FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

Are you feeling overwhelmed with the responsibility of making medical decisions for a loved one with dementia? This episode sheds light on this challenging aspect of caregiving, offering insights and guidance to navigate these waters with confidence.

As an Emergency Room physician, Dr. Lamb witnesses firsthand the overwhelm and stress that comes with being thrust into a sudden need to make medical decisions for someone you care about.

Recognizing the unique challenges that come with decisions in people living with dementia, Dr. Lamb felt compelled to extend her expertise beyond the walls of the hospital.

To bridge the gap Dr. Lamb works online to empower medical decision makers with the knowledge and tools they need to make informed choices.

Through her free audio training, blog, and her comprehensive online program “Make Your Plan with Dr. Lamb,” she aims to alleviate the stress and uncertainty that comes with decision makers’ desire to choose medical care that is both what the person living with dementia would want and is the best option for them.

How To Confidently Make Medical Decisions For A Person With Dementia

0:07:07 Understanding capacity vs. competency in medical decision-making
0:12:26 Understanding the Medical Risks of Dementia
0:13:40 Frustrations with Doctors not Recognizing Lack of Capacity
0:18:15 Importance of Choosing the Right Doctor for Dementia Care
0:23:37 Medical Decision-Making and Surrogate Responsibilities
0:31:41 The Misconceptions of DNR and Active Dying
0:40:32 Course Overview: Flexibility and Reference Value
0:43:01 Accessing the Course and Limited-Time Discount Offer

Understanding Capacity vs. Competency

The distinction between capacity and competency is crucial. Competency is a legal determination, while capacity relates to the ability to understand and make informed decisions. This episode emphasizes the importance of recognizing when a loved one can no longer make decisions and how to step in effectively.

Documenting Wishes: A Proactive Approach

Planning ahead can significantly reduce stress for both the caregiver and the loved one. Legal documents like medical power of attorney and living wills are starting points, but understanding the deeper values and wishes of your loved one is key. Engaging in conversations about quality of life preferences provides clarity for future decisions.

Advocating for Your Loved One

Navigating the healthcare system can be daunting. The episode discusses strategies for advocating within a system that may not always recognize the lack of capacity in patients with dementia. Documenting observations and communicating effectively with healthcare providers ensures your loved one's needs are met.

The Role of PULSE Forms

PULSE (Physician Orders for Life-Sustaining Treatment) forms offer a more detailed approach to specifying care preferences, especially in emergency situations. Unlike DNR (Do Not Resuscitate) orders, PULSE forms cover a broader range of medical interventions, aligning treatment with the patient's end-of-life wishes.

Creating a Medical Decision Plan

The podcast introduces a comprehensive approach to medical decision-making, encouraging caregivers to think critically about potential medical scenarios and decide in advance how to handle them. This process not only prepares caregivers for future decisions but also ensures that actions taken are in line with their loved one's values and preferences.

Final Thoughts

Making medical decisions for someone with dementia is a profound responsibility. This episode offers valuable resources and thoughtful strategies to empower caregivers.
By understanding the nuances of capacity, documenting wishes, and planning ahead, caregivers can navigate this journey with confidence and compassion.

Remember, you're not alone in this journey. Resources and communities are available to support you every step of the way.

Receive Brittany Lamb's weekly emails, and visit blambmd.com for full length videos and resources.

Learn more and enroll in Make Your Plan with Dr. Lamb - An Online Self Paced Comprehensive Program to Create a Medical Decision Plan with an analysis of the person living with dementia’s medical history from Dr. Lamb: https://blambmd.com/plan/ Add additional family members for $97 each. Use code "Lizette" to take $100 off.

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Transcript

A Delightful Conversation with Dr. Brittany Lamb

[0:00] I just finished a wonderful episode with Dr.

Brittany Lamb, who is such a delight to have a conversation with.

And I will admit, as a qualified healthcare professional, there was so much that I learned from Brittany related to making decisions for and with someone who is not able to make these decisions for themselves anymore.

I invite you to listen to this episode and truly.

Take Advantage of Brittany's Offer to Improve Care

[0:39] Consider Brittany's offer at the end of the program to use the coupon that she is giving the listeners of this program so that you can actually get this done for yourself.

Because I know for me, there was a lot that I learned from her that I did not consider before, and I will be getting this program and I will be doing it with me for my parents so that I can truly help them direct their care better as they are unable to eventually make some of these decisions for themselves.

So check out today's episode and really honestly take Brittany up on on her offer for the coupon code, and go and do the work now so that we don't have to do the work later on.

And listen very much to this wonderful episode.

Introduction to Dementia Caregiving for Families

[1:38] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving, looking for an easier path?

