Nobody Prepares You for This

When a loved one has a serious illness like cancer or dementia, or they have age-related decline, it can seem like your life has turned upside-down. Nobody prepares you for this.

Sometimes the skills that are helpful in regular life actually make caregiving harder. But you can repurpose those skills to make caregiving easier.

This episode of The Integrative Palliative Podcast will show you why hyper-competent people can struggle when a loved one is ill - and what to do about it.

- Doctor Delia

www.DoctorDelia.com

Free Guide: Nobody Prepares You for This

https://trainings.integrativepalliative.com/pl/2148761984 

Coping Courageously: A Heart-Centered Guide for Navigating a Loved One’s Illness Without Losing Yourself is available here: www.copingcourageously.com 

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Transcript

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Welcome to the Integrative Palliative Podcast, where we bear witness to both the tough stuff and the blessings that come with caring for people who are aging or ill. Their well-being matters, but yours matters too. I'm your host, Dr. Delia Chiramonti. Welcome friends, this is Dr. Delia, and the title of today's episode is Nobody Prepares You for This. Because that is what I've heard so many times from caregivers that I work with one-on-one. Nobody prepares you for this. And it's not exactly in the way you think. It's true, on the one hand, nobody prepares you for this. We don't know how to care for a seriously ill-loved one until we've done it. And even if you do it for one person, the next person may have a different situation and the issues may be different. So even if you've done it before, you're still not prepared for the second time. And that brings me to what really kind of struck me as a kernel in this concept, which is that it's not just, oh, if somebody had taught me how to do it, then it would be fine. It's just that there are such deep and existential issues in walking beside someone that you care about through their serious illness, that it's kind of like we can't be prepared for this. So that's what I want to talk about today. But in this conversation, you'll see there really is a lot that you can do. It's just not what we tend to think of like, well, just teach me more or give me more practice and then I'll be great at it. It's different. It's different than you might think. So that's what we're going to talk about. Okay, so what I found in the people that I work with, and I'm assuming it's probably true for you, people who are listening, is that you are generally somebody who knows how to do things, who knows how to figure things out, who gets things done. You're probably the kind of person that people rely on. You're a good problem solver. And almost everybody that I work with one-on-one or in groups is that person. They're used to being competent. They're used to feeling competent. They're used to feeling like, okay, I understand the situation. Maybe I had to up level my skill over here, but now I got it and I can solve this problem. I can figure this out. And then they end up caring for somebody that they care about who has a serious or life-limiting illness. And all of a sudden, all of those skills disappear, or they don't work, or the way that they typically problem solve just doesn't match with the problem that they're now solving. It doesn't match to the situation that they're now in. So yes, nobody prepares you for this, but perhaps not in the way that you're thinking. So people tend to think that caregiving is hard because of all the time pressure, of all the work that has to be done, of the emotions, of the medical issues. And yes, of course, all of that is true. Yes, there are big emotions, and that's hard. There's a ton of just things to do, and it often can seem like it goes on forever. There's medical complexity work to work out. So, yes, those are issues, and that is part of why it's hard. But that's not the central core reason that it's hard. The deepest reason. The deepest reason that caregiving is hard or walking beside someone who is facing a serious illness is hard is that it's just simply a different kind of problem than the regular kind of problems that we deal with in our regular life. So, in most of your life, I'm going to imagine that the more effort you put in, the more results you get. That's generally how things work, right? You work harder at something and then the results turn out better. Or you plan better and then you have more control about the outcome. So if I just learn to plan better, I can have more control about how things go. And of course, that may be true for much of life, but that is totally and unfortunately untrue when you're walking beside somebody who has a serious illness. So more effort in caregiving does not necessarily equal a better outcome or a clearer outcome or the outcome that you want. But because we're so used to this idea that more effort gives better results, we can try and try and try and try and like give everything we have to this situation to try to make a better outcome. But that equation simply doesn't work in caregiving. But it is part of why it feels so depleting, because people think, well, I'll just try harder, I'll just show up more, I'll just spend more hours, I'll just read more things on the internet, I'll just call the doctor five more times, and then it will all be okay. Then it will feel easier, then I'll know what to do. But unfortunately, it just often doesn't work that way. But it does totally deplete you to behave that way. So in caregiving, more effort does not necessarily equal a better outcome. And also, more knowledge does not necessarily equal more certainty or clarity or control. I think I fell into this trap, even with my dad's recent illness and death. So I'm a palliative care doctor, right? I have a lot of knowledge around all of this stuff. And I've counseled a lot of families about how to best make use of this time while their person is ill, how to prepare for the death of someone that they love. I had all this knowledge. And somehow I think I assumed that that was going to make it easier for me, or I was going to be more certain about what to do. And while on the one hand, yes, I did a lot of things that maybe I wouldn't have known to