Blog

Speaker 1:
0:16

Welcome to Patti's Place, a place where we will talk about grief, dementia and caregiving. So pull up a cup of tea, a cup of coffee or, if you're having a really rough day, a glass of wine and let's sit back and listen and hopefully you'll find some comfort. My name is Lisa and, as I have said before, I lost my mom about 14 months ago from dementia and I've just learned so much about grief going through the process, as well as what dementia is and how to handle it, or beginning to scratch the surface of how to handle it and different caregiving techniques for it. So today I thought we'd talk a little bit more about grief. You know, one thing that I have definitely learned with the grief experience is that it is not linear. You know, a lot of people think, oh well, you just have to get through that first year and everything will be okay. And sometimes you think, oh, with your feelings. You think that sadness is the only emotion you feel during grief and really it's just one of many, many emotions that you feel during grief. You might feel sadness, you might feel anger, you might feel frustrated, helpless, fatigued, exhausted, confused, overwhelmed and all of the above and things I didn't even mention and we also think that in all of those feelings are correct. There really is no wrong feeling with grief.

Speaker 1:
1:51

Sometimes you think that if a person's going through grief, all they do is cry. They may cry, they may not cry. They may also be super hyper and have to be busy, busy, busy. Or they might be like I did, some weekends where I couldn't get out of my pajamas and I just watched TV all weekend because I just couldn't find the energy to do anymore. And all of that is okay, because you're trying to adjust to a new normal, so to speak. You're trying to figure out how to go on without this loved one in your life. Or, if you are living with dementia, you're trying to figure out this new person in your life because they're still your loved one, but they're not, because they're different. So you're having that anticipatory grief as well.

Speaker 1:
2:38

And a lot of times people think that grief just affects us emotionally, like it's just an emotional thing. But really it affects us in every single way. It affects us emotionally, like it's just an emotional thing, but really it affects us in every single way. It affects us physically, emotionally, mentally and even spiritually. On that, you know, our bodies hurt, we're tired, we don't feel good, we might feel so foggy and we don't know why Our stomach might hurt and we don't know why. You know, we just might not feel right and we just we don't know why. And it's all grief, because it's such a huge, huge thing in your life.

Speaker 1:
3:14

Grief, it's not something simple. It takes over as you try to make your way through. You know, sometimes I would feel like I still do Almost, like you can't breathe at times, or you're so overwhelmed that you just don't know what to do and you can't fight through it. A lot of times it could feel like a tidal wave, you know, because grief does come in waves, and you feel like, oh my God, I'm never going to get my head above water. Or you might feel like you're on a roller coaster. One day you're having a really good day and then you go down and then you go back up again.

Speaker 1:
3:50

Or then you might feel guilty on the days that you do feel good, you know, and then you think, oh, someone's going to think that I didn't feel right. You know how I shouldn't be happy right now, and it's okay to have those moments of joy. Or maybe you just feel angry and you don't know why you feel angry. Maybe you're angry at the person who died or the person who's sick, because why did they have to get sick? Why did they have to die? Maybe you're angry at other people that are close to you and you don't know why You're just everybody's irritable and that's all okay. It's trying to figure out this maze of what to do with it.

Speaker 1:
4:30

What I have found, and through working with grief counselors, and that is that the best thing, at least for me and for a lot of people, is to feel the feeling in that moment, even if you're like I have no idea why I feel this way, I don't know why I'm so irritable, I don't know why I'm angry, I don't know why I'm sad. But to sit with it for that moment and be like okay and let it pass, because usually then, once you let it, you feel it and you recognize it and you acknowledge it, it's a lot easier to kind of go with it. Then A lot of times, too, we think if we just push this grief away, it'll just settle on its own time. We'll just push it, push it down, we won't talk about it, we won't, we won't deal with it and it'll be okay. If I just stay super, super busy, I'll be okay.

