The Realities of Dementia Progression: What Caregivers Need to Know

Dementia does not usually arrive all at once. It comes in pieces. A forgotten word. A repeated question. A personality shift. A stumble. Then one day, what used to feel manageable suddenly becomes the new normal.

In this deeply personal solo episode of Chat with Nat, Natalie opens up about the realities of dementia progression, especially through the lens of caring for her mother with vascular dementia. She shares the emotional, physical, financial, and caregiving challenges families often are not prepared for as dementia progresses over time.

From mobility decline and feeding struggles to anticipatory grief and caregiver burnout, this episode is an honest conversation about what dementia caregiving really looks like behind closed doors.

What you will hear:

• Early dementia signs families often miss
• The difference between vascular dementia and other dementias
• Why mobility decline can happen earlier with vascular dementia
• The emotional reality of caregiver burnout and chronic stress
• How feeding, hydration, and swallowing challenges evolve over time
• Why UTIs and infections can create major cognitive decline
• The hidden grief caregivers experience while their loved one is still alive
• Financial realities families are rarely prepared for during dementia progression
• Practical caregiving lessons Natalie has learned during her mother’s decline
• Why caregivers need support systems, advocacy, and self care too

If you are caring for someone with dementia, supporting a caregiver, or trying to prepare for the future, this episode will help you feel more informed, more validated, and less alone.

Today's episode is brought to you by Casa De Confidence Productions, helping podcasters confidently share conversations that matter.

This podcast covers caregiving, caregiver burnout, caregiving and finances, financial planning for caregivers, money management, elder care, and balancing caregiving with work and life. Chat with Nat: Conversations That Count helps caregivers feel supported, informed, and confident in both their care decisions and financial future.

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The content shared on this podcast is meant to support and inform, but it is not a substitute for professional financial, medical, or legal advice. Please consult with a trusted professional who can guide you based on your individual needs and circumstances. 

Transcript

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(Music) Dementia doesn't usually arrive all at once. It comes in pieces. A forgotten word, repeated question, a personality shift, a stumble. A hard day that suddenly becomes the new normal. And one of the hardest parts? Just when you adapt to one version of your loved one, the disease changes things up again. Today we're talking honestly about the Dementia progression realities that families often aren't prepared for. What changes can happen physically, emotionally, mentally, and specifically some of the things that I've experienced, personally walking through vascular dementia with my mom. Today's episode is brought to you by Casa de Confidence Productions. Julie and Dan Collins are the kind of team every podcaster dreams of. They're incredibly talented, helping your voice to come through clearly and confidently. If you've ever thought maybe I should start a podcast, reach out to them at casadeconfidence.website and have a conversation about what that might look like. Welcome back to Chat with Nat, y'all. This is where conversations that count happen, where we talk about life, money, caregiving, resilience, and building a future that still matters even when life doesn't go according to plan. You know, every dementia journey is different. Symptoms vary by diagnosis and by person. This episode is not medical advice. The goal here is to provide awareness, preparation, validation, and support for people who are walking a caregiving journey with a dementia diagnosed loved one. So let's start with a little bit of an educational foundation here. Dementia is not just one disease. It's actually an umbrella term for conditions that affect memory, reasoning, communication, mobility, personality, and physical function. The four most common types of dementia are Alzheimer's, vascular dementia, Lewy body dementia, and frontotemporal dementia. Now, I am not going to deep dive into the differences and the descriptions of each of those today. You're welcome to reach out to me. There's an amazing book I found and read, and I should have brought it up to record this episode with me and I didn't, but it's an amazing book that walks you through all those different differentiations and helps you to understand better the specific diagnosis your loved one might have received. You can reach out to me on Instagram, send me a DM, or through the link in the show notes, and I'm happy to provide you the name of that book. What I want to talk about this week is, in general, the realities of dementia and how it progresses. And I'm going to be tying in specific things with vascular dementia because that is the diagnosis my mom has. So that is where I have the most experience, and that is where my reality lives. Right now, nearly 7 million Americans are living with Alzheimer's or other dementias, and that number is expected to continue rising dramatically as the population changes. Now, with vascular dementia specifically, progression can sometimes feel less like a smooth decline and more like steps downward after events like a stroke, an infection, reduce blood flow