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How to Prepare New Dementia Caregivers for the Journey Ahead

This realization can be empowering, helping caregivers to embrace their new responsibilities with a positive mindset.

0:00:00 Introduction

0:02:09 The Importance of Identifying as a Dementia Caregiver

0:07:28 The Overwhelm and Lack of Help for New Caregivers

0:10:24 The Analogy of Dementia Caregiving as a Flight

0:14:30 The Importance of a Navigation System in Dementia Caregiving

0:18:00 Two Types of Caregivers: Prepared vs Overwhelmed

The Dementia Caregiving Journey: An Overview

The journey of dementia caregiving is complex and multifaceted. It involves understanding the diagnosis, recognizing the gradual changes, and adapting to the evolving needs of the loved one. This journey is often unpredictable, but approaching it with knowledge and preparation can make a significant difference.

The Analogy of Flight in Dementia Care

Dementia caregiving can be likened to a flight journey, where the caregiver and the person with dementia are co-pilots. Initially, the person with dementia may still be capable of making decisions, but as the condition progresses, the caregiver's role becomes more prominent. This analogy helps in visualizing the gradual shift in responsibilities.

Navigating Early Stages of Dementia

In the early stages, dementia may present subtle signs. Caregivers should be vigilant and proactive in seeking help and information. Understanding the nuances of the condition at this stage can prepare caregivers for the journey ahead.

The Shift in Caregiving Dynamics

As dementia progresses, the dynamics between the caregiver and the person with dementia change significantly. The caregiver gradually takes on more responsibilities, akin to a pilot taking control of the flight. Recognizing and preparing for this shift is crucial for effective caregiving.

The Importance of a Support System

No caregiver should navigate this journey alone. Building a support system, including healthcare professionals, family, friends, and support groups, is essential. These resources provide much-needed guidance, support, and respite.

The Two Types of Caregivers: Prepared vs. Overwhelmed

Caregivers often fall into two categories: those who are prepared and those who are overwhelmed. Preparation involves seeking information, understanding the condition, and planning for the future. This approach can lead to a more manageable and fulfilling caregiving experience.

Learning and Adapting to Dementia Care

Continuous learning and adaptation are key in dementia care. Caregivers should educate themselves about the different stages of dementia, effective communication strategies, and care techniques. This knowledge not only benefits the person with dementia but also helps in reducing caregiver stress.

Taking Care of Yourself as a Caregiver

Caregiver self-care is not optional; it's essential. Managing stress, seeking respite, and maintaining personal health are vital for sustaining the caregiving journey. A healthy caregiver is better equipped to provide quality care.

Joining a Community of Support

Finding a community of fellow caregivers can be incredibly beneficial. Sharing experiences, tips, and emotional support with others who understand the challenges of dementia caregiving can be both comforting and enlightening.

The Journey Ahead: Preparing for Long-Term Care

Looking ahead, caregivers should consider long-term care options and strategies. Preparing for potential changes and challenges ensures that both the caregiver and the person with dementia are well-cared for, no matter what the future holds.

Conclusion: Embracing the Caregiving Experience

Dementia caregiving is undoubtedly challenging, but it can also be a journey filled with love, learning, and growth. Embracing the role with a positive attitude, preparedness, and a supportive community can transform this experience into one of profound meaning and fulfillment.

Read More:

One Mistake A Dementia Caregiver Makes By Not Traveling With Kathy Smith Shoaf

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Introduction: Preparing for the Dementia Caregiver Journey

[0:01] Today is I am recording episode 64, which is how to prepare a new dementia caregiver for the journey ahead.

I am super excited because my husband has been gone for two weeks and he is on an airplane somewhere between here and Romania and is on his way home.

It is a cold, wet, dreary day in South Carolina, and the reason I bring up my husband and his flight is because today, in today's episode, we are going to explore dementia and understanding dementia using the analogy of a cockpit and a pilot, a co-pilot, and a navigator.

So I invite you to listen to that, And then I will be teaching you guys over the next several months how to see the Dementia Care process and the Dementia Caregiving process using an analogy of a flight as well as an airplane.

So I invite you to stick around and I trust that you're going to get such value from today's episode.

Welcome to Dementia Caregiving for Families Podcast

[1:14] 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 Lizette, 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.

The Importance of Identifying as a Dementia Caregiver

[2:09] Welcome to episode number 64, How to Prepare a New Dementia Caregiver for the Journey Ahead.

Well, one of the things that I recently recognized and realized is that a lot of people, I don't know if you guys have ever experienced this or thought about it this way, but a lot of people who are dementia caregivers or family caregivers of any sort do not even self-identify with the fact that they are a caregiver and that they have this diagnosis in their life and that they are, that things have changed, even though they may have had knowledge that the person that they love, like a parent, has dementia, they truly have no understanding of what that implies and what that means.

