An Interview with Steph: Love, Loss, and the Weight of Care
On navigating a decade of cancer treatment, tireless advocacy, and the importance of advocating for yourself along the way.
Steph’s story captures the emotional complexity of caregiving, and how historical family dynamics, namely her outsized responsibility within her family unit, impacted her role as a caregiver. Her sandwich generation experience began when she was in her thirties, raising two young children when her mom was first diagnosed with breast cancer at age 50. For the next decade, Steph found herself balancing motherhood, partnership, the relentless demands of caring for her mother through recurring cancer diagnoses and, later, supporting her father through grief and loss.
Numbness and Memory
Steph: This was pretty wild, going through your questions, because I’ve really avoided all of this. Not avoiding it in a conscious way, more so that I haven’t been able to access it. I would try to access it in therapy, and I just would feel nothing, or I couldn’t tap into what the feelings were. And doing this, I was able to do so quite a few times, and be back there and remembering some stuff that was pretty rough. But I think it’s good. It kind of opened a portal for me.
Lissy: That makes sense. My number one goal with this Substack is to help people feel less alone. I think that feeling of numbness around the process is so common, you know?
Steph: Yeah, I was numb then too. I don’t even know that I ever really processed it. So, we’ll see what happens here.
Lissy: Let’s see what happens. Okay, so I wanted to talk to you because your experience in the sandwich generation is notable in that your mom was diagnosed with cancer when she was so young. So you experienced what the people in the sandwich generation feel, but in a really different way than if your parent was slowly experiencing memory loss and other signs of aging. Can you set the scene around how old everybody was when she was first diagnosed?
Steph: It was 1996 when my mom was first diagnosed with lung cancer. I was 30, and my mom was 50. My kids were 7 and 3, and my little brother was just 14. And for the next 9 years we were dealing with multiple reoccurrences of the lung cancer and surgeries and COPD, and this went on until she passed when she was 59, and I was 39.
Lissy: Wow, so all of your 30s were spent helping her off and on around this.
When Roles Reverse
Lissy: Can you tell me about your relationship with your mom, and what it looked like after her diagnosis?
Steph: She was a very young mother, she was 20 when she had me, and then my sister 2 years later, and my brother 13 years after that. When I was a child, some of the boundaries she set didn’t make sense to me, and I would push back a lot. And when my brother was born, I took care of him a lot, and I loved it. But in retrospect, you know, every weekend, I’m babysitting at some point. And then as I got older, and looking back I now realize that I was in the parental role when I was young. As I became an adult, and then certainly when I got married, she leaned on me for certain things, and looked to me for the final approval of things, in many ways. They just depended on me a lot.
When I became a mom, we had that in common, and we enjoyed doing a lot of the same things together. And she was a friend, but at the same time, I kind of was always the mother figure in our relationship. And then when she was first diagnosed our relationship didn’t change that much, because she was very stoic about it. She had surgery to remove the cancer, and didn’t have chemo and radiation. So we thought that she was in the clear.
Anger, Empathy, and the Complexity of Care
Steph: When things started to get a little more complicated in our relationship was when she continued to smoke after her surgery. She really closed off then, because we couldn’t talk about it. She didn’t want to talk about it. And she was very defensive around smoking and in general about her overall health.
The cancer came back in 2001. At that time I was 35, she was 55, and my kids were 12 and 8, and that’s when she had radiation and chemo, she went through all of that. And then she still continued to smoke. And in between these different reoccurrences of cancer, she was in and out of the hospital with pneumonia and bronchitis, and everything just got worse and worse and worse.
Things became more complicated as she became more sick. It really became challenging, to the point where she was sneaking smoking. At one point, I caught her smoking right after she’d gotten out of the hospital. I had been with her in the hospital for a week. And so I was really angry, because I had just spent all of this time away from my family. Again. And she hadn’t even been home from the hospital for a day, and she was smoking again. My reaction was not very kind at that moment.
Lissy: I mean, I think it makes sense that anger would show up. You’re sacrificing time with your kids to go support her, and then for her to do something that feels like a totally counterproductive thing as soon as she’s released. I think it makes sense that it would have tapped into this feeling of how dare you? I just spent the whole week not being with my family, to support you.
You’re trying to play into these roles that are both comfortable but also puts so much responsibility on you. But then she’s responsible for her own decision-making, and you’re not approving of her choices. I could see that just creating a lot of confusion.
Steph: Yes, it was confusing. And frustrating, because I wasn’t aware of the different attachment styles, or any of that. I was just going purely fueled by emotion. And so at times it wasn’t pretty. It was really difficult to navigate, because I had so many different emotions at this time. I was really angry, I was sad, I was missing my kids, worrying about my kids. It was just that it became really complicated. And that was towards the end of her life.
Fighting for Clarity
Lissy: One thing that people note as being useful in supporting an aging parent is getting access to their parent’s patient portal, getting read up on what happens at doctor’s visits, test results, that kind of thing. But this wasn’t a thing in the 90s. With your mom’s care, you were so involved and your opinion really mattered, but did you feel you had the information you needed to even be able to know what was happening?
