UPMC HealthBeat Podcast: Preparatory and Anticipatory Grief

When a loved one receives a terminal diagnosis, it affects everyone in the family. Elizabeth Schandelmeier, LCSW, APHSW-C of Family Hospice, Part of UPMC discusses ways to cope with the emotions of grief that can arise before the loss of a friend or family member.

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– This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgments when advising their patients. Patients in need of medical care should consult their personal care provider. Preparatory grief – it can impact someone who has a terminal illness. Anticipatory grief can impact their family. Is there anything you can do to cope? Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat podcast. And joining us right now is Elizabeth Schandelmeier. She is a bereavement coordinator and counselor with Family Hospice, part of UPMC. Thank you so much for joining us.

– Oh, thank you so much for having me here today. I really appreciate it.

– We’re glad that you’re here. This is such an important series that we’re doing on grief, and there are so many different kinds of grief. And, really, today, let’s begin by telling folks about these two types of grief and what they really mean.

– So, preparatory grief really applies to the person themselves, the person who’s dying. And I often meet with folks, this is usually pretty close to the end of life, or as they’re going through their own process and coming to their own realization of what’s happening to them. Sometimes, support can be helpful for that person. Anticipatory grief is what we call the grief of folks who are actually anticipating the death of somebody significant in their lives. Sometimes, we call that family. I like to call it amongst the circle of support because there’s so many different ways to define family. I don’t want for anybody to feel dis-included because they’re not legally married or have a blood relationship. So, we like to be as broad as possible with that and understand that even folks who may not be obviously impacted by the death can actually experience a lot of regret, or remorse, or guilt perhaps as a function of not being a part of that family grouping. So, within the circle of support, folks who are somehow in different ways struggling with what’s happening to this person who’s dying, we call anticipatory.

– Is it safe to say that when it comes to the person who has a terminal diagnosis, does everybody go through the same stages? What does that look like?

– A lot of that, of course, depends on the course of the illness, the type of illness, how long the stage of decline is lasting. Honestly, what I often hope for people is that they have enough time to be able to go through their own inner understanding of what’s happening to them. Almost always in cases that folks that I’ve met with, they’re very clear that they’re dying. So, coming to a place of acceptance about that fact can be very helpful for them, helping them find peace and to let go of the fear of dying themselves. Typically, what I find is that they become more and more concerned about the people surrounding them, and they’re more worried about what they’re leaving behind and how it will impact the people that they love, much less so than being worried about themselves, actually.

– What do those conversations look like? We’re talking about someone that is facing the end of their life. So, you know, what sort of hope is offered there, and how do you help them through this conversation?

– The conversations that I have with the dying are among some of the more intense of my responsibilities, but they’re also incredibly rewarding. Being able to support somebody at that phase of their life is really a very special honor. People at this stage of their life, they want the truth. They want to know what you know, and they don’t have any time for fluff or sort of chit-chat. They want to know the answers to their questions. For the most part, I get three different types of questions. Some have to do with the legacy that they’re leaving behind. What will that look like? How will people remember them? Sometimes it has to do with whether or not the people that they love are going to be OK, and will they be taken care of? And then, sometimes, what people really want to know is, what does it feel like to die? Is it painful? And so those are all things that we can talk about, and explore, and make sure that their fears are heard and understood, and if possible, to be addressed. And, so far, at least in my experience, I find these sessions to be very, very helpful for the folks who are requesting it.

– It almost seems like it’s always harder for those left behind. Anticipatory grief – let’s talk about that.

– Sure, and in fact, even with preparatory grief, again, this is a part of the worry, is this anticipatory grief. Oftentimes, we think of grief starting after a person dies. It’s not very often that we talk about the process of dying and the spaces in which people may grieve differently before the actual death occurs. Sometimes, we talk about it starting at diagnosis: when people hear some really bad news and start to dread and anticipate the future and what it holds. Honestly, I sometimes think it starts before the diagnosis because typically, people are going to the doctors because they think something’s really wrong. And a lot of times, people will actually delay going to the doctor’s because they’re pretty sure something is very wrong. So, from that moment of knowing something is wrong, the relationships can start to change. And especially as the physical decline begins to occur, relationships change. So, for example, for a couple, perhaps at a certain phase of disease process, it’s no longer comfortable to go out to dinner. Maybe the person has trouble swallowing and they’re embarrassed to eat in a restaurant. Or, maybe they are less inclined to socialize because their speech is not as clear or their mind is a little bit foggy. And so, they’re a little less comfortable having friends over for dinner every Saturday night like they have done for the past 20 years. And so, when these shifts are occurring in relationships as a function of the disease, each of those phases is actually a very permanent change and can absolutely bring on a grief response. You’re mourning the pieces of your life that are no longer possible with this person. You’re mourning the parts of your relationship that are beginning to fade. It is buffered by having your person still be alive. You can still hold their hand, you can still kiss their cheek. And, so, we don’t like to think about it as grief because of that. But you are mourning certain phases along the way as you’re giving up parts of your relationship or the relationship is changing in nature. You’re becoming a caretaker, or you’re less able to go visit them. All of the different ways in which things change can absolutely trigger a grief response.

