Anticipatory Grief in Caregiving: Grieving Before Death While Still Giving Care with Terri Chaplin - Episode 262

In Episode 262 of the Caregiver Relief Podcast, host Diane Carbo, RN, sits down with grief companion and educator Terri Chaplin. Together, they explore what anticipatory grief feels like, why it triggers feelings of guilt or shame, and how to practice self-compassion while managing daily caregiving duties.

🎧 Episode Highlights

• 💔 Understanding Anticipatory Grief: Grief doesn't start only at death; it begins the moment a diagnosis, decline, or life transition alters your shared future.
• 🎭 The Many Faces of Grief: Beyond sadness, anticipatory grief can manifest as anger, anxiety, fatigue, guilt, or resentment—all of which are completely normal responses.
• 👤 Loss of Identity: Caregivers often mourn the loss of their own personal freedom, routine, and previous relationship dynamic with their loved one.
• 🫁 Nervous System & Physical Impact: Carrying grief puts the body in fight-or-flight mode, resulting in physical symptoms like fatigue, pain, or loss of appetite.
• 🤝 The Power of "Holding Space": Why sitting with grief—without attempting to fix it, rush it, or offer toxic positivity—is essential for true healing.

📌 Episode Outline

1. Introduction & Background

• Host Welcome: Diane Carbo introduces anticipatory grief and guest Terri Chaplin.
• Terri’s Journey: Terri shares her personal story of loss (losing her first husband and her son, Tyler) and how it led her to become a certified grief companion and HeartMath mentor.
• Diane’s Personal Story: Diane reflects on the losses of her mother and her veteran son, highlighting how grief profoundly alters one's life trajectory.

2. What is Anticipatory Grief?

• Defining grief as a response to change rather than solely physical death.
• Grieving changing relationships, lost future plans, and former versions of both the loved one and oneself.
• Clearing the misconception: Experiencing anticipatory grief does not mean giving up hope.

3. Overcoming Guilt, Shame, and Mixed Emotions

• Why caregivers experience anger, frustration, and resentment—and why those feelings are normal.
• The power of verbalizing emotions in a safe space or journaling to remove power from shame.
• Flipping the script: Treating yourself with the same compassion and grace you would give a best friend.

4. Somatic Effects & Nervous System Regulation

• How grief impacts the body physically (fatigue, loss of appetite, aches).
• HeartMath techniques and heart-focused breathing for regulating fight-or-flight responses.
• Quick Grounding Tip: A simple, discreet tactile exercise ("Peace begins with me") to regain calm during overwhelming moments.

5. Identity Shifts & Unseen Caregiver Grief

• Mourning personal freedom, spontaneous plans, and previous roles (spouse to caregiver, child to parent).
• Societal gaps: Why society offers sympathy after death, but leaves caregivers isolated during the prolonged illness phase.
• Fostering open, empathetic communication between caregivers and care recipients.

6. Practicing Space-Holding & Micro-Restoration

• What it truly means to "sit with grief" rather than trying to fix or minimize it.
• Small, accessible daily habits for restoration: 10 minutes in the sun, a warm tea, grounding walks, or journaling.

7. Closing Words & Resources

• Terri’s primary message: You do not have to carry this heavy weight alone.
• Where to connect with Terri Chaplin and access free caregiving grief resources.
• Final encouraging reminder from Diane: Caregivers are the heart of caregiving, and self-care is essential.

🌐 Connect & Resources

• Guest: Terri Chaplin | Connect via Facebook at Terri Lynn Chaplin or visit myhealingheartscommunity.com for free caregiver grief resources.

Podcast Episode Transcript

Diane: Welcome to the Caregiver Relief Podcast. I'm Diane Carbo, RN, your host. Today we are talking about a grief many caregivers experience but may not have the words to describe: anticipatory grief. This is the grief that begins before the final loss. It may happen when you're caring for someone with dementia, a terminal illness, when you're observing serious decline of your loved one, or a life-changing condition.

You may still be giving medications, making meals, going to appointments, and managing daily care, while also grieving the person your loved one used to be, the relationship that has changed, or the future you thought you would have. My guest today is Terri Chaplin.

Terri is a grief companion, I like that term, and an educator who supports people through death, divorce, identity shifts, and life transitions. She is known for her ability to sit with grief without rushing it, fixing it, or minimizing it. Her work blends grief education, nervous system awareness, and heart-centered practices to help people feel seen, safe, and supported Terri also trains professionals who want to support grieving people with more compassion, confidence, and integrity.

Today we are going to talk about anticipatory grief in the caregiving role, why it can feel so confusing, and how caregivers can honor both their love and pain while still giving care.

