Caregiving Isn’t Meant to be Lonely: How Denise Brown Builds Community through Support and Resilience | EP014

Hello and welcome to the sharegiving secret. This week, I am so proud and honored and happy to have as my guest, Denise M Brown. Denise is someone I turned to during my caregiving years, and she's helped me through an awful lot, and I've been able to learn from her. Thanks to Denise, I've become a certified listening artist, and I'm very proud of that credential, because listening means a lot when you're talking about caregiving. So let me introduce Denise to you. She supports individuals who are managing difficult life experiences with coaching, planning and training through her work, Denise helps clients find hope, possibilities and a path forward. I can also tell you that Denise began helping people who care for a family member in 1990 and she launched a business to help them. In 1995 she created one of the first online caregiving communities in 1996 which she managed until its sale in 2020 so I came in on the late end of things, but I'm very glad that I did. Denise now develops and delivers training programs for the workplace and for individuals who want to coach family caregivers. More than 400 individuals from eight different countries have enrolled in her training programs through the carriers academy.com and you can connect with Denise through caring our way at HTTPS. Colon backslash, backslash, join dot caring our way.com and all of this information is going to be in the show notes. I also want you to know that Denise is the author of several books that provide insights, comfort and hope to those who care, including the five book series called Take comfort the caregiving years. Your Guide to navigating the six caregiving stages and after caregiving ends, a guide to beginning again. So welcome Denise. It's great to see you this afternoon.

Yeah, thanks so much for having me. I'm excited about our conversation.

Me too. I'm looking forward to it, so let's get right to it. I have a question about the kinds of challenges that people face in finding and receiving help?

Oh, boy. You know, I think I get this question actually a lot, and I just got this question when I was doing a workshop for professionals, nurses and social workers who might work with family caregivers, and oftentimes their perspective is that family caregivers don't ask for and don't receive help, and I want to let you know that that's only a part of the story. It can be really difficult to figure out what help you need, and then we're trying to add in help to our fragile House of Cards. So even if adding in help is going to help us. We have to figure out how to put it into our house of cards, how to talk about it with our Carrie and other family members. And then we have to figure out, Oh, we're going to continue to take care of that help. We also might think, well, what's the help I need? And it could be that we decide I'm going to call and find out about help in my community, and it might feel like you have to jump through a lot of hoops. Once you connect with an organization, they might have requirements that you complete a really long, difficult assessment process, and you think I can't do that. So that help is not going to be right for me. It's not just as simple as saying to someone Okay, who wants to help me, and then picking from the enormous army of volunteers who have raised their hands. I think it really is about experimenting to figure out what could work, and it's also about remembering that help is for our carry and help is for ourselves. So as we're thinking through what's the help, and we're talking to our carry and our carry is uncooperative or resistant to it, we can think, okay, then what's going to help me right now,

those are such great metaphors, the idea of a house of cards which is so vulnerable to this lightest movement or tremor in the system, and the idea that there is sometimes so much help that is overwhelming. I think we often, sometimes we focus on the fact that nobody's helping a person, but actually, sometimes there's too much help coming in, and it's difficult to decide what to do first, as you said, and and who is going to be the best person right now, or what do I even need? Because the one person I know who gets lost in that caregiving is often the caregiver. So I think it's

kind of interesting, because sometimes it's too much, and then other times it's too little. And. And always can feel like we're trying to balance it, and we don't know what the day will bring, which means we can't know what balance we need on each day. It is an art form and a science to figure out the help part. I also want to mention that sometimes we get help through a program, and it could be, for instance, through Medicare, and it could be home health after our carries hospitalization. And we think this is fabulous. You know what? That ends, that's only short term. And sometimes we get tired of things ending and starting over again. I have a client who is in that position. She says, I loved the help I got through hospice, but hospice benefits ended because they didn't see my husband. You know? I mean, this sounds like such a terrible way to say it, but he wasn't getting worse enough, and so the help stopped. And she said, I just can't take it anymore. So for instance, if she could use a home health benefit through Medicare or her husband, she says, You know what? I just don't think I want to do that anymore, because it always ends. There's people that come in and then there's people who just disappear again. I think it all depends on what is our bandwidth in terms of mentally, physically, spiritually, emotionally, can we manage right now? That's the other part about balancing help we get weary. Sometimes it feels like there's a revolving door. If we're using, for instance, home health aids through a home care agency. It can feel like we're always training, we're always managing, and then they are not coming back. There's someone new. It's hard. It's just hard.

