Ambiguous Loss: Disease, Estrangement and More with Denise Torgerson

Are you familiar with the term "ambiguous loss"? Just about all of us go through it at some point in our lives, but it's something Barb couldn't quite put a name to until her old friend and recurring guest Denise Torgerson described it to her. 

Ambiguous loss can come about in countless different ways, but most commonly, we feel it following the onset of Alzheimer's/dementia in a close family member or upon becoming estranged from family or friends. That ache we feel when someone leaves our lives without proper closure, or when a person has declined so much that we start to grieve the version of them we once knew? That's ambiguous loss. It happens to everyone, it's very hard to deal with, and surprisingly few people are actually talking about it.

Thankfully, Denise is here to continue the conversation with Barb and help us all get a better understanding of what exactly causes those feelings of ambiguity, as well as what we can do to heal from it. They go over different types of loss, different coping strategies, some important realizations, and most importantly, that these feelings should not be ignored. As Denise says, if you are experiencing ambiguous loss right now, it is definitely worthy of your attention.

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Transcript

SPEAKER_01 0:15

You are listening to What's Next? Conversations with Boomers. And I'm Barb Demaray, your host. We have talked about grief before, and there's many different kinds of grief. There's the grief that we experience following a death, and there's the grief we experience following the end of a relationship. And that encompasses a lot. What about when someone is still in your life, but they have Alzheimer's or dementia, or there's an estrangement. If that's the case, that is called ambiguous loss and can be very, very difficult because the relationship that you knew is no longer. So, of course, for this episode, we have our dear pod friend and my dear friend, Denise Torgeson. Welcome back, Denise. Thank you. Well, nice to be here.

SPEAKER_02 1:16

So this is a good topic, right? Yeah, it's a great topic because it's not recognized. So it's good to talk about these things that aren't recognized as much as we can, so they become recognized.

SPEAKER_01 1:28

Yeah, and put a name to it because I think you introduced me to that term, ambiguous loss. And I realized, oh my gosh, so many people are dealing with that. In our generation, if we still have our parents, many of us are dealing with parents with Alzheimer's or dementia. And the person that they knew, I certainly experienced that with my own mother. She didn't get to full-blown Alzheimer's, but she had dementia and she wasn't the mom that I grew up with. How do you differentiate that from ambiguous loss in terms of estrangement? And that is also something that many of us are experiencing, whether it be a sibling or a child, a parent, a friend, a friend that you had a long-term relationship with, and suddenly they are not part of your life, how would you say they're different?

SPEAKER_02 2:24

Well, just I'm just gonna throw out the tag about what ambiguous loss is. So here but not here, or gone but not gone. So just that's how you can think about what we're talking about. So if you're a caregiver caring for someone with uh dementia or Alzheimer's, um there's a real exhaustion piece to it, right? Because that person is always around you. So a lot of resilience and self-care is important in those kinds of scenarios. If you are a person who's estranged from someone, there's nowhere really to put your grief. There's nowhere that you can put it. So it wouldn't be exhaustion from caring for someone, but it might be exhaustion from rumination or from anxiety, or from the resistance to what's going on. I have to say, with people who have dementia, there can be a big resistance piece for the caregiver there too.

SPEAKER_01 3:22

But yeah. Well, I mean, you had a long work experience in hospice, dealt with people that were dying, and I'm sure many of them did have Alzheimer's or dementia, did they?

SPEAKER_02 3:34

I'm not gonna say many, but some, but we did have a caregivers group. And a lot of the people that came to our caregivers group, their person had some type of dementia. Even if it's not dementia, I mean it could be chronic illness. It could be kidney disease, you know. I mean, things that change how you move through the world can be considered an ambiguous loss, right? So we used to travel all the time, we don't travel at all anymore. Like that, those kinds of pieces. Oh, he used to laugh all the time. He's a very different man now. Like that, right?

SPEAKER_01 4:08

Well, and also, you know, the person that was your mother or father still is your mother or father, but now you're the person caring. You're the parent to your parents. And I know I found that really difficult. I wanted my mom.

unknown 4:23

Right.

SPEAKER_01 4:23

And I and I still think about her, I still want my mom. I want the mom that, you know, had so much common sense and conversed so easily, and we could laugh about things. And it wasn't extreme for sure. She didn't get to the point where she didn't know us, nothing like that. She she did. But she would say weird things and she'd forget, and she would ask the same question, you know, many, many, many times and all sorts of things. So suddenly, you know, you're having to guide your own parent. And I I have a feeling some people welcome that rule more easily than others, and you know, jump in and and do it. And others, I mean, I think we had it pretty easy because for one thing, my mom was in an independent living place. So, you know, her meals and all of that was looked after. But should we talk a little bit about the self-care piece of that?

