Dr. Diane Reidy-Lagunes (00:02): It's a job you never applied for and probably never trained for either. You're a caregiver. Translation: You are the lifeline for a person with cancer. It could be for your spouse or a partner, your child, or a friend, or it could be none of these, but you're the only one who can help. It's one of the most important roles you will ever have to take on and it can be completely overwhelming. Let's talk about it. Hello. I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcasts.
Dr. Diane Reidy-Lagunes (01:04): Certainly some of the great unsung heroes in the cancer community are the caregivers, the folks who do what it takes to see that the patient with cancer is eating, getting their meds, having their needs met as they slog through all those different treatments. But man, it can be a hard job. Joining me today to help us understand this tricky and complicated role and maybe help us with some strategies is Jacob Meyer, a social worker and co-leader of the reach for caregivers program here at Memorial Sloan Kettering Cancer Center. He helps support our families and has seen it all. Jake, welcome to the show.
Jacob Maier: Thank you for having me, Dr. Reidy.
Dr. Diane Reidy-Lagunes: It's such a pleasure to have you here. Jake, I want to start, for someone new to the role of caregiver, can you just help us describe what that role even is and what they can anticipate?
Jacob Maier (01:52): It can be overwhelming at first, certainly. One of the first things that come to mind is being an advocate for the patient and being another set of eyes and ears as you listen to what's being told by the doctor and the medical team so that you can help the patient process what the treatment is and how to move forward, and just navigating the day to day of taking care of that person is so hard. And so being a caregiver can really just be being present with them, helping them take care of themselves and just get through the day-to-day of having a cancer diagnosis and trying to navigate what those next steps are. Certainly I think caregivers can feel that no matter what they do, no matter how many responsibilities they take on, their loved one is still going to have cancer. And that's one of the hardest parts of being a caregiver. Is that feeling of powerlessness.
Dr. Diane Reidy-Lagunes (02:44): The emotional roller coaster that takes place when you get this terrifying diagnosis is obviously sometimes just completely overwhelming and there's as you know, there's periods of intense shock and disbelief and confusion, but also a lot of pressure. So how does a caregiver who really, again, has taken on this enormous responsibility, deal with all of that and keep it together?
Jacob Maier (03:06): I think what you named there, those that cycle, as they say, they talk about the cycle of grief. You know, as we know it now it's not so much a cycle because those emotions can happen at any point in any order, denial, anger, depression, acceptance. They can even happen all at once. And I think it's important for caregivers, especially to have patience and compassion for themselves as they experience these feelings, because there is a real loss that's happening. And it's hard to name that because with the cancer diagnosis, you lose the life that you had planned. And so there's a real period of grief and adjustment that happens there. And I think for caregivers, the most important thing, and we talk about this all the time is to think about the concept of what is your oxygen mask. Because when you get on a plane, to use the metaphor, they talk about the safety procedures.
Jacob Maier (03:56): And they say, when that oxygen mask comes down in the case of an emergency secure your mask first, before turning to help the person next to you. And in a caregiver role, it's the same exact thing. And so often caregivers can forget how important it is to take care of themselves, the buzz word, self care. So I think it's really important to keep that in mind as caregivers go through and to give themselves permission to do that, because I think caregivers can feel selfish in doing that, but there's a real power in owning that you deserve care as well.
Dr. Diane Reidy-Lagunes (04:27): Absolutely. And I think that's an underlying theme throughout this whole episode. I want to introduce some of our patients, caregivers, that we interviewed to ask them as a caregiver, what their experiences were. Here's Phil, who really felt the shock of a role reversal.
