Understanding Essential Aspects of Processing Grief with Special Guest, Heidi Dunstan, Certified Grief Educator

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hi everybody, welcome to a brand new episode of the Truth, Lies Alzheimer's Show. And I'm Lisa Skinner, your host. I am super, super excited today because I have a very, very special guest with me here today. And she's not only a special guest, but she's a very special person in my life. We haven't known each other all that long, but I just, I just feel a real connection with her. So I am very pleased to introduce you to Heidi Dunstan, and I'm going to tell you a little bit about Heidi and why she is going to join me in a very important discussion, uh, today that is kind of like Alzheimer's and dementia. It's not an easy topic to talk about, but it's a topic that we all need to talk about and not hide our heads in the sand because it happens to all of us. So With that said, please let me introduce Heidi Dunstan. I'm going to tell you a little bit about her. Heidi is an international bestselling author and she's a certified grief educator. She has a passion to help others learn about grief. So guess what we're talking about today and how to support others who are grieving and going through the grief process. Her experience came firsthand after sadly losing her husband unexpectedly in 2018, and dealing with loved ones saying the wrong thing or completely disappearing showed her that many people have never learned how to grieve. Heidi believes that grief is love. I can't agree with her more. And it should never ever be done alone. So she teaches people what to say and what not to say to grievers and gives them the tools to lean into grief so we can all grieve with grace, as she says.

And I think that's a beautiful thing.

So Welcome to the Truth, Lies, and Alzheimer's Show. Heidi, I'm so happy to have you here. And why don't we just start with what inspired you to become a grief educator? It was probably the sudden death of your husband, but if you'd like to tell us that story and, and kind of what brought you to this point in your life today, I'm sure everybody would love to hear.

Awesome. Thanks, Lisa Skinner, and thanks for having me. It's a huge honor to be here. Like you, I do feel a connection to you as well. So as much as our time together has been short, it has definitely been meaningful.

Absolutely.

And yeah, unfortunately I did lose my husband unexpectedly, and it was— he had a massive heart attack in 2018. It wasn't planned. Obviously heart attacks usually don't— you don't schedule those, and I have a great network of friends, and some of them were amazing at showing up and holding space, and some of them often would stick their foot in their mouth or just say things that were really inappropriate, and it was awkward for both of us. And then I had some people who were just silent, and they completely disappeared out of my life. And as I spent more and more time with other grievers, because typically what happens when you go through grief is you try to find other people going through the same path, no different than dementia. I think, you know, a lot of people, family members that are trying to support a loved one going through dementia, they tend to go to other people going through it so they can kind of relate. I found that with other grievers, many of them were going through the same thing, that the grief was hard enough, but then they felt like they got kicked while they were down by people that they thought were going to show up.

Yeah.

And when I really looked at it, I was like, these people didn't say these things to be malicious. They weren't mean. It's that we don't talk about it. We've never been taught. I don't remember ever taking the grief class in school. Um, I learned about grief as a psychology major, but I didn't, I didn't learn those intricacies of those sticky conversations. And it means that—

Can you share with us some of the things that people said, whether they meant it from their heart, but it just didn't come across to you, the person that was going through the grief process, some of the things that just ended up really hurting you or bothering you? So maybe, um, sure, our audience will, uh, learn from, from your experience.

Definitely. Um, just a couple hours after my husband died, somebody dropped off a little plastic plant and a bottle of rum. The plastic plant said, "Live, laugh, love." Um, probably not. Like, I wasn't home from the hospital 2 hours. I wasn't really in the best place to receive that kind of gift.

I can understand that totally. Yeah.

Yeah. Days after he died, don't worry, you're young, you'll find love again. And keep, keep in mind, he died the day before my 40th birthday. So some people, instead of, um, like, they would be like, happy birthday, I hope you're celebrating today. And I'm like, no, definitely not. Um, I had people that would say, I understand grief, I went through divorce. And there is a lot of grief when there comes to divorce, but they're not the same. And when you approach the conversation like that, it feels like you're comparing and there is no comparison. I didn't choose to leave my husband, right? And so when you say—

we— I've heard you use this term several times. In other conversations that we've had on this topic. And I watched you on another interview. One of the terms that you use that I find, um, intriguing is hold space. Would you please tell us what is meant by that? Because I think that that's a really important concept in helping support somebody who's going through the grieving process. But what exactly What does that mean?

For me, it means loving somebody exactly where they're at without judgment. Listening and, and listening to just hold space, not to respond, to not go, oh, well, why don't you try this? Or why don't you fix that? Or why don't you think about it this way? How about just listening to hold space to say, this hurts, and I see it hurts. I see that this is a significant loss. And without judgment. The hard part is, is grief is an individual's fingerprint and we all move through it differently. You know, I cry a lot. Other people, somebody else may not cry at all, but we tend to judge how people move through grief. Right. I often say to people, have you watched the show America's Got Talent before?