SPEAKER_02 5:19

Sure. Um, I'll just say also, I think for boomers, a lot of who they're caring for are their husbands or their wives now. Exactly. Yes. So your role is completely changed from wife to caregiver or from husband to caregiver. And one of the pieces that's important to recognize it to understand is that how do I say this? I remember talking to people after their person died, and I'd say, You recognize that you were a caregiver. I wasn't a caregiver, I was her her husband, right? So they don't even recognize that the role has changed. So just I can imagine the turmoil in that still being the husband and just the resistance of what his role has become in the stages of the illness. So anyway, so how do you cope? The first way to cope is to acknowledge and accept and say out loud, like to name it. Name it as a loss and to accept it.

SPEAKER_01 6:19

It is easier when you say things out loud, isn't it? And to be honest about how you're feeling. I find this draining, and there's a little piece of me that feels resentful. I didn't sign up for this, and here I am. But I would absolutely never want my loved one, my parent, or my spouse to know that. Certainly not their fault. It's a whole mishmash of feelings. And as with anything else, find a trusted person that you can share this stuff with, and if you can't, find a counselor that you can this is this is what I'm feeling. I mean, like it's it's a this and it's that, right? And those can be opposing.

SPEAKER_02 6:58

Right. And in both. Yeah, as um someone said, you're taking a focus off of trying to fix something and putting the focus on building resilience. So how am I going to get through the moment? How am I going to get through the day? How am I going to get through the week? How am I going to get through the month? Right? And what might that look like for a person? And that changes from person to person. But I I will say that having people to talk to about it, we grieve in community, even in ambiguous loss, we need our community to support us. And very often when we're caring for someone, we lose our community. Right? So finding the right people to be able to talk about it is really important.

SPEAKER_01 7:41

I think it's really important, you know, because I worked with parents for so long, and and I used to say all the time that if you don't look after yourself, you are not going to be your best self with the people who you love the most. And I would say the same thing for people in this category who are caring for a loved one, because some people are doing it essentially full time. And how important it is to give yourself time out. I've got to take some days off and get somebody else to help you. Or I mean, I know when my mom was caring for my dad, she hired somebody to come in for, I don't know, six hours a week. So it was two hours, two hours, two hours. And that was, you know, it gave her a break. I just think that's so important because these kinds of things are draining. There's no other way to put it. It's emotionally and physically draining. So if you're not getting sleep, if you're not getting time with friends, if you're not getting proper downtime or fun time, you are eventually going to burn out.

SPEAKER_02 8:43

Well, I think there's two things going on. There's one is that you are a caregiver, and that requires an enormous amount of energy. And the other is that you are experiencing ambiguous loss. They're interwoven, but to look at them separately, I think can be helpful, right? So, yes, all of those things that you need to do to care for yourself, do whatever you can to care for yourself. And one of those pieces is accept the fact that although the world doesn't recognize it, you are grieving the loss of the person that you know. And oftentimes you're grieving the loss of who you are too, right? Because you have to be different in order to continue through this relationship.

SPEAKER_01 9:24

So well, it's a lifestyle change because suddenly you're spending many, many, many hours caring for somebody that desperately needs care.

SPEAKER_02 9:34

So it's nice to I mean if you're if you're into it, to write it down. Because it kind of brings clarity as to, oh my god, all of these things have changed. Because this has happened, all of these things are different. And uncertainty and difference is really hard for us. So to look at that and to say, oh yeah, no wonder I no wonder I'm kind of feeling crappy today or sad or whatever, you know, all of the gamut of grief emotions that show up, right? Yeah, why is it so effective writing it things down? You can see it. Writing it down and then reading it out loud is even better to someone that you trust than you can see it and hear it, and it's not just in here in a jumble.

SPEAKER_01 10:20

Gosh, and I mean, as you say, there are many illnesses that require a tremendous amount of care, Parkinson's, people with cancer, on and on and on. It's absolutely dreaming. And as you say, you're a different person because suddenly so much of your time is taken, your mental energy, physical energy, is taken up by this person. And it can be more than one person. You know, it might be a parent. Yeah, yeah. It might be your parent plus your your spouse or your child. You know, there's people in our age category who have severely autistic adult children who don't ever really grow up, you know, can never live independently. That isn't actually a loss because that person, in most cases, was born that way, but it still is in this under the same umbrella as you having to care for somebody else who's who's not you. When you were doing your caregiving group, what were some of the tips that you shared with the group?

