Talk About Cancer
Talk About Cancer is a podcast of stories from cancer patients, survivors, caregivers, and family members. The host, Serena Hu, talks to her guests about their emotional journeys with cancer and what happens to the relationships in their lives after a cancer diagnosis. They sometimes explore how culture and faith shape each person's experience of cancer and grief. You will find diverse perspectives, honesty, and wisdom in these stories to help you deal with cancer and its aftermath. http://talkaboutcancerpodcast.com
Talk About Cancer
Secret society of caregivers
Sue gave us a glimpse into the struggles of caring for a loved one who is fully dependent on her and how in an extreme situation like this, self-care may just mean grabbing a few Oreos.
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Thank you for listening!
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My reflections on the conversation:
A big “thank you” to Sue for giving me a precious hour from her day to share her caregiving experience with us. Her situation with her husband is pretty extreme but there were actually many elements I could connect with, such as having a very short horizon and only being able to focus on getting through each task at hand or having a sense of being in a “secret society” where your own life seems so far away from “normal” that you feel like an outsider.
I know Sue reminded us to not try to be superwoman or superman, but I have to say, she comes pretty close to it in my book. Navigating the bureaucratic healthcare system with the ombudsman’s office is not a walk in the park, let alone for someone who is dealing with the emotional, financial, and logistical challenges of becoming a full-time caregiver. She also talked about the importance of making therapy work for her and not accepting services that weren’t effective. Rather than giving up, she managed to tackle each of these hurdles one at a time. It’s an incredible example of how resilient we can be when we need to care for the people we love.
Hey everybody. Welcome to episode 27 of the Talk About Cancer Podcast. This is your host, Serena. If you're new to the show, here's a quick reminder to please take a moment to hit that follow button on your podcast player so you'll get a new episode each week as they're released. In today's episode, Sue gives us a glimpse into the struggles of caring for a loved one who is fully dependent on her and how in an extreme situation like this, self-care may just mean grabbing a few Oreos. Let's dive into her story now, and I will check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you'd like to share with our listeners.
SPEAKER_00:Thanks, Serena. My name is Sue, and I'm 47 years old. My husband is 48 years old, and we're from Ontario, Canada. In June of 2020, last year, he was diagnosed with stage four glioblastoma brain cancer, and he then suffered a massive stroke five days later while he was recovering from surgery. And I had spent previously a lot of time as a mental health advocate and crisis responder, and I used to spend a great deal of time talking to people, encouraging people of self-care. So I felt I had a pretty good handle on how to, you know, find balance with difficult times. It's way different when you deal with something to this extreme. You know, when I heard the diagnosis of cancer, I thought, okay, you know, we can do this. I'm an A-type personality, I thrive in organization and challenges, and we spent the last decade dealing with my own cancer and my own cancer scares and multiple surgeries, and I thought everything will be okay, but it wasn't.
SPEAKER_01:So many things. So actually, I didn't realize that you were a survivor yourself, so it's just such a complex experience that you're having and being, you know, in the mental health arena and being a former crisis responder. Can you actually just share with me what that was like when you felt like I am prepared for this? And then realizing this is way bigger than I thought it was going to be.
