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Resources for First Nations Health Authority HCAs/HCWs

These webinar recordings are for HCAs/HCWs working to provide palliative care, produced by Life and Death Matters in collaboration with First Nations Health Authority.

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Caring for a Person with Delirium

 

This webinar will help people providing palliative care  to recognize the signs that a person is experiencing delirium. To gather information about the person’s delirium, record and report to the team and to provide comfort measures for the person and family.

 

| Transcript |

 

(unedited)

Okay. So I can start now soup. Okay. [inaudible] I welcome each and every one of you to then set stroke, traditional lines of the Squamish nation sleigh with tooth and must plan for those of you her’s zooming or lower mainland devices, and also acknowledge, respect, and honor the ancestral traditional lens where you live, work and play, and also of your nations. So I know some people don’t live in their nation land. So I do acknowledge your first nation lens where you are from and where you live, work, and play. I’d like this to thank you all for coming together to be completing this integrating a palliative approach because you’re getting to the finish of your course. And that is so awesome. My hands are up to you and gratitude, thanking you for taking the time and doing all of this with cath and Elizabeth and suit. I’m going to ask us to come together with one heart. One mind, ask you to open your hands. And as I always share, we receive energy from food or see the top of our head into our inner energy and that we send each other and we need to have our arms crossed and our hands on cross and be able to be opened, to receive energy from each

Speaker 2 (00:02:05):

Other, incentive to each other, take a few breaths to ground yourself and get focused. And now I’m going to say, Chen, [inaudible] the seats asking you to create or to watch over and protect each and every one of your children gathered here today and help them with their squall. When their feelings in their hearts and minds, their emotional, mental, physical, and spiritual wellbeing and health asking you create, or to help each of your children to use their, use the snake, speak the words and listen to the words respectfully take in their hearts. What’s meant for them set aside what they don’t need today to bring back another day and be able to transfer knowledge, information, experiences, and ask questions, to be able to move forward in a good way together, asking you create or deliver today. Be a yet one hall dates off and excellent work to date, and that everyone comes together with one heart and one mind to chin slight stand and work together to hold each other up and support one another and help each other in the good work that’s going to be done in our first nation communities select today, be on hall, say it’s off the next limp work, creative Tomac.

Speaker 2 (00:03:38):

Let’s see snake, Chimp. Those are my words. Thank you all for allowing me to start our day in a good way. And I’m going to shut off my camera and mute myself, but be listening and I’m doing great. I’m doing fine. I’m keeping busy and I’m getting even more busy. So I’m going to be looking forward to the weekend. No, take care and I’ll. Thank you.

Speaker 1 (00:04:07):

Awesome. Thank you so much. The quality. I really appreciate you starting our meeting off with fair. So I’m Steve Bart, Nick, and I’m a practice consultant here with first nations health facility. And I’m calling in from the traditional and unseated territory of the Coquitlam first nations people. And I’m so grateful to be here by, to take a moment to acknowledge the land that you’re calling from. You’re more than welcome to put that into the chat if you’d like cath and Elizabeth are here today to, to share information around delirium, really happy to have them here to share this in this session with us as you know, the session is recorded and you’re welcome to keep your camera on or off. It’s up to you. We will record in speaker view. So unless you’re speaking, won’t be visible if you’d like to ask a question on mute welcome to do that.

Speaker 1 (00:05:01):

Or if you want to do it anonymously, you can just send a chat privately side of myself, a cap, and we’ll make sure that your question is asked because your questions will help future people who viewed this recording. And if you’re viewing the recording welcome, we’re happy to have you here with us. We’d like to re create a safe space for learning. So ask for confidentiality. So if it’s not your story, please don’t share it without permission. We’re looking for equal air time. It wasn’t asked that you suspend judgment and come with an open mind. We’re going to try to be timely and finish up by two 30. And and we invite you to engage as much as possible. I know you have a right to pass, right? I’m not note I’m going to have things over Marie.

Speaker 3 (00:05:50):

Thank you. So I’ll just introduce myself and Elizabeth, and then we’re just going to take, pause the recording so that if you want to, that you have the opportunity to introduce yourself and we can just have a chat before we start. So my name’s Katherine Marie, I think I have met most of you and excited to hear from you today and to share some stories and some thoughts as we wrestle with the topic of delirium and what that means and your role, how you can best identify and report and ideas for comforting, both for preventing comforting person and responding and supporting the family too. So I’m a hospice palliative care nurse and the author of the texts that you’ve got, which is titled integrating a palliative approach essentially for personal support workers. And I’m so grateful to have together to be together again today with Elizabeth Costin, who is a palliative care a counselor, social worker and and presenter, and has we have been colleagues for a long time.

Speaker 3 (00:07:02):

We have joked, I think when that was 20 years of teaching, we would joke that we were going for marriage counseling and we must have made it through because we’re still together now. And that was probably another five years down the road. So I’m Elizabeth any, oh, and I would like to acknowledge both of us live and play on the traditional ancestral lands of the coast, Salish people I’m out in the area where the Sonic people lived and just south of the sail community, east of SART leapt, just across the peninsula and south of Pacojet and say, come and so grateful for those people in our lives. Alyssa, if anything, you’d like to add just by way of introduction.

Speaker 4 (00:07:43):

No, that sounds great. I’m just, I’m delighted to have the opportunity to share this complex topic and to discuss it.

Speaker 3 (00:07:55):

Thank you about today. We’re going to talk specifically about delirium and I think this can be one of the most painful things for us to experience in for many years, hospice and palliative care focused on people with cancer. And so for us, when people became developed a delirium and became confused and weren’t able to speak for themselves for us, this was a really big deal. This was a a game changer. It was, it was all of a sudden we were having to ask the family to speak on behalf. And the question we would often ask is not, what do you think we should do, but what do you think that your, a person would have wanted us to do? So on the other hand, as we have now moved more and more into caring for people with any life limiting illness, including those associated with any dementia.

Speaker 3 (00:08:53):

One of the things that we’ve realized is that, that the people working in geriatric care and in dementia care, they are so experienced at not having the person there to speak for themselves. And often we’re the ones having to learn from that body of knowledge. So today we’re going to talk about why delirium is so common in people with it that are dying and some of the effects of delirium and talk about gathering information. So you won’t need to pro diagnose delirium, but you will be able to gather information. And again, just like we talked about last week for last month, how important it is that you gather information and report that to the team. And I keep saying that the further away the person is from the nurse, the better your report has to be. We’ll talk about providing support and comfort to the person when the delirium begins during and afterwards.

Speaker 3 (00:09:55):

And then we’ll talk about the difference between delirium and dementia and also delirium with final guests. So when I was trying to write something once about delirium and I really, really struggled to write and I had been, I had been working in working with a colleague and I finally said, I know what I will do. I will write about delirium from the perspective of the brain. So I’m going to read to you the reading that I, the, the writing that I did that day. So I’m writing as though I am the brain speaking, and this is in your book on page 1 0 8. So this book here which you have, hopefully all of you have in your office or in your clinic. So in order for me, the brain to work the rest of my body parts and organs have to work.

Speaker 3 (00:10:50):

If they don’t do their job, then I can’t do mine. When my body doesn’t work well, then I get confused. I can’t find the right words. I can’t pay attention. I I can’t make clear decisions. I can’t remember things or sort out what was passed, what is present and what is future? Sometimes I hallucinate and, and often I misunderstand and worst of all, no one seems to understand me. Sometimes I am sleepy when I’m supposed to be awake. And other times I’m awake when everyone else is trying to sleep. Sometimes I get agitated and upset. And other times I am just sleeping and wonder what the fuss is all around me. Sometimes I think, see things that no one else sees. And sometimes the things I see make sense, like the time I missed up the nurse for my daughter or the time that I thought the bells were, the fire alarm, when my house burned down.

Speaker 3 (00:11:49):

But other times the images that I see are scary. And I scared. I understand that what I experienced is called delirium. When I am delirious, I can’t always answer questions about it, but then a little while later, I might be clear enough to tell you my memories. In fact, we might even be able to find themes and reasons for the delirium. When I asked the nurse why delirium occurs, I am told a whole list of things, but one thing that no one mentions is dying, did you know that most of the causes of delirium occurred naturally in the dying process. And addition to the things within my body that causes delirium medications are a really common cause of it and my body. And I, well, we often need some of these medications that cause delirium in order to manage common symptoms of dying. So as I see it dying itself causes delirium.

Speaker 3 (00:12:44):

So let me tell you why my body and I, we are connected. My body is sick right now. And as the disease progresses through my body, my desire for food, my ability to swallow and digest food, decreases my organs, including my kidneys, my liver and my heart are not functioning well. My metabolism is changing. I am low on water and low on oxygen. And my electrolytes are often out of balance. The toxins are building up. My immune system is weak and I get more infections, urinary tract infections, and pneumonia seem to be my constant companions in order to do their job. Well, the antibiotics need a healthy immune system. So in my body they can’t do their job. Well, I expect that at some point, the antibiotics will stop working altogether. Oh. And my bladder and bowels aren’t working well. And with the side effects of medications, the bowels get constipated. And let me tell you when the bowel is constipated, I can’t see straight. So the long and short of it is you can look at the list of all the different things that cause delirium, but dying well dying is the perfect storm for delirium.

Speaker 3 (00:14:00):

So from, from my perspective, because I like things that are kind of simple. I really like that little writing. Any comments from anybody Elizabeth, you’re smiling. You like it? Oh yeah, no. I thought that that was a wonderful way to approach it from the inside out. I like that. So if we now look at the word delirium, and if we take the letters for delirium, D E L I M and Marley wrote and said, I love that. Thank you. So D for the causes of delirium D stands for drugs, drugs, drugs, and more drugs D also sends for dehydration and for depression. So, so we think about how many times we’re using medications for people to control symptoms. And yes, they can cause delirium, electrolyte imbalance, E for E for electrolyte imbalance, endocrine disorders, alcohol, or drug abuse, or withdrawal Ellis for liver failure, I is for infection are, is for respiratory problems, which would cause low oxygen are, is also for retention like urinary retention or constipation.

Speaker 3 (00:15:26):

I is for increased intercranial pressure. You is for uremia urinary issues, renal failure and undertreated pain. So you for undertreated pain and M for metabolic disease, metastasis to the brain and medication and malnutrition. So I just want to talk about undertreated pain. What I was asked years ago to do something specifically about dying with dementia. And I thought, oh, I don’t want to do something and have people from gerontology and geriatric specialists telling me that we can’t treat pain and, and blah, blah, blah. I was really worried that we would be at a posing and not, not coming together. And in fact, as soon as I started doing the research gerontology and hospice, palliative care principles fit beautifully together. And the sad thing was that the research wasn’t even new. And one of the things that was most important was showing that pain itself causes delirium, untreated pain can cause delirium.

Speaker 3 (00:16:33):

So you have somebody with dementia, maybe who doesn’t even understand that what they’re feeling is pain and they can develop a delirium. So, so historically, sometimes people were afraid to give people medications for pain management, say for example, in case it caused them a delirium, especially if they had dementia, but now we’re learning also the importance of controlling pain. So so delirium then to define it is a physical state where the praying cannot send or receive information correctly. So this is somebody whose brain might be functioning, just fine, or appears to be just fine at two o’clock and all in the afternoon. And all of a sudden at two 30, they are not now just need to make a really important comment when it comes to working with people who have experienced trauma any time when you’ve got someone who’s nearing death and maybe the barriers are down the things that they have been able to hold at bay and hold and put up defenses for years, maybe. And for years, they’ve been able to suppress memories. All of a sudden with all of those things that we talked about with delirium, those barriers can be down and those old things might come right to the front. So memories of trauma belief that trauma’s happening right now, as we speak that mixing up a past and present can be really difficult. Elizabeth had a story years ago. Elizabeth, would you like to just share that story about the fellow from Europe?

