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19 | Living with the Hidden Grief of Caregiving: Early-Onset Alzheimer’s with Author Suzy McNamara · The Living Loss | Navigating Invisible Grief & Identity

• Cassandra: Hello friends, I'm Cassandra Harris Towner. Daiana, LMHC: and I'm Daiana Bernard. Cassandra: And as licensed mental health counselors, we're unpacking the quiet, complex griefs that don't come with a funeral because you can't heal what you don't acknowledge. Daiana, LMHC: Welcome to the Living Loss Podcast. We're so glad you're joining our conversation as we name these losses and create a meaningful path forward together. Please subscribe and share this episode. helps us grow this community Let's dive Cassandra: We talk about quiet losses on this show. And today we're looking at grief and loss surrounding the care of a loved one who has early onset Alzheimer's along with the unexpected life events that can happen along the way. Alzheimer's caregiving often asks people to grieve someone in chapters instead of all at once. To help us with this topic and to share her experience with us, it is our extreme pleasure to welcome Suzy McNamara to our show today. Suzy McNamara: Hello. you so much for having me on. This is such a wonderful podcast. You're helping so many people. So I'm really honored to be on. Cassandra: So glad to have you. Daiana, LMHC: Same. And I'm going to just give you a little intro. Suzy is an author, a poet, a mother, a four, fund raiser, a lawyer and a widow. 2024, after caring for him for five years in their home, she lost husband of 37 years, Bob McNamara, to early onset Alzheimer's. Months earlier, her sister and lifelong best friend, Elizabeth Muslin, had died unexpectedly from acute lung disease. Suzy believes that grief is a lonely sport and survival depends on community, shared language, and the courage to name what is often left unsaid. The silkworm, the magician, and the sister tree, a tale of love and loss. She has honestly and lovingly shared her heartbreaking journey for readers as they navigate their own losses and search for hope and joy. Cassandra: Suzy, we're so incredibly honored to have you here with us today. Suzy McNamara: my goodness. Thank you so much for saying that. That's so sweet. I'm so happy to be here. Cassandra: Well, we just read your beautiful bio. And before we get into the clinical side of things about ambiguous loss so on and so forth, we'd like to know if you can take us back to the beginning ⁓ When did you first start realize that the life and the future that you and Bob had built was shifting? Suzy McNamara: So about five years before Bob was diagnosed, he lost his sister very tragically. His sister was a writer and died very suddenly. And then he was overcome with depression to the point where he was ⁓ a and he was trying a very big case ⁓ and basically just fell apart in the middle of the trial. and was hospitalized. And he was diagnosed with clinical depression at that time. Now, you know, the doctors believe that was the beginning of his illness because it often presents early on with depression, with acute depression like that. know. Yeah. And so I would say if I had to pick, draw a line in the sand, that was probably, you know, the beginning. But depression is treatable. It's very difficult. It's treatable. And so there was still sort of a ray of hope. But over the next five years, our relationship just changed. We had this just incredible marriage, incredible connection from the time we really. mean, there was just, could fit, the cliche, we each other's sentences, ⁓ but we just connected in a like intense, immersive way with music and books, we're big ⁓ fans. ⁓ And we just always had, ⁓ That's like why I say that Taylor switched invisible string between us because there was just never a second in our marriage where I didn't know that he loved me and know that I was his person. But that began to fray. We just weren't connecting in the same way. Towards the end, right before he was diagnosed, we started, he was getting angry with me, which was really an unknown quantity. I mean, I'm feisty, like I will throw down. Daiana, LMHC: you Suzy McNamara: But with him, he was such a gentle, sweet person that we just never really fought. And then he was getting angry with me. And then about a few months before he was diagnosed, there were some very tangible signs. You know, he couldn't count change. He couldn't tell time really, like he was confused about dates and times and all the things. So it was obvious something, you know, was much more wrong. But for me, you know, if I can name the time where the grief really started, it was more about the relationship. I mean, those things about not being able to tell time and stuff are scary, but it just the real grief of having this person that, you we are so in love and then just not feel that same connection. That's really, you know, where it starts and then seeing your future slip away, you know. Daiana, LMHC: Mm. Yeah. Cassandra: Especially, no, no, no, I was just thinking about like the future that you had planned because we have these ideas, we have these thoughts, these things that we expect to have happen. And then suddenly it doesn't look that way anymore. Suzy McNamara: And then when you go ahead, please. Right. I mean, my life was just built around him and our lives were built around each other. And so it's just think of even a day in our lives not together was ⁓ just unfathomable. ⁓ And then when he was diagnosed, then it's like and then tell you it's terminal. It's not gonna be very long. And the time you have together is gonna be very difficult and you're gonna lose. Daiana, LMHC: Mm-hmm. Mm-hmm. Suzy McNamara: that person slowly and then quickly at the end. Yeah, that's a pretty stark feeling of grief. know, pretty stark and that's the thing you just don't ever, can't just pretend it's not there from that point on. Daiana, LMHC: changes everything. ⁓ talk about different types of grief ⁓ the podcast and one of them is ambiguous loss. And going to ⁓ reiterate definition that could sound very generic, but I want you to define it how it presented to you. Right? So ambiguous loss is a profound form of grief where the person is physically present, but psychologically or relationally changing. Suzy McNamara: Mm-hmm. Daiana, LMHC: We may think they're here, but they're not fully here in the way we knew them. How did this type of loss present for you? Suzy McNamara: Well, I think that it's very destabilizing because you ⁓ are grieving the loss of the that knew, which is very real. But you also, that person is sitting right there and he needs you. He really needs you, you know, then to take care of him. And ⁓ so I just think it's very difficult process. of all, you're not really given the luxury, if you can call it that. of processing grief in any kind of healthy way because you're you're taking