You're in the right place. On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizeth, your host, and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program.

So buckle up while this flight takes off.

Well, welcome back to today's episode of Dementia Caregiving for Families.

And I'm very excited to have my very first physician on the program today.

Her name is Dr. Brittany Lame. She is up in Virginia, and we met online.

And I'd love for Brittany to tell me and to tell you guys a little bit about herself and then why she decided to come into the online space to help people make medical decisions.

[3:04] Yes. So, yeah, my name is Brittany Lamb. I'm an emergency medicine physician.

So I've been practicing since 2014.

That's when I started residency.

And I live in Northern Virginia. But basically, I saw a lot of people struggling to be an advocate for a person who is aging, who is unexpectedly not able to make their own medical decisions.

And then especially for people who are living with dementia who we know as diseases that are causing dementia progress it is expected that a person will at some point no longer be able to make their their own medical decisions and i think it's really hard to make medical decisions for somebody that you care about you want to do the right thing you don't want to do too much you don't want to do too little you want to honor them and i think that there's not enough time in the health care system to be able able to teach people what they need to know.

Our visits are so short. And I just really was inspired by seeing so many people teaching online and becoming frustrated with their job. And so coming online because of burnout in some ways.

I did get, I did actually suffer from pretty bad burnout a few years ago, right after COVID.

[4:17] I don't blame you there. Yeah. So, and that you you are you know and it's it's just a very fast-paced environment and I love to teach so that's why I came online I really feel like um there's so much that people need to know in order to make informed confident decisions for their personal living with dementia so that's why I'm here wonderful so as we were talking before we started to record um you and I briefly briefly talked about capacity versus competency.

[4:48] And even me as a healthcare provider, I'm like, what's the difference between a person who is incompetent versus a person who doesn't have the capacity?

Will you explain that to us? Yeah, absolutely. So I'm not an attorney, but I'm a a physician.

And so typically the term competency is more of a legal term.

And so in this setting of when someone needs a guardian or conservator, because there hasn't been someone named, maybe they're not making decisions that are safe or appropriate and someone really needs to step in and take over, they can be declared legally incompetent, which means that a person has lost permanently lost their decision-making capacity so basically the terms kind of mean the same thing it's can you understand the choices that you are making.

[5:43] You can weigh out the risk and benefits of the different options and then be able to explain why you're making the choice that you're making and how it could affect you going forward.

So people have to have capacity to make their own medical decisions.

They have to have capacity to be able to sign legal documents like your advanced directive, living will or five wishes. People have have to have capacity.

So we, and the thing is medical professionals, we assess capacity kind of in an informal way.

So it's not, there is in the emergency department, I don't pull out a piece of paper and go through like a protocol for assessing someone's ability to make decisions.

And sometimes it's, you know, do you know where you are? Do you know why you're here?

And so it can be, it can be hard for people who are speaking on behalf of someone else to convey convey that that person doesn't have the ability to make decisions when they can, they can still have a normal, seemingly normal conversation.

So, but capacity fluctuates. And so it's something where you can have the ability to make decisions at one time of day.

And like I was saying to you, it's like people who were earlier on in the disease oftentimes do better in the mornings and then their, their symptoms of dementia get worse as the day goes on.

And at the end of of the day, they might not be able to make their own medical decisions or decisions.

Understanding capacity vs. competency in medical decision-making

[7:07] And then the other important thing about capacity is that you can have capacity to choose what you want to eat or what you want to wear or if you want to go outside or not, but you might not have the capacity to make medical decisions.

And I can talk a little bit if you're interested about the actual process that we need to be able to do to have capacity to make medical decisions.

I think that would be very helpful for people to understand because I know a lot of family members in my years of working with people that believe that the person has the ability to make that decision when it's obvious that they cannot even make a simple choice between wearing a red shirt or a blue shirt.

And so it's very, it's, I understand as a family member, you want to give the person you love the ability and the autonomy to make those decisions.

And certainly do it for as long as they're able. But there is a tipping point when a person should not be making those decisions.

And I think it's helpful for other people to understand how to look at it so that they can be better prepared to realize whether somebody has the ability to make those decisions.

Yeah, it's something that I see very commonly in the emergency department.

I think innately, we don't want to have to make medical decisions for for somebody else.

We want people to make their own choices because we don't want to do the wrong thing.

[8:36] And so I think that's part of it. And you also, a lot of times you have people who are speaking for their parent and your parent was the person who helped you make decisions.

And now you're making decisions for your parent. It can feel very unnatural.

[8:48] Same thing with spouses, you know, so, but when, when we are, when we make medical decisions, we have to first understand the actual situation that we're in from a medical perspective.

