Dementia Caregiving May Be Hard But It Is Simple
Dementia caregiving often feels like a daunting task. But what if you could simplify it? In this episode, we explore a fresh, straightforward approach to dementia caregiving that breaks it down into three essential components, making your journey smoother and more manageable.
The Three Essential Components of Caregiving
Think of caregiving as a three-legged stool. Each leg represents a crucial part of the caregiving process. Without one, the stool—and your caregiving efforts—wouldn’t stand.
These components are:
1) The Problem (Dementia)
2) The Person (Your Loved One with Dementia)
3) The Caregiver (You)
Recognizing Patterns in Dementia Care
Each person’s experience with dementia is unique, much like a snowflake. Yet, there is a pattern to dementia caregiving that, once recognized, can help you navigate the challenges more effectively.
The concept of retrogenesis, meaning “back to the beginning,” shows that dementia patients often revert to earlier stages of development. Understanding this predictable path can help you anticipate and prepare for your loved one’s needs.
Understanding Your Loved One’s Unique Needs
Every individual with dementia has their own story, background, and habits that shape their behaviors and needs. By understanding their personal history, you can provide care that respects their preferences.
For example, if your loved one prefers baths over showers, accommodating this preference can make their routine more comfortable and less stressful.
Leveraging Your Strengths as a Caregiver
Caregiving is a unique journey for everyone. Recognize and utilize your strengths to enhance your caregiving experience. Whether you excel in planning, organizing, or hands-on tasks, leveraging your abilities can make your role more effective and fulfilling.
Acknowledging your limitations and seeking help when needed is also crucial for maintaining your well-being.
Finding Support and Community
Connecting with a supportive community can make a significant difference in your caregiving journey. Sharing experiences, asking questions, and receiving guidance from others in similar situations can provide invaluable emotional and practical support.
Consider joining specialized groups like Christian Dementia Caregiving to connect with people who share your values and experiences.
Free Personalized Coaching Opportunity
To further support caregivers, Lizette offers a free one-on-one coaching session called a “dementia flight audit.” This personalized session helps address specific challenges you face in your caregiving journey.
Take advantage of this opportunity to receive expert advice and practical solutions tailored to your situation.
Conclusion
While dementia caregiving has its challenges, understanding and applying the triad approach, recognizing patterns, and leveraging your strengths can simplify the process.
Remember, you are not alone. Seek support, embrace the patterns, and continue to provide compassionate care to your loved one.
Join supportive communities and utilize available resources to enhance your caregiving experience. Together, we can navigate the challenges of dementia caregiving with hope and resilience.
Read More:
Talking About Caregiver Burnout With Michelle Gordon
Check the other podcast: https://dignicarebydesign.com/category/podcast/
Email me: lizette@dignicarebydesign.com
Message me at Instagram: https://www.instagram.com/thinkdifferentdementia/
Listen to the Podcast
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0:01] Most of us as family caregivers of somebody living with dementia have heard these words or have said these words. Caregiving is so hard. Dementia caregiving is so difficult. I feel so overwhelmed. I am so tired or frustrated or multiple different descriptions of a caregiving journey. But today I want to encourage you in this episode 151. Dementia caregiving may be hard at times, but it’s actually simple. The process of caregiving is simple. It is like a three-legged stool. You have to have a person with a problem, you have to have a person who is a caregiver, and you have to have a diagnosis of some sort. And so the way I’m going to explain it in today’s episode is by talking about looking at the pattern of dementia, looking at the product or the person living with dementia, and then looking at the third part of it, which is the.
[1:23] Caretaker or the craftsman, the caretaker or the craftsman, that is the person who is providing the care. So you have to have the problem, you have to have a person who has a problem, and then you have to have the person who is the caretaker. So check out today’s episode. I know you will find tremendous value in it. And if you haven’t joined my free Facebook group, it’s Christian Dementia Caregiving. Join the community. Come hang out with me there. I am active in the community answering people’s questions and trying to give people a little bit more or a little higher level of support there. So go ahead and join the free Facebook group and listen to today’s episode.
