Navigating Grief Throughout Caregiving: Six Essential Tips / Alzheimer's and Other Dementias

This is the Whole Care Network. Music Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Have you noticed that grief doesn't wait until your loved one is gone? It's with us our entire caregiving journey. Sometimes it's like a wave that knocks us down. In this episode, we're talking about what it means to move through grief along your caregiving journey and we're sharing six tips. Welcome. We're Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Nancy, as caregivers, we know grief is something we're going to feel after our loved one passes away. However, we may not realize that there are many places along our journey where we're actually grieving. We're from the moment of the diagnosis through each individual change, through the anticipation of what's going to come, and then as we let go of what used to be. That's really tough. Today, we're going to talk about how to recognize grief, how to give yourself grace, lots of grace during grief, and how to not get stuck in grief. So we're going to start with tip one. And tip one is to recognize that grief comes in many forms. Yeah. And actually, when we're talking about that, one of the things that we're doing, the grief section of what we're talking about today is actually, if you're following along with us with the Navigating Dementia Caregiving Roadmap we created, this is a part of step 20. And caregiving grief is a collection of losses that are happening over time. We call this drip grief. Sometimes they happen so gradually, we don't even realize them at first. And then sometimes we may feel like we just got punched in the gut. For example, the first time we recognize our loved one doesn't remember their phone number. They don't know their address. They can't remember their birthday. Or we're watching them struggle to brush their teeth or get dressed in the morning. Then there's a time when you can no longer have a meaningful conversation with them. Then there's the time when they don't remember who you are. That's got to be one of the hardest ones. That is a hard one. And we're trying to help you think through what that really feels like. Those punches in the gut, they make you sad. They make you anxious. That's grief. That's drip grief. And today we want you to recognize that. You know, losses come in other forms too. You may have a change in your relationship. You'll go from being the child or the spouse to feeling like you're the parent. That's tough. That feels wrong and bad. You'll start to potentially lose your own independence. And that's grieving the life you used to have. You may feel like you're the parent. You may find yourself with drawing from activities or from your friends. While we don't want that to happen. It's a sign of grief. Pay attention. And then you will likely grieve the dreams, particularly if it's your spouse that has to mention the dreams of the life you expected to have and the life you've left behind. Yeah. And these feelings are valid. I mean, they're absolutely real responses to real life. Real responses to real losses. And it's completely normal to grieve the person they used to be while they're still alive. Grieving during caregiving is as real as grieving after death. Right. And that's really something we want to raise awareness to today. You know, so I remember when my, I realized, and I can still see it standing in my kitchen. And I realized that my husband didn't know our phone number. We had the same phone number for 25 years. And when I realized he didn't know our phone number, I, you know, probed a little further and I realized he didn't know our address. He doesn't know his ATM code. He doesn't know his birthday or how old he is. And it all seemed to happen at once. But every time I'd realized something else he didn't know, it felt like a ton of bricks had hit me. And I didn't know how to process that or how to recognize it or put my finger on what it was. But I've come to learn it's drip grief. That's what's happening along the way. I was grieving his loss of independence and what that meant to both of us. And once we recognize that this grief is going to come in many forms and it's going to come throughout our journey, it's helpful for us to have a foundation so we can learn how to help navigate these feelings when they come. And also, and we're saying this multiple times throughout this episode, give ourselves a lot of grace as we're going through this. And so that's tip two. That's what we're going to talk about in tip two, which is, give yourself grace and honor your grief. Now, what does give yourself grace mean? That means don't judge yourself when you're sad about something that's happening. And drip grief happens throughout your caregiving journey. And these little things are going to make you sad. And when they do, don't think, I should be handling this better. Give yourself grace. It's okay to not have it together all the time. And if I'm saying that, then you know it's important because I really struggle with that. But it's okay not to have all the answers and not to have it all together all the time. Instead, honor your grief. I think that really makes me sad. But you know what? That's okay. Well, then honoring it is what helps us move forward. So we don't want to push it down. We don't want to say, well, we shouldn't feel this way. We don't want to ignore it. The only way that we can possibly understand it and deal with it and move forward is if we actually honor it and especially when we start