Episode Transcript
Speaker 0 00:00:00 You know, state enough how important it is to do this in a period of calm. And that might feel like, this is my calm space, I don't wanna disrupt it. I don't want to think about this. Um, but it's much easier to do this at your dining room table, or, you know, while you're in the bedroom sitting with your loved one than it is to be in an ambulance or an emergency department. And definitely we wanna prevent folks from ending up in the I C U making these really difficult decisions.
Speaker 2 00:00:37 As our parents grow older, it can be difficult to guide them through their golden years, while still respecting their autonomy and fitting it into our already complex lives. Welcome to the Parent Projects Podcast, where our guests share practical wisdom to tackle the issues that impact adult children of aging parents. I'm Tony Sis. Thanks for joining us today.
Speaker 3 00:01:02 This month we're remembering for our loved ones in Alzheimer's Awareness Month, and we're helping them recall and work their way through what is often a devastating disease, and continuing to bring awareness across the board. This week, I'm, I'm really excited to talk with you. Uh, um, if, if you can be that, but I, I really am to talk with you about the stages of the end of this disease. It's something that's really difficult to talk through. It's not something we like to do. Uh, and we brilliantly have Nicole de Apache who's gonna break down with us how death looks differently for our family members, uh, when we're dealing with dementia, Alzheimer's, and, and really these types of ends of life issues for this particular group of people. Stay tuned. You're with the Parent Projects podcast, which starts right now. Hey, for more than a hundred years now, no kidding.
Speaker 3 00:01:52 More than a hundred years now, N V N A and Hospice, which is located outside of Boston, Massachusetts. And in that greater area, has been working with families that are working through the hospice end of life, life issues and everything that works around that. It's a, it's a 5 0 1 C three nonprofit organization that's started as a, a visiting Nurses association if you're trying to work out that N V N A. Uh, and, and today they've got this holistic and this great understanding of the approaches of the stages of how this disease come at you. They've seen it, uh, from the beginning of how we responded to a flu pandemics all the way through how we're responding on the backside of this, uh, pandemic at the backside of Covid. So, uh, I'm really thrilled to have in Nicole de Apache who's gonna join us from that organization. Nicole, welcome in. She's the Director of Advanced Illness Management Programs, uh, with N V N A. Thank you for joining us, Nicole.
Speaker 0 00:02:46 Hi. Thank you for having me today.
Speaker 3 00:02:49 So one of the, and we are, we are def we are definitely excited to have you. Um, and, and it's not, I mean, it's, um, it's difficult to say that when you're talking about something as difficult, as hard as what this is, but man, in our conversations and conversations, you know, um, that we've had previous into this, you are, you are anxious to help us talk about something families are not great at talking about. It's hard for us to talk about. It's hard to wrap our arms around just in general end of life, palliative hospice, um, all those types of things. But in particular, you've got a niche to understand this. When we hit these stages inside Alzheimer's or any form of dementia, really that might set out there. And I, I think it's, it's really pretty valuable to hear from before, you know, we start jumping into all of that. Can you talk to us about how you ended up, you know, committing yourself into your time counts and treasures into working into, into this segment of the population and this problem? Yeah,
Speaker 0 00:03:53 I'd be happy to. Um, so I am a geriatric nurse practitioner as well as, um, I specialize in palliative care. And so my, um, professional life, uh, all of my nursing career, whether it was as a a registered nurse at the bedside or working in the community, has been with older adults and folks who are contending with end of life care and end of life issues. I was also a hospice nurse, um, working in patients' homes in New York City and Boston before I became a nurse practitioner. Um, and I have spent a lot of the last several years of my career, um, in a blend of clinical practice and program development, really helping, um, not just patients and families do this and have these conversations and understand this part of, um, wellness, you know, in the lifespan, but helping my fellow clinicians, whether it's other nurses or social workers, um, physical therapists, occupational therapists, helping them understand how important it is, um, to help people be well through the end of their lives, and to have conversations that are pretty hard, um, and often can elicit a lot of emotions and feelings, um, but are really important and also help us understand really the person, you know, in a holistic, very whole human way.
Speaker 0 00:05:26 And it's about more than just the medical care. And that's why I love working in palliative care is how holistic it is. Yeah. And we care about the person physically. We also care very much about the family unit, and we care about how they're doing socially, psychologically, spiritually, um, and functionally.
Speaker 3 00:05:45 Well, and you, you've used a term when we've talked before of sitting in the discomfort of the situation. And, and I really appreciate in, you know, just a moment ago, you talking about caring about the family. There's so much for both your experiences and my experiences. We've, we've processed, we've been a part of a parent projects that's advanced past that and then moved on to family afterwards where relationships had to be and then had to go on to tackle other problems again. Right? We've got other parent projects that would come together. This is, you know, this isn't something that, one thing we've noticed is this isn't something that we ever get really, really good at, just generally, unless, so this is your craft in life, right? Right. But most families might only do this once, twice, maybe four times. Maybe you and your, your, you know, you and your parent, your parents, and your, your partner's parents as well. Um, what, um, what are some of the key things that, um, that really stuck out to you that made it, that where you understood family was gonna play a role in somebody processing death in the end of life? What, what really sticks out there?
