Exploring Anticipatory Grief as a Caregiver

Melissa Lunardini
Melissa Lunardini

Melissa Lunardini of Help Texts about experiencing anticipatory grief as a caregiver and tools to move through it.

Listen on:
Share this post

Podcast Transcript

April 14, 2023
Note: This transcript was computer generated and might contain errors.


Melissa Lunardini: Right. but then the other pervasiveness I would say, is that grieving children and teens are resilient And the reality is, is evidence for both. Just do not support either of those myths. Or societal misunderstandings.

Katie Wilkinson: Yeah, I think what you just said about a mental health diagnosis, you know not being for a life, A lifetime necessarily is probably very encouraging to people listening. and then, I guess my question about this myth, About grief not being disruptive on a societal level is like You know we have work gives you three to five days bereavement leave and you know there's not a lot of other policies or structures in place. I guess you know how can we on an individual level? Start to challenge this societal myth so that people so that it changes. Do you have any insight into that?

Melissa Lunardini: Yes. I mean the biggest way you know, we know that when it comes to policy change, it requires people putting their name on the line and actually advocating and signing documents and showing up and calling the representatives, which it sounds like, what is my one? Call going to do here, but people have made it so easy to participate. Now, sometimes you, you can just get a link right to your phone and then you click a few buttons and then your voice has been accounted for. And so I think Really, you know, finding the spaces where you can advocate and and help make a little change moving the needle, a little is better than no movement at all. And you know, I think that

Melissa Lunardini:  We just need to, you know come together as grievers. That are more grievers than there are non grievers at this point, right? And so a group of really loud people who want to make change can make change. When they're ready. But, you know, early on, in grief, it's a little hard to do anything but survive, so

Katie Wilkinson: It was just what to say. I think early on that can be, you know, that can be hard. You're like Yeah feel like you're drowning a little bit but I guess in this, sorry, I have a frog and I guess in the same vein about, you know, grief being disruptive and It is and you can't circumvent it. Like you're gonna go through it, however, you go through it and I think we talk a lot about like feeling your feelings and…

Melissa Lunardini:  Yes.

Katie Wilkinson: you know, And that kind of sucks. And can you talk about like why is it important to feel your feelings? And how do you actually do that? Like What does that mean to feel your feelings?

Melissa Lunardini: Yeah. well, I think the first thing that I always say is that to just Say that grief is feelings simplifies grief to. It's like most basic form, right? We know that it's so much more than just feelings. Grief is so much more than feelings. It's, you know, spiritual questions, and physical, manifestations, and exhaustion, and brain fog. And you know, Problem solving and all sorts of things, right? Emotions just happen to be.

Why it’s important to feel your grief

Melissa Lunardini:  Pervasive because they're often in conflict that you're often experiencing them in large ways or in small ways and some are very easy to understand and some are very complex and so they often take up a lot of space. In in grief. So they get kind of a lot of the attention there, but But because we love using analogies here, I will use an analogy by here. I mean in the grief space because grief is such an enigma. It's so hard to articulate. So we tend to use an allergies to help make sense of something that is so hard to understand, but when it comes to this idea of why it's so important to like lean into feelings but I'm going to broaden it and say lean into your grief, the all-encompetency of it, right? Not sure if anybody anybody listening in has seen the viral video going around.

Melissa Lunardini:  and it's really talking about the difference between how cows and buffaloes handle storms, and the video goes on to talk about like when a cow senses, a storm coming, It's first thought is to head the opposite direction, and try to outrun the storm. And by doing so this cow gets exhausted and it maximizes the amount of pain and time and frustration that it is experiencing from the storm and it never outruns the storm, right? Ultimately the storm catches up too. To the cow.


Melissa Lunardini:  The buffalo. On the other hand, though, turns into the storm and runs head, first into the storm and it minimizes the amount of pain time and frustration that it's in the storm. And when it's, when it comes out of the storm, it's able to resume. You know, grazing and going about its business. And I think grief is like that, right? We have choices. We can either choose to try to outrun grief. And get exhausted. And still never outrun grief, like it'll still catch up to us, but maybe perhaps by the time it does our resources are completely depleted or we can choose to be like a buffalo and head right into it. When grief comes, when our storm comes, we run right into it. You know, settle in handle the storm and then we're able to go about our daily lives afterwards.