care of him. But also, think you feel like disloyal to that person to grieve them when ⁓ they're sitting right there. You very selfish grieving them you know, I think there's a little bit of survivor's Daiana, LMHC: Mmm. Suzy McNamara: guilt even mixed in what they're because ⁓ with that because, you know, you're healthy ⁓ and you're to live, you know, hopefully a long life. And this person is dying. you know, and is very sick. And so, you know, I think there's guilt mixed up with that. You know, I think that there's, you know, feelings of disloyalty. I think, you know, your sense of identity changes because, ⁓ you know, which is very much mixed with that, too, because, you know, I was no longer his ⁓ his wife. You know, we are no partners. You know, all of a sudden the caregiver. So you're grieving that part, too. And I think Daiana, LMHC: Mm. Suzy McNamara: You know, when you lose, like I really noticed a difference when my sister died. You know, people in the outside world know how to handle that kind of grief, know the things to say. know, there are certain rituals. But when your husband, for you, you've lost so much of him already and the relationship that you had is gone. You know, that is gone. you don't get the kind of support from the outside world too. And ⁓ you don't those same rituals even in your own home. You know, like when some of you, mean, when Bob died or when my sister died, you you tell those stories that are so comforting. You know, you can laugh because, you know, you tell a funny story about them or you tell some amazing story when they were just incredible. And that's very comforting. But when the person's still alive and don't get, you don't ⁓ get to do that stuff, you know, you really can't. I mean, you can't, I certainly couldn't say to my children, like, remember how amazing was. mean, that would be terrible. Daiana, LMHC: Mm. Mm-hmm. Suzy McNamara: you when he's right there. But that is kind of how you're feeling inside. So spend a of energy suppressing all those grief feelings ⁓ because Daiana, LMHC: Yes. Suzy McNamara: there's nowhere to with them. Daiana, LMHC: Right. How old were your kids when he was diagnosed? Suzy McNamara: So when he was diagnosed, my youngest was 19, just 18, about to turn 19. And my oldest was 28, about to turn 29. And then I have two kind of in between them. truthfully, well, my youngest, when he started acting different, and Sean lived with us, he was in high school, and he was only like 14. Daiana, LMHC: Mm-hmm. Mm-hmm. Suzy McNamara: So he really lost the dad that could be supportive of him and be a... I think kids, they need a strong dad, like, because that makes them feel secure and safe. ⁓ dad was disappearing and we didn't know why. So I think that that really, and my son really struggled with, he kind of lost his bearings because his strong dad. was there and his strong dad wasn't connecting with him. So I think that made, you know, my son feel kind of ashamed, definitely unsupported. And so that was, that was hard. And Bob and I really, when he got diagnosed, I think the hardest part for us was telling the kids. And I think as parents, ⁓ I mean, Bob didn't want to tell them because he was, you know, It was hard for him to tell people that he had Alzheimer's for. And I didn't want to tell them because as a mom, you feel so protective of your kids and you this incredibly irrational feeling. ⁓ Like if telling them terrible news and telling them not only is your dad going to die, but it's going to be awful for the next few years. ⁓ It's really to tell your kids that. And so that very much a struggle. I would say one of our biggest struggles, if not the biggest. Daiana, LMHC: So those were his high school years. Your son's high school years, yeah. Suzy McNamara: But yeah, so for Sean, that was his high school years. And then when he was diagnosed, he had just started college. And I think for kids in their 20s, especially just going away to college, and he was the baby of the family, it was incredibly destabilizing for him, the experience. ⁓ it's interesting because our two youngest, during Bob's illness, they probably struggled the most. because they were maybe because of their age or because they were around him so much because they were younger and they were around the house more. And they both had the experience of having to move home But it was the best thing that could have happened because both of them went from having real difficulties. and scared, really scared and maybe angry to becoming these incredible caregivers. ⁓ so I for both of them, that experience was healing. And I mean, it really brings me to tears to think about watching them take care of their dad was really just incredible. so that ended up being a gift for sure. And also think the loss that you feel when the person you love has Alzheimer's, it's gradual. But they were able to experience it gradually in a way that I think was helpful for them processing it. ⁓ the older kids, since they weren't able to be around as much, think, towards the end and when he passed away, it was more difficult for them because they sort of experienced all that at once. ⁓ It's really Cassandra: I remember reading in the book that your oldest had the best version of Bob for almost as long as you did. And I thought that was very, very profound. I thought that was very profound because I wouldn't have looked at it like that. And I can only imagine what that shift must have done to you and to them and to watch that sort of change happen. Suzy McNamara: ⁓ I forgot I said that. sometimes there's people in your life, if we're lucky, that are just so incredibly special. And we're so lucky to have them, but the loss ⁓ is just so harsh to be so close to the magic of somebody that is so special, and then to have that go away, you'll always feel that because you know what real magic is. And, you know, I feel that way. And I know my daughter does too. he was. Incredibly kind, I mean. 100 % kind all the time, and there are very few people in this world who are 100 % including myself, you know who are 100 % kind all the time. We tried to be and very gentle and really to his core one of what was best for everybody that he encountered, whether he knew him well or not. And I'm not just mythologizing him because. you know, he's gone, which we all do, which that's great. But it really was who he was, which is why, you know, he's ⁓ even despite Alzheimer's, which separates you from so many people, he had this ⁓ swarm friends, you know, who were ⁓ all wanted was to be around him, even as the disease progressed. ⁓ And, know, they spoke, many of them spoke at his funeral. And he just was one of ⁓ just a really special person. And so I'm so grateful that Liz had that for as long as she did and that my other kids have it as long as they did. But, know, I don't think they're ever not going to feel the loss or be looking to find somebody