to the brain. So you may have, and this is what we experienced, definite cognitive decline, memory issues, slow decline in physical abilities for an extended period of time, and then out of nowhere, boom, something happens, and there is a very significant decline. And if you've listened to some of my past episodes over the last few months, I talk about what this has looked like the last six months for my mom and for our family. Okay? Now, before I jump into the body of today's episode, I want to talk about the importance of families being prepared financially for retirement, but not necessarily for progressive cognitive decline. Okay? So retirement is one the care that you may need as you age or receive a significant diagnosis during that time frame, or for some people early onset diagnosis, right? That is what it's so important to prepare for, in addition to retirement. There are things like home modifications, medical equipment, caregiver time off, in-home help, adult diapers and supplies that you're going to need, transportation to and from appointments, hospital beds in your home, specialized nutrition, and long-term care potentially. In our journey alone, we've had to adapt constantly as my mom's needs have changed from the time they moved here until now. So three and a half years, very significant, intense things needed this last six months, but even about six months after my parents moved here, we did a full remodel of the bathroom that my parents use to make it safer and more comfortable for my parents. And that was a hefty price tag that insurance does not cover. Okay? So if you want to know more about what those kinds of things look like, it was probably maybe, I think, three episodes ago. If you go back, you'll see I did one about the unexpected expenses attached to caregiving. And so you can go back and listen to that one and some of the numbers and stats that tie into that. But of course, if you have questions in that area, please reach out to me. I am a wealth strategist. And one of the things I do is help people to confidently plan for retirement and all of the unknowns that could come along with it. Family caregivers in the United States provide hundreds of billions of dollars worth of unpaid care every single year. And most families are financially underprepared for how quickly those costs can pile up. People think that that retirement plan is the finish line. But long-term care planning, caregiving planning, and income protection matter too. Because if you get a diagnosis that requires extensive out-of-pocket expenses, it can drain that retirement you planned for. And I work with people all the time that one of their parents needed that kind of care and it drained the retirement and left nothing for the other parent who was healthier, who lived longer, situations like that. So again, please, anytime you have questions about what that might look like for you, if you're on track, what areas of concern you should have or do have and how to address those, please reach out to me. I would love to have that conversation with you. And it doesn't cost you anything to sit down to talk to me about where you're at and how you can get to where you want to be in the future. All right. So let's jump into the meat of this week's episode. What are some of the early changes that families often miss? General dementia realities, in truth, repeating stories and questions. Now, I will say this is something my brother and I ran into for, I want to say maybe two or three years before my mom's initial diagnosis, which again, we didn't know she'd been diagnosed for a year after that, but she was diagnosed in July 2020. And for about three years prior to that, we had really starting to, started to notice the repetition, the memory things with my mom, but it's very easy to think, gosh, she's almost 80. You know, she's just, or I guess at that time I'm on would have been mid seventies, but she's getting older, you know, losing her memory. It makes sense. We never really thought about is there something specific going on? Okay. But repeating those stories and questions, that is so common and it doesn't mean they have dementia, but it is one of the initial things you may notice, misplacing things, difficulty, finding the right word, trouble following conversations, mood changes, confusion with finances, withdrawal from social activities and anxiety or frustration. Now, my mom was one of those people that love to be around people. She loved to cook for people. She loved to go to gatherings, especially with family and close friends. But she really started to withdraw from that and get to a place where she was very uncomfortable because see the short-term memory goes before the long-term memory. And so as that started, that, that decline in memory started to increase, especially I really noticed this part of it after my parents moved here three and a half years ago. So now my mom didn't know a lot of people in Texas, other than my community and people they'd met when they'd come to visit me. But my mom and dad were always avid churchgoers. And my mom suddenly became very uncomfortable being around groups of people, especially that she didn't know. But my mom could talk to anybody about that. I mean, she did catering for her career. She would meet people all the time. She didn't know, but she became very aware of who was and wasn't around her. And she became very uncomfortable as a matter of fact. Gosh, before my mom's significant decline, I would say probably a year or two prior to that, she wouldn't go anywhere with just my dad. She always wanted