Additional Resources Mentioned
Takeaways
Step 11: Focus on safety.
Step 12: Continue to prioritize your self-care.
Step 13: Educate yourself on the activities of daily living.
Step 14: Create a care plan. At a minimum, a family emergency plan.
Read More in This Blog
Full Episode Transcript
Nancy Treaster
Are you inserting yourself more and more into the activities of daily living for your loved one who’s living with dementia? Are you struggling to find the knowledge and resources you need to manage? Have you listened to the first 10 steps of the Navigating Dementia Caregiving Roadmap.
This episode covers steps 11 through 14 of the 20-step Navigating Dementia Caregiving Roadmap. We first launched the roadmap in August of 2025, and we’re now on version 4. The good news is the most recent roadmap is always available online. Just go to the caregiversjourney.org, click on the icon Caregiving Roadmap, and it’ll take you to the page that’s interactive with all 20 steps. Literally you click on a number and up come the resources with hot links to help you get through that step.
Now, also available on that Caregiving Roadmap page is a link to a downloadable digital guide. All of our resources are free, so you can download it and you can link to the resources based on your own personal copy. All the hot links are in the downloadable guide. And some people like to print it just because they like to have a printed copy in their hands and refer back to it. So we encourage you to do that if that’s what you want to do.
Also, on that same page is a self-assessment you can take. So you click on the self-assessment, it’ll ask you five questions, and it will give you an idea of where we think you are in your caregiving journey. Now, no matter where the assessment says you are, we encourage you to use your judgment and also go back and look at the previous steps to make sure you haven’t missed anything important.
Before we start, let’s do a quick overview of the three stages of dementia caregiving. Now it’s important to know we’re not talking about stages of dementia here. We’re talking about stages of dementia caregiving. And the roadmap steps are directly related to the stage of dementia caregiving you’re in. So we make recommendations of what you focus on now based on where you are in your caregiving journey.
The three stages are in the beginning. In the beginning is pretty much right after the diagnosis. And the first six steps of in the beginning, we want you to really, as much as you possibly can, go hand in hand with your loved one who’s been diagnosed with dementia and get through these steps. These steps are things like getting legal documents updated, understanding the financial situation, finding support groups, all of those types of things.
Also, in the beginning are steps seven through 10. Most of these are steps you take on your own as a caregiver. Today we’re going to talk about the messy middle. And the messy middle is really when you begin to start asserting more control and you start to inject yourself into a lot of those activities of daily living. And that’s when it gets messy. We’re going to talk a little bit more about that in a minute.
The third stage is later on. And this is really when you’re managing all aspects of your loved one’s care. They’ve relinquished control and you pretty much have the mechanics of caregiving down at this point. Podcast 66 is one worth listening to.
It does cover the stages of dementia caregiving in a lot more detail if you want to listen and judge where you think you are. Also, podcast number 68 covers steps one through six, and podcast number 71 covers steps seven through ten. If you haven’t had a chance to listen to those, we suggest you do.
No matter where you are in your caregiving journey, what stage you think you’re in, we do want you to go back and look at the steps, at least in the previous stages, to make sure you don’t miss anything important. So go back and take a peek.
Let’s talk a little bit about the messy middle right now. So in the messy middle, you’re beginning to assert control, as I said, and that’s when it gets messy. Your loved one is starting to be frustrated because they’re not always sure what to do. And sometimes they’re even scared because they don’t know what to do. Of course, you can see they’re struggling a bit, so you inject yourself more and more. We talk about in-the-beginning not to do that – to give them as much dignity and independence as you can. But there’s a point in the journey where you do have to inject yourself more and more to help them get bathed, get dressed, brush their teeth. All of the activities of daily living. And because of that, you get, well, my best description of it is a little bossy. And so they’re frustrated, even scared, and you’re being bossy. And that’s why it gets messy.
And we have to continuously observe and adjust in the messy middle. And please try to keep your empathy because this is a really difficult time for them, even though it’s a really difficult time for you as well.
So let’s move to step eleven, which is focus on safety.
When we talk about safety, one of the things that we did in the beginning in step 10 is we pulled one of the safety steps out of the messy middle and moved it into the beginning, and that’s driving. So driving is clearly a safety issue, but it needs to be addressed very early in the journey. If you wait until things are getting messy, it’s probably already too late for driving. So we cover in step 10. So please listen to that podcast number 71 if you want to hear more about driving.
