Patty's Place

Navigating the Fog: Understanding Dementia Beyond the Label

• Lisa

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Speaker 1:

Welcome to Patti's Place. I'm your host, lisa. This is a place where we will talk about grief. This is a place where we will talk about grief, dementia, caregiving and everything in between, everything in between these topics. I'm your host, lisa, as I said, and Patty's Place is a way for me to honor my mom. My mom passed about a year ago from dementia Alzheimer's and I realized through that whole experience that there's so much about grief and dementia and caregiving that not everybody knows. Even though it's an individual experience for everybody, there are a lot of things that are similar. So I hope that this brings you some comfort, some peace, hopefully find some resources or just feel like, hey, you're not alone. So grab yourself a cup of tea, some coffee or, if it's a really rough day, a glass of wine and let's talk today. So today I thought we would talk about what is dementia. I think that that term is used so much that sometimes people don't understand what it is. This is just a brief overview of it. There's so much more to it. There's tons of research out there and resources. I like to go to the Alzheimer's Association website. It really gives you a lot of information and it breaks it down really easy.

Speaker 1:

So what is dementia? Because you hear that word a lot and a lot of times, people, as you get older, you think, oh, I'm forgetting things. Do I have Alzheimer's? Do I have dementia? Well, not necessarily so. Dementia is a general term. It's for the loss of memory, language, problem solving and other thinking abilities that are severe enough to interfere with your daily life. So Alzheimer's is the most common cause of dementia, although, to be honest with you, people don't actually get diagnosed with Alzheimer's until after they die and they do an autopsy. So think about it like this Dementia is an umbrella. It's an umbrella term for loss of memory and other thinking abilities, like I said, that are severe enough to interfere with your daily life. But then there's also different types of dementia, and I think that's where people sometimes get confused, and it was confusing for me too. I mean, believe me, I'm still learning about this, even though I lived through it with my mom. So if you think of dementia the word as an umbrella, now there's different types of dementia.

Speaker 1:

The one that most people know about is Alzheimer's. Then there's also vascular. Vascular has to do with the heart. There's Lewy body, which, if you remember that was one of the forms that they believed Robin Williams had based on the news reports. There's also frontal temporal lobe. There's another form that could be from Huntington's, and then there's also mixed dementia, and that means that dementia could be from more than one cause, and it's just such a complex thing. So you also have to think about it like this too.

Speaker 1:

It's not a single disease. It's an overall term to describe a lot of different symptoms that somebody might experience if they're living with a variety of different diseases, including Alzheimer's disease. So a lot of times they group these under the general term dementia, so it gets really confusing on things. So dementia, they think, is caused by abnormal brain changes. To be honest, they really don't know what causes it and there really isn't a cure for it at this time. There's tons of research going on and hopefully at some point someday we will have a cure and we'll also know what causes it. They do know that they think it has to do with plaque on the brain. Now, what causes that? Nobody's really sure at the moment. So what happens with dementia is that the symptoms they trigger a decline in your thinking skills or, as a lot of times you'll hear, cognitive abilities, and these are when they're severe enough to impair your daily life and independent functions. They could also affect a person's behavior, feelings and relationships. So it's not just, oh, you forgot a date, or you can't remember where your keys are, or you're like, oh, what's the name of that? Those are all normal, everyday aging. We all have it.

Speaker 1:

With dementia, it becomes very apparent with things. With my mom, she used to be a great cook and she didn't know how to use. She just didn't know how to cook anymore. And you might be like, well, that sounds crazy, right, but I remember one time a story this really happened she wanted to make pizza and so normally she would get these you know they call them pizza setups and they were with the crust and you know the sauce and everything, and they were round, and normally she would just pull out our round pizza pans and she would make the pizza and put it in the stove, you know, and we'd have pizza. She'd been doing it for I don't know 30 years doing this. Well, she couldn't find the round pans and so what she did was is, she flipped square pans, so she didn't just put the crust on the regular pan, she flipped it. So it was. She flipped it over and she put the crust on the regular pan. She flipped it. So it was. She flipped it over and she put the crust over the pan. Well, what happened was is when she put it all in the oven, the oven started to smoke and everything and the fire alarms went off and that. And obviously we didn't have that pizza. But she didn't know that she did that wrong. And what she said to me, she pulled me aside and she was like she accused my dad of hiding the pizza pants. So it's those types of things. Or I remember she had it was a cookie. Somebody had given her a cookie, one of those really nice sugar cookies, and she had it sitting out like her other. You know knickknacks. And when I said to her it's a cookie, she was like that's not a cookie, it's you know. So it's things like that.

Speaker 1:

Or my mom used to read. She was a big, big reader. She would have a book in every single room and she just she, she kind of stopped reading. As a matter of fact, she stopped herself from driving. That's another big one too. But I think what happened was my mom was never a big driver, but she used to like to drive to the library and I think she must have got confused or lost or that. And it just so happened to be at the same time that they my mom and dad bought a new car, and so she yelled at my dad and told him that she was never going to drive that car, it was too big. Why did he buy that car and everything? And looking back, I think that was her way of realizing she must have got lost or something like that, because it was so upsetting to her that he bought the car and she was with him when he bought the car. So it's kind of like things like that.