Speaker 4 (00:18:29):

Oh yes, because the trauma can be from abuse and violence as people that experienced in the residential school system. We also saw that with veterans of war and this particular man had been a veteran of a very terrible war in the mid east and had seen things and been forced to do things that were too painful to discuss. So he suppressed those memories until he could no longer do that because of the medication and what surfaced as he was dying was he was as part of his experience was forced to go on a death March. And he started to sing the song that he saying and that the people on this March saying and it was the family that were able to identify that this was not random kind of singing. This was not random confusion, that it was actually the expression of a part of the memory that he was bringing forward.

Speaker 4 (00:19:49):

And so when we talk about final gifts a little bit later, that will be one of the things that we explore is how we allow the family to use their expertise, to help us understand what the symbolic communication might be around. But I think just to kind of reinforce what Kath is saying about how, I mean, we, we know that people who’ve experienced trauma and abuse often sublimate those memories because they don’t want to hurt the people around them. Sometimes the pain is just too much to bear and they want to kind of, you know, get on with their life. They D they don’t want it to be crippled by this. And so sometimes families may not know the stories. And so we can also talk about how we might deal with

Speaker 3 (00:20:47):

That and who might, we might need to call on. Thanks, Elizabeth. And, and so just, I’m just placing this here. We’ll come back to this after, but I just want to place this at the very beginning, because I think it’s so important. And, and especially I, I think we’re hearing about this more now, but Elizabeth and I a number of years ago, we’re working with incredible group of women from a first nation community. And one of the things that came up as they were talking was stories about things that had happened to them when they had been in hospital. And some of those experiences were probably experienced when they were under an anesthetic or coming in or out. And, and so together we assisted them to write a letter about those experiences. Those letters would probably be given much more weight now than they were then.

Speaker 3 (00:21:42):

Don’t you think, Elizabeth, but the other thing that just shows is how important it is that we have an advocate with us in the hospital or, and when we’re in need. And we have somebody there to be a second set of eyes for us. So when, when you are in a situation and something’s just not right, you know, maybe it’s that maybe Sonia has gone to visit someone in their home. And they’re just not remembering who sign is, and they’re not remembering the date or the time or things that they normally get. And maybe they’re a little bit paranoid about things, and they’re, they’re confused. And they’re uptight about, about things that normally they aren’t then how important it is to gather information. So some of the things that you might observe for people with delirium, they will, they will be sudden changes in their mental processes that affect their ability to focus.

Speaker 3 (00:22:43):

So they might not be able to focus, or they might not be able to focus on you, but they, all of a sudden can hear a conversation happening across the room and pay really close attention to that. So just that, that change and focusing communication, that difficulty to communicate and maybe not find the right words, difficulty making decisions, remembering reasoning, sleeping. And as I said, in that, in that little writing about sleeping, when everyone’s awake and then being awake, when everybody wants to sleep, if you’re hearing these things, tune into them sometimes we, these things are happening all day long, but it’s not until everybody tries to go to bed at 11 o’clock at night or 12 or one. And then we realize this person is not settling. If you see these things during the day, if you hear they happened last night and you see signs of it during the day, this is, these are really good things to gather information about and pass along to the nurse.

Speaker 3 (00:23:51):

So another thing you might observe or hear is family saying things like, we just can’t keep up with them. He’s getting into everything. He doesn’t make sense. He does not seem to know what he’s. He does not seem to know what he’s trying to do, and he is not sleeping. So you might hear just real frustrations from family and with this too. Just seeing real total exhaustion from family. So sometimes when or often when it’s something like pain or difficulty breathing, we can ask the person for information on how it’s going. But at this point you may need to be asking family for information and relying on your own info on your own observations. Now Aaron, you’re not able to see because you’re, I think, well, maybe you can, but if you’re not able to, I just want to point you to the symptom framework for personal support workers.

Speaker 3 (00:24:47):

So this is adopted for delirium. So this is the OPQ R S T U V w framework. And we talked about this in the recording last month. So if you didn’t get there, there are a couple tools that we used that we are, that we introduced that are really helpful. So in this case we’ve adapted the question specifically for somebody with delirium, but I want to go through these letter by letter to just again, familiarize. So always for onset P is for palliating or provoking or palliating provoking. What makes it worse? What provokes it palliating meaning what covers it up? What makes it feel better? Q for quality? Can you describe it are for region or radiating? So where is it? So if you were talking about pain, it would be, you’d be asking, where is it as for severity? And we’ve talked about this over the months, zero to 10, with zero being no symptom to 10 being the worst you can imagine.

Speaker 3 (00:25:50):

Can you rate it severity T is for treatment. What have you tried you as for understanding, what do you think has happening vias for values? What are your goals? What’s important to you about this symptom and w what else? What else do you see? What else haven’t we captured here? What else is the family or the person saying? So let’s look at these again and go through these again, but in more detail with the questions specifically adapted for delirium. So onset, when did you first notice the changes? And before this time, when was the last time you observed the person cementation was normal or was, was confused like this does the person’s lack of concentration depends very depending on the time of day or night. So those are really good questions again. And Sonya was saying last month, that when she was evacuated from her home, that her book was stolen from the car.

Speaker 3 (00:26:49):

And I got to tell you, I was thrilled to hear this. I was thrilled that the book was in your car. Sonia. I thought that was pretty cool. That meant that it was in the car. And so when you’re in someone’s home and things aren’t going well, you can zip out to your car, open up, go to delirium, go to this page and say to the family, okay, let’s just look at this. What are the questions we need to ask? Okay. So you start to those and then provoking you’re palliating. Is this a person word or more easily distracted than previously? Does the person have difficulty following what is being said or done? And then another few questions would be, is there anything that makes this worse or that makes it better? Well, it sure makes it worse. When everybody comes to visit, it makes it better.

Speaker 3 (00:27:37):

If there’s just a few people that he’s familiar and feel safe with, or might be the opposite quality does a person’s speech sound jumbled like word salad is the person’s speech, random, unpredictable flow of conversation, switching from one subject to another, or maybe are there themes that, that are merged? Does the person understand you when you’re talking with them region, is the person lethargic or difficult to wake? Is the person acutely alert or vigilant is a person who seemed to be highly aroused and agitated, unable to settle or sleep, or maybe it’s unable to wake up severity. How would you rate this? Would you, maybe the person can rate it. Maybe the person can rate how it was for them yesterday, but maybe it’s the family that has to say, oh, I think this is small or medium or large, or this is two out of 10, or this is eight out of 10.

Speaker 3 (00:28:35):

He’s getting really anxious and really agitated treatment. What do you think might be helpful understanding? What do you think might be happening value? What are your goals for this symptom and the things that you might hear from people? Our dad was always worried about when he couldn’t be cognitively clear, like it was so important to him that he could think clearly this would be his worst nightmare. That would be an important thing for us to know. What else, what else do you want me to know? And for you as a personal support worker, consider your knowledge of this person. What do you see? What do you believe would be helpful? How important, and then to be able to take this, and I don’t know about you, but for me, I have to write things down or else I forget. So I would be writing notes as I, as we, I went through this with say the family, and then I would then report to the, to the nurse.

Speaker 3 (00:29:34):

Now let’s look at the difference between delirium and dementia. Oh, and let me just mention one other thing about about delirium. You can also have like a high hyper-focused person. Who’s just really alert and really tense and maybe even paranoid at times. And you could also have someone who’s equally as confused, but who’s in more of what we would call a hypoactive delirium. So instead of the hyperactive, the hypoactive and these people often are sleeping, but when they wake up, they’re just, there might be very quiet, but you realize that they’re also very confused. And again, you can go through those same questions and report those to the nurse. So let’s look at the difference between delirium and dementia. And if you think about the people in your life who have developed delirium or sorry, dementia so my husband would joke and talk about how he’s forgetting things.

Speaker 3 (00:30:45):

The good thing is that that really hasn’t changed a lot in the last few years. He’s not, that’s not increased a lot for people with dementia. There’s usually a slow increase, maybe more sudden, but it’s steady. And it’s over a period of months and years now, I just need to clarify my husband joked with me about his memory doesn’t mean that he has dementia. Not that we know yet so far. So dementia is a gradual onset where you could have someone with a delirium where, like I said earlier, they might be Claire at four o’clock in the afternoon at a four 20. They’re not clear. And then they may wake up the next morning and be quite clear again. The dementia is so as chronic and progressive and dementia is as a title phrase that refers to about over 200 different diseases that might relate to result in dementia.

Speaker 3 (00:31:43):

So slow decline in communication skills and abilities their attention and their alertness might be quite stable. Their activity level might be preserved and is rarely reversible. Now with delirium, the onset can be quite sudden it can be temporary. It can be fluctuating. They can have a rapid decline in their communication skills, very poor attention. And as I mentioned earlier, can be hyperactive or hypoactive and it’s often reversible. So one of the, some of the questions then that are important in this question here is w for what else what’s important and what do you value V for value? So this person, and maybe in a place in their disease where it’s important for them to go and get some blood work done, get some testing done, maybe even go from Hazleton to the hospital, or even to prince George to have things investigated. What is it that’s causing this?

Speaker 3 (00:32:48):

Do we need to do a brain scan? Do we need to do some blood work? Is there a high calcium level, which might be as simple as having an infusion of some Ivy fluids and some medications to help the person urinate off that extra excrete that extra calcium. So, so these questions have to be asked within that bigger picture of what’s important. Okay. So for you then as a personal support worker, your job will be to identify that this is happening will be to support the family, because this is so difficult, and that might include not only you, but also the, the, probably the larger community being able to support as well. But, but being able to talk with the nurse about what’s important and what’s appropriate right now, sometimes as a healthcare system, we tend to go into all of the big things that can be done and the tests that can be done. And we tend to go towards let’s transfer to hospital, let’s do these tests, but sometimes the person doesn’t want to go there and it’s enough already. And so the things that the person has been saying to you before this happened will be important for you to communicate with the team. How am I doing everyone? You onboard? Let me just see if there’s anything, nothing in the chat, Elizabeth, any comments from you about that? Just gathering that information.

Speaker 4 (00:34:23):

No, I think that is just such an important piece. And again, any kind of views that the family has or understandings of that they have of has this happened before, what did they think it means? And so on. It’s so important to pass on

Speaker 3 (00:34:45):

And I’m looking at flora, I’m wearing the mask right now and, and how hello there? Hello. So good to see your face, but you, you can leave your mask on if you’re watching, but how hard that is for people to recognize. So I’ve heard of different people doing different things to try and help people identify who they are. We’ll come back to that. Flora. Was there anything else you wanted to add? There? You look like you were ready to say something. Okay. Good. All right. Let me just see where I am here. So preventive measures. So we’ve already talked about that, the fact that many of the changes due to dying do in fact, cause delirium, therefore the goals of preventative measures are to minimize, minimize the risk of developing a delirium and minimize the risk of developing a severe delirium.

Speaker 3 (00:35:51):

So we know that most people in the, in the actual last hours, days of their life will have an infection, a bladder infection, or a respiratory infection. So and if infection is one of the causes of delirium, then how can we help decrease risks? So, though it’s important. It’s important to remember though, that delirium is common in the last days and hours, and there will be a time when delirium is not reversible. So I mentioned to you earlier about a high calcium level earlier on in the illness process, a person may be able to get blood work, find out that their calcium levels high go to a hospital, have intravenous fluids and medication a bisphosphonate that will help them to urinate or excrete that extra calcium, but there’ll be a time when that no longer is appropriate and it may not work anymore.

