Alzheimer's Final Goodbye: The Unique & Complicated Grief that Follows

There are no Survivors of Alzheimer's Disease. And the grief is unique, complicated, and layered. In Episode 59, Love Conquers Alz Host/Filmmaker, Susie Singer Carter, who lost her mother last month and Daughterhood the Podcast Host, Rosanne Corcoran, who lost her mother last year,  share a very candid and revealing conversation about their personal experiences dealing with the final death of their beloved mothers and the veritable storm of the  "typically untypical" process known as Dementia Grief.

Both Susie and Rosanne have spent over a decade as hands-on caregivers for their mothers and bring an abundance of invaluable experience, knowledge, and perspective on the End of Life stage of Alzheimer's and beyond.

Rosanne Corcoran is a former caregiver and founder and host of “Daughterhood The Podcast: For Caregivers”  She is also a regional Daughterhood Circle Leader - a group that provides resources and support while caregiving.

Connect with Rosanne:
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Daughterhood Website

Connect with Susie:
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Wikipedia
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Website

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Don Priess: 1:10

Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz. A real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie Singer, Carter, and me, Don Priess..

Susie Singer Carter: 1:44

Hello, everybody. I'm Susie Singer Carter,

Don Priess: 1:47

Don Priess, and this is Love Conquers Alz. Hello, Susan.

Susie Singer Carter: 1:52

Hello, Donald.

Don Priess: 1:54

Yes. Here's a huge question. How are things?

Susie Singer Carter: 2:00

Yeah, it is huge, isn't it? Yeah. Well, it's been a it's been a little while since I've recorded because my mother's been going through her transition, which is a nice way of saying she's dying and been my my worst fear in my whole life. Like, I think my biggest fear of my entire life. And so my mom did pass away on July 17, at 1:50pm, which was a very, which was so apropos of my mother to do it at a very nice, very kind hour that she would say, Well, I'm gonna pass let's do it in the middle of the day. Why did people have to come out in the middle the night? Right? Because that would be my mother. Very thoughtful. Yes. And, you know, it's obviously every part of my mom's journey has been such a such an important part of of what I do with my life now. And it keeps informing how I move forward. And, and not in the least has been her death, which is informing how I move forward and with my community with my life and with with where I'm I think I'm bet my calling is really so it's been it's it's weird, and I think I wanted to rush into this episode, because because this has been my biggest fear of losing my mom as you all know, I could I mean, I'd probably I could have cried at just mentioned just think of my mom not here on this earth. And I'm and tears would well up if someone was talking about their mother, not here, I'm tearing up with them. And being with my mom on this really hard last six months of her life, trying to fight the system and her being pushed towards a ending that was a bit or a lot, you know? What's a nice way of saying it, Don, she was it was hastened hasted interview. Well, yeah. It really, it really dawned on me when when my mom finally passed away that how different this feeling feels than I thought it would what I predicted and it feels wildly different. And frighteningly different, because, and my even my children like thought Mom's going to be in a fetal position, she's not going to be able to get out of her room. What are we going to do? Like, we got to be there for her? I'm sure you did too, Don.You were probably

Don Priess: 4:39

Absolutely I was I you know, just based on you know, your your the relation not only the relationship you had with you the relationship you had with the with even the thought of death. That's true to him, then you know, that, because, you know, it does remind you of things and so yeah, no, I was I absolutely thought that I was not going to see you, Susie, you the real you for I didn't know how long whether whether it was three months or three years, I did not know. Right. And it's been quite different, different experience. So different. When people asked me how when people asked me about you and say how she doing I go? Well, you know, I don't know everything that's going on inside, because I don't even think you do. But remarkably well. Yeah, I think it's because of the path that you took and then the journey you took.

Susie Singer Carter: 5:35

And good, good ,good pharmaceuticals. I'm kidding. Always. kidding. I'm kidding. I really am kidding. I wish I could I wish I could I wish I was that type of person. I couldn't even drink well, like I can't drink when I'm so much easier. Right? I wish I could go I need a cocktail. No, I would do a cocktail and then I'd be like a blubbering fool, you know, and then I'm tired. So yeah, it doesn't really help me, unfortunately. But yeah, and so the reason why I thought this was Important to rush into this episode was because I'm so raw in the middle of this grief process, which I really haven't, you know, given myself the, the, the opportunity, I didn't want to look into what grief was all about it, you know, I, I lost my father when I was 16 in a plane crash, which is like a completely different death, obviously, then this long runway called Alzheimer's, which is called the longest goodbye. And so I had no idea what it was going to feel like I couldn't even imagine. And the and the reason being is, you know, I finally delved into it and did my my deep dive like I did do like I do, and it's, it's what I suspected, I mean, the grief with dementia and Alzheimer's as a caregiver is just completely different than any other kind of grief. There's aspects of it, of other grief within it, but there's unique. There's unique qualities and characteristics of this grief that that really are. There, they reall y, they really become the standard for this kind of grief. And we're also going to have one of my favorite people on today. She is one of my favorite people next to you.

Don Priess: 7:37

I'm kind of, I'm kind of am okay with her.

Susie Singer Carter: 7:42

Yeah, yeah. No, we love her. Rosanne Corcoran who's first of all, she's my newest, my new BFF sister. I love this woman so much I wouldn't be able to speak right now if it wasn't for her. She has been my rock and next to Don, through this whole process. And I'm telling you folks, we've never met in person. But I couldn't be closer to this person. I couldn't thank God for the internet. Thank God because now I'm gonna cry. Now I'm getting mushy. Mmmmm. Okay. So I mean, so I met Rosanne, she's she's such a pillar in our in our community of caregivers. She was she was, she was given the honor of being a caregiver of the year last year 2021. She is the host of a podcast called Daughterhood, the Podcast Wait, the list goes on and on. And she's she's a Daughterhood Circle Leader, which is a support group for people caregivers with Alzheimer's caring for Alzheimer's and it might be wrong and might be other other other things as well. Let me ask my producer... is it? We'll find out okay. And then and not. And also she is she works with Judy Cornish who is a mutual friend of ours within this community that we respect so much. Judy also gave me tools to navigate this journey that resonated with me down to my bones and I loved I love her too. And of course, of course Rosanne is is, she is a support group leader for Judy Cornish is a program called The Dawn Method, which is Dementia Alzheimer's Wellness Network. It's it's a whole different framework of how you look at dementia, how we process it. It's incredible. It's it's forward thinking and it's correct, it makes sense. So Rosanne lost her mother with Alzheimer's a little over a year ago. So she's been on the other side, prepping me for this in such a phenomenal way. I just wish for all of you to have somebody like Rosanne in your life and who will be there for you and laugh when you need to laugh and cry when you need to cry and be strong and frickin psychic. She's psychic. Like why I'm like literally having like a bad moment walking to my car and I get a text. Are you okay? I'm telling you there's something

Don Priess: 10:17

It's called being a stalker.

Susie Singer Carter: 10:24

Anyway, without further ado, let me let me let me bring on introduce St. Rosanne. Corcoran.

Don Priess: 10:35

Greetings, Rosanne.

Rosanne Corcoran: 10:38

Greetings. Thank you. I'm blushing. Thank you. Oh, my goodness. That's quite an intro. Thank you, Susie. Thank you.

Susie Singer Carter: 10:44

You're so welcome and real and true.

Rosanne Corcoran: 10:47

Well, thank you. Thank you.

Don Priess: 10:47

I have to thank you because I was trying to and this is part of the thing we're going to talk about today. I didn't know how to do what I think I needed to do for Susie. And because you've gone through it already because of the person you are. Ill you know your your value is third through the roof for both Susie and me and to me too, and

Rosanne Corcoran: 11:13

thank you. Yeah, thank

Susie Singer Carter: 11:14

you know, you're part of the family, you are our family. Thank you, you know? Yeah, go on.

Rosanne Corcoran: 11:21

No, I was gonna say it was I mean, I'm, I'm, it was an honor for me to be with you to go through that process. It's not an easy thing to do. And it's not. It doesn't, it doesn't make you feel good. It doesn't there's nothing pot like, you know, it's panic. And I it was an honor for me. And, you know, I thank you just thank you guys. We're great. So thank you.

Susie Singer Carter: 11:49

Well, you know, we get we get angels when you need them. And I am not ewie-ew but I want to be ewie-ew I wish I was more ewie-ew . But we do get angels just at the right time. And you know, like I said Roseanne, and Judy, and then another one of our colleagues, Trish lob who, who to almost two years ago was a guest on our on our podcast and told me, You're going to be fine. By the time your mom she's dead, I'm promise you, it's gonna be one of the most beautiful experiences you've ever experienced. And I was like she this lady's wackadoo. Like, I'm jumping in the grave with my mom when this happens. And she doesn't know who she's talking to. And lo and behold, it's one of the most ethereal, like moments of my life, like what happened, how it all played out? Finally, ultimately, but that's not to say I am not bone tired and exhausted from the past 16 years. I mean, bone tired, so we'll get into it. So yeah, and when when I decided to do this episode, I wanted Of course, Rosanne because she's, she is a year into this. And, you know, it is so, so different still, like when I was doing research and was sharing it with her. And she was like, that that's exactly what I've been going through, I didn't have a name for it. And, you know, when you're going through all those feelings and all those emotions, like, you, you just, it's too much. It's too much to even think about researching or am I normal? Or is this right and, and there's judgment and people, you know, expectations? And yeah, there's there's, there's a lot of lovely things, then there's a lot of hard, you know, things that you have to insulate from so Oh, serious talking to me. I don't know why. He's very, he's very needy. My Siri? See, he's working on it. He's just said that he's working on it. Keep working on that. Okay.