Speaker 0 00:06:54 Yeah, I mean, there's a few things. Um, one of the things is, you know, our society and culture, um, is what we, you know, coined the term death defying. So we are not a death accepting culture, and it is a taboo subject. It's pretty mysterious. It's not something that, um, most people have a lot of experience with. What does that look like? You know, we might see ideas of what it could be from TV and movies, which are pretty unrealistic, and they're not helpful in, um, helping us prepare or understand. Um, and the way that, you know, our society is structured is a lot of people, um, you know, have no experience with being at the bedside or caring for somebody. And if they do, um, you know, it's in mid or maybe later life, children, definitely, this is something we shield children from and don't allow them to participate often.
Speaker 0 00:07:49 So, you know, it remains pretty mysterious, um, right. And unless you're, uh, someone who has chosen a career path such as I have, or you've chosen to really work in, um, an end of life, uh, sort of profession, whatever that may be, it's not, it doesn't feel normal. And it's something that we don't have a lot of understanding of. And I've experienced this, you know, this evolution as a clinician, you would think that nurses and physicians, that we get this education as part of, you know, our training in an academic setting or when we're doing our clinical training and we don't. And there's a very small amount of time that's spent on end of life care or communication around end of life issues for clinicians, if any, as part of our formal education. And then when we get out and practice, it's, you know, we're very, you know, we wanna fix and we wanna treat, and we aren't comfortable with this piece, um, which is a normal and natural part of life. Um, and it's something that deserves, you know, and this isn't just my feelings. There's great thinkers, um, in the realm of hospice and palliative care, but it deserves just as much respect and reverence and attention at the end of life as we give to the beginning of life.
Speaker 3 00:09:08 A that's really, really well said. Uh, the another really big aspect that, that struck me, um, that, and I've had a lot of discussions, I think with people after, you know, after going through a project, is that hadn't experienced it yet. It wa I love to even mention it's taboo. We protect our kids from it. So maybe even beyond taboo, it's just, it's not an experience to get shared. There are some cultures that do, there are many cultures, and actually cultures I see that are doing really well with this, where grandma and grandpa will take care of grandkids and then grandkids will take care of grandma and grandpa. And because mom and dad are the way earner and they're out there and they're working from that, um, you see this in eastern block countries, you see this in South American countries. And then when mom and dad get to that older age, there's kind of this other trust because they've watched their kids like, do this before.
Speaker 3 00:09:57 So their kids are now the age earners and it's their grandkids doing it, but they've watched their kids actually successfully deal with this with their parents. And it builds this kind of different posture. And maybe that's something that we'll pick. Maybe that's one thing that we'll pick out of the, you know, the mass immigration stuff and this change that we're seeing in a demographic that is coming. Maybe there's a real silver lining in some of that, that some of that will find its way up into the American, uh, experience that we have out here. Um, I would hope that it does, I would hope that it does. Um, all that aside, one thing, um, you know, that, that, uh, I was explaining to somebody was as a parent, I have, I had those times where I read the book ahead of time and it told me, you know, what, what to expect from parenting.
Speaker 3 00:10:42 I think everybody gets 5,000 copies of these things. It was something very different for how I felt after my sixth night of sleep. Uh, and I'm facing this now. That's when I'm facing this problem. It's not on a book of a page where a conversation like comes in and you're trying to put 'em back and walk 'em through this and that. It's, I'm doing this with sleep deprivation. I'm exhausted. It has been a real grind for a period of time, maybe months, maybe years, uh, right. And I am depleted at what I'm trying to bring to the fight, my ability to cipher and bring through some of those things. Is that something you see in common for families, you know, experiencing this and, and from a practitioner side of the house?
Speaker 0 00:11:26 Yes. I think that, um, you know, there's so much to contend with, uh, when you're dealing with an illness and particularly an illness like a dementia diagnosis. Um, you know, that's what peop, I mean, it's one of the biggest fears that people have is that they're going to lose their mind. Um, and, you know, it's a scary idea and people are worried that that means that they're gonna either be a burden or they're gonna end up in a facility. Um, and it's also typically a pretty long illness trajectory, four years. And yeah, it's a, it's also, you know, it's a, an accumulation of losses. So everything doesn't happen at once. And people are very much mired in the day-to-day and just trying to get through the basics of making sure people are fed and safe, um, and looked after and relatively happy in the course of a day.