You know, I never have watched that one.

Okay. Well, they have a golden buzzer and the golden buzzer means that the contestants get to go to the live rounds. It means kind of they get to jumpstart their dreams. And the thing that I always say to people is when they, when they get that golden buzzer, none of them celebrate the same. And we celebrate alongside them. We don't judge them. But when people move through pain or when they move through a difficult time in their life, we tend to judge them and think about how they could do it differently or how they could do it better. And we need to release that judgment. I believe that judgment is grief's kryptonite. No different.

I have found the same to be true when loved ones or caregivers or even, you know, anybody that connects with somebody living with Alzheimer's disease and related dementia, they do the exact same thing. So what if I said to you, would this be an appropriate thing to say? Heidi, I can't even imagine what you are going through during this time, but all I know is that it must be a really difficult period for you in your life. Would that be an appropriate thing to say?

Depending on the person, yeah, it, it would be. I, I offer you another alternative is saying, you know, losing A spouse is a significant loss. Losing a sibling is a significant loss. Acknowledging that it is significant, making it about them rather than I can't imagine, because really we, we can imagine. We don't necessarily know the depth of that. And so acknowledging, you know, I, I'll be honest, I had people that were, were like, that's really hard. And it was like, thank you, thank you for seeing that this isn't easy.

That's great advice. Yeah. And we've been taught, you know, I'm a certified dementia practitioner and I practice person-centered approach to dementia care. And one of the very core principles of that is validating somebody's feelings.

Yeah.

Which is so important to people who suffer from cognitive loss. And it sounds like It's just like a human, comforting human response to that situation as well.

Yeah, it's really just seeing somebody exactly where they're at and allowing them to be there. And it's okay if the person says, I don't really want to talk about it today. Can we talk about normal? Because maybe that's what they need today and that we don't need to judge that. What if it is like, hey, today is a really hard day and I just want to cry? And I mean, I had somebody that just sat at a lunch with me and I wept, like messy cried. And he wasn't throwing Kleenex in my face telling me to, oh, don't worry, you'll cry. If you cry, I'll cry too. He just let me cry. And there was never a, do you remember that day? It was just, it was such a beautiful moment. And it's the people that stopped and held space for me that I cherish. It's those ones that, that they didn't try to fix it. They didn't try to gloss it over with silver linings of, oh, he's in a better place, or, you know, time heals all wounds.

Oh, and I think we just, we just instinctively have a tendency to say things like that, but we sincerely think we're, we're saying the right things. But yeah, I, I mean, this is an awkward, awkward position for all of us to be in, the person who is suffering the loss and the people who are trying to support. So this is why this conversation is so helpful and so important, because it's just a lot of us don't know what to say. And like you say, there's no manual that we learn. We weren't pulled aside in high school and say, okay, if you ever come across somebody loses a loved one, here's how you should approach the situation. I don't remember ever being taught that.

Typically we've done what we've all— what we've been shown is we send a card, we say I'm sorry for your loss, we maybe send some flowers, and we maybe make a casserole or a lasagna. Yeah. And we go to the service and then that's it. But grief goes so much further than that. And And grief isn't just when somebody dies. I mean, many of the listeners, if they're taking care of somebody with dementia, they're probably grieving because the person that they loved today isn't the person that they, that they had before.

Exactly.

And they continue to change. And so grief is everywhere. And sometimes it could be something as simple as sitting and, and remembering and letting somebody reminisce about their mom or their dad. Even though they're still alive, but they're struggling with dementia, holding that space and letting them reminisce and letting them, you know, acknowledge the fact that what they're going through is hard right now.

That's exactly right. Well, let me ask you this, and I know that you are a certified grief educator. So either in your opinion, your experience through your certification and educational process, what do you feel is the difference between grief and mourning? Is there a difference to you? And if there is, do you, uh, you know, want to elaborate?

For me, I, I give people the fact that With grief, we use different words. We use death, we use passed away, we do passed on, we do loss. We use different words and some people will grieve, some people will mourn. I allow them to let the word be what they need it to be.

Oh, that's a good— I think that's really sound advice. Yeah. And then do you find that it's true that people really need to go through the 5 stages of grief and how, how does it manifest in, in various people? It probably is like dementia. It's the, you know, individual case by case and everybody goes through it differently. But do you, do you believe in those stages and that people have to go through every single one of them in their own comfortable time?