Don Priess: 14:01

And, you know, one of the things Wow, okay, shut him up. Wow.

Susie Singer Carter: 14:07

I'm trying to but I'm trying to like close it down. Okay. Okay.

Don Priess: 14:13

You know, one of the things and we'll cover this, I think coming up is that when you're going through whatever you're going through, you think you're the only one you think you know, because everyone is unique in their relationship with their their family member or friend, whatever it is unique. Yet, it manifests in a very, very same way for and there's reasons for that. And that's what we're going to talk about today and the different stages.

Susie Singer Carter: 14:39

And also, I want to just preface that, you know, in addition to grieving for someone with Alzheimer's, Rosanne, and I share a , you know, our own unique relationships with our mothers, where not only were we their caregivers, they were our best friends, and We adored our mothers, we adore our mothers, we still adore them. And you know, there are those situations and times where, you know, it's a different frame where someone is, hasn't had the best relationship and his work and is you know, and that that really changes how you go into caregiving if you go into caregiving, and how you feel about the whole process, and when they pass away, depending on if you are able to tie things up in time. So we're talking about it from this, this perspective. And we acknowledge that there are other perspectives in this type of grief. But at the core, there's still a lot of the sameness as a caregiver for anybody with this disease. So today we're calling this dementia grief Passover, we're going to handle them just like a Passover. Because it's that big of a that's that big of a topic. So grab some coffee or a drink or some I don't know Kabuto Whatever. But it's, it's going to be worth it, you're going to want to know all this information. So honestly, you know, if you need to shut us off and come back do come back. So we're going to talk about this. And we're going to like if you haven't been to a Seder, we're going to do it similar to a Seder. And so we'll we'll you know, the oldest male that would be Don.

Don Priess: 16:36

We're going to share, we'll get a pass it and then we didn't, you know, another part and another part and what we do, in hopes that your grief passes over. Thank you.

Rosanne Corcoran: 16:46

I have never been to a Seder.

Don Priess: 16:48

But now you have.

Rosanne Corcoran: 16:49

I've been to a Sunday Italian dinner. So

Don Priess: 16:51

yeah, there's less food in this Seder, there's less food than in the other kind, but

Rosanne Corcoran: 16:56

gotcha, right,

Don Priess: 16:58

you'll get a sense.

Susie Singer Carter: 16:59

What is dementia grief? Don, why don't you tell us what it is?

Don Priess: 17:03

Okay, so I'm gonna give you a brief overview of dementia grief and how it differs from normal grief, Alzheimer's disease and other types of dementia, our unique disease processes, in that the person with the disease dies, what is referred to by Alzheimer's families as two deaths, the slow psychological receding of the person they know over the years, and eventually the physical death. Some caregivers of a person with dementia find that they have grieved the loss of a person for so long, that they don't have strong feelings of grief when the person dies. Others do experience a range of emotional reactions that might include feeling numb denial of the situation, shock and pain, even when the death was expected relief for both the person and the person who has dementia. And the caregiver. There's guilt or sadness, there's feelings of isolation, and a sense of lack of purpose.

Susie Singer Carter: 17:58

That's a lot to unpack.

Don Priess: 18:00

There's a lot, there's a lot, okay.

Susie Singer Carter: 18:02

So there are three, there's three different kinds of grief that that we as caregivers go through, and experience either 123 All of them at the same time and or, you know, some combination there of so I'm going to talk about the three kinds of loss that we feel right. There's several essential characteristics of grief that are associated with Alzheimer's and or any kind of dementia that occur at the same time. And that's this is this is what sets this experience of grief, apart from what they call common grief. And that's not to minimalize anyone else's grief, that grief is grief, and grief sucks. So, and these elements are as followed their first kind of, of loss. And I really related to all of these, the first is called a compounded loss. And that loss occurs in Alzheimer's disease, there's so many losses, you have loss of memories and identifying traits, the loss of the person's self, their ability to drive and cook and, and make their own decisions, right, sometimes it's really slow, and then all of a sudden, you can get a flurry of changes that happen, where you're suddenly taking on a bunch of responsibilities that you weren't prepared to yet, or you you didn't even know you had to. You know, I remember I remember okay, this is going to be very personal. I remember the first time when my mom was incontinent, and I had taken her to a family dinner, and I had to take her to the restroom. And I hadn't dealt with that. incontinence, that was the first time the role switched at that point. In such a such an obvious way. I remember that being daunting to me and not being prepared for it. When you embrace it, you go okay, this is this is lovely. What I'm doing for my mom, this is to make her feel okay, and still have her dignity, to have her own daughter, be there for her and nobody, nobody else when I can. So it became it, I looked at it differently. But that takes the time it takes we don't know this is going to happen when we're growing up. But when we have spitfire moms like you and I have Rosanne right and Don, we have moms that are like you know, Buh-bye... doing this, go in here, Hello World, I'm the on the life of the party. Right? And then and then you know, then they are they're starting to their dignity is or their frame of social dignity is beginning to chip away

Don Priess: 20:39

but it may not serve their dignity either the fact that their child is doing this for them, some of that some people may not want that they would rather have a stranger do it for them and and so that's hard tufton to get navigate. If that is the situation that is a reality also,

Susie Singer Carter: 20:56

All those changes. So it's like like, Don once said, it's like Whack-a-Mole. That's where you know, you feel like you're playing whack-a -mole at all times. Because just when you get that thing that you Change handled bang, then another change comes up, it goes on them. And then it's going so fast sometimes. And that's that's the concept of I think, compounded loss is this constant change, you're in change, you're in change, it's changing. And you can't, you can barely keep up with that. So you have to really figure out a way to just expect change, and expect that you're not going to know exactly what that change is. Right? Exactly. yourself that you're not going to know. Yeah,

Rosanne Corcoran: 21:41

Yeah. And you're going to deal with it when it comes up. And that's the challenge of dementia and Alzheimer's is to try to plan for the future, but not be stuck in the future and not be stuck in the past and be right in the present. And that's part of the challenge, because it's hard, because you need to plan but you can't, you can't stay over there. Because it makes you crazy. Sometimes it makes you like, Well, how am I going to do this, what is going to happen? You have to be here, because here is where your person is? And here, right? Where you're going to make that connection.

Don Priess: 22:10

And planning may get you you don't know what you're planning for... you have no idea because you know what's next,

Rosanne Corcoran: 22:16

Yes, that's right,

Susie Singer Carter: 22:17

Exactly. You don't know what's next. And also sometimes some, some solutions that you think might be helpful, can fail miserably. And so and you have to also realize that you can't take that personally. And that's hard. You know, I remember when I made the this awesome book for my mom, in the early middle stages when she was living with me for you know, an apple book with and I scanned everything from all of her scrapbooks and all her family photos, and I made it the story of lovey, right. And my mom, like we looked at it maybe once or twice, and it was like she couldn't concentrate on it. It was like, and she liked it when I showed it to her, but she's not going to remember to pick it up. No, she wasn't going to remember that it was even there. Because every time I showed it to her, she goes, Oh, you made this. This is awesome.

Don Priess: 23:17

Which was your reason for making it you've you said, Oh, I'm going to do this. And now I'm gonna get this result.

Susie Singer Carter: 23:23

Right. So you have to change your expectations. I tell my daughters that all the time, you cannot live your life, doing things and then expecting a result because 90% of the time, maybe 99% of the time, you're going to be disappointed you're setting yourself up for disappointment. So especially in dementia and Alzheimer's care, right?

Rosanne Corcoran: 23:44

Yeah, just gotta go. Just gotta go with it,

Don Priess: 23:47

Which causes stress and grief that causes you to be disappointed that that causes more stress. And then you may be making your next decision based off of that, right? And it is that Whack a Mole . you're chasing, I'll do that, then I'll do the end. And

Susie Singer Carter: 24:02

then you could get to the point, you know, which I can see if you're exhausted is like, well, what's the point? Nothing seems you know, I don't know what works. And maybe nothing does work. Maybe it's just something that you know, maybe it your your person requires something completely different. And maybe you just have to see and look and see what works for them.

Rosanne Corcoran: 24:27

And sometimes it's not a matter of doing something of doing Yes, sometimes it's a matter of being and sometimes just being there is what? That's it. That's the magic.

Susie Singer Carter: 24:37

That is the magic. 100%. Yep.

Don Priess: 24:41

Because if they don't understand or remember anything else, they just know that they're not alone. Exactly. When you're there. They know because because you're right in front of them, even if they don't know who you are. Exactly. You know, even if they forgotten who you are. They know.

Rosanne Corcoran: 24:55

I mean, yeah, absolutely.

Susie Singer Carter: 24:58

And and if you there enough, you will see them and they will see you. Well, that's not the gift of that. That is the gift my mother say well,

Rosanne Corcoran: 25:09

they will and my mother said to my sister one time you see her and my sister was like, yeah, and she was like, I feel like I know her really well. Yeah, I'm like, yeah, yeah. I mean, what more can you what more can you ask for it that? Oh, you know, yeah.