Diane: Terri, thanks so much for joining me. This is a topic that so many feel and they just don't understand. But before we talk about anticipatory grief, can you share what led you into grief work and what it means to be a grief companion?

Terri: Sure. first of all, thank you for having me. It's an honor to be here. Any opportunity I have to talk about really all things grief is an opportunity that I welcome. I think we don't talk about it enough, so thank you very much for inviting me and sharing this conversation with me today.

So I got into this work about seven years ago, really following, I had some pretty, major losses in my life. My first husband passed away, due to complications with renal failure in 2005. And seven years later in 2012, my son and only child, Tyler, was killed in a car accident.

Diane: Oh.

Terri: And that's really the loss that changed everything for me.

You know, they say grief changes us and, it certainly, it changed me. It changed the way I looked at the world. It changed the, really the trajectory of my life. I had been in the same career for a long time. When Tyler passed away I had been there for over 20 years and I started feeling this nudge to do something different with my life.

Like I needed to be doing something that would make a difference. Kind of like I felt like I wanted to live my life for both of us since he was no longer here. I wanted to do

Diane: Yeah

Terri: to give back, to make a difference in the world, to honor him if I could. And I found myself just naturally reaching out to other moms in our community when I saw something about, a child passing away.

And I'd stalk them on social media and just send a message. And my goal was just to say, "You're not alone." because I didn't really have that. I didn't have anyone, that really understood what I was going through. I went through my employee assistance program to try to find grief support.

And, through no fault of their own, most of the therapists that I went to, I tried, I wanna say three or four, but they didn't really have a lot of, training in grief work itself, and I felt like they were just trying. Nobody would just listen to what I was feeling and give me a space where I could share that.

Fast-forward a few years, the nudge didn't go away, and I decided to just walk away from my career at 29 and a half years at that time. And, I found a lady that was, certifying others to become a grief companion. And I went through that training, and I've also... I'm a HeartMath certified mentor, so I've done, a few certification programs through the HeartMath Institute, which I love, and I bring that into my grief companioning.

And what that really means to be a grief companion is, I hold space for grief. I sit beside others in grief. I am present. I listen. I'm not there to try to fix anything because I don't believe grief is something we can fix. I don't offer the platitudes that, you know, most people are quick to reach for.

I don't try to rush the process. I bring a deep understanding that grief is unique to the individual. And, my role is there to honor that at whatever pace that person is moving at and wherever they are in their grief journey. and I do, bring tools into it. So there is, support there, aside from me just being present and listening.

But I feel like that's the most important because that's what we don't get from our friends and family. Everybody gets tired of hearing about it. And I use a lot of, guided visualization. I do somatic guided visualization, use my HeartMath techniques all the time because I love them.

But, that's what it really means to me, to be a grief companion. So just walking beside someone, not leading. I'm just there to hold space and to offer whatever support they need in the moment

Diane: Terri, I lost my mom at the age of 18. I was a freshman in nursing school. I had been her primary caregiver.

My dad worked all the time as a letter carrier and had several jobs. helped her through her, lung cancer, and, that was traumatizing enough. I mean, I grew up. And when you say about, grief changing you forever, that one experience changed the way I lived the rest of my life. My mom literally was told by the oncologist she beat cancer, and on her way down on the elevator to come across the street where nursing, the nursing school was to tell me, "We're going to have a great Christmas.

Let's go Christmas shopping," she threw a pulmonary embolism and died that night.

Terri: Oh, wow.

Diane: And, yeah,and that one experience, I felt abandoned by, big Irish family. I felt abandoned, alone. my dad wouldn't let us talk about grief, and then he got married within a year, and she had kids, and we weren't even allowed to talk about my mom.

So there was so I was, it just really messed me up. And then,15 years ago, I lost my oldest son. He was in the military and developed a serious pain condition. It's called the suicide disease. And, 15 years ago, he killed himself. And that is, that just threw me over the edge, because I, you know, I hear that I've, I suffer from complicated grief.

Well, that's the, medical system having to put a, a label on something. But complicated grief to me is you've loved hard and you loved long and you loved unconditionally, and a part of you is gone with that person. And so I know about anticipatory grief. Didn't know what it was when I was young, and I see it played out every day, when I work with caregivers.

I'd like to start by how do you explain anticipatory grief to a caregiver who says, "I don't understand why I'm grieving or why I feel sad. My loved one is still here"?

Terri: Yeah. and that's a really common thing. And really, I think the place to start with that is to help others understand that grief begins the moment something changes.