just as incredible as he was. Cassandra: So I'm as to ⁓ how that impacted Daiana, LMHC: and Cassandra: not just family, but even the people around you, because this can also lead us into like that disenfranchised where it can feel ⁓ unseen or misunderstood or because it's gradual and not all in one follow suit. people don't necessarily know how to support you the way you need to be supported. Suzy McNamara: Right. and this is funny, you know, if I ⁓ to a couple of support groups, but any kind of experience I would have with other spouses of somebody with Alzheimer's, especially early onset probably is one of the things that was the most unnerving is being like, ⁓ he seems great. You know, he's much himself. ⁓ they're, first of all, I think they're self-soothing, which I totally appreciate, ⁓ you know, because they love him and they want him. you know, they want to find pieces of him and you know, where he is at that point. But it can feel very, very unsupportive. And it makes you feel very lonely when, when people were like, oh, he's still so much, you still have them and he's still funny and he's still that. And they really truly are only saying it to me now. So not a, not a criticism to them at all, but that feels very, very, very lonely. You know, I remember I was talking to one of his guy friends, on, ⁓ and ⁓ was ⁓ I still see so much of him there. There's still something there. And he's like, you see him? I said, you know, all I feel right now is like, who's going to talk to me about Yates? Like, ⁓ he can't that ⁓ And, and I know seems trivial or, but to me, it's like every day I would wake up and be like, what part of Bob is gonna be gone. And there's a little bit of up and down, but my experience really was more, the beginning, we'd be out with friends and he would start to tell the story and couldn't his verbal was affected by the disease, but I could finish for him because we had all these shared memories or I'd heard his story many times that I knew them. And I just love that, that just that moment meant so much to me when he'd start a story and he'd look at me and then I'd finish it. And then he would just beam, you know, because he felt like he was telling a great story. And then also, you know, just the fact that he had somebody who could help them and shared those memories with them. And that connection to me, that feeling of being so married, you know, so connected still that meant everything. And I remember the day when that was gone. And it could seem like such a small thing. I'm going to make myself cry. But I do remember the day that that was gone. Like, you know, I just all of a sudden couldn't understand he was trying to say. there's a moments that I've lost that really get to me. that's one of them. every relationship, every marriage has its own specialness. And there are things between us and our partners. or anybody that we love in our life that is special, that is unique just to those two people. And that is, it's just such a tragedy when that away. And whether it's swift with the sudden death, which is ⁓ so awful, or ⁓ little by little, like torturous, like is with ⁓ ⁓ all the little things that make up that between people, just being chipped away at, it's... just really torture is the best way to describe it. is. Because once it's gone, you know, that's what's keeping you feeling a wife still, you know, feeling connected. And once it's gone, it's just gone. So. Cassandra: You've touched on caregiving side of it a little bit. And I was just wondering if you could give us a little bit more of idea of what that caregiver burden and the emotional exhaustion that goes along with that really did you and for your family, because it was a complete shift in everything that you knew. It was a complete change in every single side of the relationship. Suzy McNamara: Mm-hmm. Cassandra: altered. Daiana, LMHC: And you were working during this time as well? Suzy McNamara: Yes, you know, which, you know, was I mean, people are like, oh, must be so nice to go to work and get away from it. And truthfully, I wish I had that time back. You know, but but we were we were in a financial situation. There's absolutely no way I could have not worked. And look, during covid, I work from home for a year. And that was amazing. And then even when I was back full time, there was a few days a week at home. So that was really good. and I think that does speak to the feeling of being a caregiver. You know, when you're a mom and all of a sudden, there's just a constant feeling of worry, about your kid, you always have to know where they are, you know, how they're doing. mean, that's maternal, we're supposed to be like that. And you have that same feeling as a caregiver is, you know, just that That kind of, you know, that's like guilt, if you're not with them, but the always the constant worry, no part of your life. Once you become a spouse caregiver, some, living with somebody that you're caring for, your life is completely changed. There really isn't a second in a day where you're not worried about that person and, or, physically exhausted, emotionally exhausted. And there's just this constant, once your husband and he was such an amazing. protector and he always took care of me emotionally too. That changes right away. And so not only do you have this huge situation that have to take care of 24 hours a day, but then the one person who would really support you isn't able to do that anymore. And even nighttime, you know, we slept the same bed, married, and you know, even I, I still don't sleep well because the main source of my worry was sleeping right next to me. And the person that you would talk through all the problems every day as a caregiver, there's one problem and 10 problems that you haven't solved yet. know, and so, but Bob was the person that I would talk through it, and he, and come to solutions with him. And then it was really just me, trying to figure out and, to be fair, that actually is somewhat of an exaggeration because I did have his friends ⁓ who I could talk talk through problems, which was great. Bob was constant person every day, all day long. And these ⁓ problems were ⁓ you know, serious, both emotionally, physically, financially, ⁓ so. the funny thing is, when after he died, I was in my neighborhood and I ran into a woman who's ⁓ a wonderful but she's like, you I'm so sorry hear about Bob, but you know, I'm, happy you. And I kind of stopped my truck and cause was, you know, really a week after his funeral, think, ⁓ and I in my tracks and I just went. Cause I built up a pretty thick skin. So when people would say bizarre things like what always happens, no matter what you're going through, I was pretty good about just realizing they're nervous. know, it's coming from a good place. All that, but that I couldn't. And I stopped and I went "happy". And she said, well, you must be so relieved. And I