feeling overwhelmed. So practice saying things to yourself like this. It's okay not to be okay. It's okay not to be okay. Or I'm allowed to feel frustrated because this situation is genuinely difficult. You'll have a lot of those. It's okay. Give yourself grace. Don't judge yourself. Help us all around me. I don't have to know all the answers and I don't have to do everything myself. This one is huge, huge. And it's so hard for us to do. For some of us, I mean, it's just that we really have to acknowledge that one. It's really, really hard. And we sure do. You know, take the time to allow yourself these emotions and take time for yourself. Yes. If you have to go sit down somewhere to accept your grief and honor your grief, do that time for yourself is not selfish. It's really what you need to do to be your best for yourself and for your loved one. Just recognizing that we're feeling grief can be a powerful release for us. Even when we're trying to practice grace with ourselves, there's another barrier that can often get in our way and that's judgment. And it's judging how we or others are grieving. And that leads us to tip three. Don't judge our grief, ours or anyone else's. Each of us moves through grief in our own way and each experience we have is going to be different. And so if we catch ourselves saying things like, well, gee, other people seem stronger than me or everyone else seems to be coping better than I am. Or, here's a good one. I'll get my air quotes out. I should be able to do this and do it on my own. Our grief is ours. You don't have to defend it and don't judge it. Allow it to be what it's meant to be. Right. Later we're going to talk about how to not get stuck in it. Yeah. But in the meantime, honor it, accept it and don't judge it. Because needing help doesn't mean you're a failure. It just means it's time to reach out for help. And I think what we're talking about here, grief is not a problem to solve. It's not. And that's really what we're saying. It's not a problem to solve. It's something to honor and to figure out how to move through. And when we're not judging ourselves or judging others, it's very empowering for us because it allows us to feel what's real. Instead of judging, here's the air quotes again, what's supposed to be. Right. That's really tough. You do have your preconceived notions of what grief should look like. And if yours isn't going quite like that, it's tempting to judge yourself. Let's just don't do that. Let's go to tip four because tip four is about accepting, it's really expanding on this, accepting that grief is an emotion that we're meant to have. It serves a purpose. It absolutely does. Yeah. And that makes a big difference. If you can just, instead of thinking grief is a bad thing and I need to get over it, if you think of it, it's an emotion that humans have. It serves a purpose. It helps us feel. Yes. It helps us learn. It helps us get to the point where we're leaning in and moving through it. We'll come out the other side really more whole than we were when we started. Right. We can just pull ourselves and pull everything back together that way. It's not something that needs to be fixed. It's something that needs to be honored. And if you give yourself permission to grieve, then that's the best thing you can do to find your way through it. So here's some different ideas, things that work for people to help them work through their grief. Some people journaling or writing down what they're thinking or just journaling and writing about what's happening is a great way to. Honor their grief and help them move through it. For me, it's really getting out for a walk or exercising. I find I get in my own head and I really have the endorphins and it helps me relax and find a way to think things through. For some people, prayer and meditation is a good way to honor their grief and to really move through it. We even find going to therapy or counseling is a great way to get your grief out and to talk it through. And if you don't feel comfortable going through a therapist or a counselor, find a good friend who will listen to you and talk things through with them. Right. The key here is to give yourself time. Don't rush through the process. There's no magic here. No. Just give yourself the time and the space to work through your grief. Accepting grief is one of the most important emotions in our lives. Interesting. Gives us permission to process in a way that's healthy for us. Yes. And that leads us to tip five, which is recognizing grief and not getting stuck in it. That is a key. That's a key. And we brought this up several times. It's really, really important. Grief impacts us emotionally and physically and psychologically. And here are some of the symptoms to look out for because it really does impact different people differently, which is one of the reasons why we say we want to make sure we're processing our own grief instead of trying to look at what somebody else is doing and try to fit our grief into there. No, it's ours. For example, you might be when you're grieving, you might be having trouble remembering things. You might get, you have trouble concentrating or making decisions trying to figure out what to do. Your sleep can be disrupted. You're either sleeping a lot or you can't get to sleep and you feel worn down or tired all the time. Emotionally, another way to recognize your grief. Are you angry at and do you overblow things? Your anger is not appropriate for the situation. You may not be shocked yourself. I mean, I know I don't get upset. I'm