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Plan Ahead for Dementia Care: A Guide for Families

Are you stepping into the role of a caregiver for a loved one with dementia without a roadmap? The unexpected twists and turns of dementia caregiving can be overwhelming.

It's akin to embarking on an unplanned vacation, where the excitement of spontaneity can quickly give way to the chaos of being unprepared.

This episode sheds light on the critical importance of planning ahead in dementia caregiving, offering a beacon of hope and guidance for those navigating this challenging journey.

The Power of Preparation

Caregiving for someone with dementia is a path filled with uncertainties. The episode beautifully illustrates this through an analogy of an unplanned vacation, emphasizing the pitfalls of being unprepared.

It's a journey that demands foresight, much like meticulously planning a trip to ensure you have all you need for the destination. Without a plan, caregivers might find themselves ill-equipped, facing the dementia caregiving journey with the wrong set of tools and expectations.

Setting Goals for Success

Interestingly, the episode highlights a striking statistic: 76% of people who are committed to their goals will achieve them. This insight underscores the essence of setting clear objectives in dementia caregiving. It's about beginning with the end in mind, understanding the importance of having a vision for the caregiving journey.

This proactive approach not only sets the stage for a more manageable experience but also significantly reduces the risk of caregiver burnout.

Strategies for Effective Dementia Caregiving

The episode doesn't stop at emphasizing the need for planning; it offers tangible strategies to embark on this journey more effectively. Gathering information from reliable sources, setting realistic goals, and being adaptable to the evolving nature of dementia caregiving are paramount. These strategies serve as the compass that guides caregivers through the complexities of their roles, ensuring they're not only surviving but thriving in their caregiving endeavors.

If you're stepping into the world of dementia caregiving, remember, preparation is key. Embrace the journey with a plan in hand, and you'll find the path ahead not just manageable, but also filled with moments of joy and fulfillment amidst the challenges.

Read More:

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

Check the other podcast: https://www.thinkdifferentdementia.com/category/podcast/

Email me: [email protected]

Message me at Instagram: https://www.instagram.com/thinkdifferentdementia/

Listen to the Podcast

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

a person writing on a notebook | Need to Plan Ahead

Unplanned Vacations and Dementia Caregiving

[0:00] How many of you guys have ever been on vacation and not planned ahead?
Now, sometimes those vacations can be super fun and exciting and you get everything that you want out of it.
But sometimes those vacations can be a big old mess.

[0:22] Most people, when they go on vacation, plan for it. They have a destination.
They know what they need to take with them. They know if they're going to a cold climate to take their warm clothes, or they know they need to have their passport.
Now, I want you to imagine that you were going on a trip somewhere and you're not preparing for it, but you get on this trip and you have everything wrong with the trip because you don't have the right clothing.
You're actually going to Sweden in the winter and you have packed summer clothes for Brazil in the summer.
That is a big problem, right?
So dementia and dementia caregiving can be very much like this.
When you do not plan ahead for your dementia caregiving process, I guarantee you, you will not end up where you want to be.
So listen to episode 95, which is do you need to plan ahead when dementia caregiving and find out what you as a family caregiver for somebody living with dementia can actually do to plan ahead.

Introduction to Dementia Caregiving for Families

[1:36] 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 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.

Importance of Planning in Dementia Caregiving

[2:31] Are you one of 25% of people who ditch their New Year's resolutions within a week, like I am?
Or did you know that 92% of people don't actually achieve the goals that they set for themselves?
That's a lot of people setting goals that are not making their goals. goals.
But did you also know that 76% of people who are committed to reaching their goals will actually achieve it?
So if you set goals for yourself, 76%, that's about three quarters of people, will actually reach the goals that they set for themselves.

[3:19] So why is this important in dementia and dementia caregiving, because it is important when you are a dementia caregiver to actually plan ahead.
But we don't talk about that. Nobody talks about the fact that it is necessary for us as a dementia caregiver to actually plan ahead.
So today's episode of Dementia Caregiving for Families, we're going to talk about what you need to do to actually plan ahead when you're dementia caregiving?
And do you need to plan ahead when dementia caregiving?
And the short answer is yes.
Yes, you need to plan ahead.
So we're going to look at today's episode in three parts.
We're going to look at beginning with the end in mind, what the risks are for not planning, and then some strategies for planning.
So three simple steps, beginning with the end in mind, the risk of not not planning ahead, and then strategies, some practical strategies for planning.

