Category Archives: carers

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 He was more withdrawn and needed to sleep more.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.

Palace of Care – He’ll Be Right Mate

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Photo by Pawel Czerwinski on Unsplash

I didn’t know what to do. He tried the spray and it helped his breathing and panic a bit. Then he needed it again and again. He wanted to call an ambulance and go to the hospital. I didn’t think that would help much. They might’ve taken him to hospital and then eventually back to the hospice.

When he couldn’t catch his breath he freaked out. He started panicking. He was too scared to go to sleep. He was scared he was about to die. I’ve never seen him so scared. I stayed up with him through the night. We’re both pretty tired.

He’s felt safer since coming back to hospice. He’s more comfortable because there’s always people who know what to do. I didn’t know what else to do. I’m not sure if I could handle giving him injections. It was stressful at home.

I just want him to get better. If his breathing was better then he wouldn’t panic. Maybe then he could get to sleep at night instead of during the day. He went outside and felt a bit better in the cold. Having the window open helped.

You can make him better right? If you get the right medications then he will be back to normal again. Then everything will be fine. Just have to get the right medications, then he’ll be right again.

Palace of Care – The Last Dance

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Photo by Jusdevoyage on Unsplash

Thank you for taking him home, that would’ve made him really happy.

As soon as he got home he wanted to go back to hospice. He really likes it here. When he was last here he was dancing with the nurses and singing as well.

How did it go at home?

It was hard. He didn’t know what he wanted. Things kept on changing quickly. We couldn’t cope with him at home. He was very confused at times and demanding and angry.

Unfortunately, the people you are closest to can be treated the most harshly when people are very unwell.

Is he in a coma?

Yes.

But he’s still able to move at times, and he opens his eyes but doesn’t really interact.

Yes, that can happen. He is deeply unconscious but may still be able to move. At other times he might be more wakeful, with lots of ups and downs. This is normal for dying people. He might have only days left to live, but it could be much shorter. No matter how much time is left we will try to make it as comfortable as possible.

Thank you.

Palace of Care – Keeping a Promise

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Photo by Thomas Serer on Unsplash

In our family, our word is our bond. When we say something, we mean it. We promised him we wouldn’t take him back to hospital after his first operation. But we broke the promise because he was too unwell. He had another operation but it didn’t work out, everything fell apart. He was in too much pain. We again promised him not to go back to hospital, but then the blood clot happened. He was in so much pain, and we had to wait so long before the nurses would come to see him. We were all crying, all three of us.

He wants to go home. Even if it is just to die at home. To watch one more football game with his son. That’s all he wanted. To go back to the home that he built for us. We kept asking them to let him go home. Instead, they sent them here to your hospice. This place is nice enough. You people are all nice, but he wants to be at home and spend time with his family.

This morning he’s different. He’s lost all hope. He started saying goodbye to his house. He thinks he’s never going to get back there. He thinks he is going to die here. We had to get out of hospital yesterday. We couldn’t take it any more. We’ve broken our promise to him again, to take him home. I’ve never seen him like this before. What can we do now?

He’s really unwell. I think his bowel is blocked. I think he is dying. He might only have days left to live, but it could be much shorter. We haven’t been able to make him comfortable yet, but time is running out. We have a chance to get him home today. I’d rather he be more comfortable but I’m worried that if we don’t get him home today, he will miss his opportunity. I know how important it is to him and the whole family to get him home. We can make it happen today.

I’m going to stop the blood thinning medication, as it won’t be able to help him any more. I’d much rather he die quickly from a blood clot than die slowly from a bowel obstruction. I know how much he hates vomiting and making a mess. I know you are all still upset about what happened in hospital but I need you to focus on your husband while he is still alive. You can sort out the hospital stuff later. Right now we need to teach you how to give him injections so that you can look after him at home. All right, we need a bit of time to sort out the prescriptions and other stuff. We’re going to make this happen.