Phil (04:44): Hi, my name is Phil. My wife is Cheryl. We have four wonderful children and Cheryl is an amazing mother and person and just the ultimate caretaker and guardian to our family. She was diagnosed with a tumor, the size of a softball on her pancreas. It rocked our world. We broke down, the doctors that we know gave us the results was in tears. I knew immediately I had to step up even though fear set in, but I knew I had to act strong for Cheryl and the kids. I just assumed the worst. I mean, Cheryl is the one that takes care of us. What am I going to do? First, I made sure the kids were taken care of through friends and family so I could focus on Cheryl. Second, I found the best medical care for her. I just always assumed Cheryl would outlive me. What am I going to do? The kids would be devastated. I mean, she's their rock. She's everything to them. She had a major operation, they removed a lot of stuff, but unfortunately there's some lingering tumors on her liver that we deal with every month with medication, but she's healthy. She's not out of the woods. So I still fear. I'm happy to say she's even though she's still being treated, she's doing great. And she's back to being the rock and the caretaker of our family.
Dr. Diane Reidy-Lagunes (05:56): So Jake, if you're a spouse like Phil, obviously he has, he explained you have to get over that fear of being terrified and scared, but then he mentions the weight of responsibility that kicks in. That's still there. The day-to-day life continues, the kids, the household, the job, he was fortunate to have family support, but what advice can you give caregivers sometimes don't have that family support. And how do you handle that feeling of double the responsibility now?
Jacob Maier (06:21): Well, I think certainly as I was hearing Phil's story, I've started to feel a little bit of that overwhelming sense of all the responsibilities that he hadn't been doing because he had his own set. There's these roles that we have in life and when the caregiver role happens, sometimes you need to take over a lot of those responsibilities. One analogy I use is to ask the question, how do you eat an elephant? Because sometimes these big problems feel like that. And the answer is one bite at a time, just thinking about what is that next bite that you can do. And sometimes it doesn't matter what order they're done, but to just take that one bite, put one foot in front of the other and to really reach out and ask for help in those moments.
Dr. Diane Reidy-Lagunes (07:01): Absolutely. And I think as a stat to just share, close to 60% of caregivers are women, as you know, many women of color. And when you look at the data that suggests that on average, they spend at least 40 hours a week caregiving. So that's a full-time job, right? So I think your advice on bite by bite trying to engage the people around you that can help is obviously critically important.
Jacob Maier (07:25): Absolutely. And I think especially for women and women of color, there's the hours that they spend every week, in addition to all these other duties being caregiver now, and then there's a 24/7 attack of racism and systemic issues that we are trying to address day to day, but that really can't be adequately addressed. And so there's an added layer of stress and depression that really does just make this role even more challenging and makes it even more important to be able to ask for help, to help alleviate some of that burden. But it is important to acknowledge that the role is different for everybody. And for some there's just added stratifications of challenges.
Dr. Diane Reidy-Lagunes (08:02): I don’t think we can also ignore the sort of forced isolation of the pandemic. Could we talk a little bit about that and what you think caregivers had to contend to sort of that added layer of fear of the patient with cancer, potentially contracting COVID and what those risks could have been. And again, that sort of added layer of emotional on that roller coaster.
Jacob Maier (08:21): Before COVID being a caregiver was an incredibly isolating experience. One in which I've heard caregivers say, it feels like the world happens around them and they are also in the world, but not quite there; not able to engage in the same way. Friends and family go on doing the things they were doing while caregivers are living in an alternate reality where the person they love is so sick. And I think that the COVID pandemic has really exponentially made that experience more challenging and more isolating. And so I think it's important for caregivers to understand that it's okay to feel isolated. It's okay to feel afraid because those are natural responses to a pandemic.
Dr. Diane Reidy-Lagunes (09:02): Absolutely. I think one of the roles that the caregivers believes they're responsible for is sort of being that cheerleader. Let's hear from Kendra and what she says about the complicated nature of that role.
Kendra (09:14): Hi, I'm Kendra. And for the past three and a half years, I have been the primary giver for my husband, Charlie, who is diagnosed with stage four, young onset, colorectal cancer. Nothing prepares you for receiving that news or what to do after. It's mostly just learning by doing, but two of the biggest things I've learned as a caregiver are that it's okay to not be positive or optimistic all the time. And that you really have to take care of yourself too. In the early days of treatment, the chemo was really, really tough. And I would just tell Charlie it's okay. It means it's working, but then it stopped working. And when that happened, I felt like it was my job to be our cheerleader, to keep up his fighting spirit and you know, really just encourage him to keep going. But I learned pretty quickly that that wasn't serving either of us and too much positivity can really be kind of toxic.