So I believe that grief is a hot mess. I believe that the stages are emotions that we go through. But the hard part with us as humans, when we hear stages, we believe one and done and that they should go in order. And grief doesn't work like that. Oh, and they don't. No, they don't. And so as much as I'm certified from David Kessler, who believes, you know, who was Elisabeth Kübler-Ross's protégé. And she was the founder, or she was the one that coined the term the 5 stages of dying, or the 5 stages of death, which then kind of got adopted into the 5 stages of grief, which they aren't the same, right? Typically, people who know that they are dying will go through the 5 stages, but the people going through grief, it's a hot mess, and they could be sad one day, angry another, and bargaining another, and then have hope the next, and then back to anger another day. And so I'm cautious in telling people stages. I really just allow people and honor— ask people to honor their process. I wish it was one and done. I'm not gonna lie. You know, my first 18 months after Mike died, they were hard because I felt like, why am I going through this emotion again? And you have to really acknowledge the fact that you can move through them multiple times. And even I'm 6 years out almost, and there are still days that I'm like, this is hard.

Well, you know, let me ask you this for our listeners. Should people expect to go through the stages of the grief process? And it— would your advice be you really need to process every single stage till you're ready to move on to the next one?

Sometimes you can't. You know, I met a woman just months after Mike died that, you know, I was coming out of grief counseling and I looked like I'd been at grief counseling, so I was quite emotional. And she said, were you just at the grief program? I said, yeah. She goes, do the work now. She goes, My husband died 7 years ago and I'm just starting counseling now. She couldn't deal with it. She had delayed grief and she couldn't deal with it. And so some people, it can take a long time. Some people maybe have had the conversations with their loved one and they've got some resolve before they've passed. Um, we don't get to choose what their grief looks like. And so sometimes our bodies don't even let us do it. And sometimes our bodies do more than what we anticipate. And so I always encourage people, as you move through grief, reach out to your— one, your physician, and two, somebody who is certified in grief support, whether it be a grief coach, a grief therapist, a grief counselor. Make sure they are certified in grief because the support that you can get from just a general counselor, general, general therapist is not going to probably meet your needs. And in fact, there are therapists, like there's Megan Devine, for example, was a psychotherapist, lost her husband, and realized after losing her husband that she missed the mark in many of her grief conversations with patients and now is a huge grief advocate because we need to do it differently and we deserve to do it differently and honor the people that we've lost. And honor those left behind.

So can you share with us what some of the common misconceptions are about grief that you encounter when you educate people, or that you encountered personally?

Um, I would say that a lot of people think that grief just happens at home, and they fail to realize that it happens at the office, and that They don't really— managers and large companies don't really realize that a large amount of their turnover could be due to the fact that somebody has had a significant loss in their life and has tried to come back to work and they're different and they feel like they're being treated different and they leave because they don't feel like they fit anymore. Even friendships, those friendships that disappeared for me were really hard. I grieve those losses just as much as I grieve my husband. And so when you don't know what to say, be that. Say, I don't have the words. I, I'm terrible at these situations, but I want you to know you're important to me.

And simple as that, huh?

Yeah, because guess what? When you don't say anything, the person who doesn't get the response is telling a story in their head as to why they're not there. And that story may not be the actual truth. And the truth is you don't have the words and that it's really hard. But just show up and say, you know what, can I take your garbage out? Hey, you know what, I'm not good at these conversations, but can I clean up your leaves? It's autumn. Can I mow the lawn? Show up in ways that you can rather than call me if you need me.

Yeah.

I often say, how can I support you? Or please let me know what I can do to support you. Because I can tell you, when somebody is in early days, weeks, months, or even the first year of major, a major loss, they don't know what they need. And, you know, I have a friend right now whose husband has a significant tumor. And for months, I'm in a group chat. There's like 76 people. We're all sending our thoughts and prayers. And after a few months, like after recent, early in the conversation, I said, is there anything I can do to support? No, no, no. She was doing her thing, right? You know how us women are. We like to just, the best way to navigate it is to keep in control of all the pieces. So I let her do her thing. And then she had a tough day and I, in the group chat, I said, you know, can I set up a meal train so that people could either send you guys gift cards to order food or they can drop food off that you can put in your freezer? For those days when you just don't have the strength to cook. And before she had the ability to say no, 6 people said, we would love to be able to do this, please set it up. And so I did. And all of a sudden she was like, it sure was nice to not have to cook or have to think about what to make or, you know, just we had friends that were from out of town and they just ordered Uber Eats gift cards for us through this site. And it was great.. And, and that's how we can show up. You know, I met with them shortly after I set it up and I said, you know, you guys have had huge impact on such a big community. Could we all just record a little video? And I used a website called Vidae and for a really small fee, I created this hour-long video of like 30 people who love them and, and they can watch that video anytime they want.

Did you have that type of support when you were going through your grief process with the, uh, I had somebody set up a meal train.

