Blog

Speaker 1:
0:13

Welcome to Patty's Place. I'm your host, lisa. It's a place where we will talk about grief, dementia, caregiving. So get yourself a nice cup of tea or a cup of coffee or a glass of wine if you're having a really rough day and let's just talk. Hopefully you find this a place of comfort for yourself.

Speaker 1:
0:31

I thought today we would talk about how do you talk to a person with dementia, because it is different and as they continue on with the different stages as they go through, there will be different things that happen. With the different stages as they go through, there will be different things that happen. So learning to talk with a person with dementia is definitely a challenge. It's a learning experience because you have to learn how to figure out where your loved one is in the disease, but you also have to take yourself out of the communication. What I mean is you can't talk to them like you used to talk to them, so you have to kind of figure out where they're at and what you can say. And it's a challenge because you look at the person and they look the same, but they're not. Their brain is not the same. So what I mean is it's so easy to think well, I know they're this person, I know, they know what I'm talking about, but they don't. I hear so many times when I talk with people who, their loved ones, have dementia, they're like I know, they know this, I know this, but they don't, they don't understand it, they're not faking it. They really don't know who you're talking about. When you reference somebody or you even reference an item To them, they don't know the name of it. And a lot of times I hear that people get angry because they're thinking that their loved one is being stubborn or they're just doing this on purpose. But they're not. A person with dementia is never doing anything on purpose.

Speaker 1:
2:12

It's hard to think about that your loved one doesn't remember who you are or doesn't remember simple things like how to turn the TV on and off, how to turn the lights off. I remember times when my mom stayed with me and I had to tell her five, 10 times in a row here, mom, just turn this switch off. And then she'd say what do I have to do again? And I'd be like here, it's right here, turn it off, the TV remote. You know a lot of times too, the TV remotes, the buttons are really small, so that's frustrating anyway, but I'd have to be like here, just turn this off right here, and then sometimes I would just do it for her. She wasn't doing it on purpose, she really didn't know. That's how bad her short term memory became. So it's hard to think that you know.

Speaker 1:
3:01

Like I said, your loved one doesn't remember. And then it's frustrating because you're thinking how many times do I have to tell him how to do this? You know, I remember I was trying to show my mom how to just dial her cell phone and my mom, she only had a very simple flip phone and she only used her cell phone for emergencies. But I remember one time I literally probably spent almost 20 minutes with her showing her over and over and over again how she could call my dad, and she really she just didn't understand and so I was like it's okay, you know. So I got to be real honest.

Speaker 1:
3:39

It makes me angry when I'm talking with caregivers and they say I know that, I know they know this person or I know they know how to do this. No, they don't. Their brain doesn't think about it, as their brain is shutting down Different parts of their brain, is shutting off the neurons, or I don't know the correct words so I shouldn't say it. It literally is shutting off. They're on like this. It's almost like think about it like Groundhog Day. It's like the same thing over and over again, but they don't remember. So they're not trying to be stubborn, they're not trying to be difficult.

Speaker 1:
4:18

So I think for me, what I did was is I tried to think about the disease from my mom's point of view. I thought about it as her brain was dying. So think about can you imagine how scary it must be that you no longer know how to do something so simple as to turn off the lights or turn off the TV? Think about that for a second. Put yourself in that position. What if you honestly couldn't remember how to turn off the TV, how to use a light switch? How would you feel? And then you have someone looking right at you saying what do you mean? You don't know how to do it.

Speaker 1:
4:59

So one of the first things that I did, or one of the first things I did, or one of the first things if you go to the Alzheimer's Association website, says with communication, when you're trying to communicate with the person who has dementia agree, don't argue. Think about it like this. Why is it so important as a caregiver that you're right? Does it really make a difference if your loved one is, you know, calling a cup a cookie? What difference does it make? Because if you're telling a person with dementia they know something, you're arguing with them. If you insist that they know so-and-so and they honestly don't remember, you're arguing with them. And a lot of times when you begin to argue with a person with dementia, they get agitated and sometimes it escalates to where they get aggressive and now you have to calm them down.

Speaker 1:
5:59

So the best thing that I could tell you that worked for me was you have to enter their world. I cannot emphasize this enough. A person with dementia is no longer in your world. They're not, and I know how hard that is. It's hard to accept that they're not in the same world as you anymore, but they're not. They're in their own world. They may be back to when they're a kid. They may be back to when they're in college. You, as the caregiver, have to enter their world. If you want to connect with them and make your caregiving experience a little easier, then enter their world, their world. Don't expect them to be in your world, in the real world anymore, because they're not.