Speaker 0 00:12:28 And so the, the, there's, you know, several reasons why I think being able to have the time. It's a privilege to have the time and opportunity to try and sit and think and plan and have some of these conversations and people, you know, really just cuz they're trying to cope with day to day, it goes by the wayside. You're too tired at the end of the day, you're trying to rally other family members or a reluctant parent or a reluctant child to sit down at the table and have these conversations. And then we have, you know, our most common coping strategy with a lot of this is avoidance. Um, right. And I think death anxiety is normal and natural. Um, and the most common ways that a lot of us deal with it, unless we've really done the work of trying to be accepting of it, is to avoid it. And I think that that's an unfortunate mistake that a lot of families end up finding themselves in.
Speaker 3 00:13:28 I think you're dead on. Um, with, with that, that is, um, I think that is one of the ways that, I think one way that we can go through that I've seen these tools and resources that you've talked about here, breaking that up maybe into short sprints that you can get yourself through instead of the long haul is gonna be secret. And, you know, when we come back from this break, that's exactly what we're gonna do. Nicole and I are gonna sit down and we're gonna break up a couple of the different phases of how this might play out, um, in that end of life so that you can maybe get yourself acclimated to those key tools. Know that one thing across the board, the key to this is having those conversations earlier than later and as soon as you practically can. Uh, but we can help prepare for where it's coming from and she's got some great tools to start talking to us. And you can put into place to start capturing that information as you're having those conversations to think ahead of time. It's gonna make this a little bit easier. So stay tuned as we return back with Nicole de Apache here. As we look at how death looks different,
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Speaker 3 00:15:32 Welcome back. And this week we're looking at how does death look differently when you're looking at palliative care, end of life issues and Alzheimer's, or even really dementia in general, uh, is a part of what that journey's gonna be. We're gonna talk through some of the stages of how that might come at us and break up some techniques for that and places to collect it and how we communicate what matters to each of us as we're working through advanced directives and other things. We've got Nicole de Apache with us joining us from India a and hospice out of, uh, Boston, Massachusetts market. Again, Nicole, welcome back into the show.
Speaker 0 00:16:08 Hi.
Speaker 3 00:16:09 Hi, <laugh>. So, uh, okay, let, let, let's jump really into this. Um, I, I wanna start with, uh, a quick little level set. Can you very quickly get us related between, uh, for that family that's sitting back there, palliative care, hospice care, they're two of the most, I I think the biggest pieces that are sitting in around end of life. Is there another one? Is it them? What is, what's the nitty gritty? What do we need to know about that?
Speaker 0 00:16:35 Yeah, I think those are, you know, the two sort of biggest challenge. It is a big challenge for us to help people, um, understand what the differences are cuz they're similar. Um, and how that can be helpful. So I think, you know, the, in simplest terms, all hospices, palliative care, but not all palliative care is hospice. Um, and so palliative care is sort of a spectrum of care for people who are living with serious illness. And dementia falls on that, under that umbrella of serious illnesses. And palliative care really focuses on helping people, um, have the best quality of life possible. Making sure that symptoms related to their illness or the treatment of that illness are as managed as they can be, that patients and families have the support that they need to face the decisions that are gonna be coming their way. Um, and that they understand what their options are and what their resources are to deal with that illness.
Speaker 0 00:17:40 You know, palliative care in terms of the umbrella term is not dependent on a person's prognosis, meaning how much time they may have left to live or how they're predicted to respond to treatment. Um, and also all treatment options and, um, care options are on the table. And our, you know, possi our possibilities when palliative care support gets involved, hospice care is still, those, the essence of palliative care in terms of pain and symptom management, patient and family as a unit caregiver, support, understanding what your options are. All of that is still true and very much, um, steeped in hospice care. But hospice is really, when we know we've reached the phase of the illness that we call the terminal phase or the end stage of the illness. And in the United States, um, we have the Medicare benefit through Hospi, um, called hospice, which defines that period of time where to the best of our ability, we think the person might be in their last six months of life.
Speaker 0 00:18:45 And where we also know that the goals of medical care have shifted to comfort. So we're no longer, um, trying to pursue or seek treatments that we think might cure or fix because we know we're at a point where that's not possible. And or doing so places so much burden on the individual that it's completely out of line with what's acceptable quality of life for them. And, you know, hospice and palliative care both view death as a natural inevitable outcome for us as human beings. And so, you know, there's a lot of emphasis on preserving a person's dignity and comfort through that trajectory of that illness.
