Patty's Place
A place to talk about grief, dementia and caregiving. A place to find comfort when you are going through a difficult time.
A place to know you are not alone as you go through this difficult time.
Patty's Place
When the caregiving stops, how do you start again?
Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I so grab a cup of tea, cup of coffee. It's been a really bad day. Grab a glass of wine and know you're not alone in your journey. My name's Lisa, and I created this podcast to honor my mom who passed away almost two years ago from dementia. And I just feel like there's not enough, we don't talk enough about the grief and in dementia in general, and also about caregiving. So today I wanted to talk about what does a caregiver do when there's no one to care for anymore? You know, for for the last how many months or years of your life it's revolved around your loved one's care. And now your loved one is gone. So what do what do you do? What do you do with all the time you have now? And there's this weird feeling that overcomes you because you just don't know what to do. Your life revolved around doctor's appointments, medicine, making sure the person ate, you know, uh changing diapers, all different things. And now they're not here anymore. You feel lost, you feel alone, and and you were busy, busy, busy, busy. And then you were taken care of not only them, but then you were keeping people in the loop. You know, people were texting you, calling you, how are they? And the more that the sickness, the illness, and they decline, the more people call you. So you feel like there's more information you have to say. And now it's just stillness, it's just eerie stillness, it's just quiet, and everyone's gone. Everyone is gone, and what do you do? And you know, because no one's calling you anymore, asking you for updates, and they don't really ask you how you are anymore, right? After probably the wake in the funeral or the services, after about a week or so after that, everyone goes on with the rest of their life, but your life still stopped. You have this big aching hole, and you're like, what do I do now? It's just quiet and and it feels weird. You feel like you should be doing something and and you don't have to do it, right? And you can't shake that feeling that you're forgetting something, there's something else you should be doing, you should be busy, there and there just isn't anything. And it's really a lonely feeling because your loved one's gone, but you're still here. So what do you do now? And and then everyone keeps asking you, like, well, when are you going back to work? What are you gonna do now? And you just want to scream, like, I don't know, I just don't know what I'm gonna do. And yet you don't say that, you just go, Oh, I don't know, yeah, I guess I'm going back now, or I'm not sure yet, or and then you think about all the other things you have to take care of, especially if you're like the executor of the will or things like that, and you take care of those things, but you still think about, well, I I should be going through their clothes, or I should be going through their things, and sometimes that's overwhelming to do too. And all you do is you feel lost and you feel empty, and you think, is this normal? You know, what what do I do? What can I do? Type of a thing. And I found in my grief journey, talking with my grief counselors, and that, and they said, Well, the first thing you have to do is take care of yourself. And you're like, Well, great, right? I was like, okay, great, but I I don't I don't know how to do that because my priority for so long was taking care of someone else. So how do I take care of myself? I don't know how to do that anymore. Because even though when you're in the middle of caregiving, everyone says you gotta prioritize yourself, you gotta take care of yourself. Let's be honest, you don't do it as much as you probably should. You might get a day here, an hour there, maybe 20 minutes here, but really your priority has been your loved one. And it's not easy. And for me, it it was knowing whatever I was feeling was okay. That's what my grief counselor taught me. That it was it was okay if I felt lost. It was okay if I wanted to scream, it was okay if I felt sad. It was even okay if I felt happy for a few minutes. It was okay. And maybe, maybe you're like, I just, I want to scream. I just, I can't take it. I want to scream. Well, find a safe place to scream. You know, maybe you go outside and you scream, or maybe you you scream in your pillow if that's what makes you feel better. Maybe if you're like, you know what, I want to go for a run, or I just I want to go to the pool, or I want to go to a spin class and I just want to work out all this feeling. If that helps you, then do it. Maybe it's just, I'm just gonna listen to some music. Maybe you're listening to a bunch of sad music and it makes you feel better because you get a good cry out. Or maybe you listen to some angry music and you feel better because you're like, oh, I just feel better now, you know. Um, and maybe, maybe for you you want to write in your journal, or maybe even just like play with Play-Doh like you did when you were a kid, or or do ceramics, or some something crafty, or maybe just play with your dog, or maybe you just pound your pillow because you need to hit something. If that's what makes you feel better, then that's what you should do. And I know you might be saying, okay, but I don't know how to take care of myself. You know, you you think sometimes just saying, I don't know how to take care of myself, that's a great start because you say, I don't know how to do it. So try to remember, go back way back when the thing about think about the things that you used to like to do. Even if it's, you know what, I'm gonna take a longer shower or soak in the tub, or you or you're gonna read that book that you've been wanting to read. And for