Grief is not something that we feel just after we suffer the physical loss of someone or the death of someone. It really, when your loved one receives a diagnosis or when they're have their first significant decline we start to feel... That those feelings that you get where you feel like, sad because, you're missing out on, you're missing the life you used to have.

You're looking at, what's before you, and the dreams that are not gonna come to fruition any longer. It's all of those things. You we grieve more than just death, is

Diane: Yes

Terri: is basically what it is. We grieve those relationships that are now changing. Yeah. the plans that we had together, the version of the person you love that they were before they got sick.

Because

Diane: Yeah

Terri: illness, especially terminal illness, it doesn't just change people physically. It changes them emotionally. And, you know, how can it not? When you receive a diagnosis like that, it changes you. And you also grieve the version of yourself before you became a caregiver, because that

Diane: Yes

changes us, too. I was a caregiver for my first husband for five and a half years. he just had sudden onset renal failure and went through two failed kidney transplants that

Diane: Oh

Terri: lasted about two weeks. and it was hard. It was hard watching him. He was on dialysis. Really had zero quality of life.

Dialysis was never, you see people go to dialysis and come back out, and they live a somewhat normal life. That was never Troy. It affected him in so many ways that, he was barely able to drive. He lost all of his muscle mass and strength. He had rigors in all of his extremities all of the time.

He was constantly getting infections in his port. Blood pressure would drop at the end of every dialysis appointment. It was just nonstop driving back and forth through the hospital, it seemed like for five and a half years. So it's a hard role, and I changed. I wasn't the same person. I wasn't as happy-go-lucky.

Diane: Yes

Terri: and I can remember being, for lack of a better word, pissed off on things like our anniversary when and it sounds selfish, and it probably is a little selfish, but I wanted to go out to dinner and celebrate like we'd always celebrated before. And you couldn't do that anymore.

Diane: Yeah.

Terri: So it's all of those things That's what anticipatory grief is.

And because, people don't recognize it, we don't recognize that as being grief, we don't know what it is so we never name it. And you can't process it and deal with it and talk about it until you know what it is, and you can you know, put a name on it. and a lot of times I've had people say, "But I feel like if I'm, having anticipatory grief, that means I've given up on my loved one, I'm already grieving their death."

And it's like, no, that's not what it is.

Diane: No, thank you.

Terri: That's not what it is. Yes. Yeah. Yeah, it doesn't mean you've given up on hope. You still hope for the best.

Diane: Yeah.

Terri: But you can grieve and hope at the same time. Grief doesn't cancel out hope. It doesn't cancel out joy. They can live side by side, and that's such an important lesson for people in a caregiving role to understand.

It's okay to still feel joy and still carry that antis- anticipatory grief, with you. So that's that's really the best way I know how to explain it to someone, so that they can try to understand what they're carrying, name it, and then be able to process it.

Diane: For me, when I was a teenager and I was caring for my mom, we weren't allowed to talk about her cancer.

My dad, you know, he... Those are Boomer... I'm a Boomer, but my dad's generation, they were like, "You just don't talk about anything," and then it doesn't exist, I guess. I don't know. But, I felt anger towards my mom, and I felt ashamed because I felt anger. Like, why is she sick? Why isn't she...

Why am I having to take care of the kids instead of... Because I had three siblings. as the oldest, I was, helped take care of them. And, it really, it really took a long time to overcome my and forgive myself for those feelings of just the loss of the relationship that I had with my mom.

And

Terri: Sure

Diane: I still, struggle with that sometimes. It's 50 years later. 54 years later, actually. And I know with my son, I just felt so bad because he was this vibrant, young, intel. He was a Korean linguist. he was an athlete. He was so many things, and this injury changed him forever. It's, reflex sympathetic dystrophy or chronic regional pain syndrome.

And it's a severe i- debilitating pain condition, and it can be set off by something as small as a breeze that changes the temperature on his skin somewhere.

Terri: Oh

Diane: Anyway, it was... I had a really hard time. Grieving. I was grieving the loss of my vibrant son who became overweight and, angry because he had lost his, he's lost his, ability to be independent.

He's lost his ability to do so many things. So, I've lived it, and that's why I think so many that's why I thought this was a, a really good podcast to do because you are bringing up topics that are really hard that nobody, or not many really, talk about.

Terri: Yeah.

Diane: You know, caregivers, they feel love.

They can feel resentment, sadness, anger, fear, and exhaustion all at once.

Terri: Yeah.

Diane: How can they begin to accept those mixed feelings without feeling shame? That's the hard one.

Terri: Yeah.

