This is the Whole Care Network. Music Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Have you ever felt overwhelmed because you can't find the information you need or you're just drowning in so many conflicting resources? You don't know what to do with it all. Nancy and I are discussing a step-by-step roadmap that points you to the resources to prioritize in the middle of our dementia caregiving journey. We began actually this series in the beginning. So if you haven't listened to the previous episodes that talked about the beginning, it may be helpful for you to listen to them first. We discussed this first stage in the beginning of the dementia family caregiving journey. In podcast episode 43, we covered steps one through six. Then in episode 44, we talked about steps seven through ten. In this episode, we're in the messy middle now and we're talking about steps 11 through 17. Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Welcome back to our series on the Navigating Dementia Caregiver Roadmap. In these episodes, we are talking about the steps that we believe will help you get through your dementia caregiving journey. And we're sequencing those in the three stages of dementia caregiving that Sue and I've defined. So before we get too far down the path, let's first go back and talk about what those stages of dementia caregiving are. So, Sue, why don't you get us up to speed? All right. When Nancy and I first talked about our caregiving journeys, one of the things that we recognized is that we created three distinct stages. And these are stages of our caregiving journey. These have nothing to do with whether you call them phases or stages or steps or whatever of the dementia. This is targeted for us as caregivers. And what we recognized is the first stage we call in the beginning. And this is when our loved one is still able to be sometimes fully independent or somewhat independent. Three stages start stage one and we called it in the beginning because it is the beginning of our journey. It's when our loved one is still fully independent or mostly independent and the support we're providing is pretty much behind the scenes. Then when they kind of start transitioning and it becomes a little bit more challenging for them to get things done and we need to begin to assert control. If we call that the messy middle because it is a lot of the things they don't want help with yet. Sometimes they're really struggling. They don't know what to do. So they're angry with it. They know they've got something going on. They know they've got a diagnosis. They're struggling with it. It's just a messy stage. And in this particular area, there are things that they're not going to be able to manage on their own. And yet what we want to be able to do is in every opportunity we have to still have them maintain their dignity and independence as much as possible while in some places going ahead and asserting that control. And then we recognized stage three and we call stage three later on. This is when we are now fully responsible for their care and safety. Let's talk for just a couple minutes about what this messy middle really does look like. We talk about asserting control. So they still think they can do most things on their own, but we're needing to get more involved because they're either missing something. They're struggling with something. They get frustrated with it. They don't want us to help. And they're just all over the place with it. And what it's important for us to do right in this stage is a lot of observing and a lot of adjusting. It's us staying fully present in the moment with them where they are in their moment. Not where we wish they were, not where we want them to be, but where are they in the moment? And what would independence for them in this place look like? And what can we do to help them where they are in this moment? Another part of the messy middle is there were days with both my dad and my husband when we were in the messy middle. There were days where you didn't think they had dementia. And then there were days that just sucked the wind right out of me. And sometimes that happened both in the same day. So we just really don't know. So it's important for us to stay present to exactly where they are. And part of that is looking at things from their perspective, maintaining empathy for what they're going through and connecting with this challenging stage. And it's also because we talked about caregiving being two people. It's them and us. We're going through a range of emotions with this as well. We've got the wind just knocked right out of us when there's something that's just so shocking that they don't have access to anymore. We're starting to have, when we assert more control, it means more responsibility for us. So it's becoming more exhausting and energy draining for us as well. So it's us keeping fully aware of where we are and being present in our moments as well. So in this episode, we're going to talk about the messy middle. And we've broken the messy middle, the steps that we recommend you go through in the messy middle down into two sections. The first set of steps are when you begin to assert control. Those are steps 11 through 14. And then the second set of steps are when you really start to realize you need more support. And those are steps 15 through 17. Now, soon our big believers in education, we believe the more you know, the more educated you are, the more confident you're going to be, the more patient of a caregiver you're going to be, and the more peace of mind you're going to have. And it's our goal for you to learn faster and more easily than we did. So let's start with step 11. Step 11 is to focus on safety. Now, we already extracted one part of safety and that was step 10. And that is to evaluate driving. Now, we put that in the, it's the last step in the beginning. And that's because it really can't wait. So we talk a lot about that in the beginning, but there's four other types of safety that we want to raise your awareness to. First, can they be left at home alone? Second, dealing with medication. Third, home safety. And fourth, wandering. So one of the best ways that we believe to educate yourself is to listen to the podcast we have on these four topics. Home Alone is our episode number six. There's also a blog, blog number six, so you can just read about it if you prefer to do that instead of listen to a podcast. And in that episode, we discussed really four deal breakers that you need to think through on whether someone can continue to live at home alone. And those are, can they take their medication successfully? Second one, can they use the phone? They need to be able to