And so family caregivers are not often identifying as a family caregiver of somebody living with dementia.

They may, for example, know that their father was diagnosed with some form of dementia, but Dad lives with Mom, and because Dad is still doing pretty good, there's this feeling or this sense that they, um, that their Mom must be fine.

[3:27] That their Mom must be coping because she's not saying anything yet.

And so, part of what I wanted to look at today is how do when you are a new family caregiver, when you just get the diagnosis of dementia, Alzheimer's, frontotemporal, Lewy body, whatever type of dementia, when you first get that diagnosis, what kind of things tend to happen and what the caregiving journey can look like and what an analogy of it is that if we don't do something sooner, what it results in.

Because what I've started to recognize and I've been doing this for over 30 years and it's amazing because the more I do this, the more I'm starting to really realize, you know, caregivers come in.

[4:26] In almost two flavors, if you'd like, the one family caregiver who gets the diagnosis and may have a little bit more of an educational background regarding dementia or what it means, or they're highly professional people that are go-getters and proactive and they jump in with both feet and they go ahead and they start to get prepared.

And they find somebody like me and they start to work with somebody like me because they recognize, what the long-term consequences or the outcome of a dementia caregiving journey is, but that's not the reality of where most people live.

Most people, they get a diagnosis and then it's crickets.

[5:12] I wanna use the analogy, and this is a horrible analogy to a large extent, but it's a very practical analogy that most of us have heard this analogy before, right?

The analogy of the frog that is thrown into cold water on a stove that is in the cold water and swimming happy because he doesn't notice that he's actually in hot water, right, because it's so slow and insidious and gradual, that the heat is being turned up.

And so he's swimming along friendly, all nice and everything, and all of a sudden one day, woe is me, I'm a boiled frog, because he's been in this environment of the cold water that was then getting warmer and warmer and warmer.

And by the time he realizes that he's in trouble, it's too late.

Well, my experience with family caregivers and primary caregivers of people living with dementia.

[6:18] Is frequently they're like that frog, because when they get the diagnosis as a new caregiver, things are maybe not that bad, right?

Because they may be getting it at the beginning, they've noticed the signs, they've seen some of the changes, they've recognized that things are happening, and boom, they get this diagnosis.

But they're kind of like that frog in the water, where it just, they're just there.

And then all of a sudden, it was insidious, the changes kept happening, they kept accommodating, they kept changing, they kept doing something different.

They kept, you know, doing stuff and not necessarily the right stuff because they didn't necessarily know what the right stuff was, and they trained themselves in the wrong way because they didn't know any better.

This is not their fault, guys. They didn't know any better because society and healthcare system has failed us.

They have totally failed us and not let us understand, you know, not given the people the help that they need when they find out they have this diagnosis.

[7:23] And then the person doesn't prepare for what's coming ahead.

The Overwhelm and Lack of Help for New Caregivers

[7:28] And then they turn into the second type of caregiver, which is the one that is overwhelmed and totally freaked out.

And their own health is going to pot.

And it doesn't matter what you say to them. They get triggered because it has been such a long, drawn-out process for them.

And they've had no help. It's not their fault either.

Or they're in these huge Facebook groups that I call verbal vomit because all it is is woe is me and doom and gloom.

And quite frankly, you are not 100% guaranteed that the information that you're getting in those Facebook groups are reliable.

And so the first thing that I want a new family caregiver of somebody living with dementia to understand is you need to get help way earlier than what you realize.

[8:21] You do not need to wait until you're that overwhelmed and stressed and freaked out to get help.

You need to actively be seeking help immediately when you get the diagnosis, but the problem is nobody is telling you that you actually need help.

Nobody is showing you where to go to get help.

[8:41] And so let me give you a quick brief overview of a whole dementia process, a journey, that you can understand this is a, like I said, a high overview of a dementia caregiving journey and what it entails.

So we're just gonna, I'm gonna give you a quick overview.

What I have done over the years that I've been working with people living with dementia is that I've realized that we can equate a dementia caregiving process, the entire process of dementia and our life like a flight.

We're in utero, we have a beginning, we have a runway, we take off, that's our developmental years.

Then we're in the flight where we may have some turbulence, some up and downs in our life, right? And then we get a, we're all going to die.

I tell everybody this all the time. I sound like the terrible person for saying this out loud.

But when we get a terminal diagnosis of any sort, whether it be cancer or whether it be a head injury or, you know, Well, not a head injury, but like a.