And I feel like it starts with just, like, what we just started a few minutes ago with recognizing. First you have to recognize what you're feeling and understand what it is, and anticipatory grief has so many different faces.

It can look so many different ways. And it doesn't look like what we expect. And I feel like having these conversations is where it all starts, and then having the, the caregiver actually have a conversation and talk about what they're feeling. Because when we carry it alone in ourselves, in our head, we can tell ourselves all kinds of stories, like we should be embarrassed, we should feel ashamed.

Diane: Yeah. Yeah.

Terri: But when we actually have a safe space where we can talk about it out loud it just changes things. It helps you to get it out. And then when you have someone who says, "You know what? That's perfectly normal." But when you're sitting with yourself and with your own thoughts, because it can look like sadness

Diane: Yeah

Terri: And that's a normal thing. That's what people expect. But it can also look like anxiety. it can look like fear. You can be laying awake at 2:00 in the morning with different scenarios running through your head. You can become angry. I understand that very much and as you just described with your son, you can be angry at the illness itself.

Diane: Yes.

Terri: Angry at the situation that you suddenly find yourself in, and sometimes even angry at the person you love. I experience that myself. Like, sometimes

Diane: Yeah, with my mom

Terri: Yeah. Yeah. You just, you don't think about it rationally sometimes, and that's okay 'cause that's part of the process.

It's,

Diane: Yeah

Terri: a normal part of the process to be angry at everything. But the first step in, in processing that and working through it is to be able to talk about it, to get it out of here, and writing about it, you know journaling about your feelings. But having a sounding board and having conversations like these where you hear someone else say that they went through the same thing, because the reason we don't talk about it is we're ashamed because we think, "I'm the only person who feels this way.

I'm the only person. How can I ever be angry at my loved one who's ill?" But when we hear someone else say That they also feel anger.

Diane: Yes.

Terri: It helps us not feel so alone and isolated in what we're experiencing. And that's why I feel like there's so much beauty in community where you bring together caregivers in a community space, whether it be virtual or in person. I feel like it's so important to, to bring them together so that they can share experiences, so they can see they're not the only one that's going through it. and it, you learn so many things about it. You learn exhaustion. I mean just think about the exhaustion, not just the physical exhaustion, but that deep exhaustion that even going to sleep doesn't fix.

Diane: Yes.

Terri: That, just all of the guilt, every... and there's still love in there. So you have all this stuff mixed up together, and the key is just letting them know by having conversations and talking about it that they're not alone. They're not the only one. It's a normal experience. But I think having a podcast like yours and having these conversations helps to normalize those things so that it can reach the right person, and they can understand that, okay, I don't need to feel bad.

This is a normal feeling, and it's okay to feel this way. Because, you know, it comes down to showing yourself compassion. My life has changed in a big way, and one of the things that I like to do sometimes is flip the script with my clients and say, "What would you do if you were sitting here with your best friend right now, and she's taking care of her loved one, and she's telling you all the same things that you just told me?

What would you say to her?" And you're usually gonna show her compassion. You're usually gonna give her grace. You're gonna tell her to be gentle with herself. You're gonna tell her to give herself space to grieve, and reassure her that what she's feeling is normal. How about turn that on yourself?

Why don't you show yourself that same compassion, and show yourself that, a little grace and say, "You know what? I'm going through a lot. My life has changed completely, and it's okay that I have these thoughts sometimes. it's okay to feel these different feelings."

Diane: You talk about having a place to go.

And I love that because my experience with both, with caregiving for my mother and, my son, is people avoid you. They don't talk to you the way they did. They... And you know, when I was young, I didn't know Nobody reached out to help me in my mom's family or my dad's family. They were all busy with their own lives, and I, here I was in high school dealing with three kids, my siblings and my mom. And it was, I know I grieved a lot. I didn't know then, but what I've learned is even after somebody dies, people avoid you. They don't talk to you. And I've even had people say to me, I can't believe you're still dealing with that at, after so long." It's just like they are so insensitive.

Terri: Yeah.

Diane: So I really like that you talk about, the, us having a place to go to talk about this because we all have guilt. We all have shame, surrounded, surrounding us as we're dealing with this. And those are unnecessary emotions that we carry that need to be negated and gotten rid of. Yeah. So I love that you offer a way for us to talk.

How does the anticipatory grief affect the nervous system and the body, not just the emotions?

Terri: Well, it's just like, it's grief, just like regular grief. It's the same way. When we are confronted with any type of grief, anticipatory grief included, it causes our nervous system to shift into fight or flight, and our heart, you know, our heart starts racing.