Steph: I can’t even imagine what a difference that would have made, for me to have been able to get up to date and comprehensive information in real time. I could have had the opportunity to talk to my peers, to talk to other professionals, get other opinions.
It was very hard to navigate because when she was in the hospital, the doctors would come in randomly for a few minutes, and I would try to get the information out of them, but I’m getting just bits and pieces. And so I would try to get things from the nurses, but really, I was making it up as I went along.
I spent most of my time figuring out what medications she was prescribed on any given day, and then making sure she was getting them. And figuring out what’s on the schedule for today, trying to find out what’s supposed to be happening. And then I would make sure it happened. Questioning things if they were not in line with what I was told, just really keeping the train on the tracks.
I wish that I had had power of attorney, since my dad wasn’t able to handle it. So that I would have been given all the tools to actually handle it, instead of having to ride in the middle, trying to help him do the right things.
Tireless, Painful Advocacy
Steph: When she went into the hospital for the last time, my dad was going to drive her, and he realized he didn’t have time, so he called 911. They took her to the hospital, and they resuscitated her in the ambulance. My dad called me from the hospital, and we thought that was it.
The whole thing was a month of her being in the hospital. She was in the ICU for maybe two weeks, and then she got stable enough to move into whatever the next level down is, but she was still getting worse, deteriorating rapidly. She was near the end of her life, and for some reason they were constantly doing bloodwork. And I finally said, what are you doing? What are you trying to figure out? And I was told that she was no longer making plasma. And that they were giving her plasma infusions.
And I talked to the doctor and said, if she’s no longer making plasma, and you don’t give her plasma infusions, does that mean she will die? Does she need these plasma infusions to survive?
And he said, yes.
And I said, then why are you giving them to her? Why are we prolonging the inevitable? I told the doctor that under no circumstances should they give her any more plasma. And I told my dad to sit with her, and under no circumstances, should he let them give her a plasma infusion. And I was going to go home, take a shower, and come back.
I came back, probably 2 hours later. And they had given her another plasma infusion. So then I really felt like I couldn’t leave, because I couldn’t count on anyone else to advocate for her in those moments.
Lissy: That is such a painful thing to have to advocate for, to ask them to just stop with the interventions that are prolonging her life. It’s such a hard thing. I think it’s amazing that you were able to make that call, and have the clarity to say stop! Because I think a lot of people would not have asked about it or realized what was happening. There are a lot of ways where it could have been drawn out for so much longer if you hadn’t been such a ferocious advocate.
Steph: Yeah. Whenever she was in the hospital, especially that last time, my main concern was to alleviate as much suffering as possible. Because we knew she wasn’t coming out of the hospital. We just didn’t know what it was going to look like.
Crucial Pillars of Support
Lissy: And during all of this, your kids are so young. You’re holding a lot. I’m wondering what support was most helpful to you during this time?
Steph: The thing that was absolutely crucial was knowing that I could count on my husband, Steve, to take care of everything that I wasn’t taking care of, so I could completely focus on what needed to happen for my mom. I could focus on being her advocate, and Steve would make sure everything was taken care of with the kids. I don’t know what I would have done, if I didn’t have that person in my life.
Because there was nobody else who could have done that. All of my friends had or were having kids. I didn’t ask for a lot of support, because my peers were all in the thick of things with parenting.
I did have my best friend, Nicole, to vent to, mostly about my challenges with my dad and the doctors. And that was wonderful, because I didn’t want to burden Steve with that. It was very helpful to have that sounding board. She just held space for me, she didn’t even have to say anything. I just needed to get it out, you know? It was really helpful.
A couple of times friends dropped off lunch for me at the hospital. They didn’t stay, they didn’t get involved, they just wanted to drop the lunch off. It was nice to have that. It would have been helpful to have had more of that, because I was not taking care of myself.
Carrying the Weight After Loss
Steph: After my mom died, my dad was not coping. He was distraught. I was constantly checking on him, inviting him over. I had to help him move out of his house, because he didn’t want to live in the house anymore. Right after she died, he started this mantra, I gotta get out of this house. She died in January, and he moved into his new townhouse in the beginning of August. I had to pack up the whole house, go through everything. He was incapable of functioning, really.
Lissy: The mantra of I gotta get out of this house reads to me as I gotta avoid these feelings. And for you, it was yet another demand on your time and energy that kept you from being able to slow down and process any of this as it’s happening.
Steph: Probably. I mean, the kids would have been 12 and 16 at this time. So much stuff is happening, Lissy!
Lissy: You have this whole other part of your life happening that is more than full enough.
Steph: So we just tried to include him in as much stuff as we could. But this went on for about two years, this really serious dependence on me. And then it slowly faded a bit. You know, his friends were reaching out to him and checking up on him. But he wasn’t letting them see his completely disheveled self. They didn’t know. He kind of put on the strong, stoic thing with them.