Speaker 3 00:19:31 The, um, the, the stages of that then two in, in hospice. And, and I, I think that works well. Cause how you were explaining the differences of one sits under here, but they're not both equal at all times. Kind of a lot how Alzheimer's sits within dementia maybe, but not all, all not all dementias fit within Alzheimer's. So I think in particular this audience that might be even a little easier to understand than some others, you know, dementia and Alzheimer's, dementia in general. But, um, it, it seems to be because of how that disease progresses, it leaves open so many other injury opportunities that become very fast. Um, like accelerants that come outta the blue. You know, it seems, seems like many stories that I listen to from families, they're moving in this direction and they're working on dementia and it's memory and it's all that, but then inevitably it's something else that comes from the byproduct of them not being able to see that and they don't transition well, and they have a trip and fall.
Speaker 3 00:20:28 And then that leads into some other major issue, which totally accelerates the curve. Um, which you could never project projected. You couldn't have expected to see that coming. Right. Uh, you know, or they, you know, they slipped to that point, they didn't get addressed and it's in a vehicle and then they're in a car accident or they're, you know, these other things that manically just switch it. And, and you went from, oh, we could handle this a little later to, oh my gosh, like, because we had this, we ended up over here. They went to the hospital, they dropped like 45% of what our expected curve was gonna be in the dementia symptoms. And now we've accelerated past the point of being able to have this conversation. Right? And you've made before, this is one of those diseases, this is one of those, those prognosis that are, that, I might not be using that word correctly, but, um, we all have to share that death is inevitable.
Speaker 3 00:21:19 That is the natural end state for a hundred percent of us, all of us, right? It comes to that. Right? And so, um, that is one though that our level of autonomy is absolutely we know going to be questioned. And our ability to, uh, to handle that will be in question where we're going to have to expect someone else to carry out those wishes. Whereas many others, you might get all the way to death. So all they have to do is disposition of your remains. That might be the only decision that somebody's gotta really have communicated well to. How do you break, um, how do you, so how do we break this up? Let, let's, uh, let's focus on, um, maybe on, on hospice just to kind of dial in from all of that. We know that's that last six months we're starting to work for that. This is in front of somebody, it's dementia. Uh, there's some, some way Alzheimer's or other forms of dementia that's coming at them. What, what can they expect generally, um, to think about that looks differently? Or what are those stages that someone might be working from a high level?
Speaker 0 00:22:23 Yeah, and I think, you know, when we start talking about that hospice realm where we're in those last months of life, not in the last years of life, you know, the various types of dementia progress differently and may have different manifestations or complications. But that final phase of the illness, the complications that we see are pretty similar for all forms of dementia. So by the time a person, um, is, you know, we're thinking that it, it could be time for hospice and that they would benefit from that care, um, you know, things are, are pretty advanced in terms of the cognitive losses, the functional challenges, and now really facing some of the serious complications of the dementia illness. Um, so, you know, at this point we definitely see impairments in language and communication abilities. Um, we're definitely seeing challenges around mobility. Um, a person may have lost all ability or they are at the point where they are not mobile without considerable assistance.
Speaker 0 00:23:29 You know, we're generally starting to see, um, dysphagia, which is the medical term for difficulty swallowing, which leads to other complications around, you know, nutrition and hydration. Are we seeing that they're losing weight? Are they having a hard time maintaining nutrition, uh, hydration, which is then leading to more frequency of urinary tract infections with the difficulty swallowing. Have they started to have respiratory infections or, um, something called aspiration pneumonia where they've swallowed contents that belong in the stomach, into the lung, um, and it's caused a serious pneumonia, um, because of significant debility with the loss of being able to move around and the nutritional issues. We may also also start to see breakdown of the skin, um, where they're developing pressure, um, injury to, you know, their bottom or their heels or the parts of their body that are constantly resting on surfaces in a bed or a chair.
Speaker 3 00:24:26 Um, those are like bed chores or that's those types of things, right? Yeah. Okay. Yeah,
Speaker 0 00:24:32 That's right. And so, you know, all of those, those things are in indicators that were in the really advanced stages and this person is highly susceptible to, you know, the end complications of this illness. And so people who are dying from dementia frequently die of some sort of infection. And I think what gets really challenging for the family and the, you know, person who's in the seat of making their medical decisions is they're used to checking for a urinary tract infection they've experienced before that when mom or dad gets confused, um, and has a sudden change where they're very sleepier or they don't wanna eat, or they're like wildly confused in a short period of time. They had an infection, we gave them antibiotics and it got better. Um, but you know, we see that these start to become closer together. They're less responsive to antibiotics. Um, and we know that dying of an infection is the most common complication that people with dementia die from. And those decisions around, should we keep testing for infections and should we keep using antibiotics become really tough for the family members to, to hold that becomes, you know, uh, if you haven't planned for that, it can start to feel like an overwhelming sense of burden in terms of their responsibility. The other thing, and
Speaker 3 00:25:57 When you say ahead planning for that, you mean when you say planning for that, you mean communicated what matters to them in that situation and how they, how they would expect so that you can relieve yourself of, of guilt and fear when you're acting and instead just, just note that you're pushing in. Um, that's right and that's executing what they're looking for. Okay.