me, it was hard to concentrate at first. Like I couldn't really read. Like I'll be honest, work was hard for me. And you know, I made a ton of mistakes because I I I couldn't focus, I couldn't concentrate. And I took a lot of naps because that's what I needed to do. Maybe that's what you do. My grief counselor also had told me that it was okay to play the games I like to play on on the iPad at night because sometimes I did. I just needed to zone completely out. Sometimes I like to color on the coloring apps, and that relaxes me. So if you played a game while you have something on TV, or maybe you're just playing the game and nothing's in the background, and if that helps you, then that's what you should do. I know some people they always want to, they have to keep doing something. That really wasn't the case for me. For me, it took a lot of energy to do things even when I wanted to get them done. I I still struggle with that a year and a half later. I still am like, I want to do this, I want to declutter, I want to clean this, I need to take care of that. And some days I'm just exhausted and I I can't seem to get to it. And then I'll have a day where I feel energetic and I'm able to do it. And I learned that all of that was okay because everybody's grief journey is different. And it's hard when your life had been surrounded, it was centered about taking care of this person, and now the person's gone. And for me, also that I found being compassionate with myself was a hard thing to do because I always tend to put everyone else's needs first. And honestly, being nice to myself is something that I'm continually working on. I I have a hard time learning how to do that and and saying that it's okay for me to want to do XYZ, and I need to do this first, and then I can catch up with you, or then I can do this for you. It's a it's a work in progress for me with that. I also learned it's completely normal to feel like you're having a panic attack, just thinking about, well, what do I do now? Because the world feels so overwhelming. Like there's so many things that swarm in your head, and you think I should do this and I should do that, and what should I take care of next? And and everything. And it it's okay, you know, and you also think about who am I without this person in my life? You know, I I for me, I I'm no longer my mother's daughter. I mean, I am, but I'm not. I'm a motherless daughter, you know, and who am I without my mom? I mean, you think about those things because your life's just not the same with it. And I for me, I think it's a hard road to walk down. And I think it's even harder to silence the people who tell you what you should be doing or what you should be feeling. You know, there's always somebody that's there to say, oh, well, you should do this and you should do that. And what do you do that? Why don't you do this? Get a dog, sell the house, do this, you know, and you're like, wait, what? I'm lucky I can focus and you know, make sure I eat today. You know, it it's hard. And I also found too that it I to me, I find this very funny that people always tell you, oh, I'm here for you. If you need anything, just call. But what they really mean is that within the first two weeks, and then their life goes on, even when your life feels like it's stopped and you just don't know what you're supposed to do. And it's hard, it's hard to find it, and it's hard to take care of yourself, you know. So I found some different things that if there are things that little things that you can do, like I said, to just try to take care of yourself, and even if it's only for a moment, you know, maybe if you need some comfort or so you just have low energy and lone brain low brain power activities, which I like that for self-care. Because sometimes people are like, it's not always the massage or getting your nails done or anything like that. You know, sometimes it's just listening to music or nature that sounds that calm or uplift you. You know, you might want to avoid some of the music or sounds that that might activate your grief. Maybe you just head to a comfy chair or your bed just to sleep. Or maybe you watch a show, a movie, or random YouTube videos that calm you or uplift you. You might want to avoid things that activate your grief in that moment if you're just trying to rest. Drink water is really important. Staying hydrated is important. Something simple as that. Stretch, because we forget to do that, right? And sometimes people find that when they're in the middle of this and grief, they don't feel hungry. But it's important that you eat something, eat a little bit, even when you don't feel hungry, because that is important. Like I said, maybe play a relaxing game on your phone. Or maybe if you have some comforting rituals or spiritual practice, maybe you meditate or some breathing exercise, you can do that to help you for that moment. Sometimes I'll find myself sitting at my desk and I'm like, okay, just breathe for a second. Block the world out for a second. It'll be okay. You know, color or draw if that's what helps you. You know, maybe you want to see if the moon or the stars are out, you know, because there's been a lot of different things out lately with they're telling you to look for the solar system and the moon. If that's something that brings you peace, do that. You know, or maybe you just want to find something comforting to hold on to, a pillow, a blanket. For me, sometimes I I kept one of the blankets that was on my mom's bed before she passed. And I I have it on my bed still. And some nights I just have to hold it and it brings me comfort with it. And sometimes it's just giving yourself some compassionate thought. Like maybe you took a shower today. It it's not always, you know, like I said, going for that big self-care. Maybe it's that, hey, I I I ate lunch today, or I got more cup more water in today than I did before, or I made it through work and