Melissa Lunardini:  And the reason why I love that analogy is because the universal truth about grief is that it doesn't get ignored. You you know, it refuses to be ignored. So even when you think you're just connecting from it or you've avoided it, you've outpaced it, you're out running it. All it is doing is quietly rerouting itself. And looking for another pathway out to be acknowledged. So perhaps you're choosing not to acknowledge it mentally or emotionally. well, it's gonna find it's pathway physically then Or spiritually or perhaps you're going to withdraw from family and friends, it will find its way out. And so you know, it's really about You know, how much do you want to prolong the time and pain by outrunning it, or do you want to minimize it and just hit it head first.

Melissa Lunardini:  And that, that's what I that's what I I'm inclined to always lean in versus try to outpace.

Katie Wilkinson: Yeah. I mean, I love that analogy, and I think it's interesting because I think for many people who are, you know, risk adverse, or paint adverse, which I don't think is, like, uncommon for human beings. I think you, you look at the buffalo and you're like, you idiot, like that's why you're running into the storm, like that seems crazy. That was my initial reaction when you, you know, said the analogy. But I also, like you said about like, the storm still coming, like, it's gonna find you, it's gonna come out some way. And so it, you know, takes some level of bravery to head in head first.

Katie Wilkinson: I wrote down a question. I think it's probably changed a little bit just based off of what you've shared so far. But the question is, what are some tools people can use to move through anticipatory grief, and I think Maybe I'm curious about that. I think after someone dies people other people see that there's a marker that something has changed and so, Like it's like more. You're more loud to like more no signs of grief and this sort of thing.

Tools to manage anticipatory grief

Melissa Lunardini: Yeah, so um you know when I think about tools I think about like what are the things that I can use or implement in my life in order to help? Me manage this process, right? Because it is really about managing you. We're not we're not going to be able to avoid it, right? Or outrun it, right? So it's How can I manage this or make? This feel more manageable when things feel very unmanageable around me, right? So I would say, like, the first thing for me is, a tool that I would say, like,

Melissa Lunardini:  Coming to awareness. So and what I mean by that, what I mean by coming to awareness is the ability to acknowledge that, this new relationship will be formed that and this will this newly formed relationship that you're about to have as you caregiving for somebody else will be the last type of relationship that you have as they're physically here on the on this Earth. Right. And so so there's this becoming aware about how that makes you feel. About how you're going to choose to honor that knowing that you can't change it and how that might also make that person feel, right? So it's like a good example. Here is I worked with the A gentleman again and his wife had als and so he was a caregiver for a really long time. And what he said was is that Our relationship.


Melissa Lunardini:  Changed from a romantic relationship of husband and wife. To a very platonic relationship. And at the end of life, we were friends. We were not husband and wife and

Melissa Lunardini:  And so, a lot of his work had to come with, you know, grieving the fact that he had to let go of this romantic relationship and move into this. Very platonic non-romantic relationship over the years that he was caregiving and He chose to still honor his wife and his in his marriage, even though there was no intimacy or anything like that, right? And he chose to still be gentle and kind and loving and really treat her. Like he would want to be cared for himself and that's how he chose to honor that relationship and it worked for both of them. And then, you know, after he died, he was fully ready to

Melissa Lunardini:  Get into a romantic relationship, right? But but that point of coming to awareness that a relationship and new relationship will form in your caregiving journey and that's just part of the caregiving journey and the disease process, right? It just changes who a person is. So that's one tool. I would say is Just be open to being aware of all of the changes that will happen. And then honoring kind of those changes. I think the other thing that is really hard for people to do but it's a It's a muscle that we have to really exercise is remaining present. I think in the caregiving journey particularly and anticipatory grief. We want to think backwards and forward. We want to anticipate needs in the future but then we also want to try to make make meaning or make sense of why this is happening which is kind of this backwards thinking, right? But the sooner that you can get yourself to just remain in the present moment.

Melissa Lunardini:  I think. That is when you can be super intentional with your time, with the person who is dying and towards end of life, but then you can also then really do the work of your own grief process. Too, that's coming up for you. So being present is just it's a true gift. And tool that I think a lot of people really should consider two more tools. That I think are really important. The other one is to accept and ask for support. The reality is, is that often?

Melissa Lunardini:  We are terrible as caregivers for asking for support because there can be this like superhero complex. I think that we naturally adopt where we think that only, we can provide the best level of care to our person. And everything else is very substandard because we know them best. And and that, that may be true. However, caregiver burnout is a very real thing. It happens sooner than people think. Most caregivers aren't even aware that even their care starts to decline their ability to give care at the standard in which they hope to give care starts to decline over time as well. And you just have to reconcile in your own brain and heart that it's okay to allow other people to come in and offer care.

