Category Archives: People

Breaking Chain

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This is an edited transcript of a conversation I had with Cheyne McClung, three days ago. The views and feelings expressed are Cheyne’s and he has given me permission to publish his words and photo.

The diagnosis of MND (Motor Neuron Disease). Was a death sentence. It snuck up on me. It took away things. Previously taken for granted. My ability to walk. My ability to work. Can’t hold my baby. Can’t breathe. Need BiPAP. 24/7. Hard to talk.

What did I do. To deserve this? Everyone said, “Nothing.” “It’s bad luck.” I know it’s. Not my fault. But I didn’t expect. Cruel and unusual. Punishment. MND has taken. So much. The worst is. I can’t go home. That’s where I. Want to be.

They ask me. About treatments. What if I get? Infections. What do I want? I want to live. As long as possible. To be with my. Little girl. She needs special care. Birth injury. I’m missing out. On too much. Her smiles. Trying to crawl. Chances to connect. Running out.

They decided. I can’t go home. Need too much care. They decided I need. Care facility. Hope it is. Close to home. They haven’t found one. It’s been weeks. No-one wants me. My case too. Complicated. I know that. People can do BiPAP. Without healthcare training.

They discriminate against me. I’m 37. MND doesn’t care. How old I am. Would they take me? If I was 65? Don’t get it. Care needs the same. Regardless of age. I’m paralysed. Can only move. My neck a bit. No place wants me. Hospices admitted me. For three weeks. Only. Then what? Give me hope. Then take it away. The uncertainty. Is too much. No one wants me. I’m trapped in. Too hard basket. Solitary confinement. In body shell.

Need escape plans. I don’t want to. Die. But if no. Quality of life. Then better off. Dead. I could stop eating. Not treat infections. My lung specialist. Said he could. Make me comfortable. Then stop BiPAP. All over. All done. Gone. Not yet. Only if. No quality of life.

Will anyone listen? Does anyone care? “Please. I just want. To spend time. With my baby girl. Closer to home. Can anyone help me? Please. Don’t make me beg.”

I think therefore I am? – Doing the right thing

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Photo by Malcolm Lightbody on Unsplash

I’ve been time travelling in my own head in recent weeks. Why is it so important to do the right thing for me? This follows a busy month with a number of conference presentations which led to a roller-coaster of emotions. The highs of being with like-minded individuals and being accepted by my new tribe. The lows of being iced by some members of my old tribe. A time to reflect on my experience of being ‘the other’. Children do not choose where they are born or to which family they belong to. They have no choice in the matter. The process of conception is close to miraculous, two tiny collections of DNA are joined together and become an unique recipe for a potential human being. Nine months of incubation later and the accident of birth occurs.

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Palace of Care – Making the most of it

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Photo by Charity Beth Long on Unsplash

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.

Palace of Care – Gotta Work

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Photo by Kyle Hanson on Unsplash

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 – Out of Character

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Photo by Kelly Sikkema on Unsplash

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.

Proceedings of the RRIPM Round Table Workshop

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The Rural and Remote Institute of Palliative Medicine (RRIPM) has released a draft of the proceedings of their Round Table Workshop held last month in Canberra. Participants included consumers and community advocates, clinicians and managers, college and peak body leaders, as well as state and federal government representatives.

Recommendations from the workshop will guide implementation of the next phase of the RRIPM project:

  1. Maintain independence, with clearly defined roles and expectations when working in partnership across participating organisations
  2. Advocate for the establishment of a tri-partite group [RACP, RACGP and ACRRM] to strengthen training alignment
  3. Launch a trial network across training ready locations
  4. Consider proposed actions relating to education and training, leadership and governance, capacity building and relationships for implementation in Year 1 to Year 3
  5. Seek guidance from the Office of the National Rural Health Commissioner, and other jurisdictional representatives to identify future funding sources

To receive regular updates on project progress please register your interest with the project team via email rripmproject@anzspm.org.au

rripm-round-table-workshop-summary-of-proceedings_finalDownload

Palace of Care – An officer and a gentle man

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Photo by Alexander Andrews on Unsplash

The young man looked smart in his military uniform as he strode through the hospice corridors.

He’d come straight over from the defense force base to join the rest of the family, the traffic had seemed slower than ever.

His superior officers had been most understanding, they knew how important it was for him to be there in his family’s time of need.

Grand-Dad had always been there for him, at times he had been more like a Dad.

