Melanie Cole, MS (Host): Welcome to the Live Greater podcast series, information for a healthier you from the University of Maryland Medical System. I'm Melanie Cole. And today, we're highlighting anticipatory grief, grieving before a loss. Joining me is Dr. Leah Couture. She's a palliative and hospice care physician at UM St. Joseph Medical Center.

Dr. Couture, thank you so much for joining us today. So, tell us what is anticipatory grief. And how is it different than the grief that we experience when we actually lose someone?

Leah Couture, MD: Thank you for having me. I think this is a really important topic, because you're right, it's a little bit confusing to feel like you might grieve a loved one before they're gone. Anticipatory grief is really about feeling that sense of sadness or loss maybe when a loved one is still with us. And it could be because you're picturing what life will be like after that loss.

But it can also be that you're grieving parts of that relationship or that connection that you no longer have due to the illness, or maybe due to the change in your relationship as you're becoming a caregiver for someone who is going through a serious illness or through the end of their life. That sense of connection with a romantic partner might change as you become their caregiver, or the relationship you have with a parent changes as you become their caregiver. And so, you can be grieving different aspects of a relationship that you've had over many years, even before a loved one passes.

Melanie Cole, MS: That's so interesting. We don't often think about it, but I imagine it's pretty common. Tell us a little bit about the losses. I'd like you to expand because you did just mention some of them. But while their family member is alive, is this a pretty common thing to grieve all of those things you just mentioned?

Leah Couture, MD: I definitely think it's a common thing, but maybe not a recognized thing or a thing people feel comfortable expressing. I think many of us who have had a loved one go through an illness or having a loved one who has some decline before they pass, we find that the change in how we relate to them or in the ways that we can rely or lean on them, we are losing parts of those pieces of our relationship before they die.

And sometimes that feeling of sadness, we don't acknowledge it because we want to try to celebrate the time we still have with them, or maybe we even feel like we're not allowed to be sad since they're still here with us. And people around us want to be supportive and say, "Well, isn't it wonderful that you still have this time with them?" But the time doesn't maybe look like what it used to. and so, we are having this grief and maybe not having a good place to put it or a good way to express it.

Melanie Cole, MS: Well, you bring up such a good point because other people might say, "Well, aren't you feeling happy that you're with this person now, that they're there now?" But sometimes caregivers and loved ones can feel ashamed that they are feeling this kind of grief and that they're grieving whatever parts of their relationship that they've lost while caregiving someone who's going through a terminal illness. Tell us a little bit about why they feel ashamed about this.

Leah Couture, MD: Yeah. I think with the best of intentions, people around us want to try to find a positive in difficult times. And so, while they're trying to be supportive friends for a caregiver, they might say, "Well, at least you still have X," or "At least your mother is still there and you're fortunate enough to take care of her."

And while that is an attempt at a supportive statement, it kind of makes a caregiver feel maybe a sense of guilt or a sense that they're not allowed to have that space for grief. I think we also reflect on ourselves too, that we don't want to seem sad or burden our loved one who has a terminal illness with seeing that we are having a hard time, so we want to be strong for them, right?

We want to be that positive sense of support for them. And sometimes that also means feeling like you can't have your own feelings about what's going on, or not having a space where you can open up and be frank about how hard it might be to be a caregiver or to see your loved one go through this kind of process at the end of their life.

Melanie Cole, MS: It can be such a difficult time. And Dr. Couture, what are some signs that someone might be experiencing anticipatory grief and maybe they're not even recognizing it as that? They're just thinking that they're feeling sad, this person is dying, whatever it is. What are some of those signs we should be looking for?

Leah Couture, MD: So as you mentioned, like some of it can be that very typical like sadness where you just find that you're more tearful at times you wouldn't expect to be. But it can also be feelings that you wouldn't relate to grief. Like, sometimes people will feel anger or have a shorter temper, easily frustrated because they're not able to recognize that grief.

And without having somewhere for that to go, it sometimes just winds up causing more irritability. Sometimes people also feel maybe a sense of isolation from their loved one, or a sense of lack of connection and detachment, almost as a way to kind of protect themselves or their loved one from that grief they're feeling.

Melanie Cole, MS: Do you have some advice for coping with this type of anticipatory grief? Because, like you say, it's not something everybody always recognizes as what it is, and some advice for still being present as people are trying to do that to us and say, you know, "Gosh, you should just feel grateful that they're still with us," or, you know, all the things you've mentioned. How can we cope with that feeling and try and bring back that positive feeling so that we do use gratitude for the time that we have left?

Leah Couture, MD: I think because we want to have those times where we can really be in that moment and be present and be grateful for what we have, we also have to give ourselves time to feel the other things. Because if you just bottle them up, then you're not going to let yourself feel any of the feelings. And so, finding a safe space, whether it's another family member or friend you can open up to, maybe it's your primary care provider or your spiritual leader, someone where you can open up on the feelings that are hard to express or hard to allow yourself to sense when you're around your loved one that you're caring for.

Once you let those out, it's easier to find those moments of joy in that relationship still. When we are really in that day-to-day caregiving, sometimes there's also that sense of exhaustion, so making sure you're doing some self-care taking, which I know is way easier to say than to do. But even if you have a friend, a neighbor, another family member who can sit with your loved one for a couple hours so that you can go for a walk or go to your own doctor's appointments, just have a little bit of time so that you're able to be the rest of the whole person you are outside of that caregiving role will then allow you to be more fully present when you're back with your loved one so that you can find those moments of connection.

Maybe, you know, if it's a loved one who's going through dementia, you're able to identify those moments where they are more like themselves and able to remember things that have been important to both of you. And those can shine brighter when you have that extra breathing space where you've had a little time away to kind of relax and just be the rest of yourself outside of your caregiving role.

Melanie Cole, MS: That's so true. Caregiver burnout is really common, and it's very hard to care for someone going through these conditions. So, I'm so glad that you brought up self-care because I think that is really such an important message. And Dr. Couture, as we wrap up, when should someone seek additional support or counseling when they're experiencing this anticipatory grief? And, you know, where can they get some more help and resources?

Leah Couture, MD: The grieving process happens for everyone and it happens a little differently. But when you might need help are times where it really is impairing your ability to function day to day, or you're finding that you are really becoming detached or disconnected from your loved one in a way that's affecting your ability to spend that time with them, then I think it's reasonable to seek more help.

And you might do that through your primary care provider or maybe even the care team for your loved one so you know. I know as a palliative provider, we care for the whole person, and that means we also care for the people that are caregiving for them. We can help connect to resources.

You might reach out to your faith community and say, "You know, I need some more help. Is there a support group or something here?" And then, if it's, you know, a little harder to find someone in the immediate group around you, then there are organizations. The American Cancer Society has a whole caregiver's guide as well as caregiver support groups.

The Alzheimer's Society additionally has that for people who are caregiving for a loved one with dementia and Alzheimer's disease. And I think sometimes finding people who are in a similar situation also lets you navigate the trickier parts of that grieving process that's hard to talk about because these are people who are maybe walking a similar path and you can share some of that experience.

Melanie Cole, MS: Really great information, Dr. Couture. Thank you so much for joining us today and telling us about something we may not even realize is happening. So, this was such great information. Thank you again. And for more great health information, you can visit us at health.umms.org to get connected with one of our providers. You can also visit us on YouTube or your favorite podcast platform. I'm Melanie Cole. And thank you so much for listening to Live Greater, a health and wellness podcast brought to you by the University of Maryland Medical System. We look forward to you joining us again, and please share this on your social channels.