Speaker 1:

My mom also. She was a big true crime reader. She was big true crime watching shows and mysteries and that, and she was so good at it Like she could figure out the killer when you'd be watching a mystery movie before anybody else. And I noticed when I'd be watching TV with her, she couldn't follow because she just couldn't follow it anymore and she kept asking me the same questions over and over again about what was this person and who did that. You know who is this. So it's kind of things like that that you start to notice. And she started repeating the same things over and over again, telling the same stories and stuff like that. So it's kind of like those types of things that you start to notice, not just you don't remember something. Those are all normal Now when you're breaking down dementia.

Speaker 1:

Like I said, there's so many different options not options. There's so many different types of dementia. Now, according to the Alzheimer's Association website, alzheimer's disease accounts for about 60% to 80% of cases. Vascular dementia, which they define it as it occurs because of a microscopic bleeding and blood vessel blockage in the brain. That's the second most common cause of dementia. So those who experience the brain changes of multiple types of dementia, typically they will say they have mixed dementia and there's many other conditions that can cause symptoms of the cognitive impairment, but they're not necessarily dementia. Some of them are reversible with that. That's why it's so important that you go to the doctor to try to figure this out. Now, that's not always as easy as it sounds.

Speaker 1:

My mom refused to go to the doctor. She would go to the doctor for all kinds of stuff, but she she didn't know she had dementia and that's also another symptom. It's pretty common actually. Even if you go on the Alzheimer's website or other websites about Alzheimer's. It's pretty common. It wasn't that she was in denial, she just really didn't know she had it. And I tried to get her diagnosed. We went to our doctor, our regular physician, and he was just going to try to give her the simple there's a couple simple memory tests that they can give you. It's just questions they ask you. She refused to answer the questions, she just refused and I knew she knew the answers to a few of them. She refused to answer it. I tried to get her to go to a neurologist to get her diagnosed. She hung up on the neurologist. She would not go. So it is a struggle to try to get that dementia diagnosis, even though the hard part with dementia is you can get them, you finally get them diagnosed, but there really isn't anything they can do for you. So it's one of those that, okay, you have the diagnosis but it makes you feel even more helpless with it.

Speaker 1:

How we finally got my mom diagnosed was she didn't know who I was and she didn't know who my dad was, and so, luckily, my parents had done living wills and they had done powers of attorney ahead of time. They had decided to do that based on some family different things that happened with our family and they decided they wanted to do that, based on some family different things that happened with our family, and they decided they wanted to do that. So that way, people, you know, I had it, my dad had it, my mom had it for that, so we would know what to do. My dad was finally able to convince my mom to go to the emergency room and unfortunately this was during COVID. So it wasn't the best time, but it's what we had, as I said to my dad, because my dad had a really hard time. He just kept saying that my mom was, she wasn't that bad. She just wasn't that bad, even though I knew she was, you know. So finally, when she didn't know who he was and she didn't know who he was and she didn't know who I was, okay, we have to go get her diagnosed. This is a problem. As soon as we took her to the emergency room and, as I said, it was during COVID we weren't able to be with her. So they diagnosed her within a few hours and she was already in moderate to severe with it.

Speaker 1:

So, like I said, it is not an easy thing to get somebody diagnosed. Hopefully you're able at some point if you notice these things, you know that you can get them to even just their primary doctor and they can give you a simple test to see. And then a neurologist has some other simple test and then typically what happens is there is a longer test that people will go to. It takes about two hours and they can kind of they can diagnose more as to how far you are and things like that with dementia. For that. So a lot of times people sometimes will think, oh, dementia, you're just going senile or something. It isn't. It is like I said, it is different for it. So some different. If you're like, okay, that's great, but how do I know what do I look for? So again, if you go on the Alzheimer's website, alzheimer's Association, these are some symptoms or signs of dementia you can look for.

Speaker 1:

It's that short-term memory and what I mean by that is they honestly don't remember, like you just said something five or 10 minutes ago and the person doesn't remember and they ask you the same question over and over and over again. They can't keep track of their purse or their wallet. They keep losing it, or their phone. You know not. You know, some people just always lose their phone. But this is different. It's like consistently with it, somebody who used to always be able to pay their bills on time and keep track of those things. They can't do it anymore. Like the bills become late, they don't know where they are, they don't know how to keep track of it, planning and preparing meals, like I gave that example with my mom, with it Remembering appointments, like she just forgot, she didn't know. My mom used to be somebody who was always good about remembering people's birthdays and holidays and all of that, and she didn't remember anymore and I had to tell her and she just didn't.