Speaker 1:
7:03

And I'm going to say this it's okay to lie to them. What I mean is is you don't always have to tell them every little thing. An example of this is that my mom didn't know she had dementia. An example of this is that my mom didn't know she had dementia. If someone even hinted she had dementia, she would get very, very upset. So I realized what was the point of making her accept that she had dementia. It was one of her symptoms. She just didn't know she had it. A lot of people with dementia don't realize they have it. It's a common symptom. You can look it up on the Alzheimer's website. There's even a name for it which I can never pronounce. So what would have been the point for me to continually argue with her and make her accept she had dementia? That whole experience would have been awful.

Speaker 1:
7:49

So I never said she had dementia. I never told her that. Even when she we had to, when I had to take her to doctors and stuff, I would tell her it was something about something else. Why, why upset her? Now I realize I know some people have a hard time with this, because you don't want to lie to your loved one, and I get it. I didn't want to lie to my mom. You don't want to lie to your loved one, and I get it. I didn't want to lie to my mom, but I kind of really wasn't lying to her. She didn't understand anyway.

Speaker 1:
8:18

Because, think about it, why is it so important that a person with dementia know they have dementia? Because it isn't about the person who has dementia, it's about the caregiver. It's about the caregiver's feelings, it's not about the person with dementia. Because they don't understand. Now, most of the family members that I met when my mom was at her memory care facility an example of this is they didn't tell their family member they were entering memory care. Why? Because it would have upset them too much. Yeah, so we all lied, but it wasn't a lie that hurt them, it helped them, it kept them safe. So, like my mom, after a few days she thought she didn't even remember that she didn't live in memory care anymore. She thought she was at her grandma's house. Some of the residents thought they were back in college. Some thought they were in a building their employer bought for them. That's even how they that family member got them there. So you see, it didn't hurt them and it made them happy and made them feel safe. So you have to think about it from their point of view. To think about it from their point of view.

Speaker 1:
9:36

And what's hard is, and what I'm trying to say, is that talking with a person who has dementia is being in the present moment with them, because a person with dementia only has the present moment. They don't remember the few minutes before and they don't think about the few minutes later. So if you're trying to tell them, oh, we got to do this, this, this and this today, they're going to ask you what do we have to do again today? Where do we have to go again today? So then you're going to get angry because you're going to say I told you this, but they really don't remember because their short-term memory is gone. So make it easy on yourself. Making a person with dementia be in our world, in my opinion, is cruel. I understand wanting to hang on to our loved one as we knew them Believe me, I do but you have to go on this journey with them. You have to meet them where they are, and every person with dementia goes on the journey differently, but they share similar stories A lot of times, as you talk with other family members who have their loved ones who have dementia or had dementia, you'll hear how they thought that their family members were stealing money from them or their significant other was cheating on them.

Speaker 1:
10:58

It's okay to find a story that calms them down. My mom she believed that my dad was stealing all her money. My dad even wrote out things for her to see where all the money was, and I would show that to her too, but that never seemed to calm her down. She was convinced he was stealing all her money. Finally, I said to her one day I said you know what, mom, don't worry about it, I can get your money and she's like you can. And I said yeah. I said I live across straight from the bank. I said and me and Annie, her little dog, annie, who was her whole world. I said and me and Annie, her little dog, annie, who was her whole world. I said Annie and I will go over to the bank and we will get your money for you whenever you need it, and she's like you will. And I said yes, and that calmed her down every single time. So it's okay to find a story that calms them. I mean I could have went on and on and argued with my mom and said, oh, my dad's not stealing that money, he's not. And that just would agitate her and get her more upset, I guess for me.

Speaker 1:
12:02

I realized I couldn't cure my mom. There was nothing I could do. Dementia was never going to be over, it was never going to be cured. But all my mom ever wanted was she wanted to have peace in her life. So I decided my goal was to give her peace because that was all I could give her. I couldn't stop what was going on in her brain. I couldn't stop what was going on in her body, but I could try to give her peace when I was with her and keep her safe. Now, it wasn't always easy when she got agitated or upset, but I would do my best to redirect her, to calm her down. Some days it was easier than others, but but I just wanted her to feel safe and feel peace. And I realize that what I'm saying is not easy. But I found, looking back now especially it's been over a year since my mom passed and even though I still miss her every day I realize that I was glad that I took that approach because I had those moments with her, glad that I took that approach because I had those moments with her. I still think about I miss her.