That's actually where I got exposed to it.

I was going to ask you about that. Were you like grateful for the times that you didn't even have to think about?

Yeah. You know, it was, it was really nice because, um, it's a website, so it's just a link. People can click on it. I could say how many days a week I wanted food and for how many people. I could put my, any food intolerances in there. And then people also listed what they were bringing. And so I didn't end up with 17 lasagnas. Yeah, you know, and, and so that was kind of nice to have a little bit of variety. And it was free, you know, for a small fee. I think you can add like driving kids to school or chores and things like that. I think it's like $10 or $15, but the meal train itself is free and it allowed me to I could send it to my business community as an entrepreneur. They wanted to support me. I had another group of friends. It was just a link so I could send it to anybody that was like, hey, how can I help?

Yeah, because the reality is some of these things that we've been talking about that are kind of out of the box thinking, not traditional. None of us would unless we've been through it like you. That's why I asked you if it having a meal train was helpful to you, so you knew how it would make somebody else feel. But, um, I mean, I think some of these things we just can't even wrap our heads around, thinking that something like that would make a huge, huge difference.

Yeah.

Especially when you are going through the grieving process, because maybe if, if somebody doesn't really understand what that feels like, you can— I mean, like you said, have said, some days you can barely— you barely have the strength to get out of bed, let alone go to the store, have to think about what sounds good, and then come home and make it and just have it there for you. So, uh, yeah, these are, these are all really important and valuable nuggets to share because just something like that could make a huge difference to a person who's grieving.

Exactly. And one of the things that I always tell people is that what happens when we go through trauma, lots of people, they either curl up in a ball and they kind of disappear and kind of move through their emotions alone, or two, they take on everything and want to kind of control it because that's all they can control. And giving them a tool like this, giving it for her, like my friend, you know, it was That was her way of controlling everything, and I totally understood why she was doing it. But it meant that she was also missing out on the fact that she had this whole community of people that wanted to embrace her, wanted to help her, but didn't know how. And something as simple as making a meal or sending a gift card also gave them purpose. And that's the important part about leaning into grief, is that we both have to. Right. We both have to lean in and support. And no different than when with the people that are dealing with, you know, somebody who— a loved one dealing with dementia, their life is uprooted and they're dealing with weird stuff. Right. I mean, you know that my, my grandmother is moving through dementia and there's not a lot of people that you want to share that with. Right. In the sense of, oh, I went and this is what's going on. I have a few people that I will, you know, I tend to, you know me, I tend to use the humor in what she does. But, you know, it is nice when somebody says, hey, I see that that's, it's got to be a struggle and that there could be places and spaces where they could support because life is full as we try to navigate those changes.

So one of the things that I wanted to do with you today, you and I talked about this very briefly. Is because I just think this is so important. I mean, your experience with your husband is a completely different situation than how people may grieve with a loved one who is progressing through dementia and then after they pass away. But what I wanted to do is, is draw some parallels Even though they were different situations, a lot of the process is the same. But the one thing that is very unusual about watching a loved one go through the stages and the decline that comes with brain disease is And a lot of people feel this way. A lot of people, um, have, have shared this with me. I've seen it myself, is that you end up losing your loved one twice. The first time is when they become so cognitively impaired that you don't know who they are anymore, and they don't know who you are, and that's a loss.

It is.

Even though that person's heart is beating and they feel emotions and, and they're, you know, a real living, thriving person on the inside, it's not the same person you knew. So that is a true loss.

Yes.

And then they pass away. Let me read to you a couple of things that some of my clients have told me. Many of the family members that I've worked with over the past 3 decades have shared with me that watching a family member suffer from dementia is like losing them twice. I totally agree with that. I've had 8 family members who have passed on from a dementia-related illness. You know, first it's through the decline of the disease, and then of course upon their physical death. One woman whose mother is currently progressing through dementia said, and you can probably relate to this since you have your grandma going through the same thing, I don't know how to come to terms with the loss of a mother who's still alive. The person I would always run to, who would love me and hug me and tell me everything is going to be okay. Is just not there anymore. But she is there. So that's how she, um, kind of felt about her mom progressing through the stages and watching that person just completely disappear in front of her eyes. And then I'll read you one more, and then you can kind of give me your thoughts.

On.