He would miss Grand-Dad but all the good memories would live on in the stories that the family shared. So many funny stories.

Grand-Dad had helped so many people throughout his life. That’s why the young man had joined the armed forces, to do his bit in helping people.

He gently stroked Grand-Dad’s face as he spoke to him, as tears brimmed in his eyes.

A mixture of emotions roiled on his face. Sad that Grand-Dad had died, but relieved that he didn’t have to suffer any more.

I love you Grand-Dad. Thank you for everything. Don’t you worry, we’ll look after Grand-Ma and each other.

30 dying people explain what really matters

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It’s unusual to read an article like this in the media. https://www.theguardian.com/society/2024/jan/27/advice-from-30-people-who-really-started-living-when-they-found-out-they-were-dying

I wonder how I would react to the diagnosis of a life-limiting illness?

Palace of Care – What She Said at Lunch

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Photo by Hello I’m Nik on Unsplash

Life over the past two years had become chaotic and uncertain, but she was certain that the gathered guests were there for a good cause. She thanked the crowd for spending their time at the hospice fundraising lunch. In New Zealand there are over 27000 registered charities and on this day hundreds of people had chosen to be there to raise money for the hospice. She thanked the sponsors and donors for their generous gifts and support. She told them that hospice couldn’t do what they do without their help.

She didn’t know what hospice was about until three years after her mother’s death. She cradled her mother in her arms as she became heavier and heavier, and as she took her last breaths. Although she was flooded with deep sadness, relief was the dominant feeling. Relief from her mother not suffering any longer. The night before her mother died she decided to chase her dream to become an Olympian. On arrival at the hospice they could feel the care and love surrounding them. When her mother was transferred to the hospice she was able to sleep in a La-Z-Boy instead of the hard-tiled floor of the hospital.

Yesterday morning she thought she would not survive long enough to speak at the hospice fundraising event this afternoon. She had to bring her oxygen bottle to be able to attend. She shared with the audience her own experiences of hospice, and how they had helped her make life more bearable. She talked about the friends she had made at the hospice’s living well centre. There was one friend in particular who she missed the most. The final contact they had with each other was when her friend was in the hospital. The hospice group of friends had sent their friend best wishes via a group photo, which was much appreciated. Unfortunately, their friend died the next day. A reminder of how precarious life is when you are dying.

Palace of Care – Sat Sri Akal

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Photo by Sandy Millar on Unsplash

I prepared to see our patient and their spouse. They had been doing well until the past week. Then the weakness and fatigue worsened. They didn’t have the strength to leave the bed. Their spouse looked after them well. Their children were parents too. They were proud of their grandchildren. A close family but COVID-enforced separation had meant they had only seen one of their children once in two years. The same two years that cancer had taken over.

The spouse was worried about sedation from medications. The patient was reported to be in a lot of pain and could use more medication. Breathing was laboured. The patient had not spoken clearly in the 48 hours preceding the admission. As soon as I entered the room I noted the distress on the patient’s face, mirrored by the look of concern worn by their spouse. I needed to establish rapport quickly, as the suffering needed to be attended to urgently. I recognised the traditional turban and greeted them with, “Sat Sri Akal.” A look of surprised appreciation crossed over the spouse’s face. The patient stared blankly at the ceiling in a confused manner.

“They’ve been uncomfortable overnight with pain. I need to do something about it. I’m worried that it isn’t safe to swallow anymore. This is what happens at the end of life when someone is dying.”

“Can I feed them, they haven’t eaten since yesterday.”

“When someone is very unwell they can’t handle the food. They can’t swallow safely and it might end up in the lungs. It might cause vomiting or diarrhoea. I don’t want to make the situation worse or increase the suffering. We need to give medications by injections, under the skin.”

“Subcutaneous?”

“Yes, that’s right. It will be the safest way to give medications, to make sure they go where they are needed.”

“Okay, how much time do we have left?”

“I’m sorry, your spouse is so unwell, they might only have hours to days left to live. They could die at any time. I’m sorry.”

“No, no need to be sorry. It is part of life, it is something that we have to face at some stage.”

“We will do our best to make them comfortable, no matter how much time is left, we will keep on trying. We want to calm down the pain, calm down the breathing, calm down nausea and distress”

“Thank you, doctor.”

“How long have you been together?”

“44 years.”

“I’m going to change the medications now. Please let us know if you or your spouse need anything. Take care.”