do if I hadn't been in palliative care. We did a great legacy project. We had really important time together at the end with my kids and my dad. So a lot of things went well, but there were some things that didn't go well. And even with all my knowledge, I still couldn't get the certainty and the clarity that I wanted. So there were some things that I regret now looking back, despite all my knowledge, just because this whole concept of walking beside somebody with serious illness is very non-controllable. You don't know what direction necessarily something's going to go. So even the knowledge of a palliative care doctor does not mean that it turns out exactly how you want it to turn out. So basically, part of what makes this so hard is that we try to use the wrong skills to create an outcome in a way that just doesn't work. So we're trying to solve something that can't be solved. And when it, when we get a vibe that it's not being solved, I'm not getting the results I want. I'm not clear about what should happen. I'm not happy with how this is going. We just try to put more effort, more planning, more knowledge into it as though that's the solution. And it still doesn't fix the outcome, but it really depletes us. So this mismatch is part of what is so exhausting. So things that are strengths in your regular life can turn against you when you're helping somebody who has a serious illness. So, for example, overfunctioning. I'm not saying overfunctioning is great at work either because it's exhausting, but this concept of I can take that on, I can do one more thing. In caregiving, if you overfunction, you will become exhausted and probably even resentful. And probably you will ignore your own needs and try to take on all the things, right? We can't manage our loved ones' feelings. We can't make them not be afraid of their illness or afraid to die. We can't make the illness stop progressing. We can't make doctors be different than they are. We can't fix a broken healthcare system. We can't make our siblings behave differently than they have always behaved their entire life. And simply taking everything on yourself and feeling responsible for fixing it all doesn't work, but it will just deplete the heck out of you. This overfunctioning, which may seem productive in work environments and other kind of regular life environments, can really send you down a very difficult hole when you are caregiving. So one question to ask yourself is what am I doing that isn't really mine? What am I taking on that isn't mine? Is it other people's emotions? Is it trying to fix the disease which is not fixable? Is it perseverating about the doctor's personality when there's really nothing that I can do to change that? So what am I carrying in my huge bucket that is not mine? And can I throw it out of my bucket so that what's left in my bucket is just the stuff that is mine to do, mine to worry about, mine to hold. Okay, strength number two that can kind of turn against you when you're walking beside someone who's seriously ill is information chasing. So in regular life, more information generally helps. And we can have this idea of, well, if I just learn enough, I'll feel more in control. And to some degree, that's true in caregiving too. So if your loved one has a serious illness and you don't know much about it, learning about the illness, absolutely that can be helpful. So I'm not saying information is nothing or not useful. It is, but it doesn't solve all the problems. And once you have a kind of full understanding of what's happening, what's the disease, what are the likely outcomes, what are the available treatments for your loved one's disease or symptoms, once you get that, more information above that usually doesn't help. And sometimes it even increases anxiety. And when outcomes are uncertain, meaning we could try this new medicine, but we don't know if it will work, or there's an experimental treatment and we really have no data about whether it's going to help. There's no amount of information that will create certainty when there is no certainty. And that is really important because when we face uncertainty, like the doctor saying, I don't know if this will work, and here's some possible side effects, and they're kind of bad. We want certainty because it's so hard to make decisions in uncertainty and it just feels so bad. And so we think, well, I'll just learn more, I'll look at more websites, I'll read more things, and then I won't have uncertainty. And I wish that were true, but unfortunately, if there really is true uncertainty, nothing we read or learn is going to take away that uncertainty. So at some point, we have to face that uncertainty and make some kind of decision anyway. So it's important to reflect on our own information-chasing behaviors, because as I said, up until a point, yeah, great, information is good. But there becomes a point where it becomes unhelpful, where it increases anxiety, where it doesn't answer any new questions really. And even where maybe now we're looking at sources of information that are not reliable. So it might even give us poor information or take us in the wrong direction. So a question here to ask ourselves is Is there something that I need to know to make the next decision? And is it knowable? Is it knowable? If it's knowable, then yes, we should go try to figure it out. But there's a lot in serious illness that is not knowable. My dad asked towards the end of his life, he was in renal failure, and he asked, well, would dialysis make me feel better? He wasn't looking to prolong his life necessarily, but he wanted to know if it would make him feel better. And I wish there were a simple answer to that question, because sometimes dialysis makes people feel better, at least temporarily, but sometimes it makes people feel worse ultimately. And the going back and forth to the hospital, and maybe now someone's fluid overloaded or they have an infection in the line, or their dialysis catheter gets clotted, et cetera, and they end up in the hospital, they may feel worse. So will it make me feel better? Nobody could answer that question. That was an unanswerable question. And that's hard. It's hard to not have an answerable question. But I know a lot about dialysis, and even I couldn't really answer that question. Ultimately, given