to make sure I was there with her. And my dad. Right. So it's not that she didn't want to be with my dad. She didn't want to be only with my dad. If they left the house, she wanted to make sure that I was there. Okay. So sometimes that that's one of the things you notice, they start to draw back from things they used to love to do, having anxiety or frustration about things they haven't been so worried about in the past. And the truth is that sometimes the person notices the changes before everybody else does, and they can create fear, embarrassment, frustration, or anger. There were multiple times that my brother and I would be together. You know, if I had gone into town, my parents lived in Utah, I'm in Texas, my brother's in Utah. So I would go home to visit for the holidays or things. And there would be moments that things would happen and my brother and I would kind of look at each other. And my mom would quickly try to cover it up. And we look back now, we know very much that was the stage where she was aware when she misstepped and would try to quickly correct it to cover up for it or laugh it off. And my brother and I would just be kind of looking at each other. But again, we were still in this place of just thinking, you know, mom and dad are getting older. Their memory is not what it used to be. Never really thought about the significant type of diagnosis that would be coming for my mom. Okay. But it can be embarrassing for them. Or sometimes if you point something out, they can get really frustrated or angry or combative with you when you're pointing out that something's changed with them, because they already see it, and they don't understand it. And they're fearful. And so sometimes it's important to slow down, maybe ask some questions, talk them through it from a place of support, not trying to point out where they're wrong or they need to correct something. And goodness, if that hasn't been something I learned over the last few years for sure. Vascular dementia is actually considered the second most common form of dementia Alzheimer's disease. And one of the things that makes it unique is how the symptoms can fluctuate. So let me explain a little bit more about this. There's a slower processing speed. So your person may, you may ask a question as the disease progresses, and it's like they're calculating or really thinking it over. Then there's the confusion that fluctuates. Some days it seems they're there, and other days they're completely gone. And it's like a switch is turning on and off and you're trying to figure it out. They have trouble with planning an organization. Emotional changes. They're just more emotional in every type of emotion that exists than they've ever been. Now, this stat specifically says that mobility changes are often earlier than some other dementias. Because I lived out of state, I would say I may not be the best guide for that piece of it because my mom could have been struggling with this even more than I realized. But with me only seeing her a couple times a year when I went there or she came here, I don't think I was aware of it. Let's say it was probably about 2017 that we were struggling to get her to use a walker. She was too proud. She's like, "If I walk with that in the store or out and about, people are going to think something's wrong with me." And I remember looking at her one time saying, "Mom, something is wrong with you. You're, you have severe arthritis. Your legs hurt. You're not able to do the things you're, well, I don't want them to think I'm old." And I said, "Mom, you are old, but you've earned every single year. Don't worry about it. Most people aren't paying as much attention to you as you think they are," which is a lesson to learn for life in general, honestly. But I do think my mom definitely had mobility changes. Now, because I've only dealt with vascular dementia, I don't know how quickly they happen in some of the other dementias. I do have some friends, some people that I follow and connect with from time to time whose loved one has Alzheimer's. And there was several years before maybe they got to the point of needing a walker in a wheelchair where my mom was actually in fighting a walker, but we convinced her to be able to use a wheelchair because she used to love to go shopping and she could not walk to shop. And that's how we finally converted her to a wheelchair, honestly. But that was happening consistently three years before my mom's formal diagnosis. Okay. So I think it probably lends to that saying mobility changes early than some other dementias, but I haven't dealt personally with other dementias, just comparing on the things I can there. But with vascular dementia, there were times with my mom, 100%, she seemed almost like herself, able to have a conversation, ask to watch certain shows she wanted, eat certain foods she wanted, go do the kind of things that she enjoyed doing. And then there would be some days that she would just look completely spaced out. Like she wasn't sure what was going on. It was like the lights on, but nobody's home situations. And those times, it was super obvious. Now those started after her diagnosis and after she came to live with me, but those situations, I feel like were incredibly obvious, but they started to increase in frequency and yet not huge quick declines like we ran into beginning last November. If that makes sense. If you haven't listened to my episodes, like I said, the last few months, the beginning of this year, I did a series about caregiving tied to my mom's initial hospitalization and the process of going