Speaker 0 00:26:15 And if we're not framing the conversation of, I know that one day I'm gonna die of my dementia illness and the things that will probably be the complications, um, that I'm dealing with at the end of my life are an infection or issues around my nutrition, the family member who's put in the, the driver's seat of making those decisions in that phase feels like I'm killing my mom if I don't treat this U t I I'm contributing to, um, hastening their death. If we don't give them artificial nutrition, I don't wanna starve my loved one. Whereas we know that those are the end point complications and they're expected as the illness reaches its terminal phase. But it, it doesn't feel that way, particularly if you haven't planned for it or you haven't really been given an opportunity to talk about it and think about it.
Speaker 3 00:27:10 Is that, and is that a lot of, because our, our natural instinct is always the prolonging of life and the working towards life and, and youth and those types of things generally. And now every the natural state, it's like forgetting that the natural state is death in this particular circumstance. And so it's just hard to you see, is it hard for families to let go of the habit that they've formed? Or do you think it's more of just, uh, families that hadn't prepared for that maybe are more susceptible of having a difficult time than families that do can, can they prepare for it and that feel easier for them? They can, they can feel some reprieve for having written that down and working through it.
Speaker 0 00:27:51 Yeah, I think there's, you know, several factors that contribute to people end up being, you know, unprepared for these decisions. One is I don't think that clinicians, whether it's a physician or a nurse or um, some sort of professional caregiver, I don't think that we are direct enough or frank enough. And I don't wanna say that we're dishonest cuz that's not it. But we don't very, we don't lean into these very honest conversations about dementia ultimately being a terminal illness. I think that, and this doesn't only happen in dementia, but I think there's a lot of families who are very unprepared for the fact that this illness does reach an end stage and people die of dementia because we spend a lot of time focusing on the pneumonia or the nutrition issues or whatever other complication it was. And we don't comorbidity, we don't rewind that back and peel that back to the ultimate underlying cause.
Speaker 0 00:28:52 Here is the end stage dementia that has led to these complications. And so I think people in the moment feel very attached to trying to have some form of control. And it feels like you can maintain some control if you treat something, um, as opposed to not doing that and instead using, um, comfort medications to make sure a person is comfortable and allowing them to die from the illness naturally. I also think clinicians don't do a great job of explaining to patients and families, if we don't treat the pneumonia and with antibiotics, how are we going to take care of your mom or dad? How are we gonna take care of your loved one? So family, um, caregivers and family decision makers are left feeling like they don't have other options other than to do this thing.
Speaker 3 00:29:46 Mm-hmm. <affirmative>. The, um, okay, so you guys have a tool on here, you and I talked about a little earlier and looked through it. It's the, the dementia to dash, uh, dementia directive, right? These advanced directives for dementia, the work around that. Can I highlight it? Can you talk a little bit about that and that use of that as you're coming into these, these kind of stages? Absolutely. If your family, once you grab around that, I'm gonna, I'm gonna try to throw that up on the screen here, uh, while you're, uh, while you're talking to us about that.
Speaker 0 00:30:15 Okay. So I think that the, the planning for people who have dementia, you know, the best time to start these discussions is at the time of diagnosis. And so the earlier we start these conversations, the better off everyone is. And you know, the things that I, I counsel the patients and families who I work with is that these conversations are not easy. Um, and they typically elicit a lot of emotions and feelings, um, for people including sadness and some grief or anxiety. However, it is much less difficult to try and have these conversations when you're not in a time of crisis when there isn't a pressing decision that has to be made in a short amount of time. Um, so that you're able to really do this in manageable chunks and also have time to really with it, you know, think about what your questions are, seek more information or resources, um, and there's time and space for this to be a constructive process that develops over time as opposed to a crisis driven decision.
Speaker 0 00:31:26 Sure. And so this, this tool specifically for dementia was developed by, um, a physician with the support and input of geriatricians and palliative care specialists. Um, and it breaks down decision making that a person might face in the setting of a medical emergency or sort of end of life type decisions based on the stage of dementia illness. So it's the same set of decisions, but it's prefaced in terms of in the early phase of your dementia illness, where these are the typical challenges you're facing, what would your wishes be in terms of some of these life-sustaining medical interventions? And then it goes on into, into the middle stage and the end stage, and it provides a little, um, description of what the challenges are both cognitively and functionally in each stage. Mm-hmm. <affirmative> and then how that would guide the decisions around medical care. And what's really important is that we know that people with dementia will lose the ability to express their wishes for their care as they move through the illness.