Speaker 3 (00:36:53):

So the person’s goals of care will help the family and team decide whether or not to investigate the cause and whether to attempt to reverse it. So preventive measures. So keeping things familiar, quiet, and safe for the person offering liquids, especially when the person is receiving opioids. So when you know, someone receives opioids, there’s a few things that you want to do. One is you want to help prevent constipation, but another one is you want to give them enough fluids so that they can pee off all of those byproducts of the opioids. Being able to maintain routines if possible, and being alert for signs of delirium. So these are some of the preventative measures now in your smaller communities. I’m thinking that in some of the small communities where you’re coming from, you may be one of just a few support workers. And so the chances, the possibilities of different people coming in in the morning and in the afternoon and the next day might not be as bad as safe for somebody living in urban area in Vancouver where there’s increased numbers of support workers.

Speaker 3 (00:38:06):

And unfortunately for a number of reasons continuity can be very poor. So this is a time when we can really push for continuity of care. And in fact, there are times when people say, well, we can’t have continuity because of the union agreement and it needs to go based on seniority. But in fact, when somebody is at, of developing a delirium, this is one time when that should not take precedence. And when continuity should be more important. This is an interesting one when we also think about the traditions in first nation communities and families, where you want the family and the community to visit. So it might be that there are times when family need to decide and family may need to say for the next few days, or when he gets upset at the end of the day, when he seems to get restless and confused, we need to limit the number of people coming to the house recording and reporting early signs of delirium.

Speaker 3 (00:39:23):

And again, just the mention here that it’s possible for previous trauma to emerge during an episode of delirium. Interesting. Elizabeth might come back to this later, but I’ll just mention too, before we understood the the trauma that this man had experienced that Elizabeth talked about. In fact, he, there were times when he was quite controlling and when he was quite specific about what did he needed and, and it was misunderstood. And when we understood the history of the trauma, then we were better able to understand his behavior and his aggressiveness or desire for control. So what can we do during an episode of delirium to both ensure someone’s safety and provide them with an environment that is emotionally and culturally safe. So what can we do to help them feel safe? But also and another thing is how can we help us as caregivers and family members to be safe?

Speaker 3 (00:40:31):

So I think of things like when somebody is very agitated and they are still up at mobile you think of things like kitchen knives, and if somebody is becoming aggressive, what do we need to do? Do we need to put anything away? Do we need to just, what do we need to do to keep this person safe? It does anything need to go away. And interesting. We’re just in the midst of doing some work on a course on cultural safety. And, and one of my concerns is, or not just cultural safety on well, culturally safe communities, but, but how do we create something that’s safe? Not only that we hope will be safe, but the person receiving it will feel safe. And if we go back though, to this period of delirium, there could be times when, no matter what we do, the person is not going to feel safe with an outsider, especially being there, or if the person isn’t understanding who it is, that’s there with them because of their delirium.

Speaker 3 (00:41:38):

So during an episode of delirium, how important it is to use appropriate communication, to also keep things simple how important it is to orientate someone to reality, if they’re in a place where they’re uncomfortable and afraid, but if they’re also quite enjoying a period of confusion and there they’re not disturbed by it may maybe we don’t need to take them away from that. Maybe we don’t need to reorient or orientate them to our reality to provide reassurance. So I like the, the ability to say, I don’t see spiders. I know you see spiders, I don’t see them. And we are here to help make it. So those spiders go away. If we buy into it like, oh yeah, I see spiders too. Then when the person becomes clear again, they may be going well. I thought I was not side. I was going crazy and I saw spiders, but the caregiver she saw spiders do.

Speaker 3 (00:42:40):

So she’s double nuts provide support during hallucinations arranging for spiritual support and coaching someone if possible. So how wonderful it is if we, if there, you know, within the community are people that are trusted members of the community that can come and sit with someone. So your job may become less about providing the physical care today and more about providing support so that the, the spiritual leader or mentor can be at the person’s side, coaching them, and you might be giving them the words to use. And so that they can coach their loved ones. So when delirium stops provide reassurance, the person may feel fearful, may feel embarrassed or vulnerable. They may be able to recall a theme that they experienced during their delirium. They might express concerns about being a burden, and they may express confusion about delirium, but also about, but I also saw some of my ancestors.

Speaker 3 (00:43:52):

So being able to talk those things through, I remember a woman who said, yeah, I was, I was really confused. I was, and I was flying over and I thought she said Holland. And she said, no, the holy land. And, and she was able to talk about some of the themes. And then she was also able to talk about some themes that were in the closet and things that she needed to clear out of the closet. So then that led us to being able to talk about what were the things she needed to declare out before she died. So it was wonderful to be able to then take those themes of what she’d experienced and then apply them when she was clear.

Speaker 3 (00:44:35):

So for the family, oh, sometimes I think when we go into to look after someone and we know that they’ve been confused where I actually need to go in and look after the family, so they may need to lie down, they may need a foot rub. They may need to talk about what’s happened. They may need to come talk about some of the themes that have emerged. And they may be the ones needing blankets and comfort items. They may be the ones needing certain music or, or a spiritual leader to come and talk with them. Being a family caregiver, as, you know, as you know, so well as healthcare assistance can be one of the hardest things, but I don’t know that there’s anything harder than, than supporting family during this, or for family to support loved ones through this. So before I go ahead, I want to talk about now about FA or Elizabeth going to talk now about final guests. And she’ll explain why we’re calling it final guests, but, but those experiences, those communications and those things of seeing ancestors, et cetera. But before we go onto that, are there any comments you have about what we’ve talked about there, any stories you have or things that you’ve seen or things that you’ve done to help people when they’re experiencing a delirium and we’ll just be quiet for a minute. So you can just think and an offer if you feel like it

Speaker 1 (00:46:09):

Catholic to I’ll, I’ll start with one. Most people are thinking I have incredible the tummy because I was called last night by a friend. His mom is in hospital and and has an intercranial pressure and has a delirium. I can resolve that. And so she wanted to leave the hospital. And so they, there was questions about restraining her in that whole conversation all throughout all her trauma of being from her childhood and residential school type work. So it was you know, we, what was comforting to her was for us to explain what was going on, take a moment to pray together and also to do some for her to go and do some brushing off. Just to clear the, the ink, it brought up for her as a family member being so far away and not being able to be there in hospital. So really shaking, shaking them up with this time period. So

Speaker 3 (00:47:04):

Thank you, Sue, and what a beautiful tradition to have the brushing off, who I don’t have that tradition and in my life. But a similar kind of thing is I’ve started to swim through the winter in the ocean, and I think it’s as close as I can think I would get to brushing type ceremony. And somehow just seems to wash some of those things away. And there are first nation traditions also to do with, with water and cold water which would also have a similar effect. So any other things, even traditional medicines or rituals use, but you’ve seen, and again, we’ll just provide just a couple minutes of quiet just for you to either think or to think and to share Sonia, did you want to say Sonja, go ahead.

Speaker 5 (00:48:35):

At the lake at the very last, usually the last little better we offer them Eagle feather, and they hold on to the evil, like why there, you can have it in their hair or they can hold it in and stuff like that. It helps them end of the trail of light because each little thing that goes up like on the eco feather, you’ll see the little strands and each one of those brands that go out represents a path that you’ve taken. And then the very center of eco feather is the main path of your life. So that the follow that one. And then when you get to the end of your life, you’re at the very end of that. And then it all represent one when that the end of the light or some of the ones that were in a hospital, for example, my dad we gave him a feather. He has on

Speaker 6 (00:50:10):

It’s Nicole. A I think about I always think of a lady who grew up in Saskatchewan and she woke up, she was on some medication and she described a little bit dreams and she said she was dreaming that she was going on a train back to Saskatchewan to see her grandparents. And as her bedside nurse, I just asked her questions about how she felt about that. It was more about the feeling and less about the dreaming. And she said she felt comforted by her dreams. And so a, I think that, that, you know, it wasn’t delirium for her. She was quite clear about it, but it was very comforting for her. And then she was actually able to share that with her daughters when they came to see her later that day at the hospital. So it was a first time I remember hearing about someone talking about traveling.

Speaker 3 (00:51:06):

Great. Well, that is a beautiful segue, Nicole, in I’ll just turn it over to Elizabeth now to talk about some of those images and experiences. Elizabeth.

Speaker 4 (00:51:17):

Thanks, Kathy. And thanks Nicole, because the final gifts is actually the name of a book that was written, oh, probably 25 or so years ago that was kind of a breakthrough book in terms of exploring pre death awareness and symbolic communication from the dying to us. There’d been a lot written about how to communicate with the dying, but not much written about how the dying might communicate with us. And and so the story that you’re telling Nicole about travel it turns out that travel is a common theme when people use this symbolic communication people often refer to travel in a way that they are comfortable traveling. So it could be a train. It might somebody once said when I was working at hospice, where’s the bus, where’s the bus, I missed the bus.

Speaker 4 (00:52:27):

And the way that they had traveled that they were most familiar with was, was taking a bus. And so the the authors of this book found in their research that the gifts that people offered in this symbolic way as they were dying often had to do with what they were experiencing as they were dying or what they needed for a good death. And the beauty of the book was that it allowed families to pay attention to those last days and hours differently than they might have. Otherwise, if somebody was saying, oh, that’s just confusion. That doesn’t have anything that doesn’t have any meaning, just ignore it, or we can make that go away with Adavan or, or whatever. And so the idea is that that family, it’s not a test. It’s not like, well, tell us what you think that means.

Speaker 4 (00:53:30):

It’s, it’s, it’s the idea of encouraging family members to, does, does this make any sense to you in this way that, you know, this person, what they’re saying does that, is that like them in any way? And so what I’d like to do is just share one story to kind of make a point about that. And, and then I’d like to open it up. And I know the choir has a story that, that I think would be wonderful to hear about someone I believe [inaudible] who, who saw an ancestor. And again, that idea of, of seeing someone seeing a presence of someone who has gone before it’s not uncommon. I think Cathaway, there’s a very good point that it’s not our role to see it to say that we see something we don’t see but rather to do what Nicole did, which is to allow the person to explore and to ask the questions that allow them to explore it to the extent that they want to.

Speaker 4 (00:54:40):

But in this story, it was a man who became very agitated as he was dying. And I think that it’s really important that we understand and respond differently when someone has a pre-awareness predef awareness experience that brings them comfort, and that makes them feel safe as this woman did about being on a train and experiences that cause fear or severe restlessness or anxiety because that, then those are two very different experiences that need to be responded to differently. So this man became very agitated and as he became agitated, he started calling out where’s the map, where’s the map. Now, you know certainly in my culture, in our healthcare system you know, on a busy hospital unit, that the response to that might be to simply medicate that anxiety and anxiousness away, but in the story, in the book the response of the, I believe it was a nurse, but it could very easily be a personal support worker was to say to the family, just a moment, you know, before we do anything about this, this anxiousness that your dad has just tell me you know, if you think of, of dying as a journey, does this make sense in any way?

Speaker 4 (00:56:14):

Is this like him in some way? And the family thought about it and they’re the ones who responded. Yeah. You know, when we were kids, we always took out a driving holiday. We didn’t always go very far, but dad would get a map and he would figure out where we were going to go on this, on this trip. And then he would mark it down on the map with a black indelible marker. And that’s the trip we would take. So this person said, okay, so, so what was important to your dad on this trip over, he had to know where we were going and so he always had the map with him. Ah, so if you think of your dad as being on a journey now, what do you think he needs to know? What’s important? And it was one of the adult children who now beside her father and said to him, dad, dad you’re on another journey right now.

Speaker 4 (00:57:20):

But you don’t need the map dad, because the way his, well signposted, just follow the signs. Dad, just follow the light. Now, the language that this daughter used, what was the language that made sense in her culture and in her religion and in her family. So the language that she used resonated with her father, it wasn’t an outside person coming and trying to decipher what this anxiety was about, what maps was about or telling him or telling the family what maps meant it was. It came from within the family and the meaning that they made of it. What was interesting was that the man settled, he settled without any medication. And, you know, I, I, when I think of that story, I think of very chill remens definition of healing, and she differentiates healing and curing. She says, caring is the fixing of something that’s broken, but healing happens when someone feels they have been seen and heard and validated.