have tell you, I felt the 100 % opposite of And I know every case is different and it is so incredibly difficult. So I know that a lot of people did have that feeling of relief just from these constant stress, but I did not have that feeling. Even though it was so difficult, I could not let them go. I had a really difficult time letting them go and I did not feel any kind of relief. And I have to say, during the difficult time of caregiving, you could ask, you know, 10 caregivers and they would all agree with me that as hard as it was, and they would love relief from just difficult situation. But they would 100 % choose the same path, because the idea of not having that person was ⁓ worse. It is. Daiana, LMHC: Right. You found ways to connect with him before he completely wasn't able to connect with you. But while you were taking care of him, you had those glimpses of joy, you had those connections with him. He was still physically there. And especially when he wasn't with you emotionally, he was physically there. You can hold his hand and you saw your kids taking care of him. And you had all of those moments that now were completely gone. Suzy McNamara: Mm-hmm. Right, right. And I think I say that somewhere in the book. I definitely felt this way as, you know, as difficult it was like sitting on the couch at night and not having him, right there. It's, it's just brutal. It is. It is. And I think, and I think the one thing I'm so sorry, ⁓ the one thing that's difficult is another difficult part about Alzheimer's caregiving is that I think people don't feel Cassandra: Thank Daiana, LMHC: You were... No, no, go ahead. Suzy McNamara: as bad for you, is completely understandable, but it really does hurt. know, don't feel as bad for you when your husband dies because, it is a difficult illness and they are in a better place, ⁓ 100%. But that grief is real. You still feel that grief like anyone would It's very much the same. And it just, one person, I said this in the book, but one person said to me, Well, the good thing is by the time he's gone, you'll be 75 % through with the grief because you had that grief all along. that's true. I have no idea, but all these things, all I know is I felt like a normal widow when my husband died. I felt like any kind of widow. ⁓ think another thing is ⁓ he's alive, you do sort of suppress all the really wonderful memories because they're so painful and you do feel... Daiana, LMHC: Mm-hmm. Suzy McNamara: disloyal and lot of the grieving is going back, you backwards and then grieving that time from beforehand too. So. Daiana, LMHC: I appreciate that you are sharing all of these very detailed parts of grief because these are all misconceptions. ⁓ when a person is watching someone in so much pain, it could be very uncomfortable for them. ⁓ ⁓ the beginning of the book, you wrote about these where people just felt so uncomfortable around him while he was living. Suzy McNamara: Mm-hmm. Daiana, LMHC: and they acted very awkwardly or they would say things that were really inappropriate because they just don't know what to do with themselves, right? And that's a very human experience. is scary. It's uncomfortable. You don't want to do anything to offend the person or to offend the family. And we don't know what to do. Suzy McNamara: Yeah. Mm-hmm. Right. I know, I think that's really, that's another difficult part about Alzheimer's caregiving. And we were very social before Bob got sick. And was, he was very witty and funny and charming. And ⁓ after he got sick and he was still funny, like in a different way maybe, but I just, so many times, because he looked so, he looked very handsome and all that until maybe like a month before he died. so, ⁓ know, man would go up to him like a friend, a man would and ⁓ they would ask me like what's going on and I tell them and you know some of it was sort of hard to I'm sure it very hard to hear and and so they would sort of ⁓ back away like back away from me or whatever because it was just very difficult for them to hear. But of that is very mixed up. It's isolating. Daiana, LMHC: you Mm-hmm. very. Suzy McNamara: for, you know, because you really do need to talk about these things when you're out of the house, just to process them. And I think over time, you know, that's one piece of advice. You just have to really find the people that hear what you have to say and sort of ⁓ in that space with you for a time and listen to you and really hear it and. Daiana, LMHC: Mm-hmm. Mm-hmm. Suzy McNamara: You know, they don't have to fix anything because they can't so they not try to fix it, but just be there to listen and let you talk things. I mean, that's what my sister was for me and and you just really need to surround yourself with those kind of people because. The people that can't do it ⁓ and you know me. Back away from you or even be critical because they're so uncomfortable in the and that's just way too devastating. So you have to kind of stay away from those people during the as best you can and just surround yourself with people who hear you and listen. that, if I say, ⁓ Bob's just not able to do this anymore. And ⁓ I'm sure I've done a million times, but, then would somebody be like, what do mean he looks so good? Daiana, LMHC: Mm-hmm. and Suzy McNamara: you ⁓ know, that's very isolating. And, if he would go friends, You know, I ended up gravitating towards the friends and trusting it with people that I knew if I said like he can't drink anymore, no question, they wouldn't give him drinks. But there were many people that really had a difficult time accepting as his as he had more needs or more restrictions. They really had a hard time. And ⁓ but that all felt isolating and unsupported to ⁓ these things that every caregiver. Daiana, LMHC: Mm-hmm. Mm-hmm. Suzy McNamara: has definitely experienced, you know. Daiana, LMHC: Yeah, you're going through all of this becoming a caregiver, you're also caring. You're caring for your husband. You're caring for your kids, right? ⁓ kids doesn't matter. They're your kids. ⁓ you are, you found that way to support yourself because self care during that time is probably non-existent. But that part of talking to someone you trust that could Cassandra: Mm-hmm. Suzy McNamara: Mm-hmm. Mm-hmm. Daiana, LMHC: be there for you to listen to you. was ⁓ sister and possibly a other person in your life. are, I know there aren't many, right? Suzy McNamara: Right. You know, I'd say there were a couple of my friends who would listen. Then I had one friend, a really good friend who lost his wife. even though he lost her in a different way, I think that it really helped me to talk to him because could say absolutely anything to him. you even the most sad, the most even angry ⁓ or, ⁓ kind brutal details or whatever. First of all, he wouldn't tell me something wasn't. So for example, I guess this one example is when Bob was, when he ended up having