I love what you said about it being an experiment. Sometimes I think trial and error, mostly at her on my part, when I was doing it, but, but it is an experiment, and it can be creative. And then, of course, there are those dips where I just don't want to keep running the same program anymore in my life, so I'm not going to even use that help anymore. But it is a personal thing, an individual thing, more than it is a system that everyone can apply equally in all situations. So it sounds like you have some experience with the other side of this too. What help and support did you develop and receive when you were a caregiver? Yeah,

I cared for my parents. I cared for my dad for just about 20 years. I cared for my mom for seven so as I was caring for my mom, I was always also helping my dad. So we used home health all the time, and I was okay with the ending, because I knew I thought of it as a pause. So for instance, my dad was always struggling with skin tears that were very deep. He would think about falling and he'd get a skin tear. So you can imagine what it would look like when he did have a fall. We did wound care for my dad for years, I guess I should say I did wound care for years for my dad. And I always knew that home health was temporary, but I always took it. It was okay for me to think of it as a pause. It was hard on my dad, though, to think about it ending. So we worked through, how do we manage his sadness about these people, these his care team, who would come in, who he developed this really nice relationship with. What? What does it look like for it to end for him? We also had other siblings help out, and plus, my parents did hire a niece, a nephew and my sister to help them out. I had talked to them about hiring through home care agencies in our community, and they were very resistant about that. So instead, we just hired family members, and we hired them when they were in transition. My niece was in transition, so she helped them for nine months, and then we moved to my nephew, who was in transition, and he helped for three months. And then I actually had a brother who died, and after he's his death, my sister didn't want to go back to her job, so she worked for my parents until their death, and then I was always the one that was organizing, managing, I would make things happen, and then I used my siblings in different ways to help me.

That's great to have a team on your side. Do you have any advice for people who are doing the solo act, which neither of us would recommend? I think,

yeah, it's hard to do this alone. And I think you can sometimes feel like it is just you. We might have people that come in and out and help a little bit, but it's you, and that pressure is really intense. And I think if you feel like or you are doing it alone. Own it's important to think about what's the support that's right for you? And you'll know what the right support is, because when you receive it, you'll feel relief and respite. And I think about relief from the emotions that take a toll, and respite from that physical demand of caregiving, that's what you're looking for. When you think about what's the right support for me, this feeling of relief, even if it's just for five minutes, and this feeling of respite, even if it's just five minutes. We have planning sessions that are available for free every month, and one of them is a respite in place plan. The idea is sometimes you can't get out of the house, you can't and it's creating a space within your house or your yard or your community that gives you that feeling of relief and respite. We also help with family emergency planning. We do a monthly free planning session. This is really helpful when you are doing it alone, to feel like, okay, I have to figure this out, because there are times when something might happen to me that disrupts the caregiving responsibilities. So we can help you think through. What are the other options? How could you use technology? What are some programs that maybe don't feel right right now, but you want to be aware of them in case you need them. It's important to know that there are ways that you can connect to resources, and we want to be able to help you. We really don't want you to feel like you're alone. So our community is what we want for you to actually connect with, so that you feel like you are in the good company of others who get it.

That's great. The the relief for that feeling of isolation that so often comes up because you're 24 hours preoccupied with one person, you might not think to call your county agency to find out, do they have medical rides, or do they provide any other services for caregivers? And I come up against that so often when I talk with people about how they're feeling. And I want to dig a little bit deeper on the feeling question there. I think you've mentioned before that among the top worries would be these three, your worries about anything from yourself to your person or to the medical community, your loneliness and your stress. And I know we're coming up on the holidays. So are there some tips you might be able to give? Maybe you could use them all year long, but particularly at those times when people are busy with other things and maybe can't provide the help that they usually do.