Susie Singer Carter: 25:24

I know. That's that that's the gifts you get. And I know God, I have no idea because my mom started losing her speech, right, like five months ago. And but two and a half months ago, out of nowhere, she just said I love you. Oh, I don't know. And hopefully maybe she thought she knew I was Suze. I'm pretty sure she knew it was me, but maybe not me in the way that I think of me. Whatever the case may be. She it could have been that nutty nut job girl that comes in and doesn't shut up. Yeah comes razzmatazz. dancing and singing. Oh my god. I'm gonna be tired when she leaves but I like her. And, and she brings me juice. Exactly.

Don Priess: 26:14

And, and and those were the last words she said. She said that, you know, that was two to three months ago though she said it clear as day. She hadn't been speaking before that she didn't speak again after that. And she said that I think she'd do.

Rosanne Corcoran: 26:30

I think so

Susie Singer Carter: 26:31

I'm gonna say, I'll go with that. Totally, go with it. I'm going with it.

Don Priess: 26:36

Now, Did you are you sure she's gonna click, she might have just said I love juice. But I don't know. It make that might have been what she said. Just a thought.

Susie Singer Carter: 26:47

Cry emoji. Alright, so the second time type of loss is called Ambiguous Loss. And that refers to a significant loss that is lacking and clarity. So it's, it's kind of what we're talking about. But it's defining it even further, where you it's something that you're losing, but you don't have a normal sense of closure with it. So it's broken down into into two types of ambiguous loss. And the first one is where somebody is physically absent, but remain psychologically present. And I, I immediately go to my ex husband who just left and abandoned and I say that that is an ambiguous loss, because there is no closure, there will never be closure. And they call it you know, they call it leaving without saying goodbye. Yeah. And that some of the examples are divorce, or a child of divorce, what they experience prisoners of war people who are missing in action, victims of disasters, where, where there just simply is no possibility for closure. Yeah, so that that is, that's a horrible kind of loss, because there's

Don Priess: 28:07

Where they Yeah, where they can't find the body, there is no body to bury, it's just,

Susie Singer Carter: 28:11

They're gone.

Don Priess: 28:12

they're gone.

Susie Singer Carter: 28:12

So there is there's no closure. And then it also, it relates very specifically to Alzheimer's as well, which I'll explain in a second. The second type of ambiguous loss is when the your person remains physically present, but they're psychlogically absent. And that's the goodbye without leaving. And that's what really relates to dementia and Alzheimer's, because they're, they're here, but who we knew is gone. So we keep reading, we keep re read meeting this person, and then having to meet them where at where they're at. And that's the hard part. Because even if we are open and accepting Rosanne like you were and it's still difficult, you know, it's still it still puts you on that liminal threshold where you go, Okay. What do I need now? Okay, got it. You know, and, and it's freaking hard, it is hard. And it's, it's, it's in that in, they really say that this is prominently, something that you find in Alzheimer's disease, it's difficult to grieve someone who no longer is who's no longer psychologically present, like a spouse, I always think of a spouse how hard that must be, you know, all the other. And I talked to people that are losing their spouse, the intimacy and all those other, you know, elements that play into your relationship. And, and, and those, those unspoken communications that only you to share that right, get lost. that's those are sad moments. You know, so a parent, a companion and being intimate who, someone who remains physically present with who has ever increasing needs for care that has to be met. So you're losing, and then you're having to step up even further. And, and since the person with this disease usually changes gradually, I'll be they do change quickly, but it's also gradual, it's not possible for family members to determine a specific point at which point their loved one is no longer who they once were at that point. That makes sense, right? So it's hard sometimes it is gradual. And, and I remember Leeza Gibbons saying to me when I had lunch with her when I was my mom was first diagnosed and we were met. We were introduced through a mutual friend, and she said, Your mom is going to change. Before you know it. Take video, take pictures, because it feels like she's never going to change and then suddenly, she's changed. And I remember driving home that day going, she's wrong. My mom she's not had to change like, that's her mom. Yeah, no, it happens. And and I'm so grateful for Louise's advice, and, and she couldn't have been more correct. I mean, it is it's that kind of thing where right before you just go Wait, oh, you know, just I remember asking my mom, do you know what day it is? No, I don't know. And you're like, Okay, good. There's, you know, and those were the very beginning stages, but it was like, you know, and you learn, you learn how to deal with it.

Don Priess: 31:43

And you think you can, and as you've experienced, you think you can overcome it, you think you can talk them into knowing it again, and teach them and all those things and then you realize that that's that makes the loss even harder. You know, that makes it that's before the lean in state. That's, that's a natural way to go. It's like, no, I'll just remind you, they'll know.

Susie Singer Carter: 32:06

ours will be different. I can fix this. Yeah, yeah. Yeah. Yeah, we're the other people didn't really try. I got your back mom. I told her. We're gonna we're gonna kick we're

Rosanne Corcoran: 32:19

I'm gonna figure this out. Yeah, yeah. No. Well, and I think to part of it, the heart, the really hard part is that loss of speech. Because you don't have that back and forth. And it makes it so much harder.

Susie Singer Carter: 32:37

It doesn't to you. Yes, go ahead. No, no, no, I agree with you. I think that that is, that is one of the biggest setbacks that we have the or handicaps that we have as caregivers, because we don't have the luxury of being able to speak to our person. Even like, especially even at into life, where there's such big questions and such a responsibility on you as the caregiver, which I experienced of making all these decisions without really knowing if, if my mom's in pain, if my mom would like to check out if my mom is hungry, if she's this, it's so difficult to, to navigate and, and we look, I learned a language I learned, you know, nonverbal language with her and I know, you know, that it exists, it exists with mothers and babies. That's how we communicate, we don't communicate, they don't speak. But we know, we know. We know it's there we can we can do that you can you just have to allow yourself to and believe that, you know that that that you can do you have those intuitions if you love this person? Or if you're just a person with empathy, you're going to see you'll you'll see the signs. You know it there? It's not they're human beings. Yep. So babies don't speak but they feel pain and they feel joy. And people with dementia may not speak but they feel pain and they feel joy. And they can communicate it.

Don Priess: 34:15

Yeah, I mean, yeah. And the babies, you know, they'll, they'll come in sometimes communicate with a cry, or this or that. And you start learning the language. You start learning the subtleties of a look. Or and I think even your daughter, I think Joey said, Mom, you're so much more in tune than anyone with her that you see things we don't you see a little something in her eye or look at this, that that you know what that is we don't and it's it's, you know, creating a new language.

Susie Singer Carter: 34:48

true, it's beautiful. It's beautiful. I would see her eyes. I could see a smile in her eyes. I could see the pain in her eyes. Yep. I could see when she was swooning to the music, or laughing at me. Right. And, and then and I was like, I felt like I really did feel like Wonder Woman. Just to myself, nobody else just I felt so happy that I could that I had. I thought that that chasm.

Rosanne Corcoran: 35:18

Yep.

Don Priess: 35:20

Yep. Yeah. I mean, it's and you know, it can it comes from a hand squeeze or this or that. You just know what that means. And it's, I mean, it this is very difficult, though, because especially towards the end of life, even if they have a directive. You don't know if maybe they changed their mind. Maybe they don't want that and anymore and within with this with Alzheimer's, dementia, they can never tell you that ever again. So you it puts the burden on you to make those decisions. And I know that was a large point of stress for you, Susie, during you know, during the last six months specifically. And I don't know what there's no solution for that yet. So now you have to learn how to manage it and how to internally manage it. But of course, it was

Susie Singer Carter: 36:12

challenging. It's it's the challenge go on Rosanne ,what we're you going say.

Rosanne Corcoran: 36:16

No and that's what leads to more grief in the after. Yes. Because yes, you didn't have that conversation because you couldn't have that conversation because you couldn't say, Mom, this is what you want, like, there was none of that. And then starts playing in your mind after the fact.

Susie Singer Carter: 36:32

That's what so that's, I agree. I mean, that is exactly that. If I had to say what was the hardest part for me, it was making that decision to finally go into hospice and allow her to, to exit. And I had, but I had to be sure that she was ready. I had to know that because my mom loved to live. And my mom up until a month ago was living was even in the shitty state that she was in. You know, she, she was getting joy out of life when when the family was there. And it should have been a lot different. But that's a whole nother show. But I know my mom wasn't I know when she was ready. Yeah, I think I do. I mean, I That's why I had to work so hard. I had to work hard to because yeah, and my mom, by the way, we I've said this before, when when she was in her, you know, full glory, she would say Susie, like, I don't want to go into any of this. I've had a great life, done it all, dee-dee-dee-dee-dee. And you know, and, and I always say I always thought, okay, and then when we got there, my mom wasn't the same woman anymore. She didn't have that bravado of being younger, and being able to say that. And I would say to my mom, how're you doing today, Mommy? Like, right in the smack middle of Alzheimer's, and she'd go on great. I'm alive. And I thought she didn't want to die. She doesn't want to die. And this is the other lady. This is who, you know, as all of the layers start peeling away. They become their core. And what if she just looked at me and said, not good, because that's why I always checked in with her. I always would say how are you today? Because I was looking for the sign. Yeah, I was looking for

Don Priess: 38:31

the opposite to Yeah, yeah. And he'd go the opposite to like, you know, some people say, do everything you can to keep me alive forever. And then but you have no idea if they're like going -

Susie Singer Carter: 38:43

Except for this! Except for this!