[4:23] What do I mean by beginning with the end in mind?
I'll not forget this. I'll never forget this.
I was privileged enough to be a support person on a dementia-supported cruise in January.
It was a unique and overwhelming and wonderful and thrilling and awe-inspiring experience to be one of these these dementia caregivers, these professional dementia caregivers on this cruise where we were supporting nine people living with dementia and their family caregivers.
And I was sitting with the family caregiver and we were talking about the business that I have, which is supporting family caregivers of people living with dementia using a coaching program, a low-cost coaching program, or if you're interested in one-on-one coaching, I do that as well.
And one of the things I said to her is, the way I start working with the family caregivers of people living with dementia is we start with the end in mind.
And she looked at me and she's like, that is, I've never heard anybody say that.
I've never heard anybody say start with the end in mind.

[5:37] So I'm going to give you a great quote from Zig Ziglar that says, if you aim at nothing, you will hit it every single time.
The problem with dementia caregiving is we aim at nothing.

[5:54] We don't plan for it because people don't believe they can plan for it.
And I'm not talking about the legal documents and the healthcare power of attorney and the financial power of attorney and those things, even though every one of those things is vitally important and it is something we certainly discuss as part of the program that I have working with people.
That is not what I I mean when I say begin with the end in mind.
Because if you don't begin with the end in mind, you're not going to get where you want to be.
You will be in a totally different place by the time you are done with your dementia caregiving journey than what you want to be in.
Because we can plan for it. We can absolutely plan for it.

[6:45] So when we begin with the end in mind, Did you know that caring for a person with dementia doesn't have to be this hard?
If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors, without stress, anxiety, or burnout.
I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

[7:30] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[7:44] We start with looking at where you want to be, what the best outcome for you and your family will be by the end of your dementia caregiving journey.
I'm not talking about what people's preferences are.
I'm not talking about any of those things.
I'm talking about what is the best outcome for each of the family, for the entire family, and that includes the person living with dementia.
What is the best outcome? I'm not talking about the basics, nuts and bolts of how to take care of somebody living with dementia.
I'm talking about what do you, as the family caregiver of a person living with dementia, what do you want to look like when you're done?
Do you want to be sick yourself?
Because the statistics show that you will be if you don't plan ahead, if you don't take care of yourself. What do you want your health to look like?
About 44% of people who are family caregivers of a person living with dementia report anxiety, depression, and depression.

[9:02] Lots of other negative outcomes related to their own health because they are not planning ahead.
What do you want your relationships to look like?
Family caregivers of people living with dementia, and I forgot what the percentage is. I saw it earlier today.
I'm going to lie if I try to come up with that, so I'm not going to come up with the statistic.
But our family caregivers that are are still raising their own children and they're a family caregiver, whether they be a spouse of somebody who is older or whether they be the child of a parent living with dementia that is still parenting their parent.
They're the sandwich, their own child.
They're the sandwich. They're the filling of the sandwich generation.

two couple senior on car

What do you want your health to look like?

What do you you want your relationships to look like. In last episode, we talked about 63% of caregivers of people living with dementia who actually die before the person that they're taking care of.
Do you want to be that person? Number one.
Number two, do you want to be, you know, what happens to the person that you're then taking care of, right?
If you're that 63% of people who die before the person that they're caring for, I guarantee you that person that you're caring for is likely going to be in an institution.
They will be in a nursing home or an assisted living or a memory care facility because there's nobody else who's going to step up and do it.
At least that is my experience, my never to be humble opinion.
And then, so we have to, you know, know what the best outcome for you is, but we also want to know what the best outcome is for the person that you're taking care of.
There are multiple different plans that we can come up with.
We're not gonna talk about those plans in today's episode, but we begin with the end in mind.
We talk about things like if the person lives long enough with their dementia process.

[11:07] And you want to take care of them at home, would you be okay with that person passing away at home?
So we come up with comprehensive plans, keeping in mind where we want to end up.
A pastor friend of mine always uses this conversation about him and his father-in-law sailing many, many years ago.
And when you're sailing and you're going towards an island, you're constantly course correcting.
You zig a little bit this way and then you course correct back towards the island or you go that way and then you course correct back to the island.
Well, when you begin with the end in mind, if you start to go off track.

[11:52] You can course correct and you can bring yourself back on track because you know where you're going.
You have your outcome in mind of what you want to achieve by the end of your dementia caregiving journey.
So that's the first thing that we look at. We begin with the end in mind.
The second part of what we're looking at today is what are some of the risks of not actually planning for a dementia caregiving journey?
And we're going to talk about the risks Risks come up in a lot of different ways.
One of the risks we've mentioned earlier today already in this episode is your own health and your own relationships as the family caregiver.
I am the daughter of two parents who have cognitive loss, and I am a Christian wife of a husband who is an ordained pastor. Right.