just not a person who ever gets upset, hardly ever. And I remember that I just, something happened and it was so insignificant and I just blew it way out of proportion. And while it was going on, I was like, who is this person? Right. That's important. I was grieving. You just think what's happening to me, but it's to rip grief. It's that little bit of grief. You're grieving the situation as much as you think. All along the way. So watch yourself because we just want you to be able to recognize it as grief when it comes to you. Do you have more anxiety and worry than you typically have? Are you detached from other people? Do you find yourself kind of stuck in this level of sadness and despair you can't get out of? Can't get out of it. That could easily just be grief. Yeah. So here's some behavioral things that we can be watching for as well. And I recognized some of these in myself is that, you know, we lose interest in the activities that used to really bring us a lot of joy. We just find ourselves withdrawing socially and we start to isolate. We just can't figure out how to get back and get engaged. And I've talked to people who've lost their appetite and people who've just can't seem to get enough to eat. So it can disrupt what how you feel about food and eating. And the thing I've learned in my life and I've done a lot of studying about this because when I started recognizing drip grief, I wanted to really understand the grieving process. And one of the things that I learned is we're not meant to stay in any emotion and grief is an emotion. So we're meant to have it or like you had said before, if we weren't meant to experience grief, we wouldn't have it. But we're not meant to say we're not meant to stay happy all the time. We're not meant to stay sad all the time. We're meant to be in that emotion, learn the lessons from it and move on. And you're going to gradually find yourself moving back to living, not because you're forgetting your loved one, but because you're remembering yourself. You know, something I want to mention that I've last year, my father died in January. My father in law died in October and my husband died in December, all in the same year. And so I had a lot of experience with my own grief, but also my mother's grief and my mother-in-law's grief. I've told a lot of people this story when I was caring for my husband. I really worked hard to feel good that I was giving him the best care I possibly could and told myself, you know, I am working so hard at this to make sure I feel good about his care. I am not going to be one of those people that after he passes away thinks, wow, I wish I'd done a better job. Well, let me tell you this. It wasn't two or three weeks after he passed away where I was, that's all I could think about. What if I'd done this instead? How much better of a job I could have done? And then I was listening to my mother say the same thing about my father and my mother-in-law say the same thing about her husband. And I realized this is just a natural part of the grieving process. So I just want to raise that to everyone's awareness so that they get a chance. If you love one does pass away and you find yourself doing that, just realize this is natural, particularly in dementia caregiving where it goes on for such a long time and it is very difficult. Just know it's really natural to second guess how you care gave and, you know, let yourself honor your grief, let yourself go through that and don't judge yourself. And what's really important with that, Nancy, is it's so easy when you get to that emotion that's not supporting you. You're actually when you're judging yourself, a lot of people say they feel guilty. Yes. They should have done more or they're second guessing themselves and they're putting themselves down. Well, you're not really feeling guilt or you're not feeling these other things. What you're really feeling is sad. And if you don't use the right emotion, you can't process it and get through it. So when we start to hear ourselves using emotions that don't support us, stop and take a step back and say, you know, what am I really feeling? Is it sadness? And when we understand this, when we really kind of figure out that that we're really grieving, we're sad and we didn't the best that we could. The best we could. That's all you can ask for. When we recognize that it also helps us be more compassionate with ourselves instead of judging ourselves. Right. So we're back to giving ourselves grace, right? Lots of grace. Yeah. Give yourself a break. I do think there is a time sometimes where grief really becomes your home and you get people to think, you get people do get stuck in grief. Yep. I can remember my mother when her mother died, my grandmother. It was six months later and I was talking to her on the phone about something and she started crying. And I noticed she had been crying a lot. And so finally I said, Mom, how often do you cry? And she was never a big crier. And she said, Well, I cry every day. And I'm like, Mom. And so I guess my point is she wasn't crying about her mother. It's six months later. She was crying about something completely different, but she cried about something every day. And I said, Mom, this is not right. I think you're stuck in grief and we need to get some help. So don't think it's that you're stuck in grief means you're stuck crying about your loved one every day. It could easily be that you're stuck in grief and you need to recognize it because it may not show itself because you're thinking about that person