Kendra (10:15): Sometimes you just have to sit with some bad news and feel it, and it can really feel defeating. You just have to hear it from your oncologist and say, yeah, this sucks. Maybe cry a little or a lot if you're like me, but then you kind of just get it together. But to keep going, you also, from the caregiver's perspective, really have to take care of yourself. You can't pour from an empty cup. It's so important to know when you need a break, whether, you know, that's to take a few minutes to go for a walk outside or even for a full weekend away with your girlfriends to just really recharge. The truth is your loved one is so happy when you take that time and you recognize that you need it. And they're just really, really happy to give that to you for all that you do for them.
Dr. Diane Reidy-Lagunes (11:06): Certainly, again, that theme of taking care of yourself. But I thought it was so powerful when she said too much positivity can be toxic. What do you think about that? And do you hear that from other caregivers?
Jacob Maier (11:16): Absolutely. I've heard it called the cult of positivity, toxic positivity. These are all things that caregivers definitely experienced when people say, be strong, you have to be positive. And that can be helpful and there's a time and a place for that. But sometimes it's important, like Kendra says, to be where you are, and to be a cheerleader to help the person you're caregiving for get through is important to support them emotionally. But sometimes the reality of life is that things aren't good, things are hard and it's important for caregivers to feel that they have the space to do that, to just be with what is. There's a massive challenge in front of caregivers and facing the reality of it is important. Sometimes that means being there with the patient when there is bad news. And when things are just hard and just letting that be as it is. I liked also that Kendra talked about the oxygen mask, taking care of herself and not being able to take from an empty cup. I think Kendra is right on there.
Dr. Diane Reidy-Lagunes (12:10): Absolutely. You did allude to that MSK has support services for caregivers. Any other opportunities, any other organizations for those that may not be at MSK for caregiver support?
Jacob Maier (12:21): Absolutely. Cancer care is a great option that has caregiver support groups, which I believe are free of charge as well. So cancercare.org. The cancer hope network will connect volunteers to caregivers. So caregiver volunteers to other caregivers. The American Cancer Society always has good opportunities to support caregivers. I think those three are some of the best and there's also cancer support community, part of which is Gilda's Club here in New York City. They have a lot of free social work services, and now most things are offered virtually. So I think those are also good opportunities for support there.
Dr. Diane Reidy-Lagunes (12:57): Super helpful. Thank you. I want to hear from another caregiver who talks about the importance of preserving your relationship. Let's listen to Paula who was talking about her partner.
Paula (13:08): My name is Paula, and I'm a caregiver, which is an official term that gives you access to records and things like that. But it's a term that is so encompassing. It's almost overwhelming at first. What did it actually mean? I had absolutely no idea when I embarked on this journey. How far was I supposed to go in being involved? What did I need to know? I certainly wasn't prepared for this. It's my life partner. And I've learned it's a love journey, but a journey has boundaries. Journey has limits. What are those boundaries? I had again, no idea. How far should I push my opinion? And I learned that I didn't have to do everything. That that's not what being a caregiver is. You are there to support the patient in every way that you can, based on your original relationship with that patient and trying to preserve the quality of that relationship.
Paula (14:00): I also learned it's not all on me. There's a phenomenal team around all of whom are working for the patient, my significant partner, the person I love so much. And my job is to smooth things, to remember key things, to keep track, to help, not to take over. It's a tough balance at times. I try to be governed by respect, trust, and love. And that's what I've learned, that to give care is not to become a clinical agent. It's not to become a substitute for the nurse. It's just to be careful about respect and what the patient needs that only you know.
Dr. Diane Reidy-Lagunes (14:36):
Jake, Paula emphasizes the importance of maintaining your relationship, that intimacy and the romantic part of a relationship. Any recommendations on what a caregiver can do in that sense, given again of the overwhelming other responsibilities that they're feeling during this difficult time?
