5 Conversations to Have Before Dementia Gets Worse

0:00Here are five conversations to have with your loved one with dementia before it is too late, before the dementia progresses to a point where these conversations are incredibly difficult difficult, if not impossible. So one of the hardest positions a dementia caregiver can be in is when the careblazer, you, have to make a decision for your loved one and you realize, I have no idea what they would want me to do here. Would they want you to take away their car keys if you thought they were no longer safe to drive? Would they want you to start making financial decisions if you were worried that they were not making great financial decisions anymore?

0:40If living at home were unsafe, would staying at home still matter more than them being safe and you having support? Who do they want involved in making these healthcare decisions? What are their values that they want to preserve and try to make sure you keep in mind at all costs as more and more decisions pop up? What would they want their life to look like if they needed a lot more care than they need today? Care Blazer, real quick. If you learn better by watching things, then you can hop on over to my YouTube channel where I post these podcasts in video format, sometimes have different visuals to help people learn even better.

1:23You can just type in Care Blazers into YouTube and I will pop up. All right, let's get back to today's podcast. These are all incredibly hard decisions to make, even if you know what your loved one wants. Now imagine trying to make those decisions when you have to guess and you're not sure. And dementia makes it complicated. The goal is to try to have these conversations while your loved one is still with it enough to be thoughtful and have the capacity to understand the gravity of these decisions and decision-making. Because once dementia gets to a certain point, they're all of a sudden not caring so much about those things, not understanding the reality that you and I understand, maybe not believing that they're not able to do some of the things that they are no longer able to do.

2:13So at some point, dementia takes away their ability to engage in a thoughtful conversation like this, but early on in the disease process, even before the disease ever sets in, these are conversations you absolutely can have together. And by the way, you don't have to have the conversation just about them, you can involve yourself in it as well. This is what I would want. What would you want? That way it doesn't really single them out and make it seem like it's all about them because these are very sensitive topics. By the time these decisions actually have to be made, dementia has probably very likely changed the abilities needed in order to have that conversation together.

2:56That is why these conversations need to be had as soon as possible once the diagnosis is known, or it doesn't hurt to have these conversations if you're somehow on this channel and you don't have the diagnosis of dementia. Maybe your loved one is still in the mild cognitive impairment range. So in this video, I want to walk you through five conversations I wish more family members had before they ever needed the answers. And if you're watching this video and you're hearing about these conversations and you're thinking to yourself, well, we've never talked about any of this, stick with me. I'll share later on in the video about what you can do in that case.

3:30Now, I want to be very clear. It is impossible to be able to predict every possible thing that might come up in the dementia care journey. You can't. It's not going to happen. Dementia is way too unpredictable and people progress and have different symptoms all the time. You are not trying to create a giant instruction manual of knowing exactly what to do in every possible scenario. Instead, you're thinking to yourself, you want to understand what really matters to your loved one. What matters to them? What do they value? What do they care about? What are they afraid of? What are they willing to give up in order to protect something else?

4:07Who do they trust? You want to get a sense of what's really important to them now. That will be kind of like your guiding light and your compass as you find yourself having to make decisions or facing situations you never would have been able to predict. So conversation number one is all about when do you want me to step in? So one of the biggest conversations that we have with family members is not, would you want me to help you when you ever need help? Most people are probably going to say, yes, of course, I want you to step in and help me if I need help. That's easy to say when you are imagining a version of the future who clearly recognizes you need help.

4:44I bet you right now would say, yes, if I need help in the future, I hope somebody steps in and helps me. That's because you have your full cognitive capabilities and you are able to understand that. But that's not what happens in dementia. Imagine your dad today says, of course, I'd stop driving when it's not safe anymore. But then dementia sets in and you think you've settled the issue. And then years later, you're sitting across the kitchen table trying to explain to your dad that he's no longer safe to drive. And you want to take the keys. you want to tell him, hey, dad, you got lost twice this month while driving.

5:20Hey, dad, you bumped into the side of the garage while you tried to pull in. And he may very likely look at you and say, you're out of your mind. There's absolutely nothing wrong with my driving. I'm an excellent driver. I've been driving for most of my life. Does that sound familiar at all? So now what? What do we do? That's a very different situation. So this happens because dementia affects way more than memory. It affects judgment, reasoning, a person's ability to recognize changes in their ability level. So a more useful conversation today would be, if a time came when you believed you were still okay, but I was seeing that things were not okay, and I was really seriously concerned about your safety, what do you want me to do?

6:04Would you want me to talk to your doctor? Would you want another person to be involved that you trusted? Would you want me to step in even if you were angry with me? And of course, this kind of conversation does not apply only to driving, yet it can apply to money, medication, living alone, online scams, cooking, weapons in the home, anything where someone may eventually need help before they recognize that they need the help. One of the hardest parts about dementia caregiving is that sometimes keeping someone safe means that you are doing something that they do not agree with in the moment. And knowing how they would have wanted you to handle that situation when they were still fully capable of telling you can help you tremendously emotionally have more comfort and relief in the moment when it is really difficult.