SPEAKER_00:Yeah, definitely. So my husband was left with devastating consequences as a result of the brain tumor and uh the stroke, and he came home not being able to walk, talk, he was on a G tube, uh, he was incontinent, needing a hoyer lift for transportation, you know, from the bed into his wheelchair, everything. And like you said, being very organized, and and I had uh binders of I would have different dividers of keeping track of all of his meds and keeping track of you know when the nurses would come in and everything. And then the grief and the anxiety and depression that just came raging into my life, you know, facing reality of everything really made it difficult for me to keep going. You know, I I it wasn't it became pretty clear that this wasn't a situation that I would just find a few inspirational quotes to keep me going through the day. And um self-care became very, very challenging. And and being an advocate and always saying, you know, how important self-care is, preaching to people, you have to care for yourself, you know, or you can't show up for others unless you show up for yourself. And and it became very clear after about a month of not sleeping, not being able to eat regularly, putting everything I had into his care, that this was a lot. This was a lot to take on. And so from then I tried to navigate an incredibly broken and inconsistent system requesting support and help to help me get through this. Uh, the system is completely flawed. And I took on the role of, you know, being a nurse, being a PSW, being promised that we would have lots of support when you know being in the home. And I think it's a patient's right to be able to stay in the home if that's what they want. Family-centered care is incredibly important. And you felt like I felt like I was constantly going against a system that was wanting to set me up for failure, you know, that wanted to see me fail to say, I can't do this. Wow. And I was determined to keep going, but it almost broke me.
SPEAKER_01:You know, when my dad was starting to decline physically and he was not able to get to the bathroom on his own, right? Walking started to become difficult. There were a period of time when, you know, people were telling us, like, do you want to consider, you know, sending him to a facility? And we just knew that was never going to work. I mean, the man was already depressed about facing his own mortality, to then say, Oh, we're gonna send you to a facility, would have just broken him immediately. And it was just not an option. And to to have to figure out who can help you in the home and hiring the right in the United States are called um home health care worker. And in that process was hard. Um do you want to share a little bit of what that was like for you? Did you have success in finding someone?
SPEAKER_00:I think no matter whether it's the states or it's in Canada, I hear very similar stories of trying to navigate the system of trying to get the proper care and support for loved ones. Um, you know, we like I said, we were promised that we would have, we cut it's personal support uh in Canada, personal support where it's very personal care. You know, you're having someone come into your home and provide, you know, they're washing your, you know, washing your loved one, they're changing them, they're providing. You need to find someone who you feel safe enough to leave that room. And for the first eight months that my husband was home, there wasn't someone that I could I felt comfortable with. There were many times that people would show up to my house and within five minutes I was asking them to leave. They either did not understand his diagnosis and talked like he wasn't in the room and was very condescending, or they didn't even know how to properly put on a brief or wash him. And the what you were saying about them asking you about, you know, considerations for long-term care. It's really, really like as caregiver advocates, we know our loved one best. And I know that my husband would never ever want that. So no matter, and even though I felt like this system was really trying to break me, you know, they're really trying to let me just fall apart and and make that decision to put him somewhere, I knew that that was never an option. Um, and that's something that I feel very strongly about in advocating for family managed care. Uh, after eight months, I had filed complaints with health ombudsmen, went to the government, patient relations everywhere, and you know, said I am at a breaking point. I am having a nervous breakdown. I am mentally and physically exhausted. I am hurting my back all the time. I'm having um, you know, my heart was split-flopping in abnormal rhythms. I had lost over 20 pounds, my blood work was coming back abnormal. And it was finally flagged by the health ombudsman who ended up contacting our services here where we get the support, and they agreed that I would be able to find somebody, uh, a personal support worker of my own choosing to come into the home and they would fund it. And that has been a huge turnaround for us because I was able to find somebody that, you know, I knew their background, I knew they also had experience as a caregiver. Uh, they've walked this life, they've lived this life, and now they've chosen this as a career. And I mean, I'm able to talk with you today and leave the room because she's with my husband right now. And that never happened. For the first eight months that my husband was home, even when somebody would come in to care for him, I couldn't leave the room. And it was exhausting. And so now I have somebody who uh is here to be able to give me a break, and I'm able to shower more than twice a week. You know, in the beginning, I'd be lucky if I showered twice a week. I had a therapist at first who would say, you really, really have to self-care. And same thing, right? Like what I would have preached before. It's important to, you know, get your get nutritious meals in, but she had never lived that life. She didn't understand. It's it's really hard to explain to somebody who hasn't walked this path that sometimes self-care is like grabbing a few Oreos, you know, something that only, like I said, that if you've gone through it, you understand. I was mentioning to you before about that secret society of caregivers, you know, where if you've lived this life, you get it.