Are you feeling this way about your grandma? Can you see parallels between what people— their grieving process that they're going through, not just once but twice, uh, with a brain disease? But this woman says, watching my beloved mother die piece by piece is so much more painful than a sudden loss. So we'll get to that in a second. In 3 years, we have seen her decline from just repeating herself and having some mobility issues to being bedridden and totally concerned 90% of the time. She and my father live in an independent living apartment in a senior living center, but then they ended up having hospice come in to help. But it's not nearly enough. Let's kind of rewind back to— she, she— because now you, you know, you've been through a sudden loss, but you're also going through watching your grandmother, the first part of the grief, losing the grandma you knew and probably adored, and then eventually she'll pass away. So then you'll, you'll have to grieve that loss. Um, do you agree with, with, with that statement that you think that watching somebody die piece by piece would be more painful than a sudden loss? I don't know how, how, um, you can make that— just how a person can make that distinction. I think loss is loss.

But yeah, again, I think it's dangerous to compare. Um, right now she's living in it, so You have to remember that pain can only be felt. Like, I can only tell you what my pain is. And maybe the level— you know how when you go to the hospital and they ask you, what's your pain tolerance, or what's your pain level between 1 and 10? My 7 might be different than your 7. Yeah. And so right now, her 10 is, this is the worst, right? And nothing else can compare to it in her world. And maybe she has had somebody who has died by a sudden loss. And this is harder for her. And I respect that. I can tell you that I, I, I have— I know people who have died slowly, whether it be by dementia or cancer or ALS. And I know people that have gone through the same situation as me.

Yeah.

Pain is pain. Pain is pain. Pain is pain. And so I don't compare. But I also don't tell people, you know, after somebody's died of ALS or somebody's died of dementia, well, at least they're in a better place. Yeah. Or at least they're not suffering anymore because the person right in front of you is suffering. And it isn't until that person— so for example, I had a good friend of mine, her husband died of ALS. It wasn't until she said, I'm grateful I don't have to watch him suffer anymore, that we could dive down that conversation. But it was not my conversation to start. That it was not my place to start that conversation with her. And so same with dementia. We watch our people with dementia pass away before our eyes, and oftentimes it takes a long time. It's not fast. But then when they do pass, lots of times what people will say is, at least they're not suffering anymore.

I hear that all the time.

And I find that that's an inappropriate thing to say until somebody has talked about it. Right. And so I tend to say, you know, losing your mom is hard. Losing your dad, I know how important he was in your life. And even though they've been grieving it for a while, know that that grief for them, it might be a relief, but it might also be like, you know, they may feel guilty that they've got that, feel that relief. And that—

I was just going to say that. Yeah. Because I remember my mother-in-law was one. Of my 8 family members that lived with Alzheimer's disease. And her own daughters, after she passed away, that was their remark, was, well, it's finally over. She's not suffering anymore. She's in a better place. And I took that as that was how they were expressing their relief that it, that it was over for them, not necessarily over for her.

Yeah.

They couldn't climb into her world and know how she was living her life through dementia. She seemed to be really happy and happy-go-lucky, but it was agonizing for them to watch it. So when it was all said and done, That's how they expressed their relief, but I think it was more on their own behalf than on her behalf. Do you agree with that statement?

Yep. And, and some people can move through and go, hey, you know, like, it, it has been a lot having to care for her and make sure she's had, has what she needs. And they may naturally just have that relief and have moved through that grief cycle. And some people may have guilt. Where they're like, why do I feel guilty? You know, that was my mom.

I saw that too. Yes.

Right. And so, but it's not our place to judge where that's at. It could— it's for me, I just see people where they're at and I'm like, I see this is hard, or I see that you're finding places to honor and cherish your mom in beautiful places. And, and that's, you know, one of the, one of the reasons I was drawn to the David Kessler training was his book where he created kind of this quote, sixth stage, which was called finding meaning. And he wrote a book called Finding Meaning, and it really was about finding ways to carry on legacy. And I truly believe that if we don't find places and spaces where we hold space for grief and, and support people who are grieving, we will lose the legacies of those we've lost. The best compliment I can get from somebody is when they tell me that they wish they met my Mike, because it means I carried on some of his— the, the, the, the energy that he had in this life. I've been able to carry it on with the stories and the things that he did. And we don't get to do that when we, when we're afraid to walk into those conversations about grief.

Yeah. And I don't know, my experience This is just me. I find it healthier to talk about the people that were special to me, even though they're not with me anymore, than to pretend they never existed after they passed away. And I think that's because people are afraid to go back there, but I think it, it carries on the legacy, and it, it brings meaning to your relationship with that person. That, okay, they're no longer with us, but it was very special when they were, and I always want to remember that. I do that with my pets. My pets are so much part of my family that even though many of them have passed away, I still talk about funny things that you know, I remember about this dog or that dog because it makes me feel good to have those memories as part of my life and still part of my heart. And people who have passed. I've lost both my parents. And yeah, I mean, I like to reminisce about funny things like my dad telling my daughter Well, I think it's time for you to go play on the freeway now. I mean, just that was my dad's humor.

Yeah.