[12:48] My belief is that I have to start with my husband and my relationship because the Bible teaches very clearly that I need to leave and cleave.
And so I've left and cleft with my husband, and my husband and I are 100% willing to help my parents, but it is subservient to our relationship, not in lieu of our relationship.
So in other words, what that means is if my husband was not on board with being supportive and helping take care of my parents, then my relationship with my husband actually is more important than my relationship with my parents.
And so the risk of not planning means that you're not in control.

[13:35] You don't know what you're shooting for.
You don't know what you're aiming for. Did you know that the lifetime cost of a person living with dementia is about $400,000, according to the Alzheimer's Association Fact and Figure Report, $400,000 over the lifetime of one person living with dementia?
And did you also know that 70% of that cost is carried by families providing unpaid care and out-of-pocket medical expenses?
So 70% of $400,000 is being provided for by families for one person living with dementia.
That is a very expensive proposition.
Very, very expensive.

[14:36] And that is $280,000 worth of care being provided for one person through unpaid family caregivers or out-of-pocket expenses.

[14:52] So if you just take that into consideration, that you need to plan for the fact that you you will be providing care.
You can be proactive and seek practical solutions to your problem and talk to your family and come up with a plan.
It is possible. I've seen thousands of people do this and thousands of people who did not have money.
I'm not talking about people who were paying private duty caregivers to stay with their family.
I have seen both sides of this equation and I've seen both sides being done exceptionally well, and I've seen both sides being done exceptionally badly.
So I've seen it all. I have absolutely seen it all.
And then another risk of not planning is all of a sudden you are living in the crisis because you didn't plan for the crisis.
If you don't anticipate the inevitable changes that a person living with dementia is going to to have over time, you will live in the crisis.

[15:59] So for example, I mentioned earlier in this episode that my husband and I are willing to take care of my parents.
We are willing to help them. And we are in the process of trying to determine what the best plan is.
So we downsized, we moved, we sold our house, we moved into a duplex in order for us to be closer to my mom and dad. We're supporting them still living on their own at the moment.
But we have, like everybody, financial constraints and concerns and things that we're piecing together on an everyday basis.
But we talk about it and we're planning for it, my husband and I.

[16:38] Have recognized that in order for us to live with my parents, we would have to have a separate space.
So we're looking at, is it time to maybe sell property and buy a different property where we're all under one roof?
What are the pros of that? What are the cons of that? What does that look like for our relationship? Is it wise?
What does that do for the quality of life for my my parents.
All of these factors are things that we are considering, but we are considering it now because we're not living in the crisis, and we recognize that we have kind of one foot on a banana peel and the other one on another banana peel, and we're waiting for something to change, and then we will be living in the crisis, and we don't want to live in the crisis.
So we're anticipating the inevitable changes that are occurring with my parents so that we can avoid the crisis.

[17:32] Yes, there will be a crisis, but yes, you can somewhat plan for a crisis by knowing what you are going to do.
I call it the imperfect perfect plan, or I call it sometimes I tell people it's the if this, then that.
So if this happens, then I do that. If this happens, then I do that.
So an if this, then that plan means that I've already thought through what the inevitable possible path can be for each one of the things that occur.
And I'm not talking about all the specific details.
I'm just saying, okay, something happens, one of them's in the hospital. What does that mean?
Well, this, this, and this, right? So anticipating the inevitable changes so that I don't live in the crisis.

[18:26] By not doing that, I am risking my own health and my own life and my own mental well-being because I didn't anticipate it.
And also, one of the biggest risks of not planning is it is a significant contributor to caregiver burnout.
It is one of the reasons caregivers burn out is because they're not planning ahead.
They're not thinking through the consequences of what could happen.
They're not anticipating the changes that are inevitably going to come.
And this leads to a direct decrease in quality of life of the caregiver, as well as the quality of care for the care recipient or the person living with dementia.
So not planning equals an increased risk for both the person living with dementia, as well as the person who is the care partner.
And so the third thing we're going to look at in today's episode are strategies for planning, right? So what are some strategies?
What can you do? If you are a family caregiver who wants to be proactive, if you want to plan ahead for your dementia caregiving journey, what can you do? Well, the first thing you have to do is you have to start gathering information.
Where can you gather information?