So what's actually happening to us, right?

Then we have to understand what each of the treatment options are available to us to deal with whatever situation we're in.

We have to be able to listen to and understand the risks and the benefits, the pros and the cons of each of those options.

Then we have to make a choice based on what is best for us and then be able to explain why we are making that choice. It is not an easy thing to do. It's very complicated.

Exactly. And you have to be able to see how that how those choices would impact you.

And for a person who who has very little short term memory, they're they're not going to be able to be able to predict out what is likely to happen to them in a lot of instances.

So, I think people need permission in some ways to go through this process and think about this. Can my person actually do these things?

If your person cannot do these things, then you are making their medical decisions or whoever has been named.

So, yeah, it's important to realize and recognize.

[10:06] So how would you advise a family member who is now listening and comes to the realization that, oh, my mom really should not be making those decisions for herself?

How would you advise them to start? What would you recommend that they start to think about doing?

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Yeah, so I have several resources on this.

I mean, I recently put together a training for how to avoid the top three mistakes I see decision makers falling into.

And I also have an audio training that kind of walks people through the steps of being someone's medical decision maker.

But I think that when you realize that you're in this role, you know, gather any information that is going to help you be able to speak on behalf of the person.

So do you have documents like a living will, five wishes? Do you have a medical power of attorney form?

I think it's really important that you start looking, trying to figure out what your person's goals of care would be.

And this is the topic that I could talk about for a long time.

Like I could have a conversation with you about goals of care all day long.

It's a little bit complicated. There's three different goals of care.

And it's basically what it comes down to is basically what a person's value is of quality of life. quality of life versus length of life and so thinking about starting to think about that the other thing is actually taking inventory into what.

Understanding the Medical Risks of Dementia

[12:26] What medical issues this person has, because people who are living with dementia are at risk of every other medical problem, just like anybody else.

And a lot of times, you know, we're people who are aging, who are being diagnosed with dementia and even early onset, we're all aging, every single one of us, we're all aging.

So, you know, understanding what your person is at risk for because they're aging.

I think taking inventory on those things can be, That's kind of where I tell people to start.

And then I advocate that people make decision plans.

So actually looking at what the person is most at risk for from a medical standpoint, using their goals of care to know what's OK and what's not OK and what's OK now.

But but what might what what might we need to adjust in the future if their if their quality of life is important to them and they're having worse quality of life.

A lot of people want less aggressive medical care as their quality of life gets worse to them.

So that's like a very high level overview. I could talk about all those things a lot. Oh, I'm sure.

I love this. It's fascinating.

So I find it interesting.

Frustrations with Doctors not Recognizing Lack of Capacity

[13:40] I'm not one of those shy people. So when I go with my mom and dad to the doctor, I can be a little bit of an advocate for my parents.

But it's been very interesting because sometimes the physicians don't recognize that the person doesn't have capacity.

100%. And that has been very frustrating for me because I know that my mom doesn't have the capacity to make certain decisions.

And then her doctor tells me she does. And I'm like, you don't.

[14:16] Talk to her more than a couple of minutes and you're asking her the same questions that you've asked her every single time she's come in.

And you don't have those conversations sitting in the living room where she's like, I don't want to keep living like this.

[14:34] So it's, what would you say to families who do recognize perhaps that their person has less capacity and then runs into a a medical professional on the other end that doesn't? How do we advocate then?

[14:49] Yeah, yeah, it's a really good, it's so common.

My mother-in-law ran into this issue with trying to get her mother diagnosed.

She wound up being diagnosed with vascular dementia, but the diagnosis was delayed because she couldn't get in with the doctor, like the doctor didn't trust her and didn't believe her.

And so it's frustrating.

I think one is being aware that this is possible to happen. It's not uncommon.

It happens. And it's because the person doesn't have the same level of understanding of who your person is at their root, you know, what's normal for them and what's not.

And so I would say that if you are, if you know, you have a doctor's appointment upcoming with your person, I would start to actually maybe document things that, that, that support your argument that your person really doesn't have capacity.

And so, and I would try to reach out to the office staff staff before the visit so that you can, because here's the thing, everything is so rushed and fast paced, right?

And what you want to do is you want to give that person as many opportunities to as many like brain tipping points or trying to get them to realize that there's an issue here.

And so if you communicate with the office staff and you're like, I wrote this letter, I want you to read it before this appointment.

Then if you get there and they didn't read it, you have a copy of it and you say you probably should read this before you have the doctor read this before they come into the room really quick don't write like a 10-page letter.

[16:15] Bullet point out what you're concerned about and what you've noticed and remind them that, you know, they can have a normal conversation.