Like a brain cancer or something like that, we all have a, we know something's going to end, heart disease, things like that, right?

[9:57] So we, our life is like a flight, beginning, middle, to end.

And the entire dementia caregiving process, I can put into an airplane for you.

But what we're gonna start out with today is just the cockpit.

Because I want the new family caregiver to understand a few things today.

5 Steps for Children of Dementia to Care for Parents at Home 2

The Analogy of Dementia Caregiving as a Flight

[10:24] None of us, so think about it this way. Who is, most of us have flown, right? Everybody has flown.

Most people have gotten on an airplane and flown.

In an airplane, in the cockpit of the airplane, we have a pilot, a co-pilot, and way back when, when I was a kid and flying, we had what was called the navigator, right?

Nowadays, the navigation system is the instrumentation in the airplane, but the instrumentation is still appropriate as a navigator.

It literally tells you where to go, right? Why is this important?

Because when we are on our life flight, our life journey, we do not navigate it alone.

[11:13] Nobody navigates through life alone, even if you were never married.

You do not navigate through life alone. You have siblings. You have colleagues.

You have a good friend. You have a niece or a nephew.

Just because you're not married doesn't mean that you are alone, the pilot, in your airplane.

We all have co-pilots. when we are children.

Our copilot so we're still the pilot of our flight our copilot our parent is just at that point flying the plane for us because we're too young and we're a minor and we haven't figured it out yet because we're still developing but once we reach adulthood and we are the pilot of our plane we navigate through life with copilots their spouses their friends their siblings their nieces and nephews we do not navigate through life alone Nobody navigates through life alone. We have a co-pilot.

The reality of dementia is that dementia is and has an inverse relationship.

[12:22] What I mean by that is as soon as a person is diagnosed with dementia that is the high point now and and we are going to slowly start to change over time.

And if a person is diagnosed with dementia at a mild cognitive impairment, they can still fly their plane.

[12:48] But their co-pilot now needs to start to become aware of the fact that they have these changes in their brain.

And at some point or another, and if you're listening to this program, you cannot see me, But at some point or another, there's going to be a crossing point.

So the pilot starts at the highest point that they are, and the copilot is there, but they are not flying the plane.

But as the person with dementia is slowly decreasing, the person who is the copilot is slowly increasing in responsibility.

And where that X marks the spot is, that is the time.

[13:34] The pivotal time in a person living with dementia's journey that the person living with dementia, where that X marks the spot occurs, is when that person cannot safely make decisions for themselves anymore.

And that is where the copilot now takes over the flight, right?

So we, we, what I want you to understand if you are a.

If you're new to being a family caregiver for a person living with dementia, is that we can prepare for that from the moment we find out that somebody has dementia.

I have to be thinking ahead as to when is that point, and it could be two weeks, it could be three months, it could be seven years. I don't know.

But at some point or another, that person with dementia, if they live long enough, is not going to be able to make those decisions for themselves anymore.

The Importance of a Navigation System in Dementia Caregiving

[14:30] And they need the co-pilot then to take over.

Now back to the analogy of the flight, what is the navigation system?

So my contention is that the navigation system is somebody like me, and there are other people out there, but somebody like me who is a dementia specialist, who is a dementia coach, who can provide you with the education that you need, with the actual skills that you can practice, in order for you to be able to navigate this easier because that's what a navigation system is. It's a guide.

It's a way for you to make it easier. It's a way for you to go from point A to point B without getting lost.

Well, too many people are trying to navigate dementia caregiving without any sort of a navigation system.

And the healthcare system has actually contributed to that problem.

The health care system has definitely been an integral part of people navigating this journey without any support at all and getting lost and getting overwhelmed and and not having the right structures or the right systems or the right processes in place in order for them to get through this journey in a safe effective and.

[15:48] Timely manner without losing their own health without losing their own relationships without having to stop working earlier because they didn't plan ahead and they didn't have the strategies in place i can go on and on as to what the what the negative consequences are of not actually figuring this out earlier on.

The problem is that people are just like that frog.

They're in the water, and they just kind of, they just keep going, and they're coping.

And then all of a sudden, one day, they're not.

And I don't want you to get that way. I don't want you to get to that point where you're the frog trying to jump out of the hot water, and it's a little too little and a little too late to actually do something, because those are the caregivers, the family caregivers who come through this process totally decimated.

They come through this process having lost their own health, having lost their own brain health, having lost their own relationships, having no hope through the process, and having not made lasting memories for them with the people that they love and are trying to take care of because they didn't have a system in place.