contact someone if there's an emergency or if there's a problem. So can they use the phone? Can they feed and hydrate themselves successfully? And fourth, can they safely use appliances? Now, all of those are really important things and you need to be observing and adjusting and evaluating. But if they can't do any one of those things, they really should not be living at home alone anymore. Huge, huge for that. The second one, and we talk about is medication and we covered medication in episode 20 where we were talking about strategies to just really safely manage medication. The place to start with that is doing a medication audit. What are the medications they're taking? What are they for? How frequently do they take them? How do they take them and be their advocate? The next point would be being their advocate and talking with the doctor about adjustments that may need to be made. If there were getting into that messy middle, are there medications that could be combined? Is there a different way to be taking them? And what are the things that we can do to simplify that process for them? And then another thing we had talked about in the beginning was these powers of attorney, making sure that that medical power of attorney has been established. Because as we begin to assert more control, we're going to need to be able to talk to the doctor. We're going to need to be able to talk to the pharmacist. We're going to need to be able to talk to people that if we don't have that medical power of attorney, we won't have permission to be doing that. And then effectively evaluating them taking their medication. And this is an example where you may add cameras to see if they're really taking them. I'll give you a quick story. There was some friends of ours and they had installed the camera to make sure their mom was taking the pills. And she would take the pills. Now her eyesight wasn't really great, but they had the system all set together. She's taking the pills and she would put them in the little container and then she would go do something else and she would come back and then she would wipe up the counter and wipe them into the trash because she thought they were crumbs or something that was left over. So she wasn't actually, so they were leaving the pill. So if you hadn't had a camera, you would think she was taking them, but she was actually then, you know, throwing them away. So you want to make sure they're actually physically able to be going through the entire process of taking them. And that no matter what your distribution method is, they can use it. Then the next one that we talk about is home safety and episode six. And we cover a variety of different things in episode six with home safety, but just four of these home safety is beginning to you walk through the house like you would if you had a child and you begin child proofing any of the things that could potentially cause them harm. Door knob covers, gates, taking the rugs away, any fall items, any things that they could hurt themselves with, knives, adjusting the way switches are, knobs for things like the oven or the stove or things like that, and then adjusting lighting. So there are a variety of different kinds of things, but those are really key ones that are important to be evaluating in this messy middle stage because they are still moving around and walking around. Well, speaking of that, actually, let's talk about the last one. How about that for a lead in Nancy? Yeah, let's talk about the last one, which is wandering. So in episode four, we talk about wandering. Most people think of wandering as their loved ones snuck away outside when no one was looking. And yes, that is the most typical concern for wandering. And we both had that happen. And we both had that happen. In that episode, we talk about wandering outside and how to prevent it and how to manage it if it does happen. But then there's also, we also talk about wandering inside because as your loved one gets into this messy middle, they get, I used to call it, he's very busy. They wander around, wander around, wander around. They just, they've run out of things to do and they're fidgety. And so we talk about how to handle wandering inside. And then the last kind of wandering is wandering at night. And this is a huge thing. So you want to understand what strategies you can execute about how to manage wandering at night. So those are all covered in the wandering episode as well as in the wandering block. Those are excellent. And then let's go to step 12, which is one of my favorites. We talk about in the caregiving journey, we have two people to care for. We have our care receiver and we have us. And when we get into that messy middle, it is so much easier for us to shave off a little bit here and a little bit there because our care receiver needs more of us. So we're like, I like, I don't need to go to the gym every day. I don't need to do this. So we keep shaving off a little self care, self care here. So the podcast episode 27 where we talk about the realities of caregiver self care. We really talk in detail about prioritizing self care. And it is something that we started in the beginning so you can get into the rhythm of it, the responsibility of it, the understanding of it, the respect of it. Then in here, when it's so tempting, so tempting to take things off that list, it's giving yourself permission to practice self care. And then to get outside of thinking what we used to think about what self care was, you know, self care may have been okay. Well, I'm going to go to lunch with my girlfriends and that was really what self care was. This is where we really evaluate because if we've got one minute, what could we do with self care in one minute? What could we do in five minutes or an hour? But what is really self care for us in this stage? What we have more emotional self care we need to have? So what do we really do? And then just as you prioritize their care, prioritize your own. Make sure when you're laying out the day and the things that you're going to do that you put you in that calendar and you put your self care in that calendar. It's absolutely, everybody's important in what you're doing for them. And then this one is so tough. It's so hard when we're in the middle of something to recognize what we're really doing. Give yourself both grace and credit. It's a perfectly imperfect journey in the messy middle. There's a lot that's not going to go right. But give yourself credit for, you know, you're trying, you're doing these things and give yourself grace because when it doesn't work right, you've got to keep going because you've ultimately got to get the job done. Along those same lines. So