They, they still have X, Y, and Z abilities, but these things they do not have.

And these are the things I'm having to do for them on a day to day.

So there's an issue. I think if they won't listen to you and you can't, and you can't, you don't feel supported.

I, I feel like another doctor, another office, you know, Finding another place that you can go, either through a local support group, the Area Agency on Aging, somebody else that you know who's been in this situation, you have to advocate and step up because the healthcare system is so protocolized and it's so time sensitive.

Everything is so rushed and hurried.

[17:03] That's what I would say to start. I 100% agree with you.

And I love doctors dearly, but I've come to the realization like your primary care physician, they're in a very untenable position to be very honest, you know?

The expectations that they have are unrealistic to manage all of these different people in all their different conditions.

And truly, they function more like a clearinghouse.

You go to the cardiologist, you go to the podiatrist, you go see pulmonology, and they're the catch-all for a lot of the more common types of conditions.

[17:42] But when you're dealing with dementia, and you yourself know because I know you specialize specialize in it, there's so many different types of dementia.

And a primary care physician is not equipped to actually make the diagnosis.

[17:56] A proper diagnosis of dementia with a person.

Yeah, it's going to be pretty rare. I think there are probably some primary docs that are interested and maybe they have had family members or they've gone and done extra training.

And so they do feel more comfortable, but it's just, it's such a, it's becoming more and more common.

Importance of Choosing the Right Doctor for Dementia Care

[18:15] I think things will change as we, as we graduate younger doctors, but yeah, primary care is really, really tough to operate inside.

And so I think geriatricians are, we need more geriatricians, but I think that that's something to consider when you're looking for a doctor and maybe an internal medicine doctor and, and, and, and if the finances allow, um, looking for a primary care who does just dementia, bunch of like direct pay, the direct pay or concierge kind of thing, if, you know, funds allow.

But I think that looking for doctors who take care of a lot of people who are aging, who understand that they're like farming you out to these other specialists.

And it's incredibly important for one person to take ownership and look at the big picture.

And that's what I really teach my clients to do because it's like another, it's basically like informing, teaching them them things, informing them so that when they're in with the primary, they're in with specialists, they know what to ask and what to say and how to advocate. So, yeah.

[19:19] I love that you talk about a geriatrician, gerontologist, but there aren't enough of them out there.

And the concierge doctors, I think they're very valuable for the people who can do do that but i also understand it's not accessible to every person yeah as a as like i'm a daughter of two parents who have cognitive impairment if you were to meet me where would you tell me to start.

[19:54] I think I would ask you, well, I would ask you a bunch of questions.

So I would want to know, you know, are you living with them?

And what's the situation?

What are you struggling with? What's the most, what's the biggest frustration in your day?

Because I usually tell people to tackle the thing that's causing them the most frustration and stress.

But when it comes to navigating medical decision making for someone else, you know, I think that it's important to have conversations.

Conversations, if somebody has mild cognitive impairment, it is incredibly important to figure out what their values are of quality of life.

And so do they care about quality of life or do they care about length of life?

And if they care about quality of life, what exactly does that mean to them as a person?

And one thing that you can do for a parent, you know, or a spouse who is earlier on is just talk with them about what do they do from when they wake up in the morning to the end end of the day? What is their perfect day?

What is the day that would make them happy and feel like, you know, feel joy?

[20:56] And then when they start telling you, start asking them why.

Why do you, why do you wake up at eight o'clock? You know, instead of just like jotting it all down.

And I think also remembering that the root of all medical decision-making comes back to what a person values when it comes to quality of life.

So if you only do one thing, that's the the thing to do and to really know to really know that about that person um that's what I would say but I love the why decision I really like that so my mom and dad have a very structured and routinized day, Like I can tell you exactly what they do when they do it. It's very structured, but I don't know the answer to the why.

[21:43] It might, it might just help you understand more about them and like what makes them tick.

And so when you ask that, things come up.

What kind of responses do people give you about the why?

Well, I mean, it's not this, and this is not something, this is what I tell people to do, but I don't do this with my clients because I'm still, so I practice, I still practice full time.

So I I have an online course that walks people through these things I tell people to do these exercises so I don't actually get to I don't actually get to hear but you know I've asked family members these things you know because then it's if you have to take over for them you know like well why do you like scalding hot showers because I don't like being cold it makes me feel miserable being cold or you know I want to stick my face in the sun in the in the beginning of the the day because it gives me energy, you know, and it's these things that then a person can't always verbalize to us and explain to us when they lose the ability to do that.

And so it's like, it can really, really help you care for a person on a day to day when you, when you do those things.