I didn't cry in the bathroom. That's taking care of yourself. And you need to give yourself these good, good pats on the back and can tell you you're doing okay, you know. So you may want to, you know, give yourself some time out, you know, like maybe you do do some yoga or that you take some deep breaths at times, you know, and also you can learn what triggers some of your anxiety with that, you know, because sometimes it's people that give you anxiety, right? You know, sometimes you want to talk and sometimes you don't. And it's learning how to answer those questions, you know, because people mean well, but when they're asking you all these types of questions, sometimes you're just like, I don't know. I don't know what my life's gonna look like right now. Because you're learning. And what I've learned through all of this is that it's okay, and then I realize it's normal to feel lost and empty after your loved one who you took care of for so long has passed. And I I think that we need to be able to give ourselves permission to grieve and to find yourself again because you're finding this new person that's never existed before without your loved one. And there is no time limit on this, even though society does try to tell us there's a time limit, there isn't. And we have to figure it out for ourselves. And it's a hard road. It it's not an easy thing to figure out what do we do now when for so long our lives revive our lives revolved around that person and taking care of them. Unless somebody was a caregiver, they don't understand how much of yourself you give to the other person. I mean, I obviously it's your choice and that's what you want to do, but it is a lot, you know, especially as they get worse and worse in their illness. And you do grieve while you're while your person is in that illness. And taking care of yourself does become a second, a second thought, even though it shouldn't. But it's hard. It's it's very hard to do all of it, and now they're gone, and that life that you had is gone, and then you grieve for what your life was like with the person before they got sick, and all of it together is just very difficult, and so we have to give ourselves some grace, we have to give ourselves time to figure out what we want to do because it is empty. We do feel lost, that they're gone, and that hole is hard to fill, and it'll never quite be filled because that person's gone and they were unique to you with it. And I do think that, like I said, I think society wants us to move on, and it's hard, and then you get angry because you're like, wait, I'm not ready. So today I like I said, I wanted to talk about who are you when you don't have that person to take care of? And that's a really big question. I I don't know that you can answer you can answer something like that right away. And I think that, you know, as I said, people mean well, but they want us to get back to normal. Well, our normal's gone. And so trying to figure out what that new normal is takes a long time, and you have to give yourself permission to say, it's okay, I'm still trying to figure this all out, but you have to take care of yourself, and I think that's really hard for a person who was a caregiver because I think that's our nature to take care of everyone else and not think about ourselves. And it's a hard road to learn how to take care of yourself, and even in those little, little minutes, you know, eating a well-balanced meal that might feel like work because sometimes I do feel like that. I feel like, oh, that's too much work to make a you know, a full meal, but I know it's important. Maybe you find, maybe you can, maybe you end up channeling your caregiving into volunteering. Maybe that's what brings you some self-care and you feel brings you some joy. And all you can do is your best to try to figure it out. And on some days, maybe playing the game is what works for you. And other days, maybe it's taking a nap. Maybe another day it is going for a workout, or maybe it's, you know, talking to somebody, or maybe it's watching, you know, the silliest sitcom. You know, I find myself watching some old sitcoms, like Friends brings me comfort. The Big Bang Theory brings me comfort, even though I could probably recite the lines, but I find comfort in it because I know that I've watched it and it's always the same. You know, and and maybe you'll find something like that that makes you feel good. Or it's the same songs over and over again that make you feel good. And it's gonna change, you know, from the very beginning, right when you lose your person to the very end, you know, years down the road, it's gonna be something different. But you have to give yourself permission to figure out who you are without your your loved one who you cared for for so long, and that's okay. And and I I think we're always trying to rush, rush, rush. But like I said, what's important is that we try to give ourselves some care, give ourselves the care that we gave to our loved one, which is hard for a caregiver. We don't like to admit that, but it really is when when it comes down to it. So I hope, I hope that this episode brought you some comfort. And please reach out to me on my podcast page, or you can email me. I'll give you my email. It's L-I-S-M-A-R-93 at yahoo.com. If there are any topics you'd like me to cover or anything that you found comforting, or you know, if you want me to talk more about caregiving, more about grief, more about dementia, or all of the above for it. I hope, like I said, it brings you some comfort and that you know that you're not alone on your journey, whether you're just starting this dementia journey, you're just starting your grief journey, or you're in the middle of caregiving, I hope it brings you some comfort. So I hope you enjoyed your your cup of tea, your coffee, or like I said, if you had a really bad day and your glass of wine, and please join me next time on Patty's Place.