I think every worry needs a plan. If I'm worrying about something, it means I can think through a plan which puts me into action. I always felt at my worst when I was stuck in a worry. If I thought through, what could I do about this worry? Then I felt better. If there's a worry around the holidays, we can think through, what could help me get through this? So for instance, I'm thinking about my own holidays, and I'll be honest, I'm not really looking forward to them. So I started thinking about, Okay, what am I dreading? Honestly, that was the question. And you could replace dread with worry. And I thought, well, what could I put in place to help me? So I started thinking about strategies I can use during the family get together that will make it easier on me I don't have to endure. Sometimes during our caregiving experience, we just get used to enduring, and I don't think that's a coping strategy. Rather than enduring, let's figure out what could help this feel manageable, better, even just a little bit better. If you are thinking that there's something about the holidays you endure. Think about what could make it better. So for instance, if this is not the holiday for you to host, think through, what could it look like for someone else to host? And if people say, Oh, but you always do. You can always say, just for this year, I'd love for someone else to host. I've got a little too much on my plate. I am feeling battered down. I am worried that I won't be able to manage even with your good help, it's always helpful to kind of position it in a way that you might think I don't really help. But you know what? Just say, even if I have your good help, it would mean so much to be this year for someone else to host. You can also think, you know what, if no one steps up and hosts, you could off. You could think, okay, then what's my alternative plan? And it's just, I'm not hosting. If someone else can host, great, and if no one else will host, think about what is. Right for you, one of the things that we do on caring our way.com is a 36 hour Christmas chat. We do it annually, and we start at noon, Eastern Time on Christmas Eve, and then we keep our chat room open for 36 hours, knowing that you might be with family, but that might not feel like where you want to be. And you can step into our chat room, you can scream. You can just release it. You can receive our support, and then you can get back to wherever you are in the holiday that's a strategy that you can keep in mind. So thinking through, what do I dread, what do I endure? And then deciding that there's a better way, and then thinking through what that could be, communicating it set a boundary, and then consider what works for you, and then create that plan to make it happen.

I think those are great ideas based on wonderful premises that you need to endure. What can you endure? And you need to make a plan I have. I was thinking of something one time. I remember I was expected to do all of the above, and I thought about when a neighbor of my parents had accepted a dinner invitation somewhere else. On the evening they had invited 30 people to their house for dinner. So the neighbor was pretty creative, and what they did was to set up stations around the kitchen where different items could be cooked. And when the guests came, they were each handed a recipe that they had to prepare so that they could fix the dinner. And I thought, what an interesting possibility it might you know, your kitchen might look a mess afterwards, but just to worry about getting the ingredients together might be enough and let other people do the cooking, and probably they would have a good time just chatting with each other and reliving experiences you have to know your family, I guess, before you try something like that. But the idea of planning it and not necessarily having to execute all of it yourself, I think is a great strategy to have in mind. So let them make the dinner party, but don't tell them ahead of time something like that. Now, I was in your chat room last year across the Christmas holiday, and I think you and I had a very good chat because, fortunately or because people didn't know enough about it. We didn't have too many guests that night, but we're all hoping that everyone will sleep well this year and be relaxed and even come say hello to you, whether they are suffering some, some sort of of accumulation of worries and so on or not. So we dealt nicely, I think, with worries there. How about loneliness. How does a caregiver cope with loneliness?

I think it's important to know that the definition of loneliness isn't about not having people in your life. The definition of loneliness is not having the kind of connections you want in your life and in a caregiving experience, we might feel disconnected because others can't sit with us and hear about our day because others don't get it, and so don't hear about our day in a way that's helpful. It's one of the reasons that I started the caregiving listener project that happens twice a year. The next one is February 22 it's this idea that we connect a family caregiver with a trained listener so they can release something, a story that they haven't told anyone else, that they kind of think I'm not going to tell anyone else because they're never going to get it. We want you to tell us. We don't want you to carry it any longer. And that's loneliness. When you are carrying a story or stories about what your life is like, and you don't have a place to share those stories, you don't have someone who can hear those stories. That's why we're lonely, and in our family system, we also might have family members who can't hear our stories. Gosh, my younger sister, she was the the sister that my parents had hired. She could not hear anything related to what I was experiencing, because I was the one that was right there. When there was an emergency. I managed it. When there was a change, I managed it. I got my parents places. I made it possible. I really looked to what brings quality of life for them, myster, my sister, showed up and then left, and for her to do anything more than that was impossible, and I understood that she just couldn't cope. And I will tell you it just made it a lonely relationship. For me, the loneliness is ever present, and I think it is heightened during the holidays, because we also see people just going about their holidays and celebrating and having fun. And for us, that's different during a caregiving experience. That's why a community of support is important. But some a community that gets it where you can share exactly what's happening, and then someone doesn't say you know what you should do, or just dismisses and minimizes your normal response to a very difficult experience.

Yeah, that feeling of disconnectedness is is so important to understand it's it's not that you're without people, but any of us who've cared about someone or for someone during a holiday season when the person wasn't able to be responsive or to share the stories that one likes to share on the holidays, it's a pretty bleak moment. So finding a place to tell your stories, whether you're caring for someone or not. I think loneliness is kind of an epic problem in our world. These days, people do feel disconnected. So it applies more generally than to simply caregivers, but that's a really important one, to stay with it until you find a way to connect with others, and there are lots of opportunities out there now, and certainly that listening project is is one of them.