But I also should say that if people's person has lost the ability to have these types of conversations, you still have to determine what quality of life means to them. You have to do that work on their behalf.

And so it's, that's a little bit more challenging.

[23:02] But you have to do it. You have to, you have to sit down and think about what living actually means to the person.

Because if you don't do that, as people progress and live with illnesses, we get used to the way that they are.

We get used to their new normal. And we sometimes forget to look at the big picture and realize, oh, my person actually is living in a way that they may not be okay with. And if that becomes the case, then you are probably going to pick much different medical care for them.

Yeah, for sure. Yeah. So tell us a little bit more about your...

Medical Decision-Making and Surrogate Responsibilities

[23:37] The process of medical decision-making, like a surrogate person making medical decisions.

Somebody like me for my mom. Like, I pretty much know my mom really well.

And I mean, we have the healthcare power of attorney, we have all the papers and so on.

But I also know my mom, she was 42 when she had a massive aneurysm.

And she was, she fought very, very hard when she was was young to recover from it, did exceptionally well, had another stroke.

So the first one was a bleed. The second one was a clot.

So she has had both types.

Thankfully, it was in the same part of the brain. So she didn't have any other big signs and symptoms.

Looking back, I can tell it did change her ability to function.

But I know that she doesn't want to continue to live like this.

So I, you know, I very much am aware that if something happens with my mom, my decisions are to give her quality of life, not length of life.

[24:46] But, you know, I'm a fairly informed healthcare provider.

For people who are not, how would you tell them to start even been thinking through some of this stuff? Yeah.

So I recommend when I ask people to first understand what they're taking on, the responsibility that they're taking on, and know how to step up and say that they're taking on that responsibility.

That's a big thing to be able to tell medical professionals that I'm the person.

And this is why, either because I was named in a legal document, like a medical power of attorney or healthcare agent, or whatever it's called in your state, or I'm the default person and I have a legal right to make my person's medical decisions because I'm their spouse or I'm their child.

And like, these are the other people that are in the woodwork or not.

And if there are other people in the woodwork, then they all need to be on the same page, which is something that I try to do. Yeah. Challenging. Right.

[25:44] But it is gathering documents, reading them and realizing that they have tons of holes so they don't tell you how to manage stroke they don't tell you how to manage sepsis they don't tell you when to come to the hospital and when not to what medications to take what doctors to go see they leave all that out usually they just talk about end of life so that's something else to know you have to determine your person's goals of care so you've said you know your mom values quality of life but right now it's like how would she judge her quality you already kind of said this but right now how would she judge her quality of life if she would say it's really good then a lot of people would say, a lot of people would say they would like every medical treatment available.

[26:23] Right? Until it doesn't work.

If they would say their quality of life is not good, then, then you have two options. It's, it is looking at the medical issues that she is most likely to face and learning about how they're treated when someone gets sick and might need to be hospitalized.

And that's what I do inside of my course. I teach all the medical conditions that people living with dementia are at risk for because they're living with dementia.

But then the most common things that happen as people age, like stroke, atrial fibrillation, sepsis, lung failure, because of all the different reasons that the lungs fail.

And if somebody is really focused on quality of life, we have to think about the medical issues that they're at risk for.

If somebody is, is, would say that they don't have a good quality of life, but they would like to protect their quality of life.

They may be, they may be okay with having infection, infection treated aggressively.

And there may be medical things that they're okay with and not like, so say she had pneumonia and her lungs failed from sepsis. Okay.

[27:29] She may, I'm just saying she may be okay with a short term in the ICU on a ventilator because maybe she's going to recover and keep her same quality of life or something similar to it versus if she has a huge bleed in her brain and requires.

[27:45] Intubation and being in an ICU, or if her heart or lungs were the primary problem because of of underlying medical issues with those.

You know, like if somebody has COPD or congestive heart failure and they're already living on oxygen, then if that person's lungs or heart were to fail and they have decent quality of life, they may say, you know what?

And we may say this on their behalf, right? You may say, I don't think my person would actually want aggressive medical care because if they survive that, they're likely to survive with worse quality of life because they already have this medical problem.

Whereas if we're treating infection aggressively, a person's more likely, more likely to recover from an infection and get back their quality of life.

So I have a hard time when, I have a hard time when we make blanket statements about like no ICU, no intubation.

For some people, that's very reasonable. And typically that's when our goal of care is comfort and so that's there's this middle goal of care which is some but not all care.

[28:49] And it's based on the person's value of quality of life what their quality of life has been like recently and how likely they're to get back their quality of life with the different treatment versus comfort which is everything is focused on comfort so um and i can talk about that i could keep talking about this oh no i love this and i'm actually really glad you brought up the The example that you did about the pneumonia and potentially being in an ICU and maybe even being intubated for a short period of time because...