Speaker 1:
5:24

And I mean sometimes, well, obviously, when somebody first passes, you are super busy. You don't realize everything you have to do after somebody dies and you are busy. You have to take care of so many things. But then, once everything is taken care of, you're just there. It's almost like that's when the grieving almost really begins, or that's when you really feel the loss, because now they're gone and you took care of everything, not just the funeral or the, the wake, the funeral, the services, the insurance, the bank, the bills, you cleaning out their rooms, cleaning out all of their clothes and that and you're like, wow, okay, they're really gone. It's almost like now it really begins, if that makes sense for it. And sometimes you just feel like if I just push it all away and I stay really busy, it'll all just work itself out. But then what happens is that if you choose to do that, then you might just all of a sudden start crying in the grocery store for no reason, because you saw something that reminded of them, or you hear a song, or you just start yelling at people and you don't know why, and it could just be that you've pushed it down so far that your feelings has nowhere to go with it. So sometimes I think it's just better to try to deal with it.

Speaker 1:
6:58

There's a picture that I saw about stages of grief, you know, and people think it's just this nice little stage, it's all linear, and you just do stage one, stage two, stage three, stage four, and you feel so much better and okay, I marked it, I got here. You know, okay, it's a year, I did it, okay, everything's fine. But that's just not really what happens. Not at all. It's so messed up. It's like a bunch of squiggly lines inside yourself. You know, one day you feel okay, the next day you're like I'm crying and I just feel sad, or I'm angry and I don't know why I'm irritable, or I'm just exhausted Because it's heavy with all of it.

Speaker 1:
7:45

But it's just good to acknowledge to yourself that it's okay if you feel like everything's all messed up, and it might feel that way for quite a while, and that's okay, and just tell yourself it isn't linear. It comes in waves and right now I'm drowning as that. There's a Chris Young song if you follow country music, and that's exactly what his song is called Drowning, and that's what it is. It comes in waves, and tonight I'm drowning, and that's okay. It's okay because sometimes you just need to feel that to be able to kind of get to that next feeling that you need to feel. Or just, hey, you know what, today I feel okay, or today I don't those types of things.

Speaker 1:
8:35

A lot of times, as we think about grief in waves, we also might think about it as like a roller coaster, which I kind of like that analogy because it's really how it feels, because, like well, I'm not really a roller coaster person, but I totally get it. Because you feel one day you feel up and then all of a sudden you just drop and you don't know why. You know kind of like that feeling when you're on a roller coaster, your stomach drops and you're like, oh, now I'm all the way down here, the ups and downs of the valleys with it, and we don't always get to decide the direction that we're going to go in. We, you know, some days we think we're going to do one thing and then something just comes out of the blue. Somebody might say something, you hear something, you see something, and you are back down there and that's okay. That's when you just need to acknowledge and say this is how I feel right now, this is what I need, this is what I'm talking about.

Speaker 1:
9:34

Or I don't feel clear right now, which is easy to say and hard to do in society, because we really don't like to talk about grief, we don't like to talk about what it does to us. Everybody's there in the beginning and right at the right, at the very end, and they're always there if you need anything, if you want to talk everything, but sometimes, when you really do need to talk about that person, there's nobody there or talk about how you feel. And then that's when they say, oh, but they're in a better place, or you know they're not in pain, and you want to scream because you want to say I know that and I'm not asking for that person to not be in pain, but I still miss them. And it's not an easy topic that people like to talk about, because it makes people feel uncomfortable, because they don't know what to say and a lot of times all you need is for someone to say I'm going to listen and it's okay that you're feeling all messed up today and you don't know why. It's okay.

Speaker 1:
10:40

Look at what you've been through, acknowledge it. It's okay, because I've done a lot of reading, a lot of different books on grief and that and I'm no expert by any means but what I've come to realize, especially after losing my mom, is that I'll never be that person I was before. You can't go through an experience like that and expect to be the same, and I think that's what we try to do. We try to think that we're going to go right back and just jump right back into how things were. You really can't, because you've been through this experience. That is really hard, so you have to learn how to adjust and put those feelings and what you went through into a new perspective, which is hard.