SPEAKER_01:Exactly what you said about because I I have a background in social work and I I actually spend my time in graduate school um doing my practicum in nursing facilities. And so all of those things, it's like I knew, right? I mean, and I still tell people that today. Yeah, you know, being a caregiver, self-care is super important. It's a marathon, not a sprint. Absolutely. But during that period of my life, like with my parents, you're just in crisis mode. You're literally just trying to get through the next few hours, the next few days, like days even sounds unfathomable, really. I mean, you're really just trying to get through the next meal, the next activity. And yeah, all of that goes out the window when you're in the crisis situation and it's so hard to get yourself out of it. So, I mean, kudos to you for being very persistent about the advocacy and finally getting to the ombudsman and being able to like get that support. I didn't realize that the workers were being assigned for us here. We don't get any financial support. I mean, all of the home health care is generally just pay out of pocket, but we go to agencies and we basically interview. Um, the, you know, they would send someone who's more like a marketing person, yeah, right, to talk to you about their services and it all sounds great. And then they send somebody to your home and you're like, this is not what I was imagining at all. It's like they talk to the person like their children. Yeah. And it's like, no, you don't need to shout. They can hear you, you don't need to talk slowly, they understand you. Yeah. Right. It's the same. Like we tried to interview a few agencies, and just within 10 minutes, I was like, this is not gonna work, guys. Thank you for coming today, but no thanks.
SPEAKER_00:And I think that that's really important too, is that there's some families who feel that they have to just accept whatever help and support that they have. And for some families who don't, um, you know, don't have the the know or the or even the insight in how to self-advocate, or there's a lot of um, you know, people who need personal support and nursing and and care that are suffering because they're not getting the proper care. Um, I feel very fortunate that that is one of my strengths that I can advocate. I mean, if I have to show up for my husband, then I need to make sure that I have a good support system too. So in the beginning, when I didn't have that, I didn't have that consistency and I was just getting frustrated and frustrated, it's it's awful. You know, you're you're trying to show up for your person, care for their everyday needs. And like you said, you're you're in survival mode. You know, I've been in survival mode for over a year now. You know, sometimes I'm pretty disconnected mentally. Like that's that's just reality. Like that's yeah, the grief and just processing everything that has happened, um, our lives, our dreams, everything that we had planned just came to a raging halt, you know, with no warning. And this isn't like the cancer that I had, where you know, six weeks of recovery and I'm good to go to get on with life. My husband was left with devastating consequences, and the kind of cancer that he has is one of the worst kinds of brain cancer that you can you can get. And so we literally live scan to scan and one day at a time. And as far as how I am coping with all of that, is that you know, like you said, just it's hard to project into the future, and I literally live one day at a time. You know, when I get up in the morning, I pray to my higher power, just give me what I need to get through today. And and that's how I do it. I start off my day with uh a few months after this had happened to my husband. I um I started a Facebook messenger gratitude group where 15 or so of my friends every morning we post five things that we're grateful for. And some days it's really, really hard to find that place to sit in gratitude, you know, to find something to be grateful for. But my friends all post their stuff, and I can I can pull some of theirs, you know. Like if I'm if if the grief and the pain is just swallowing me in that moment where I'm having trouble finding gratitude, then I can just look at other, you know, my my friends list what they're grateful for, and that will help me get through the day. And I don't want to, it doesn't, it's not helpful to this situation for me to be just totally entrenched in the grief. And I have my moments where I go to the bathroom and I cry, and I just sit on the floor and I just cry, cry, cry, and then I get up, I wipe, you know, I have inspirational quote on my on my mirror, take a breather, and I come back out, and then I just, you know, I can do this. I just gotta get through the rest of this day. And that's I mean, that's just what it is, right? You just try to get through it as best as you can, and and um, I mean, no one there's no real perfect answer for how to navigate a journey like this.