[29:21] About, so it's been probably about four years that I've been my mom and dad's medical power of attorney.

And it was only about two years ago that I actually got into their medical records because my dad got sick, right?

So for the first two years, they were just kind of floating along.

But when my dad got sick and he had COVID, went to the hospital, cuckoo for Cocoa Puffs, the whole nine yards, diagnosed with MCI afterwards, you know, fight the car, everything, right?

But I was able to, that was when I took over their medical care.

[30:00] Their doctor doesn't realize that my mom really doesn't have capacity, whereas I do.

So I'm very much involved with my mom and her decisions that she makes.

[30:14] But one of the examples, the exact example that I used with my mom, because this was kind of at the tail end of COVID around that period of time, I said to her, I said, if you could be on a ventilator for a short period of time because you had COVID and then we could take you off and then you'd be back at your previous health status, then I would like to at least have the option to make that decision.

So they went with that in-between one, where it's not blanket statement, no, and it's not throw everything in the kitchen sink at everything that's wrong, but the let me decide one.

But then recently, she actually is very adamant that she does not want to be resuscitated at all.

Yeah, and this is different. So resuscitation is different than being having a temporary admission to the ICU on a ventilator yes accepting that she she doesn't even like she doesn't if something happens she doesn't want you know them to to do life-sustaining measures at home either she just wants it you know pick me up take me to the hospital and let me let me go and so we've you know we've we've I've got both of those documents now in their house, both of them are DNR.

And that was actually a very interesting emotional.

The Misconceptions of DNR and Active Dying

[31:41] Decision for me in this regard, because they really are still very independent and not quite at that where my medical brain would say, oh, DNR is appropriate.

Do you understand what I mean? Yeah, I do. But I also think that, I do, but I also think there's a lot of misconceptions with this because the do not resuscitate form should only be used when someone is actively dying.

So they do not have a pulse and they're not breathing.

So that's very different than if someone is critically ill and they're still alive.

So they still are breathing. They still have a pulse. They still have a blood pressure and they're having whatever medical problem is going on.

The DNR is not applicable in that situation.

It's only applicable when you don't have a pulse and you're not breathing.

And there are a lot of times where medical professionals will look at someone who has a DNR and over-interpret it and say, okay, well, they have a DNR, so they're not going to go on a ventilator or they're not going to go to the ICU. And that's actually not true.

[32:50] Interesting. So you need a PULSE form, a PULSE form if your state has it.

That will actually identify goals of care much better than a do not resuscitate form. A do not resuscitate form is not enough.

That's why I do medical decision planning because it literally only covers death.

I love this conversation. Even I'm learning more.

I don't know that South Carolina has a PULSE form.

You know, I'd have to look it up because I feel like I had a client recently that told me that they had, I think there might be programs in the state, but not, there may not be, it might not be in widespread use.

So we'll have to, we'll have to investigate that.

You can still look at the national POLST form.

So if you go to, I think it's POLST, P-O-L-S-T dot org, you can read the national form. And then I tell people to do this when I teach them inside of my course, because it's like you're going to have to make these decisions.

So you might as well understand like some of how you could document this or speak to a medical professional about it.

[33:55] So, yeah, but that but it talks about CPR preference and then it talks about goals of care.

So do we want every medical intervention available until it fails?

Do we want some things but not all things and we'd prefer not to go to the ICU or do we want comfort focused care I don't want to go to the hospital unless my treat my comfort needs can't be met, And then that form can also designate if someone would want a feeding tube.

And you can also put whatever else on it you want. There's like an other section.

But it's a medical order form. It's signed by a medical professional and the decision maker if a person's lost capacity or the person themselves.

[34:36] It's just like a do not resuscitate. And it's also followed by medics.

So paramedics would follow it and honor it.

And then people in the ER. You know, it's much better for me to receive a document like that than it is to receive a DNR, because the DNR can't do anything with unless someone's actively dying.

And the health care power of attorney is also limiting, you know, to a large extent.

So the Pulse sounds like it's a much broader document for a person to understand how to direct the care for someone else.

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Yeah, it definitely it definitely helps define a patient's goals of care, which is so important because it's a foundation of all medical decisions, because if I understand what your goal, your underlying goal is, then I can tell you what all the options are for treatment within that goal of care.

You know, and so, but I also want to tell, I also want to stress that it's still not a plan because it doesn't tell you if it's sepsis, if it's lung failure because the brain's failed or if it's lung failure because the heart's failed what to do.

[36:37] So and and that's why I teach this for people, I think, to get the most benefit out of what I do.