Speaker 4 (00:58:37):

And I think that that was the gift of the book. Final gifts is that, that it offered an opportunity to pause and to think if this was a symbolic communication that would allow healing to occur at the very end of someone’s life, you know, healing can occur when a baby is newborn and someone responds to its cry and, and comfort, comfort that baby and nurtures that baby. But healing can also happen in the last literally moments of someone’s life when the people around see and hear and validate the experience that they are sharing. But I think the, the crucial part of, of the of this whole final gifts experience for me is the importance of inviting the family to make meaning without making it a test, like they should be able to make meaning simply inviting them to make meaning. And then the secondly second thing is understanding how important it is at the end of the day for the person who is dying to feel safe, to feel comfortable, to feel reassured, to feel cared for. I love the idea of the Eagle feather, because it feels like that is a tangible symbol of safety that a person can actually hold onto how beautiful that is. And so with that bit about distinguishing between final gifts and delirium. So I’d like to open that up to comments, questions, and to the opportunity for stories and perhaps starting with the Qualia’s story since she’s back with us and kill us about,

Speaker 2 (01:00:37):

Hi,

Speaker 4 (01:00:39):

I,

Speaker 2 (01:00:41):

I hadn’t realized that my phone cut out, I got home to message and say, I was going to rejoin and went, oh my God, it’s off. So I’m glad it was just the ride back from the meeting. And I thank you for the talk. I especially liked the way you use delirium as an acronym for all those different words that are, you know, the signs and symptoms that people will have, because I thought that was a good way to, for like, to me, I was hearing it and going move. I wanna remember that. And you know, in our, our we’re very spiritual and in our family you know, when my late brother, he died unexpectedly when he was 19 through family violence. Right. But for about three weeks or so before he passed away, he kept seeing and talking with my, our lake grandfather.

Speaker 2 (01:02:01):

And he, he knew that his time was coming up soon because he was talking with grandpa who had told him that he was here to take them home to the creator and ancestors. And then when my grandmother, I was taking care of her, you know, at home because there was a nurses strike. And just before she passed away probably about the week before she would at nighttime, see grandpa and said, he looked young again, like when they got married. And some of her children that she had lost and other family were coming to see her and saying that they were coming to bring her home. And, you know, that’s why the old people say that when you leave this earth, especially when you’re an elder, they always said, and I learned this one, I was young with, I’d go to the funerals with my grandpa.

Speaker 2 (01:03:13):

And they taught me. They said when you leave the service, you usually go back to the happiest time in your life. And usually that’s when you either got married or when you had your first child. And so you always, you know, because they say you’ve got no more pain, no more. Worries. You, you know, there were the ones who were left here on our life’s journey, who have to worry about the daily worries of living and supporting ourselves. And so, you know, that’s one of the teachings they share. And they always said, you go back to the happiest day in your life. And when you’re a young person, that’s usually like, my brother died when he was 19. And I think that happiest time in his life was when his son was born the year before. So he always looks like how it was when he was 18.

Speaker 2 (01:04:24):

And then they say that if babies pass away, they don’t stay babies. They grow up. And my mom, when she was starting to get to the point where she was going to be leaving us, she said, I saw your cause I lost my breath. She lost my brother, Michael, who was born a year before me. Like 10 days after he was born to, you know whether they called it crib death. And he was in the hospital, he had been born early and he was still in the hospital and he left, passed away and I was born a year later, but she said, I saw mom and dad. They looked real young. Like when they first got married, they looked so happy. And I saw your brother, Michael. And he was a young man or, you know, to her, he was young, but he probably would have been in his sixties. Right. And so, you know, and then others have said that they see the family. And so we always feel reassured and know that when they leave us. And they’ve said, they’ve been seeing a family that they didn’t suffer. The, our family came and grabbed their hand and took them home. We say home to the creator and the ancestors on the other side.

Speaker 4 (01:06:04):

[Inaudible]. So That’s sharing thing that they experienced.

Speaker 2 (01:06:10):

Yes.

Speaker 4 (01:06:11):

And it also is a, it’s a timing thing. Isn’t it. So quiet. I can let you know that that the time is coming when you will be guided.

Speaker 2 (01:06:20):

Exactly. And you know, a lot of people fear, death and DNO. Lots of people fear death, but DNO, it’s just one of the doors in life that we’ll have to go through. And, you know, we’re born, we’re babies, we’re children or adults, and then more elders. And then we leave this earth and you know, they are family comes to see us. And that’s why in my prayers, we say like you know, people have experienced where they say I could have been hit by that car or that truck, and I probably would have died, but something stopped me or I could have thought on that plane. I had, we had a friend who said I could have got on that plane and prince George to Vancouver, but something’s stopped me. So the traffic was really bad and everything. And I was so angry because I missed the plane.

Speaker 2 (01:07:33):

And the weird thing is, is that plane crashed. And he probably would have passed away. And he was a non-native. And he said, a lot of you, when I said I was on my way down, said, we’re sending you prayers of protection because it was snowing lawns and Gino. And he says, I believe in your prayers. And that the ancestors were watching over me. And, you know, if you, they say, oh, I could have, you know, been seriously hurt in this accident. Or like someone said they were coming down from Squamish valley of Beau month ago and something happened on the highway and they said all of a sudden somebody, the drivers has been formed. And so she pulled over and stopped and to talk to them and whoever was with her said, just pull over and, you know, stop driving let’s deal with it.

Speaker 2 (01:08:42):

So she did. And then when they, the car that was behind them had kept going and a truck, something had more, a big truck tipped and its load land it right on that car. And if they hadn’t pulled over to take that phone call, that would have been them. And they got out and went and helped. But the mom and daughter that were in the vehicle died on site and they were just like, shook it up and saying, that would have been us because that’s a car that passed us as we pulled over to take the phone call.

Speaker 4 (01:09:32):

I think that idea of being cared for, and the sense of being looked after is so important. And, and, and it just takes me back to the idea of how important it is for someone who is either delirious or this is an experience of final gifts that they also feel that sense of safety and of being well cared for and and looked after. And I would just say this to PSW is that, you know, I said, it’s not a test of families. It’s not like, well, tell us what you must know, what this means. Tell us what you think it means. It’s just an invitation. It’s not a test for PSW is either. And I think if you come across someone who is either experiencing delirium or that it is a repressed memory of abuse or violence that is now emerging or resurfacing that, you know, when to call for help and that you feel comfortable calling for help. So whether that’s from your team, from an elder, from your supervisor, that it, that you not feel like I should be able to do this. I, I have to be able to make this okay. That, that you are very comfortable getting the support you need for that.

Speaker 3 (01:11:01):

Elizabeth, thank you. And I think that’s, that’s a beautiful way to finish in terms of not only safety for the person, but safety for you as the caregiver safety, physical and emotional safety for you as a caregiver, but also within team. And as we finish this, this series, I think one of our hopes would be that the not only are you a good advocate for the people you care for, but that you advocate well for yourself and that you develop and build strong networks around you, both within your immediate team, but also perhaps online, you know, you’re, you’re here with people from different areas of the province. There’s, you know, you can, you can connect and share emails while you’re in these meetings. And you can develop those supports across the province. And and if you’re in a situation where you aren’t sure how to develop those or whatever, then, then I think that that’s one of the places where you know, th that Sue may not be in your regular pocket for calling on a daily basis for some things.

Speaker 3 (01:12:19):

But if you need to sort something out with someone and figure out, you know, how do I build my support network? Having a good support team is such a valuable thing. So Elizabeth and I give thanks for the opportunity to have worked with each of you to meet you today, to have met those who have come for other sessions, who might be listening in, we are, we are grateful for the opportunity to rub shoulders, even if that has been through this very strange time of this pandemic. And if it’s been online we have, we have fought of you across the province as there’s been fires this summer. We’ve thought of you as there’s been the challenges with COVID and increase in counts in different places, in different communities. And and just to express our honor at having been involved with you and with the gifts that we take away and like to acknowledge again, in this of all sessions, just the many, many gifts within the first nation peoples and how grateful we are that our lives have been touched and strengthened both through our work with first nations, health authority and through our dear friends and loved ones.

Speaker 3 (01:13:40):

And we give thanks. Thanks Kev.

Speaker 1 (01:13:45):

Oh, thank you so much, Kath and Elizabeth for sharing the wealth of knowledge that you have both have on delirium.

Common Symptoms: Tools to Help You Gather Information

 

| Transcript |

(unedited)

 

Speaker 1 (00:00:02):

And I know the other coast Salish lands and also honor respect and acknowledge the ancestral traditional lands of your nations and where you live, work and play. So I’d like us to a thank you for coming together and that we can be one heart, one mind in Chama and squall one, as we do this important work that, you know, we all move through life and I’ll reach this place where the training is for. And one, we finally get to go on our journey to creator or ancestors. And so my hands are up to you for being able to do the training and be able, know how to, as I’m my old people, my grandfather taught me, change and withstand and work together to hold each other up, support one another and help each other.

And that’s what you’re learning to do to have the tools and gain that what you need to change and strike in the work that you’ll do with people. So my hands are up to you and I’ll just ask you to open your hands and come together and we’ll sit, I’ll say a short prayer for you to start the work today.

 

[Prayer]

Those are my words, and I turn it back over to Jackie and Kath.

Speaker 2 (00:02:39):

Thank you, Sequalia. It’s always so nice to, to venture into new, new work, new new gatherings of people with a prayer and a welcome to your, your lands for that. Yeah, I really, we’re gonna pass it over to Kathy. She said she’s ahead of the show here. And I know she we’ve talked earlier about this what we’re going to be covering today and I’m looking forward to being a part of it. And Kathy,

Speaker 3 (00:03:15):

Thanks, Jackie. So, so much has been going on in your lives. Sonya has had fires this summer rate close by. We’ve been talking, we talked for a few minutes before things started about also still dealing with COVID rules and regulations and and I’m, and then of course, the deep Searles of finding of the the unmarked braille grounds of children in Kamloops and, and other places. So it’s been huge. And I just would like to do, just to start now to just touch base with you and see how you’re doing and if you’ve been able to well just how, how are you doing Aggie? How are you, how are you today?

Speaker 3 (00:04:12):

I’m being good today. Yeah. And how’s the summer been for you too? Any comments you want to make? No, not right now. Okay. is anyone else wanting to share anything before we start? So I have a story that I’d like to start with today. That is about care that was given on a first nation community up the coast, just Northwest of Powell river. So I’ll just share my screen. What I’d like to do is just start with sharing this story about a community Laquisha [inaudible], which is north of Prince Rupert, and in order to get there. So I’d like to tell the story about Frank. He’s a first nation elder from the, from this remote village  coastal village, north of Prince Rupert, south of the Alaska panhandle.  you get that to the village by taking a 45 minute ferry ride from prince Rupert to a nearby port, and then drive another 30 minutes to the village.

Speaker 3 (00:05:30):

Frank was from this community and lived live there in the community, I think was raised there. And when he became sick, he wanted to go home to his community and to die there. The siblings, his siblings and nurses responded. But it wasn’t was not easy to care for a loved one anywhere, but to respond to a sibling’s wish to die home in this small remote community is even more remarkable. And I’m so glad we’ve got someone from the remote areas or the more rural areas that you are from and perhaps quite remote. So the siblings work together and reached out to support to the support workers and the nurses when needed the support workers and the nurses who cared for Frank and supported his family were employees of the first nation community, the first nations health authority and Northern health. They were all creative.