to be in hospice, which I'm sure probably almost everyone goes through this feeling is even though the facts are as clear as day, but it's very difficult to accept the fact that your loved one is going to hospice. And part of why we had hospice in the home, but part of why that's so difficult. is you feel like a failure. And even as completely irrational as that is, feel like a failure because your job is to take care of them. And a lot of people are relying on you to do that. Your kids are relying on you to do that. ⁓ Bob's sisters, good friends are relying on you to be the one that keeps them going. all this is obviously irrational. Nobody blames you or maybe some, most people don't. And so you feel like it's very hard to over that feeling of failure ⁓ when have a purpose. And the purpose, you're doomed to fail from day one, but you do have that feeling. And so I called this friend, wife had she had been in hospice. And I said, I just feel like a failure. And all he said was, you know, I felt the exact same way. And that's really all I needed to hear. And I didn't need him to say like, no, you're not a failure, you know, like all that. I didn't need that because that, I just needed to know that felt that way. And I knew how good a job he did and what a good person he is. And ⁓ so he felt that same way, that ⁓ was to me. Daiana, LMHC: Mm-hmm. Mm-hmm. Suzy McNamara: I mean, there would be times I'd have to talk to somebody, either him or another one of Bob's friends or my, well, my sister or a doctor about everything about. You and this, like, you know, any of the ugly physical stuff, which gets pretty ugly. And a lot of people obviously don't want to hear it, but I mean, I'm talking about like bathroom things or anything, but those are very much part of the experience and are very difficult, but. I remember the night was, you we were sleeping and he woke me up in the middle of the night and he said, he said, ⁓ Suzy, you're a single woman and you work so hard, you know, if I can ever help you. I mean, that was really crushing because he really didn't, he understood that I was the person that was there for him, but he didn't understand marriage anymore. And if your husband doesn't understand marriage. all of a sudden that marriage disappears. it just does. And so this one friend is somebody I could call first thing in the morning and tell them that this happened. And, ⁓ know, he could that and listen and not not say how sad it made him, ⁓ and I'm sure it made very sad, you know, because it was a really close friend. So I think people you just need. to combat the feeling of loneliness that losing your spouse or whoever you're very close to, and especially somebody you're caring for, to combat that feeling of loneliness, you really need somebody who can listen to you and hear you because anything short of that makes you feel even more. So I guess that's another piece of advice. If ⁓ you're enough to find one or two people, that's all you need. That was another piece of advice he gave me too, was your circle is gonna get very small and that's okay because you need to just have a few people, two ⁓ or people, one or two people that you can talk to and that's all you need. And if you keep relying on other people outside of that small ⁓ circle validation, for companionship. Daiana, LMHC: Mm-hmm. Mm-hmm. Mm-hmm. you Suzy McNamara: every time you rely on one of those people that aren't able to do it, which no fault of their own, they're just not able to do it, then that will make you feel more lonely and more ashamed of your problem. So you really need to figure out who those people are as soon as you can and just rely on those people. And for the other people, they're very nice. you could be friendly, nice, appreciate signs that they give you, but they're not going to be your person that you tell everything. Daiana, LMHC: Mm-hmm. Absolutely. Right. You mean those people that can listen to you and then those that have gone through something similar that you don't have to say even much about it because they know they can tell you, yes, that makes sense. I went through the same thing. They can relate to you. And then there's this other part where you're so much to so many people and there's a part of your story where your sister felt like she needed you but couldn't come to you, And how expansive our is and our capacity for love, Because your sister was someone you deeply loved. ⁓ And there's part of your book where you said like, she was born when you were three. I'm like, how does she remember ⁓ when she was But like, you said it in a way that it was so impactful that you were like, she's for me. And like, you had this strong bond with her from the beginning. Suzy McNamara: ⁓ yeah. Yeah. Ha ha! Yeah. Daiana, LMHC: And her, could imagine her seeing you go through this was very painful for her. And she didn't want to put something more on you. Right. So. Suzy McNamara: Right, know. that's who she was. And she loved Bob too. So she was experiencing her own grief in that. she very much, because she knew better than anyone how it was to care for him and how much loss ⁓ I feeling about that. And then she really did not want to. burden me, but then, you know, I was, so grateful still that there was a one day when it, when it dawned on me that she needed me to tell her that I would be there for her because I was, I think because of everything with Bob and just because it was so horrifying the thought of it, it really took me longer than it should have to process the fact that she was going to die or that it was possible. And, and she did really try to hide it, but I mean, you know, the signs were there and I just really was in denial. As my dad used to accuse me of feeling it all the time, but I very much was in denial on that one. And you know, when I finally could see the dark circles under her eyes and hear the fear in her voice and realize that she was keeping things, I'm so grateful that I did have that moment of clarity and could call her. and talk to her because if I had never said that she could rely, if I'd never said that to her, mean, one more crushing thing about the whole experience, but if Bob wasn't so sick, I could have gone up there. ⁓ always have these like savior fantasies where ⁓ I could have gotten her to the right doctor or whatever. And those are just fantasies, but. Daiana, LMHC: Mm-hmm. Cassandra: you Suzy McNamara: are those feelings and know, just too impossible to have the two people you love the most be so sick at the same time. I mentioned this in the book, there were so many like little pieces of tragedy and little moments. It's almost like if somebody was writing a movie, they'd try to stick one of these in because it just kind of a tearjerker, very much a tearjerker, but. ⁓ right at the end when she was in a coma the last week. And I was a little bit back and forth. It went so quickly, but I was a