It's like they think that their person values quality of life and they think that at some point their person is not going to want all care.

And then they also want to know when to focus on comfort.

Like those are the people I can help most. If people are you really develop a comprehensive plan, a medical plan for people. Yeah. So it's it.

I don't I give information. so I try I mean I'm not I try to do everybody well and I try to be as unbiased as possible but basically it's like these are the conditions that you really need to understand when you're making medical decisions for someone who is aging and specifically living with dementia and here are the treatment options full treatment some things but not all things versus comfort care and these are the treatments that would fall under underneath each of these goals and it's like I present all all of the information so that the family can, the decision maker can decide what's okay and what's not okay.

And I tell people like, you're not actually, this isn't an advanced directive, right?

Like you can't create that for your person, but you can create a plan for what you're going to do on their behalf.

So that's what I teach people to do. And I, and I tell them like, when you go through my training, choose what you would do, like actually go through the mental make the decision, making a choice, right?

[38:01] It's not to be turned in anywhere. It's not set in stone. Obviously there are going to be variables, right?

And, but I teach people like, these are the questions you need to ask when your person is septic, or these are the questions you need to ask if your person's been diagnosed with cancer.

You know, it's like, how do we navigate this whole thing? So, because I, I just really feel like this is a piece of stress that people carry around.

It's like a lot of uncertainty that I just think is completely.

[38:27] I mean, you can't get rid of it all, but I just think the level of stress that people carry around is unnecessary.

Oh, I 100% agree with you. But prior to talking to you, I didn't even realize what's all included in your plan and in your program and truly how beneficial it will be for a family caregiver to sit down and do something like this.

Because, you know, what do you get told when you go to the doctor?

You need a medical power of attorney. you need a power of attorney for financial decisions, and then it's crickets.

[39:01] You know, there's really nothing else. Yeah. It's like, it's such a hole in our system.

And I think it's because, I mean, we don't have the time and we do not have the time.

And I personally, like if I was a primary care doctor, I would probably create education for each disease that I managed all the time with my patients.

And I'd be like, look, you want me to be your doctor?

I need you to sit sit down and I need you to watch these videos because then when you come to the visit with me, we're speaking the same language, right? Yes.

And so that's what I'm trying to give people. It's like, so that you can understand why we're making decisions that we're making.

And when something doesn't seem right, you're like, Oh, this is, it doesn't, I don't feel like this is right.

You know what questions to ask. And you kind of know, like what standard of care, what to expect so that you're like, this seems wildly off what I know, you know?

Um, so that that you can question because I feel like, I feel like in this day and age, the hospital is so fast paced, doctor's offices are so fast paced, you can easily fall victim to protocols, you know, instead of actually thinking about what's best for the person as an individual.

[40:09] Yeah. So it is, you know, what I do, this is like an eight week program that I put together.

I, it comes to people weekly and then they get access to it for forever.

So I, I, the, the way that I envisioned, well, the way that it works really is that you can go through the process and create an actual written plan with this like spreadsheet that I made.

Course Overview: Flexibility and Reference Value

[40:32] Yeah. And all the information, but you can also, if you're like in a situation where you're just overwhelmed, you have so much stuff going on, you can still purchase the course and then you can let it drip to you and then use it as a reference.

So you can log in and watch the video on urinary tract infection or pneumonia or whatever.

And then when you actually have the bandwidth, you can go through the process of planning.

And this year I'm doing, I'm actually, I raised the price of my course because I want to be personally involved with all my clients. I want them to be be successful.

And so I'm having people send me their person's depersonalized, organized and gathered medical history so that I can record myself analyzing it and telling them what they need to focus on planning now, what their person's most at risk for, looking at the medications, because that's a big thing.

Like that's so individualized. And then if there's like holes in what I teach that night, because I just had a client that sent me her thing and her husband has non-Hodgkin's lymphoma.

And I don't teach about non-Hodgkin's lymphoma.

I teach some general information about how to navigate a diagnosis of cancer, but like, I'm not going to, I'm not a non-Hodgkin's lymphoma expert.

So, but I can research some things for her and kind of help her, you know, navigate that.

So that's what I'm doing. I'm recording an analysis of.

[41:52] Of what I think they really need to focus on in the course and and just so you have like information you have like the course and then you have a little bit more of a high touch one-on-one touch point with you yeah so I'm for everybody this year I'm doing a one price thing it's it's six hundred and ninety seven dollars one time is ridiculous written well I just want people to have access I know I can tell your heart I can tell but you know that That is tremendous value.

I mean, people have to understand that that is like pennies on the dollar for what they're going to spend. It's 100% worth the cost of it.

