. I waited outside for him and then the other girl who worked at the shop was sent out. She had been told that there was someone outside who wanted to meet her. That’s how we met and we’ve been together ever since. We became soulmates.

That’s cool. You met her when she was working at a shoe store and you became sole-mates.

Palace of Care – What do you think is going on?

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The hospital doctors said I was very unwell, and that they didn’t have any treatments left for me. They said I might not have much time left.

Did they say how much time you had left?

Two months, maybe a year.

What do you think?

Nah.

You think you have more time?

Yeah. I’m trying the other medicine from the islands. I’ll see if it helps.

Which one is that, the white stuff?

No, the other bottle.

Oh that one. $40 a bottle. How long have you been taking it?

About a month.

What’s it taste like?

Sour. Yuck very sour.

Not as good as the Ribena?

No, I take Ribena afterwards to get rid of the taste of the medicine.

What is it? Is it from your island?

I don’t know, it’s from my partner’s island.

How long have you been together?

18 years.

Where did you meet?

Over here.

How’s your pain?

Okay.

How would you score it out of ten? Zero being no pain, ten being the worst you’ve ever felt.

It’s not bad just a 7. When it is real bad it can go up to 10.

Does the pain medicine help?

Yeah, I think so.

How low does it bring the pain down?

To about 5 or 6.

Does it ever go down further?

No.

How about when you were in hospital, they tried some different medications for you. Did they help?

Nah, it didn’t make any difference.

Okay, we’ll need to try something different as your muscles are twitching.

Why is that?

It’s a side effect and it’s telling us you have come up to your maximum dose with that medication. We need to switch it to something else. I’m hoping it will help your pain more with less twitching.

Palace of Care – Out of Character

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He’s been telling me off, he’s never done that to me before in all of our time together. He was grumpy and demanding. He wanted to get up and wanted me to lift him up. I can’t do that I’d hurt my back, he’s too heavy. I’m worried he’s going to fall over. He just won’t listen to reason.

Yes, I’ve noticed a big change. He was joking with us just the other day, now I can’t connect with him at all. I want you to know that he is talking strangely and it is out of his control. I don’t want you to take what he says to heart. It’s the illness talking not him.

Is it the medication change from yesterday?

I don’t think so. I think it probably is his cancer getting worse and making his liver fail. We’ll change his medication to see if it will make a difference, but it might not improve his condition.

A doctor friend told us that when people get closer to dying they become confused. Is that what is happening?

Yes, your friend is correct, that is something we see in our patients as they get closer to dying.

How long do you think he has left? Weeks?

I think he might at most have weeks. With the changes we’ve seen so far I would guess he only had days to weeks left to live. Things can change much faster as we approach the finishing line. He might have much less time than weeks left.

Our older son is taking me to the funeral director to make arrangements. My younger son is coming over but I’m not sure if he can handle looking after Dad. I’ve asked a nurse friend to come over to support my son.

That’s a good idea. I’m going to change your husband’s medications now, to see if we can get him thinking more clearly. His thinking may or may not clear up, no matter what happens.