[19:50] Well, you can Google it, right? You can go to Google and you can Google dementia caregiving. You can subscribe to this podcast.
You can listen to other reliable podcasts.
You can gather information in a variety of different ways.
One way is buying books and reading them. A second way is watching TikToks and Reels.
Skills you can hop on YouTube and watch some videos on dementia and dementia caregiving you need to start gathering information but you have to get reliable information so you have to be selective in who you choose to follow and who you choose to listen to it can be very overwhelming if you're out in the big bad world and you just start to google dementia and dementia care it can be super overwhelming.
Did you know that caring for a person with dementia doesn't have to be this hard?
If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors without without stress, anxiety, or burnout.
I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

[21:19] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.
So another way that you can gather information is by joining educational programs.
There are free programs available. There are paid programs available.
There's a lot of of different places that you can get your dementia caregiving information.
But the first thing that you have to do is you have to get information.
The second thing you have to do is you have to have more realistic goals and timelines. You have to plan.

[22:02] You have to come up with a plan. You have to have a timeline.
And I'm not talking about a definitive, although sometimes it could definitely be a by April 1st, 2024, we need to do X.
I'm not talking about that as much. I'm just talking about general timelines.
Like for example, we have a general timeline with my mom and dad.
We know my parents are not going to be able to live alone forever.

[22:33] We have a general timeline that we know that it is probably within the next year to 18 months that we're going to have to implement the next part of the plan.
It could be sooner if we slip on one of the banana peels, right?
It might be a little bit sooner than that.
Then the plan is, well, we deal with the crisis, which I know based on experience is about two months.
The crisis is always about two months. So we deal with the crisis.
And then after the crisis, then we have a two-month window to implement the next step.
And what that next step is, we are in the process of still working out.
We have two, we have three tentative plans, but we have realistic goals, we have realistic timelines, and we know what we're going to do.
And then the third part of strategic planning for a dementia caregiving process is regularly reviewing and adapting your plan.

[23:35] Regularly reviewing and adapting your plan. Kind of like my pastor friend that was sailing, that was constantly course correcting, constantly course correcting.

[23:47] Dementia caregiving is not a set it and forget it type of a plan.
It's not something that you can set up and then say, oh, I'm not going to revisit this.
It is something that you're constantly tweaking and adjusting, constantly tweaking and adjusting, because even though the process is very, very, very predictable, or fairly predictable, each particular person's.

[24:12] Timeline is different. So I can't tell you mom is going to be one year and dad is going to be three years or so-and-so is going to be two months versus 10 years.
That's not what I'm talking about, but you constantly have to tweak and adjust, tweak and adjust and know where it is that you want to go.
And it circles back towards beginning with the end in mind.
So you You have to start with the end in mind. You have to know where you are, what you want to achieve through your dementia caregiving journey.
Because like Zig Ziglar said, if you aim at nothing, you will hit it every single time.

[24:56] So a quick recap of today's episode is begin with the end in mind, what the risks are for for not planning ahead, and then some strategies for you to be able to start a process.
Yet again, today is the 22nd of March, and we have another nine days of my Founding 54 Family Members program, where I am developing a low-cost group coaching program for family caregivers of people living with dementia, because the research has shown that longitudinal care over time is what is required for the person to actually be able to be a successful caregiver and make it through this marathon, because it is a marathon, not a sprint.
So if I resonate with you, please, I'm asking you to consider joining this entry-level early adopter program, where you will have lots of benefits by being an early adopter.
The biggest benefit that you will get from being an early adopter is the fact that for the lifetime of the person that you join for, for mom's lifetime or for your spouse's lifetime, whoever the primary person is that you are helping, for their entire lifetime.

[26:19] I promise to walk with you, whether it be one year, five years, ten years, whatever, whatever, to walk through this process so you will never be alone again.
And we're doing this in a community, and it is 100%.

[26:35] Evidence-based practices, and we are using dementia coaching as the modality for you to be able to get ongoing support.
So if you're interested, reach out to me.

You can email me at [email protected].
You can hop on a phone call with me. You can join my next free workshop.
I think I will have one more next week in order to round out this Founding 54 families.
If you're ready to join, the link is in the show notes below.
I invite you not to wait any longer. If you're on the fence, go ahead and join because it is a very, very practical program that I'm putting together.
If you're on the fence, listen to episode 88.
It is an actual client of mine where we talk about how to decrease your stress as a dementia caregiver.
So go listen listen to episode 88. The link is in the show notes below.
And thank you for listening today. And we will see you in the next episode.

[27:45] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you.
You can serve me by leaving a review on Apple Podcasts. And join our free Facebook group, Dementia Caregiving for Families.
It's a positive and proactive space to navigate dementia caregiving together.
Get practical tools and find support but without the verbal vomit.
Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis.
So join today and see you next time as our flight takes off.

lizette cloete on laptop

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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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