that he did not want to go to the hospital, he wanted to be independent, he wanted to be able to travel because he always traveled once a year to a Buddhist bed and breakfast in Hawaii, and then once a year to sculpt in Italy. And if he's going to dialysis three times a week, he wouldn't be able to do those things that were a fundamental part of his life. So, overall, big picture, would he feel better on dialysis? I don't know. I don't know. Despite the medical knowledge I have, I don't know. And at a certain point, there was no more information that could be gathered that would answer that question. So, what do I need to know to make this next decision? And is it knowable? And if it's not knowable, meaning you already know all the things that can be known, and the next part is not knowable, that is the time to stop information chasing, to just stop. Because more information will not answer a problem, a question that is unknowable. Okay, the third one we've talked about before, but it's so important. I'm going to talk about it again, which is this is a strength that can start to work against you. Trying to control the uncontrollable. Trying to have control of things in your regular life can be very helpful. And really competent people are usually pretty good at controlling things. But in serious illness, there is a ton of stuff that we can't control. And when we try to control things that are not controllable, we don't change the outcome in any positive way, but we make ourselves crazy. We bang our head against the wall over and over again and give ourselves a huge bruise, and nothing changes. So we want to try not to do that so much, to try to control the uncontrollable, because it makes us feel crazy and it makes us exhausted and it makes it makes us feel like we're we're missing something. And if we just try one more time, then it will all become clear. And that energy, bringing that energy into the experience of walking beside someone in serious illness, isn't helpful. And in fact, it hurts us. It drains our cup like crazy. So there are things that we can control, of course, getting good doctors, whether or not to call hospice, whether it would be helpful to have a hospital bed and getting one of those. So there are plenty of things that we can control. And of course, we should look for those and try to do things, change things, control things that will make the situation better. But there's so much we can't control. We can't control if the treatments work. We can't, because every treatment works for some people and not other people. And you can spend five million hours on the internet and you still can't know if treatment A is going to work for your person because nobody knows. The doctors don't know. Nobody knows. We can't know about the timing. When is an illness going to get worse? When is someone going to die? We just don't know. We can have ideas, but every person is different. We can't control for sure other members of the family's behavior. We can't control if people show up and do what they say they're going to do, if they are honest with their feelings, if they're cranky or not. We cannot control that. And ultimately, we can't control the outcome of what happens to our loved one. We just can't. We can control what we can, but then we have to let go because there's so much that we can't control. So I recommend that you make a list with two columns. One is what I can control or influence, and the other is what I cannot control or influence. And start writing things down in the what I can control column and what I can't control column. Once you write it down, it's easier to see it, obviously. So if you write some things in the I can't control column, like I can't control when he gets worse, I can't control whether this medicine works or not, I can't control my sister's attitude. Once you see it in writing, it becomes a little bit easier to let it go. So I really recommend that you actually physically do this. Two columns, what I can control or influence, if you like that better, what I cannot control or influence, and fill in both sides, both lists. And then the question to ask yourself is where am I trying to control things that are in the I can't control list? And you want to stop doing that. You want to focus all of your efforts on the things that you can control. So I want you to think about kind of shifting how you use your skills, shifting your skills just a little bit. So for example, you are probably good at problem solving. And what I want you to think about is how can I use that skill that I have of problem solving to learn to make decisions under uncertainty, in the face of uncertainty. So we're used to problem solving with certainty, right? Like I have a problem, let me go gather a whole bunch of knowledge about it, and then I will have the answer. But in caregiving in serious illness, we often have to make decisions where there's uncertainty. But that same skill you have of problem solving, if you turn it a little bit to the side, you can use it to practice making decisions within uncertainty. Now, what about this skill that you also probably have, which is being responsible? You are probably a very responsible person. Most people who end up as involved in the caregiving of their loved ones are uber responsible people. But like I mentioned before, that can shift into overfunctioning, which is not helpful. But can you use that skill of responsibility and turn it to the side so that it becomes discernment? Like what is actually mine? Where can I actually make a difference here? So, as opposed to seeing responsibility to mean I do all the things and I take on all the problems, can that skill of responsibility be turned a little bit so it becomes discerning? Where should I put my responsibility? What is actually mine? Now I bet that you're also pretty loyal and caring. Can you turn that loyalty and caring to the side a little bit and use it to practice setting loving boundaries? Now, that one may seem backwards to you, like, well, how can I be caring and set boundaries? Aren't they opposites? No, they're definitely not opposites. Because if you are loyal, if you are caring and you take on so much with no boundaries that you become completely depleted, you lose your empathy. It's just the way humans are. You'll become crankier. You'll