SPEAKER_02 11:25

Well, we've already said two of the most important. One is, of course, to name it. Acceptance is a big word, but it's all about resilience in both both categories. It's all about resilience. How do we move forward with our lives when our lives are so different? So, what do I need to do to take care of myself? So name it, do your best to accept it and not resist it. See, all these things take an enormous amount of energy. If we fight against what's happening, this isn't fair, this shouldn't have happened, what's going on, why is those things require an enormous amount of energy. So to find ways, even minutes of the day, to turn that voice off in your head and find some kind of acceptance. And then the end and bows. My husband is different, and he's my husband. So he's gone and he's here, right?

SPEAKER_01 12:22

What you offered as a support group for people must have been very valuable, because that's something that, you know, no matter what you're going through, find a support group. If you can't find one, create one. Definitely.

SPEAKER_02 12:34

Because people find your people.

SPEAKER_01 12:36

And you know, there's nothing more comforting to find, okay, it's not just me, I'm not alone. There's other people going through, and there's nearly always somebody that's got it harder than you. So, yeah, I think having a support group is so good. Okay, let's see.

SPEAKER_02 12:52

Can I just give one more? I'm just gonna give one more. Part of ambiguous loss is the helplessness that goes along with the ambiguous loss because you can't fix it. It's out of your control. So find things that are in your control and work on those within your life to kind of build that sense of empowerment because it just helps with that sense of helplessness. You know, I can't do this, but I can do this, right? So that's I just wanted to say that.

SPEAKER_01 13:19

That's a really good tip. I can decide today to call a friend. I can decide today to go for a walk. I can decide today to buy flowers for myself or something. I do have agency. What can I do to make today a little easier, to brighten my day? Which kind of goes along with the episode that we did on finding joy.

SPEAKER_02 13:40

Oh, I guess it does, yeah. Yeah, also I mean how those things go hand in hand, right? Yeah. It is a choice.

SPEAKER_01 13:47

It is a choice, yeah. So ambiguous loss, now, this is also something that so many people are dealing with. You're a parent and you are estranged from your child, or you are estranged from your sibling, or from a longtime friend, which can be very, very difficult also, but there's something about the family tie that puts it in a kind of a separate category. The person that you have history with. So let's just talk about what makes it so hard and then move on to how do we deal with it?

SPEAKER_02 14:26

I think you've said this before, maybe in just our conversations, but this isn't what was supposed to happen. It's not supposed to be this way. What the heck happened? That makes it really hard. And again, there's no completion. If you're waiting for someone to apologize and they never apologize, you're never going to feel complete. So how do you find completion without getting what you want, desire, long for in the relationship, right?

SPEAKER_01 14:54

You used the word closure a few minutes ago, and these estrangements, in most cases, there's no actual closure. And as you've been saying, there's no resolve, there's no apology. And I sent you the link to that Renee Brown talk that I heard last night. It was so timely. Of course, I guess the algorithms know that I've been talking about it. But one of the things that she points out that is so very true is that in most cases, something happened to create this estrangement. And each person's story is different. This is my version of the story. That other person has a completely different story. And as you just said, those of us who feel we've been wronged or victimized in some way, we're waiting for an apology. And I think one of the best pieces of advice is just get rid of that. It may never ever happen. And plus the other person is thinking, I have nothing to apologize for, or it may never even come into their head. But you have to sort of create your own resolve, right?

SPEAKER_02 15:56

Yeah, I think so. And again, I think it well, it's a choice, right? To say, just making up a scenario, you know, my heart is broken. This person has gone from my life. They're not going to acknowledge that they hurt me, or, you know, there's not going to be a reconciliation. I can let that be my driver in life. You know, I can lead with that in everything I do, or I can make a choice to make my life bigger around the heartache. I don't know. What do you think about that, Barbie?

SPEAKER_01 16:27

Right. Well, when these things happen, we do tend to let them occupy a lot of brain space and probably too much brain space. And I speak from experience, it creates a tremendous amount of anxiety and feelings around trauma. And that's just not good. And it's exhausting, it's mentally exhausting. So for your own peace of mind, for your own mental health, physical health, and everything, you have to find a way to put this relationship to rest once and for all, and just, you know, I this isn't the way it was supposed to happen. Get rid of that. I'm waiting for an apology, got to get rid of that. Or we need to sit down and really have a heart-to-heart. That's not gonna happen. And in many cases, it will never happen. We could be going to our deathbed with these relationships never being resolved. So what we wish would happen, we have to just get rid of it.