through that, which the decline started in November. Her first hospitalization was the week before Christmas. She had a second hospitalization the first week of February, end of January going into the first week of February. Anyway, there's a bunch more information that kind of falls in with that. That is the biggest, most significant and definitely fastest decline we've seen in this entire process for sure. But the unpredictability can be incredibly hard on families because you keep hoping that those clear moments mean improvement. And this is so true as different things shifted to, you know, my mom was having adjust medications adjusted to balance out some of the increase in symptoms and things like that. And the impact or effect that those medications were taking would, even though I knew without a doubt, there's no reversing vascular dementia, there's no reversing any kind of dementia. It is what it is. They would give me these little windows of hope of we're gonna, oh, maybe we can hang on to her a little bit longer. But that's not necessarily what that actually means. Okay, so it's really easy to fall into that because you're watching somebody you care deeply for disappear and you're wishing anything in the world you could come up with might change that. And so you do get stuck in those moments and it's okay. It's okay. We always hope we can hang on to them a little bit longer or that we can do something that slows the progression or changes the progression or whatever it might be. That is very much from a caregiver perspective, one of the biggest emotional points, especially in the earlier years of dementia. All right. So let's talk a little bit more about the middle stage. This is when caregiving is going to intensify, right? There's increased supervision needs. So for my parents, this would really be starting in May of 2021 when I went home. Oh, 2022, May of 2022. I went home for my mom's memory care visit and the doctor said they can't live safely on their own. Okay. So we went into hyper speed, getting everything settled, getting the homes sold their estate, set up all of the things we needed to do and then moved them here to Texas with me, but increased supervision. Now I was not hands on, beating my mom, dressing my mom, bathing my mom, any of those kinds of things at that time, but they needed somebody there to keep an eye, to make sure they were safe, to get them away from a home that was literally covered in stairs, which was a huge fall risk, right? And the fact that they couldn't help each other if something happened. Then you have medication management. Now my dad, for the first couple of years they were here, was managing both of their medications. I was just double checking everything and keeping track of when we needed to refill things. But for the most part, he was still managing that for them both. I took that over, um, probably about a year ago. And then safety concerns. All right. I mentioned earlier in the episode, we redid that bathroom in my house. My mom caught her foot stepping into the bathtub shower combo one time and almost fell and it scared her so much she didn't want to take a shower. And so we did a complete remodel to put in all the safety features and have a walk-in shower that was a lot safer for her to use and make her feel more comfortable. Wandering risks. Now this is not one we have dealt with with my mom other than in the house, right? She would get up in the middle of the night and wander into the living room or holler for somebody to get up and pay attention to her or whatever. We didn't have wandering outside the home risks with my mom, but that is a pretty big risk for dementia patients. Difficulty dressing and bathing. For us, this started, I would say maybe last summer, my dad had to start helping my mom a little more. She wouldn't allow me to help at that point from, um, I guess a cognitive perspective. She just still was like, no, your dad can help me. She didn't want me to step in just yet. Uh, mostly with showering. My mom was still getting herself dressed for the most part. Well, no, about nine months ago, she was still walking up to the living room, things like that. We were still really only needing the wheelchair when we were out of the house. So it was really just showering that my mom needed support in that started last summer. Sleep disruption. We definitely started to see that shift about a year ago now. So mid to late spring of 2025, we did some medication changes. It helped level that out for us, but you're going to see appetite changes, sundowning, personality shifts and increased caregiver stress. Those last four, well, add that sleep back in there because we got her to a pretty steady place last spring, but sure enough in November, that the lack of sleep was a huge issue. Appetite changing, not wanting to eat, sundowning, having her days and nights backwards. The personality shifts, extremely aggressive and combative. And of course that led to increased caregiver stress a hundred percent. I remember telling my brother from mid November until, well, the third week of November until like mid February, I felt like I had a newborn maybe again. I don't think I slept more than two or three hour stretches. I was constantly concerned, constantly stressed out. What if, what if, what if it was an absolute nightmare. And yet I know that in a lot of cases, caregivers deal with that for a lot longer than the three months that I did. So those can, those things all can show up in different scenarios or different orders or different extremes within the different dementia diagnosis. I