Your stomach can hurt. it causes real physical change in you. If you... there are a lot of devices out there, tools that you can use to measure, your heart coherence. That's why I'm a big fan of heart math techniques, because they really show how intentional focused breathing- Like slowing your breath down, taking deeper breaths, and focusing your attention in the area of your heart can really change and bring you back to a sense of calm, bring you back to a sense of peace.

Because that anticipatory grief, that's why people say, it's just... They just think it's an emotional thing. It's just making you sad. Like when you say, "I have no appetite," or, "My stomach hurts," or, "I feel fatigued," or, "I have a headache," or these... Or, "Something in my body is hurting," we carry that grief in our body.

And when it affects our nervous system, and it does affect your nervous system, then everything goes haywire. Just, think about anything else in your life that causes you to go into fight or flight. When you feel anxiety or you feel fear, you feel deep sadness, it causes real physical side effects.

You feel it in your body, and that's a part of the anticipatory grief. So having little tools like, heart-focused breathing. a lot of people find things just like going outside and putting your feet on the ground or working in a garden, having your hands in the dirt. Any type of grounding techniques, something that brings you back to the present and gives you something else to focus on outside of that anticipatory grief or the, the trigger that's causing it in the moment or causing your nervous system to go out of whack.

Any type of... It's... And it can be little small grounding techniques. I have one I love to do. I don't like elevators, I do this little thing. I touch my fingers to my thumb and I say, "Peace begins with me. Peace begins with me." I do that quietly to myself.

When my grief is overwhelming me, I'll just...

I close my eyes and I just go through it by myself, and it just take... causes you to take your focus off of what you were focused on. I slow down my breathing, and that regulates my nervous system again and helps me get back to a place of calm and peace. So sometimes it's just having those little, little things that can, bring you back to the present moment.

Diane: That's a beautiful technique.

It's easy to do, and you can do it out in public quietly within your head

Terri: Yeah

Diane: to maintain your composure. I love that. I really do. That's a beautiful technique that, it's a great tip,

Terri: Yeah

Diane: For our listeners

Terri: Yeah, it's one I use all the time. I share it with all of my clients because it is so simple, and no one has to know.

Nobody sees me doing it in an elevator but I'm do- you can guarantee I'm doing it every time. And if I'm out at... I still, 12 years later, we can be in a restaurant full of people and a, a song can come on the radio or I can see a person who something reminds me of my son or something, and I can feel myself starting to well up.

And it, and sometimes I do let my tears fall, but I'm not... I learned how to use things like that and my heart focus breathing to kinda temper my nervous system and bring me back to calm. And then when I'm alone or by myself, that's when I let myself fall apart. But I'll do things like I'll be under the table doing this When I need to, remind myself or get myself

Diane: Yes

Terri: back in a state of calm and not in panic or fear or anxiety mode. So yeah, there, and there's a lot of things. Not everything resonates with everyone. So there's a lot of different things that you can do.

Diane: Absolutely. I was walking on... I live in Myrtle Beach, and I'm walking on the beach in Myrtle Beach State Park, and this young man on a bike comes up to me and says, "Hey, can you take a picture of me with the surf, and the pier behind me?"

And I said, "Sure." He goes, "I am riding for, vet suicide prevention. And it was my son's birthday."

Terri: Wow.

Diane: "And he had passed." And this young man, he said, when he said that, I gasped because I was... And he tells me he had a friend who completed suicide that was a vet as well. And we both started crying right there.

And that was like 10 years after Jeff had passed. But even now I have moments where that happens, and I love that you have provided a response. Now, of course, that day, that's a message for me from Jeff or God or whoever you want to believe or not believe. Maybe I'm just a cuckoo bird. But it was too much of a coincidence that both this and, this young man and I met on a beach.

He's not even from Myrtle Beach. you know, I live here now. But I was from Ohio and Pennsylvania. It just, it's just moments like that will I've had that my whole life, those types of things with my mom and stuff as well. So it's really

Terri: Yeah

Diane: hard. And, I want to talk to you about role, what role does identity loss play in caregiver grief?

You were a spouse that became more like a patient, or a caregiver to your loved one, or, and me with an adult child. and I did not become my son's decision maker, but I wanted to. I had to keep my mouth shut and behave, and that was really hard. But can you tell us how that role identity plays into grief?

Terri: Yeah, and that's often one of the most common, pieces to anticipatory grief in the caregiving role. We start to grieve our own identity or the person that we were before caregiving became our life and became our primary role. The things that we used to do, the way that we used to exist in the world, it doesn't, it's not there anymore.

It changes because caregiving changes a person. We also grieve, just our freedom.

Diane: Yes.