Reframing Dementia Caregiving as Simple
[2:18] Well, what’s up, Christian caregiver? Welcome back to the podcast where we teach Bible-believing Christians where to find help, as well as how to still have hope and find ease in their dementia caregiving journey. We use your God-given talents and strengths in order to help you in this journey so you can continue to create moments of joy and find peace of mind. Thank you so much for coming back to today’s episode. Today’s episode is going to be a little bit different because this is a framework that I have just recently started to think through a little bit. And the topic for today’s podcast is that the world sees dementia and dementia caregiving as extremely hard, but I want to reframe it and tell you and teach you that it actually can be simple. And I know that this is not a popular way to view dementia and dementia caregiving.
[3:34] I’m going to take you back to the reason why I started this business. My business is called Think Different Dementia because I want people to think differently about dementia and the whole dementia caregiving journey. I started the business because about five years ago, four and a half, five years ago, when I was working 60 hours a week and frustrated in working for other people and being told how I had to treat my patients and being constrained by the healthcare industry.
[4:14] I decided to swap in a 60-hour-a-week job for a 80-hour-a-week job by starting a business. And the reason I started the business was I started hanging out in these huge, big Facebook groups. I know you guys have all been in these Facebook groups. There are 40, 50, 60,000 people in these Facebook groups. But what I noticed as I was hanging out there and trying to bring people value by answering their questions and giving them a way to communicate with me as a occupational therapist and as somebody specializing in dementia, there were two big things that I noticed. The first one was it was toxic. It was like people could go into these Facebook groups and feel anonymous. And because they felt anonymous, they just did what I call verbal vomit. And they just spewed out all of the negative things related to dementia and dementia caregiving. But then the second part of it, and this was the more important part at that time for me, was that people were not getting reliable information.
[5:36] And it was those two components as well as the fact that everyone and all through this narrative, there was this constant refrain that dementia and dementia caregiving is confusing. Have you ever heard anybody say, oh, if you’ve seen one patient with dementia, you’ve seen one patient with dementia.
[6:04] Well, that statement, that way of thinking about dementia is not a helpful way to think about it because I cannot tell you how many people, how many stories I have of families going to the doctor and they’re trying to explain to the doctor the challenges that they’re experiencing, the stuff that’s frustrating, the stuff that’s hard, the stuff that’s It’s overwhelming. And the doctor says things like, well, there’s nothing you can do, or it’s just dementia, or all of these types of refrains that I just hear over and over and over and over again in healthcare space. And it really does not serve the family caregiver very well at all, because I serve a God of order.
[7:01] We’re how many billions of people on the earth and other than if you’re an identical twin or a triplet or whatever, we’re all unique and different. We are all fearfully and wonderfully made and we are all different. We have different experiences and cultures and languages and and relationships, and personalities, and abilities in our thinking, and all of these different things. But we are all human, and we are all created in the image of God. And God created a world that is orderly. It is not a world of chaos.
[7:43] And so the big thing I wanted to start to talk to about is dementia caregiving might be hard at times, but it is simple. It actually is simple, but because people are not looking for the patterns, people are not looking for the consistencies, people are not looking at a created order in, you know, created by God order in dementia, it appears to people who are not thinking through in a biblical way like it is chaotic. And yes, every person’s brain is different. And yes, depending on where in the brain the person has whatever going on, you may see certain things or you may not see other things. But even in that, there is concern.
[8:38] An order. There is an order to it. And so the first thing I wanted to bring out to you guys today is that we have to look at God as being a God of order, not a God of chaos, and that our chief end is to glorify him and enjoy him forever, despite the fact that we are helping somebody living with dementia. So all of that, just as a introduction to today’s episode.
The Triad of Caregiving: Pattern, Product, Caregiver
[9:11] Now, what we’re going to talk about today is what I’m calling the triad of caregiving.
[9:18] And the reason I call it the triad of caregiving is because we always have these three things going on related to a caregiving situation. Whether it be taking care of somebody living with congestive heart failure or chronic obstructive pulmonary disease or whatever, it doesn’t matter what the caregiving situation is, a stroke, whatever. We’re always going to have these three stools or these three legs of the stool, a triad in a caregiving journey. Without Without these three things, there isn’t a reason for caregiving. Without one of these three things, it falls apart. There’s no reason to be a caregiver. So I want you to think about snowflakes.