Speaker 3 (00:06:27):

They were collaborative, they collaborated and they communicated and they faced more than a few challenges. For example, to get a bed to the community required working across geographic boundaries and required that the home care nurses who worked for the band communicated with the clinical clinic nurses hired by first nations health authority, and the prince Rupert team hired by Northern health. And it took a month to get the bed, but the Fen finally it arrived to provide daily support, the support workers and the home care nurse hired by the band collaborated with the clinic nurses hired by first nations health authority. So to provide best coverage, they collaborated and arrange visits that coordinated schedules. So, so that instead of everybody doing their own thing, that they were able to work and try and provide best coverage. And then of course, they worked with family to try and figure out what it was that family needed.

Speaker 3 (00:07:28):

Most. I love this photo. And so Frank came home to his home and the support workers and the nurses from the band. And from first nations, health authority also met with the Northern health palliative care consultant by a phone and Sandra from Northern health, provided them with education about symptom management. She taught them what to look for, what to do. If the symptoms increased, where to call when to call who to call and taught the family and support workers to access medications for symptom management, the bend nurses and the clinic nurses communicated with the Northern health palliative care nurse and the palliative care physicians. The local prince Rupert physicians were uncomfortable ordering opioids for someone they didn’t know him would likely not see again. So it was incredible. The physicians from prince George made themselves available 24 7 to order what was needed. But what I love about that piece is that they trusted those physicians, trusted the nurses assessments, and the nurses were able to complete assessments in a way that the physicians could understand to ensure that medications were available. The nurses had to calculate the current dosage and estimate what might be needed if for when pain or difficulty breathing increased. Or if new symptoms emerged, the nurses were well aware that the trip to get medications included a 30 minute car ride, a 45 minute ferry ride and a taxi to the pharmacy. There was no quick option. There was no opportunity to run out of meds and have some something delivered right away after death. The family cared for Frank’s body in the community.

Speaker 3 (00:09:17):

They observed the traditions and the ceremonies that were important to them and to Frank.

Speaker 3 (00:09:34):

And they buried him on a little island, burial ground, where his mother and father were buried years before there was no disruption, no delay or extra expenses, no waiting for the body to be returned to the, to the community from a funeral home or from a hospital. So in this story, we honor and celebrate the exceptional work done by these compassionate and creative caregivers, working in exceptionally difficult circumstances every day to care for Frank who experienced some complex symptoms. So in this, I acknowledged Billy Spence, the brother Sharon hurdle, the sister, Connie, Henry, the sister and Henry spent some brother, Mary Henry and niece and Susan Dennis, a niece, the [inaudible] home support workers, Dora Wesley and Amy Sampson, the band nurses, pat Lewis and Susan Vickers, and the first nations health clinic nurses and the rest of the team, Lacey Woolston and Jessica hardwood, the Northern health palliative care physicians, the Northern health nurse consultant and the first nations health authority nurse practitioner, Shirley Nixon.

Speaker 3 (00:10:45):

I was told that this was the first successful plan death in the community in years, where the dying person was well cared for. And the nurses had the equipment, the medications, the collaboration, the plan, and the knowledge they needed to carry it out. And one person on the team told me that she will remember this teamwork and collaboration for the rest of her career. We acknowledged that Frank’s team represents many teams who think outside the box, who are creative and collaborate to ensure great patient care and, and just express gratitude that that care was provided through to his final journey on this earth and, and how important it is that that kind of story not be a unique story, but in fact, be something that we can all strive for.

Speaker 2 (00:11:38):

I just wanted to welcome Laura, who had just joined us during your presentation.

Speaker 3 (00:11:43):

Hi flora.

Speaker 2 (00:11:45):

Hi flora. Where are you calling from lens? You come from …. She’s having some audio. Can you tell us where you’re from? Flora? Oh, we got Caroline joining us as well. We’ll wait for flora to

Speaker 3 (00:12:30):

Flora, same place as me And put it on in the same building, I guess.

Speaker 2 (00:12:39):

Oh, okay. Awesome.

Speaker 3 (00:12:41):

Great.

Speaker 2 (00:12:43):

I know you probably have some audio on

Speaker 3 (00:12:48):

And Carolyn welcome. Carolyn. We can see you talking, but I can’t hear you.

Speaker 2 (00:12:59):

You have to unmute. Oh, trying to figure it out. Let me send her a little chat.

Speaker 3 (00:13:16):

Is it Karen? Karen, Billy from Bonaparte. So

Speaker 2 (00:13:33):

Yes, Caroline, Billy. She says Carolyn Billy.

Speaker 3 (00:13:36):

Oh, great. Well welcome. So my goodness, Carolyn, you have also been in the thick of things with fires this summer.

Speaker 2 (00:13:48):

Yeah. You can only do the messages, the chat box, unfortunately.

Speaker 3 (00:13:54):

And flora saying she can’t put the speaker on, but does that mean she’s is she able to hear us for, are you able to hear us?

Speaker 2 (00:14:08):

I don’t think so.

Speaker 3 (00:14:14):

Okay. so I wonder if, if you, if anybody would like to share your stories of, of what you’re seeing in your community with the people you’re caring for, who are living with life limiting or terminal illness, we tend to use the name, life limiting now in terms of symptoms, are you seeing things like pain and nausea and vomiting, decreased appetite? What are the main things that your individuals and your families are struggling with?

Speaker 2 (00:14:55):

Feel free to answer in the chat box. I’ll be monitoring that for those who are having audio issues.

Speaker 3 (00:15:06):

So these are the, these are the most common symptoms that we see, and they are the ones that are identified, plus a few others that are identified in this text here that I think each of you have a copy of this on your, on your, in your units, in your offices. Has everybody been able to see or find one of these flora? I see that you’ve un-muted are you able to, do you have one of these flora You might’ve, I needed, but I’m not sure that you can hear us. So I gave him, you got one of these on your site. Yes. We all got one and she’s supposed to be on here too, but she’s not. Okay. So some of you have that. So we’re going to talk about some of the pieces in there. So

Speaker 2 (00:16:05):

No one has a comment, sorry, cat. That I see my elders having decreased appetite, fatigue and pain, and and Gail from Campbell river, I can hear and see all the, my camera and volume are not working. We can’t fix it right now.

Speaker 3 (00:16:27):

Oh, well welcome reel and I’m sorry.

Speaker 2 (00:16:33):

Yeah. Holly, you get all thread from the other building. Yeah. Especially in, is being recorded by the way. And it won’t be available. I don’t labor

Speaker 3 (00:16:53):

Some of the con the symptoms that we see most commonly include these ones that I’ve identified here. So in an ideal world, it would be wonderful to hear about your experiences and what’s difficult. And sometimes people will say, you know, one of the most difficult things is gathering information. So I can share it with the team and communicating that information to the team or knowing what to do to help in terms of comfort measures or how to help the family to integrate traditional medicine. So those are some of the, some of the challenges. But what I’d like to do is just give you, give Jackie just a time to talk about she, Jackie has offered to tell the story or to share a piece of the story about, about her mom who was ill. Jackie, can you go ahead?

Speaker 2 (00:17:49):

Yeah, it’s I, my family is from at a WABA Scott I’m from Ontario Northern Ontario, just on the cuts of the Jane James bay. I don’t know if you know any of that. And so I’m, I’m Crete. I was born and raised in Toronto. My mom, it was just my mother and I, and my aunt. We were very close and so I lost my mother. Almost a year. It’ll be Tober 18th will be the day of her passing. And she had chronic pain and, and for a very long time, I would say about maybe eight years before she passed. And you know, she you know, was on social assistance and she lived in a supportive housing at a place called the wigwam and, and next door is the native friendship center and they had their own sort of healthcare aids support, personal support workers that assisted the elders in the building.

Speaker 2 (00:19:10):

And so she had support, help, you know, with groceries, I’ve been in like housework and that sort of thing. But as the years went on she started to lose her ability to to do that stuff. So she needed a lot of support. And she’d been in and out of hospital. She had a lot of gastral issues. A lot of I forget what you call it neuropathy. So she had a lot of pain on her limb, her feet and she was in her eighties and she experienced a lot of urinal infections and you know, she had arthritis as well. So giving medication, you know, you don’t want to give her two bags, you get too groggy, then you, you know, fear of falling, she’d never broken any bones or anything.

Speaker 2 (00:20:19):

And she’s had a lot of we call it, I guess, the number two sort of what do you call that? I’m a loss for words, but we suffered a lot and you know, lack of eating, wasn’t drinking enough water. Of course with that, there’s confusion a little bit. Oh, constipation, thank you. So she’s passed out a couple of times because of that. And so she was sort of what, you know, the terrible terminology with like the frequent flyer at the hospitals where they, I mean, she was seeing the specialist the best in the city. Right. But it was really about pain management. And if one day was worse than the other, then it just the pain management wasn’t you know was it really effective every day? So it’s some days it would just be so worse that she was unable to do anything.

Speaker 2 (00:21:31):

And of course, I, you know, when she started to get more seriously ill, I was already living in DC, but I had great relationships with the program support workers there. And I was able to work with the social services, the offered nurse visits and this sort of thing. You know, and then she had her, I guess, I think it was our pasture or father that would come and pray with her. And so she had, you know I guess, connection to the community, you know, in an urban setting, like she lived in Toronto and her sister was downstairs and friends would, you know, neighbors would go and run out and get her medications and stuff like that. But you know, that one visit to the hospital during COVID yeah, she just never came out from that. She was in the hospital for six weeks and it just got progressively worse. And she had she started to develop that curved spine and she was so, so thin, and we can so weak that she really couldn’t push her Walker anymore. That sort of thing. So I haven’t, she passed away. Right.

Speaker 2 (00:22:57):

Sorry, you know what I was with her. So that was good. I was, my work place was very kind and letting me spend those, you know, those two butts there at three months before that my aunt had passed away. So I think, you know, that had a lot to do with her dying as well. Like I didn’t realize, or she didn’t realize that she needed her sister, you know, or my aunt, but yeah, anyways, that’s, that’s a story of my Bob. You,

Speaker 3 (00:23:45):

Sometimes it’s in sharing our stories that we can figure out, we can bring them home and, and figure out how we can improve the care that we’re doing in Jackie’s case. Your mom was on the other side of the country. Well, halfway across the country. For many of you, you’re carrying in, for many of you, you’re caring for people where the, the nurse, you might be right there, front and center, but the nurse is across the town or busy or not coming to town. So when I was talking with Sonia James earlier, so she’s in a little latch and there’s a nurse that comes in one and a half days.

Speaker 3 (00:24:33):

That’s not. But when, when some, when, when the nurses out of town you ha you’re the eyes, you’re the ears. And so what information do you need to gather? How do you communicate it and how can you be best heard? And so your role as an advocate where you are encouraging people to provide care that’s needed, you need to be best prepared for that. So the thing that I’m going to talk about today are a couple tools that you can use, or a few tools that you can use that will help you be able to speak in a way that you are more likely to be heard. Does that sound okay?

Speaker 3 (00:25:25):

You okay with that? So I’m going to start by talking about a tool called I’m sorry, Jackie, where you saying something. Nope. Trying to meet. Okay. So the, the standardized tool that we’re going to talk about acknowledged that you are often the ones providing the majority of care, direct care for the person, and you get, if you can gather information and record and report that and collaborate with the team, you’re more likely to get the support. And one thing Jackie said to me when we were talking about her mom’s care earlier was that because she knew the terminology then, and also when she has sought out, help that when you know the terminology or when you know how to express it, you’re more likely to be heard. I’ve often had healthcare assistants say the nurses don’t listen to me. And I’ve had practical nurses say the registered nurse doesn’t listen to me.

Speaker 3 (00:26:34):

And I’ve had all nurses say the physicians don’t listen to me. And I’ve heard patients and families say, no one listens to me. And sometimes we’re not heard because we haven’t expressed it in a way that they can understand it. So the purpose here is to, is to gather, to have some tools that’ll help you. So being familiar with the person and their family is helpful and asking open-ended questions and of course included translator when needed, but what needs to be considered. And I’m just going to show you one tool. This particular tool is called the palliative performance scale. It was developed here in Victoria, BC, and it looks at ambulation. How active is the person, how much evidence there is of the disease. If the person’s able to do their own self care, what level of intake and what their consciousness level is.