Terri: Think about everything that you now have to do as a caregiver. So you used to be able to make spontaneous plans if you wanted to.

Diane: Yes.

Terri: You could put yourself first if you wanted to. Go get a massage, go get your hair done, But you can't do that anymore because someone's constantly needing you, or you have to find someone to come and step into that role for you oftentimes.

So that is, that's one of the most common parts of grieving. And there again, it's just about understanding that, normalizing it helping that person see that this is a natural part of anticipatory grief because caregiving changes us, and that change really deserves to be acknowledged. and that's why I feel like it's so important to be able to name it.

Because when we don't acknowledge those things, and then we just sit with the guilt, and we carry the shame. 'Cause we still have those thoughts in our head, but we feel like Yeah ... we're supposed to be embarrassed about them, and we just keep pushing through.

Diane: Yeah.

Terri: And that's when, you know, you hear things like the complicated grief,

Diane: Yeah

Terri: is really because... Really to me, that just means you had grief that you didn't address. it,

Diane: Yes. And, and Exactly

Terri: that's why it's so important that we have these conversations like this.

Diane: Yeah.

Terri: And it become, not it's just, it's real, and it's so common, but we don't hear about it.

Diane: Yeah.

Terri: Our culture has a really specific script for what grief and death are.

Diane: Yeah.

Terri: And so when someone dies, people bring food. They offer condolences.

Diane: Yeah.

Terri: You have a funeral. There's like a recognized period of mourning. You get, three days off from work if you're lucky. But there's no script, there's no real commonality or common things that we do before the death happens.

And

Diane: Exactly

Terri: you see a lot of times, everyone's checking in on the patient, the person that's sick.

Diane: Yes.

Terri: And we can also feel very selfish in feeling like, "Hey, what about me? I'm over here. How come nobody's" Yes ... "checking on me?" But

Diane: Yeah

Terri: that's normal. Yeah, I think we deserve, some attention,

Diane: Yeah

Terri: 'cause what we're receiving is that, and from our loved ones, from well meaning people friends and our family, the people who come to visit our loved ones, and they, you know, they're thinking, "What, but the person is still here, so you're not grieving them." Or they tell you things like, "Oh, you have to stay strong for them.

You should be grateful for every day." Yes.

Diane: That's what I used to hear.

Terri: Yeah.

Diane: It's like

Terri: And I don't think people are, they're not trying to be cruel.

No. But what it really says is your grief isn't recognized

Diane: Yes

Terri: or your grief isn't welcome here. Yeah. And so caregivers learn to grieve alone.

You know, we grieve in the car. All those idle times, brushing your teeth, in the shower, at 3:00 in the morning when our patient is asleep, then we have a little bit of time to actually grieve. But that minimizes the pain that we're going through, and I feel like it needs to have a light shined on it.

We need to draw attention to the fact that, caregiving is a hard role. It's a tough place to be, especially when it's, something where you're taking care of someone who had a sudden terminal illness diagnosis and a sudden decline and your life just changes abruptly overnight.

Diane: We don't recognize that. And your role changes in

Terri: Yeah

your role, whether you, many spouses have to become caregivers and, they're no longer just friends and lovers. that, that's a hard role for people. And then the daughter that's caring for the mother or the father that, you know, she tries to be the parent of her parent.

And, that's a role that she neither wants, or sometimes has a reluctance to do, which she, you don't want to parent your parent, but sometimes you have to, nudge them to take their medicines or nudge them to, get to bed or whatever, or not overdo it. Or on the other hand, you need to nudge them to get active and do more. So

Terri: Yeah

Diane: and you know, you hate to be put in a role where you're telling them what to do.

Terri: Oh, sure. Yeah. Yeah. Yeah. But and a lot of times I feel like there's a lot of beauty and comfort that can be found if we have these conversations with our loved one who we're caregiving for because their going through similar emotions. They're grieving the loss of the life that they were living.

Diane: Yes. Yeah.

Terri: A lot of times they feel like a burden. They feel, like they don't like this, especially a proud man is not loving that his wife is now bathing him or changing his diaper, or he can't do things around the house.

I mean

Diane: Yeah

Terri: but you have two people in the same room who love each other, both going through grief in their own way, but nobody's talking about it. Yes. We're not sharing that experience with each other. And when we can be open to that and understand that we're both feeling that and start to talk about it, it can lead to a much deeper connection. And, because a lot of times the, the, our loved one, I know in my husband's case, sometimes he became angry. Oh, yeah. Sometimes he was not the easiest patient to deal with. And I had to stop and recognize okay, just imagine what he's going through.