What feel like you need to think through when it comes to safety is if your loved one is living alone, can they continue to live at home alone?
Sue and I cover in the Home Alone podcast number six what we call the deal breakers. What are things that, if they can’t do them, they cannot live alone? And I’ll give you a couple of examples. If they can’t successfully get themselves fed, meaning get their food out, eat it, and successfully maintain their weight and get themselves fed, that’s a deal breaker. If they can’t successfully take their medication, if they can’t communicate and use the phone, if there’s an emergency, they can’t call 911 and use the phone. Those are some examples of your loved one really should not be living at home alone or even left at home alone for very long because those are deal breakers.
Another big safety issue is medication. And this is really being able to take medication successfully. But also part of that is success is being able to take it safely because if I take three days of medication in a row and I’m on a kind of medication where tripling it is going to potentially cause me a major health issue, then we need to be very careful that we’re managing medications in a very tight way. And that’s what that medication management podcast number 20 is about. It’s helping you understand how to manage medication very closely.
Home safety, another example. When you’re evaluating can someone be left at home alone, the other side of that is if they can’t be left at home alone. Are they safe in that particular house even? Even if you get caregivers, can they stay in that home? How many steps is it to get to their bedroom? Are there places in the house where you need to take a look at the knives or on the kitchen counter? They need to be put somewhere in a locked cabinet. Those are the kind of things we discuss in home safety. What do you need to adjust in either their home or in a home you’re going to move them into in order for it to be safe.
Another safety topic is wandering. You may think of wandering as something that happens when someone wanders outside. And yes, that is a type of wandering, but they also wander in the house. And that can cause safety issues as well. So wandering we cover in podcast number four, and we talk about how to manage someone or control someone’s ability to wander and get out of the house without you knowing it. But we also talk about things you can do to protect inside the home when your person is wandering around inside the home. And to be fair, by the time you get to this point, a lot of people are very fidgety and they need things there, they need things to do. And so there’s a lot of danger wandering around inside the home. There’s some overlap with that podcast number 70 on home safety when it comes to wandering.
So, step 11, first part of the messy middle, is we want to get ahead of safety issues. We don’t want to wait till these are challenges. We want to get ahead of them. So we’re gonna educate ourselves through these podcasts. If you don’t choose to listen to a podcast, most of our podcasts are 25 minutes or less. All of these are 20 to 25 minutes. You can also read the exact same information in a blog. So if Home Alone is podcast number six, blog number six covers the exact same information and so on. So check that out in terms of reading versus listening to podcasts.
Let’s move on to step 12. Step 12 is to continue to prioritize self-care.
We talk about self-care in the beginning, and we want to set a solid foundation in those first 10 steps for your caregiving journey. And a good part of creating that solid foundation is creating a solid foundation for support for you, the caregiver. Now, that can be support by having friends and family help you. That’s a kind of support so that you can get some relief, take some time off.
Go to the gym, go to the grocery store, go to your own doctor’s appointments. So friends and family support we talk about in step eight, but also finding a support group, we talk about in step four. So finding other people that you can talk to about what’s going on in your situation, people who understand what’s going on in your situation, maybe even people who have advice on how to help you. But self-care itself is not something that can be ignored.
When someone gets a diagnosis of dementia, there are two people who need to be cared for. The person living with dementia, that’s obvious, and you, the primary caregiver. Because if you’re running on fumes, you can’t be a successful caregiver for someone living with dementia. We all know this is a long journey, it’s not a short one.
So we bring you back to that in the messy middle because now the mechanics of caregiving in the messy middle are really starting to take hold. There are more and more and more things to do, and self-care cannot get pushed out of the way here. So we have a podcast, number 27, on the realities of self-care, and a blog on that. And we collaborated with a friend of ours, the Happy Healthy Caregiver, on that podcast. She focuses on self-care a hundred percent. That’s all she does in her business. So we used her as an expert to make sure we covered self-care in the best possible way.
Let’s move on to step 13. Educate yourself on activities of daily living. Now, as I mentioned, what’s going to happen, and the reason we’re doing this early in the messy middle is you’re going to see some early signs that the activities of daily living are starting to erode. Example, you’re going to tell your loved one, it’s time to go to lunch. Why don’t you go in and get dressed? And they’re gonna come out with just a bathrobe on and they’re gonna be very proud that they got dressed. You and I both know that that’s a sign things are starting to get difficult for them in terms of dressing, but they don’t know that. So you have to find a way to slowly but surely insert yourself into the dressing process.