SPEAKER_01:Did you say you started that Facebook messenger group? Yeah. That's really awesome. Lots of guests talk about gratitude obviously being a key thing to get through whatever challenge it is that they're navigating. But I love this that, you know, it's okay some days that it's hard for you to come up with something like just seeing other people's, you could still pull strength from that. I I really love it. Thank you for saying that.
SPEAKER_00:Sometimes it's you know, it's even something that this week it was funny because you know, I would say I'm really struggling today. And then someone would post their list, and then this would be like, I'm grateful for the inventor of the air conditioning. And I'm like, yes, I can I can use that for today. That is something I can be grateful for today, too. Yeah, you know, and the whole idea of gratitude, interrupting I mean, I've always kind of been a firm believer in interrupting anxiety, pain, suffering, grief with gratitude. And so I that was my go-to. You know, it's it's something that has helped me in other past situations. And so I I was really I was really happy that I had a bunch of friends. I have a really good tribe of people that stepped up and said, you know, yes, like let's do this. And it's it's been going on now, like I said, for for a year. So wow.
SPEAKER_01:I'm sure they're getting a lot out of it too. It's not just for you. Yeah, yeah. Um, that's really awesome. Thank you for sharing that. And going back to something else you said, you know, in terms of ugly crying in the bathroom, totally been there. I've done that. Yeah. And one of the things that as you were talking just sort of reminded me about how, you know, when you're in that crisis survival mode, getting through the day, right, getting through that next activity, is how you can focus on it's almost like it's harder to pull back and see the big picture. Because I think it's hard to be in the moment to get through whatever it is that you're trying to get through. But then when you're sort of stepping back and seeing the big picture, that's when things like, oh my gosh, like what has my life become? Right? Like, like that's when those realizations start to come in and you sort of realize how different today is versus maybe the vision that you had for yourself before everything happened. So sometimes it's almost scary to take that step back because that's when all the other stuff then comes flushing in.
SPEAKER_00:Yeah. I think that when, you know, when I first started to have a regular PSW that we have now, um, the first couple weeks that she was here and I was able to leave the room, there were so many times that I would just go to my room and I would just cry, you know, and I would just I would just fall on my bed and I couldn't get up, you know, because I I was just in so in that caregiver role where I had to just do do do from the time I got out of bed until I went to bed. It can be scary, you know, when you're when you do have that those moments where you have to reflect and you think about wow, like what is what is going on, like what's happening with my life, and and being able to process that. I know that it was very important for me that I ended up shopping around for another therapist who could help me navigate those emotions. And I consider uh when I meet with her weekly as grief sessions, and that I take that, I kind of have a scheduled time where I allow myself to feel all the feelings that I'm feeling, talk about anything that um, you know, I've kind of just been stuffing inside and and then you know, and then just allowing it to come out in that hour. And that feels safe for me because sometimes when you start to cry and the emotion seems so heavy and the grief seems so deep, I think to myself, I'm not gonna get out of this. You know, it's going to just it's just not going to end. And um then you start to cycle into the anticipatory grief of not just what you're going through right now, but you know, what might be or what will be. And it's very um it's very challenging to to stay in the moment sometimes. So I think that as hard as it is to be a caregiver and exhausting and everything, you know, sometimes it's it's one of those things where it kind of keeps me from going down that bottomless pit of despair and not getting back out because that scares me.
SPEAKER_01:Yeah, that's such a good point, because it's it is something that then gets you out of that fetal position that you're in. Um because you're like, okay, I gotta get to the next thing, but then what if there isn't that? Are you just gonna get stuck in that fetal position forever? That's a very scary thought.