Diane: Yeah.

Terri: and then, it gives you a level of empathy, but it, that's why it just helps to have an open line of communication and to be able to talk about that, and for them to be able to say, "I feel like a burden," or, "I'm angry" "that I can't do the same things anymore."

Diane: Yeah. And, many caregivers do get the brunt of the anger and rage, and the loss of independence and having to depend on people is being taken out on them by their loved one that they're caring for. I see it all the time. And, they're, you know, they'll be nice to other people, and then they'll be trashy to you, and it's because they know you're gonna take care of them and they're gonna you're gonna keep coming back. And it's, they have to have a way to express it, and it's because we don't talk about it and we don't address it that this anger and rage and, comes out.

It happens

Terri: Yeah

Diane: all the time. And I think that, being able to have those conversations, you know, it's a hard conversation to have, but there just has to be a time for it, and we don't make time for it because we also fear what we're gonna hear or what we're going to say. And,

Terri: Yeah

Diane: that's why it's so important for someone like you, Terri, to, be with somebody. You talk about sitting with grief instead of trying to fix it or rush through it. What does that mean?

Terri: That really just means being present, listening. I ask a lot of open ended questions. And when I'm training other people to do this work that's one of the biggest lessons that I teach them because, we talk about in society you hear uncomfortable silence, but silence does not have to be uncomfortable. In this situation, silence can be absolutely beautiful because what I have found is that those who are suffering from anticipatory grief. They want to, whether they recognize it or not, need to talk about what they're carrying.

Diane: Yeah.

Terri: And so holding space means just sitting with them, being present, asking questions about the, tell me what this feels like for you." You, listening when they talk because if you're just silent and you listen instead of... A lot of times we'll ask a question, and when an answer doesn't come right away

Diane: That's when we feel uncomfortable. That's when we start to give little, well, could it be this?" Or, "Are you feeling this?" We start trying to offer suggestions or... But if we're just silent

Terri: and just sit with it. Most of the time it encourages them to speak, and they'll start to talk. And when you just sit and listen, not rush to, "Oh, let's do this.

This will make you happy," or, let me go make you your favorite meal. That will, you know, put a smile on your face."

Diane: Yeah.

Terri: "Let me have Bob come over and sit with you. That will make you happy." That's what I look at as, as trying to fix them. They don't... What they need is not to be fixed.

Diane: Yes

Terri: Sometimes we're asking for advice. Most of the time in grief, we're not asking for advice. We're not asking you to give us your opinion. We just want somebody to listen. And when I listen, that's when I start to hear the story that's in their head. I start to hear the story that, for a caregiver, for instance, when I allow them to talk, when I say, "Tell me about a day in your life.

What does that look like in your caregiving role? what does that day look like?" They'll start talking, and I'll hear them say things about, you know, and I was mad. I got mad because, I just wanna have a moment's peace. I just wanna do..." Whatever it is, and I take note of that, and then I bring that up and say, "Well, I imagine that's really hard."

Just reiterate back to them so they know that I understood, that I heard them. And that, that is exactly what holding space is just letting them talk, letting them get everything that's in their heart and in their head, letting them get it out, and not offering to try to fix it, not offering advice, not trying to rush them past it, not saying, "Oh, but, let's focus on the here and now because they're still here now,

We should be happy because they're still here." Yeah. It's not any... it's not about that. It's about letting them have the space to say everything that's in their heart. And I tell people all the time, too, "If you want, if you need to fall apart, if you feel like you just need to cry, this is a safe space.

Fall apart." Yeah. "Do it," And when you're on your own, give yourself... Like, I set time sometimes when things are rough or, give myself five minute, "Okay, Terri, you got five minutes," or, "You have 10 minutes, get it out and have a good cry." Yeah. Because it's like, it's unburdening.

It's like

Diane: Yes ...

Terri: such an emotional release to be able to do that. So

Diane: Yes

Terri: that's really, that's what holding space means to me.

Diane: That's beautiful. I like that. Nobody's ever taken that approach with me when I was going through my anticipatory grief or, the grief after my loved ones died. So I really like this process.

What, Terri, what are some practical tools caregivers can use when grief comes in waves during the day while they still have care tasks to complete?

Terri: Well, there's a lot of things, and it really would depend on, I usually will start with asking them, "What are some of the things that you used to do that you enjoyed doing, things that brought you peace?" And it's really about, because sometimes caregiving is a full-time role. you're going all day long. You're on your feet, you know, changing bags and cleaning up and, all of those things. So it's about finding small moments in your day, not planning a vacation.

