How To Prepare For Dementia Care: Resources For Caregivers
Preparing for Dementia Care: What every caregiver needs to know
Are you ready for the challenges of dementia caregiving?
We explore the critical steps to take as you begin your journey as a caregiver for a loved one with dementia. From early signs of dementia to long-term planning, this episode offers practical advice for every stage of caregiving.
Navigating the Stages of Awareness
Caregiving often starts with a slow realization that something is wrong. In this episode, we discuss the four phases of awareness:
1) The Ostrich Phase
Denial that anything is wrong. It’s common to dismiss signs of dementia as old age or manipulation.
2) The Wishy-Washy Phase
Confusion about whether something is wrong. Caregivers start to notice inconsistencies but aren’t ready to act.
3) Houston, We Have a Problem Phase
Recognizing something is wrong and starting to seek information and strategies.
4) How Do I Do This Phase
Actively searching for solutions, resources, and support to manage caregiving responsibilities.
Each of these stages prepares caregivers emotionally and mentally for the responsibilities that come with caregiving.
God’s Plan in Dementia Caregiving
A key message in this episode is that while the journey of dementia caregiving may surprise us, God is never surprised. God’s loving hand is present throughout the caregiving journey.
We’re reminded to focus on our relationship with God and trust that He has decreed this situation for our good and His glory.
Understanding Dementia and Gaining Knowledge
It’s crucial to understand dementia to provide the best care possible. In this episode, we discuss how caregivers gain information in four ways:
1) Standby
Gathering free, general information like books, podcasts, and social media.
2) At the Gate
Seeking specific support through doctors or local support groups.
3) Flying Coach
Getting curated information from online groups or low-cost programs but needing to sift through it.
4) First Class
Receiving personalized, detailed support through dementia coaching or consulting.
Wherever you fall on this scale, the episode emphasizes the importance of continuing to learn and grow as a caregiver.
Planning for the Future
Caregivers are encouraged to start planning for the future—both for their loved one and themselves. Knowing that dementia will eventually require 24-hour care is key to preparing for what’s to come.
Additionally, caregivers should think about life after caregiving and consider how they want to maintain relationships, health, and personal goals beyond their caregiving role.
Are you prepared for the future, both during and after your caregiving journey?
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Transcript
[0:00] Hey, Christian caregiver, welcome to Dementia Caregiver Support for Christians, the podcast where I teach Bible-believing Christians how to make dementia care easier today while also helping you reimagine a brighter tomorrow. I hope that you have noticed in today’s episode introduction that the name of the podcast has actually changed from Christian dementia caregiving to dementia caregiver support for Christians. I’m working on this week entirely rebranding my business called Think Different Dementia and streamlining it to be more what I hope it to grow into as this business continues to expand and grow. I really am here to provide Christian dementia caregivers with support. And so the name change is in reflection of what it is that I hope for you to receive from these podcast episodes. This episode is airing on October the 23rd. Also, I’m going to invite you to this week, check out our new website because the whole website has been rebuilt.
[1:15] It is thinkdifferentdementia.com. And so, yeah, I am excited to announce that, and I’m excited to work on continuing to serve you as Christian dementia caregivers through this podcast, Dementia Caregiver Support for Christians. Today’s episode is episode 187, How to Prepare for Dementia Care, and it is a resource for you as a caregiver. Now, I don’t know about you guys, but most of us, as we are navigating a dementia caregiving journey, get to the point of a diagnosis over a significant amount of time. And it takes multiple doctor’s appointments, it takes sometimes years of wondering whether something is going on or years of pretending maybe that nothing is wrong. Where somewhere deep in your scientific part of your body, which I call the gut, you kind of know that something is wrong. But we all get to a point in our dementia caregiving journey where we really do not have any other options, but to really know and recognize that something is wrong. And so I wanted to take a couple of minutes at the beginning of today’s episode to just talk through these different phases of awareness. And so the first phase is what I call the ostrich phase, right? This is the phase where we just tell ourselves, oh.
