256. How to Love Fully When You Know Loss Is Coming
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Henry: Hello, I'm Henry Emmons and welcome back to Joy Lab.
Aimee: And I'm Aimee Prasek. So we are in our Grief Series right now, and today we are exploring the Eighth Gate: Anticipatory Grief. This Gate addresses the fear of what is to come β the grief we feel in advance of an expected loss. This is particularly relevant when someone we love is terminally ill, but it's, more than that as well. It's the grief of knowing something precious is ending. Watching a parent decline with dementia, knowing a marriage is ending, sensing that the world your kids might inherit will be diminished, like, the health of our planet or political instability.
So we all experience anticipatory grief when it [00:01:00] comes to our individual and collective futures . And with this Gate of Grief, there is that additional frosting on top β of dread, or helplessness, or worry in relation to the event that has yet to come.
I've had two experiences with this in the last few years that have been particularly hard that I think folks might be able to relate to.
My best friend of 35 years died in 2023. It was cancer, eff cancer, and the last three or so months when it was clear that she was dying, it was really hard to stay present in the moments with her. I would be there and then I'd be off in my head thinking about how terrible the world will be without her, how I won't have a best friend anymore, how I'll have to make a new best friend and that would suck, and they won't measure up, [00:02:00] and that's a lot of work, and then I'd come back to her, be back in the moment, and then I'd be back out there, to thinking about her dying. It's just, it's such a hard space to be in and there's, um, you know, I'd feel bad about it. And, you know, the other experience little different though too, has been with my mom.
So she has Alzheimer's, and I just find that I'll be with her... so I'll be present with her and then before I know it, I'll be in my head doing an inventory of what she remembers now and what she'll probably forget tomorrow. And feeling sad about that and what we won't get to do, thinking about those things that we'll miss out on together as mother and daughter. And then I'll come back to her, and then I'll go back out to anticipatory grief of the day she'll completely forget me. So all in different ways we'll experience [00:03:00] this, but we will all experience this and it is really tough.
Henry: Mm, you said it, Aimee.
Aimee: Yeah.
Henry: Yeah. So before I launch into saying much about this, I just wanna acknowledge that this is a really tough one for me to talk about.
As I shared a few episodes ago, my wife was diagnosed, about six years ago now, with early onset Alzheimer's disease, and she just entered memory care about six months ago. I have learned a lot about grief through experience, but I'm still processing it and frankly was overwhelmed by it.
Aimee: Hmm.
Henry: So I'm not sure if I'll have much to say that's of real value 'cause I haven't really made sense of it yet for myself. But I'll do my best.
Aimee: Yeah, you know what, what you are just [00:04:00] describing, Henry, reminds me ofβ in Francis Weller's Gates of Grief that we're working on here in this series, he talks about how weβ I think this is him. Maybe it's you, Henryβ talks about being, shoot, got all my
Henry: I'll let you know if it's me.
Aimee: People I adore are getting mixed up.
Um, how we are apprentices to our grief. Is that you, did you say that?
Henry: I might have.
Aimee: Somebody wise has said this before.
Henry: I think I might have, Aimee.
Aimee: Well, let me remind you about that then. Um. I think this is... we are apprentices to our grief, every flippin' time. Like every time grief comes in, we are new apprentice to it. Studying under it, with it. And we can certainly get better at it, but we're never gonna be mastering it, we're always gonna be [00:05:00] apprenticing it. So, I just love that you're willing to share that apprenticeship because that's what it is.
So let's get into it, that kind of anticipatory grief, like in our more personal lives first, let's talk about that. We talked about a related experience in an earlier Podcast. We called it F.O.B.O.: Fear Of Being Over. We made that acronym, think, anyway.
Henry: You made it up, Aimee, and it's great. I love it.
Aimee: It is, and I very much resonate with it: Fear Of Being Over. I don't have F.O.M.O., I don't have fear of missing out. I can miss out. But if I do attend the event, then I will have F.O.B.O. , Fear Of Being Over, which is maybe why I don't have as much F.O.M.O. 'cause it just leads to F.O.B.O.
Anyway.