pull away emotionally, even if you're showing up at the bedside. So to really allow your caring and connection and loyalty to flourish, you have to set some kind of boundaries so that you don't get depleted. So can you use that? I want to be a really caring person for my loved one. That need, that skill, turn that to the side and say, therefore, I've got to set some boundaries for myself so that my cup stays full enough that I still have empathy and I can show up as the very best version of myself. So I guess what I'm saying here is it isn't about working harder, being more responsible, taking on more, trying again. It's turn sideways. It's playing a slightly different game than just how do I figure out all the problems? How do I learn what I need to learn so that I can keep it under control? It's not that. It's sideways from that. But we can use a lot of the skills that we have to thrive in this different game that is much more about making decisions within uncertainty, choosing where we put our attention and setting some boundaries so that we don't get so depleted that we just can't do it anymore. So I have three little tasks that I'd like you to practice. The first one is asking yourself the enough question. And the enough question is: what is enough for today? What is enough for me to have done today? Not what's perfect, not what is some magical ideal of what I think a wife or daughter or son or sister or husband should be, but just realistically keeping boundaries in mind. What is enough for today? What is enough for today? Like, is enough today that you sat at your loved one's bedside for an hour and really gave them all your attention? Is enough that you left two messages for the doctor and you wrote down your questions for the next visit? Is that enough? Is it enough that you fed your loved one even though you didn't make the food yourself, you got it sent in? So this is practicing gentle boundaries. What is enough? Not perfect. Please don't shoot for perfect, but what is enough for today? That's number one. Number two is using the regret filter. I think this is really important. This I think is what I kind of forgot to do a little bit with my own dad. This is asking yourself, if things don't go exactly the way I hope they'll go, what will I regret not doing or doing? So what will I regret? If things don't go exactly the way I hope, what will I regret doing or not doing? And then of course you modify your behavior based on that. So it can help you prioritize and cut through the noise and make decisions that really matter. Because if we just think, well, I'll just keep trying, I'll just work harder, I'll just learn more, and we don't think about that, even if we do all that, it might not go the way we hope. We may end up with some regret later that we then can't do much about. So keep that regret filter in mind. If things don't go the way I hope, what would I regret doing or not doing? And given that, what should I change right now? What should I prioritize? What should I let go? And then number three, in the spirit of things we try to stuff, come back bigger. What I want you to think about is saying out loud to yourself. It doesn't have to be to anybody else. Just one really honest sentence. What is some emotion that's bubbling up in there that you don't like or you don't want to see or you don't want to share with anybody else or feels uncomfortable? Just say it out loud because shame thrives in the darkness. So maybe it's something like, I want some help with this. Or I sometimes feel like I can't do this anymore. Or sometimes I wish it were just all over. Or this is so much harder than I thought. Or for me, I have some regrets. I didn't really want to say that to myself because I felt like I'm a palliative care doctor. I should have done it perfectly so I wouldn't have any regrets. And so I stuffed that a little bit. But the truth is, I do have some regrets, and that's okay. So there you don't have to take an action after you say this honest sentence to yourself. It's just because shame thrives in darkness and we want to shine some light. So, what is a sentence that really is bubbling up for you that would be good for you to say? It doesn't mean you have to change anything. If you say, I need some help, that doesn't mean you have to go hire seven days a week all day of nursing care. You don't have to take action. So sometimes we're afraid to say the thing because we think it means we have to take action. This is just about acknowledging the feelings so they don't fester and get stinkier. So what is one sentence and just say it out loud. Just say it out loud. Okay, so those three things are your homework. What is enough for today? If things don't go the way I hope, what will I regret doing or not doing? And what is one honest sentence that I can say out loud to myself? That's your homework for this week. And ponder this idea that yes, nobody prepares you for this, but you actually bring a lot of skills. You just want to use those skills in a slightly different way when you're walking with somebody through illness. All right, everybody, thank you for being here. Thank you for listening. I want to share something with you guys, which is that the name of this podcast is most likely going to change. I've gotten so many wonderful suggestions from you. I won't tell you yet what I'm thinking it will be called, but you're going to find out soon. But I hope no matter what it's called, you'll still keep coming back. And if you have anyone that you think would be interested in what we talk about here, please share this with them. It would really help me if you would go to your favorite podcast place and give a review. And you can reach me through my website, drdilia.com. You'll also find there a new free guide called Nobody Prepares You For This, that has some even more specific guidance than we talked about today. Go check it out at drdelia.com. All right, thanks so much for being here, and I'll see you next time. Bye-bye. Thanks for listening. You can learn more from my book, Coping Courageously A Heart Centered Guide for Navigating a Loved One's Illness Without Losing Yourself, or from my website, drdelia.com. And if you liked what you heard, please share this podcast with a friend, write a review, or subscribe so you don't miss the next episode.