SPEAKER_00:It is, and I mean, there's still and life is still going on outside of you know, this little small circle too, you know. Like I have a 16-year-old son that for the first, oh goodness, like nine months, I felt like he was just left on his own. Yeah, you know, I could not show up for him. I was I didn't have the support that I have now, and I was an absent parent, and and that's not okay. Like that's not okay for families to be so exhausted and so burnt out that um you know, that it's affecting everybody. And I really would like to see in you know, in Ontario, Canada, where we are, uh, we have the publicly funded home care. I would like to see it shift into family-managed care where families are able to be more inclusive in the role of selecting who's looking after their um their loved ones, uh, being able to have more support and more care. The way that I look at it is that if a it's a patient's right to be at home, uh, you know, while they are ill, while they are palliative, that's their right. So why should they have less services and less support, less support at home than what they would if they chose to go into a long-term care home or into a nursing home facility, hospital. It shouldn't be different. It's actually more cost-effective to be able to provide those services at home than it is to place somebody into long-term care. And I don't know what the solution is to that. I know that I've been vocal about that. I know that there are a lot of people that agree with me. Um, I'm hoping that one day that that does change, that um, you know, the support at home can be more aligned with what it would be like if somebody was in a facility so that families are not getting burnt out.
SPEAKER_01:Yeah, it's one of those unfortunate things that's like tied up with insurance. And I think just the fundamental paradigm under which a lot of the policies were made. And so when I was in school and I was studying aging, there was a big push around aging in place. And rather than taking people who's lived in their apartment forever out into a facility that they're unfamiliar with and doesn't feel like home, bringing the services to them and ramping up the services over time as they age. And I think that's very similar to what you're saying, which is the patient wants to be home. Like nobody really ever wants to be in an institution.
SPEAKER_00:No, yeah, especially now with COVID and everything that's happened, like it's scary. Yeah.
SPEAKER_01:But then to your point, too, also holistic care, right? Not just the patient, but for the caregiver for family members that are around, it's a it's a family system. Every everyone gets impacted in a situation like this. Yeah.
SPEAKER_00:And I think that I I had a nurse come in one time and um she had made a comment to me and she said, you know, it was about me taking care of my husband, and I'm doing such a good job and everything. And and she made the comment, she said, Oh, you love taking care of him. And I just thought, okay, wow. I don't know where that comment is coming from. I show up in love every single day. Of course I'm going to take care of him, but I would rather not this be our life. I would rather not this be my role. Yeah, I just think that sometimes people, you know, they don't realize. Yeah. I mean, I quit my job, I had to quit school, the things that I had to do. And of course you do that, you know, like of course I'm going to do those things for my husband. But at the same time, I would like some some recognition for the fact that I'm doing a job in which I'm not even, I wasn't even trained for. When my husband came home, I was doing, you know, I was giving him needles, I was um giving him his insulin and doing the his G2, like all stuff that nursing would do. If I tried to do when he was in a hospital, they would be, whoa, whoa, whoa, you're not qualified to do that. But suddenly I'm at home and and I'm qualified to be a nurse, a dietitian, a PSW, a physiotherapist, a massage therapist, an occupational therapist, a speech and language pathologist, suddenly I'm qualified to do it all.
SPEAKER_01:Yeah. It's one of those unfortunate situations where people are trying to say something positive. And sometimes, I don't know, almost as a way to relieve them of their own whatever they're feeling for you, like maybe they feel bad for you, right? Um, but yeah, in that statement, they're not recognizing the sacrifices you've had to make completely. And it's not an either or. I feel like that's the other thing that often we forget is oh, you do this, so you must love it. And it's like, no, like those are not, you know, like those are not the same thing. I do it because I love the person, but it doesn't mean that it's something that I actually want to do or enjoy doing for that fact. Yeah, but it there are a lot of those types of exchanges. And yeah, I think over time you just kind of learn to not get mad at them, right? Because it's not gonna change anything really when they haven't walked in your shoes, they just don't know.