[17:05] So I know I sound like a broken record, but the reality of the matter is I feel so strongly about this because of 30 years of working with thousands of people and really condensing it down to two types of caregivers.

The caregiver who makes the decision to become a caregiver and put strategies and things in place, and comes through this, even though not entirely unscathed, but way, way better off with their own health, their own relationships, their own preferences, their own needs met, everything, versus the caregiver who turns into the boiled frog who is overwhelmed and didn't make the decision and is hating it and is a reluctant caregiver and, just thinks that it's an awful process. And I want you to be the first type of caregiver.

Two Types of Caregivers: Prepared vs Overwhelmed

[18:00] What type of caregiver do you want to be?

I want you to really sit with that for a second.

And if you're ready to actually get out of the warming-up water and figuring out what you need to do, then I invite you, if this resonates with you, I invite you to reach out to me.

You can reach me in a lot of different ways. but in the show notes you will find the link.

[18:25] You can schedule a 20-minute call with me. I promise you I will give you one thing out of that call that you can use to practically help the person that you're helping and to help you.

But if you're ready to go deeper, if you're ready to actually get the help you need, then I invite you to go look at dementiacaregivingmadeeasy.com and forward slash start, and start down your own journey where you, as the co-pilot, are actually learning the skills that you need in order to provide care, right?

The practical skills, the habits and things that you need in order to do this life flight, this marathon, for an extended period of time.

Because if you're at the beginning of your journey, nobody can tell you how long it is, right?

But if you're a family caregiver coming into this journey at the beginning, you do not know if it's gonna be two years, three years, five years, 10 years, or 20 years.

There's no way for anybody to know.

So we may as well prepare at the beginning for what the worst outcome could be, which is I'm taking care of somebody with dementia for 20 years, and what is that gonna look like?

And how am I gonna put this, how am I gonna build this plane?

How am I gonna fly this plane? Who am I gonna put on the airplane to help me?

[19:45] How am I gonna educate myself regarding what the care support is that I need?

How am I going to know exactly what kind of skills that I need to learn?

How do I learn to communicate with the person now as well as in the future?

How do I know what the baggage of dementia is? How do I know what the difference of Alzheimer's dementia is and say Lewy body?

And if I have helping somebody with Lewy body dementia, I really don't need to know about Alzheimer's dementia, do I? So I've curated this group to answer those questions for you, to be able to help you carry this.

[20:26] This burden and this help you fly this airplane, help you take over and be the best co-pilot that you can be for the person that you're helping.

What support systems do you have? What are their financial? What is the preferences?

All of that, I've built it out in the analogy of an airplane.

Over the next several months, we'll talk about what different strategies are and so on.

But the primary person I am here to support is not your parent living with dementia or your spouse living with dementia.

It is you, dear family caregiver.

It is you, the person who is the primary support, the undergirding support of this person living with dementia.

I'm here to invite you into my world where we can get you the help that you need.

Don't try to fly this plane by yourself, I beg you. It is, that is when you crash and burn, guys.

That is when you crash and burn. So, if I resonate with you, the links are in the show notes below, please reach out.

You have two primary ways that you can reach out to me.

[21:29] Do like and subscribe to this podcast. You will hear more of my passionate caregiving for families living with dementia caregiving.

I am passionate about that. This is my driving passion. I get up in the morning thinking, how can I serve?

How can I serve you? How can I make your life easier? So, like I said, subscribe to the podcast and please, please, please go and review it on Apple Podcasts for me.

Apple Podcasts is the only way that we get the reviews that really make a difference.

It's great that you review it on a different platform, but Apple Podcasts is the best way.

And if you're like me, an Android user, borrow somebody's Apple iPhone and leave me a review on Apple Podcasts.

I pray that the Lord blesses you today, and thank you for being here, and I will see you in the next episode.

[22:26] Thank you yet again for joining me on today's episode of episode 64 of how to prepare a new dementia caregiver for the journey ahead.

I trust that my analogy of the frog in the hot water didn't upset anybody too much.

It was not meant to be insensitive. It is just an analogy that we've used in so many different places in the world, and I know that it's not an analogy, that it's the first time that you've heard this analogy.

So if you are a new family caregiver, I really invite you to come into my world, listen to this program, get to know me, get to know my passion.

Yet again, from today's program, we looked at understanding dementia, caregiving as being in the cockpit, between being the pilot and the co-pilot and the relationship and the inverse relationship of those two things.

And then we're going to be exploring over the next several weeks how to see dementia and dementia caregiving through the lens, through the analogy of an airplane and what all of the different systems are and how we can make it easier for you as a new family caregiver on a journey with somebody that you love who is living with dementia.

Lizette a dementia caregiving

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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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