Palace of Care – Fathers and Sons 3

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Photo by Vanessa on Unsplash

Generations of his family came together to join the bedside vigil. Grandchildren who were out of town came home to see the beloved ol’ fella. His cheeky smile was still there to greet them all but with each day his energy levels decreased. He needed to sleep more. His appetite dropped off steadily.

They knew time was short. At the start of the admission, over a week ago, they had been told there might only be days left. Dad kept on proving them wrong. He would still rouse to their voices but had become too weak to talk.

The son came in every day and saw his father melting away. Intellectually he was prepared for the loss of a parent. The scenario had played out in his mind ever since the diagnosis was confirmed. The emotional organs always took much longer to catch up with the thoughts.

How much longer could he go on? He had always been strong, but nobody expected him to still be alive. The hospice staff were just as surprised.

“I’m not sure how long he’s got left. If it was anyone else they probably would’ve died last week. I’m not even going to try to guess. He is getting closer, his breathing is changing, and he has become more agitated. It could be hours to days, but that’s what I told you two days ago. He’s going to do things at his own pace, in his own way, just like he always has.”

The son was on the other side of town when the call came through. He raced back in his powerful car as fast as he could, but he was too late. A lifetime of memories washed over him as tears tracked down his cheeks. He had to put his grief on hold as his assigned role in the family took precedence. Someone had to find a funeral director, organize the memorial service and look after everyone else. Again. He took a deep breath in, sighed, and started making phone calls.

Palace of Care – Fathers and Sons 2

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Photo by Ante Hamersmit on Unsplash

It had been almost two months since the treatments had stopped. It was the right thing to do as the treatments could not be given in a safe manner. It was deemed too dangerous to continue, thus they were finished. The blood test results were all highlighted in the abnormal hue of red. The organs had stopped working long ago, the treatment had been trying to replace the organ function. It had worked until other more important organs started to dysfunction. The family was informed of this change, his son knew exactly what this would mean. Time was going to be short, no one could say exactly how short, but he expected his father would die soon.

Almost two months later and Dad was still doing okay. He had continued to live his life the way he wanted to, as always on his own terms. He had worked almost twenty years longer than most people would have. A physical job that exhausted men decades younger than him, but one he had done until less than two years ago. He’d beaten the odds once again. How long could he go on like this? In the past few days, it seemed like life had caught up with Dad. It was subtle to start with, with more fatigue than usual, and a smaller appetite. At times Dad didn’t know where he was, but he could soon be reorientated. Then he almost fell over a few times. It was more of a slow-motion slide to the ground. Gravity had seemed to slow down around him, and he slid joint by joint to the floor. Although he had lost a lot of weight he was too heavy for his partner to lift off the floor. This had started happening more and more times. A call for help was made, and a team came to see him at home.

I was told that apart from the near falls, the nurse couldn’t find anything else needing attention. They thought he might only have weeks left to live. They recommended that he go into residential care as he would be harder to look after as he became more unwell. I had a different opinion. I had seen this play out too many times before. When people start falling it is a sign that the end is drawing closer. I thought further deteriorations were about to occur, that there would soon be a crisis. I arranged an admission into our inpatient unit.

On arrival, he was still pretty good. Able to walk in and converse with our staff. There was no discomfort, he was relaxed and happy. He and his partner settled in quickly. Over the weekend the family arrived and spent time with him. His son was glad that Dad had been admitted, and that the family’s distress had been relieved. The doctors said they’d see what happened over the next few days.

Two days later and Dad needed help to get out of bed. His arms and legs had lost their strength overnight. A further deterioration on top of those that had occurred already. Dad was starting to slip off the edge of the cliff. If he continued to descend at that rate, he might only have days left to live. The son came in again to have an important conversation with him. To find out what he knew about his condition.

“It’s pretty shit. I don’t have much time left.”

“Is there anything you still need to do, to sort out?”

“No. I’d like to see my siblings and our family.”

“Okay Dad, I’ll make some arrangements.”

A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.

A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.