Absolutely. Yeah, it is. It's worth more than that. Oh, for sure.

When people go to see attorneys and do their financial planning with a financial advisor or lawyers, you're spending thousands of dollars. But this information that I teach is not just applicable to the person you're advocating for.

It's applicable to you because I explain all the big things that people need to understand.

[42:57] But anyways, I'm really, really excited about it this year.

Accessing the Course and Limited-Time Discount Offer

[43:01] And I'm working with that. I get to work with clients individually.

And we don't have to set up a time to talk either because it's all electronic.

So they send me their information and then I record myself analyzing it.

Um i work night shifts i work full time so i i'm doing all this in between but um because eventually i will leave the emergency department um i just don't know when yeah i understand wow this has been fascinating so tell people where they can actually find this course because i i'm strongly recommending people do this and people need to do this like before they hit the crisis.

Oh, 100%. You know, they can't wait. This is one of those things you do.

[43:46] Shortly after you get a diagnosis or when you're in the smooth sailing part, as opposed to the papaya hit the fan and things are falling south and we're in the hospital.

Yeah. Yeah. I think a lot of people come to me after they've had some clients that recently came because they, their person kept going to the ER and they were wondering if this was even necessary.

[44:08] Someone else who is personally treated for cancer. And she was like, I didn't, people People were telling me, why did I do that?

And a lot of times people are second guessing or regretting their decisions.

So I would love to help people ahead of that.

But if you go to BLAMMD.com forward slash plan, that's the page with all the information on the course and the frequently asked questions and what's included in it.

And then you can sign up for it through there.

And I'm not sure when this is airing. um but i but i am doing a hundred dollars off until the 31st of january so this will be this will be a little later um then then that i it's been rough no it's okay but um but yeah if i maybe what i'll do is if people come you can tell me you can tell me that you came from lizette and i can give you a hundred dollar a little a hundred dollar refund like a little coupon or maybe we We could put a coupon code in the show note.

Yeah, I can actually. I didn't think about that. Yeah, I can figure that out. Yeah, that'll be cool.

That'll be really cool. Well, thank you so much for, you know, this is something I need to do for my mom. Like.

[45:23] More for my mom than my dad. My dad, my dad's a whole other story.

But I mean, if I do it for my mom, I automatically do it for my dad.

Both of their medical decision, you know, all of their medical stuff I know now.

But I think it would be helpful for me to do with them, even though I am a healthcare provider.

I think it would be helpful. So I want people to realize that everybody needs to do this for ourselves, especially when you're the decision maker for someone else. Yeah.

And I'm hoping that it will become more of a common thing that happens within the system.

[46:03] But I just feel like right now it's like we're too taxed. And the amount of information that I teach inside of this course would be so many doctor's visits, just them teaching you.

But it will help people become prepared for having conversations when they're in a situation, when they're in the office or the ER or the hospital. So, yeah.

Thank you for having me. I think you have a wonderful product, and I think you have a wonderful, you've identified a tremendous, like, lack, like, hole in the system.

Like, it's truly a big, a lot bigger problem than a lot of people realize.

Yeah. It's extremely apparent when you come into the ER.

You know what? I don't even think it's apparent to everybody who's a healthcare provider, Brittany. I really don't.

Yeah. A lot of people don't identify these things. They just do the rote thing.

They've been doing it for so long.

They just follow the protocol. They just, you know.

[47:04] The system takes over. And a lot of, I hate to say it, but a lot of doctors are not like you.

Yeah, I think it's, I think we're burnt out.

[47:15] And for me, you know, I saw myself that, you know, after COVID, I'm in my, I'm in my mid thirties now, but you know, after COVID, I was like, I can't do this for the rest of my life.

You know, I need to do something I feel really good about. out.

And I can tell you a lot of days I work in the nights I work in the ER, I don't feel good about what I'm doing.

And it's because I feel powerless to help people a lot of times because of the way that things are structured or just the lack of time and the lack of access to information that they have.

It's hard to point people where to go. And that's from babies all the way till end of life you know because we see everything and it's just I couldn't I've always been a pusher against the rules I've never really been a very good rule follower so I love that though but you're making you're making you're forging a path and I hope other people follow I really really do yeah me too I'm excited to take people along with me oh for sure well thank you so much for being Being here today, this was fascinating.

I cannot wait to actually go get your course and do it with my mom and dad's stuff and see exactly what we need to do. Yes, come do it with me.

It's called Make Your Plan with Dr. Lam. I don't think I said that. I love that.

But yeah, that's what it's called. So I'd love to have you inside.

[48:37] Awesome. Well, thank you, Brittany. Thank you very, very much for being here

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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