So, we noted that this fear, this anticipatory grief that rises up, can actually be a cue to come back to the present moment. And I wanna talk about those [00:06:00] kinds of strategies and the skills of this Gate of Grief, but I first wanna like, normalize this stuff and remind us that the goal of this Gate is [not to] stop this kind of anticipatory grief. Not to soak in it, but we don't need to stop it, and that's because this kind of response makes sense.
Anticipatory grief is normal. It's how we kind of prepare for a loss. Researchers have found that anticipatory grief can actually be helpful. Studies of folks whose spouses died, found that those who did some grieving before their death had somewhat better outcomes afterward.
I think that's super interesting and it's not because they grieved less, but I think in part it's because they realized that, yes, they'll lose this person, so back to that first Gate, everything we love, we will lose, so there was an acceptance in that reality. And as we talk about here, acceptance is that first [00:07:00] step, or maybe second step after seeing what is, but it's an early step toward healing and growth.
And also, if you've lost someone, you know that when a person is dying or soon after they die, that's when people are around. And then a month or so after their death, folks are back into the rhythm of their lives and it's just like, then it hits you. The silence, that void kind of hits. And that's when it gets real, I think.
The loss starts to hit And so for folks who had some of this anticipatory grieving, I would guess that they were able to do that in a more shared way, with more support, so they were starting their grieving a little earlier and they were starting it with more support. And it's not that they didn't grieve later either, it's just that they maybe started a little earlier and established more connections of support that maybe stayed with them in those later months when folks stopped checking in.
Henry: Mm-hmm. [00:08:00] Well, as you know, Aimee, and as I've said on this Podcast before, I am by nature an optimist.
Aimee: Yeah, I know.
Henry: And when it β I know, it drives you nutsβ
Aimee: I'm just kidding. I love that about you. Good for you.
Henry: but when it comes to big life challenges, it seems as though my approach is that I think I'm gonna be able to figure it out. I'll handle it, until I can't. So, when my wife and I first went to the Mayo Clinic and got this diagnosis, and basically they said there's not much they can do, I responded by getting mobilized. I'm a believer, as you know, in the power of lifestyle medicine, and natural therapies to change the course of illness. So I started to research; really get into [00:09:00] diet, nutritional supplements, exercise, sleep, brain exercises, anything I could find that might alter the course of Alzheimer's. And there's actually a lot going on out there, you know, so for those who catch it early, there's a lot of new science that I think is reason to be hopeful.
But kind of early on, I caught wind of a study by a cardiologist named Dean Ornish. That name might ring a bell, 'cause 25-some years ago he did a very famous study showing for the first time that you could reverse heart disease through diet, exercise, mindfulness, and social connection, those four things. And I found out that his group was starting to do a similar study on Alzheimer's, which seemed perfect. So I got in touch with them and they thought that Jane was an ideal candidate. She [00:10:00] was young, otherwise healthy, early in her disease. And so, they, you know, the idea is that these kind of measures had a better chance of working.
So it sounded great.
And part of the deal is that they were gonna provide us with all of our food, both of us, 'cause me being the caretaker/caregiver and it was about nine months worth of really good, healthy, vegan diet. And then also they were gonna give her a regimen of nutritional supplements that they were hoping to show also supported healthy brain function. And then in addition, there was a regular online support group for social connection, although Jane already had that pretty well covered, you know, just tons of friends.
So, for a few months we were so excited about this and really, they assured us that she was a great candidate, and we just went through the steps we needed, to get her enrolled. And then we had our [00:11:00] online assessment with their neurologist. And I sat with her in front of the computer to help with technology, and I saw this whole thing and I could not believe it. She only answered, I think, one question right.
And I was shocked.
I couldn't believe that her memory was already that bad, but I still had hope that this study, you know, being enrolled in it and doing all these things was really gonna help. But then a few weeks later, I got a call from the nurse coordinator, who had been so kind and encouraging to us. And she felt terrible because she had to tell me that they couldn't accept Jane in the study, because her disease was already too far advanced.