Speaker 0 00:32:34 Right? So the earlier we're able to do this, the more of their voice and their person will, we're able to capture so that when that son or daughter, an adult child gets put in the position, or that spouse gets put in the position of having to make a hard choice for their loved one, it doesn't make it less, it doesn't make it not hard, it makes it less hard. And at least they're able to say, my loved one would or would not have wanted me to go down this path. They would want me to focus on A, not B. Um, and it, it allows for a person's values to be upheld through the duration of their life, even as they lose their capacity to express themselves.
Speaker 3 00:33:15 Well, I, I think that's I one place where that could become very important, which you and I have both talked about, you know, is our personal experiences involved, family members that had different political views, family members that had different, um, religious views. And at that moment we had to find that way in the hospice situation to stay focused against what that person's looking for and, and, and really continuing to preserve that God-given dignity for them, uh, and not detract away from that. Right? This is this a tool like this is something that can help understand them as early as possible, where they are, where that is for them, even if that's not necessarily my shared belief, knowing where they're at. Um, I think this could play, you know, that that could play a really big role. You know, especially if you're, if you're younger and, and you haven't been around, let's say your parents, their church community or where that is, or faith is a huge part of their life, how they make their decisions, where those things come.
Speaker 3 00:34:12 And that's just not a part of where you might be. Something like that might be extremely important. Or if you just, you were, were individual adults. We've been outta the house for quite a few years, generally by the time this comes around. Right. And we found a different practice or a different way in which we do that. Being able to understand those things. Um, in a disease which you've laid out pretty clearly, when it advances it, it's complicated. I mean, there are so many comorbidities that might be happening, you know, along the way I talk about not, you know, be or being in a position of fatigue. All of that is just on top of it. So this kind of gives you that, that thing to sounds like to go back to as a staple and to check yourself against.
Speaker 0 00:34:53 That's right. And the other thing is, you know, these are not meant to be one-time conversations. So these decisions, these documents, these directives should be revisited every time there's a progression of the illness. There's a complication, there's a new treatment, whatever's going on, a person is hospitalized and you know, back home, or they have a stay in short-term rehab for whatever reason. Every time there's a change in situation, it's a good time to revisit these conversations and these decisions to see if they still reflect one, where we're at with the illness. And two, what is our best understanding of our loved one's wishes, and are we still on track? Um, and I cannot, you know, state enough how important it is to do this in a period of calm. And that might feel like, this is my calm space, I don't wanna disrupt it, I don't want to think about this. Um, yeah. But it's much easier to do this at your dining room table or, you know, while you're in the bedroom sitting with your loved one than it is to be in an ambulance or an emergency department. And definitely we wanna prevent folks from ending up in the I C U making these really difficult decisions.
Speaker 3 00:36:11 Yeah. So, uh, you also shared with us, uh, what matters most or what matters to me workbook. Can we talk about that as well?
Speaker 0 00:36:20 Absolutely.
Speaker 3 00:36:25 And let's see that it is. Okay. There we are.
Speaker 0 00:36:30 And so these, um, workbooks and, you know, th this tool is also translated into multiple languages. Um, but this is, you know, appropriate for any person living with any serious illness. And so it's not broken down by stage of dementia like the other tool is. However, it's a very holistic tool. Um, it doesn't only focus on things about, you know, do I want resuscitation or not? Would I wanna use, um, life support or not? It's asking people questions about how much information about my illness do I wanna know? Where would I like to be cared for at the end of my life? Um, do I want to rely more on my medical providers to help guide decisions versus, you know, be purely autonomous. It asks things about what does a good day look like for you? What's happening on your hard days? Um, who do you want to be involved in your decision making?
Speaker 0 00:37:30 Who do you want us to contact? If there's a decision that needs to be made, what do you hope for? What are you worried about? Um, and so it's a, it's a really important tool for patients and families, for people to use to guide decisions as a family unit. Um, and to understand their loved one's values and wishes, and to know how to take care of them. And I think for a person who has dementia, having these kinds of tools, um, be used and to give people the opportunity to write down these kinds of things while they're still able is a gift. It's a gift that we give to our parents by being able to sit there with them and tolerate the conversation. And it's a gift Parents are able to give to children and just families are able to give to each other. And, you know, again, we, we provide so much reverence and time and attention on the beginning of life, and we don't help or think about or provide time as much around end of life issues. And I think about, you know, there's no, there's no class for this. So, you know, if you're gonna have a baby, you know, there's childbirth classes, there's parenting classes, there's breastfeeding classes, there's all kinds of books about what to expect and what to do. And although books exist around end of life issues, it's just not the same. And we don't provide people with a class for this. We kind, you're kinda on your own in some ways.