Rosanne Corcoran: 38:46

I didn't mean that.

Susie Singer Carter: 38:47

yeah, I did. I forgot to include. Like, like, like, Don's mother literally has a directive that is like, she just like, like, ever take

Don Priess: 39:00

Keep me alive. Keep me alive. But but the thing is, you don't know what then towards the end, because especially they can't even tell you if they're in pain short of you know, if they're really in wailing pain, they might just be please stop this. And it's such a burden. It's such a burden. And, you know, you know, in our society, we don't have that.option.

Susie Singer Carter: 39:25

But it doesn't, but it doesn't solve the problem, Don, of the of the of the, of the decision does that burden on people because of caregivers that can't speak to communicate with their, you know, with verbally with their person, that that is such a source of of stress and and sadness? And and , it's a heavy responsibility. And I kept trying to tell the doctors and the hospice people, it's like, I You're asking me to make a decision that I can't make fully until I know exactly where she is. I have to be there. I have to see her. I can't You're asking me to I can't put my dog down. I'm not going to just willy nilly make a decision for someone. Yeah,

Don Priess: 40:12

so yeah, let's just end it. Yeah. Right. And especially during COVID, you would have you were not able to, you want to actually do you couldn't be in the room with her. How could you even you couldn't do it over zoom. And

Susie Singer Carter: 40:24

that's why i That's why I had her at full code for so long, because I wasn't that I wanted them to, you know, keep her alive with extraordinary... yeah, with, you know, I didn't want her on a ventilator for the rest of her life. But I wanted to be the one to make a decision. I didn't want someone else to make the decision and say, well, she life support so we took her off, because that was her directive. Not when everybody's different.

Don Priess: 40:55

Well, and that is Yeah. And that is the so that's the difference between Alzheimer's and normal caregiving there. That's probably

Susie Singer Carter: 41:05

I want to add some humor. So, Don... Why don't you do it? Why don't you tell this tell a quick story. This is a quickest, and it really it really illustrates the difference between caregiving for someone with dementia at end of life and someone that doesn't. Esther, our friend's mother, who was a spitfire like our mother's, but didn't have dementia.

Don Priess: 41:29

Yes, very, very similar. Didn't have full it mind was fully their full pop. But she had cancer and she was very ill. And you know, they it was long, a long road. And finally towards the very end, you know, they said, Okay, you know, we're you're you're basically you got an hour you say she

Susie Singer Carter: 41:50

She wanted it. She decided. She was, "no more..."

Don Priess: 41:53

She wanted it. She was like, she was like, I'm done. Don't give me anything. Take me off all this stuff. And they said, Okay, you're gonna probably be asked how long she finally said their goodbyes. She said said about an hour. They family said their goodbyes. Only your husband stayed. And he stayed with her. And you know, just when and it's an hour. She's still alive. Ours is now two hours still alive. Three hours later, the doctor comes in. and she goes, "When the fuck am I gonna die already? You said it was an hour. It's been? What am I going? It's been three hours what hell's going on?

Susie Singer Carter: 42:37

She's just as Esther, that is sent to a to a tee. And you know, I can't imagine my mom doing that if she had her in her right mind.

Don Priess: 42:48

That's the difference.

Susie Singer Carter: 42:49

That's the difference.

Don Priess: 42:50

You know, where where that. That's the difference on the effect of the caregiver.

Susie Singer Carter: 42:54

And that's the gift. A gift she gave the family was like, I am ready family. Family didn't want to let her go, by the way. Family was not happy about it. Yeah. And so you can imagine the weight that they that she was able to to take away from her family by saying that?

Don Priess: 43:15

Rosanne , because--what was your experience at

Rosanne Corcoran: 43:15

It was a week turnaround. The Wednesday before the end? Did you know? she passed, I think she had a little stroke. And Saturday, she was in a lot of pain. And when I called hospice, they said, you know, give morphine and I was like, Oh God, I Oh, I mean, I, I got the morphine and I, I stood downstairs and I thought this I was going to kill her. Like that's what I thought I thought I was going to give her the morphine and she was going to die. And I was in a panic. And I remember coming up and I said to her, she was awake. And I said, Mom, you're in this pain. If I give you this, it's probably going to help you but it might knock you out. Do you want it? And she nodded her head. And I thought well, thank God, because I didn't know what what to do. I mean, I was I was full out in a panic. And I gave her the morphine. She did not die. It didn't help her pain. And we went like this for another five days. And then she, she couldn't get comfortable. She was she got into a position. She was stuck in that position. I couldn't move her. When the hospice nurse came and we turned her over her blood pressure had dropped her pulse rate had dropped. And I thought I was I was looking at the counter and I thought it said 52 It said 25. And the hospice nurse said, Roseanne she's dying. And I was like, wait, what, like, hold on. She was just waiting. I you know, called on my siblings. And that's I mean, by the end of the night, then, you know, five hours later, she was gone. But that's where it was. It was a shock. Like I said, I just I didn't know how long we were gonna go on. I didn't know how long this was going to be. But I certainly didn't expect it that right. Yeah, you know, and she had lost her stage. She had lost her speech three weeks before, but we were still communicating because like you said, Susie, you know, you're you're able to

Susie Singer Carter: 45:19

Yeah, more than more than most situations. communicate eyes do 1000 things. And but, sure, I don't know what I would have done. Had she not said yes, she wanted the morphine that first time. And then I felt that open the door. That was permission then for me to continue to give her that morphine right that did not, did not touch her pain. So but I know that if I wouldn't have and then right? something would have happened if she wouldn't have said yes. And I gave it to her and she did die. I would have never been able to forgive myself, even though there was no going backwards. And I think that's the part where as caregivers we get caught up with that like, well I did this and they died No, no, no, they were dying. You know, you're, you're trying to be with them in this moment, where this is the end of their life, it doesn't matter what you do, this is the end of their life. But as caregivers because we're caring, and we're doing, and we're in charge, we carry that then for the rest of our lives thinking, well, what didn't? Did I not see something? Could I have done this better? What if I would have done something sooner? And those are those what ifs. That then add to your grief. When in reality, you were there. You were the person you were caring for them. Yeah, in. In any other situation, I mean, that it flows really well into the third and final type of grief, which is Anticipatory Grief, which we experience nonstop. So you know, I'll read this to mean our parents can start before they die. anticipatory grief is a natural form of grieving that occurs before a loss happened and other kinds of diseases because it's told they have terminal cancer, there's a bit of an anticipatory grief. But we have it, because we don't know because we can't communicate. So it can, it can precede the loss of a job, a house and marriage, a dream, but often occurs, the loved one is stolen by aging or disease, the anticipatory grief causes you to mourn the person that they were all the things that they missed, or are going to miss, I had that my daughter's pregnant again, and I thought, If only she could hang on. So there, you know, and I was then I was thinking, is that selfish of me, there's just so many things that play into it. And it also gives you this feeling of impotence. Like you said, there's nothing we can do. There's no going back. Yeah, what do you mean? And you know, it's coming. And you know, you just don't know exactly how or when you didn't know exactly, you were like, what, it's what today, right? Even doesn't matter. Like it's like we're so there with them. And we went home at three in the morning to get a couple hours sleep and like think the nurse called me to tell me that my mom, her blood pressure had dropped and I just dropped everything and wrath, but I didn't know it. No idea. We know that my mum went through this five months ago, we thought she was going to die then. So those things happen with Alzheimer's. So there's so much anticipatory grief and that you are in a constant state of adrenaline

Don Priess: 48:50

Which makes it really hard to function in your everyday life, you how can you function, that's, that's all that you're thinking about. Because you're in you are, you are, just and especially likes you Susie, you know, your father passed in a very, very different way. You know, and so there was no anticipation with that, that one, you know, but the fact that he did pass that, you know, it's like, you know, you're waiting, what, what, what's going to drop next what, you know, when's the other shoe gonna drop? You, you know, because of just past experiences, and really doesn't matter what those are, you still have to deal with the fact that you don't know when it's gonna happen. And that is a that's a very sincere form of grief. You were, I remember that stage when you were in that stage. And that was, you know, which was a long time. There was a you know, it was a long time. And that was a very, you didn't know it, but you just were like, Okay, I think maybe now, I think tonight, I think tomorrow, and that's meaning all that all you're thinking about. So that's a tough one.

Rosanne Corcoran: 49:55

Yeah, and then it should be no surprise to us that in our grief, we're, we're just, you know, swirling because of all of that and all of that stress and all of the anxiety and everything. And then afterwards, it's not like you go, okay, I'm good, let's go. That's not how this works, because your body is still fighting. And that's, that's the hard part in that after that, you know, insomnia that you're still anxious, you're still exhausted. All of that comes to play I'm still not sleeping, right? 14 months later, I'm still not sleeping, right.