Speaker 3 (00:27:42):

So this may just look like a a boring form, but you know, what’s incredible is if you go to see somebody on Friday and they, you know, they’re not moving as much as they used to, oh, maybe they’re sitting in line and they can’t do any work. So there’s extensive evidence of disease. That’s fine that hasn’t, that’s been pretty constant lately. But then here with self care, this person used to just need occasional assistance, but now is needing mainly assistance. They’ve got a reduced intake and they’re kind of confused at different times. Well, if you go in on Monday and that’s how the person is, or you go in and you haven’t seen them for a few days and they’ve had considerable change, this is important just to report. Now, it could be that in your area, they don’t use the palliative performance scale.

Speaker 3 (00:28:38):

So for you to say, oh, it looks like she’s, she’s gone from a PPS of 60% down to 40%. The nurse might go well, what’s that? Or the nurse, or somebody might say, well, that’s not up to you to assess their PPS. Well, instead of saying them, giving this a number, you can say Charlotte is, is mainly in bed, but a few days ago, she was just up in and had reduced activity. She’s not able to do any of her activities. She needs mainly assistance. In fact, she’s almost total care. She has reduced intake and she’s drowsy. And she’s confused at times. Well, you have just given this nurse really a very big piece of data. One that this is a big change. And two you’ve described everything here. And now the nurse has a whole picture as to what’s going on in terms of the person’s level of functioning.

Speaker 3 (00:29:39):

So this is in your in the integrating a palliative approach texts. And you, if you take that with you, if it’s just in your bag, or if it’s on the unit or there your office, you can look and you can just refer to it. So this helps you to it, you know, if you have someone who’s changing in their health status regularly, then you want to keep doing it. If somebody has been the same for weeks and months, you don’t need to worry about doing it every day. So I gave you an example of a report. So I’m just gonna keep going here. Sorry. I want to show you then another tool, which is called the empty Edmonton symptom, assessment scale or Edmonton symptom assessment system. Are you all able to see that? Okay. Carolyn, can you see that? So one of the things that’s neat about this tool is that there’s an opportunity to look at a number of different symptoms.

Speaker 3 (00:30:43):

So again, you can just take your book and show it to someone, or you can photocopy it, or you might have one in your, in your filing cabinet or wherever at your office. So in this one, you, you look at it with the patient, with the client and you say, look, are you having any problems? Have you got no pain or worst possible pain? And they might say, oh, around six, or they might say, oh, 10. Or they might say, oh, I hate this number system. And you can say, well, is there somewhere on this line that you would like to circle then instead of using the numbers and maybe then that they, or is there a word medium or sorry, big, medium and small. So then big would be the number 10 and medium would be number five and small would be number one or two.

Speaker 3 (00:31:33):

So what’s neat about this is you can show this to someone and they might talk about shortness of breath and you’ll go, oh, I had no idea that you were shortness of breath, short of breath, or they might talk about their wellbeing. Just being really in, you know, shot that they just not feeling well at all. And that there’s totally drowsy or they’re totally tired or weak. So you get information that you might not have got otherwise. And, you know, you don’t want to go into somebody every day and go, are you having any pain, any tiredness, any drowsiness, any nausea, any lack of appetite, any shortness of breath, any depression, anxiety, wellbeing, any other problems, you know, like you don’t want to, you want, don’t want to bore them with that and traumatize them with all of that. But this gives them a chance to say what’s going on for them.

Speaker 3 (00:32:27):

It gives a snapshot. Now let’s just say that they say they’re having pain. Then one of the nice things you can do then is give them a body map. And the, on the body map, they can color the different areas that they’re having pain. Okay. So say you identify, well, we’re going to use pain as an example today that somebody is experiencing pain, then you can ask some questions and the questions are framed on this. O P Q R S T U V w. And so O stands for onset. So when did this begin? So Jackie, would you play with me for and we’ll just play this together and let’s, you can just make something up if you can just pretend that you have a symptom of pain, and I’m going to ask you when it started and for this case, I’m going to ask you that it’s something that started this morning. Okay. So Jackie, when did your pain start?

Speaker 2 (00:33:28):

About eight o’clock this morning when I woke up.

Speaker 3 (00:33:32):

Oh, okay. And now you can do it and follow through these letters completely. It doesn’t really, it doesn’t usually I would ask, well, where is your pain, which would be number or for letter R. Usually you go with what? Makes sense. And they’re just part of conversations, but other times, if I’m just really trying to follow and make sure I haven’t forgotten the letter, I’ll go back and then just check afterwards. So Jackie, what region or whereabouts is your pain?

Speaker 2 (00:34:09):

My look my back on my right side.

Speaker 3 (00:34:12):

Okay. Lower back or lower back or just mid back or where?

Speaker 2 (00:34:16):

Mid back.

Speaker 3 (00:34:18):

Okay. And it’s interesting. I wanted to, I’m writing down notes as I’m talking to her because I want to be able to report it. And in my mind, I went right away to her lower back and I went to say that to her. And as soon as I said it to her, I thought, Hmm, I don’t think she said lower back. She said mid back. Okay. So can you describe it, like give it a quality, like what words would describe it? Jackie

Speaker 2 (00:34:44):

Sharp shooting,

Speaker 3 (00:34:46):

Sharp and shooting. So when you’re saying shooting, where does it shoot to

Speaker 2 (00:34:52):

It? Shoots to my lower, my lower spine and my shoulder blades.

Speaker 3 (00:35:01):

Oh, wow. So it goes down to the lower spine and up to your shoulder blade. And are you meaning your shoulder blade? On the right side. Okay. Oh, both shoulder blades? Yes. Oh, wow. Okay. And can you tell me what does it, what makes it feel better or worse? Is there anything

Speaker 2 (00:35:24):

When I’m lying down on my side,

Speaker 3 (00:35:30):

That makes it better.

Speaker 2 (00:35:32):

Yeah. So I put a pillow between my legs and I, I have that elevation.

Speaker 3 (00:35:39):

Okay. And lying on your right side or your left side?

Speaker 2 (00:35:43):

My right. Okay.

Speaker 3 (00:35:46):

And what makes it worse

Speaker 2 (00:35:51):

When I stand up?

Speaker 3 (00:35:53):

Okay. Anything else?

Speaker 2 (00:35:57):

Hertz when I go to the bathroom, when I have to sit down.

Speaker 3 (00:36:02):

Okay. And can you rate it on a scale of zero to 10 with zero being no symptom at all and 10 being the worst imaginable. Does that number scale work for you? Can you try and do that?

Speaker 2 (00:36:17):

I would say a nine. Ooh, it’s not sharp shooting. I would say a five.

Speaker 3 (00:36:24):

Okay. So you’re talking pretty constant pain. Yeah. So it’s constant. And before today, did you have any pain like this or is this a totally new pain? Like, is it connected with chronic pain or is this a, all a new pain?

Speaker 2 (00:36:41):

It’s a new pain, but when I, I get sore backs from before, but this is a new,

Speaker 3 (00:36:53):

Okay. Now, Jackie, when you say nine out of 10, and I’m thinking that 10 is the worst patient pain, you can even imagine. And yet you’re sitting, looking very straight faced and very stoic. So are you understanding that tennis? Can you, can you clarify? So if 10 is the worst pain you can imagine. So even though you look very stoic right now, you’d still put it around a nine.

Speaker 2 (00:37:26):

Yeah.

Speaker 3 (00:37:27):

Wow. So looking at you, Jackie, I wouldn’t have thought it was that severe, and I’m saying that not to criticize or to critique your number, but to say, wow, you know, people have pain that we don’t even have a clue. And the same for difficulty breathing, we could think that they don’t have much difficulty and then find out that it’s really severe for them. So what treatments do you think might be helpful? What have you, what things have you used in the past that you think might be helpful?

Speaker 2 (00:38:00):

The good old Ben gay.

Speaker 3 (00:38:04):

Okay. And that is that rub that you put on?

Speaker 2 (00:38:09):

Yes.

Speaker 3 (00:38:10):

Okay. And do you take anything else or be Troy. And have you tried the Bengay today?

Speaker 2 (00:38:16):

I, yeah, I put the Ben gay on and I took some Tylenol.

Speaker 3 (00:38:21):

And did that help at all?

Speaker 2 (00:38:23):

A little bit.

Speaker 3 (00:38:25):

Okay. So then did it take the pain from a nine out of 10 down or down a bit?

Speaker 2 (00:38:34):

Yeah, maybe to an 0.5.

Speaker 3 (00:38:36):

Oh, not a whole lot. Okay. So what do you think I’m gonna, so I, if you’ve noticed here I’ve done the old for onset P for provoke. What makes it worse? Palliation? What makes it better quality? Can you describe it R for region? Where is it as for severity T for treatment? So now, like, those are the real kind of concrete detective kind of questions. Now these are the ones that are more Explorer questions of trying to get at what Jackie knows what she feels, what she, how she values this. So what do you think might be happening? Jackie?

Speaker 2 (00:39:20):

I have a feeling maybe it’s feels like a bone, like a bone cancer or something. That’s my way here.

Speaker 3 (00:39:31):

That’s your biggest fear. Yeah. Okay. Now, and, and if this was real life and say Jackie had a different cancer diagnosis than what she might be saying, as I’m worried that it spread to the bone or whatever. So Jackie, any other thoughts on that?

Speaker 2 (00:39:53):

No, I I’m. No. I mean, I fell on my back and gymnastics when I was a teenager. So I think maybe it’s that too coming back.

Speaker 3 (00:40:09):

So yeah. So Jackie, what are your goals for this symptom? So this comes under the letter V for the team here of values. You know, what’s important to you. The other way we say that is what’s your goals, or what do you want to see happen? What are your hopes here? So Jackie, what’s your goals for right now?

Speaker 2 (00:40:30):

My goal is to get to check it out whether you know to do all the tests possible, but to you know, I have a feeling it’s going to be a permanent thing, so I’m hoping that I could find some sort of comfortableness that’s manageable.

Speaker 3 (00:40:59):

Okay. So get this checked out and get tests done if needed everything that’s possible, but also to find some comfort. So is there anything else you want me to know, Jackie, like I’m your home support worker or your health care assistant? I may or may not know if you have any other diagnosis. So is there anything you want to tell me? Like, do you want to, like, maybe you just, maybe you just hurt yourself today. Maybe you just woke up and it’s a bad day, or maybe this is part of a bigger disease. So is there anything you want else you want me to know?

Speaker 2 (00:41:40):

No, I, I guess in terms of, I don’t know maybe I’m not taking enough by the vitamins or Kelsey that might help.

Speaker 3 (00:41:52):

Okay. So would it be okay with you if I called the nurse?

Speaker 2 (00:42:00):

Which one?

Speaker 3 (00:42:01):

Well do you have a preference,

Speaker 2 (00:42:06):

Gloria.

Speaker 3 (00:42:08):

Okay. And can you tell me why Gloria she hired by the band or by the, is she a health authority nurse or, or what?

Speaker 2 (00:42:19):

She’s with the band

Speaker 3 (00:42:20):

She’s with the band. And so she might be local and nearby today.

Speaker 2 (00:42:26):

Great.

Speaker 3 (00:42:27):

Okay. So, so now folks, what I would do now is I would take first of all, how was, how was that receiving those questions? How, how did, was that like too intrusive or anything?

Speaker 2 (00:42:40):

No, I don’t think so.

Speaker 3 (00:42:44):

So sometimes people say, oh, it’s not the HCA is, it’s not the healthcare assistance role to, to assess pain. Well, have I assessed anything? No. All I’ve done is gather information and now I’m going to take this to the nurse.