– So, is it almost worse because it’s double the grief? You’re grieving before the person passes, and then, of course, you’re going to grieve after the person passes, rather than if, you know, someone dies suddenly, you don’t have this anticipatory grief because it’s so unexpected?

– You know, it’s funny. I actually get this question a lot: Which is worse, to die quickly and suddenly, or to die after an extended illness? And the truth of the matter is they’re both terrible. They both have different types of challenges that come with them. If somebody dies quickly, people often feel, “Oh, I didn’t have the time to say goodbye.” If people die very slowly over a prolonged period, there is a lot of process to go through. But going through that process isn’t necessarily a bad thing. It’s hard to watch, of course, but that doesn’t mean that it’s unhealthy. It is a way of being able to say goodbye. There are a lot of things that can happen. A caregiver can be under a tremendous amount of stress and physical obligation. And so, you know, the exhaustion can set in very early. The other part of the anticipatory part often happens just before the person dies. And this can be a time when people really struggle because the person is clearly at end of life. Things are sort of slowing down. Perhaps they’ve become unresponsive. Mostly, they’re sleeping. They may wake up a little bit here and there. And oftentimes, people who are surrounding them, they’re really conflicted because on the one hand, they don’t want to see their person suffer. They understand what’s happening. They know they’re going to die, and they don’t want them to have to suffer through any of their symptoms any longer. On the other side, they also don’t want to see their person die any sooner than they have to. So, there can be this conflict. And then you add to that, of course, practical concerns where people have to go to work, they still have to pay their rent, they still have to pay their, you know, their car note or whatever it is. And so, this is a time when there’s often a lot of conflict. People no longer have a lot of PTO, or their FMLA is running out, or whatever the circumstances. And so, feeling torn in all of these different directions can be very, very, very hard on families.

– So, is there anything that someone can do in the middle of anticipatory grief, or do you just have to wait it out and then deal with everything on the other side?

– It’s my opinion that there’s a lot you can do.

– OK. Let’s talk about some of that.

– But it’s not always easy for families to access the resources that may or may not be available. It is my opinion that at diagnosis, when a person receives a terminal diagnosis, that it would be very helpful for these families to be followed by a professional: either social work or mental health professional, to help them go through the adjustment process, and also to help them understand that they are grieving, and to put some words to some of the feelings that they’re having, and to let them know that they’re not alone. Certainly, caregiver support, the kind of fatigue that can happen with that, and isolation. And also, just dealing with the feelings that you have when perhaps the person you’re with is the person that you typically would’ve talked about these things with. And it’s interesting because the person who’s dying does not always want to burden the people who they leave behind with the feelings that they have. And so, there can be a lot that remains unsaid between family groupings or these circles of support, where if you have a little bit of support and facilitation, those conversations can start to flow again. And you can use the words that otherwise might have seemed too scary to say in front of somebody who’s dying. Or, for the person who’s dying to say to their family that they understand what’s happening to them. They may not want to see their family suffer through their understanding of where they are. So, that’s one space that can be helpful. As we approach the death, I’ve found that it’s very helpful to help support families understanding what is happening, what does it look like, what are the signs and symptoms, what can they do? So often, people feel like once a person is sleeping most of the time and they’re generally unresponsive, there’s a lot of just sort of sitting there. And, people feel like they don’t know what to do, they don’t know how to be helpful, they don’t know what their role is. And that is also another part of the anxiety and the stress is that you’re just sort of sitting there. You feel like you’re just sort of sitting and waiting. And that can be really hard on people.

– So what are some of the things that folks can do to help cope with this?