Don Priess: 50:34

And, and I think because some of this stuff there's you know, what, is there a solution? Is there something I can do to combat this or reverse this and in a lot of cases there isn't it is just what it is. And sometimes just the knowledge of it, that you know it exists, so you don't feel like you're crazy, that it's helpful, but there really is no

Rosanne Corcoran: 50:54

It's passionate with yourself solution for a lot of this, you know, like, Okay, if you don't feel like doing something, then don't do it. If you can't put yourself out to do something, then don't like allow yourself give yourself that grace to take those moments to be okay. Do you know I, my niece had her baby shower a month after my mother died? Yes, I did not go, I couldn't go. And I, my first thought was, well, you have to go. And then I was like, I can't, I can't go, I can't, I can't interact. I don't want to be out in that in that world yet. And I didn't. But you have to allow yourself those moments. You have to allow yourself that opportunity to try to get back to some sort of center for yourself. Do you know you're allowed

Don Priess: 51:42

and that should also come without without guilt? The guilt is I think, what drives most of this stress? The fact that should i i shouldn't be laughing right now. I shouldn't be enjoying myself. I shouldn't take time for myself. And you know, you you become so selfless that it hurts you. And in the long run as the caregiver, if you're hurting as a caregiver, you're not the best caregiver you can be. So you have to try to do it without guilt and take

Rosanne Corcoran: 52:16

You have to yourself. It's a should-ectomy. You have to have a should-ectomy.

Don Priess: 52:19

You have to it's for them, too..

Rosanne Corcoran: 52:20

No more shoulds.

Susie Singer Carter: 52:21

A shit-ectomy? Yea, a should-ectomy. Yeah. should act to me. Oh, it should act to me. I think you said a shit-ectomy. We could do that, too. Let us pass the Seder book over to Rosanne, to tell us about the three states of grief,

Rosanne Corcoran: 52:36

Separation, liminality and reemergence. I never really thought about it. But it makes perfect sense. State of Separation, obviously, is a person in a state of separation when they suffer a significant loss. Each loss is experienced as a separation from the person with dementia from the life one has lived in the past and from an anticipated future. So, yeah, I mean, that's I don't think, I don't know if everybody thinks of it in that way. That it's an actual separation. Do you know, right? And it is all along the way. And it says that not only is it important that family members educate themselves on dementia, but also find a community of support, where you can share your grief honestly, with a sense of safety. And I'm fully fully support any type of support...

Susie Singer Carter: 53:31

Yes you do. You walk the talk my friend. Yes you do.

Rosanne Corcoran: 53:36

Absolutely. Because there's nothing like saying something or feeling something and actually having the courage to share that. Right, and then have somebody say, but you know, you know, we'll stop being a martyr, or, you know, I don't know why you feel that way. Well, okay. And then that adds to your own isolation. So when you find a group of people that you can that you're sharing the same thing, and you say something like, you know, I don't know, I can't believe I can't believe they're gone. Yeah, I can't believe I'm numb. Well, of course, you're numb. Yes. You're known. How could you not be numb? It's okay. You know, or, you know, I haven't cried, I haven't cried, okay. That's okay. Your your body has to catch up. Your mind has to catch up your emotions. Everything that we do as caregivers, you just keep going and things get piled on top, you don't have time to deal with what you're seeing what you're feeling and what you're what you're witness as a witness even, you don't have time to, you know, process that. Yeah. And then it's at the end, and you're like, Wow, well, I didn't process all that stuff. Well, it's still inside of you. You know.

Susie Singer Carter: 54:45

100% Yeah.

Rosanne Corcoran: 54:47

And it's, it's just, it's hard. It's all part of it.

Susie Singer Carter: 54:50

It's yeah. And when you're caregiving, like you said, you're in it, you're in the race. You're in the race, you're sweating. You got you got blisters, you've got Ian, right. You're, you're just grabbing a drink, and you're, you know, you you're just making it through, and and then it's when it stops you go past the finish line, and then you feel triumphant. I felt triumphant. I didn't feel joy. I felt triumph. And, and, but I have I, God knows I have no relationship to what my emotions are right now. Because I've just been trying to get everything done, right. Yes. Before and after.

Rosanne Corcoran: 55:36

Yes, yes. And you're separate. It's almost like you're separate from your body.

Susie Singer Carter: 55:42

Yeah, and and, you know, most some people are lucky they have a really good support system in terms of family members. Some of us are only children I'm I have I'm like an only child even though I have a sibling. And I know I'm not alone in that. And so that can add even more stress to it, especially during the post. Death and the pre funeral stay Ah, and all that stuff, it can only add to your, your stress level and your anxiety because now you're dealing with things that you really don't want to deal with that are real, either super painful or just super, super stressful. And it you know, it takes a lot. Right?

Rosanne Corcoran: 56:27

And it's okay, if you don't have those people in your life, you can find, yeah, you know, you can find them. Because you have to, it's important.

Don Priess: 56:35

Yeah. It is important, and sometimes those people cannot be or the people closest to you. Because a they might be also, you know, future family members, they can be, you know, going through their own thing. If it's a friend, like me or other friends, you know, they may not even if they've they've done research and you know, all that stuff, they've never experienced it themselves, let's say, they don't know what to say, you know, I've often wanted to just say, What do you want to hear right now? What would make you feel better, because sometimes people say stuff that seems caring, and it's just annoying. Give us an example. They're they're in a better, they're in a better, you know, that it's all it's not suffering, you get all those things that may be true, but it's not what you want to hear. And so that's difficult and to find people who have gone through it before at least they and everyone's different. They might, they might have a clue as to what's the best thing to say and maybe more importantly, what not to say,

Rosanne Corcoran: 57:38

Right, right. Nothing that starts with because I can start with at least

Susie Singer Carter: 57:44

Oh, yeah,

Rosanne Corcoran: 57:45

Cross that out? Well,

Don Priess: 57:46

Yeah, well, at least she's not...

Rosanne Corcoran: 57:48

At least she was 92.

Susie Singer Carter: 57:50

I know.

Don Priess: 57:51

Oh, yeah. She had a good long life,

Rosanne Corcoran: 57:54

Yea .No "at least",

Don Priess: 57:56

You know, that's a blessing,you know, and all of it's true. It's true, but it's not what you want to hear.

Rosanne Corcoran: 58:01

It's not it's not the time for platitudes.

Susie Singer Carter: 58:04

Exactly. And also, again, uniquely to and maybe not, maybe not so uniquely to Alzheimer's and dementia, but you know, we have a medical system that is broken. So, you know, a lot of people were, yeah, they they're in a better place, but not of their own doing, it wasn't a natural, you know, we just we have a, we have a very faulty system. And we were left as caregivers to navigate that, as well as our person. And that, and so it's very complicated. So when you say to someone like Rosanne or myself, or any one of you out there, well, they're in a better place. It does. It does trigger a lot of things for me when someone says that, because what I want to go into is, well, actually, let me tell you a story. Two hours later, right?

Don Priess: 59:06

And, and you're on that path, you're on that path now and Rosanne might have been on a different path, you know, and that and so I have a question here that for both of you, which is Susie, you're three weeks, three weeks out, since and Rosanne, you're a year and

Rosanne Corcoran: 59:20

14 months out.

Don Priess: 59:22

Okay. So I don't know if you remember what three weeks out felt like? What would you want to hear? What would make you feel better.

Rosanne Corcoran: 59:31

I am here. If you want to talk, you can talk, if you want to talk and have me answer, I will do that. If you want to take a walk, if you want to sit if you want to do whatever I am here and will do whatever you want me to do. And if that means sitting here, and you sit there, so be it. Just just an open, just an openness. And not a well, you know, you have to do this. Well, you know, you should be doing No, no, no, I'm lucky. I'm standing. I'm lucky, right. I can make it through my day. And I mean, I was in bed at 6:30, three weeks

after I was in bed at 6: 1:00:10

30. I wasn't sleeping, but I was in bed like because I just it was like Oh, my goodness, what has happened? Yeah. Yeah.

Don Priess: 1:00:20

And a year and over a year later do those words still? Would that still be what you want to hear?

Rosanne Corcoran: 1:00:25

It's different because you know, you know, everybody's like, hey, it's a year you better you feel good? Isn't a great? It's like no, I don't and it's Listen, I'm not where I was at week 3 - 12 months later, I'm I've gone through that time. And it's not that it's better. It's different. So it's not I don't run I don't think I'm going to run up the steps to tell my mother something. I don't you know, pull in the driveway and think Oh, I could I don't that's not there anymore. But it was right. And it's it was hard. Now I'm trying to now it's like okay, Rosanne, what do you want to do with your life? What do you want to do going forward? Because it's different. And while I was caregiving, you know, my, my kids grew up, they grew up, they grew out. And yeah, you know, life goes on. And then it's like, you know, you say to your husband, oh, hey, I remember you, did you want to do something you want to go out? Because you didn't have that? So it's a complete relearning. And right, and it takes it takes a little bit, you know, right.

Don Priess: 1:01:37

As you do your relationships with everybody change every area, and you have to re establish those, Susie, so you're three weeks out, and you're in a very different state of mind that Rosanne was in. She was in bed by 6:30. You don't do that...

Rosanne Corcoran: 1:01:54

I wasn't asleep. I was just in bed,

Don Priess: 1:01:56

... because you always have something going. So at that stage, or I mean, take it from the time right after it happened to now what what do you want to hear? What would make you feel better? Is it the same? Or is it something different?