want to point out this mid level caregiving stage or this mid stage where caregiving increases is often the stage where family members quietly become full-time caregivers without even realizing it happened. That is not what happened to me. I chose my parents to be here. Excuse me. So I became, I became their caregiver long before they needed me to be that hands-on person that I am today. But for a good majority of people, this is where that happens. You know, you're the one that's supporting getting to doctor's appointments and things like that while they're still living independently or maybe living with you, but still managing independently. And all of a sudden things shift and you become the default caregiver. Dementia caregivers report that some of the highest levels of emotional stress and burnout among all caregiver groups. Let me say that again. Dementia caregivers report some of the highest levels of emotional stress and burnout among all caregiver groups because the role often becomes physically, emotionally, mentally, and financially consuming all at once. I did not say it right the first time I tried to to repeat that statistic, but that is absolutely accurate. That is absolutely accurate. Dementia caregivers are some of the highest emotional stress and burnout of all caregivers because everything will start hitting all at once. Many caregivers are also raising kids, working jobs still, or caring for spouses at the same time. So then add that on top of this significant change with physical, emotional, mental, and financial issues for your loved one you're caregiving for. So if we get a little specific with vascular dementia, again that's the type of dementia my mom has that I'm most familiar with, is that mobility decline. I already talked a bit about that. It actually started I think about three years before her official diagnosis, but when that happens you start seeing balance issues, increased fall risk, weakness after vascular events. Like just, you know, now my mom hadn't been, she'd been to the ER once for a UTI probably coming up on two years ago now, but that was really it as far as medical events, you know, any kind of change in that area that we ran into. Nothing significantly vascular, and even with her back-to-back hospitalizations in the last five months, we were told they saw no new stroke activity, however, a significant decrease in frontal lobe activity, which the first hospitalization we told normally does not accompany vascular dementia, but the more research I've done since she was hospitalized the second time, and the second time we actually met with neurology because she had fallen and there was a head injury involved, so they wanted to check her for seizures. So with meeting with neurology they actually told me it absolutely is a change, and so in vascular dementia for my mom, that is where we saw her temperament completely do a 180 and throw us on our heels and trying to figure out how to navigate, even getting her dressed, fed, anything like that, okay? Difficulty sequencing tasks, so doing things in a normal order that you would, and greater physical limitations. Some of the other things that come up that need to be dealt with is transfer assistance. Again, for us, this all happened in the last six months now. November, it's May, yeah, so six months, okay? Starting to need to help my mom transfer from the couch or eventually her lift recliner into her wheelchair, or to standing and utilize her walker, but having to accompany her for balance issues. Utilizing a standing frame, man, we have the coolest standing frame. I was so in love with that thing, but my mom seemed to be on a very fast trajectory of physical decline over the last six months. We went from helping her to stand out of a chair, sit in her wheelchair, but again, she was still getting herself dressed in things, to we now had to lift her to get her in there, to suddenly we needed a standing frame to transport her at all very quickly. But these are the kind of things that you'll see. We got an adjustable air mattress. My mom went bed bound three weeks ago, so it's adjustable air mattress. We're dealing with hydration struggles, feeding struggles. I just posted on social media about this last night. My mom has started spitting her food back out at me and I'm like, are you kidding me? And it is frustrating because it makes an already long process of feeding her even more difficult, but my mom is very nonverbal for the most part now. And that's a pretty significant change that happened in just the last couple months as well. But so she doesn't always respond to me. She's not telling me when she's full, she just keeps eating and eating. And then, and sometimes three bites in and she's trying to hold her teeth together and not eat anymore. And I know she needs protein, she needs sustenance, she needs to stay hydrated, all of those kinds of things. And so navigating ways to deal with, I mean, I have sang the songs to her that I used to sing to my son when he was a toddler. I've tried the airplane trick with feeding care, you name it, I've done it. And I have felt extreme frustration in many moments, which means I walk away and feel a ton of guilt for being frustrated because she can't control it. She doesn't even know she's doing it. That pressure sore vigilance. I have talked about that a ton. Oh my gosh, pressure sores are going to be the bane of my existence. I feel like that's going to be the thing I struggle with most. Now I've got them under control, but my village vigilance to maintain no pressure sores, that's going to be it right