– Well, if you’re a person who is really struggling during this last part, first of all, know that it’s normal to have these conflicting feelings. Just because you don’t want somebody to suffer and you don’t want them to die any more quickly than they have to, those two things don’t seem compatible, but they are compatible, actually. And, in my opinion, that is the absolute definition of compassion: is wanting for somebody else what is best for them, even though it’s going to break your own heart. So, this is the funny thing about grief, is you can feel all these different ways about the same thing in the same moment. And so, I think just hearing that sometimes is a relief for people to know that it doesn’t make them a bad person to have these different feelings. Another thing that I think is really helpful for a lot of folks is to understand that they do actually have a very important role and function – that, when a person becomes unresponsive, if you can imagine, this is really one of the most vulnerable parts of their life and the most vulnerable condition that they’ve ever been in. There’s no way of knowing how long that may last. Doctors can take excellent guesses, but nobody knows when that final moment is actually going to come. And sometimes, it can draw out. It is my opinion that the family’s responsibility in that space is to advocate for their person and allow them, be a guardian for them, allow them to have the time that they need to go through their own inner experience and whatever it is that they are working through in their own selves, this is their very special time to complete their time on this earth in their own way. This is the part that is their personal experience. And so, if the family can really just be present for that, and allow that to happen, and think of themselves as the guardian of this person in this very special part of their journey, I think that can be very valuable for folks to understand.

– Should a family member raise the conversation? Should they say, you know, “Mom or Dad, is there anything that you want to talk about?” Or, do you find that will just unfold naturally?

– I don’t necessarily think it unfolds naturally. It’s interesting. After a death, I often hear that folks really regret not having had certain conversations, or conversations at certain times, or conversations in certain ways. And the truth of the matter is these conversations typically unfold in ways that would’ve been very common for the time when the person was alive before they died. As a person dies, they become more and more themselves. So, a person who has never talked about these kinds of things becomes increasingly less inclined to talk about these kinds of things. A person who’s very, very open and talks about everything becomes more inclined to do so. Part of it is recognizing and realizing that just because a person is dying doesn’t mean that they will change into being somebody else. The flip side of this that I think is really beautiful is that they also want the people that they love to continue being who they are. And, what I mean by that, is I often have people who are so concerned because maybe they lost their patience in a moment, or maybe they said something that was a little bit more fiery than they feel was appropriate. But the truth of the matter is, when a person is dying, they want the person that they love. The person that they love is a full and complete human being, and the relationship that they’ve had has been built over time. If you’ve said something fiery to your person towards the end of their life, I highly suspect that those kinds of conversations had happened before then. And that is what’s comfortable for the person who’s dying. They don’t want some new person, some new improved version of who you are. They just want you to be you. They want their conversations with you to be normal in the context of the relationship that you have. And so, in that sense, whatever the conversations are at the end of life, as long as they reflect your true feelings and who you are, then they are wonderful ones.

– I know that in our previous podcast, you talked a lot about being gentle with yourself. Can you talk a little bit about that in the context of both the person who is ill and the family members?

– Absolutely. For the person who is ill, when I talk about being gentle with yourself, it is overextending your worry about the burden that you’re placing on others or the stress that you’re causing others. This can be out of proportion to what the folks who are supporting you are actually feeling themselves. Often, you see this with people who are more typically inclined to be givers. They’re used to doing for other people, they’re not used to having people do for you. But what we know about doing for others is that it feels good. We do for others, it fills our heart. We’re happy to see that we’ve made an impact. And so, I encourage folks who are ill to allow others to give to them because that’s a part of their gift is allowing other people to feel good that they’ve been able to support them through their death. Because that is definitely something that their caregivers will hold with them, is how much they worked and how hard they tried to make everything wonderful for this person before they died.

– And so, what about the family member or the caregiver in terms of being gentle?

– So, in terms of being gentle, I think No. 1, the first thing I remind them is that we’re all human. Human beings aren’t perfect. Sometimes we get tired. Sometimes we need to eat. Sometimes we get cranky. You’re probably not sleeping well, you’re not eating well because you’re not even taking care of your own health. This is a big one because when you’re totally involved with caretaking for somebody else, it can be very easy to forget all about your own needs. As human beings, we can stretch ourselves only so long. Eventually, it really is too much of a burden to expect ourselves to be entirely perfect at every moment. So, being gentle with yourself in terms of the anticipatory side of things really looks like allowing yourself a little bit of grace and just not being hard on yourself if something doesn’t go exactly according to plan or if you haven’t remembered to do all the things that you said that you would do. It’s probably a function of your exhaustion and not a function of who you are as a person.

– What can you do if you are a friend of this family that’s going through this? What’s the best way to support the caregiver whose entire focus is on supporting this other person?