And here, you know, my daughter could have been like 3 or 4 years old and it's like, why? Why is Grandpa telling me to go play on the freeway? And then finally she got to the age where I think he's joking.

Yeah.

But see, we laugh about those things now. She's, you know, she's a grown woman with kids of her own. But we talk about those funny moments with, you know, my dad's just outlandish sense of humor, telling a 3-year-old or a 4-year-old to go play on the freeway.

Exactly right. And so, you know, lots of times when people share memories of their person, especially with people that know, like, that are in their inner circle or like kind of close to them, sometimes they may get the judgment of, are you stuck in your grief? Like, why are you still talking about them? And, you know, I really hope that people go, wow, I'm really glad that you're able to remember them and honor them and carry on their legacies.

Yeah.

You know, and it's, it's amazing. Like, I mean, you know that I travel quite a bit for work and I get the honor to do some really cool things. And one of the things, I mean, generally, like, general conversation. I mean, you know, I spend a lot of time in airplanes and Ubers and Um, and people ask my relationship stuff. Are you married? And I say I'm widowed. If I feel up to the conversation, I say I'm widowed. And one of the first questions that always comes up is, how did he die? And I, I tell people, unless you're in the inner circle, I don't ask. I don't need to know how they died because I can't bring them back. That isn't information that, like, All it really does is take me back to the day he died.

Yeah, understandable.

But I do believe that because of TV, like the crime shows and news and all that, cause of death seems to, seems to be important, but it's really not. Unless you have the gift of bringing somebody back from the dead, it really doesn't give any information. And so when I do encounter conversations where maybe I see somebody crying and they let me know that they're grieving, like they say, hey, you know, so-and-so died, I might just say, was it an expected loss? That'll give me enough information to know, like, and they might give— I want them to know that they can talk to me, but I don't need to know all the nitty-gritty details. And one of the greatest questions that I had, probably about 9 months after Mike passed, he was a retired fireman, and I was at a pensioners dinner where they were honoring the lost firemen for the year. And I was sitting at a table, and the gentleman could tell I was a widow because I was with a girlfriend of mine. So he knew that there's probably a loss there. And, and when he found out who it was, it was a friend of Mike, was a friend of his. And he had seen— he told me, he said, I saw him like about a week before he passed at the children's Christmas party. And then I got the email, and he goes, and It just didn't make sense. He told me how happy he was and how in love he was, and he was so vibrant and full of life. And instead of saying, what was the cause of death? He said, may I ask what happened? He asked for permission for me to go there. And that is a very different question than how did he die.

Yeah.

And so asking for permission is always a better way. It is a way more graceful way. May I ask your husband's name? May I ask your daughter's name? It allows them to decide if they want to go there with you. You're asking for permission and you're letting them know.

You're not putting them on the spot.

Yeah, right. It's, it's a, it's a gentle way of doing that. And that's no different. The please let me know how I can support you is way better than call me if you need me. Or it could be, may I drive your kids to school this week? Can I pick up some groceries for you? Offering them, offer up places and spaces where you're willing to hold space with them and support them without having them make the decision because it's hard for them, especially in the early days, weeks, and months.

So can you share with our listeners maybe some of the healthier coping mechanisms that you found to be really helpful for you? And did you find them through trial and error? Did you find them through, you know, somebody supporting you, a support group? But what, what were some of the healthier coping mechanisms that you found helped you that you, you know, pass on to the people that you support?

For sure. In terms of my grief or in terms of supporting somebody?

Your grief.

My grief. Um, gratitude's a big one. It's—

can you elaborate on that a little bit?

Um, for the times when grief got really heavy and really dark, and it does because that's what grief is, um, has a piece of, um, I always had to move into the places where I was grateful that I had Link. So that I didn't get stuck in those places. Um, and, you know, reminiscing on those places and spaces. The gift we have of social media, um, when you, when you've lost an amazing human, and unfortunately not everybody passes, not all, not all of our loved ones are amazing humans, they do the best they can with what they have. Yeah. Mike was an amazing human. I really leaned on other people's memories.

Um, and wanting to hear stories of their relationship.

Yeah, I did. Some people don't. Some, some people, that's not their jam. But for me, I can tell you, for months I read those social media posts over and over again because it reminded me how much he was loved and that it wasn't just about me. Um, for me, I knew that as much as I wanted to curl up and just hide away, that that would mean his death— me curling up would mean that that's all that— all of that is tragic. And I had to move through the emotions. I really forced myself to move through those emotions because I knew that I had to do something different with the knowledge that I was gaining from moving through grief and being around other grievers and seeing that there's such a big misconception of grief, and I knew I wanted to help. That was a big piece.

Can you honestly say, because it's been 6 years, correct?