Each activity of daily living that we’re going to talk about in step 13, we take you from what’s the earliest, earliest sign something’s going wrong in this activity of daily living to how it progresses through the entire journey. So to the point in the end where you’re dressing them. And so each podcast covers that in effectively 25 minutes. So we speed you through the process, but we want you to understand how it’s going to progress and where it starts. And how do you get prepared? You get prepared by listening to these podcasts or reading these blogs.
So podcast number nine and blog number nine is about preparing for incontinence. Incontinence will come, but there’s some really early signs that let you know it’s getting ready to happen and some ways you can help manage or support your person’s independence and dignity as incontinence begins to show itself. So we want to make sure we protect their dignity as much as possible and there’s nothing less dignified than incontinence. And so we talk you through some ways to prepare for incontinence so you can help protect their dignity.
The next topic we’re going to talk about is bathing and dressing. I’ve already given you some examples of that. Where it begins, what’s some early signs that they’re struggling, and then of course all the way through to the end. But what are some ways you can help them protect their independence and dignity as you insert yourself more into the process?
The third topic is personal care. Here we’re talking about brushing your teeth, cutting fingernails, cutting hair. What are ways to get through those personal care activities in a way that’s as dignified and calm as possible. Here’s a good example. So I called Sue and I said, Sue, help me, I am trying to cut his fingernails and he’s having none of it. And she said, Well, are you trying to cut them all at one time? I was like, Well, of course I am. Isn’t that how you cut fingernails? And she said, Stop, stop. Cut however many you can get cut. If you get one cut today, an hour from now you can try again. Two hours from now, maybe you try again, or wait till tomorrow. Or you get two cut today, you get two cut tomorrow, you get two cut the next day. It doesn’t matter. It’s okay. So those are the kinds of things we talk about in personal care. How to approach someone when you’re trying to cut their hair, how to approach someone when you’re trying to cut their fingernails, how brushing your teeth progresses and how do you help them through that process?
Podcast number 16 is eating and drinking. And this really talks you through how you can begin to see that they’re struggling. I find a lot of people at the beginning of eating and drinking activity struggles don’t recognize it. They think their loved one is just eating less. And while that might be true, there’s just as good a possibility that they’ve forgotten how to eat or they’ve forgotten what comes next, or they don’t know how to use the utensil correctly. So you need to understand where you need to prompt to ensure that they are eating as much as they possibly can. So prompting them, we talk you through that in the eating and drinking episode.
Activities of daily living, we want you to once again listen to these early in the messy middle because these are things we’re going to walk you through how they progress over time. So you’re ready, you’re prepared after you listen to the podcasts in step 13.
Step 14 is to create a care plan. And by that we mean at a minimum a family emergency plan. There are care plans that you can create that are extensive. Sue created care plans in binders in books. And if your loved one lives in a care community, that’s probably a good place to have it because conceptually they’re not going onto your Google Drive or sharing an app with you. But there are apps out there that you can create care plans on. Some people put their care plans out on a shared drive. The most important part now is that we’re in the messy middle and the activities of daily living need a lot of support. What if something happens to you? How will someone take care of your loved one in a way that they’re used to and comfortable with? Because one of the things we want to do is we want to help them eat in a way that they’re used to eating. So uses the example of her dad who did not like his food to touch. Well when they started having to feed him and help feed him, they respected that. That’s what in this world and these days you hear call person-centered care. Well how is someone gonna provide person centered care for your loved one if they don’t know what that looks like. So create a care plan, at a minimum a family emergency plan. So if something happens to you, people know where to go to find the caregivers that you use, what are their telephone numbers, etcetera.
Let’s summarize. In this episode, we covered steps 11 through 14 of the navigating dementia caregiving roadmap. These steps are all in the messy middle.
Step 11, focus on safety.
Step 12, continue to prioritize your self-care.
Step 13, educate yourself on the activities of daily living.
And step 14, create a care plan. At a minimum, a family emergency plan.
If you have tips on these topics, please go to our Facebook page or Instagram page. The links are in the podcast description and let others know the good ideas that you have. Every podcast has a matching blog, so find the number of this podcast, go to the caregiversjourney.org, and you can find the blog with the same number. We’ve effectively written the notes for you in that blog.
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