Speaker 3 00:39:08 Yeah, right. I mean that's, that, that's what parent projects is really here to start assembling. Paul, we, we, we saw the exact same gap. And that's one place where we honestly look to lever. Because if you've seen one project, you've seen one parent project, you've seen one parent project, everybody's just so different from that. But this is one place where we really think assistive technologies, assistive AI technologies and others can work to make those recommendations, recognize and see patterns, help us understand what could come up next in front of us or where it would lead. I I love both of these resources that you've introduced to us. Would either of these be something that are specific to a particular region of the country or an area or is this something that you'd use as a guide there, but need to have something in your local, in your local resource or, or, so these sort across the board?
Speaker 0 00:39:56 Yeah, these documents are not necessarily legally binding, but these tools are, um, available free of charge and to be used no matter where you live. Um, in the US and, you know, each state has its own laws and, um, rules and regulations around advanced directives. And they may use different terminology. So for instance, where I am in Massachusetts, you know, we have healthcare proxies where my mother lives in Colorado, it's durable power of attorney, but then it's the same function. You're naming a surrogate decision maker who would help step in to make your medical decisions if you became in incapacitated and unable to do so. Um, you know, in some states documents that are called living wills or personal directives are legally binding In some states they're not. Where I live in Massachusetts, the living will is not legally binding. Where my mom is in Colorado, at least the last time I checked it, is a legally binding document.
Speaker 0 00:40:56 Um, however, if I were in a hospital treating a person and we didn't have, you know, medical orders around what their wishes were and the best that their family had to produce was this document that we filled out a year and a half ago, um, that medical team would be happy to have that information and to incorporate it into the person's plan of care. The other thing that filling out these tools can do is help try and alleviate conflict that might arise in families, you know, between siblings, between an adult, you know, a spouse and the adult children. If somebody's remarried and has, you know, a second or third spouse and children from an a different marriage, you know, there's all kinds of reasons and opportunities why there might be more conflict around decision making. Um, and these tools can help alleviate that, if not completely prevent it.
Speaker 3 00:41:53 But one of the common things that we utilize in, in working through a parent project and when you get to the difficult conversations is, uh, I being able to understand and isolate assumptions, account for them and, and move them to the side and move to facts, right. That you can work through. And this is literally turning an assumption into fact this is them sitting down from where somebody had that you get to gather into their how it's, what I, that takeaway I take from what you have here is it's legal binding nature may vary from area to area, state to state, make sure you're working as especially if it's important to, to get that. And you wanna, you wanna get as close to that legally binding as possible just to protect the autonomy of the person. But that said, um, you know, this is a great place to start putting those pieces together. Uh, and it it's never gonna be a, a bad step, um, that, uh, to have that information put down into fact. That's, that's a fantastic way to look at it. The, uh, so it always,
Speaker 0 00:42:49 It would be this and so this and then whatever the legal documents are in your state, right?
Speaker 3 00:42:55 And, you know, one thing you, you know, maybe one of the last things that kind of broach as we talk through this is part of it, a part of an instate of one direction it can go, that gets complicated. Particularly we saw a lot of this coming outta Covid, you and I talked earlier about it, uh, is when you cross that threshold of, of the hospitals taking over and obviously we, we, we talked earlier about that is it's gotta be kind of a rigid process and how that's set up, it's gotta work for thousands if not millions of people. And so that process has, it's relatively rigid Medicaid, Medicare, social, or not social security, but Medicaid, Medicare, even hospital policies there when a family member's working off of it. Um, this, you know, another reason to have physical conversations when you're completing these. So if you're, you're doing this for yourself, but walking through and explaining what this is mm-hmm.
Speaker 3 00:43:47 <affirmative>, having those conversations with as many family members as possible, um, maybe even describing it over, over a video that you captured of yourself or if nothing else, a recording, that that really puts context. Every level of context just matters. And, and we've seen it time and time again, help families on the backside when it's time to go to execute, it provides that flavor or that color of, of the situation that needs to be done. Uh, because, you know, it's just not, it's not black and white usually when you're a a face with it, that, that assumption that says, I do not want to be resuscitated. Uh, you know, given where all of these things have been looks a little bit different when you accidentally slipped and fall, fell in the bathtub and you have some positional asphyxiation which somebody finds you and wants to deal with, you know, wants to resuscitate and work through versus the I'm laying in a bed and I don't wanna be resuscitated. I don't put on a machine and work from there. And you've gotta give that, you know, you've gotta give that opportunity to have some of these conversations where it's already, it's already difficult to have the first one for crying out loud. So. That's
Speaker 0 00:44:54 Right. I think, um, the conversation is the most important. I mean, I think the other thing people need to not do and to avoid is using all these beautiful tools, but filling them out, putting them in a folder or some beautiful binder, putting it in a drawer, um, and it never sees the light of day and your loved ones doesn't, don't know it exists. Um, and we see that happen a lot. Um, people have, you know, with their lawyer done their estate planning and they've done their, um, advanced directives and they have a beautiful binder with tabs and a table of contents. Um, well they're bound, but it lives in a drawer, in an office, in a home or, you know, some cabinet and no one knows it exists. And oftentimes people don't even remember, and not because of dementia, but they did it 10 or 15 years ago and they don't even remember exactly what they wrote down a lot had probably has probably changed since then. Um, and so, you know, that's a, that's a common pitfall of doing this is people like, wanna check the box? I did it, it's done. Um, and we don't, it doesn't drive discussion. So the discussion is the most important part of this.