Lissy: But he didn’t do that with you, because he felt comfortable and safe with you. But then you were the only one who got to see it, and that’s such a burden.
Steph: It really did fall on me.
Lissy: And I think if you had been just one part of a full team supporting your mom, and you could show up and then come home, you could slowly process and tap into the anticipatory grief that happens when someone’s health is declining, reaching the end of life. And you can start to do that work as things are happening, experiencing that grief in chunks as it comes. But when you feel you need to show up for everybody else, there’s no space for that, you know?
Steph: Yeah, oh, definitely.
What Could Have Been Different
Steph: The main thing is, I would have been more compassionate. Because I was really frustrated. At the end, every day was so brutal. I was getting really frustrated, I wasn’t mean, but I wasn’t as kind as I could have been. If I could go back, I would tell myself to be more compassionate. But really, I don’t know that I could have done anything differently.
Maybe if I had other things in place. I mean, if there was an advocate who I could have trusted to advocate the way I would advocate, so I could get a break? I think that would have changed so much of the whole experience for me, and for her. And she would have felt more loved. Because I just had nothing left. I was on fumes.
If I had somebody else who I could say: I’m going to leave you, I’m gonna go to sleep. These are the things that are going on. I mean, that would have been absolutely invaluable.
Lissy: That makes sense. You had to be constantly on, as her advocate, in a way that kept you from being able to tap into just being her daughter. And it sounds really lonely, to be the one who needs to always be alert and on it, and making sure that things aren’t happening that shouldn’t be happening, and that she has what she needs, that she’s not suffering. It’s a job in itself.
Steph: Yeah. And thinking about things I wish I could have done differently, I would have gotten more support for my family. Because I was also worrying about them. So while I’m worrying about her, I’m worrying about my kids emotionally, not their needs, but their emotions. And I can’t be there for them, and I want to be there for them. If there had been people there to look after my family and make sure they were okay, that would have been really helpful as well. Because that was a whole other set of demands that I put on myself.
And then I really could have benefitted from someone just to make sure that I was eating, you know? Because I wasn’t. I mean, I was going to the cafeteria and grabbing something and running back into the room. I’m sure I went days without eating anything other than a donut. So that would have been helpful. Making sure that I’m taking care of myself.
Lissy: Right. And I think that speaks to the unique thing that happens when you’re navigating this while also taking care of young kids. Your husband is super supportive, but he’s working and he’s taking care of the kids. So if the kids had been older, then he could have regularly shown up and said Steph, you haven’t eaten today, here’s a sandwich. Or, Steph, I can stay with your mom, you go home now. But when you have these tiny kids, you don’t want to disrupt the rhythm.
Steph: Yeah, we wanted to keep things as smooth as possible for them. And especially at the end, they are both in such delicate years of high school and middle school. I was so worried about them, and how they were coping.
Looking Ahead: What Caregiving Teaches About Aging
Lissy: I’m wondering how this experience with your mom impacts the way you look at your own aging, and your own feelings specifically around end of life?
Steph: So, my biggest takeaway is: if I was terminally ill and was not able to have any quality of life, I would do everything I could to ensure that there is no question about what I want. I would have a DNR, explore options for medically assisted suicide, make sure I have a power of attorney in place. And documenting different circumstances and what I would want to have happen. So that it was not in my children’s hands.
Lissy: I think that’s such a gift to give your family, so they don’t need to shoulder the decision-making. They can just shoulder their emotional experience of it. It makes sense that that is what you’ve doubled down on. Not wanting it to be any sort of question, how you want things to go down.
Steph: I want it all to be crystal clear.
TL;DR: Biggest Takeaways and Reflections for Caregivers
Compassion over perfection. You won’t always show up feeling perfectly regulated, patient, and calm. And that’s okay. Show up imperfectly, and then show yourself patience and understanding. Keep trying to communicate clearly and with love, and repair when necessary.
Advocacy takes energy — and a team. Medical systems can exhaust even the strongest caregivers; no one can do it alone. Utilize the support of patient advocates, friends who get it, or disease-specific websites and resources.
Dual Roles Exacerbate Exhaustion. Showing up as both the advocate and the daughter can create feelings of emotional numbness and isolation. Make sure you take time to tend to your emotional needs, and use resources available to you.
Plan ahead to Increase Clarity. DNRs, power of attorney, and clear end-of-life wishes are acts of care for those who love you. It’s never too early to start documenting your wishes. Wondering where to start? Check out Five Wishes or Tumbleweed.
Tend to yourself, too. Your own well-being sustains your ability to show up for the people you love.
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Are you interested in being interviewed for Stress & Love? I’m looking to interview individuals who have gone through the sandwich generation, as well as those who are in it as we speak. To clarify: you don’t need to be a primary caregiver to be considered part of the sandwich generation. If you are supporting your parent emotionally, logistically, financially, or otherwise, and you are also navigating raising your own kids, then I would love to hear from you!
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