Speaker 2 (00:43:00):

Right.

Speaker 3 (00:43:01):

So is that comfortable for everyone? Any comments, any comments in the chat that you want to put? No. I’m going to talk about the S far and communicating, but any comments, Jackie, anything showing up in chat there?

Speaker 2 (00:43:29):

No. Flora can hear us now, so that’s good.

Speaker 3 (00:43:32):

Oh, flora. I’m so glad.

Speaker 2 (00:43:36):

Yeah.

Speaker 3 (00:43:38):

Okay. So, so I’m going to take this and I’m going to call Gloria the band nurse, the nurse from the band. And so Jackie, do you want to play Gloria?

Speaker 2 (00:43:52):

Gloria’s the nurse.

Speaker 3 (00:43:53):

Gloria’s the nurse. Do you want to play her?

Speaker 2 (00:43:56):

Okay. Sure.

Speaker 3 (00:43:57):

Okay. Now the reality is, is that Gloria probably knows Jackie really well and does not need much of an introduction, but we’re going to pretend that maybe she doesn’t so that I can just practice this. So hi, Jackie. My name is Catherine. Hi, Gloria. My name, my name is Katherine Maria. And I want to talk to you about Jackie carpenter. I’m concerned because when I went in to see her today, that she’s has a sudden onset of a pain that’s quite severe. And her background is I’ve known her over the few years and she’s been pretty stable and I’ve seen her and, you know, I provide care to her. She’s normally mobile, she gets up to the seat. She needs to her chair. She needs a minimal assistance, but today she’s very different and she’s in bed and she’s really looking uncomfortable.

Speaker 3 (00:44:56):

So I haven’t completed an assessment as such, but I did gather information. And so if, can I just give you that Infor info? Is this a good time to talk? Yes, please. So sorry, let me get her file. Oh, okay. Okay. So apparently this morning at eight o’clock, as she woke up and she was having pain in her, right. And her back the right side, mid back. And she describes it as sharp shooting that goes to the lower spine and also goes up to her shoulder blade, both her right and her left. She, she says that she’s better lying on her right side with the pillow between her legs and that it’s worse when she’s standing or she uses the bathroom and as she’s sitting, but, but Gloria, what concerns me is she saying the pain at its worst is about nine out of 10.

Speaker 3 (00:45:57):

And you know, when it lightens off a bit, it’s five out of 10, but that’s huge. But what’s interesting is like, she doesn’t look like she’s, you know, she’s just looking really stalwart and strong. And I wouldn’t have known that her pain was at a nine out of 10, but I also know her that she doesn’t like to mention pain or, and she always just is so strong. This is definitely a new pain. And she does have a history of a sore back. And apparently she fell years ago. Doing gymnastics, I think she said, but I might have that wrong. Or maybe it was that she fell when she was a teenager. She for treatment, she had used some Bengay ointment and some Tylenol, but that only took her pain down to like an eight and a half out of 10. So it didn’t really settle it a lot. She’s wondering if she has bone cancer that’s her biggest fear. Yeah. And she wants to get it checked out. And if that means a bunch of tests and she’s, that’s possible if that’s possible, she’d like that, but she’d also liked to get comfortable. And she’s also would like to know if she needs to take any vitamins. So my request for you, I’m wondering if you can come and see her and also what you recommend that I do now. I would, I will come and see, or I can come at the

Speaker 2 (00:47:29):

End of the day. And I would recommend that you do the the heating pad. Have you actually tried the heating pad?

Speaker 3 (00:47:43):

I don’t think she has. I’ve got this, I got this textbook here and in here, there’s some things you can do. There’s mention of things that you can do for comfort measures in the moment, like, and I think he does one of those things. So can I look up what other things might be in here?

Speaker 2 (00:48:03):

Absolutely. whatever sources you have in terms of back pain comfort comfortableness I’ll check the the doctor’s schedule and schedule to come in. Soon. We should make the, as many appointments as we can. And if we can increase your visit time with her to check in,

Speaker 3 (00:48:27):

Oh, that would be good. I, I was supposed to be here this morning to do a bath, but she doesn’t feel up to any of that. So I thought maybe I could just wash your face and hands and her paraniem and then underarms and stuff. And then can I come back later today and see her too then when you’re here? Maybe. Yeah,

Speaker 2 (00:48:47):

Absolutely.

Speaker 3 (00:48:48):

Okay.

Speaker 2 (00:48:49):

She might need some assistance. Who can we call in the community to help notice you have a ride to come here or for,

Speaker 3 (00:48:58):

I think I, I think I was thinking that maybe you could go to her home because I don’t think she can get out of the

Speaker 2 (00:49:04):

Oh, right. That’s sorry. I forgot. Absolutely. I will be there. Yeah. Give me a couple hours. Can you meet me there then? Yep.

Speaker 3 (00:49:18):

So

Speaker 2 (00:49:20):

She’s thinking what, what pain

Speaker 3 (00:49:22):

Is some Tylenol? That’s all she has here at the house, I think. Okay.

Speaker 2 (00:49:28):

Maybe I can speak to a nurse practitioner to see whether we can offer something.

Speaker 3 (00:49:33):

Yeah. And I mean, it could be that, that she’s just pulled a muscle in. It could be, you know, like that this is going to pass, but, but it’s just, she’s looking really different. There’s something that’s just doesn’t seem right today.

Speaker 2 (00:49:48):

Absolutely. And yeah, so it should be number one on my lists we’re following up and, and looking into that.

Speaker 3 (00:49:57):

Okay. Thank you. So Gloria also known as jockey, also not being the patient. Can you just reflect on how that was to get that information in the report? Like, was that helpful?

Speaker 2 (00:50:13):

I think it’s helpful, you know I think it was pretty you had all the bases covered, you know, you, you know, what the symptom was, what it might be, what she’s doing. When is the worst pain, I think you had it all covered. The more information, definitely the better for the nurse, or sort of make a decision as to what to do before seeing the patient.

Speaker 3 (00:50:45):

Well, you know, I, I often have I am shocked that we have nurses that don’t even ask those questions now for a nurse to ask those questions, the nurse might go into more depth and the nurse might do a physical examination. I mean, you can even, you could even lift up, ask, ask Jackie, if you can look at her back and maybe there’s a big bruise there and maybe Jackie fell and she doesn’t even remember it. Or maybe you look at her back and there’s a great big lump there. Like so eyeballing, it is a good thing, but what’s amazing to me is how many nurses they provide the care and they do the medications that the doctor says, but they don’t ask the questions. And so not only does this help you be listened to, but it also sets a standard. So the nurse is also gonna fall follow through and do a better examination.

Speaker 3 (00:51:43):

So over the years when we’ve done this as a skit, if I had come to Jackie and said, or come to Gloria, the nurse and said, oh, I just saw Jackie. And, you know, she’s really crappy today. And she doesn’t want to have her bath. And she’s, she tried to hit me when I tried to get her out of bed. And can you come and see her? Yeah. You know, Gloria, the nurse may say yeah, she might say, y’all come tomorrow. Or she might say, oh, well just give her a half an hour. And she’ll, you know, she’ll probably, you know, go for about that or whatever. But if I give you all that information, it really helps make sure that Jackie here’s what you’re saying. And then the physician also hears, or the nurse practitioner hears. So just a, really, a really good thing to remember in terms of communication. So any comments there, I would, I would love to have your, your thoughts Aggie and Sonia and Gail and flora and Shannon. If, if any of you want to comment like maybe maybe you want to say, oh, that’s silly ness. Like that’s too many questions are people. Wouldn’t like all those questions. Hi, Sonia, you’ve turned your camera on. Do you want to say something?

Speaker 4 (00:53:17):

Yeah. you know, it is, but help the, before Christmas, can you

Speaker 2 (00:53:27):

Speak up, Tanya?

Speaker 4 (00:53:33):

Sorry, I didn’t have my mic. You’ve seen those questions that sure. Helped a lot when, just before Christmas, when I had to talk to the doctors or the ER, people, when I had to bring someone in and doing that was my brother too. Like I had just recently used all those questions and, and the nurses that were looking after him, they just asked him, are you okay? And he’d say, yeah. And then they would leave, but then he wasn’t doing okay. So when I brought him in, he would now he’s at the point where he, he’s not spending to get better because he’s pancreas is just too far gone. So we’re in the process of trying to get him somewhere where he can stay because my mom’s 73 and she can’t the basket him because she hardly remembers herself. So it makes it kind of hard asking all those questions, like when he was my mom called me to go and check on him.

Speaker 4 (00:55:02):

So I went up and I was asking him all those questions. And it got, and I told him, I said, okay, we’re going to have to go down. And then when we went down to the hospital, they were asking him if he was okay and that’s all the nurses in the ER, asked him. And he said, yeah. So they were gonna send him home. And I got mad. And I said, no. And then, so I had to tell them what he was telling me, because he didn’t want to give his information to these ladies that he didn’t know. And he’s the, what did you call the alcohol dementia? So he’s got bad, really bad, so he can hardly remember anybody, but he’ll he remember just me, I’d have all of our siblings. So we had to, I had to step, step in and pack for him. Yeah.

Speaker 2 (00:56:13):

Excellent example, Jackie. Yeah, it’s very much like my mother, like English, wasn’t her first language and not being there. But having the program, support worker accompany them when they can and to speak on their behalf and the community and the relationships that you’ve been built with all the care staff for me, I was very lucky that way, Paul, you know, ER, and having the, the tapping the language and the assertiveness to get answers, you know? So I have spoken to emergency doctors and, you know, cause I know what my mother’s going through. So I’m, you know, advocate from afar.

Speaker 3 (00:57:06):

Do you know, years ago? Somebody called me late at night and I didn’t know the person very well. So I, I figured they needed something. So I said, what’s up? And she said, well, my mom’s in long-term care. And she was in excruciating pain and, and the nurses say that they’ve given her everything that they can give her. And I said, well, let me give you some questions and go and sit at your mom’s bed and think about what her answers are. Your answers might be to these questions. So I gave her the same question. So PQRST UVW and then I said, and write the answers really clearly on a piece of paper. And I always say that because my handwriting’s so bad. So so I said, write the answers out, like just print them clearly on a piece of paper, it doesn’t have to be fancy.

Speaker 3 (00:57:52):

Just print them on a piece of paper, take them to the nurse and say to the nurse, do you want to see, this is what I see. When I look at my mom, do you want to call the doctor? Or do you want me to? And the nurse dialed the doctor’s number and handed the, the daughter, the phone and the daughter proceeded to give that same report, just like I gave about Jackie. And the doctor said, oh, I’m sorry. I didn’t know your mom was in so much pain. Now. It’s possible that the doctor had heard or had been told, but hadn’t heard. And but whatever he said, please put the nurse back on and I’ll change the orders. And the, so the nurse got back on the phone, the doctor changed the orders. So it’s so important that we find the words to make ourselves, to make the concerns heard.

Speaker 3 (00:58:46):

The tools are one way to make our com to use the tools is one way we will be heard. Now there are some people that you, that you, maybe you don’t hardly even know them and you arrive in and they’re not able to respond and they’re riding in bed and they’re calling out well in your tools. There’s one called pain, a D and is for pain for people with advanced dementia, but it could also be used for somebody who’s not able to communicate and answer your questions. And on that you look at let me just see if I can just quickly share that screen again.

Speaker 3 (00:59:27):

I’m just going to go back here, here. This one. Can you see it? Okay. Yup. You can see it. Yep. So actually there’s a woman from Lillooet that still haunts me. I worked in silhouette back in the last part of the eighties or mid, mid eighties, early eighties, actually. And she was in the, in the hospital down one wing from the nurses station and she used to call out and she’d call out [inaudible]. And then I think when she got fed up with us, then she’d call out, God, God help me. God, hoping that God would do better than us nurses were doing. And she continues to haunt me to this day because I think we gave her Tylenol a few times a day. But if I was to go now and I, if I was to look at her now or think about what she looked like and think about her breathing, she had pretty, pretty, constantly labored breathing and periods of hyperventilation, maybe somewhere between one and two.

