Additional Resources Mentioned
Messy Middle
First Steps – You recognize it’s time to assert more control
- Focus on safety.
- Listen to these podcasts or read these blogs.
- Home Alone – Hear about the deal breakers for living home alone:
- Medication – Understand strategies to safely manage medication:
- Home Safety – Find approaches to the basics of home safety:
- Wandering – Learn ways to manage three types of wandering: outside, inside and during the night.
- Continue to prioritize your self-care.
- Educate yourself on activities of daily living (ADLs).
- Prepare for changes in your loved ones ability to manage their ADLs.
- Listen to these podcasts or read these blogs on activities of daily living:
14.Create a Care Plan – at minimum a Family Emergency Plan.
Messy Middle – Continued
Second Steps – It’s time for more support
- Start or increase leveraging dementia/adult day programs.
- Community resource finder:
- Start thinking about professional help.
- Educate yourself:
- Evaluate continuing care communities (even if you never plan to use one) just in case.
- Understand the types of paid caregivers:
- Find an organization to help. Search online: ‘Senior Care Advisor’ + ‘your area’.
- Look for options yourself. Go to the Community Resource Finder sponsored by the Alzheimer’s Association and AARP.
- Continue your education.
Takeaways
The Three Stages of the Dementia Caregiving Journey
- In the Beginning – Your loved one receives a diagnosis.
- You are the caregiver for TWO people – and you have equal responsibility to both! You instinctively know one is your loved one, but who is the second one? It’s you!
- Your caregiving goal for both of you is keeping you safe and comfortable.
- For your care receiver living with dementia, keep front and center helping them maintain as much dignity and independence as possible.
- Your natural instincts will pull you to take control to protect them.This can be counter to dignity and independence. At this point, as the primary caregiver, your role is providing most of your support in the background.
- The time will come when you will need to take more control. Be patient and let it come naturally.
- You may begin grieving losses along the way – some minor, some more significant. We call this ‘drip grief’. It’s still grief.
- The Messy Middle – You begin asserting control; this is when it gets messy!
- Your care receiver still thinks they can do most things while you’re getting more involved, and this adds to their frustration.
- There’s a lot of observing and adjusting while helping them maintain their independence.
- Your loved one is frustrated because they aren’t sure what to do. Sometimes, they’re also scared.
- It’s important to look at things from their perspective, maintaining empathy and connection during this challenging stage.
- Later On – You are managing all aspects of their care.
- Caregiving becomes easier in many ways at this stage – and harder in others.
- Be aware of your ongoing grief (sometimes called ‘anticipatory grief’).
- Prioritize self-care and reach out for support.
Read More in This Blog here
Full Episode Transcript
Sue Ryan
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 second set of steps and resources to prioritize in the middle of our dementia caregiving journey. If you haven’t listened to the previous episodes, it may be helpful 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, kept, then in episode 44, we talked about steps seven through 10. Now we’re moving into that messy middle and we’re talking about steps 11 through 17.
Nancy Treaster
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 have 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?
Sue Ryan
All right, when Nancy and I first talked about our caregiving journeys, one of the things that we recognized is that we went through three distinct stages. Stage one, we call ‘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. So 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’re 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. where they still think they could 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, they’re just all over the place with it. 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?
Nancy Treaster
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 Sue and I are 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.
Nancy Treaster
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.
Sue Ryan
And Nancy, one of the things you were saying, there are a lot of different areas about safety and we talk about a lot of variety, different kinds of things. One of the things that in this area that we’re talking about, we’re talking about the four of these, these aren’t the only ones there are, but these are good ones in the messy middle. These are good ones for us to prioritize.
Nancy Treaster
I think that’s exactly right. We’re talking about prioritizing, educating yourself about how to manage safety. So one of the best ways that we believe to educate ourselves 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 listening to a podcast. And in that episode, we discuss 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, 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.
Sue Ryan
The second one 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 we’re getting into that messy middle, are there medications that could be combined? Is there a different way to take them? And what are the things that we can do to simplify that process for them with it if it’s something that we still feel confident about or getting in the equipment? 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 were 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 there were crumbs or something that was left over. So she wasn’t actually, so they were leaving the pill. 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, 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, one of those is so very valuable is the file of life. And in that episode is the link to where you can get it. And what it is, is that if emergency medical teams need to come to the home, they’ve got a sign on the window that lets you know that there’s a file of life, which is going to be on the refrigerator and going to have very valuable information about the loved one. And then home safety begins, you walk through the house like you would if you had a child and you begin childproofing any of the things that could potentially cause them harm. Doorknob 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 if they’re going to be going up or downstairs or into another room, making sure that they don’t have shadows and things like that. So there are a variety of different kinds of things, but those are really key ones that are important to be evaluated in this messy middle stage because they are still moving around and walking around.
Nancy Treaster
Well, speaking of that actually, let’s talk about the last one which is wandering. 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. But in that episode, 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 how to manage 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 blog.
Sue Ryan
Those are excellent. And then let’s go to step 12, which is one of my favorites. We talk about 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 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 could get into the rhythm of it, the responsibility of it, the understanding of it, the respect of it. But 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, giving yourself permission to recognize that you need to step away for a little bit. You want to get someone who can help you with some respite care, do something so you’re practicing that. And then to get outside of thinking what we used to think about what self-care was. 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 at this stage? What we have is 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 and 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’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. So it’s a lot of different self care. And when you recognize in yourself that you’re feeling overwhelmed or you’re feeling frustrated. We say it at the end of every podcast. You’re not on this journey alone. Back in the first stages, we were talking about reaching out to other people. This is a time when it’s really great to get in the practice of reaching out to others.