all the time. It could show itself in lots of other ways. Irritability we talked about and jumping on things and showing the wrong emotion. So just beware. Sometimes you're stuck in grief like my mother was for six months, right? Sometimes you're just stuck in grief today. You can't get out. You're wallowing in your grief. You're thinking about your loved one and you're sad and you can't stop grieving. And I want you to think about a way that you can just change your environment. So try going on a walk, going to the grocery store, calling a friend and going to coffee or lunch. But when you're just can't even get through the day because you're stuck in it for today, try to change your environment. That's a way to keep you from just continuing to wallow in that grief. Yeah, and that was one of the things that was such a valuable lesson for me in learning about processing grief is that when I started feeling like I was losing myself, I did something. I either called somebody in my support group. I reached out to a friend. I did something that brought me joy. I did something. So here's another thing that's really, really important is that we don't have to be in a crisis to ask for support. When we start to feel it, I mean, it was so helpful for me is that the minute and we kind of, when we, when we sense something's not the right, right way. So reaching out really helped me stay more grounded. It kept me from going way down the path and not being able to get out in it. It helped me explore different ways. And so this is where the emotion kinds of supports us. It taught me ways about myself that I could get out of grief, that I could do things that changed my environment and it was a healthy way of doing it. Well, you know what? That leads us to tip six, which is let grief teach you. So it doesn't, it has some wisdom to offer if you, if you'll listen. It does. And this might shift the way we think about grief. Brief. It's painful and it's difficult. However, it also carries wisdom and it carries lessons. Grief is an emotion. As you said before, it's meant for us. It's meant to teach us things if we're willing to listen. And so for example, when we talk about every emotion has a purpose in our lives, one of the things that taught me is I learned the more deeply I grieve, the more deeply I love. And it helped me understand how deeply I do love. I learned. I was strong and I was resilient in ways that had never occurred to me that I had no effort. So it's taught me to pause to kind of kind of take a look. And one of the things that also taught me is it taught me to find beauty and even the tiniest little moments and just celebrate those. It didn't have to be a big thing, but it could bring me joy and I could feel that without holding back. You know, you do find as you're moving through grief, you do find that it transitions from being grief about the dementia and the unfairness of what your loved one went through to second guessing everything that you did. There is a point where it transitions and you start to think about your loved one before they ever had dementia and you find the joy in the moments. And it does the person they were for those last few years does sort of fade and you start to remember the person that they were before and honor that person. And it is a, when you move through it, it does kind of come back to joy in the end. It does. And one of the things I learned and I share with so many people is when we have a loved one who has a neurocognitive diagnosis, their heads may not remember us. Their hearts still do. Yes, of course. So we talked about grief today. We talked about how to recognize grief, how to give yourself grace and honor the grief that you're in and how to help yourself move through grief. So let's summarize. Okay. We shared six tips in this episode. Yes, we did. Number one was recognize grief isn't one thing. It's many things in caregiving, particularly long-term caregiving like dementia caregiving. You have drip grief along the way. You have anticipatory grief as you get towards the end and then you have the grief after your left one passes. Absolutely. All of that grief needs to be honored. And tip two was give yourself lots of grace as you honor that grief. Absolutely. And tip three, don't judge your grief. That's a tough one. Compare it to anybody else's and don't judge how other people are grieving as well. And tip four, accept that grief is an emotion we are meant to have. It serves a purpose in our lives. Tip five, recognize grief and don't get stuck. Oh, and tip six, grief has lessons for us and it has wisdom to offer us. Yes, it does. If you have tips about how to move through grief, recognize grief, honor and give yourself grace, please put those on our Facebook page or our Instagram page. The links are in the show notes. If you like this podcast, please subscribe to it or follow it. Rate it. We really, really appreciate it. Now, every podcast has a matching blog. So whatever number this podcast is, there'll be a blog with the exact same number. We've effectively taken the notes for you. And if you're following along with our 20 step navigating dementia caregiving guide, you can download that at the caregivers journey dot org website under the guides page. It's the first guide that's out there. But guess what? The links will also be in the show notes. There you go. And just like everything else we offer, it's complimentary. Of course. So grief is with you throughout your dementia caregiving journey, but we want you to know we're all on this journey together.