Speaker 1:

Or they get confused really easy, especially like traveling out of the neighborhood. There's a lot of stories where people they got lost. They were walking or they were driving and they didn't know where they were anymore. And one story with my mom. My mom and I used to always like to go shopping together and usually we would go to the same store over and over again and I'd go in one section, she'd go in another section and then we would meet. And I noticed, probably one of the last times her and I went shopping, I turned around and there she was like right by me. She didn't want to go look for herself or anything, and I think it's because she felt she felt confused, she didn't know where she was and she needed to hang on to me. So she knew you know. So she felt safe.

Speaker 1:

And I think too, a lot of times when somebody has dementia it's hard. It's hard on the person, it's hard on the family members, hard on the caretakers, and I think we have to sometimes think about things from the person who has dementia. As they progress, it's hard for them to be in groups or in stores or things like that, or even coming to holidays. It's hard for them because there's too much going on and they can't follow. It becomes very overwhelming for them with it and the symptoms are progressive. So that means that it might start out slow, really slow, but they gradually will get worse over time.

Speaker 1:

So when someone has that diagnosis it's frustrating because it isn't like when you hear cancer. You think, okay, I can do steps one, two and three and maybe I'll go on remission or maybe this will cure me. Or oh, this has a good rate dementia. They're just there, isn't there, really isn't. So they really don't know what causes it right now. There's lots of research and lots of clinical studies. They just know that somehow the damage interferes with the ability of the brain cells to communicate with each other.

Speaker 1:

One of the I've had some people describe it to me one of the hospice nurses and one of my mom ended up in memory care and one of the memory care directors explained things like this. The memory care director said think about it like this A person with dementia is relearning everything every five minutes because they don't remember. So they're constantly relearning, which is why a lot of times they're tired and they sleep a lot. The hospice nurse once said too that. Think about it like this their brain, the circuits, are like shutting down as they click off on different things. So dementia is not an emotional thing, it's not a mental health thing. It is a physical disease with the brain. Their brains are dying in many different ways, if you need that kind of an image for it, and all of them are different. There are some things that are similar that people have Symptoms.

Speaker 1:

A lot of times people with dementia they think that you know their significant other is cheating on them or they think that they're stealing their money. My mom was convinced my dad was cheating on her and she was convinced that my dad was stealing all her money. My dad was not doing either one of those things, so what he did with the money part is he even wrote it all out for her to show her, and then he sent that to me and I would show her that. But she would get really upset because she was just so convinced he was stealing from her. One of the things that finally helped with my mom and for some reason this worked. She listened to me where I would tell her that she didn't need to worry about her money because I lived across the street from a bank and I had access to her money and if she needed it I could go get it Me and her dog could go get her money at any time, and that calmed her down and made her feel happy.

Speaker 1:

So sometimes I think that when you're talking to a person with dementia, if you realize they're having those two different things, you sometimes just have to find what will make them calm down, even though you know that those things aren't happening. But to them it's real and those are things you need to think about. So a lot of times too, most of the changes with dementia in the brain, they're permanent and they worsen over time. So you need to think about it like that. So the thinking and the memory problems, they're caused by some conditions. They could be depression. There could be some more medication side effects and different things and, as we talked about, the diagnosis typically has to come from a neurologist, a psychiatrist, a psychologist or a geriatrician. Most people go with the neurologist for that. So it isn't something that I just think that when you're looking at dementia, it's definitely something you want to. You want to find the right thing. You don't want to argue.

Speaker 1:

And it was hard for me because I knew something was wrong with my mom and I couldn't get her diagnosed. She would not go and I knew it wasn't my mom. I could tell these things were more than just normal age and my mom wasn't even that old. When my mom passed she was 10 days short of turning 76. And I know that she had these symptoms probably for close to seven to 10 years. So she was in her mid 60s. She was considered more like early onset. She was not old and it killed me that I knew she this wasn't right, but I couldn't get her to go to the doctor and my dad had a really hard time with getting her to go because he just didn't want to accept it and so it's hard.

Speaker 1:

It's not an easy thing if you see that your loved one is suffering with stuff. So the more you can find out about dementia and research and really look at it and don't get angry with them, hopefully the easier it is to figure out how to get them help as best as you can for those things for it. So, as I said, if you think about dementia, it's an umbrella and there's the different diseases that can, different forms of dementia that are underneath it. So dementia is the umbrella. Then the different types are Alzheimer's vascular, lewy body, frontal, temporal, and then there's some other ones that might include Huntington's, and then there's also what's called the mixed dementia, where they may have dementia, might be from more than one cause with it, for more than one cause with it, so, and they typically cannot diagnose Alzheimer's until the person has passed and they do a pathology on their brain with it. So I know a lot of times people use those words back and forth dementia, alzheimer's and all that. So dementia is the umbrella and the different types.

Speaker 1:

So as we continue on with Patty's Place, we'll go into more details on dementia and things like that, because I just think it's such a big topic that we need to talk about, but I didn't want to overwhelm you, so hopefully this has been informative and next time we're going to talk about some things on how to take care of people with dementia or different tips for it. So I look forward to seeing you next time right here on Patty's Place. Woo, woo, woo.