little bit back and forth. Bob, he couldn't understand what was going on, but he could sense ⁓ that something was going on. And he was very much a father figure to her and very protective of her when he was well. But he every day would ask he would just pull down the sweatshirt, you know, because I would help him get dressed and pull down the sweatshirt that you gonna make myself cry again, but just you know, it's because he just wanted to wear that sweatshirt that she had given him and he would never be able to articulate why or even understand why probably but it was just so sweet and sad to see him, you know, sitting there so sick himself wearing the sweatshirt she gave him because he just knew something. something was happening and that was his way of being connected with her. But yeah. Yeah, you know, that's what you know, once again, those feelings of failure, I think that is, it must be just so much part of the caregiver, or just loss, more loss experiences, feelings of failure and shame, that you couldn't save the person that you love, know, and especially as people, all of us are used to being the people that take of other people. And that's who our identity is. ⁓ And, you know, I failed. Daiana, LMHC: you Suzy McNamara: but I did fail because I wasn't able to say the two people I love the most, which is very much a part of the grief experience, that feeling. Daiana, LMHC: Absolutely. And within that part where you were able to tell your sister, hey, I'm still here for you, there was so much relief for her. And it opened up that connection again for you both. And I could imagine how, like you were saying, thinking back on if that wouldn't have happened, how horrible it would have felt for you. And it's just like you were saying about a movie where Suzy McNamara: Yeah. We are. Right. Daiana, LMHC: They just put in another thing, just, throw another thing to this character. I can imagine that you couldn't, you weren't in denial. Yes, but there wasn't a capability in your brain to take in. My sister is also sick. Couldn't take that all in. How was it for you ⁓ in those beginning early days when you were taking that walk and that you saw that lady or just a week after you lost your sister, now your husband. How were those first few weeks and months for you? Cassandra: you Suzy McNamara: I remember moment she died or that day that she died and it such a rush of feeling my daughter Liz came up with me, which was ⁓ amazing of her and. that. That feeling of. Of really ⁓ not. Knowing. to feel. is the best way I could describe that because she was the person that I that I process. On the one hand, I really wanted to be her protector. So that entire day that she was dying, know, the only thing I could think of was to sing songs that our father and mother had sung to us when we were going to bed, like because she was in a coma and so there wasn't any interchange. And so I started singing to her. And. I mean, it was such a. maybe silly thing to do because it wasn't really, but it really was, I don't know, but it was just like the only thing I could think of to do because I really didn't know. Like if she had been alive when Bob was dying, I would have been on the phone with her the entire day, talking through, like processing my feelings through talking, know, to her, like strategizing, you know. I would have been able to let go of him in a more healthy way, probably, because I would have been talking through that with her. if Bob was healthy when she was dying, I could have processed that in a more healthy way, because I would have been talking to him, helping me to process that. But, you know, neither was the case. ⁓ And so she died, Cassandra: Thank Suzy McNamara: I mean, I had, I first of all didn't know how to feel because I would have been talking to her or to Bob about how to feel about it. also this of really pushing away any feelings of because first of all, I'm not sure I thought this just occurred to me to be honest, but I'm not sure I really felt like I deserved. to be feeling those feelings of grief, to like languish in those feelings of grief because I felt terrible, like I hadn't saved her. And that must be something that people feel when they're grieving. And also I had my husband who I Daiana, LMHC: Mm. Suzy McNamara: was supposed to be taken care of. And I was failing at that too. So I really tried to push down all those feelings. And... When I was at the tree that we dedicated to my sister and I couldn't look at the plaque, I literally couldn't look at it. I'd like look around everything because I just could not face the fact that she was dead. You for somebody who my entire life, I've been extremely straightforward, extremely able to hear bad news and ⁓ that figure out what to do. if there's something to do, how to handle it. I could not handle looking at the plaque. Daiana, LMHC: Mm-hmm. Suzy McNamara: for her. so then when the woman came up and started talking to me about her sister's life, her sister's loss, and it was really such a tragic story, really tragic story. Daiana, LMHC: Can you rewind a little bit to tell ⁓ our audience about the tree and how that tree came to be? Suzy McNamara: Yeah. Yes, yes. So ⁓ my sister died, she had told me because we had this tree for my father. And then when I was talking to her about my father's tree and walking near it, she said, ⁓ when I died, just put me there, know, just put me there. You're only one who's to go visit me. Just put me there. ⁓ So not true. I mean, there were several ex-boyfriends who showed up at her her funeral and they were all sobbing. And so very popular, very loved. But anyway, so when she died and I was at a complete loss and I knew that she wanted, that was the one thing I knew to do was to dedicate that tree to my sister. So work that out. So the tree was dedicated to her. I picked a favorite song of ours from her childhood put it on the plaque. And, know, I walked to that tree every day. after she died every single day. And there was maybe two months in and I walked up to the plaque and to the tree and a woman came up to me. It was a Sunday morning really early. And she came up to me and she said, am so glad to see you because I come here every day. you ⁓ it like this woman was pretty young. ⁓ you know, I was just wondering what the story was. And so I said, well, this is my sister. She just died a few months ago. ⁓ and she's like, yeah, you know, my sister just died, too. And it was like something within me. Pushed her all those feelings of failure ⁓ grief, and it gave me something to do. ⁓ is this woman who was grieving. And I was like, oh my gosh, that is so, it's because it was very, very sad. I said, you know, just bring something for bring something for your sister, like flowers or something, a stone, anything, you know, bring it and we can make this tree for your sister too. And that just, first of all, it made me feel like