there. And then of course, additional adaptive equipment, including her clothing that we use for her. If you didn't know, you can get an Amazon and search adaptive clothing for seniors and find the most amazing gowns and even pants and tops and things like that for your loved ones. So if you're in a place of needing to adjust their clothes for ease of getting dressed, et cetera, check it out. The first time I ordered gowns for my mom, I didn't even think of that. And then I was struggling dealing with getting them on and off of her in the bed. And I went to order something or look for something a little bit different. And all of a sudden the word adaptive popped into my head. And I looked it up and I was amazed at what's available. It has made my life a ton easier. But one of the biggest realities for us has been how physical vascular dementia can become, not just memory loss, but mobility changes, the weakness, the swallowing, and needing more hands on care. 100% hands on care at this point for my mom. She is not able to get out of bed. We're actually waiting for the approval through insurance to come through to get us a hoyer lift so that I can get her out of bed and into her recliner, maybe even out on the patio for some fresh air here and there. But for three weeks it has been, well, even before that I was feeding her, I was transferring her, I was getting her on and off of the standing frame, all of the things, but it is, it is every component of that hands on care now for sure. Unlike some dementias that begin primarily with memory symptoms, vascular dementia often affects mobility, balance, and physical functioning much earlier in progression. This I would agree with. Remember I was saying it was probably around 2017. We were trying to get my mom to utilize a walker. We ended up getting her to use a wheelchair when we were out and about for long periods of time. Then she didn't get diagnosed with dementia because of the increased memory and cognitive functions until, or the decreased, I might've said it increased, the decreased memory and cognitive functions until 2020. So for my mom, it was that physical decline, but to be honest with you, my mom has very severe arthritis. And so I think a lot of what we were seeing, we were just attributing to that because there wasn't memory function. Now my brother and I saw some things, 2018, 2019, we're like, what? Oh, well, I'm just getting older. She's losing her memory type thing, but it was definitely physical first. So let's talk about the feeding, hydration, and physical changes a little bit more. Okay. When you're talking about in general with dementia, the progression realities here, maybe forgetting to eat, loss of appetite, swallowing changes, food texture and sensitivity, weight loss, the risk of dehydration and medication resistance. I think that is probably pretty across the board with dementia. It falls in, definitely falls into the vascular dementia category, but no one prepares you for how emotional it feels trying to convince somebody you love to take one more bite or one more sip of water. I have been in tears more than once because I'm doing everything I can and I know how important it is. And look, one of the things I've shifted is I'm going in there every hour. And if I can get two sips of liquid in her, it's a win, but I can't wait for meal times or I can't go in and just do it every couple of hours. When I rotate her, I have got to be more diligent, which requires more attention, scheduling and organization for sure. Now, swallowing and hydration challenges become increasingly common as dementia progresses, which is one reason caregivers often become hyper vigilant about nutrition and fluid intake. A hundred percent. A hundred percent. It is so important that you're paying attention to their ability to swallow or and I've learned even more of this the last few months working with our home health team. And there's the speech therapist is the one who actually does the swallow tests, deals with all of those kinds of things. And we have had great support with this. I'm actually, we had graduated from it after her last hospital visit in February. So we haven't had them coming the last, uh, probably since like the first of March, but I'm actually pulling them back in because of some of the challenges I'm having with my mom. Um, she's gone to straight puree diet. And so we were doing pretty good for about a month and then we're starting to have issues. So I want to make sure there's not anything there we need to be concerned about anything else we need to adjust and address that accordingly. So for specifically vascular dementia, here we go. Spitting the food out, holding liquids in their mouth, not wanting to swallow needing thick wind liquids. This is something I just started this week with my mom thickening their liquids, crushing the pills. Yes, yes, yes, yes. That started this last month as well, trying different cups and straws every single kind. One day something works the next day it doesn't. And so I'm just constantly rotating through what's working today to get mom hydrated and overall exhaustion around the nutrition and hydration. Here's the thing though, she won't eat it all for my dad. So your loved one may just test you by making you the only one who can get him to do it. Right now that's where my mom is at. She won't eat for anybody but me. And yet it is a trying experience to step through that process. What you said, take me about 30 minutes after going bed bound has gone to about 45 sometimes an hour. And so adjusting my schedule for that is really important. You