6:54Conversation number two, what matters most if you need more care? So a lot of families have a version of a conversation, something like, I never want to go to a nursing home. I never want to go to memory care. I want to live at home forever. And I completely understand why that kind of conversation is had. But that statement alone doesn't give you enough guidance later because real caregiving decisions that need to be happen, they're rarely home or facility. They're usually a lot more complicated. What if staying at home means that your loved one, you, right, only gets two hours of sleep at night?

7:34What if staying at home means a lot more falls because you're falling repeatedly or that you're home alone for long periods of time or you don't have a lot of social stimulation or you would move somewhere else but it meant giving up your house but you could be closer to your kids and your grandchildren? Now we're dealing with competing values here. So instead of only asking where would you want to live, you can try to understand what would matter most to you if you needed more care. Maybe staying closer to family members matters more than staying in a particular home. Maybe privacy is incredibly important, so we would not want to consider a shared room.

8:14Maybe being around other people matters, so finding a place with good socialization and incorporating decisions that have social outlets. Maybe they would rather spend their money than preserve as much as possible for future inheritance. Maybe being able to go outside every day matters more than having a large, beautiful home. Maybe their biggest fear is being a burden to their spouse or their children. These things, knowing them now can help you later because you may never get the exact situation that you imagined, but you can ask which options come closest to protecting what mattered most to them based on what I know.

8:50This is a much more useful question than trying to perfectly recreate a plan somebody made 10 years earlier. Of course, most of us would probably say right now, given the choice, we want to stay at home. We want to die at home. We don't want to go to a strange place with strange people and receive care. Of course, we would say that now. But what happens when we consider failing memories, failing bodies, increasing stress on our loved ones, all these other demands that we're not usually considering when everything is going pretty well. All right. Conversation number three, who do you trust? This sounds simple, but it can help prevent an enormous amount of confusion.

9:28If something were to happen and the person can no longer manage everything on their own, who do they actually want involved? Who do they trust with money? Who do they trust with receiving medical information? Who understands them well? And just as importantly, are those people, do they want to be making those decisions? Are those people willing to be active in the care? And are there people specifically they do not want involved in making certain decisions? This is important because this can help avoid those messy situations where maybe one adult child thinks mom should stay at home. The other adult child thinks mom should move to a care facility or get more medical intervention.

10:08And another person wants to prioritize mom's comfort and not really do much at all. Nobody agrees on the same thing. no decision is being made, and mom is the one who ends up suffering in limbo. So yes, it's a conversation on who your loved one trusts, but it's also a conversation on who would they want to have the authority to make decisions because your loved one trusting somebody is different than a level of trust to make a certain decision for them. Basically underneath it all, the real human question here is who do I trust to understand me and to speak for me and to make decisions for me when I cannot speak and make decisions for myself?

10:47Who is that person or who are those people? That matters. Conversation number four, what makes a good day a good day for you? This one might sound less urgent than driving money, living in arrangements, but it's still incredibly important, especially for quality of life. So ask your loved one, when you think about a really good day, what makes it good? Maybe it's sitting on the couch outside with a cup of coffee in the morning. Maybe it's going to church or it's music or it's having a dog nearby. That would be one of mine. Seeing grandchildren. Maybe it's being left alone for part of the day and having some privacy.

11:26Maybe it's actually getting dressed nicely or gardening or watching the same baseball team they have been following for the past 40 years. Maybe it's dessert after dinner. These things can sound small when somebody is healthy and independent, but later they become some of the most useful information you have because dementia care isn't just about keeping somebody medically safe. It's also about trying to preserve as much familiarity, as much meaning, pleasure, identity, connection, dignity as possible. And if the person with dementia can no longer easily tell you what they want, what they need, knowing what has always mattered to them will give you a really good guessing place to start.

12:14It's also why I would not wait until somebody had dementia to start learning these things about the people you love. You probably already have an inkling or have some really good ideas yourself, but have the open conversation with your loved one. Something really might surprise you. Sometimes we can know somebody for decades and we still don't know the answer to what actually makes you feel most like yourself. What would you say makes a good day a good day? Something worth knowing. Okay, conversation number five. If your health and abilities changed a lot, what would you want to prioritize? What care would you want to prioritize?

12:53This is the conversation that might be the heaviest and the hardest on the list because now we're getting into values and serious illness, quality of life, comfort and dependence, medical treatment, and eventually end of life care. And again, I am not saying you need to be able to predict every possible future decision. That is impossible. I'm talking about understanding the direction somebody would want you to take when two important things conflict with each other. For example, is living as long as possible the highest priority or would comfort be more important under certain circumstances? How important is avoiding hospitalization?

13:36How important is staying at home? How much independence would they be willing to trade for safety? What makes life feel like it is worth living to them? These are not easy questions and people can change their mind. What somebody says at 55 might not be their answer at 75. So this is not just one enormous conversation. We have one time and then we never discuss again. It can be something you have over time, maybe a question every now and then to really get a good idea. And also the goal isn't to make impossible decisions about a future that they can't really fully understand because I'm not sure any of us can really fully understand what it's going to feel like when we go through these experiences.