SPEAKER_00:Well, that's the thing, right? It's and I know that I can be very, I can be very vocal and I can, you know, express how I'm feeling and share my story on social media. Um, you know, but unless you've actually experienced this personally, it's really hard to actually know what it all encompasses, you know, mind, body, spirit, everything that it has affected our life completely, you know, and dealing with, like I said, there's my husband who deals with, he's got to try and come to terms with the fact of his own diagnosis, his own loss, completely, you know, shattered with the deficits that he has, me being being a witness to that and dealing with those emotions, plus, as a couple dealing with the grief and the loss of what our life was supposed to be. And so there's different, all these different emotions swirling around, and then there's still G2 flushes that need to be done. There's still, you know, like everyday care that needs to be done. It's it's trying to find that oh, and I don't like to use that word balance again because it's so it's so hard. It doesn't exist. It doesn't, but you know, you dealing with the the physicality of care and also the devastation of why that care is needed.
SPEAKER_01:It's not really a balance, it's almost like a distraction. So when I was going through that last part of my dad's journey with cancer, you know, I was still working full-time, which is how like me and my mom sort of switched off in terms of caregiving responsibilities. And so, and I just remember like I don't really like to work. If I could not, like if I could just be a stay-at-home wife, that'd be awesome. But, you know, that's not the cards right now. But work at that time was almost a good thing because even though I don't particularly enjoy my job, but it was just also a time to do something else that wasn't this really intense life event that brings up all the different emotions from guilt to sadness to anger. So work was actually almost just a good distraction at that time, even though it wasn't anything that I would choose to do.
SPEAKER_00:That's so understandable. That is completely understandable. I mean, I feel that way with having the respite and the PSW support that I have now. I completely check out, you know, I don't I she doesn't message me unless, you know, my husband needs something. Sometimes I'll check in, but I completely check out. And I think that that's really important. And sometimes I have to, you know, we're in the middle, we're in the middle of moving right now of all things. And so I'm busy packing and I'm busy, you know, organizing. This mood and stuff like that. I don't like it. I don't want to do this, you know. But at the same time, I'm still, like you said, I'm getting a break from the intensity of that particular area of my life.
SPEAKER_01:Yeah. Again, it's not a balance, but strangely, it's kind of helpful. Um, may I actually go back to something that you mentioned in terms of working with a therapist? That's something that I have not yet done in my life, strangely, for someone of my background in training. But how did you know? Because I think you said you had to change your therapist. Yeah. So how did you know when you found the right person? Because I think for people who hasn't worked with therapists before, it's kind of a black hole that they don't understand, but it's such a big source of support for people going through very intense life events.
SPEAKER_00:For sure. I think that when I was, I mean, I tell people shop around for a therapist, and when you know who is the right fit, you'll just know and don't stay with somebody who you feel uncomfortable with. And if you're leaving feeling like that wasn't helpful or that I don't feel like um this is going to be able to shift me into that place of where I can be okay with where I'm at. I felt if you feel resistance when I was with the first therapist, I felt a lot of resistance to her suggestions of, you know, wanting me to write down and do goal, weekly goals. Like weekly goals. I'm trying to like write down in my husband's binder if he had a bowel movement. Like, I can't keep track of like whether I'm drinking eight glasses of water and doing all this, and and the ideas of what you're looking for really need to align with the therapists, how they see uh you working together. So when I had felt that resistance, I'd felt like this wasn't working. What I did when I began to seek out a new therapist, I said, This is what I'm looking for. I need someone who has experience working with caregivers who have family members who have terminal illness. Yeah. I need someone who is experienced with knowing what the caregiver life is like and isn't going to tell me that I need to eat three meals a day and get enough water because I can tell you right now, that's not gonna happen. You know, and I think also it's important to know that this life, the caregiving life, is so different from day to day. And I needed to be able to just come to my sessions and be able to just talk about or focus on whatever was going on for the day, and not always sometimes in therapy, you kind of go into a very systematic, you know, we were working on this last week, now where are you at with that? Well, this week could be something totally different. You know, I may have been talking about that last week, but right now I have to deal with this.