Speaker 1:
11:29

And I know, for me, I feel lost a lot of times, like just lost. I just don't know where I am, where I belong, what works, what doesn't work, like who am I now, without my biggest support person in my life? And it's hard sometimes. You know, some days I feel so overwhelmed by it and other days I go, okay, well, I'm just going to get through this minute and I have to do this or I have to do that.

Speaker 1:
11:56

With that, you know, sometimes the smallest drop, if you think you're on the roller coaster could just be the worst. For me, sometimes it is. It's the smallest things that really remind me of her or make me feel like I really, really miss her. It's not always the big things, sometimes it is, but a lot of times it's the smaller things for it. So if you acknowledge to yourself that you know you're kind of on this roller coaster and you don't know how long you're going to be up and down, but that's okay. But as it goes on, I think that it's not quite as intense. You know, hopefully, for yourself.

Speaker 1:
12:39

You know, because when you think about when you're on the roller coaster, it's like you try to brace yourself but you're still not prepared. Sometimes you just might feel dizzy and you don't know why. Or you just have this heavy feeling, or you feel like you just might feel dizzy and you don't know why. Or you just have this heavy feeling, or you feel like you just can't breathe, or you want to scream, and maybe you do need to scream, maybe you need to scream into your pillow or something and be like, oh, I just can't take it, because think about what happens when you do let yourself scream. Or you, you know, maybe for you it's that you go do a huge workout and you feel better. Or you have a big cry and you just feel better. That's okay. Or maybe you need a good laugh. Sometimes that's what you do. Sometimes that's what makes you feel better. Is you need to laugh? Maybe you're telling a story about your person and it makes you laugh and it makes you smile and you feel comforted, like they're there again. Maybe that's what you need at that point.

Speaker 1:
13:33

You know, because there's just so many emotions with grief. When we're talking about the emotional side of it, you know you feel sad, you feel depressed, you feel hopeless, lonely, you might feel numb for a while. Or maybe you feel detached. You know, sometimes you just feel detached from your family, your friends. Like you just don't feel that connection. Or, like I said, I feel lost sometimes or confused, or maybe you just feel very overwhelmed. I think grief makes us feel very vulnerable. I really do, and I think being vulnerable is really hard for most people, myself included.

Speaker 1:
14:07

You just don't know. You don't like this shaky feeling, like you're not on solid ground. Maybe you feel anxious. You just feel panic all the time, like you're just waiting for that other shoe to drop. You might feel guilty. You might feel regret or ashamed. You know you wish you could have done this or you would have, should have, could have and you may feel angry and bitter. You might feel a little relief, especially if you spent years caregiving. It's a lot to care, take care of somebody it really is. It takes a lot and you and you get to that point where you don't want them to be in pain. But then you feel guilty because you feel relief. You know it's that vicious cycle and you might feel hopeful and maybe you do feel a little peaceful because you know they aren't in any more pain with it. And you might feel all of these things within five minutes of each other. And that's okay if that's how you feel with it.

Speaker 1:
15:04

You know, a lot of times too, we think about our mental reactions, right, we might always be thinking about the loss. I know for me I had trouble concentrating. I would be at work and I would be like, oh, did I do this? Oh, wait, that doesn't make sense, I can't focus, I can't concentrate. You don't want to say that to people that I know I'm not concentrating because I have all this grief, because then people look at you like you're crazy, right, you know, or maybe time gets distorted, like you can't remember was it last week, this week, or oh, I lost track of time. I was supposed to be here at something you know. Or maybe you're somebody who's always been very organized and you just feel so disorganized like you just can't get it together, or you feel forgetful I feel that a lot too or you have trouble making difficult decisions.

Speaker 1:
15:55

I think there's a reason why they say the rule of thumb, especially like after the, for a year, after some, after a major loss, you really shouldn't make any major life decisions. Because I don't think I don't know if that you're capable of being able to make those big decisions. Because, let's face think, I don't know if that you're capable of being able to make those big decisions. Because, let's face it, sometimes the hardest decision to make is, you know, should I go to the grocery store today? Should I watch this on TV? So I mean, sometimes you don't have a choice, you have to make those.