Nancy Treaster
Along those same lines, 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 educate. You want to get educated in step 13. And these are the activities of daily living and the activities of daily living. You’ll sometimes see these called 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’s 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.
Sue Ryan
Sorry, I was just going back in my memory bank of some of the things that came out, yes. Yeah. You’re brokenhearted too.
Nancy Treaster
You’re shocked and horrified and not because they did it wrong, but because you just got punched in the gut. “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 for them to brush their teeth and you realize 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, well they’re through eating and you think “This is amazing, they’ve hardly eaten anything.” You have to realize they may have forgotten how to eat. They need to be restarted. They’ve forgotten what the utensil is and you need to restart them. 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. 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.
Sue Ryan
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.
And it’s important to have that so that the family members and friends and family, anybody who you’re, have an emergency plan. What do you do? What happens if something happens to you? What happens if something happens to them? What happens if you need to be gone? 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 were to 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 would be very helpful. And then if there’s an emergency, now 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 want 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. And then in this next part, okay, the next part of this messy middle is where now it’s really time for more support.
Nancy Treaster
The thing about the messy middle that we’re talking about here is the messy middle starts with you need to start seeing things. You have to start asserting 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 step 16 through steps, 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.
Sue Ryan
And the reason we talk about that is because again, there are two people in this. There’s the care receiver and there’s you. The more that we start having to do as we have to start asserting more control when we’re really in the middle of the messy middle and going toward the end of that is that we need to be able to have some respite and they need to be able to be engaged in more activities that will keep them and they need to be 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. So whether it’s a daycare center that they’ve got for dementia daycare centers, whether
it’s a day program, whatever kind of programs you can find, now is the time for them and for you.
Nancy Treaster
Because you’re exhausted and yes, they may need more activity, but you’re full, right? You’re full, you’re doing everything. And people will tell you, oh, well, they need more activity to keep them busy. And 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, step 16 is it’s time to also start thinking about professional health, planning it and understanding what’s available. You really need to begin evaluating professional help. And there’s two major things that we want to cover here. The first one is to 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.
Sue Ryan
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.
Nancy Treaster
Exactly. 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, a 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, is about how to hire a paid caregiver.
Sue Ryan
When we start thinking about professional help and we start thinking about what it might be to have our loved ones stay at home or to go into a community, we want to understand what the options are. So we want to understand when we’re evaluating needing more professional help and what that would look like, one of the things that’s important for us to do is, educate ourselves on the different options that we have, whether it’s what would it look like with professional help with our loved ones staying at home? Well, what would it look like, for example, if we were evaluating communities and it was the wisest thing for our loved one to live in a community? So even if we don’t know the answer yet, it’s important for us to understand. We’re able to make the wisest choice when there comes a pivotal point where we need to make a choice. So in our podcast and blog episode 28, we talk about home and community living options and things to consider for that.
Nancy Treaster
And we cover all that in episode 28. you know, it’s a great episode to really help you think it all the way through. Now, if you decide to hire a paid caregiver, by the way, sometimes you hire a paid caregiver, even if your loved one goes into a community, you might add a personal paid caregiver there. But when it comes time to hire a paid caregiver, we do have an episode number 32 on how to hire a paid caregiver. So you want to assess your loved one’s needs. You want to determine the type and frequency of care that your loved one needs. You want to, once again, understand the financial resources because the type of care can be more, some types of care are more expensive than others. So start being straightforward about what you really need. What can a family do? What do we really need a paid caregiver to do? Decide whether you’re to hire through an agency or word of mouth through friends. You can hire personally, but there’s some pros and cons to each one of those we cover in the podcast. And then make sure you go through an evaluation process, a proper evaluation process. So sometimes that’s easiest if you go through an agency, but if you’re doing it personally, you need to make sure that’s covered. Once again, all that’s covered in the podcast, just something for you to think about.
Sue Ryan
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 them. I know so many other people who have 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 what 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.
Nancy Treaster
Right, right. And the community finder can look for in your area, you can look for communities and you can look for home help, home help, so that you can look for each. So 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’ll help you be even more prepared as you get into the messy middle. So check out the Savvy Caregiver Advanced course.
Sue Ryan
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 also in your rational mind, you’re trying to help them and they’re not in a rational mind. So it gets really frustrating. It’s how do you help validate what they’re going through, 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 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.
Nancy Treaster
Yes, delusions are that episode in my opinion 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 post this one that once you get into it, you can decide if those are episodes you want to listen to.
Sue Ryan
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.
Nancy Treaster
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 safety. Remember step 10 was driving specifically. So these are other safety areas.
Step 12, continue to prioritize your self-care, very important.
Step 13, educate yourself on activities of daily living, often called ADLs.
Step 14, create a care plan. At a minimum, create a family emergency plan.
Step 15, start or increase leveraging dementia or adult day programs.
Step 16, start thinking about professional help because you cannot do this on your own and things will get beyond what your family and friends can do to help as well.
Step 17, continue your education so that you’re ready to continue through the end of the messy mental 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.
Sue Ryan
We know this journey can be very overwhelming. We want you to know you’re not alone. We’re all on this journey together.
Nancy Treaster
Yes, we are.