SPEAKER_02 17:29

Yeah. So I'm gonna just change your words if that's okay with you. And you you can argue with me. I feel like get rid of something requires an enormous amount of energy. So I I want to say instead of get rid of it, we need to get rid of that thought. We need to get rid of that thought. It's hard to get rid of a thought. We need to let that thought lie, not give that thought all of our energy. That thought's not gonna go anywhere, but we're not gonna put a lot of energy towards that thought. Does that make sense? Yeah. We're trying to fix and get rid of. That just is gonna make it harder. But to say, oh, there it is again. No, I'm just not gonna give it energy right now.

SPEAKER_01 18:08

Right. I'm not gonna pay any attention to it. And again, like we were just saying about you know, writing things down, keeping a journal is really effective to put all these thoughts onto paper. And as you said, you read them, you can say it out loud, get professional help if need be.

SPEAKER_02 18:25

Just and specifically though, spend some time and write down all the things that are different or changed or gone because of the separation in that relationship. What are you grieving? You're grieving the loss of the relationship, but what does that relationship mean? What is the meaning you give it? What are all the things that aren't happening anymore because that person isn't there? To write those things like look at it, it's really hard.

SPEAKER_01 18:53

But look at also to acknowledge that what are you gaining by not having this person in your life anymore? And in many cases, you're gaining a lot. If it was a contentious relationship, if it was a toxic relationship, if it was, you know, there was lots of animosity and because we tend to romanticize the relationship when you don't have it anymore. And I think people do that whose partners leave them. And if you're the one that's left, you're you're romanticizing what you had when actually you didn't have that. You had a partner that was blah, blah, blah, blah, blah. So with estrangements, you are gaining something. Often, yes. And I think it's important to acknowledge that, especially, yes, if the person was extremely difficult and toxic and all of these things that I mentioned. Okay. You were now spared of that. Right. And, you know, as you quoted me, this isn't the way it was supposed to be. Life is like that. There's lots of things that happen in life that this wasn't the plan, this isn't the way it was supposed to be. And it's moving towards acceptance. That's it. Yeah. Which sometimes can be so challenging.

SPEAKER_02 20:12

Always. Not sometimes. Always. Always. From my experience with grief, the big step is to accept that the loss has happened. That's the big step to stop fighting that because we want it to be different. We want to fix it. We want it to be different. So moving into that place where you accept that loss, whether it be ambiguous or through death or through divorce, to accept it, that's one of the big steps into there. Now I can heal. Right? But you have to accept it first. And it's really hard.

SPEAKER_01 20:47

Yeah. None of this is easy. What did you say to people that said, I can't accept it? Yet. Yet. Okay. Yeah. Yeah. Oh gosh. How do we sort of conclude the relationship? Because ambiguous loss, there's always these loose ends. There's not the apology, there's not the reconciliation, there's not the resolve. There's not all these these loose ends that will always be loose ends. How do we tie it up in a bow and it's over? Do we do that? Is that what we're looking for?

SPEAKER_02 21:20

I mean, I don't know that we do. I think that's the ambiguous loss. It does not complete. However, I will say this ceremony. I mean, we have a ceremony when someone dies. So to put a ceremon some kind of ritual or ceremony around the loss is a way of making more space for it. And again, it could be writing things down, it could be writing things down and burning it. It could be sitting with a candle, it could be throwing a rock in the river, it could be finding a rock in the river, you know. Whatever works for the person. We're all so different. I don't I hesitate to do this. I but some kind of ritual or ceremony around the loss is a way to let go of a lot of the hanging on that we experience.

SPEAKER_01 22:13

You know, I've been thinking. I wonder how often people do that, but I think it's probably a really good idea is to create some sort of ceremony that I'm grieving the loss of this relationship. Things didn't work out as I thought they would, but this is what it is. And I'm gonna say goodbye. As hard as it is. And it is a choice, though.

SPEAKER_02 22:33

It is a choice. I can hear you in your in your words and and how you're speaking that it's like whatever the ceremony is, the ceremony is around making a decision to end the relationship. Right?

SPEAKER_01 22:47

Well, and that coming to terms with you don't have a relationship anymore. Yeah. Right? If it's somebody that you've been estranged from for decades, then that relationship is long gone. But making it official, because I think it's important to somehow do something that can stop the hoping and wishing and the ruminating and the mental clutter that it creates. Just try and stop doing that because it's not benefiting you or the other person in any way. And as Brene Brown said, you know, we're experiencing this in our own way, and they are experiencing it in their way, which can be completely different. That's right. Their story is different, and it may be that they're protecting their themselves in some way. Who knows? Who knows? Because that conversation has never happened, and to come to terms with the fact that in all likelihood it never will happen.

SPEAKER_02 23:41

Right. It's so difficult, eh? Gosh.