you brought up the fact that, you know, in the messy middle, it gets really hard. So a lot of what gets hard is what we want to cover and you want to get educated on in step 13. And these are the activities of daily living. You'll see sometimes ADLs. That's what that means. And this is when their ability to care for themselves starts to slowly fall apart. So we talk about these activities of daily living in different podcast episodes, which I'll give you the numbers in a minute. And we talk in each one of these about what the early signs are so that you start to know this one starting to fall apart a little bit and then how it's going to progress. So you can get mentally prepared for what direction it's going in. So prepare yourself with incontinence episode number nine, which is preparing for incontinence. It's a good one to listen to to kind of get an idea of what you could do early before it really gets moving. Bathing and dressing is episode 14. Personal care. That's shaving, cutting fingernails, those sorts of things. That's episode 15. And eating and drinking is episode 16. So activities of daily living when they start to unwind and it feels like they start to unwind all at once. And you know, there doesn't it's not just one goes. Then when one starts going, most of them start to go in some way together. Every one of those feels like a punch in the gut, at least initially. You're just you send them to go to the bedroom to get dressed. It's time to go to lunch. Why don't you run in and get dressed? Out they come in their bathrobe and they're all proud. They've gotten dressed and you're shocked and horrified. Sorry. I was just going back in my memory bank of some of some of the things that came out. Yes. Yeah, you're shocked and horrified and you're broken hearted. Yeah, not because they did it wrong, but because you just got punched in the gut. Oh my goodness. They don't know how to get dressed anymore or you stand there while you're brushing your teeth and you're waiting on them to brush their teeth. They don't know how to put the toothpaste on the toothbrush anymore or they're eating and while they're eating, they eat a couple of bites and then they stop and you think, oh, well, they're they're through eating and this is amazing. They've hardly eaten anything. You have to realize that they have forgotten how to eat. They need to be restarted. They've forgotten what the utensil is and you need to restart them. So understanding how to progress through the activities of daily living and where they start and recognize it when it's starting and how you can help and what's coming so that you don't leave it to chance. I think is a really good way to educate yourself. You'll have more confidence. I remember we said when you have more confidence, you have more patience. When you have more patience and confidence, you have more peace of mind. And that leads us to step 14, which is creating a care plan. So what we've recognized is we are asserting more control so we have more things to do. So it's important to kind of put together a plan of what needs to be done. And one of the first things to do is to begin with a family emergency plan. And we talk about that in podcast episode 33, which is how to create the care plan. What happens if something happens to you? What happens if something happens to them? What happens if you need to be gone away? So the kinds of things that you would put into an emergency plan. And so start out very simply. Start out with some of the basic things that you would need to do. Outline their daily routines and what their preferences are. Outline the things that if someone would need to come in and care for them for an hour or half a day or a day or overnight or something. Some of the things that would be very helpful. And then if there's an emergency, one of the things we talked about, there are two people in this. It's you and it's them. When we're talking about the family emergency plan, something could happen to you or something could happen to them. So you want the emergency plan to be also what if something happens to you? What is somebody going to be able to do to be coming in to care for them? And the same thing if something happens to them. So we're going to really be looking at that and identifying who the key contacts are in the document. So we go through that in a lot of detail. And of course, as we mentioned, there's a blog post with everything. So that's 33. The thing about the messy middle that we're talking about here is the messy middle starts with you need to you start. See things just you have to start a starting more control. Things like the activities of daily living start to diminish and they just can't do it by themselves anymore. And that's how the messy middle starts. So those are the first steps that we recommended. But as the messy middle progresses, there's a point where you're going to realize. I need more support. And that's when you're ready for these second steps. We're going to talk about here, which is steps 15 through 17. Now. The first part of this section, step 15 is about dementia day programs. If you have not started using dementia day programs yet. Now's the time. We talked about investigating them earlier, and you may have started to use them earlier, which would be great. But if you haven't started, you need help. And that's the most basic way to get help is to leverage dementia day programs. And they need to be involved in more activities that engage them where they're at and have them in community that they can relate to. And it's harder to do that when we're the ones providing the care. It's easier for them to be in a program where there are other people who are in the diagnosis in a similar place. And it's also very important for us to be able to step away a little bit because we're having to be involved more. Right. Because you're exhausted. And yes, they may need more activity, but you're, you're, you're full, right? You're full. You're doing everything. And so, and people will tell you, oh, well, they need more activity to keep them busy. And you're, you're like, I can barely survive what's happening now. So leverage other people. We're going to start with the basics of dementia day programs. However, 16 is it's time to also start thinking about professional help, planning it and understanding what's available. So you really need to begin evaluating professional help. And there's two major things that we want to cover here. First one is evaluate communities, whether you think you're going to need one or not. That's not really what we're suggesting here. You need to evaluate them. And then, hey, if you never use a community, awesome. But you're a choice