[10:08] Now, I know that’s an odd thing to say. Okay, think about snowflakes. Okay, what about snowflakes? We all know that snowflakes are different, but we all know it’s snow. If you are able to catch a snowflake without it melting on your finger, if you have a pair of gloves and it’s super, super cold outside and you can catch one snowflake, that snowflake looks different than all the other snowflakes falling. And they have a pattern in them. Each snowflake has a different pattern. And so each person is also like a snowflake with a different pattern, a different part of this created order. And there is a pattern to dementia caregiving. So it cannot be confusing once you know how to recognize the pattern. There is a pattern to dementia caregiving. So the three legs of this stool are the following. You have to have the problem, right? Or the pattern per se, dementia.
[11:12] That is the problem. You have to have the product that is the person living with dementia. And then you have to have the caregiver or the person who is the caretaker. You have to have those three things. So we’re going to, I want you, now we’re going to switch analogies from a snowflake where everything is different and we’re going to talk about sewing. And I am not a sewer. Shout out to Pam, who is a wonderful person who is in my group that actually sews and she does it because it’s fun for her. And I tell her all the time, kill me now.
[11:52] Don’t make me do that. But let’s talk about patterns. What are the purposes behind a pattern? A pattern is, there are how many different patterns in the world? I couldn’t count how many different patterns there are, right? So we’re going to talk about caregiving with the analogy of patterns and making an item of clothing. And we’re going to look at dementia as being the pattern, The product of dementia or the product of putting the pattern together is the person living with dementia. And then the person who is putting it together, we can call the producer or the craftsman or the caregiver, right? And so we have this caregiving triad. There are three parts that have to happen. You have the what dementia is, dementia itself, the disease process, the condition. You have the person, and then you have the person who is the caregiver. So you have to have those three. Without something wrong, CHF, stroke, dementia, without a person who requires assistance, and without somebody who provides the assistance, we don’t have a caregiving triad. Those three things have to be there.
[13:07] I’ve started a new segment once a month. I’m inviting people into an opportunity that if you are open to or looking for a free one-on-one coaching experience where you sign up and you come on and we coach through one specific problem that you have, I’d love to invite you to reach out to me. I’m calling them a flight audit, a dementia flight audit. And next month is the first month I actually want to invite somebody from the community to sign up and be willing to be coached through a particular problem. We’ll come up with a goal for our time together, and we will come up with a solution for your specific problem. So if you are open to being on the podcast, if you want some free coaching so that you can see so that we can get you your own audit of your own situation, then please reach out to me via email at Lizette at thinkdifferentdementia.com. And I will schedule you for a one-on-one and we can audit your particular situation and you can get real-time help. So that’s an open invitation for you to sign up. Email me at lizette at thinkdifferentdementia.com.
Understanding the Pattern of Dementia
[14:37] So let’s talk about the pattern of dementia. And I’ve mentioned this in many of my other episodes. Dementia caregiving is dementia. The process of dementia is very predictable. The process The process of dementia is very, very predictable.
[14:58] I want you to think about how many different types of patterns to make clothing or to make something there are in the world. There are wedding dress patterns, there are shirts and there are pants and there are t-shirts and they’re all different and you can make a coat, but each one of these have a different pattern and you have to have the pattern in order to get the product. But we recognize what the product of each one of these patterns is going to be. And when we navigate making something using a pattern, if you’re really good at doing it, you know that following each step by step by step produces the best result, especially if you’re somebody like me who doesn’t sew. If I don’t follow those step-by-step results, steps I’m not going to get the result that I want to get from the pattern. But if I follow those steps, if I cut out the pattern, if I follow all of the steps of that specific pattern, the result is fairly predictable. I should be able to produce the item that I have set out to make, whether it be a shirt, whether it be a skirt, whatever it is. And so each one of the patterns may be different.
[16:26] The result of that pattern is going to be consistent when you follow that pattern. And I just want to encourage you today to remember that each person, Psalm 139 verse 14 says, I will give thanks to you for I I am fearfully and wonderfully made.