Speaker 1:
16:24

But that, and I know too, I have a lot of flashbacks. I think about days or the weeks that I was with my mom taking care of her. I think back, you know, to how she was. I think back to how she was before she got dementia, how she was during dementia, taking care of her, through all of that, and I can't help it. And I can't help it. It flashbacks to me sometimes on different days and times, and things that I brought or things that we talked about, both types of things and I realized, well, that's all normal. Of course I'm going to think about that, especially with anniversaries or holidays, or maybe it's a song you know, or I'm just thinking about talking to her, going and visiting her, because you feel lost after a while, especially when you're taking care of somebody, or even if it was sudden, all of a sudden you're like, okay, I don't have this person to call anymore, this is who I would have talked to, or how can they not be here?

Speaker 1:
17:26

You think about those things and you run them in your head over and over and over again on those days. You know, sometimes you feel like it's a little obsessive, but maybe it isn't, maybe you're just trying to work through it and think about it with it. But those are all normal, normal reactions that you keep thinking about those types of things over and over and over again for it, because you're just trying to make sense of it all, trying to see what happens, you know, and I think that it is normal to think about how your life was before the loss, maybe during your loss and after the loss, because it is different and I think that it's okay to acknowledge it. It's okay to say that my life will never quite be the same again. That doesn't mean it's always going to be bad, and it's good to find those moments of joy when you can, even if it's something silly, it's good to find joy because really life is all of that, all of that mixed up together, the happy, the sad, the joyful, the angry, all of it.

Speaker 1:
18:38

And grief kind of really makes you see all of that, you know, and I just think that it's important that we realize that grief isn't necessarily something to be fixed. It's something that you have to go through. It's something to acknowledge what your feelings are and to say it's okay. This is how I feel today, even though it is hard in this world, because we don't always accept it. We just want people to be okay, because we don't want to deal with that uncomfortable feeling of saying I really miss this person, because people don't like to talk about it. It makes them feel uncomfortable. So when you find that person or people that you are able to talk with, or whatever makes you happy, that feels that support for you, you know you need to be with them because they'll help you through this as well.

Speaker 1:
19:32

So I hope this helped a little bit today as we go through grief and we'll keep talking about these things. So I hope you're able to, you know, find a little comfort with your little cup of tea, as my mom would say, because my mom would always say tea will make you feel better. Or a cup of coffee if it was a really rough day, a glass of wine for you and maybe you needed to read a book or sit and watch some TV and just relax and know it's okay. You know my mom used to say like in the end it'll be okay. If it's not okay, it's not the end. So I hope you've joined, hope this helped us a little bit here on Patty's Place and until next time, like I said, have a cup of tea and join us as we try to find some comfort in the world. Thanks, woo, woo, woo.

Speaker 1:
0:11

Welcome to Patty's Place, a place where we will talk about grief, dementia and caregiving. I'm your host, lisa, so grab a cup of tea, a cup of coffee or, if you're really having a rough day, a glass of wine and let's dive into these difficult topics of time. Today, I thought we might talk about grief and caregiving, you know, because we always tend to think that grief is just what happens after, but really grief is what happens before, during and after, especially with dementia. We go through grief in many different ways with it, but we do go through it as we are caregiving for our loved one with it. I think probably the first one that we go through is what's called anticipatory grief, that's, I mean, basically what it is is that we know this is not going to end good. You know, we know what the final outcome of it is, and so we anticipate these things. We also know that the person's never going to be the same as before this illness. After this illness even if it isn't dementia, you know, if it's a different type of serious illness we know that they're never going to quite be the same. And so you anticipate that grief that you know that you're going to feel, but you're also feeling it. In that moment.