Speaker 3 00:46:04 That's great. What are, um, in those discussions, any key things as you're a family member, you're sitting down, uh, with mom and dad, maybe you've got a couple of these documents. Is there a technique you could think that might be easiest or, or best to lead off with when you're introducing these, uh, and you know, everybody's open to having the conversation and you start with it that you can, you can lay out for us,
Speaker 0 00:46:30 I think, you know, some questions for, you know, families to think about is what do we understand about this illness and what don't we understand? Like, what do we know what has been explained to us by the healthcare providers? What have, what research have we done on our own and what are our outstanding questions? And, you know, really kind of formulate your A list or columns. Um, what do we know are our resources to move forward with this illness and in the care as a family? What resources, you know, what do we know we have access to and, and what would we like to have access to that we don't know about? And I think that for dementia in particular, it's a, it's a long road. There's a series of losses. So what sort of care do you need simply for caregiving and caregiver support?
Speaker 0 00:47:25 What sort of care support do you need for decision making? What care support do you need for managing the illness itself? What are your resources gonna be as you reach the mid and end stage points of the disease? What are your home care options? What are your hospice options? What are your palliative care services in your community? Do they come to your home or do you have to go to a clinic? Is it only in the hospital that you system that you use? Really exploring what your options are, um, and figuring out where the gaps are ahead of time. Finances have to come into this. So really thinking about the financial aspect of how you're gonna make medical decisions and what your options are. Um, I think that the common complications at the end stage of this illness really are around, um, loss of mobility, infections and nutritional issues.
Speaker 0 00:48:20 And, you know, there are things that we recommend and don't recommend medically to treat those complications at the end stage. And one of the things that can be really hard on families to talk about or think about is the nutritional issues. And in dementia clinically, we don't recommend things like feeding tubes, um, at the end stage of the illness. And we, they, we don't find that they help people live longer. Um, it can actually cause more complications. Um, it can cause more agitation, more skin breakdown, development of pressure wounds. Um, and it, it doesn't reduce the risk of aspiration, meaning swallowing what's meant to go into the stomach and into the lungs cuz things can back up instead of going down the wrong the wrong way. And that's a really hard one, uh, particularly if you haven't thought about it or planned for it. And most people who have dementia wouldn't choose to be kept alive that way. So it's a fine line of when are we prolonging life versus when are we prolonging death? Um, and most people would not choose to have their death prolonged
Speaker 3 00:49:27 Particularly, and let's be particularly in this disease as it's crossed,
Speaker 0 00:49:32 Particularly in this illness
Speaker 3 00:49:33 Right, as it's crossed those thresholds. That's, that's, um, if they
Speaker 0 00:49:36 Don't recognize their loved ones, if they don't recognize their surroundings, if they're not communicating anymore. Yeah. Um, if their body doesn't move and they can't control any of their functions, you know, at most people will say under those circumstances, I don't want you to try and give me as many more days as possible. I want to have as much comfort as I can.
Speaker 3 00:49:59 Yeah. And and that is a, it's a great way to think about remembering it. It's about them as a patient, giving them that that's
Speaker 0 00:50:07 Right.
Speaker 3 00:50:07 That, um, you know, holding onto that dignified experience of life that they've got, um, start to finish and, uh, and, and paying attention to that now. Well, I I really appreciate that Nicole. Um, great breakdown, great tools. Um, I, I'd love the detail you went through into that and I just can't tell you how much I appreciate you coming on with us today and talking through this stuff and sharing your time, talents, and treasures with us here at Parent Projects.
Speaker 0 00:50:35 Well, I really appreciate the time today and this is such an important conversation and it affects so many people and it's gonna affect so many more people going into the future. So I really appreciate you having me today.
Speaker 3 00:50:48 Thanks.
Speaker 2 00:50:54 Well, that's it for the team this week and thanks for joining us. If you've enjoyed the content, remember to subscribe and to share this episode on the app that you're using right now. Your reviews and your comments, they really help us expand our reach as well as our perspective. So if you have time, also drop us a note. Let us know how we're doing for tips and tools to clarify your parent project, simplify communication with your stakeholders and verify the professionals that you choose. You can find us on YouTube, follow us on Instagram and Facebook. Thanks again for trusting us. Until our next episode, behold and be Held.
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