start becoming part caregiver, part detective, part nutritionist, part negotiator, just trying to keep them hydrated. Why? Because one of the worst things that can happen is a UTI. The level that that can decline my mom is absolutely insane. And I do not know if that is across the board with all memory care. I think it does have a pretty strong impact because I know the groups I'm in, the people I talk to, the people I follow, the conversations I have, everybody is so hyper focused on those UTIs and hydration. And so I do think that in general infections across the board with dementia, I'm not a doctor. So do the research for the type of dementia that your loved one has. But I know for my mom, every time she's had a UTI, we have had a significant shift. Okay. So when something that used to be automatic suddenly becomes very difficult, it can feel absolutely heartbreaking for everybody involved. Now my mom cognitively is not aware of that, or at least to the point where you can notice it anymore. But I really don't think she's aware of any of those things she's doing. And that can become even more heartbreaking and emotional because there's no way to connect on, I need you to open your mouth. Now, one thing that I have learned, one and two word commands, open, bite, drink, sip, sit up, lift, if I'm trying to stretch her in bed, lift for her arms, for her legs, as we're doing different things. Very simple one and two word instructions is definitely what has worked best for us. But it doesn't always work y'all. It does not always work. The emotional and personality changes. Okay. In general with dementia, you're going to see anger, anxiety, withdrawal, emotional unpredictability, loss of a filter. Yes. Loss of a filter for sure. Confusion based reactions. They're all typical. They're absolutely all typical. This disease affects the brain. Don't let it affect the love underneath that. So what, what I mean, and I said it that way to say when your loved one's brain is changing so much, it is easy as you're reacting to that, trying to figure out what to do, how to do it, how to help, how to care, how to, whatever. It can be very frustrating. So as a caregiver, do not forget the love that exists. And remember that just because this disease is affecting your loved one, it has not made them not love you. They just may not be able to show it the same way, but it's still there. Now there are times I can lock eyes with my mom and I can tell just by the slightest change in her eyes in the way she's looking at me that she's telling me she loves me. And I don't know how to explain it. It's just something that I have experienced lately and I'm so grateful for it. Many people with dementia also experience depression, anxiety, agitation, or emotional distress as they become aware of something as their mind is changing. This is typically in those earlier phases. They might be getting, they might get very sad and cry a lot. My mom did not do that. My mom didn't really go through that phase. She went from temperament wise being pretty steady for the most part until this huge decline. And then she was aggressive, combative, hateful. And I think that's why it kicked my butt so much in struggling to try and figure out what was happening because it just didn't make sense. We hadn't seen any of that previously. Now with vascular dementia specifically, there's that emotional liability, sudden mood shifts, frustration from cognitive awareness and depression after a decline. This is, these are a little bit different for my mom. Definitely the emotional ability. We didn't see those sudden mood shifts until this most recent decline. We hadn't really seen it before that. Frustration from cognitive awareness. There was a little bit of that I would say probably about the two year, my mom's five years since her, almost six years since her diagnosis. So probably the between the two and four year from her diagnosis perspective, there was definitely some frustration. So she was still bouncing back and forth with knowing she knew how to do something, but not be able to figure it out and get kind of confused and frustrated with that. Depressions after decline. My mom did not have any major significant declines like this. And this one changed her so much in her abilities altogether that now she is on some anxiety and depression medications, but they're, they are stabilizing mood and also helping increase her appetite and helping her sleep. But depression specifically was never a part of the conversation and putting her on those medications. It was those other things. There are moments when you can tell they know something is changing and that realization can be absolutely heartbreaking for them and for you in watching them experience it for sure. Sometimes the emotional changes are harder for families than even the memory changes because the person reacts differently than they used to. They are just not who they used to be. And then I want to talk also about the hidden grief in dementia. I did an episode a couple of weeks ago about anticipatory grief that might be one of my most emotional episodes I've ever done, both for me, my own opinion of it and the experience of it for me, but also the feedback I've gotten from listeners who watched her listen to that episode. But that's a huge one. Grieving in layers, it is happening right in front of you. And whether you realize you're grieving or not, you are. It's not the kind of grief you normally have or would expect, I should say. It's a constant slow grieving that just feels like overwhelmed or just unknown. It took me a