Speaker 1:
1:42

You think about all the things that you used to be able to do and now you can't Like something as simple as with my mom. Her and I used to. We would shop all the time and I think about that and it's it was a loss even when she was still alive, because I couldn't take her shopping anymore. The last time her and I went shopping, usually her and I would go to the store and we would usually separate and she'd go look for things for herself and I would look for me. But the last time we went I we said we were going to go. You know she'd go look for her. I turned around and there she was and I realized that she needed to know where I was because she was confused and she didn't know where she was. So I think about that all the time when we did. You know that last time that we went shopping and I didn't realize how much I miss being there with her and shopping and what a good time we had and talking and everything.

Speaker 1:
2:45

So when you're going through the caregiving, you do anticipate you know that at some point it's going to be the end and you also grieve not only that person but in a way, you grieve the purpose that you have while you're caregiving, because caregiving becomes your life, gets centered around caregiving. For me, my weekends are the ones that are so hard, because I used to always spend so much of my weekends with my mom with it, and it's also hard. That grief that you're going through during caregiving is you have to begin to accept that this person is different, especially when you're dealing with dementia. With dementia, it is that there are two different people. They're the person that they were before they got dementia and then they're the person that they are with dementia. And it's so hard because you keep thinking about how they were before and you see what they can no longer do, what they can no longer handle, and you have to accept that you have to deal with them in a different way. And yet you're looking at this person and you're like but she's still my mom. I see her and I think about her and she's my mom and I still want to go to her. I still want that comfort. I still want her to tell me it'll be okay.

Speaker 1:
4:25

And yet there were times when she would say those things to me. She would say it'll be okay, or she'd be like are you okay? You know, and she still knew something might not be right. I really do believe and this is just my experience but I really do believe. Even when dementia patients don't know you like they can't tell you by name, they, you know.

Speaker 1:
4:54

My mom didn't know I was her daughter anymore. She thought I was just this nice girl. I really do believe, though, deep down inside she still knew me. She still knew I was somebody she could trust, somebody that she was close to with it, even though she didn't know my name. It was the same thing with my dad she didn't know his name anymore and she kept looking for him. With my dad, she didn't know his name anymore and she kept looking for him when he was younger. But she knew, she felt safe, she knew that we were somebody that she could trust, even though she didn't really know who we were with it.

Speaker 1:
5:37

And it's so hard, as you're trying to care, give and, and you realize the roles change and you have to almost you do. You have to parent them. If you're dealing with your parents with it, you have to take care of her, you know, like I had to. You know we would do her our nails together. I'd be like mom, let me cut your nails and stuff where she used to do that when I was little, or let me do your hair for as long as she would.

Speaker 1:
6:02

And another example of my mom we had a phone for her and it was a very, very simple phone and I had dialed in or programmed all the numbers that she would need. You know who she could call and she would sometimes call I'm not even exaggerating 30 times a day and it would be a lot. You know, my phone would ring all the time, and not just me. She would do that to my dad and that. And people would always say you know, you don't have to answer the phone every time she calls. And for the most part I would. You know, obviously, if I was at work and I was in a meeting or something and I, I couldn't answer, but in the back of my mind I always answered, even when it was hard and it was rough and she was upset or I had to calm her down Because I knew in the back of my mind there was going to come a night, come a day where she wasn't going to be able to use the phone anymore and I was going to miss those calls.

Speaker 1:
7:07

So that's a good example of anticipatory grief. And the day did come when she couldn't use the phone anymore, and I do miss seeing, you know, her name pop up on my phone. Luckily, I, for some reason, I just had a feeling that I should save a couple of her voicemails, because she didn't leave voicemails very often, so at least I still have her voice that I saved. So those are things too, with the anticipatory grief as you're going through in your caregiving, you think about the things that you have lost and the things that you know you're going to lose with it. And I also thought about the things that she had lost as she was going through it, the things that she would not have wanted to be like. And it's so hard because it was so not her, but yet it was her. As I looked at her, you know, and I knew yeah, you know, there is no cure for dementia. So I thought about things of what I would miss when she wasn't there anymore.