Susie Singer Carter: 1:02:11

Yes. And I know what I know, just having people to share a bit of what's happened to through this journey is helpful. It helps me process it just been able to talk about it, just to get it out, and verbalize it articulate it. You know, the last, like I said, the last six months or so harrowing and grueling that anybody that will listen to my story, I feel very cathartic, and it feels good to share it. And I guess it gives me a sense of purpose, you know, to continue advocating in a way that gives me it continues to support what I've been doing. So that makes sense to me. So that feels good. And then I feel I also feel guilty sometimes because I and I always want to make sure that I'm not dismissing the people that I love to I want to I want them to know that I'm here for them. I'm not. I'm not fragile. I'm, I'm in I'm I'm heartbroken. But I'm not fragile, and I am here if you if you need me, I'm here. That's helpful. To be helpful. Yeah. Well, that gives you purpose. Yeah, it gives you I want to be that for other people. And it's you know, I continued, that's just part of who I am. So I don't want people to treat me like, I'm fragile. Like I said, That's it. Yeah. So I and I love everything that Rosanne said to you and I think they're I don't I I don't appreciate anybody minimizing the situation because of someone's age or because of their disease. You know, and I find that I find that clumsy. So that's the only thing I would say is don't minimize. Don't, don't say, hey, are they had Alzheimer's? Yeah. Wow. Because I remember one time I had a friend who said, "I" I hope not!

Rosanne Corcoran: 1:04:27

Wow.

Don Priess: 1:04:27

I mean, and it's just because people don't they don't know what to say. And they do think they don't and and I guess as Do you have it in your in your being to forgive them for those types of things?

Susie Singer Carter: 1:04:41

I have.

Don Priess: 1:04:41

You know, yeah, I mean, so what I'm doing is kind of, you know, for our for our listeners is, you know, because I think people just know,

Susie Singer Carter: 1:04:49

we need to educate.

Don Priess: 1:04:51

And sometimes what happens if they don't say anything? They don't say anything, because they are afraid to say the wrong thing. And

Susie Singer Carter: 1:04:59

We have that we have that? Yes. We had that at the funeral. My you know, we had someone who was close to us. I won't say it, but who didn't say anything. And they were there. And I was like, not a word. And when I thank them for coming, they were like, oh, yeah, of course. And that was it. And I that was so odd to me. And then you know, you, you realize after you you process of that, and and you realize they just didn't know what to say. And they felt inept. They didn't feel that they could say anything and felt that anything they did say was going to be inappropriate.

Rosanne Corcoran: 1:05:42

Yeah. Yeah. Yeah.

Don Priess: 1:05:44

Or trite..

Susie Singer Carter: 1:05:45

And I can understand that.

Don Priess: 1:05:46

Yeah. And it's even by I mean, take it to what's current, you know, social media, you know, the comments varied so much from like, literally condolences to an emoji to like these beautiful alterations that are just spectacular. And I think, you know, that's something we should talk about. because that's very real, everyone needs to is going to be responding to the death from one of their friends family or something. Like, what do you want to read? It's kind of the same thing. Hey, if I'm hear from you, I'm here for you. If you ever want to talk, that may be what I'm hearing, the best thing to hear I

Susie Singer Carter: 1:06:24

I love when people acknowledge my mother and said, what a great lady she was, and, and that they admired our relationship or just said what, uh, just just when they, when they, when they saw her, that made me feel good. That was like, wow, that that was so beautiful that you actually saw who she was and, and told me about that. And, and, and that's so lovely. I and even when my father passed away, I remember he was, you know, he traveled all the time because he was in the music industry. And he was installing recording studios all over the world. And I got a letter from a man I had never met from Australia that my dad had installed a studio and he wrote me a letter just to me, to tell me how wonderful my dad was and what an incredible human being and what a contribution he was to the world and that, you know, I should just just a beautiful letter that that stayed with me my whole life. Because he told me how great my dad was from an adult's person, you know, and I think those are, those are beautiful gifts. Those are flowers that you get.

Rosanne Corcoran: 1:07:37

Totally agree. Yeah, yep.

Susie Singer Carter: 1:07:40

So, so Rosanne, talk about the next state called the liminal state,

Rosanne Corcoran: 1:07:44

The liminal state. So liminal derives from the Latin word limin, which means threshold, in crossing a threshold, we move from one place or state to another, when one stands at a threshold, however, one is not in either place. liminality is a state of transition of being in between a previous situation and an emerging situation. This status of being betwixt in between is an apt description of an experience of ambiguous loss. And thus the liminal state is linked with ambiguity and the receding of the known self.

Susie Singer Carter: 1:08:18

Right, which, yeah, related to so much, cuz you said when you wouldn't when I sent you that informtion,... Talk Talk about how that that hit you.

Rosanne Corcoran: 1:08:27

I used to, I used to say that as as of for dementia, caregiving, and I would feel like, every time my mother changed, or we approach to change, it was like being in a doorway. And I would say it's a different threshold. I never knew it's a liminal state. I don't speak Latin. But that it was like an actual.

Susie Singer Carter: 1:08:45

Carpe diem! Yes you do . Carpe diem.

Rosanne Corcoran: 1:08:47

Yeah, how about that. So I would always say that it was like being it was like being in that transition. But you're not, you're not in either place. And what do you do with that? And that's part of that feeling that's part of these ambiguous feelings that we feel as Dementia Caregivers, because you don't know where to go. You don't know what's coming. You just left this area, which you're like, Wow, this is this is bad. I can't imagine and then you're like, oh, wait, we're in a new new section. And right, that's continuous. It never stops. It never stops. And that just stops. And it's hard.

Don Priess: 1:09:26

And sometimes that sometimes you don't even know that you've gone to another stage. You you because it Alzheimer's isn't literally just I mean, sometimes it's literally one day and behavior is different. Sometimes it's just as gradual, you know, sands through the hourglass and you have no idea that it's gone to another state. So you don't know what you're even dealing with our house.

Susie Singer Carter: 1:09:48

Everybody's is unique. Everybody's unique.

Rosanne Corcoran: 1:09:50

Every situation. Yep, yes. Right. And it even says, in the liminal state. The facilitating behavior that allows the grief process to further unfold is tolerating difficult emotions. The process can be hindered if painful feelings are avoided or otherwise suppressed. And consequences of this avoidance can result in unhealthy or comprehensive compulsive behaviors, such as indulging in food or alcohol, angry outbursts, chronic distracting activities, yada, yada. And that's, that's the thing. So it's like, well, I don't want to be here. So how do I get out of this feeling and who has time to address those feelings because you're putting out the next fire. And that's, that's important. And it says, you know, a sense of clarity moves naturally into states of reemergence, but at times, family members need to simply trust that eventually, through tolerating painful emotions, the grief process will unfold into clarity in the possibility of adaptation to the new emergent situation. As difficult feelings are tolerated without avoidance or suppression. A sense of clarity moves naturally into states of reemergence in which recognition of a new landscape inner and outer enables adaptation to losses. So it's like okay, well, you have to tolerate it and then move through it. And it's sometimes that's easier said than done.

Susie Singer Carter: 1:11:11

Right. But yeah, and I think I think those are those are the, those those losses all along the way, that that when they say that it's, you know, you die twice, I don't think it's that you're dying twice is that you're you there are these little deaths of that come before you you know it, you know, like when you're raising a child, there's a certain spectrum, there's a certain spectrum of normality, that normal, you know, normal development and you'll go, this is this stage, this is adolescence this is you know, whatever, and then you, but with but with Alzheimer's because everybody is so unique The way that they manifest, and because they are a human being and that, you know, this is not a normal thing. This is a disease. So it takes on, it takes it takes it's it, it presents differently for everybody, even though it's similar. So we can't predict what's going to happen. And you do have to know,

Don Priess: 1:12:14

you can't label it. Yeah, you can't label it and say, Oh, this is this. No, you can't do that. The only thing that dies really is normalcy dies. x

Susie Singer Carter: 1:12:24

Well, new normalcy... new ones are born, okay, yeah.

Don Priess: 1:12:29

But you have to create a new, you have to create a new one. And that and every moment.

Rosanne Corcoran: 1:12:33

But while you're doing this, you're exhausted every moment. You're trying to figure out how to make the best of this situation. And I feel that, that with caregiving, and with grief, it's the same type of thing, because you're trying to figure this out and go with it. You don't know what to do. You're trying to figure out the feelings you're trying to, you know, go forward. And it's that same idea. And it's the same thing with people when you're caregiving. It's like, oh, oh, you're Oh, that must be tough. Okay, well, gotta go. And it's the same thing like with grief. It's like, oh, wow, I'm really sorry. I'm out of here. And that's unfortunately, what happens because it's uncomfortable. And anything that's uncomfortable, kind of follows that, if that makes sense. Do you know what I mean? It's like, it's just, it's uncomfortable.

Susie Singer Carter: 1:13:22

We don't want to be there most most, it's usually we avoid uncomfortable situations. Right? Right. Yep. So and I think all those states from what I'm gathering from my research is that all of those states occur at different stages of this process. Rosanne? Why don't since you're a year down the line, why don't you discuss why don't you talk about these, these really, you know, manifestations, these emotional reactions that happen that are uniquely part of this process?