Melissa Lunardini:  So that you can get the rest and recharge that you need because for a lot of caregivers, it's a very long journey. And then the last thing, I'll say the last tool I'll say is have all the conversations that matter. and what I mean by that, is that You know, you want to be able to like tell them how meaningful they were to to you and all of that. But There are caregivers who have a very complicated relationship with the person that they're caring for and I want to shout them out for a second because when we talk about having all the conversations that matter, sometimes caregivers who are caring for somebody who has a cop and they have a complex relationship. One of the things that they'll probably want to have a conversation about is

Melissa Lunardini:  How their relationship wasn't that great or how they wish things could have been different and maybe they're expecting an apology of some sort. And although making amends and getting an apology is very beautiful. The one thing I will say is when you have a conversation that matters you cannot be wedded to the outcome and know that somebody has hurt you. It isn't a requirement in your healing to hear that apology from you from them, right? You're in charge of your own healing. And so when we talk about having conversations that matter, I think it's really important that you can have a conversation with them around wishing that things were different, but also finding gratitude that you're able to be in a space or in this moment with them, even if it's brief and fleeting that


Melissa Lunardini:  Potentially could have like moments of peace and connectedness even without an apology. and so, I say that because I think of even my own family dynamics, where apologies were needed, They weren't able to be verbally exchanged but know that, you know, it's not required. For your healing. So those would be the tools that I would I would say are really really important for care. Givers to think about and anticipatory. Kind of phase or end of life, caregiving, if you will.

Katie Wilkinson: Yeah, I mean those are all really beautiful and helpful. I think to my own experience as a caregiver and like the the changing relationship. You know, particularly resonated I am Learned that as we went but knowing it, you know, sort of sooner might have been helpful because it was confusing to go through. You know, to start. Parenting your parent or just experiencing, this this role change was interesting and then we just said about having conversations that matter and But not holding you tightly to the outcome. I you know, experience the same thing with my mom. We had a very complicated relationship. She's, you know, since passed and you know I never heard like I'm sorry and a big part of my healing journey was, you know, learning to forgive even though I don't get the other side of that. But everything you just said, I think was really beautiful and helpful to people that are You know, going through into the story or ambiguous. Grief. And

Katie Wilkinson:  I guess following up on that. Is. Less about the caregivers, but more about people that are sort of in the caregivers space. You know, how good other people talk to caregivers? about antisory grief about ambiguous, grief, and I think it can feel awkward, so like bring it up or ask someone how they're doing, you know, any like tips for

Katie Wilkinson: Of caregivers.

How to talk to someone dealing with anticipatory grief?

Melissa Lunardini: Yeah, I mean I think that anytime a hard conversation has to happen, I don't think that there's ever a perfect moment, right? And sometimes the moment is, when they're in your presence and then people and then you just you give them the chance to back out gracefully without any pressure, right? It's it's, you know, hey how have you been feeling lately? As you've kind of been in this world wind of caregiving and if they start to say Oh my gosh I'm just so exhausted this that or whatever. Then you take that as a door, opener willing to like discuss more about it, right? Or if they're like, I'd prefer to talk about anything about that. Then that's them kind of saying, like, Hey, I don't have a capacity emotionally to kind of go there with you right now. It's not that I won't ever but just right now that's not what I'm needing, right? And then our for us as supporters, right? You know, it's like how can I support you in what you need right now?

Melissa Lunardini:  Do you need a spa day? Do you need to go have lunch? Do you need to, you know? Have a little time for like a breather meditation. Can I go watch your, you know, person for an hour or two. So, that way, you have that, that time to yourself.

Melissa Lunardini:  Just really taking any time that you're engaging with them as an opportunity to open the door for a conversation and check the pulse, right? So, my short answer is there's never a good time. Just always take the opportunity when you get it.

Katie Wilkinson: Yeah, I think that's a helpful, reminder. I'd love to thank you so much for sharing. You know, so much information about grief and…

Melissa Lunardini: From.

Katie Wilkinson: tools to you. I think this has all been helpful. I think one tool in someone's toolkit might be help texts, I'm hoping to sort of shift the conversation a little bit. Can you tell us more about what is help texts and what's the mission over there?