Speaker 1:
8:21

And that was hard too, because I was trying to be in that moment with her. And I think that we feel that way because, as we're trying to be in that moment and we're trying to take care of our loved one and we're trying to be in that moment and we're trying to take care of our loved one and we're trying to do what's right and we're trying to figure out doctors and medicines and what do we do? We're also grieving what was in that moment. As we're trying to take care of that person, we're grieving those little things like being able to pick up the phone and just talk and be like hey, did you see this TV show that was on? Or just have a cup of tea with my mom, you know? Or talk about whatever She'd be like. Oh, let me tell you what happened today, you know. Or she'd come over and she'd show me how to do something.

Speaker 1:
9:11

When I would come over by my mom, sometimes there was always this one recipe. My mom was a really good cook and but as she got older she decided that she wasn't going to. If the recipe was too long, she wasn't going to do it anymore. So if it was like over five ingredients, she said forget it, and she didn't like to roll things out. So she ended up giving me her rolling pin. But I would come over and periodically she there was this recipe she wanted to make. It was for a meatball pie, but she would always wait for me because she's like you roll out the dough and we would make it. And I miss those things. You know, my mom taught me how to bake and she taught me how to cook, and I miss being able to go, you know, over to her and share recipes and things like that. And as I took care of her, I could see that was something she could no longer do. When she lived with me for a while, I had to take all of the knobs off the stove because that would have put her in danger with it.

Speaker 1:
10:10

So you grieve what was how they were before? And you realize they're never going to be that way again and it's a way of life, a relationship. And you're grieving as you're looking at them and they're still alive and you think, how can I be grieving? But you are because you're thinking about what you lost and what will never be again and what is gone forever, what you lost and what will never be again and what is gone forever. And you're also grieving knowing that at some point this person won't be here anymore. And then you think, oh, that's terrible, I shouldn't be thinking those things. But you know, especially with dementia, that there is no way out. You know it's only going to get worse depending on where they're at and as they progress on the dementia.

Speaker 1:
10:57

And it's hard because no two people follow the same progression with dementia. Yes, there are different stages and there are different timelines. Well, it's not even timelines. There's different things, that symptoms or signs. I guess you know that people go through, but everybody goes through it at a different rate. So you really don't have anything. So you're feeling very lost in this maze because you don't know what's coming next with it.

Speaker 1:
11:31

And you think about how this person was and then how they are now and you're trying to figure out how do you do this, how do you work through all this? And you're trying to put that person first and yet you're grieving what you're losing and what used to be, especially if that person was like my mom. She was my person, she would have been the one I would have went to to be like how do I get through this? And there she was. And so you think about all these different things, all these silly things. As you're taking care of your loved one, you think about what you're going to lose what you already lost and you wonder just how, how do I get through all this? Because it's hard, it's really hard and I never thought about it as anticipatory grief, but that's what it is. You're grieving what you know you're going to lose, but you're also grieving what you already lost and what you're losing in that moment. You know, and it's so hard with dementia because you look at the person and, as I said, they look the same but they're not the same. So you grieve for that person as they're still alive, because you think about, maybe, how alive they were or how funny they were or the different things they used to do, and they can no longer do it, whether it's physically or mentally longer do it, whether it's physically or mentally.

Speaker 1:
13:17

My mom was unusual because she was highly mobile. For a severe stage of dementia that she was in, she was still very mobile and that was highly unusual. A lot of times the physical symptoms may come into play where they have trouble walking or things like that. With my mom that didn't happen till the end, which was highly unusual for her. But there were different things that I know she never would have wanted to be, you know, when she lost control, you know, with incontinence and things like that. My mom would never have wanted to be like that. I mean, nobody does, but those were things that that was something that would hurt.

Speaker 1:
13:57

Every time I would see that or that we'd have to, I'd have to try to get her to change her pants, you know, cause there was a stain on them. It's just. It would break my heart because that's just not my mom. And my mom would say things to me like, well, who cares, don't look, stain on the pants. I'd be like, but, mom, you know, we got to change your pants and she'd be like so what? Oh, don't look, or stop looking at it, or who cares? That's what she'd say and it was so not like my mom, you know.