[2:43] Mom’s just old, or everything is fine, or they’ve always been like this, or maybe they’re being manipulative, or maybe you think they’re just not listening to you, right? And sometimes in the back of your head, you may have a little bit more of an awareness that something is going on, but you say to yourself or you feel in yourself that maybe you really don’t want this to be true because you’re not ready to be a caregiver. And if you’re at that place in your life, it’s okay. It’s okay to feel like you’re not ready to be a caregiver. And it is a phase that a lot of people have to go through. But I also believe that when you are through that phase, that caregiving is a choice. And we do have a choice to assume the responsibility of being a caregiver. But that is a whole separate episode that we will link to in the show notes about being ready for caregiving and having.
[3:36] You know, looking at what I call when people feel like they’re being coerced into being a caregiver. And we definitely know that that sometimes is a thing. So we’ll link it in the show notes for you to go check out that episode. But the next phase is what I call the wishy-washy phase. This is the phase that people go through where they’re sort of really becoming aware something is wrong and they’re trying to understand it, but they’re going back and forth saying, yeah, maybe something’s wrong. No, everything’s okay. Yeah, maybe something’s not right. No, everything is fine. And so a person is thinking about maybe needing to do something, but they’re not quite ready to actually do whatever needs to be done. This is also the phase where we believe that the person has a lot more ability to do things than what they actually have in relation to dementia and dementia caregiving. And so there is a gap. There’s a gap between what the person can do and what we think that they can do. And in that gap is some frustration.
[4:42] Then the next phase is what I call the Houston, we have a problem phase, right? The, we know something is wrong and we are starting to really become aware that we need to do something and we need to do something different.
[4:56] This is where we’re starting to become willing to maybe listen to some podcasts or where we’re trying different things. We’re starting to learn more about dementia and dementia caregiving, and we’re starting to try to figure out the day-to-day. And we may try to understand how to use a strategy or how not to use a strategy. And this is where we truly are way more in tune to that we need to start to do things differently. Then the last phase that we have of awareness is that I really know I need to do something. I need to change what I’m doing because what I’m doing is not working.
[5:39] This is the how do I do this phase. This is where I’m actively involved. I’m trying to do things. I’m trying to do things on my own and I’m willing to commit some time, effort and money into making my life easier, making this better. Dementia caregiving journey easier for myself. So those are the four phases most people have to go through in a dementia caregiving journey. And I wanted to preface today’s podcast with this information because I know and I recognize that if you are here today and you have just found out somebody you love has dementia, or you’re somewhere along this continuum of learning how to be a caregiver or becoming more willing or aware of the fact that you need to change as a caregiver.
[6:35] That this truly is a way that people have to go through these different phases in order to be ready to become a caregiver. So what we’re going to look at in today’s episode is the following. The first thing that we’re going to look at is, I want you, even though you are just becoming more prepared for your caregiving journey, or you might have just found out that God is not surprised by your dementia care journey. God is, we may be surprised, but God is not surprised. We serve a good, kind, loving God who has decreed this specific providence, and I’m going to use the word kind providence in your life and in the life of the person that you are helping who is living with dementia. We need to remember that God is in control and that we know that he is in a relationship with us. And because God is a God of relationship, our caregiving role.
[7:39] The first thing we have to do in becoming prepared for this caregiving role is to focus on our relationship with God. And then after that, we focus on our relationship with one another. And God is very much in control of this journey, and he has decreed this kind providence for our good and for his glory. And so I want you to ask yourself today, as you are thinking through this particular growth journey in your life, in your sanctification process, ask the Lord, what are you supposed to be learning through this process that is for your good and for his glory? And a very different way of starting your dementia caregiving journey.
[8:26] Your dementia caregiving process, is to focus on not the doom and gloom of the world, not the how hard it is, not the how many challenges there are, but how this is to impact your life for your good and for God’s glory, as well as how is this journey impacting the sanctification process of the person that you love who is living with dementia, particularly if they are a believer. And so that’s the first place that we’re going to start. The second thing that we’re going to look at today is how you need to understand dementia.
[9:03] So we know God is not surprised by dementia. And the second thing is that we need, as the family caregiver of somebody living with dementia, to understand what dementia is and what dementia isn’t. Now, there are four ways that people typically get information related to dementia and dementia caregiving. And so what I wanted to start with today is looking at the four different stages or the four different ways that people actually get information. And I use the analogy of getting ready to get on an airplane and take a flight. And there’s a particular reason why I use this analogy. It’s because I can actually explain the whole dementia caregiving journey to you using an airplane, a flight, and all of the different components of a flight. But that’s a whole separate episode. But I wanted to talk to you about just thinking about getting your dementia education. We do it in one of four ways. The first way we do it is where we are getting very general information and very general solutions. And I call that being on standby. So when somebody is on standby, and we’re talking about gaining understanding or education related to dementia, what they’re typically doing is they’re getting free information, they’re reading books, or they’re watching TikToks, or they’re listening to podcasts, or they’re checking out a YouTube channel.