[16:49] Each person is fearfully and wonderfully made. And so that’s just as an encouragement for you today to consider that even though the person that you’re helping is experiencing this, they are still fearfully and wonderfully made, and so are you, dear Christian caregiver. So we know that we need to have the pattern of dementia. We have to have something that we are needing a person to be providing care for in order for us to need to have a caregiving journey.
[17:29] So the thing that I want you to take away from today is dementia does follow a fairly predictable path. It is called, you can go look up the framework retrogenesis, which literally means back to the beginning. And when you understand normal ways people develop and grow up from a baby all the way through to an adult, you can start to recognize the pattern that God has given us in his creation of a person who is getting closer to the end of their life. And I’ve mentioned this before in other podcasts that I’ve done. One of the things that I’ve started to realize or recognize is that when a person is going through an end-of-life situation like cancer or something like that, they frequently follow the same path.
[18:30] Pathway, very predictable pathway towards death that a person living with dementia goes through, the reality of it is very much condensed and shorter. So we don’t necessarily notice it as much. But I have a friend who passed away from bladder cancer a couple of years ago. And what I found fascinating is she was terminally ill from her diagnosis until when she passed away. way. She actually went through all of these stages that a person does, not the same type of stages as dementia, but she followed the same trajectory going towards meeting the Lord that a person with dementia does. She was able to walk and then she couldn’t walk anymore. She couldn’t sit up anymore. She was still thinking fine. And then the next day she was confused. And then a couple of days later, she was bedridden. She did the same. She followed the exact same trajectory. It was just much, much faster.
[19:32] So the Lord has given us patterns to our life in order for us to be able to recognize certain things are occurring. And for that, I am grateful because it allows us to prepare.
Recognizing the Predictable Path of Dementia
[19:48] It allows us to be able to know what we need to do. So the first leg of the stool is that there is a pattern to a dementia caregiving journey.
[20:01] The second part of the stool is what I’m calling the product of dimension. Please do not misunderstand me when I say the word product. I’m just talking in terms of if we’re using the analogy of making an item of clothing, then the product would be the piece of clothing that I have made with the pattern. So in this specific analogy, I want you to think about the person living with dementia as being the result or the product of the pattern that we’re putting together. And why this is important and how we’re going to put it together is because we are unique and fearfully and wonderfully made. We each have different backgrounds, different cultures.
[20:59] Each one of us is different. We have different personalities. We have different cognitive abilities innate to us. We have different strengths. Some of us are sporty. Some of us are nerdy. Some of us were born in a Navajo reservation. Some of us were born in Europe. Some of us were born in South Africa. We are all different. But our own unique, specific personal story, our specific life story, is part of the fabric of what makes us who we are. And every person’s fabric of their life is different, but we’re all created in the image of God. Our prior habits, our prior besetting sins, I will own. One of mine is anger, to be fair. Right before I started recording this podcast.
[21:55] I got super frustrated at the healthcare system because they were supposed to call me before they sent a home health physical therapist out to go see my mother, and they didn’t. And anger is my default setting. We all have these besetting sins, these things that we struggle with. Our own prior history may produce a specific result in the person living with dementia as part of the fabric and as part of the product that we then see related to dementia, the pattern of dementia. And when you understand the person who is living with dementia, when you best know their story, their history, their background, their everything, the better you are able to put together what’s frustrating, what’s difficult for them, why they may not be taking a shower. I’ll use myself as an example. I grew up in South Africa in the United States. We lived in Brazil. We lived in Sweden. But for a period of time in South Africa growing up, we didn’t really use showers. We used baths. I don’t remember the first time I took a shower, but I remember going.
[23:19] Growing up taking a bath, right? Everybody took a bath. We didn’t take showers. And so depending on whatever happens in my future, that might be an issue if you want to put me in a shower and my brain tells me showers aren’t a normal thing for me to do. So the more you know or understand that person, the more you can help to create a good product per se by taking the pattern of dementia and the fabric of the person so that you as the craftsman, as the producer of making this garment, completing this pattern, being the third leg of the stool of this pattern, is you as the caregiver or caretaker or the craftsman can help to put it all together for yourself. And when you are making or using a pattern, every one of us bring our unique strengths to the equation.