Speaker 1:
14:26

And it would break my heart because I sometimes couldn't get her to change and then I'd have to ask the caregivers to help me and I would be like that is so not my mom, you know. Or I couldn't get her to change clothes sometimes with it, and it would. You know, I'd feel like so helpless that I couldn't help her and I knew this wasn't who she was. But yet this is who was the person that was in front of me now, and it's so hard because you just think about who they are as a person and who they are now, and then you think about how the illness has robbed the person of so much and yet you still want to give them dignity, you still want to treat them with respect because you still I mean, you love them, you know.

Speaker 1:
15:18

And it's just hard because there's all these emotions and maybe you're angry which is part of grief as well too and maybe you come home and you cry your eyes out because you're like how can this be and all of it's okay, like how can this be and all of it's okay. It really is. You have to get those feelings out, no-transcript, so that you can kind of take care of yourself and acknowledge that, yes, I am grieving. You know, I grieved for my mom way before she died, because I saw things, even before we were able to get her diagnosed, that I knew were not. They were not my mom. So those are things that you have to think about and things that you feel, and I think it's important that you feel what you feel in that moment, and maybe you can't express it when you're with your loved one in that moment, but you have to give yourself that moment, even if it's just going in the bathroom and crying or screaming. You have to give yourself that and acknowledge that you are grieving, because dealing with dementia is very, very hard.

Speaker 1:
16:33

It is not an easy thing for the person who has it and for the person who's taking care of your loved one with dementia. It's hard and you grieve because you see what they're losing. You can see it in everything that they do and it does make you angry. It makes you want to fight. But there's nothing to fight with dementia. There is no cure. There's nothing Except all you can do is try to give them the best help that you can, make sure they're safe which is most important and do the best you can taking care of them. You know it's hard because you know sundowners comes around and sometimes they get agitated and it's hard sometimes to calm them down. And it's okay. As you're grieving through caregiving, it's also okay. You're going to make mistakes we all do so you have to be not so hard on yourself to know that it's all right, but acknowledge that you are grieving, even when you're taking care of your loved one.

Speaker 1:
17:49

It doesn't make the grief at the end any easier, but you do grieve while you're caregiving, like I said, especially with dementia, because you grieve for the person who used to be and the person who you're dealing with and sometimes they are completely different. People Like you may find yourself saying I don't recognize this person at all, and that's okay, because they're not the same. And I think one of the best things you can do for yourself as a caregiver is to find knowledge. Like I said, the Alzheimer's website is a really good website to find other people. Support groups can help too, so that you don't feel like you're crazy and you're alone. Because it's hard.

Speaker 1:
18:46

Caring for a loved one with dementia is hard and you do grieve. You grieve all the way through the caregiving process. You don't just grieve at the very end and it's really hard accepting that this person is no longer who they used to be. And yet you know deep down inside there are moments that they are still there and I do think that they are still in there. It just gets sometimes harder and harder to find them and it's hard if some days you don't reach them.

Speaker 1:
19:21

It is, it's okay, you know, it just is, and so understanding grief is one of the ways you can try to be a little bit kinder to yourself as you're going through this process, and we'll talk more about grief and caregiving and caregiving and dementia as we continue on here at Patty's Place. Hopefully, like I said, you find this a place of comfort for yourself, a place that at least you don't feel like you're alone for it. That's what my mom would always want. She'd want people to feel comforted and not feel alone. I hope you were able to get a nice cup of tea, cup of coffee or some wine. Please join us next time right here on patty's place, yeah.

Speaker 1:
0:17

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:
1:31

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:
2:39

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:
3:16

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:
4:42

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:
6:32

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:
7:26

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:
8:13

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:
9:10

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:
10:30

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:
11:55

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:
12:57

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:
13:57

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:
14:40

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:
15:29

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:
16:09

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:
17:09

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:
18:10

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:
19:20

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:
20:06

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:
21:28

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.