[10:31] Now, none of that is bad. It’s definitely a place to start. But you have to consider that if you are getting all of your dementia caregiving education in those modalities or in those specific ways, the information is very general. It is not specific to you and your own specific situation. And so it’s very limited. Yes, it’s free, but you have to really be able to weed through it. You have to really be able to look at all of, you know, you have to be very discerning in how you’re consuming that information, but it has value. And most people, when we are trying to learn something, you maybe start out on standby. The next phase that a person goes through related to gaining information is what I call at the gate. This is where we’re starting to get a little bit more specific information related to dementia, but the solutions are maybe still a little bit more general because we’re still waiting to get on board. Now, what does that look like? Those are things like local support groups or maybe some other supportive environments.
[11:40] It may be going to the doctor and getting very specific dementia information, but not specific solutions to you in your particular situation. Because the doctor may not be able to take the time to be able to give you all of those very specific strategies and tools that you need in order to be able to help the person that you are helping. The third way that we get our information related to dementia and dementia caregiving is what I call flying coach, right? Or just being in the main cabin. Maybe comfort.
[12:15] Comfort Plus. But on the airplane, we’re on the plane, we’re getting more specific solutions and we’re getting more information, but the information is more generalized because we are not necessarily talking to the, you know, we’re pulling that information out. There’s a lot of information, but we’ve got to weed through it. And where we may be finding some of that is like curated Facebook groups or some low-cost memberships. We’re getting good information, but we have to spend a lot more of our own effort and our own time in order to be able to actually pull out the specifics for the person that we are helping. Now, the fourth way that we are able to get information, and my hope and my prayer is to get more people to this particular spot is what I call first class, because this is where we get very specific information.
[13:21] Like very, very detailed, good information about what dementia is and what dementia means, but also very specific solutions, specific solutions to your specific individual problems. Now, what does that look like? That looks like specific dementia coaching or consulting or some paid programs that are way more tailored and have individualized support. So that is the way that most people go through understanding dementia is those four different phases of education. And I just wanted to share and ask you, where do you fall in that? How much easier would it be for you if you had a little bit more individualized support? Like I said, none of these different levels are inherently bad, but some of them have a lot more challenges. Information is freely available on the internet. The reality is that oftentimes when it is free, it means I need to be the one weeding through everything and seeing and pulling out the information for myself, which takes time and effort. And if you’re a caregiver, you know, sometimes you don’t have a lot of that. And so the third thing we’re going to look at today that you need to do to be prepared for your dementia care journey is you do need to learn the practical day-to-day tools.
[14:46] Now, the very first place that I want people to start is by learning to speak dementia. And we immediately, when we know that there is a diagnosis, we need to learn how to start to speak dementia. The challenge that oftentimes happens is because we’re looking at people who might have mild cognitive impairment or the beginning stages of dementia, they still look like we can reason with them. They still look like we can dialogue and have these conversations that we always used to have with the person. But the reality is from even before diagnosis, when this starts to happen, the person’s brain is changing, which means that the people around them need to change. And we immediately need to learn how to speak dementia. But what happens is that we wait and we continue to speak to the person or communicate with the person in the same way we’ve always done because we don’t know any better.
[15:47] And the reality of the matter is it’s not the physical aspect of caregiving that burdens caregivers the most. It is the emotional component of caregiving, which is that relationship component that we were talking about initially. And our relationship with the person living with dementia is the foundation of how our journey is going to unfold. When we have a good relationship with that person, and when we learn how to speak dementia from the beginning, we can absolutely change the outcome of our journey. But it takes time to learn to speak another language. It takes time and effort and money to really learn how to speak a different language, which means we have to invest in either ourselves or in a program. We have to invest the time that we need in order to learn how to speak dementia. And then I might hear you saying, but I don’t have the time to do that. Well, the reality is we’re going to take the time on the front end or we’re going to take the time on the back end because we’re dealing with all of these challenging behaviors that people have or responsive behaviors that people have because we didn’t take the time and we didn’t invest the effort on the front end to learn how to communicate differently with the person.