[24:29] I had a friend growing up, her name is Christine, and she could make anything thing without using a pattern. She was gifted and exceptional at being able to create and make things without even using a pattern. Now, that is not me, right? But when we are caregiving, when we are the caregiver of somebody living with dementia, we bring our unique strengths strengths to the table, to the end product, to what we are making. And caregivers bring their unique strengths to the caretaking equation. And when we as caregivers recognize that we have certain strengths and we have certain resistances to certain things, then we can ease our caregiving journey. When we recognize the patterns of the things that frustrate us in our caregiving journey, then we can start to implement plans and put things together to make it easier. So some people who are caregivers need to be able to take in as much information as they can and then prioritize that information so that they’re able to be an effective caregiver.
[25:57] Some caregivers need to be able to plan ahead first. They need to be able to make a checklist or have things that they can cross out and plan ahead for all of the different things that they need to do that are the tasks that they need to perform as the caregiver. Some caregivers like me need to be able to see the potential solutions that we can implement implement or that we can create in order for us to be an effective care partner or care person. And some people need to be able to put things together first. They may need to be able to have their hands on or do things with the person in order to feel like they are an effective caregiver. So when we bring our unique strengths and our unique abilities to our caregiving journey, journey than we are able to better serve the person that we are helping who is living with dementia.
Bringing Unique Strengths to Caregiving
[26:59] Because every single person is unique and different, but we all are created in the image of God and we are all very, we’re similar. We’re very similar, even though we are different. And I would encourage you today that if you are struggling because you cannot see the pattern, then hop on a call with me. Come to one of my dementia audits, my dementia care audit. I do a 30-minute free caregiving audit for you as a family caregiver to be able to help you analyze what is that one thing that is causing all of your stress. What’s that one thing? What’s the domino that we can knock over to make this journey easier? So I would encourage you, if you haven’t taken me up on one of the dementia care audits, the link is in the show notes. It’s a 30-minute free coaching episode or free coaching opportunity for you where you can come on, you can talk with me. It becomes a part of this podcast.
[28:15] It is nothing that we cannot, you don’t have to be on camera if you don’t want to be, you don’t have to use your own name if you don’t want to be, if you don’t want to use your own name, but it is an opportunity for you to actually dialogue with me, have a conversation with me related to you and your particular struggles so that we can turn your struggle into a strength is a.
[28:44] Strength-based caregiver instead of a struggling caregiver. So if you’re open to that, the link is in the show notes, or you can message me the word audit, A-U-I-D-T, just the word audit on Facebook Messenger or Instagram, and you will get the link to be able to sign up for one of these episodes, these free coaching sessions. And I do hope you take me up on it. Today was definitely a little bit more challenging for me because like I said, one of my besetting sins is anger and this situation got under my skin.
[29:25] And so I will be working on my own triad of caregiving and working on myself as the caregiver to truly work on not getting so frustrated, not getting myself bent out of shape. So I just want to encourage you guys to know that I am human.
Working on the Triad of Caregiving
[29:46] I make mistakes. I’m a family caregiver. There are things that are frustrating, but as we’re navigating this journey together, purpose that I have for you is that you see that we can figure out a way to make it easier for ourselves by constantly reiterating and changing and working on our own thinking processes, putting the three legs of the stool in place, understanding what dementia is, the pattern of dementia, understanding what the the outcome is or the product that we, you know, the person living with dementia and then putting herself as the caregiver into the equation and finding a harmony and a balance with the three of these things. Because without each one of those, you do not have a caregiving journey. So I encourage you.
[30:47] To reach out to me. If you haven’t joined my Facebook group, I have a free Facebook group community. It is by invitation only. So this is your invitation to join. It’s called Christian Dementia Caregiving. So go check that out, join the group, and you can hang out with me there. Continue to come back to this podcast, share it with somebody that you love, share it with a family member or somebody at church that you know that might be helping someone else with dementia. If you haven’t left me a review on Apple Podcasts, go ahead and do that too. Those are ways that you can give back to me. And as I end all of my episodes, may the Lord bless you and keep you. And please come back again to the next episode. Today might not have been one of my best episodes, But for the most part, I pour a lot of my energy into putting these together. And I really do want to serve you as fully as I can. So check out the next episode and I will see you back next time.