It'll be 6 years at Christmas time. Yeah. Christmas time.

To everything that you've been through, all the stages, the grieving process that, you know, you've experienced. Do you think it's fair to say that you have finally come out the other side and you are in a space now where when you think about him, it's all the happy memories and the special times? Or do you still find yourself kind of in that black abyss where thinking about him just drudges up sadness? And or is it now? Do you ever get through that part? Have you gotten through that part?

And now I'll say that I am today. I'm going to phrase it this way.

Okay.

I can say I'm there today.

Okay. But not every day.

Not every day. Not every moment. No. I— you have to remember, Lisa, that there are going to be like— there's going to come a time where I'm going to be older than Mike was when he died.

Yeah.

And that day is gonna be a hard day. And so, you know, there's gonna be times that it, it's just gonna be heavy. And am I the zombie I was the first 18 months after he passed? No, I'm not that person anymore. But do I still have places and spaces where I miss him?

Of course. Yeah. You probably will always have places, spaces where you, yeah. I don't think that ever goes away.

And we have to remember that when those moments happen, and even just the thought evokes some tears for me, and I think this is audio only. And we have to remember that when we witness grief, it's because emotions have come up. Right? And otherwise, we typically don't witness it unless somebody says something. And so typically, if you saw somebody who was having a moment where they maybe were really missing their mom or missing their child or missing their dog, missing their sibling, remember that you've approached— encouraged them on a moment. And quite easily, our go-to is, are you stuck in your grief? When you maybe just bumped into them at that precise moment when all you could say is, "I see that's hard for you right now," and you could just hold space for them in that moment. They could be fine 10 minutes later or the next day, but that moment, maybe a song and a smell triggered something where it was like, "I miss my person," and you can be like, "Thank you for sharing your tears with me." That's a way different statement than I is stuck in your grief. And, and know that when somebody shares their piece of their grief with me, I see it as an honor, not a burden. Mm-hmm. I believe that those are windows and spaces that we don't get to see very often. Yeah.

Well, this conversation is— this conversation certainly has been heart-opening experience. I'm going to ask you one last question. Yeah. Um, what I, I think, you know, one of the purposes of exploring this topic today, because it definitely pertains to people who are watching their loved ones or caring for people that are going through the dementia process. So let's Let's have some advice for grievers. What is one piece— it could be more than one, but one would be fine— of advice that you would give someone currently navigating their grief journey that maybe you wished you had known in the beginning of yours?

Make sure that you have the supports with you, whether it be somebody in like, you know, whether you're in a dementia group or, you know, for survivors, uh, or for family members with dementia, pardon me, um, or grief, somebody's trained in grief. And then maybe have somebody that you trust that you can be like, hey, you know, some days I just need somebody to hold some space with me. And, and I don't want somebody who's going to try to fix this because you can't fix this. You know, there's at this point not a lot that gets reversed with dementia. It only gets worse.

Yeah.

You know, I mean, I had somebody recently say, I hope your grandma gets better. I was like, you know, she has dementia, right? Like, um, and so, yeah, right. I would love it to happen. I would love for it to be the reverse. Um, but know that, you know, as a grief person that you also have going through grief, know that you also have to ask for what you want. And that's probably one of the hardest parts of all of this, is that we're so raw when we're moving through grief and we're, we're dealing with all this other stuff. But sometimes when you've got somebody you trust, you might want to say, hey, please don't say, I hope she feels better, or please don't say this. Like, just let them know what has irked you so that there isn't a divide or an elephant in the room. And so make sure you've got the professionals around you. Let your doctor know what's going on in your life. You know, that's a big one because you have no idea, like, your sleep gets impacted. Grief impacts— it's not just an emotional process, it's a physical process. It impacts every fiber of your being. You will— your sleep will change. How you eat, what you eat, how you process food. All of that will change. So let the team of people around you know what's going on so that if they see changes in you, that they can say, hey, I see this, can we talk about it? And give them permission to do that so that if you're not aware, oh my gosh, you know, I had lots of people in the first 3 months, I couldn't eat. I just couldn't. And I lost 40 pounds. Now, Lisa, losing 40 pounds on my body was a good thing because I got a little extra. But at 3 months after, so many people were telling me how good I looked, but I only had one friend who said, have you lost all this weight because you're not eating?

Oh, and so that's powerful.

Yeah, right. But make sure you've got people around you that can ask those questions in a loving way. Yeah, right. And, and then she turned around, she's like, I'd like to have you over for dinner and bring some Tupperware containers. I'll send you home with some leftovers. I want you to spend the night so we can have dessert and I'll make you breakfast. We'll just have a movie night. There's a brilliant way to hold space. And so those are, those are the things that you can just lean in and, and let somebody know that you see them. And that is without judgment.