[17:10] Are you a Christian dementia caregiver struggling to cope? Does dementia caregiving really need to be this hard? Join our free monthly Ask the Dementia Coach monthly meetup, and get personalized guidance and support from me, a pastor’s wife.
[17:30] Occupational therapist, and Christian dementia coach. By blending evidence-based strategies with Christian principles, you can radically improve your caregiving experience. Register now for our next Ask the Dementia Coach monthly meetup today. We limit our registrations, so don’t miss out. Sign up today.
[17:55] If you break the relationship that you have with the person that you are taking care of at the beginning of this journey, because you are reasoning with them, because you’re arguing with them, because you’re frustrated with them, I guarantee you the results that you are going to get is different than it would be if we can fix this on the front end. So it’s just an opportunity for you to think a little bit differently of this journey. Don’t wait too late to get help because there is help available. And just know that if you take some time on the front end to really work on learning how to speak dementia with the person that you’re helping, it can make your journey significantly easier. The last thing I wanted to touch upon today is that when you are starting a dementia care journey, when you’re becoming prepared for it, you need to plan for the future. And I’m not only talking about planning for the person who is living with dementia. That is a part of it, but you need to plan for your own future. We serve a God who is future-focused.
[19:06] The Lord has an ultimate plan for us, and that is a new heavens and a new earth, which means that there is going to come a time when there is a consummation of us who are believers with the Lord Jesus in glory. And that is super exciting. But the Lord has us in our entire journey as a Christian focused on the future, focused on this consummation, focused on being in heaven with him. And as we are navigating this dementia caregiving journey, we need to start this journey with the end in mind. And that is twofold. That is the end related to the fact that And anybody who is living with dementia and who lives long enough will require 24-hour care. So we have to prepare for that. We have to know and understand that if the person that you are caring for lives long enough with their dementia, they will need 24-hour care. So how do we prepare for that? How do we prepare for where that’s going to occur? How do we prepare for how we’re going to pay for that?
[20:14] How do we prepare for what our preferences are and all of those kinds of planning the details of the journey? But we also have to start to plan for the future after caregiving. Because we are so focused on the dementia care journey that we forget that there is life after dementia. And so my challenge to you today is if you are starting out this journey.
[20:41] Really contemplate and ask yourself the following questions. If my person lives long enough and they need 24-hour care, what is that going to look like? If I am the daughter of somebody living with dementia and we’re through this journey. What do I want my marriage? What do I want my relationships with my own children to look like? What do I want my health to look like? We need to start our dementia caregiving journey with the future of our future, planning for the future, beginning with the end in mind. We need to start our journey thinking about these things because the reality is if all you focus on is the day-to-day, I guarantee you by the time you get to the end of this journey, you will have become one of the 30% of caregivers who pass away before the person that they are caring for, or you have neglected your own health and your own wellness to the point that you have now taken the can and kicked it down the road.
[21:43] And now your children are having to become caregivers to you because you didn’t take care of yourself. So some things I wanted you to think about today. So what are some next steps? A couple of next steps that you can take is if you like these podcast episodes, subscribe to them, share them with another Christian who is a caregiver. A lot of these principles are applicable to more than just dementia care, but I certainly value having other people in the audience. So like and subscribe and share these episodes with one person today. Go to Apple Podcasts and leave a review on Apple Podcasts for the podcast. It really does make my day and it really does help this podcast grow. Today’s the 23rd of October. Tomorrow, I will have my monthly Ask the Dementia Coach episode, monthly meetup. So it’s not too late to sign up for that. The link is in the show notes. So go ahead if you have time tomorrow at 6pm to join me, be a co-creator of this podcast and you will get one-on-one coaching with me. And so you have that opportunity.
[22:53] Another way that if you needed to, I wouldn’t normally do this so close together. However, Hurricane Helene meant that we had to delay the other monthly workshop to this coming Saturday, October the 26th is our next free workshop. The link for the sign-up is also in the show notes. So you have three different ways this week that you can connect with me.
[23:21] Subscribe, and share this podcast episode, sign up for the Ask the Dementia Coach, or sign up for Saturday’s free workshop. And as I end all my episodes, may the Lord bless you and keep you and shine his gracious light in your life. And I will see you in our next episode.