SPEAKER_01:So yeah.
SPEAKER_00:Um, and just being very, very open about what you're looking for and what you need. I mean, if you're thinking to yourself that you need therapy, ask yourself, why do you feel like you need therapy? Do you feel, you know, is it feeling overwhelmed, feeling the anxiety, the difference, and put that out there. These are the things that I'm feeling. This is what I need. I need someone who can meet me at the place that I'm at and not tell me that these are the things that I have to do, but let me be where I'm at. And I don't think it's about um, you know, getting stuck in the grief and getting stuck in the feelings, but I think you need to also have somebody who's gonna allow you to honor where you are and not always be, you know, one of the famous, you've probably heard the terminology about being solution focused, you know. And sometimes, sometimes there isn't a solution, sometimes it's just this is what it is, and it sucks, and it can be messy, and it can be awful, and if I'm trying to push through that and ignore that, it's just gonna come back later. So to just be able to the only way through it is through it, yeah.
SPEAKER_01:How I dealt with the grief and the sadness and all of that was just an ugly cry. But would you say that talking to a therapist is more helpful than just ugly crying in the bathroom?
SPEAKER_00:I think it is because I think that sometimes for me personally, I can only share my experiences that I can get really stuck in my own head and in my own thoughts, in my own perceptions of things. So having someone be able to help me to kind of unravel the feelings, also to get the validation from someone that what I'm feeling and what I'm thinking is completely normal because sometimes I feel just completely insane and to know that that's okay, you know, that's normal to feel like, you know, I had somebody tell me a long time ago, um, if you're concerned about being insane, you're probably not insane, you know. So just being able to um crying is so important. I mean, tears are are healing and it's such a good release, but I also think that having someone to be able to share uh, you know, what is going on. And and sometimes there's things that you have friends that you can share your your deepest innermost thoughts and feelings, but not not everyone has that. So that's a good time to have someone that I guess like also be objective about things as well. Um, and and also when I'm questioning, you know, what I'm feeling or decisions that I'm making to be able to have somebody to be able to kind of give their opinion of that, I guess you could say.
SPEAKER_01:Yeah, that makes sense. Sort of like an objective validation point. Yeah. Who can kind of see it from a few steps removed, uh, but not sort of judging you and not giving you superficial advice. That's not really practical.
SPEAKER_00:Yeah.
SPEAKER_01:Yeah. Thanks for sharing that. Any last thoughts and key message that you want to share with other caregivers who may be going through a similar situation right now?
SPEAKER_00:So I recently had posted something on Facebook to uh give something away, and someone had messaged me and said they were interested in the conversation. I'd found out that she is going through the same thing that you know, I was in those initial stages. Her husband is still in the hospital, and being able to, you know, just offer, like I said, sometimes we feel like we're in that secret society of caregivers and being able to offer the support and and even just the understanding to other caregivers, you know, to let them know that they're not alone and that there are people out there that understand and are going through this life. And it's not an easy life. I mean, if you choose to be a caregiver of somebody, you know, in the beginning, like I said, I thought I can do this. I was really eager and enthusiastic and and thought, I, you know what, I'm gonna take this and I'm just gonna run with it. And it was nothing like I experienced it, but I'm getting through it. And I would just encourage people who are in the same position as me just to surround themselves with a tribe of people who on those days where you feel like you just can't possibly do it one more day, that they will just hold you up. You know, I I'm a firm believer in that, you know, my son on Mother's Day this year, he got me a card. He always does write something in it. This year he said, uh, you know, to one of the strongest women I know. And I told him, I said, I don't feel like I'm strong. I feel like I present strong because I have people that carry me every single day. And that's so important to surround yourself with people who can help you through this and don't don't try to be superwoman. You know, I thought I could just handle it all, and it's okay to ask for help, and it's okay to it's okay to feel like this is not an easy life, it's not, and for me, I just let love lead. I have to just let love lead and just keep showing up the best I can.