Wonderful, wonderful advice. I'm not going to ask you any more questions, but I'm sure everybody would be curious to know what is— because I know you're certified dementia educator, grief educator. I'm the certified.

I'm like, wait, we traded, we traded certs.

Certified grief educator. Thank you for correcting me on that. Um, how do you go about supporting people? What— what if somebody wanted to, to get in touch with you? How would they go about doing that? And what's your process so people kind of have a, a good idea of how the whole thing would work if they happened to.

So lots of people reach out to me and they're like, hey, my, my friend lost her husband, or my, my friend lost her, his wife. Can you help them? And I always say, no, I'll help you. I teach the people around grief. So feel free to check me out on HeidiDunstan.ca or .com and, um, register for my complimentary masterclass. It's a free 35 to 45 minute workshop that I do live online a few times a year. Different topics. Sometimes it's what to say and not say to somebody who's grieving. As we get close to the holidays, you'll see me do one, how to invite somebody in their grief to the holiday table. Um, and, and come and learn a little bit more about why I do what I do and tips and tricks on how you can support somebody as they move through the loss of somebody important to them.

Oh, what an amazing resource for people, in not just the people that are going through the grief, but friends and, and neighbors.

Some of the people have gone, taken the workshop that have gone, that are in grief themselves, have gone, you helped me understand why things didn't feel right when people talk to me. Something as simple as changing instead of how are you, saying how's the day? So they didn't have to say they were fine, okay, or good. Yeah, they weren't any of those.

I can certainly see the value in that because it is an awkward situation for everybody. So yeah, so getting that type of advice, I could be— could really make a difference in somebody's day at some point just by knowing what to say or knowing what not to say.

I also have had so many people finish that masterclass and oddly enough had somebody that they've had to use those tools with and they're like, I felt so much better after being able to support them. Like, I felt like I brought value and was able to hold space with them. And rather than that, well, that was weird conversation, you know, sometimes it's like, I'm sorry for your loss, and you feel like, uh, just move on. But they felt like it brought meaning to their life too, because they were able to see and hold space for somebody. So it's a beautiful gift to give somebody.

Well, this has certainly been a very— not just powerful conversation, but it's been an inspirational conversation. And I just cannot tell you how much it's meant to me and hopefully the people that are going to be listening to this conversation, because I know that this is a tough topic for everybody. And, you know, you, you basically came on here and exposed yourself in the raw, and that's not an easy thing to do. And I appreciate You very, very much.

Thank you.

Is there anything else before we say pata? Anything else that you would like to share with us before we close this show today?

Yeah, I'll just say those moments when you feel like you want to run away when somebody's grieving, those are the moments when you're meant to lean in. Those are the moments when you're meant to say, I see you. I see this is hard, or I don't have words. I don't know what to say, but you're important to me. Lean in and support the people. Both people win in that conversation. Grief is meant for connection.

But I think, and I, I, I'm guilty of this myself because I'm just a natural fixer and mother, the mother type. We just instinctively want to try to fix people's pain. And I see this in the dementia world. With adult children and pretty much any— everybody who's involved. And once we understand that we can't fix the situation, but we can offer comfort— and there's a huge difference between offering comfort and support and trying to be the fixer. And I'm the first one that'll try to be the fixer because that's just my nature. My father used to call me the little mother. I had to mother everything. But that's not always the best way to approach a situation. And I've learned, I've learned through my work as a dementia practitioner. So yeah, this is, this has been really valuable. And I hope a lot of people This helps a lot of people out there, just like bringing this show on every week helps people who are going through the dementia journey with loved ones, because it's all intertwined, right?

It is. Yeah.

It's inevitable that we are going to go through this if we have a loved one living with Alzheimer's disease or related dementia.

Yeah.

Well, Heidi, thank you so much again for being here. And we'll, uh, hopefully see you on the show again at some point and, and revisit this topic because it's such an important one to share with people.

Thanks for having me, Lisa Skinner. Doing what you're doing, it's important work. Who you are makes a difference.

It was my pleasure to have you. You're, you're a very special lady. This has been just a really powerful and somewhat emotional conversation with Heidi Dunstan, our guest. Today on the Truth, Lies Alzheimer's show. I certainly have learned a lot from Heidi, and even though I've been through the grieving process myself so many times for different situations, and I know a lot of you probably have too, but I think some of the information and advice that Heidi shared with us today, I know it resonated with me, and I learned a lot from her. So hopefully y'all feel the same way. That'll conclude this episode for the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and of course, we will be back again next week with another brand new episode. I hope you all have a wonderful week, and I hope y'all take care of yourselves and each other.

Thank you for listening to Truth, Lies and Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group, where a community of like-minded caregivers, and we're here to help.