Rosanne Corcoran: 1:13:56

Well, I, you know, I've heard the the dying twice port aspect of dementia. And I don't know if I ever really embrace that, because there were still times my mother was fully with me. So I understand that thinking. But I never there were parts that change, there were parts of our relationship that changed. Of course they did, because they had to, but when I would sit and think, you know, when she dies, it's going to feel like this. And then it didn't. And even though our relationship and she changed over the course of her disease, when she died, it was completely different. And it wasn't like, I was like, wow, I expected this, okay, it wasn't even though I expected her to die. And I knew she was going to die. When she left, it was a smack in the face. And I was shocked. And I never thought shocked would be the word that came out of my mouth. After all of this after all of this time after, after everything that we had been through together. I never thought shock would be the thing that I felt. And I did. And that's just it's one of those things where you think you know, you don't know. You don't know. Yeah, well, and the pleasure you've been, you know, for not

Susie Singer Carter: 1:15:12

Exactly. And it's same with me with the you know, the number one on the on the list, right is feeling numb. And I thought like I said I would be in a fetal position and not able to stop crying and I I haven't cried since the day my mom passed and there and I was really worried about it. And but there's now that I'm reading up and unlearning about that numbness and why we why why it comes on it's it's it really makes so much sense it is in it's in balance with how much love I have for my mom also is how numb I feel right now because I can't possibly embrace this right now. No, I intellectually know it. I emotionally have not embraced it yet. And I and in order to function I'm I'm my my cortisol It has spiked through the roof, I think. Yeah. Which is why I'm so tired. And that's another thing. I didn't know how tired. You are from grief because I'm a I'm the Eveready Bunny I can just keep going and going, and I will. I have never wanted to sleep so much in my life and not during the day. But I mean, when I go to finally fall asleep, I just can't I I'm so deep in it. My body's like, Thank you. Yep, thank you. Shut down. only the last 16 years, but even more focused the last six months, you have been just running on adrenaline, just to get through the day, and to go into caregiver every single day and go and go and go and go and go. And it's kind of like, you know, anyone who's been done a play in the theater, you know, you work on something for six months, and you do all these performances, and you're just literally running on you're not sleeping, and then when it stops, you, you just you just your body just goes BAM, yep, yep. But but you know, so that's why you're tired. But you're now pushing through to get the arrangements done to do this, and to continue on it. And now your quest to, you know, to help others, you know, so it's no wonder you haven't had the time to just stop and cry.

Rosanne Corcoran: 1:17:26

Right? Right. And you're still even after. And I don't know, I felt this way. I was still carrying, you still had to talk to the priest had still had to get I mean, we had pre planned the funeral, but you still have to eat the flowers, you gotta get the corporate cards, and all of that. So all of that I still felt like I was still on duty, on duty yet. Still going. And I remember leaving, I remember driving home after the luncheon and thinking all now what do I do? Now what? What now I'm supposed

Don Priess: 1:18:01

to that lack of purpose. That's that lack of purpose,

Rosanne Corcoran: 1:18:03

Right. Just because for every day, and my mother lived with us. So every day, my thought was, what does she need? What can I anticipate? How do I do you know what, what logistically needs to be done, what caring needs to be done, and then trying to also have her feel loved and safe and secure,

Susie Singer Carter: 1:18:21

And balance your own life, and balance your life with your husband and your children. And if you have animals, everything yourself, and your career and your work, whatever it is, you're you're trying to do that. And and you know, everybody that's listening, that is a caregiver right now, or has been you, you totally understand that 100% Absolute, so when it stops, you're like, wait a minute, now. And it's that that item that you said, Dawn about the relief for the person with dementia and for you and for yourself in some respects, there's such a duality for me with that, because yes, I am relieved, I'm relieved that do I? Did I want to be a caregiver? Did I sign up for it was I looking forward to that, you know, fighting the system and being on on guard all the time? No, it's not a fun place to be. Dude, I love my mother and enjoyed the process. 120% up 200% I, I wouldn't have done it any other way. I would never, I miss doing it. But I also have that feeling that my mom, she was a hero she did is incredible as she could and it was time, there was nothing more and we, we, we checked off all our boxes, my mom and I, so I felt okay to let her go. And, and she needed to she needed to go. So.

Don Priess: 1:19:54

And I think that that that like, you know, feeling that you have a lack of purpose can also lead to guilt. Because, you know, then you start thinking of, you know, did I do enough to do you know, you you want to feel like he left nothing? Like you put it I put it all in which you did and I'm sure you both did. But you still have those doubts and and fears of that you didn't. And and that's yeah, I mean the amount of the amount of different things that you're you are feeling at the same time. No wonder you're tired. Yeah. Well,

Susie Singer Carter: 1:20:29

it's your parent, it's your mommy. It's when you go down to your, your core of who you are as a human being, no matter how old we are. Our mom, our mommies and daddies are our foundation, our stability. And I find it interesting that you said Roseanne you felt like you weren't losing your mom all along the way. You know, in terms of her disease, like you weren't really grieving. And I and I understand that feeling because I feel like my where my mom ended up in the last days of her life is the woman that I knew, and I wasn't grieving who are lost because people let's see In any situation, any normal, healthy situation people grow and change and get older and, and, you know, I know some people mourn for for the, you know, the glory days, but I love every day. So I didn't I didn't mourn. Every every loss my mom had, I went, I was aware of it, and I went, Okay, so we're at that stage, but I didn't love her any less. And I still loved her just as much and, and, frankly, the more skills she lost, the more I even loved her more because that that relationship changes and it switches into you becoming their rock and their foundation. And they become you switch roles. I became mommy, in a way even though she was still my mommy. But I felt such a tenderness for her and pride and like such filled with joy to see her face every time I walked in the room. So, you know, I missed that lady. I missed. I missed the old lady. I missed that I miss playing miss this lady. This is who I miss. Right? Can you see her? I missed that little face. It's so happy to see me. And you know, I miss that. I mean, our children grow. And you know, I would I love them just at the age they are now and I will continue to love each and every age. And Absolutely.

Don Priess: 1:22:33

That's the two deaths though that we were talking about when it comes to dementia and Alzheimer's. You you mourned her, you know, you're the other mom a long time ago. Yeah. And now you're mourning this right?

Susie Singer Carter: 1:22:44

So I mean it, isn't it in a way it is if you want to look at it in it, I think instead of mourning, it's to go is to just acknowledge that they're changing, just like No, I Yeah. anybody would, you know, we all change, you know, our personalities. shift a little our bodies shift a little. Not You look as I ever knew you. you Don, you look exactly the same. Shifting.

Rosanne Corcoran: 1:23:10

Shifted, shifted.

Susie Singer Carter: 1:23:12

Yeah, maybe it's just having that, that opportunity to, to lean into and surrender into my relationship with my mom gave me that, that peace of mind and and allowed me to prepare for her leaving not that it doesn't smack you in the face. Like you said, Rosanne because God knows. It's, it is. It is so primal. It's the most primal thing you'll ever feel. It's like it's the same as giving birth. To me. Absolutely. As a woman. That's what it felt it feels like.

Rosanne Corcoran: 1:23:49

Yeah, absolutely. Well, and it's acceptance to. So, you know, anytime my mother changed, it's like, okay, well, this is where we're at. And you have to go forward. You can't say, Well, I don't want to be here. Well, no kidding. You don't want to be here. She doesn't want to be that way either. But now you're you're accepting and you're moving forward. It would be it would be if one of your friends broke their leg. Okay, well, do you love them less? No, they broke their leg. Okay, well, you go with it. You have to. It's just it's part of life. This is part of life. And we have to be able to move through those times. Because that's just how it is.

Susie Singer Carter: 1:24:25

Yeah, adapt. We have to adapt.

Rosanne Corcoran: 1:24:28

Yep, absolutely.

Susie Singer Carter: 1:24:30

I found this article on feeling numb, and I thought it would be helpful for me and whoever else is feeling that way. This is what I found. feeling numb can be viewed as a mild dissociation process as a way to cope with loss numb Grievers don't react with immediate shock. Instead, they're often able to tap into this enormous energy that comes to deal with all the arrangements, the logistics, comforting other people in the family, taking on tasks in the first few days after someone passes away, you know, so you're basically insulating yourself from all the feelings that you think that you should have or that you will have to protect you in some way so that you remain functional, it can feel awful, and it just causes more stress. Thankfully, what I've discovered is it's very normal. And that makes sense to me because I love my mom's so much. And I'm heartbroken. I need to, for me process in little increments, little bits at a time and that will be the way that I can manage it better for myself.

Don Priess: 1:25:35

But it's really interesting because you know, you say your numb and you haven't been reacting everything but you also have to look at what led up to it. And because for because of the ramp, the long runway you've been on for 16 years and then the more short term runway, which is more intense. You are grieving all that time. You grieved and and I don't know if you want me to mention at the moment right after she passed, it's very personal. And but there was a massive amount of, if you want to, if you want to tell people about it or whatever I mean, you did not you were not numb, let us just say you were quite the opposite of numb. And so you have to take that into consideration also.