Melissa Lunardini:  Sure. Absolutely love this product. I have to say, I When I heard about this, I was like hard. Yes, like hard. Yes. When it comes to being able to break down barriers that often come with caregiving, but also with accessing mental health and grief support in general, people don't have the time, the transportation, the resources, the trust, the whatever, the, there's a long wait list, whatever it is, whatever barrier it is. This literally cuts through everything because the support comes directly to you on your phone, right? And so the mission really have helped texts is to, you know, make receiving mental health and grief support, super accessible for people who need it for, as long as they need it. There's really no time and we think about You know.


Melissa Lunardini:  Equitable services, text is where it's at and and text has the capacity to provide quality care and support and it's provided in very bright like bite-sized practical pieces, which is so so huge for people who are saturated with making a lot of decisions with being overwhelmed with Not being able to engage emotionally, right in the moment in session, right? Like we've, we had a gentleman once, tell us that he loved receiving texts because he can go back to them when he was ready to deal with it. But if you paid for a therapy session, whether or not he was ready for it, it didn't really matter because he was on the clock, and he had to go there, even if you wasn't ready to, but texts for you convenience, right? Like you get to circle back when you're ready.

Melissa Lunardini:  And so, so really the mission is to just to make receiving support, various accessible and easy to receive for anybody and affordable.

Katie Wilkinson: And then correct me if I'm wrong here. I just want to make sure that people are understanding the product at sort of in its entirety. It's not I don't want to like name drop. It's not like online therapy. It's not going back and forth with a therapist in lifetime. It's getting text messages. To you in support of your grief experience. And And hopefully that's correct what I've just said. Can you talk a little bit about…

Melissa Lunardini: Yes.

Katie Wilkinson: how it's like personalized to someone or how this, you know, what are the pros and cons to using help texts in place of meeting? Someone in person or you know, other forms of mental health support

Melissa Lunardini:  Sure, sure. Yes, you are right? So, it's, it's asynchronous support, which means that it's one way. However, people do engage with the texts all the time. So they might, you know, talk to us on a regular basis. We have a team that really read that reads every single inbound and will respond as needed, but people who sign up are very informed, we remind them that it's one way. And so, in that case, it's not to a therapy, right? It's and that's somebody might consider that to be an actual con of the service, right? It's like a limitation of the service that they're really wanting to engage in back and forth. But really, our goal is to fill a big public health gap.

Melissa Lunardini:  And engaging in two way therapy, was a therapist, there's a cap to the amount of people that a therapist can see, right? But when support is delivered, one way, it actually opens up the availability to serve thousands and millions of people all at once. And so in that regard, it's like a public health model intervention tool, that's capable of supporting large, segments of the population, all at the same time and that's one of the pros of it as well. Right? It's, you know, we're able to serve large statements of the population, it's not invasive. You can choose when to read your texts. The texts are all predictable actionable bite-size. The rooted in evidence-based practices. They're inspired and written by like world-leading experts in caregiving burnout grief and loss trauma.

Melissa Lunardini:  We send tips to family and friends so each subscription that person can add into family and friends who want to help, but may not know how. And so we'll send them kind of practical ways to show up and offer support. Um and you know texts are there when other options are not so you know you might have a therapy session on a Tuesday and then not another one for a couple weeks later you might have a grief group on a Wednesday texts are there multiple times a week on weekends on days off on holidays just showing up and offering kind of a gentle presence.

Melissa Lunardini:  Yeah, it's one way. But the data we survey, a lot of people, I mean, we surveyed thousands of people who have utilized our services and the data that comes back is roughly about 95% of people find the texts helpful and supportive. And they say things like, You know, it feels very personalized and customized because we are using your name and your loved ones name. People can tell us as much information as they want, and the more information we get about them, the more curated the texts become for you. If they're not comfortable, they only have to share a little bit of information with us and they're still going to get really great content that will still resonate with their experience. Because we're really pulling from


Melissa Lunardini:  Universal or central themes that are really commonly experienced, and we never say, should or you you should do this or or anything like that. We always just say This may be helpful for you Perhaps consider this, or If this is true for you type of thing. Like they're very gentle in the way in their approach and are not labeling in any way. But really just Rooted in. Yeah, education and validation, and coping strategies all to help kind of normalize and validate the grief experience.

Katie Wilkinson: Yeah, I mean I love that I think you know there's I guess I, I asked that question. I wanted to clarify some people understand what the product is, but I really think that this, you know, the way you guys are giving like, practical. I love this focus on practicality and bite-sized. Personalized content to people. And there's a really valuable tool for people to have access to that's very different from therapy or, you know, support group or or any of the above.