Speaker 3 (01:00:39):

So Jackie, if you just write down these numbers for me as we go, so I’m going to give her a number one for that, but it could have been almost number two for negative vocalizations. She was definitely repeated trouble calling out loud, moaning, groaning, and crying. So I’d give her a two, their facial expressions. She was definitely, her face was grimacing. She was rigid. Her body language, her fists were clenched. She had her knees pulled up. She wanted to hit you and push you away. So I’d give her a two there and I could not console her. So I’d give her inconsolability I’d give her a number two there. So Jackie, how much do all those numbers add up to 2 46. I got eight. Okay. So, so with, so with that, then I can say to the nurse or the nurse practitioner or the doctor or the family that on the pain add on the pain assessment scale, she comes out as being about an eight out of 10. Now that doesn’t mean that her pain, that she would rate her pain like Jackie did as a nine or an eight out of 10. The, but it does mean that it’s very likely that she has pain. So again, that’s another one that’s in the, no, I just want to stop sharing.

Speaker 5 (01:02:06):

Can anybody hear me out there? Can anybody hear

Speaker 3 (01:02:10):

Me?

Speaker 5 (01:02:12):

No, this is Carolyn. My computer is acting up, so that’s why I’m not on screen anymore. And I’m just following what the book and your voice right now.

Speaker 3 (01:02:22):

Okay. any comments, what comments would you like to make? Carolyn,

Speaker 5 (01:02:28):

I’m just wanting to know what page or what charts that you were showing on the screen.

Speaker 3 (01:02:35):

Okay. We’re in chapter three. Let me just

Speaker 5 (01:02:45):

Fill the chart that you were showing was that

Speaker 3 (01:02:47):

That would have been on page 55. Let’s see. Nope.

Speaker 5 (01:02:54):

Sorry. My computer’s not working so I I’m on telephone right now. Sorry about that. Go ahead.

Speaker 3 (01:02:59):

No, this one’s on 65. Sorry. It mentions it on page 55, but it’s actually on 65. Thanks so much. Oh, no, Carolyn great. So, so those are just a couple examples of, of some tools. Now in chapter three, there are some more tools. And then when you get into chapter four, there’s some pieces about explaining how medications work and principles for use of medications and principles for using the comfort basket and then and then goes into each of those common symptoms. So I hope that you can find, find your way around in that text and that it can be in that book and it can be useful for you. Do you have any other questions? I see that Sonia, someone took your book during, from your car during the evacuation. So checky Jackie, we’ll see if she can figure out if she can get you another book and workbook. But does anybody else have any other comments about about what I covered today or about what’s in the book?

Speaker 5 (01:04:21):

I just wanted to say that it’s it’s very helpful to ask as much questions as you can to figure out, you know, what’s really happening with the, the person that’s in pain or somewhat pain.

Speaker 3 (01:04:36):

Great. Carolyn, where, remind me where you’re from.

Speaker 5 (01:04:41):

I am from Bonaparte cache freak BC area.

Speaker 3 (01:04:45):

Yeah, right. Oh my goodness. So you’ve been right. That’s right. You had told us that at the beginning. So you, there’s a number of you who are from all of you today are from rural areas and a number who have been affected by fires, which definitely, if you think about the stress of that for your, for your elders and how that too might increase their pain and discomfort just with their age anxiety. Now what I like to do is then is to just have have you, when you Jackie’s going to do a poll about what’s helpful and also it’d be great to hear what you might like next month. We’re going to do course number five on the online courses. And if there’s something specific that would be helpful to you that you would like to talk about, then I can adapt that next presentation to whatever your requests are. And, and also the other thing is I’d like to know is just have any of you been able to sign into the online courses that you’re registered for? Does anybody need help on that? Sonya?

Speaker 4 (01:06:09):

I can get on sometimes and sometimes I can’t till it all depends on what day how well I can connect up with it. I’ve been just doing the work and the book, and then when I can catch in there, then I add all my answers in here.

Speaker 3 (01:06:31):

Okay. So the, the the, the person to access is Ann marie@lifeanddeathmatters.ca I can put that into the chat room here and to call her or to email her Ann marie@lifeanddeathmatters.ca. So Carolyn that’s M a N N M a R I E, and@lifeanddeathmatters.ca. And if you’ve got any questions, don’t hesitate to email her. And anybody else have any comments about accessing we’ve made some improvements on the courses. So if you’re in the middle of a course you will still be getting the, the original course. If you are starting again or starting a fresh, then you’ll get one with some of these tweaks made, which will make it just that much easier to find your way through. Okay. I just realized that we are cutting to the end of the hour, and we need to Qualia to close us with one of her beautiful blessings. And Jackie, thank you so much for your help and for the role player, the skit we did today, somehow skit sounds more like something we do around the fire and a lot more fun than role-playing, but thank you, Sonya and Shannon and Aggie and Carolyn and flora. Thank you so much for being here. Really, really it appreciate your input and your notes along the way in the chat.

Speaker 1 (01:08:22):

Thank you.

Speaker 1 (01:08:30):

My hands are up to each and every one of you. Awesome job, Jackie playing multiple worlds and it was ad-libbed. So that was even more awesome. Why would I put my hands up here? And my hands are up to all of you lady to join. Thank you, Kathy, for your guidance and all of you ladies. Good to see you all. And I’m just going to do since it’s all women here, I want to do the women’s warrior song and then I’ll sing drum. It usually my Tina whose song it is sings the first one without drum, but because we’re doing it here. I’m going to sing all first three with the drum, the fourth one, lift your right arm and be a warrior. And then turn up your mic. If you want to share your woo okay. And sing along, have you know it, and this is Martina up here from [inaudible] she it’s a woman warrior song that she shared with a lot of people and allowed us still sing it. So [inaudible]

Speaker 6 (01:10:17):

[Inaudible]

Speaker 1 (01:11:03):

Hey [inaudible] oh, Hey. Woo. Woo. Woo. Woo. Awesome. Well,

Speaker 3 (01:11:36):

Yeah.

Speaker 2 (01:11:37):

Thank you everyone for joining today. Sue, we’ll be sending out another invite to, for the next one. Do we know what that date is?

Speaker 3 (01:11:46):

Calf? Yeah, I think we do. Let me just check.

Speaker 2 (01:11:49):

You have a chance to really grab their pen and we’ll set another invite for that. And the woman with the missing workbook.

Speaker 3 (01:12:01):

Sonia, James,

Speaker 2 (01:12:04):

I will send that one out to you. Hopefully we’ll get it out this week. If not early, next

Speaker 3 (01:12:12):

October 13th,

Speaker 2 (01:12:16):

That’s not Jesus by the way.

Speaker 3 (01:12:21):

And, but you know what, I’m so excited about it. Sonia was evacuated and she had her palliative care books in her car and took them with her because they were sitting in the back of the car and the trunk, you know, with all sorts of other stuff like my trunk gets or it’s because she grabbed it all the way out because she thought it was so important to take. Well, pretend that it was, it was so important to take.

Speaker 2 (01:12:54):

Absolutely. For sure.

Speaker 3 (01:12:58):

She knows that part of my heart is still a little wet.

Speaker 1 (01:13:02):

Yeah. And then just ask creator and our ancestors to watch over each and every one of you and to help you with your squalling, your mental, emotional, physical, and spiritual health and wellbeing and watch over and protect each and every one of your family, friends, near villages and communities putting my hands up to each and every one of you.

Speaker 3 (01:13:29):

Thank you. Thank you. And may you be protected with these fires this year and always, okay. Thank you so much.

Speaker 2 (01:13:39):

Thank you. We’ll stay on the line cats.

Speaker 3 (01:13:42):

Yeah, we’ll stay on the line. And Tina, welcome to Tina. Thank you very much. Thank you, Carolyn. Okay, bye for now. Thanks flora and Aggie. And thanks Sonia.

Speaker 2 (01:14:18):

No,

Speaker 3 (01:14:22):

So Jackie, you were fabulous. Thank you very much. You did a great job. I forgot

Speaker 2 (01:14:27):

You mentioned the language bet and stuff like that. I just totally just got

Speaker 3 (01:14:31):

Oh, but I think actually it even came up later when we were talking about people not being able to communicate. So, no, I think that was great. Thank you so much.

Speaker 2 (01:14:42):

You’re welcome. That was a good to get the tears out a little bit.

Speaker 3 (01:14:49):

Do you what’s, what’s your belief about tears and the healing power of Tyrus?

Speaker 2 (01:14:55):

I think that’s like a faucet, you know, if you got a little bit out of the time before you explode. Yeah, I think you know, I think gears are helpful. Absolutely. I think I have tears almost every day. I don’t know whether it’s stress or, you know, I think it’s a good thing.

Speaker 3 (01:15:19):

Good. Because I do too. Yeah. Okay. So thank you. We will see you. Please let Nicole and, or sorry, first of all, back up, how do you think that it went, do you think it was useful?

Speaker 2 (01:15:34):

I think it was useful. I really loved the HCA group and the, you know, the personal support workers. I think they’re just so they’re very helpful and they they’re so kind, you know, and they really have a very giving spirit and I just love their energy. I know they don’t talk very much and that’s, you know, they’re very community-based and, and what have you and I, and I appreciate that tonight. I love their energy, you know, even though may not be

Speaker 3 (01:16:14):

The salt of the earth. Good people.

Speaker 2 (01:16:18):

I have a funny story. I’ll share with you. We had an HCA conference 2018 and anyways, so we have an awards night and we had a Greek themed dinner. So it was a sort of very gala gala ish. And so they had, you know, shifting kebabs and what have you, they had falafel balls. And so one of the women came up to me after, you know, when she’s running out into the washroom. Woo. Tell you, those were around a spicy meatballs. Oh no, they were falafel balls, falafel. What’s that life, she, they were meat come from a totally remote. And so when they come to, to the city, to these hotels, they often stay in their rooms because they don’t venture out. Right. So they’re very remote in their thinking. And so there’s a lot of fear and humanness, I’m very timid. So for the next one, we’re going to have like little gathering as they come in to help with the mingle or game.

Speaker 3 (01:17:42):

Let me know when you let me know when you have it in case I can kind of be part of the

Speaker 2 (01:17:48):

Oh yeah, for sure. Great work. I thought it was really well done and I enjoyed playing the part. So thank you for making me be the nurse.

Speaker 3 (01:18:00):

Well, thanks. So all the best and we’ll be in touch. Okay.

Speaker 2 (01:18:03):

Yeah, absolutely. Okay. Take care. Thanks so much, Jackie. Bye.

Caring for Self and Caring for the Team

With Elizabeth Causton

May 19, 2021

Maximizing the Benefits and Addressing the Challenges of  Working in Small Community

April 28 2021

 

Challenges of Working and Living in Small Communities

April 14 2021

 

Preparing for the Final Journey

March 3, 2021

March 30, 2021

March 30, 2021

Sudden Death: Supporting the Family, Community and Caregivers

Explore the unique challenges of sudden death for the family, community and caregivers in this webinar series. Learn ways to respond and support family and community in the moments and months following death,

Traditional Cultural Pathways of Healthy Healing

with Darien Thira, January 14, 2021

The Trauma Braid: A Three Step Approach to Support Family and Community Wellness

December 9

 

 

The First Moments After Sudden Death: First Response and Critical Incident Checklist

Using the Wellness Wheel to Learn About the End-of-Life Journey

Kitchen Table Chat Oct 21

Recording: Webinar 1, October 21