Liz-o because she was so kind and generous. You know, I just would love to be like her in every possible way. And. Daiana, LMHC: Mm-hmm. Suzy McNamara: And also it just gave maybe a little bit of purpose to me, you know, like I can maybe help this woman, with her loss. ⁓ And it was just so sad. You know, this plaque was so sad. ⁓ And we could create some sort of community and some sort of celebration of ⁓ of that lost, ⁓ I now I a stone for my mother there and my husband's mother and my friend's mother and just made this make this really a celebration. It gave me like sparks of joy that I wasn't sure that I'd be able to really have when it came to thinking about my sister and it still does. I was just there yesterday. So it's really been incredible. Like I know so many women who have lost sisters and it's just really incredibly sad to lose your sister. And so the fact that I could give them some sort of connection to their sister and bring them a little bit of joy and, community, make them feel not alone is ⁓ just an amazing gift, ⁓ from my sister, of course. ⁓ she's helping me process my feelings as always. ⁓ And it really it really is something, is. So every day I go there just to see like her plaque, which... still makes me sad, but then surrounded by the beautiful, the really beautiful, joyful, creative, loving women that are surrounding her. It's just an incredible feeling. Cassandra: Speaking of the sister tree, I was wondering if you might give us like a little synopsis about your book. When is it coming out? How can we find it? Like, what can we do with that? Because I know we're getting to really close to like the Living Lost Podcast, or I'm sorry, the Living Lost Lesson part. But before we do that, I'd like to know a little bit more about the book and what you can tell us about. Suzy McNamara: So nice. Yeah. Okay. Okay, so the book does kind of bones of the book is it's it it chronicles 2024 for me, which is the year that I lost both my sister and husband. And so it goes through the book, kind of just going through that year, that terrible year, perfectly terrible years, as I call it. But then I also do a flashbacks because I was really important to me to to you know, selfishly maybe describe why these relationships were so meaningful. But I also, I realized that it gave me an opportunity, it was such a gift to talk about both of the people that I love the most when they were themselves. And I didn't, since I might be the only person, maybe my kids will write their own books or her kids will write their own books. but that writes a book about them. And I didn't want the only book about them to be about how their lives ended and both, you know, so tragically. So I'm glad that I had the opportunity to talk about what amazing people they were. And, you know, I wrote it, I started writing it shortly after Bob died. I think it was two months, maybe a month and a half. And so this, the parts of the book where I describe his death are pretty vivid because they literally had just happened. am especially glad I was able to go back and talk about the Joyful Times. I think it really helped me like writing the Joyful chapters because it brought that back to me too, after such a difficult time. But so the book is going to be released June 2. So that's exciting. And it'll be on Amazon and Barnes and Noble. Cassandra: Hmm. Daiana, LMHC: Mm-hmm. Suzy McNamara: a couple other places too. yeah, mean, I guess when I started writing the book, really just wanted, probably was like a cathartic feeling of telling the story. But I think I mainly, know, because I did feel it's such a lonely experience, both losing somebody, grief is very lonely, and caring for with Alzheimer's is incredibly lonely. it makes me feel like I'm doing what I'm supposed to be doing if I'm trying to do something, you know, it helps me because when I'm not doing anything, then all those feelings of loss and, you know, failure or whatever it is start seeping back in. for me, telling my story was a way for me to work through that and help other people. hope, I mean, I think I've some people who are spouse caregivers with early onset, which is pretty unique. experience not as unique as we wish it was but ⁓ they've said like when they read even just like the excerpts like they could have written that and to me honestly that's the best compliment that I could receive that it felt feels authentic to them so yeah I mean it's sad that there are definitely I had to reread the book before know submitting it for publication and I was like wow this book is sad ⁓ Daiana, LMHC: Hmm. Cassandra: Thank you. Daiana, LMHC: Mm-hmm. Suzy McNamara: Even though when it's your own life, you don't that objective look like, know, boy, that's really sad. reading I'm like, this is sad. But there are some, you know, hopefully some moments of joy, but also just real deep connection. And I mean, that's to me, God's greatest gift is just that connection with another human being Daiana, LMHC: Mm-hmm. Suzy McNamara: just that that real connection, you know, I was so lucky to have that with two people. So incredibly lucky. And I think hopefully you get that feeling when you read the book, ⁓ Daiana, LMHC: I definitely have. I have been already touched by the book. So I cannot wait to finish ⁓ reading it. But I think that your honesty is what makes this book so special and the way you're able to tell this story. And it's so there, a lot of times when people are trying to be consoled for their loss, it's so fluffy and it's so, it feels out of touch. Suzy McNamara: ⁓ my gosh. Daiana, LMHC: But when you're hearing it from someone who experienced it firsthand and so recently, you do feel like, ⁓ no, this is it. And it's not too much. It is right. Because when you're feeling it, when you're feeling it in real time, feel like no understands. ⁓ you've it many times, that it feels isolating, feels lonely, and no one can understand what you're going through. Suzy McNamara: ⁓ good, I was worried about that. Cassandra: Hmm. Daiana, LMHC: So those words, that honesty, it's what's so touching to me. Suzy McNamara: I mean, I really can't begin to tell you how much that means to me. I mean, it really does. So thank you. Thank you. Daiana, LMHC: Of And as we wrap up today's conversation, we're going to move on to our favorite part of the show, living loss lessons. ⁓ This where we bridge together what we've talked about with tangible takeaways you can use right now. Cassandra: These lessons aren't about fixing the pain, but about finding a way to carry it. Sometimes it's a tool to practice and other times it's reflecting on the meaning you built from a loss that you never asked for. It's the strength that you've gained even in the midst of the hard stuff. Daiana, LMHC: You have shared so much today, only the parts that were hard, but the parts that ⁓ you through the journey while you were living it, while