14:20But the goal is to understand the values underneath the decisions because values can still help guide you when you're trying to make a decision for your loved one about a situation that you never discussed. So now what? What if you have never had these conversations, but your loved one has dementia and you're not sure they would be able to grasp the seriousness of these conversations? I am talking right now to the careblazer who has been watching this whole video and thinking this would have been great to know five years ago. Maybe nobody knew dementia was coming. Maybe your loved one never wanted to discuss these things.

14:53Maybe you tried and they shut the conversation down, which is exactly what my dad did. My dad was so close to dying and he would say, I'm going to live till I'm 150 years old. We don't need to talk about those things. So sometimes you're just not going to be able to have those conversations. Sometimes maybe the changes happened faster than anybody expected. Perhaps maybe like in vascular dementia where maybe somebody had a big stroke and then they were fine. They could have had the conversation yesterday and now today they can't. I do not want you to leave this video with a list of things about things you never did, but you should have done.

15:29That's not the point. I am guessing that if you've never had these conversations with your loved one and you think that it is too late, you probably still know so much about your loved one than you realize that can help guide your next big decision. Think about the way they live their life. What did they consistently value? What choices did they make when they were healthy? What did they say about other family members who were going through serious illness? What were they willing to spend money on? What did they protect fiercely? What made them happy? What made them scared? What did independence mean to them?

16:02How do they feel about medical treatment? How do they talk about being cared for by other people? You may have decades of information about this person, but you've never been in a position of having to really think about it in a way of you making value-based decisions for them. And when you're facing a difficult decision, sometimes the question becomes which choice seems most consistent with the person I have known them to be, not which choice guarantees they will be happy with me today because those are mostly not the same thing. In fact, they can be quite opposite from one another. Someone with dementia might be furious that you stopped them from driving.

16:36That does not mean you violated what matters to them. That does not mean that you are going against what they wanted. The person you knew before dementia set in may have valued deeply protecting them when they are unsafe. They may have told you repeatedly that they would never want to hurt someone. That history matters even if in the moment what they are saying is completely different and they are upset with you. You're often trying to honor the person's values that you are caring for while their brain is no longer able to interpret the situation that you are seeing in the same way. And sometimes, quite frankly, there is no perfect answer.

17:14There may only be the decision that balances out their safety, their dignity, their comfort, their values, and the realities of the situation you're facing in. You just make the best decision you think you can make in the moment with the information you have in that moment. And we make the decision and then we adjust and we adapt from there. So if you do have these conversations now, start small. You don't need to sit down your spouse or your parents tomorrow and announce, We need to discuss your future dementia and the decline, and we have five important questions to go over. You don't need to do that.

17:46It might not go over particularly well. Keep in mind, these are sensitive, deep, thought-provoking, often uncomfortable questions that people might have a hard time talking about. Also, you can look for opportunities to have these conversations naturally. For instance, if somebody that you both know all of a sudden stops driving, that might be a beautiful opening to say, what would you want us to do if we became worried about your driving? It doesn't need to be a set time, set date. Let's sit down and have a formal discussion. You can look for similar things that are happening around and say, by the way, if something like that ever happened to us, what would you want us to do?

18:23What do you think would matter most to you if you needed more help, right? Maybe the neighbor is moving into assisted living or they're moving homes to go live in a smaller home closer to their grown children. That is a perfect opportunity to say, what do you think would matter most to you if you needed more help? Would you want us to move closer to children or would you want us to keep this home no matter what? Remember, you don't have to get perfect answers, so don't try to force anything. You're really just trying to get a better understanding of the person because one day you might be sitting in the doctor's office, talking with your other siblings, deciding whether someone can still live alone or trying to figure out what the next level of care should be, and in that moment, knowing what mattered to the person before you had to make the decision can be an absolute gift and bring you so much peace of mind.

19:09That doesn't mean it's going to make these decisions easy. It won't. But instead of asking, what am I supposed to do? You have another question that is available to you now, which is knowing the person that I love, what would they want me to protect here? Knowing what I know about this person and everything they've told me, what do I think is the best decision for them here? And sometimes that can give you the direction you need to make the decision. All right, Careblazer, I know that this is tough. I know that this is not an easy video to watch, let alone think about, let alone actually do something with and have the conversations.

19:40If you are looking for help to get you through the difficult moments, the grief, the loss, all the hard and heartbreaking situations that happen, I would encourage you to, number one, the easiest, quickest, cheapest way is to get a copy of the Dementia Care Toolkit where I cover all kinds of these issues and talk about what you can do to help in your situation. Number two, if you'd like to work more closely with me and other Care Blazers and other experts, check out our Care Collective, where we talk about conversations like these week after week, day after day, and you will immediately be met with a group of amazing Care Blazers in similar situation to you and Care Blazers who have moved beyond the situation and have come through to make it on the other side.

20:22Care Blazer, I am sending you so much love. Thank you for what you're doing for your loved one with dementia. Bye. Careblazer, real quick, if you think about the most helpful caregiving resources you know of, it likely is because somebody told you about them. It would mean the world to me if you let another caregiver know about Careblazers and the support we offer. I will be forever grateful, and you'll be helping another caregiver in the process. Thank you.