I felt like I'd been hit by a truck, honestly. It was [00:12:00] the first time that the immensity of the grief broke through my sense of optimism. And when I got this call, I happened to be traveling with a few of my guy friends, and I just had to go off by myself to cry, and for a long time. Once I started, I could not stop. And I don't even know how long it went, but it went until I was done and couldn't do it any longer.
And truth be told, it was really cleansing for me. Painful, but cleansing. It's just kind of like it cleared me out of all this stuff I've been holding on to. Soldiering on, trying to be strong for my wife. I needed that, to puncture the wound and start letting this stuff out. So that was probably the first real experience of [00:13:00] grief. The first of many, unfortunately, because Alzheimer's is just one loss after another. It is relentless.
Aimee: Yeah.
Henry: It's horrible. But on the other hand, it's an incredible training for how to grieve. That's my optimist, Aimee.
Aimee: Yeah. I love that. Yeah, it is. You're right.
Again and again, you get to train. Yeah.
Henry: Yeah. So what strikes me about this is that anticipatory grief is really about acceptance.
It's, it's about facing the truth of what's coming instead of pushing it away, and that takes courage. When I think back to my own journey with this, I realized that my initial response, all that research, mobilizing, trying to find solutions, it wasn't [00:14:00] only optimism. It was that, but it was also avoidance. I just wasn't ready to accept what was happening.
And you know, maybe I needed more time. Maybe we all need to just move through our own process of coming to terms with what we can't change.
But there does come a point where avoidance and denial stop serving us and we just have to let ourselves feel whatever is there. And I think that's when grief breaks through.
So as I think about anticipatory grief, I think it can actually be a gift, you know? Not that it feels like one at the time, believe me, it didn't for me. But when you know loss is coming, you have time. You have time to say what you need to say, time to be present in a way you might not be otherwise, time to love fully, even while you're [00:15:00] grieving.
Aimee: Yeah. Yeah, this is a gate that really encourages us to start practicing loving fully amidst grief. I love that. So how can we do that? How Can we do that rather than get stuck in avoidance, or getting so caught up in the grief that we miss what's right there still in front of us? And I think something to first consider is to be kind to ourselves, particularly with this feeling that we shouldn't be grieving while the person is there.
As I talked about early on, I think there's a lot of pressure to like, stay strong, think positive, don't be sad while the person's still there. And sure, I mean, like there'sβ Henry, you've spoken to this in our earlier episode. But yes, as a supporting a spouse who's going through the dying process, yeah, you wanna be sort of a, a [00:16:00] beacon, a person of strength.
And there is power in that space of opening up to that grief, and not getting stuck in that avoidance, or that denial, so that you can move through grief with that person too. What a powerful experience.
So you know, as we've gotten into during this series, grief isn't wrong, sadness isn't wrong; it is love in the form of grief. So you can hold both. That's the practice of equanimity, holding both the grief about the future and the goodness of the present. I'm not saying it's easy, but they can happen together.
Henry: Mm-hmm. Yeah. Let me, let me say something about what needs to be said, ' cause I think one of the most important things we can do when we're losing someone is to really say what we need to.
There's a hospice physician named Ira Byok who wrote about what he calls "The Four [00:17:00] Things That Matter Most", and these are four simple statements that can have a huge impact. Here they are.
Please forgive me. I forgive you. Thank you. I love you.
Aimee: Hmm.
Henry: These might not be easy to say when grief is sitting heavy on your chest but saying them, imperfectly even, creates a sense of completion; you know, not that the grief goes away, but there's just less that's left unsaid; there's less regret that we have to carry later on.
So, I'm working to forgive myself for the times I wasn't as patient with Jane as I wished I'd been, and believe me, it pushed me in that regard. Or for the times I was maybe focused on trying to fix things instead of just being present.
The truth is we just cannot do this perfectly, you know, we're [00:18:00] gonna miss things. We're gonna miss precious moments, we're gonna get caught up in our own fear and sadness, and not show up the way we want to, but we can keep coming back. We can keep choosing presence over and over again, even when it's hard to do.
Aimee: Yeah, thanks for bringing those up.
Please forgive me. I forgive you. Thank you. I love you.