Susie Singer Carter: 1:26:20

Yeah, I think I said death is

Don Priess: 1:26:22

and it was also a lot because of what Roseanne told you to do at the time, which you did. And I think, you know, I don't know if you want to share that or not,

Susie Singer Carter: 1:26:32

I'll share it because I think it's beautiful. And I think that it was really what gave me a lot of closure. Because Roseanne told me as it was getting close, and I told her, I made the decision that I was going to, to allow my mom to do what she was going to do. And she said, when that happens, don't let them rush you out of the room. Take your time, whatever you want to do with your mom, it's your time. That was the best best advice I've gotten because when I when I saw she wasn't breathing, I I whipped off my shoes, we were in the middle. I had made the room beautiful. I had flowers and battery tea candles, everyone can't like candles and in a hospital. I had it going and I just jumped in with her. I took all the tubes off of her and out of her nose and and just got to hug on her love her, which I hadn't gotten to do for months, months and months just giving her like a big hug and she was warm. And she was my mom. And and I laid with her for over an hour. And I just it just was so cathartic for me. And it was such a good, good day. And I felt I would never have done that. I would I would have not even had thought I had permission to do that if you didn't. Rosanne

Don Priess: 1:28:06

Rosanne, let me ask you because you did give her that advice, because I think you'd maybe have done something similar with your mother. I feel like because that that happened that some of the let's say, I want to say lack of emotion, per se. You. I think there's a reason one of the reasons for that is because you did that, that you got to get out every I think you know, you say I didn't

Susie Singer Carter: 1:28:32

I mean she was covered. in mascara.

Don Priess: 1:28:34

She was covered. You were covered. It was I mean, and I think that type of which most people don't do. And Rosanne I want to know your thoughts if that is one of the reasons why you think maybe Susie's feeling the way she's feeling.

Rosanne Corcoran: 1:28:49

Oh, I totally because it's so it's such a I mean, they're gone. And it's such this feeling. And it's it's, I don't know, it's it's that to be able to to be able to put your hands on on her and hold her and hug her like that you weren't able to do that Susie for a long time. And to be able to do that. I mean, that's, it's a connection. It's it just is and it gives you that opportunity to say I'm, I'm with you. I'm still with you. Do you know, and it it allows that yeah, it allows that that transfer almost to be transferred to to experience

Susie Singer Carter: 1:29:36

to let her go? Yeah, I felt like after that when the moment when I said Okay, that's it. I'm done. I'm walking away. I was ready to walk away. Right. At that point. I was ready to leave her. I knew I had to I knew I had to leave his time. And I had gotten all the lovin's in that I that I'm grateful that I could do that. I felt so grateful she was she felt like my mom, from a little girl when I was would give that big bear hug to your mother and I felt her warm skin and she felt mushy and soft and lovely. And I kissed everyone you know, I kissed her face and her arms and her just I just loved her and cried. And and yeah, it was very therapeutic. very therapeutic. I think all the time. Like that is one of my most beautiful memories and I am honestly guys, I'm I've been death my whole life since I'm three years old, have run out of the bed and go I don't want to die. I don't want to die. I was so afraid of it because I didn't understand it. This was such a rites of passage for me to literally and figuratively embrace it because I love my mom so much. I didn't want to be afraid of it. I didn't want to be afraid for her. It was like Screw you death. I'm going to I'm not I'm not afraid of you. I said about mother when she died. She taught me how to live and now she's taught me how to die. And that was a beautiful gift

Don Priess: 1:31:07

Ya. And that's why I don't think that this numbness I don't really know if it's numbness, I really don't. Because of that you went through that process. And you may you may just dive into, you know, other other types of grief as you go. And you probably will. But I think this is a huge reason for it. And it's something that, you know, like you said, the most beautiful part of this whole thing was after she passed. Yeah, that's, that's huge.

Rosanne Corcoran: 1:31:34

Sometimes it's not linear.

Don Priess: 1:31:35

You know, there are some tips for coping with dementia grief. And the first is to find a community of other Alzheimer's families in support groups. There's online, because the single most important the other daughter hood, friends like Rosanne, things like that. This is the single most important coping action you can take to manage dementia grief, you need to be with people who understand your position from the inside out, and do not need you to find words to describe what you can't articulate. Because at the time, you can be talking about describing feelings and how do you do that. So for to find people who understand, number one, do try to find time to mourn and grieve in your own way, whether it's with that support group, you go out to the beach, or go to church or the synagogue or whatever, realize that there are different ways people grieve that are valid, and don't become caught up in what grieving should look like or what other people think it should look like. Because that's not important, or what you think it should look like, that's probably the most doing should act exactly.

Susie Singer Carter: 1:32:43

We're doing the should-ectomies.

Don Priess: 1:32:44

I mean, some people need to cry, some need to revisit their their memories, some need to pray, some, you know, they express their grief through creativity. And some just need to feel active and useful. And there's no wrong or right, it's possible, you may need to or want to express your grief in different ways at different times. It's not one thing, it could be multiple things. And third learning and practicing mindfulness skills or meditation can be a really powerful tool for managing dementia, grief, it's important to understand that dementia grief simply as part of your life, it might be challenging at times, but in in in itself, it's not that bad, it's actually good. It means that you loved somebody. And because if you didn't grieve, that means you just didn't care and

Susie Singer Carter: 1:33:27

Right. It's like these, like Aha says, in Take on mMe, "it's not better to be safe, or sorry". So either way, if you don't love, you're protecting yourself, you're gonna miss out. And if you love really hard, you're gonna grieve really hard. And, and by the way, meditation comes in all forms. I'm not a big ewiw-ew person, I danced. And I'm telling you, that is meditation, you cannot think of anything else, but what your feet are doing and the sound of the music and that is meditate. That's releasing your mind from other thoughts. And that and it is therapeutic. What do you do Rosanne? To do that too.

Rosanne Corcoran: 1:34:08

I, you know, I always think whatever it is, you know, what might work for you might not work for me, it might not I still can't go to church, I go to church, I start I just start to cry, because I always used to take my mother to the church. So that doesn't, it doesn't work for me. And that's okay. So I actually just tried to feel and go with that feeling. I'm not, it's not like I'm making a list of this is what I'm going to do. I really, you know, it's so hard because it's, it's that relationship. And I try to just give myself the space to feel what I'm feeling. And for me, that's, that's pretty big. And then just try to I'm just just trying to move forward. I do try to meditate doesn't always work for me. I try to breathe doesn't really work for me either. But I try. So, you know, I try to I try to just move forward with with whatever, whatever comes up, and I try to be compassionate to myself and not be like this is God yet. No, I don't have to do anything. If I feel like I can do it, I do it. And if I feel like today's not the day, today's not the day, and that's what I I just try to try to work through that.

Susie Singer Carter: 1:35:34

Yes. I think that's beautiful. Because I think the one thing that that are one of the things that you learn as one is ending their life and, you know, especially when they've lost their ability to speak and move and you know, basically just dependent on everything and, and they're part of everything, and you can and you see what's important, and is that important, but that those moments that you're in at that moment, so do cherish the one you love. Cherish the time you have with them. And just make those memories get those memories because those memories are. So those are the gifts that you give yourself as a as a caregiver, get those memories, I get those, I have all these memories with my mother that I I will cherish for the rest of my life. I will cherish that "I love you" that if I hadn't been there, I wouldn't hurt it. I will cherish being able to hold her do pass Allah will cherish making her laugh, I will cherish all of the crazy shenanigans I got up to with her just to keep her you know, because it made me feel good to make her feel good. And I will cherish that. And I hope that you do while you're going through this process, or if you've already gone through it, just refresh your memories, make more memories. Know that you are making memories. You're just different differently. And just be present. Be present and just cherish the person that you love. That's all I can say. And we can't change it. We can't make them not die, unfortunately. But you can make it a beautiful, a beautiful experience. And it will be just like my friend Rosanne told me.

Rosanne Corcoran: 1:37:24

Thank you for having me be on this is very important topic. And I appreciate being on here with the two of you and I adore both of you. And I'm happy to to be part of your

Don Priess: 1:37:36

Ckique?.

Susie Singer Carter: 1:37:39

Tribe?.

Don Priess: 1:37:40

Well, that makes it that makes her Jewish. Okay.

Susie Singer Carter: 1:37:43

Listen. She's Italian. We're Jewish What's the difference..

Don Priess: 1:37:48

Same thing.

Susie Singer Carter: 1:37:49

We're emotional. And that's it. Done.

Rosanne Corcoran: 1:37:53

And we love and we love. We put our hearts out on the pulse. Yeah, exactly. So thank you. Thank you very much.

Don Priess: 1:38:00

Thank you.

Susie Singer Carter: 1:38:01

pleasure

Don Priess: 1:38:01

We'll have to do it again. Next time. Yeah.

Rosanne Corcoran: 1:38:03

Anytime you want I'm game.

Susie Singer Carter: 1:38:05

We are here if Love Conquers Alz, and Rosanne has a wonderful podcast. Daughterhood the Podcast. We always have wonderful guests and good conversation. And it's not always heavy. It's it's, you know, we tried to look at positive that is and which is all comes down to love right,

Don Priess: 1:38:25

It does. It always comes down to love. And there's Don? one reason for that, you know why?

Susie Singer Carter: 1:38:27

Why?

Don Priess: 1:38:27

Because love is powerful.

Susie Singer Carter: 1:38:27

Tis.

Don Priess: 1:38:27

Love is contagious.

Susie Singer Carter: 1:38:28

Tis.

Don Priess: 1:38:28

And Love Conquers Alzvand we thank you for being - like, share, do all those things because you love us. We love you and we'll see you next time.

Susie Singer Carter: 1:38:43

And be kind to yourself. Give yourself grace and thank you everybody. Love you. Bye