SPEAKER_01 23:48

It is so big. And you know, we've all spoken to people that will say, I haven't spoken to my mother or my sister or my brother or my child or whatever in years and years and years and years. And I often think about when we were given these little babies at birth. Oh, this is what happened. Or, you know, when you think about people that have restrained are strained from their parents, when you think about, you know, when you were a little kid with your mom and dad or or your mom or whoever it was.

SPEAKER_02 24:20

Yeah.

SPEAKER_01 24:20

And how that is nothing more than a memory. Yeah. The continuity has been severed. That's right. That's what's difficult that we don't expect, because we all sort of anticipate the usual trajectory. And so often, nope, that's not what's going to happen.

SPEAKER_02 24:39

Can I name two more? Ambiguous losses. Yes, just because I think they need to be named in this day and age. The first one is if someone's been incarcerated. So if you're possibly that's a good one. Yeah, because they're gone but not gone. And then the next the other one that I wanted to mention these days, it's a big one, is addiction. Mm-hmm. Yeah. So those two, all of the things that we talked about in terms of loss and ambiguity are also a part of the loss of those people, too.

SPEAKER_01 25:12

Oh, yes. Those are big ones. Those are really big ones. Yes. And certainly there's a lot of people our age, they're dealing with their adult children who are addicted or their adult child, and the addiction has gone on for many years. That's right. And yes, that's a that's a loss of you know the dreams you had for that child. That's right.

SPEAKER_02 25:35

Yeah, that's or our parents, Barbie.

SPEAKER_01 25:37

Or our parents?

SPEAKER_02 25:39

Yeah.

SPEAKER_01 25:39

Yes. It's learning how do you cope with this? Because we have to. Because throughout all this, we have our own lives to live. And at our age, you think, oh, how much longer do we have on this earth? We couldn't make it good. We couldn't make it, you know, make it potentially the best years. Where do I want to put my energy? Yeah.

SPEAKER_02 26:02

Where do I want to put my energy? Exactly. I think it's important to recognize that we are all going to have broken hearts at one point or another for one reason or another. And to not not resist that, but to care for ourselves in it. And you know, if if we didn't have a broken heart, we wouldn't be normal. That's when we worry.

SPEAKER_01 26:23

Right? Yeah. Yeah. That is part of life. Bad things happen and uh as well, good things happen.

SPEAKER_02 26:31

That's right.

SPEAKER_01 26:32

The bad things, unfortunately, they take up more space physically, emotionally, spiritually, and and everything. But and that's where gratitude journals come in, right? Yeah. Remembering despite all this, I'm grateful for Yeah. Deb Dana talks about glimmers. Have we talked about glimmers before?

SPEAKER_02 26:52

We did talk about glimmers on the glimmers are fighting with ambiguous loss. Yeah, talk more about glimmers. Well, just these little lovely things that happen throughout the day and that we don't, you know, we're we're not necessarily wired to pay attention. But a glimmer says, hey, pay attention to me. That just talking to somebody the other day whose life fell apart and she said, you know, but that flowers are blooming and they're these beautiful. I'm like, oh, that would be a glimmer, right? So these things are happening that are really, really hard for us. You know, we're caring for our parent or our partner, and these lovely things are happening alongside it. And so we to hold them both and to give attention to both.

SPEAKER_01 27:34

Good point. Yeah. I mean, something as simple as, and I know we talked about this before on the episode we did in Finding Joy, but your morning cup of coffee, like or you know, I always have a cup of tea and a cookie in the afternoon. It's such a little thing, but I just so look forward to it. Yes. Anything else we want to add to this? I I think it's a grave topic.

SPEAKER_02 27:59

No, I I don't think so. Just again to emphasize that it's worthy of your attention. If you are experiencing an ambiguous loss, if you are grieving an ambiguous loss, it's worthy of your attention. And to not dismiss it, but to acknowledge that it's real. And so from there, how do I care for myself now?

SPEAKER_01 28:23

That is such an important piece is self-care and making sure you're taking charge of you so that you can still enjoy your life, even in micro bits.

SPEAKER_02 28:36

Yeah.

SPEAKER_01 28:37

Denise, thank you as always. I love it when you come on and you always make these rich conversations richer. Thank you. Nice to be here.

SPEAKER_00 28:48

This episode was written and recorded by Barb Demaray, edited and produced by Aidan Glassy. As always, special thanks to our guests for making it possible. If you enjoyed and you'd like to hear more, follow us on Apple Podcasts, Spotify, or wherever you get your podcasts. You can also follow the show on YouTube at what's next.convos with boomers. Thanks for listening.