Speaker 1:
13:14

You know, going and visiting her at memory care and, yes, I had to calm her down several times and sometimes it took me an hour, but I would always tell her it was okay, and sometimes she'd grab my hand and she'd be almost crying and she'd be like don't leave me, don't leave me, help me. And I would help her and I tell her I'm not leaving you, it's okay, I'm all right, I'll protect you. And it would slowly calm her down and sometimes I would redirect her. Sometimes, you know, she carried a baby around. That made her feel safe. So I'd always make sure she had her baby or something else. Or maybe I'd put something on TV or play music, or sometimes I just sat with her and told her it was going to be okay, I was here and she was safe, because that's what she always said to me.

Speaker 1:
14:06

And so I can't express this enough when you are caregiving for a person with dementia and yeah, sometimes they do get aggressive and agitated, but you have to think about it from their point of view, think about how scary that is, that you no longer know that. Your world is so foreign to you you don't know how to do anything anymore and they're looking for someone to tell them it's safe, just like a toddler, just like a baby. That's why a lot of times they do go back and they look for their parents, even when their parents are dead. And my mom would ask for her mom. But I never said to her well, your mom is dead. I didn't say that to her. I'd be like, oh, all right, I'll call your mom. And sometimes I thought, oh, who could I call? That'll tell her it's her mom, because what harm would it do? She wasn't going to remember anyway. So I cannot urge you enough to.

Speaker 1:
15:06

When you're with that care, you're with your loved one, and I realize it's very hard when you take care of a loved one 24 hours a day. But think about it from their point of view. I don't want to say have fun with it, but sometimes people with dementia say the funniest things and sometimes you just go along with their story. What harm does it do? As long as they're safe and they're in the house and they're protected, what difference does it make if you know, as long as they're safe and they're in the house and they're protected. What difference does it make if they're telling you so-and-so came, so what Say they did, what they look like?

Speaker 1:
15:41

You know, sometimes I had the best conversations with my mom when she was telling me stuff that I knew wasn't true. But I was able to be with her in that present moment and I do. I cherish those memories now because she wasn't aggravated and I do, like I said, it makes me angry and it upsets me when I know people that they're taking care of family members who have dementia and it's so important to them that their family member understand this and they know. They know this. No, they really don't. So you're creating all this drama and all this anxiety and all these feelings when it comes down to the caregiver being able to accept that your loved one has dementia and you're grieving for them in that moment, even though they're still alive, and you're taking care of them. And that's really, really hard. It's very hard. Again, I'm not saying any of this is easy, but if you can remember and again, there's lots of different tips on the Alzheimer's Association website Agree, don't argue, especially if it's about something so silly and if your loved one really won't go somewhere, then don't go.

Speaker 1:
17:07

You have to make adjustments. They are no longer in the same world as you. You have to enter their world and so if others don't understand or they don't like it, well, you're taking care of your loved one, and if it's going to be too much for that person to go, then they don't go. They're sick. It's no different than if a person had cancer. But people look at dementia differently and for some reason they force the person with dementia to do things that really just you know. They can't handle crowds and things like that and that's why they can get agitated. So as you begin this journey and as you're communicating, think about it from their point of view. Think about how scary that must be, and if you can think about it like that and try to agree with them again, as long as their safety's first.

Speaker 1:
18:10

And sometimes she can have some fun, like I said, the example with the bank. I always calmed her down. I'm like Annie and I, me and the dog we'll just go to the bank and we'll get your money out, and she's like you will. I said, yes, we will, and that made her feel better, probably because she knew I was agreeing with her, probably because she knew I was agreeing with her. And again, what difference would it make if I would have kept arguing with her that my dad wasn't stealing the money? I knew my dad wasn't stealing the money. My dad knew he wasn't stealing the money. And it calmed my mom down, it made her feel safe that somebody was listening to her.

Speaker 1:
18:49

So I want you to think about those things when you're talking to the person with dementia Because, again, they're in a very scary world. So agree with them, enter their world. Don't make them enter the real world, because they're not there anymore and it's very hard as a caregiver to accept that. So I want I'm going to talk more about communicating with people with person with dementia here at Patty's Place. I would love to hear from you. Please send me an email if you'd like.

Speaker 1:
19:20

If you go on to, if you're listening, I accept emails from there to talk about any questions. If there's things you want me to talk about, questions you want me to answer. If I don't have the answer, I will find the answer for you. I'll do my best for it. Like I said, I want this to be a place of comfort, a place where you can find what you're looking for. At least know that you're not alone when you're dealing with grief or dementia and caregiving, that there's somebody here that listens and understands with it, because dementia is very, very, very difficult, and so is grief, and so is caregiving for it. So please reach out. I'd love to hear from you as we talk about it. So I hope you enjoyed this edition of Patty's Place. Yeah, I hope you enjoyed your cup of tea, your cup of coffee or a glass of wine, and I will see you next time right here on Patty's Place.

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.