while to recognize the fact that I was in active grieving. You're missing somebody while they're still here and you are adapting constantly. You are mourning not just the disappearance of the person in front of you, but each and every one of those abilities as they begin to go away. You do not grieve dementia once. You grieve it over and over and over again. Studies show that dementia caregivers experience significantly higher rates of depression, chronic stress, and emotional exhaustion than the general population. Your grieving communication changes. Your grieving mobility loss. Your grieving independence. And you're trying to find ways to celebrate the tiny wins along the way. Some of the things we do is I read a book to my mom, not every night, but here and there I'll go in and I'll sit on the bed with her and I'll read to her. My dad has started reading the Bible with her every morning. They used to read their scriptures either together and or individually over many, many years. They've been married 58 years now. So just those tiny moments of connection that we can find. And we're really finding new ways to love and appreciate one another. Like I said, the way I can see things in her eyes, the way I can still get a little chuckle out of her, even though it's not the normal reaction I would get when I make her laugh. But I love my mom different and deeper in so many ways because of this journey. Sometimes the most beautiful moments come after life starts looking like nothing you ever expected. Here's the big piece in this episode. Things that I have experienced needing to hear and I think caregivers need to hear. So I'm going to say them to you caregivers who are listening to this. You are not failing. This is hard. Adapting constantly is absolutely exhausting. Progression is unpredictable. Perfection, impossible. And love often looks like repetition and patience instead of hugs, kisses, doing things that you enjoy together the way that you used to. Women provide the majority of unpaid caregiving in the United States and many sacrifice income, retirement savings, career growth, sleep and other and their own health while caregiving for loved ones. I have episodes out there about all of those scenarios and how they've hit me and because they are so important to be aware of and address. I want you guys to be willing to accept health, build support systems around you, document symptoms and medications and make sure that you are advocating and using your voice immediately to talk to the care providers, the doctors, the nurses, the home health, the hospice, whoever it is immediately about changes that you're seeing. And if they are not listening or responding to you, it's okay to find somebody who will. That is one thing that I've learned in this journey. Sit down and make sure your financial planning for yourself and your own loved ones, younger loved ones, yourself, your kids in the future and making sure you understand the loved one that you're caring for. Where is the money? How does it all work? How do you access it if you should need something for them? And sometimes there's still great things you can put in place to make sure that their money lasts as long as they do. You cannot pour endlessly from an empty cup and still expect yourself to function well. It is absolutely a priority, a necessity that you are protecting your health as a caregiver as well. And if you are not a caregiver, but you know who someone who is, please encourage them to focus on their overall health. Because if something happens to them, what happens to their loved one? My mom's physical therapist told me a couple weeks ago to order a back brace just to support my back with maneuvering and adjusting my mom even in bed. I just finally got around to it this week, but I'm telling you I had two days last week and that my lower back was killing me and I thought I got to get that thing ordered. Okay. So even those kinds of things are important to pay attention to. Here's my hot take as I wind down this episode. We do not prepare families enough for the realities of dementia progression. People tell caregivers to take it one day at a time while they're managing medications, exhaustion and heartbreak simultaneously. And as a caregiver, there are times that I have people saying, "Oh, just take it one day at a time. You'll figure it out and I'm going to scream and pull my hair out and their hair maybe too." That wouldn't be nice, but sometimes, okay. Caregivers in the midst of all of it just keep showing up. And y'all, that is not weakness. That is love in action. Make sure you're communicating what that's like for you. The people who are truly in your circle and want to lift you up and help you navigate and fill in the gaps for you along the way are going to be willing to listen to the weight of what you're carrying and the ones who don't great easily identified and you move on with those who are going to show up and fill in those gaps for you. If this episode resonated with you, please share it with someone that is walking and if nobody has told you lately what you are doing matters, even on the messy days, even on the exhausting days, and even when it feels invisible. I want to thank you guys for joining me again this week on chat with Nat, conversations that count. And I look forward to coming back next week with another great episode that's going to support financial preparedness and most importantly, the caregivers who listen to this show to get information, support or just feel a little bit less alone. So until then, have a great week and take care of yourself.