But it just reminds me of my dad who died, it was a sudden death and one of the things that stings me the most is, the morning before he went missing and died, he said, "I love you," and I ran out of the house and I didn't say I love you back.
Henry: Hmm.
Aimee: It's just like, ugh, it still hurts me today. And to your point Henry, when you were saying that, these types of anticipatory grief can be such a great training, but also there's an opportunity to be able to share [00:19:00] that grief with somebody, and to say those four things. And to have that conversation together, what a gift.
And it doesn't necessarilyβ I'm not saying it makes the grief easier, but it's maybe one less thing that doesn't hurt so bad, as grief comes in different forms, but those words ring true because those are certainly the ones that, like, sting me the most. That I have these moments of, oh, if only I could have said that.
Well, you know, in a sense, you missed out on the opportunity for anticipatory grief. You didn't know, and so you didn't get the chance to intentionally be able to say some of the things that you might have really wanted to say.
Yeah. Yeah. I think folks, all of you who have experienced somebody who, died suddenly, you've replayed that morning or that night, or, "God, I wish I would've told them that one thing." Yeah. So there is this gift in anticipatory grief that, [00:20:00] oof, if we can get some courage, which we can; practice some skills, not do it all at once, but we can start to work through this process. So, coming back to anticipatory grief, and tending to our own wellbeing, I think an important thing to do is to really check in with your energy levels, and do your best to make sure that you are taking in enough support and nourishment, 'cause this kind of anticipatory grief can be really exhausting.
We've talked about that here, lately.
Henry: Oh my God, yes. I couldn't agree more.
Aimee: Right? And it's, it's physically exhausting; emotionally, spiritually, all of it, all of the facets of wellbeing are being taxed. And it's also a kind of split attention. It's cognitively exhausting. You're holding grief in two places, and sometimes for quite a while, depending on the circumstances, and I think that's really hard.
Henry: Yeah. Yeah, [00:21:00] the energy is an area where I really struggled.
Actually, I'm still kind of coming back from it. I found myself more tired than I have ever been in my life by far. You know, not sleeping well, not eating super well, not spending as much time with friends simply 'cause I couldn't, I couldn't leave her alone.
And what I learned, probably a little late, is that you simply can't sustain that. You have to take breaks, you have to let other people help, you have to do things that are nourishing to yourself, even if you feel like it's either impossible or selfish to do. It's really not about being strong, it's about being sustainable.
'Cause if you burn out, you know, it can take a long time to come back from that. You're not good for yourself or anybody else. So find those small ways to refuel. [00:22:00] Maybe go for a walk, call a friend, sit outside for a few minutes and just notice your breath. Whatever it is, just don't wait until you're completely depleted. Build it in now.
And let people support you. People wanna help. They just oftentimes don't know how, so, tell them how. Be specific. Can you bring dinner on Tuesday night? Can you sit with her a while, while I go to the store? Can I just call you and emote for a little bit?
And then one last thing I'll say about this is that I think anticipatory grief is more like a marathon than a sprint. You have to kind of pace yourself. You don't have to grieve all at once. You can step back, take a breath, enjoy those moments of lightness, and then come back to it. That's not denial. That's wisdom.
Aimee: Hmm. [00:23:00] Yeah, it is a marathon. We're all gonna run that marathon at some point; we'll all experience this anticipatory grief; we need lots of care during it.
So I hope those of you who are maybe amidst this right now can gather some tools, know that you are not alone, and all of us can practice this in little ways so it doesn't take us down so hard.
Now, next episode, our last of our Grief Series, we are gonna focus on every grief we've missed, so β that'll make sense next time β and we'll close with some helpful takeaways as well so that we can continue to train, practice, be apprentices to grief in ways that help us to open up, to feel more freedom, and that help us heal and grow.
So, to close our time today, I wanna share some wisdom from Rilke. This is, this has [00:24:00] gotta be your favorite quote, right, Henry?
Henry: It is possibly my favorite quote.
Aimee: Alright. All right. Yeah. So let's soak in it. Here it is.
"Let everything happen to you: beauty and terror. Just keep going. No feeling is final."
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