those early days of that living loss. What are some things that you have learned throughout this journey that our listeners could hold onto this week or during this time? Suzy McNamara: So I've been thinking about this a lot. And if I could. If I could think of one thing that will be the most helpful I think, I guess two things. ⁓ if you have somebody in your life that was so special and that you've ⁓ that person, the fact that their life on this earth is over does not in any ⁓ take away from the relationship that you had and the love that you had the love that they still have for you. ⁓ ⁓ I think that that is ⁓ hard to internalize once they are physically gone from your life. ⁓ I'm getting to the point, it's been a year for my husband, a little bit more than a year ⁓ ⁓ years for my sister. I am getting to the point where the shock of their loss starting to wear off. ⁓ those feelings of grief. I don't ⁓ those will ever go away. But really ⁓ how amazing it was or is to have love that they felt for me and still having that. the physical loss of them, that can't be But neither can the love that they for you and really internalizing that. So you really ⁓ feel that person within you. And it is lonely, but when you can learn sort of fold into yourself and feel them there, I mean, that is actually really helping me. That is really making me feel. still feel their companionship. if I have to think about the, you know, the funny conversations they had or the times that they were loving, those are still all within me. And so the support that they gave me throughout my life is still there too. And, I may be on this earth for 20 more years. I mean, The odds are against me with my family, however long it is, it's not going to, those aren't going to be years without them because they actually will still be here. And that is actually really me. And it sounds like, you know, maybe something you would just say to somebody who's lost, ⁓ but that actually those are, are helping me. And I think the sooner you start relying on yourself and not looking to the outside world, Daiana, LMHC: Mm-hmm. Suzy McNamara: world for validation and realizing that the people you love are within you. You you can turn inside to you to find those people that you love. That's where they are. if I'm starting to live with that, live that and ⁓ it actually making me feel stronger. I mean, truthfully, the amount of loss I feel is exactly the same amount as how much they loved me. And because the love was so great, the loss is so great. But if I can really start focusing on the love, and I am starting to do that, could still Daiana, LMHC: Mm-hmm. Suzy McNamara: feel the strength that I felt when they were physically in my life. So hopefully, that's as best as I can say it, but I think, oh, good. Oh, I'm so glad. Good. Daiana, LMHC: Well, that resonates with that resonates. That resonates with me. And I love to hear it the way you just said it, to just remember good times. Remember the memories. Like that is very surface of it. This is what I'm saying. The way you explain things to receive message ⁓ of what left was how they made feel. They made you feel loved, protected. Cassandra: Thank you. Daiana, LMHC: taken care of, that all those feelings are still within our being, that they're not completely gone because they have left that with you. It's a completely different way of saying it than just remember the good times, Suzy McNamara: but that is, I mean, that's a big part of it. ⁓ all those moments that you had throughout your life with that person, good and maybe not good, but that all makes up with the relationship and that connection is not gone. It just isn't, it really isn't. So, you know, I think when you have to get over the shock and the horror of... Daiana, LMHC: Yeah. Yeah. That's a good, yeah. Suzy McNamara: I mean, a lot of it is physical, know, the horror of watching somebody die. I I watched my two favorite people die right in front of me. And that's horrible for all of us who have experienced that. ⁓ will, you know, that shock will fade. What won't fade is that relationship with that person. It just won't. You just have to remember that it's there. Daiana, LMHC: Mm-hmm. Mm-hmm. beautiful. That's beautiful. Cassandra, did you have any last thoughts to share? ⁓ living lost lesson? Suzy McNamara: Thanks. Cassandra: I just was thinking about one of the last things that you said with great love comes great loss. all throughout this entire interview, ⁓ been a that no matter how much we love someone, when we lose them, there's going to be ⁓ this that can't be refilled. And at the same point in time, ⁓ the that we have ⁓ can hold that space. And I appreciate that thought. I appreciate that reminder because it's something that can get lost. It's something that can fall by the wayside when we remember like how hard things have been. But if we can hold on to the other parts, if we can hold on to the people that that listen, the people that are there, the people that support us and fall into that, then things get a little bit easier. So thank you for that reminder and just thank you for being here. Suzy McNamara: Gosh, I loved it. Are you kidding? It's such a, so amazing for me. This has been so wonderful. Daiana, LMHC: I can't thank you enough. I had told you in the beginning of the conversation before we started to record is that I don't believe in coincidences. And know that you were here, ⁓ not for me, for Cassandra too, but for me, ⁓ and all of our listeners that are going through this immense loss ⁓ of big And ⁓ to that, to see... Suzy McNamara: My gosh, So sweet. Mm-hmm. Daiana, LMHC: not your strength, but to see you walk through it and live through it, to have two losses really close to each other and to see that you can still find that love and you can still remember those good times. And you found a way to create purpose, to create this meaning that it is possible. And it does give me, and I'm sure so many people are gonna listen to this podcast, the same thing to give us that hope. Suzy McNamara: my gosh. Well, that's amazing to hear. Thank you so much. Thank you. Such a joy. Daiana, LMHC: you Cassandra: Thank Daiana, LMHC: Thank you to you, Suzy. Thank you to our listeners for being part of our circle today. And remember that in sharing this episode, you're helping us reach someone else who is carrying their loss in silence. Let's keep growing this community together. Subscribe, follow, share, and know that your story matters. Cassandra: And just as a reminder, this podcast is for educational and entertainment purposes only. While we are therapists, we are not your therapists, and this does not replace professional mental health care. If you feel like you would like to speak to someone, please reach out to a professional near you. Thank you again, Suzy. Daiana, LMHC: See you next time. Suzy McNamara: treat to be with you both. Daiana, LMHC: same.