because you've evaluated it. You've thought through it and you've identified whether it's the right choice or not. Exactly. So you, I can, my husband stayed at home through his entire journey, but I evaluated communities. I stayed on top of communities. I knew what was available because you just don't know what's going to happen. And you really don't want to start with ground zero. And then of course there's professional help. The good news is we've got a podcast on both these topics, podcast on evaluating communities or trying to figure out whether they should stay at home or go into a community and what's available, what the options are there. That's episode 28. So that's a good one. And then we'll talk in a second about episode 32, which is about how to hire a paid caregiver. There's a lot going on in that. And so one of the things that they have that are absolutely amazing, I've benefited from, I know so many other people who have, is there are organizations that can help. And they're free for us to use. And they have great guides. They know all the communities. They know the different kinds of resources. They know the way the financial structures are. They have the answers to the questions we don't know to ask. They know how to compare the things that we don't know. And a way that you can find these is you go online and in the search engine, you search for senior care advisor, and then you put in your area. And these they have, and I have learned this. I've talked to the ones that I've known. These are also available, not everywhere in the world, but in many countries of the world, they have this kind of a service. So look at the different options for yourself. You can go to the community resource finder that the Alzheimer's Association and AARP have. And the link for that is going to be in our show notes and in our blog. Right. And at the community finder, you can look for, in your area, you can look for communities and you can look for home help so that you can look for each. So they'll that that's at least a place to go search if you're going to do it on your own and not leverage one of these senior care advisors. All right, our last step in the messy middle is to continue your education because that's what we believe will help you build more confidence. So in this education, the savvy caregiver course, which you recommended back in the beginning steps has an advanced course. And that really covers some of the more messy parts of your journey. And it will help you help you be even more prepared as you get into the messy middle. So check out the savvy caregiver advanced course. Another part of the education is one of the things that's common for many types of dementia is delusions. And so if and when delusions come, you want to be prepared. We created podcast episode number 23, which is called delusions. And between that and the blog, they talk about getting in the right frame of mind. This can be really frightening. And you also in your rational mind, you're trying to help them and they're not in a rational mind. So it gets really frustrating. So it's how do you help validate what they're going through, which whatever motion they're in, validate and reassure them and know how to meet them where they're at. And then something that's very important that we talk about so much through the caregiving journey is tell them the truth they need to hear. If they're in the middle of a delusion and you're saying, no, no, no, no, no, that's not the way it is. That's not the way it is. They can't hear and process that. So meet them where they're at. Tell them the truth they need to hear in that moment that's going to reassure them that can calm them and then distract, shift the environment, do things that can be changing it. And then when you get through with that, kind of write it down, debrief it and document what happened so that not only are you more aware and you can be asking questions in a support group or doing other things. If you bring someone in to provide care, you can be helping them know what you did that did or didn't work. And again, we're talking about both people in here. Delusions can be very, very frightening and overwhelming for us. So care for yourself. Observe yourself when you're going through this. Reach out for support to process this for yourself. Yes, delusions are that episode, in my opinion, is a must listen to because you would much rather have listened to that episode before the first delusion happens than deal with that delusion and have no clue what to do. Also in this sort of messy middle later stage set of education is once incontinence actually begins. That is episode 10. We actually have five episodes on incontinence. One is how to prepare for incontinence. We talked about that in ADLs. This one, incontinence begins. There are three additional episodes around incontinence that are post this one that once you get into it, you can decide if those are episodes you want to listen to. The final episode in our series is going to be focusing on that third stage, the later on stage where we are now in full control of their health and their safety and managing it with other people but taking care of that. And those are going to be steps 18 through 20. So let's summarize what we covered today. Today we covered the messy middle, which has two sections. The first section is you're beginning to assert control and we want you to go through those steps 11 through 14. And then it's time you recognize it's time for more support. Those are steps 15 through 17. Now let me tell you what those steps are real quick review them for you. Step 11 was focus on state safety. Remember step 10 was driving specifically. So these are other safety areas. Step 12 continue to prioritize your self care. Very important. Educate yourself on activities of daily living often called ADLs. Create a care plan at a minimum create a family emergency plan. Start or increase leveraging dementia or adult day programs. Start thinking about professional help because you cannot do this on your own and and things will get beyond what your family and friends can do to help as well. And then continue your education so that you're ready to continue through the end of the messy middle process. Now if you like this podcast, please subscribe to it. Follow it. The links will be in the show notes for every resource that we talked about in this podcast as well as in the navigating dementia caregiving guide. So there are going to be links everywhere and there'll be links in the blog as well. We really appreciate it. We know this journey can be very overwhelming. We want you to know you're not alone. We're all on this journey together. Yes, we are.