It's just about finding, even if you can find 10 minutes to step outside and just feel the sun on your skin, to take a short little walk, have a cup of tea, have a cup of coffee, whatever it is that you enjoy. having a phone call with a friend, somebody that you can talk to, somebody that will hold space for you for a few minutes.

Any type of small moments of restoration that you can find will make a huge difference in what you're going through. I think journaling is very underrated because I feel like it's a, not only a great tool to, unburden ourselves and get a lot of the things we're carrying in our head out which helps with overwhelm, but then it's a great tool for reflection. It's, it can serve as a really good tool to go back and look at a later point in time to see where you were versus where you are, to see what your journey looked like. If it's someone who likes to write or is open to it, I'll recommend, that they do that.

Another thing is really naming what they're going through out loud by saying, quietly to themselves, looking in the mirror and saying, "I'm grieving. What I'm experiencing is grief. I'm going through a really hard situation, and it's okay to feel the way I feel." There's something about just saying it out loud or writing it down, but the, really saying it out loud, it just, it takes some of the power away from the grief. And, and it does it's like I'm taking back my power, I'm showing myself compassion, I'm showing myself grace, and I'm telling myself it's okay to have this moment. It's okay to take this little bit of time to, because you're really no good to anyone else if you're probably walking around angry, Or sometimes we can get an attitude because we don't have any outlet for what we're feeling.

So

Diane: Yeah

Terri: wherever you can find those small moments, figure out what it is that feeds your soul. A bubble bath, it can be anything. It doesn't have to be anything major. but just something small, whatever it is, and it really just depends on the person, but those are just a few of the ideas of things that they can do.

Diane: Terri, you've provided some great information that I could have benefited from decades ago. So for the family caregiver listening today, or a senior who's, who is well but may have, a decline in the future, but the family caregiver listening today who feels emotionally exhausted and alone, what is the one message you most want them to hear?

Terri: I really want them to hear that they don't have to carry it alone, because that is the hardest part. One of the heaviest weights of being a caregiver is carrying that grief and isolation and feeling like no one truly understands you and feeling like you have to be the strong one for everyone else. So asking for support, reaching out for support, whether it be just from a trusted friend or professional, however you get that support, it's not a weakness.

I think it's really brave to do that. and it's a really wise thing to do. And there's a lot, I think there's, there are caregiver support groups, out online

Diane: Yeah

Terri: in different communities, host events, specific for caregivers. I would just say you don't have to carry this alone.

You're not intended to carry it alone. It's not fair to bear the weight of everything you're going through alone, and it's okay to lean on others for support.

Diane: Beautifully said. How do my, listeners reach out and find you?

Terri: I am on social media. Facebook is my primary social media platform. I actually, pretty much talk about grief every day on my, and it's just under Terri Lynn Chaplin.

I talk about it every day. I ask questions, I share videos. I share, educational information. I give, my followers an opportunity to share their grief experience. I respond personally. It's just me. I respond personally to every single comment, with heart. and then I also have a website.

It's, myhealingheartscommunity.com, and I do have some free resources on there. I do have a free resource specifically for caregivers experiencing anticipatory grief, that you're welcome to go in and download. Yeah. And, if you are ever interested in, having someone sit with you in grief and you're looking for a grief companion, you can also schedule a no pressure chat with me just to see if it would be the right fit.

I know I don't resonate with everyone. so I encourage you, if it's something you're curious about or interested to see if it's something that would help you, reach out to me. I'd love to talk to you about it. Look at, check your local area too for caregiver support groups because, I think you might be surprised at how many are out there and available, if you just look

Diane: Well said.

And I will say that, grief counseling or, knowing about anticipatory grief is not often discussed in these caregiving groups unless somebody has, professionals running it and they've experienced them their self, or they've become aware of it to teach. Because I've been in a lot of groups, and I, have seen that's a big missing piece.

I love what you do. I love that, you're making people aware of this, at a time when we have the most seniors in the world that we've ever had and, it's growing as we the baby boomers are going, are hitting 80. The oldest of us are hitting 80 in a few years, and the youngest are retiring.

So we've got a lot of anticipatory grief going to occur. Yeah. And I think you're going to be able to help many prepare for that. So thank you so much.

Terri: Oh, you're so welcome. Thank you. I appreciate the opportunity to come on and talk. It's always, it just, it, this feeds my soul. So thank you for inviting me.

Diane: Thanks. It feeds my soul to make people

Terri: Yeah

Diane: aware of your services. to my family caregivers out there, you are the most important part of the caregiving equation. Without you, it all falls apart. So please learn to be gentle with yourself. Practice self-care every day because you are worth it.