How about stress?

I'm not stressed. That's what I used to say when I was a caregiver. I'm not stressed. My carrozilla would come out. So what is your suggestion for for avoiding or managing down and avoiding the burnout that comes with it.

Yeah, there's so much pressure during the holiday season, and I think we feel like I've just got to power through this. I've just got to make it through and we often put pressure on ourselves to dismiss our own emotional responses, because we think I'm not sick. I look at my carry and I think, oh my gosh, he or she is the one that is struggling because of this illness. I'm not sick. I should be grateful that I can do these things. I should I should be happy that I can do these things. And this forced emotion on ourselves adds to the stress. In truth you are feeling the impact of this caregiving experience. You are living a different life because of this caregiving experience, and it's okay to feel that way. It's okay to feel that sadness and grief. I think if we try to push it back in, it just becomes the weight that's too much to carry. We have to think through how can I let it out? We have a couple different plans around stress. One is the daily recovery plan, and one is the daily healing plan. And I think of the recovery plan for our body. I know during caregiving, it would settle the stress would settle on my lower back, and I would think, I cannot walk. So when I started to feel that, I would start using this particular cream that I found that would just feel so good. So my daily recovery plan was to actually have this cream always on hand, like I always had it in my cabinet, and then before I went to bed, I would make sure I would just rub it into my lower back when we think about something like a daily recovery plan or a daily healing plan, we're really using a three step process, naming what hurts, naming a strategy that can help us feel better, and they then naming an emotion or a place we want to go to that feels better. So for instance, going back to my back pain. My pain is my back pain. My strategy is to use this cream because I want to feel more relaxed when we think about the daily healing plan that's about healing our heartache. And during the holidays, we have heartache. Our holidays are different. Someone in the family is declining, disappearing in front of us. Our family might feel fractured because we can't get on the same page around caregiving, choices and decisions, and so for that, we can think through what hurts, and I could say it hurts that my family is fractured. And then I could think through what's the strategy that helps me? Now, this may seem like an unhealthy strategy, but I could think, well, in our better days, we all enjoyed my mom's chocolate chip cookies. I'm going to make chocolate chip cookies, and then here's where it could feel healthier. I'm going to make chocolate chip cookies as gifts to my neighbors. What I just keep to myself, and then what I want to do is feel better being connected to a community. So if. Family system is like a community. If our family system feels fractured, what I can look to is thinking about, well, my neighbors feel like a community. I want to take care of them. I feel I feel good making my mom's chocolate chip cookies because they bring back good memories, and then I can package them and deliver them to the neighbors, and that's what helps me heal my heartache. That's

great. I think the the idea of the caregiver caring for others in order to heal herself, is is a paradigm we often turn to that I can take care of my neighbors and that will make me feel better. And I want to point out one other thing that you did there. You mentioned a couple of senses when you were talking about, what do I need, what hurts and what do I need? One was touch when you talked about massaging the cream into your skin, and the other was the chocolate chip cookies, which cover a couple of senses for me, taste and touch and touch, also, yes, and seeing and inhaling that beautiful aroma, and that's often a good way to approach stress. What's being deprived here? What don't I have? And how could i What are simple ways I could put that back in my life right now, so I could take a deep breath and really enjoy it, instead of thinking about all the hospital smells that I also have to cope with at the same time, when I'm doing hospital at home. So I love that those ideas that you gave us, and that's so important, take a minute. What do I need? Where does it hurt? What do I have to repair? So I love these ideas that you've given us for handling worry and loneliness and stress, and we're pretty close to the end of our time of recording. Now I can't believe how fast it went for me, and I would like to ask you to remind us of the best way to get in touch with you so our listeners can connect when they need to. This

was great. Deborah, thank you so much for having me, and I'd love to connect with your listeners and viewers so you can go to our community, which is caring our way.com. You can join our events, our special initiatives, and really connect to our support. We'd love to have you join us.

Thanks so much for being my guest today, Denise, and always, for all of your good counsel, which I truly depend on, whether I'm a caregiver or not these days, and I want to wish you a happy holiday season, and also to all of our listeners and viewers out there, so everyone, take good care of yourself. Put your own mask on first and try some share giving. Who can you help today? Thank you.