SPEAKER_01:Thank you. One last question. Sure. Why do you call it a secret society of caregivers? What does that mean to you?
SPEAKER_00:A conversation. It's a blog that I wrote uh a while ago when I had a conversation with somebody about the fact that there are so many people that don't understand what the caregiving life is like, and we kind of feel like we're underground and to the outside world. You know, I go to a store and I think, you have no idea what my life has been like. I went to the bank last week and the woman said something. I had to show my ID, and the manager came over and she said, Oh, you know, your license is expired. And I said, Yes, but you know, COVID, we had an exception. They're giving us, you know, she's like, but it's really, really expired. Like, you can go and get it now. And I just looked at her and I said, My husband is palliative, you know, and it just came out of my mouth. And she was like, Oh, I didn't know that. You're right, you didn't know that. You know what I mean? Yeah, like people don't know what you're going through when you're walking through a store, they don't know that you've just spent an hour, you know, like cleaning up like a mess, you know, in a hospital bed at your home. Like it's so it feels like it's a secret society that unless you are have been through it, you just don't know.
SPEAKER_01:Yeah. Thank you for explaining that. That makes a lot of sense. I remember I used to like sneak away to go work out at a studio class or something, but I would be like checking my phone like a crazy person because every 10 minutes I'm like, is everything okay? Is everything okay? And you know, I've gotten yelled at by my teacher before. It's like, put your phone away. This is not the time. This is time to focus on your health. I'm like, I know, that's what I'm here, but like, but I still gotta check my phone. There's a reason for that. Yeah, but you know, but you're not gonna get into it because then like once you say it, the other person's like, Oh, I'm sorry. And you're like, it's fine. I just I just won't have this discussion.
SPEAKER_00:And again, if you want to get out of the house, right? Sometimes you just want to get out and not talk about it. You don't want to have to explain that this is your life, you know. Sometimes you just need to have that disconnect.
SPEAKER_01:Yeah, because you're like, I came out just so I can feel an hour of normal. But then if I start telling you about my story, then you feel bad for me, and then I make you sad. And that was not why I came out for the hour in the first place. Yeah, so but yes, that that makes sense. Thank you.
SPEAKER_00:Yeah, I think there's just experience unites us, and um, just as the way that cancer patients find that unity and sharing um their stories, and I think that caregivers find that unity in sharing their experience as well, and that it's not talked about enough.
SPEAKER_01:Yeah. Well, thank you so much, Sue, for taking the hour with me. I know your time is super precious. Thanks, Serena. So thank you for coming on.
SPEAKER_00:Thank you.
SPEAKER_01:A big thank you to Sue for giving me a precious hour from her day to share her caregiving experience with us. Her situation with her husband is pretty extreme, but there were actually many elements I could connect with, such as having a very short horizon and only being able to focus on getting through each task at hand, or having a sense of being in a secret society where your own life seems so far away from normal that you feel like an outsider. I know Stu reminded us to not try to be superwoman or superman, but I have to say, she comes pretty close to it in my book. Navigating the bureaucratic healthcare system with the Ombudsman's office is not a walk in the park, let alone for someone who's dealing with the emotional, financial, and logistical challenges of becoming a full-time caregiver. She also talked about the importance of making therapy work for her and not accepting services that weren't effective. Rather than giving up, she managed to tackle each of these hurdles one at a time. And it's an incredible example of how resilient we can be when we need to care for the people we love. And that's a wrap for today. Please follow the podcast if you would like to hear more stories from cancer patients, caregivers, and family members. I would really appreciate it if you can leave an honest rating and review in Apple Podcasts or Podchaser so I know if I'm serving the interests and needs of you listeners out there. You can also share any feedback and suggestions directly to me by visiting talkabout cancer podcast.com. Thank you for listening.