– Yeah. That’s a great question. Friends, family, the extended support network, can do so much here. My first advice is to be concrete with what you have to offer. Often, when people are going through the situation where somebody’s dying, they are so focused on what they’re trying to do to care for this person that they can’t think about all of the other stuff. They can’t think about what might be helpful, or what they might like to eat, or where you should order dinner from. So, if you’re going to offer assistance, it’s really, usually, much more helpful to say something like, “Hey, I would like to bring you some chicken soup. Is 5:00 a good time?” Or, “I’d like to come clean your bathroom because I know that’s something that’s hard for you to get to. I’m going to sneak in the back door at 10, and I’ll be out of your house by 11.” “I’d like to come, and if you want to just go out and go see a movie or walk around the block, I know you don’t want to be far, so maybe you just want to take a walk around the block. I would be happy to come and sit with this person so you could have a little break.” Things like that, things that are very clear where they don’t have to make a lot of decisions about what you should or shouldn’t be doing. You can also offer to run sort of pass interference if you like. If they have information that they want to share with a larger community, you could be a conduit for that. You could offer to be the telephone tree, you know, that one person that they call, or that they email, or that they text message, that you could be the person responsible for sharing that information. Sometimes, that can be very helpful. If a family, for example, is having trouble finding a funeral home or other kinds of information they might want to use, you can say, “You know what? I will go look all of that up, and bring three options, and tell you what they’re all about. And then you can pick from that. Would that be helpful?” Doing some background research into different things that the other person just may not have the energy to do themselves.

– You touched on this earlier, and I’m wondering, does any part of the anticipatory grief make the grief easier on the back half because you’ve already gone through this journey?

– Wouldn’t that be nice? I don’t know that it makes it easier, though there’s only one way that I can think of that it might even make it harder. And this is something that I caution folks about, is that when we are watching a person’s health decline, and we know that the diagnosis is terminal, and we see that coming, often we think we’re prepared. We know what it’s going to be like. It’s going to be hard, it’s going to be sad, it’s going to be awful. But, you know, we can get through it. The more prepared we think we are, the more surprising it is that the experience is nothing like what you imagined. So, it can be a little shocking to feel the depths and the intensity of the grief after a person dies when you thought it was going to be one way and it turns out to be another. And it almost always is.

– You always talk about normalizing grief, and that’s why we want to have these conversations.

– Yeah.

– So, if someone is going through a family situation like this right now, if they’re not seeking professional help, they’re probably thinking in the middle of all of this, the last thing I have time for is to talk with a counselor. Are there other things you would say that they should do if they’re not going to see a professional?

– Sure. I understand, especially finding or seeking outside help can definitely be a challenge. But maybe check in with whichever medical teams you’re working with, whether it’s the hospital team, or the palliative team, or the hospice team, to see if they have any resources. Folks who can just bring them to you, so that you don’t have to go out there and look for them yourselves. That’s one place that you can look. The other thing, I think, is really just to call on your support networks. Don’t be afraid to ask for help. So often, we want to do everything ourselves and we don’t want to burden others, but this is that time. This is when I remind people, “You know, you are that person. If you were somebody else looking at your situation, what would your response be? What would you do?” And they almost always say, “Well, of course, I would take them food, or I would send them a grocery store certificate.” OK. Well, if that’s what you would do for others, then let others do that for you. And you might be benefited by asking for that help yourself. It’s good practice.

– Right. And even if someone is not seeking out professional counseling now, that doesn’t mean they can’t in the future.

– Oh, absolutely not. Counseling is always available at any stage or any of the various points of time. That’s no problem at all. When you are comfortable with it, when you feel like it would be helpful, that’s the time to go. Yeah, no problem.

– And what do you want to say to people about the approach in counseling? It’s very much not you dictate, it’s you meet them where they are.

– Meet them where they are, and in exactly that moment. Whether it’s before a death or after a death, the idea is to provide support, counseling, and companioning and to help walk them through, especially the places that they thought might be different than what they’re actually experiencing. And a lot of people like to check in and just make sure that their experience is within this very wide range of what we call normal. I think we’ve talked about that before. The range is very wide. And so, just to see if there are things that might be helpful for them to learn about, or talk about, or just be able to express. Some of the things that people like to explore, or some of the thoughts and feelings that they have, some of the memories that they’re moving through, whether it’s guilt or regret, how the care took place, where the care took place, what that care looked like. All of these things can change a person’s grief trajectory with great magnitude. So even if you thought, OK, you know, I’m working through this pretty well, don’t need to speak to anybody as we’re going along, what I remind people is that when a death occurs, it’s in that very moment, however long a moment takes for the breath to stop, that all of a sudden your world is radically different. You know, the disease may have taken a really long time, but that very moment your world is completely turned upside down. And, most people aren’t prepared for how sudden that feels, even if they’ve been preparing for it for a long time. So, even just having somebody to talk to about that experience, I think a lot of people report to me that they find that very helpful.

– Elizabeth Schandelmeier, thank you once again for coming in and spending time with us again. Some really good information. We appreciate your help.

– Thank you so much for having me.

– You’re welcome. I’m Tonia Caruso. Thank you for joining us. This is UPMC HealthBeat.

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