Melissa Lunardini: Can I quickly talk about the caregiving product? So our caregiver product I'm like in love with. because not only are we addressing you know, anticipatory grief but patient care and advocacy and you know all of the things that you'll really you know experience but we have the option that when when you're informed that your person is going into the active dying stage, which could be roughly anywhere, you know, 14 days out or so from their death They can let us know. And then we have we've worked with like people like Barbara, Carnes and Gabby Jimenez. And you know, we've got content from BJ Miller and we are really then

Melissa Lunardini:  Texting them daily with. The things that matter most in the last 14 days, after leading up to a death to really be this steady support with really beautiful gentle, texts that speak to some of the really big major decisions that families have to make during those last few days of life. And so it it becomes just like the best. Companion. If you will, when you feel like your caregiving alone and isolation So I love that. I love that part of the product and it's really going to be Just powerful and helpful for many, many people, I believe.

Katie Wilkinson: Yeah, I love that. Thank you for highlighting that. And if people want to use help texts like how do they, how do they get started?

Melissa Lunardini:  Sure. So there's a couple of ways, you know? Ideally in our and in our ideal world, we would have businesses paid for this and then make it free and available to people. So they don't have to pay for it themselves. And that's what we're working on. Always, so one mechanism is, if you are, if you're an organization who supports caregivers and, or People with DI terminal diagnosis. For example, you can purchase subscriptions in bulk, and then make them free and available to people who need it. Most who may also be resource depleted and could find a lot of value in something like this. But the other way is, you can just buy a subscription as a gift for somebody for $99 through our website, which is help text calm.

Melissa Lunardini:  And or you can purchase it for yourself for $99 through our website. There's a variety of ways. But when you think about like, intentional gift, giving and showing up in Way gifting somebody a product like this for $99. It is literally cheaper than, you know, a grubhub mill or, you know, buying flowers, but it's showing up in a much fuller, and robust way, and you become part of their support team too. So it just becomes this very beautiful intentional and meaningful gift to offer somebody when when you know that they're going through something that is really is, like all consuming.

Melissa Lunardini: Hard. I've never met a kid…

Katie Wilkinson: yeah, I love Yeah,…

Melissa Lunardini: who was like, this is easy.

Katie Wilkinson: this is so easy. Yeah.

Melissa Lunardini:  Everybody should do it.

Katie Wilkinson:  And you're right. Flowers are out here getting crazy. So I think this is a really, you know, intentional and beautiful gift and just to clarify, that $99 is for like an annual subscription. Well.

Melissa Lunardini:  it is so it's for 12 months of support and if you start with a caregiver product, perhaps your person doesn't live for 12 months which is Um, fine, you get naturally transitioned into our grief product, so you'll still get 12 months of support. No matter what, it'll just be contingent on the phase in which you're needing the support. And then, of course, the grief product. So to help texts for grief is fully up and well. So if you have been a caregiver and your loved one has died and you're really struggling or wanting some support or perhaps you're not struggling, but you just want X support. This becomes a really viable option and it's also 99 dollars and it's A great support, gentle and non-invasive. It's pretty amazing.


Katie Wilkinson: Yeah, I love that. I love how smart it is. Like, the product is smart, you know, by way of helping people sort of navigate where they are. So they're not getting texts that are irrelevant to where they are in their journey. My last question for you would like to ask everyone that comes on the cost of caring podcast.

Melissa Lunardini:  Yeah.

Katie Wilkinson: What is your number one tip for family caregivers?

Melissa’s top tip for family caregivers

Melissa Lunardini:  Oh yeah, that's a good one. I'm just going to go back to my own personal experience for a moment here and it would be to  don't fall into the cognitive trap. So the trap of thinking that you're the only one that can provide quality care to your loved one.

Melissa Lunardini:  Because burnout does happen really quickly.

Melissa Lunardini:  It's one of the hardest things that I think any caregiver has to do, is to be okay with moderate to excellent levels of care throughout the care journey. And I say that because perhaps, you provide, excellent care, but somebody else may only provide moderate levels of care to your loved one. And, and that's okay. Because unless you have a lot of resources,

Melissa Lunardini:  You know, the reality is is that you just have to be able to reconcile with yourself that moderate to excellent levels of care. Is going to be okay.

Katie Wilkinson: An important one.

Katie Wilkinson:  Melissa. Thank you so much for joining this conversation and we'll be sure to share it with you. Once it's, you know, live and tag help texts so that people can find these support products there

Melissa Lunardini: Yes, thank you so much for having me and we're so excited for the work that you're continuing to do in the space as well.