Jacob Maier (14:52): It’s such a real challenge for caregivers who are in an intimate relationship with the person they're caregiving for. And I also want to acknowledge that for any caregiver, they're not always caregiving for a loved one. Relationships are complex. And so I don't want to assume that everybody's caring for a loved one. But having said that, I think when it comes to an intimate relationship and caregiving for them, it's really important to define what intimacy is, and with a diagnosis that may have to change, maybe temporarily, but to think about how intimacy can be expressed in the relationship and to be conscious about that, and kind of making sure that it happens. Maybe planning a date night, even if neither party wants a date night, but really saying, we need this space to not talk about cancer, to not be a caregiver, patient relationship, but to be partner and partner, and to have a date night, whether that's going outside or being on the couch with popcorn and a movie, but it can be so important to be open to the shift in what intimacy can be like. And to be intentional about maintaining that part of the relationship as well. Cancer as a disease and as an experience has a way of pervading and taking over everything. And so as a caregiver, it can be really important to, like Paula said, to enforce that boundary of where the relationship is to really feed the intimacy, which again, may change throughout and to be open to that experience.
Dr. Diane Reidy-Lagunes (16:15): Any tools or skills that may be helpful, like when you do need some sort of help for yourself or for the patient?
Jacob Maier (16:21): I think in terms of just getting through a stressful moment and managing anxiety, there are some simple grounding tools that anybody can use. One of my favorites is just called the 5, 4, 3, 2, 1 method. And that's where you use your five senses to ground you in the moment. Because when we're anxious, when we're feeling panicky, we're usually up here, we're in our head, we're in our thoughts. And so using your senses to ground you is so helpful and simple. And so it's really just taking those five senses and picking in no particular order, five things you can see, four you can hear, three you can smell, two you can taste, and one that you can touch, and you can switch that around. And I think you'll find if you try this exercise, that by the time you've finished that last step, you are more in tune with where you are in this moment and less stuck in trying to predict the future, trying to problem solve any problems that haven't come up or are here,
Jacob Maier (17:16): or you could see that there's an endless way that anxiety will take you out of the moment. So I think that's one helpful one. Even just watching your breath and just breathing in and saying, I am breathing in, breathing out and saying, I am breathing out, can be so helpful to again, ground in the moment. And when we're anxious, we're also not breathing as deep as we probably should, and we're not getting as much oxygen as we need. And that fuels the anxiety. So really taking deep breaths can help bring that mood up just by working with your biology.
Dr. Diane Reidy-Lagunes (17:46): I think two emotions that happen for many of our caregivers are both guilt and anger. Can we talk about that?
Jacob Maier (17:53): Yeah. Those are some really uncomfortable emotions, especially for caregivers. And I think feeling angry can reinforce the guilt about being angry. The most important thing to do would just be acknowledged those feelings. Just to say, this is what I'm feeling. And hopefully to be able to share that with somebody, with a social worker, with a friend, with a fellow caregiver, and to find ways to express that. Anger is understandable to be angry at cancer, to be angry at the person you're caregiving for is also very common because it puts you in a scenario that you never wanted to be in. Neither of you. And I think expressing that anger and acknowledging it is so important, even if it's just burying your face in a pillow and screaming, getting some of that energy out can be so helpful. And again, acknowledging and being compassionate with yourself that this is a part of the journey. And I don't think any caregiver has gotten through without feeling guilty or angry. And to know that this will pass. It's common, but it's uncomfortable.
Dr. Diane Reidy-Lagunes (18:47): I just want to briefly ask about one, a very, very important caregiver role, which is when the patient is your child. You know, I've had several friends that sadly have had to be in that situation, and it is just a whole new level of, of terrifying. Obviously it's, it's our job as parents to protect our children. So any additional recommendations for the parent that has to go through this treatment for their child?
Jacob Maier (19:12): Is a really, really hard role on top of just being a challenging role as a caregiver, to be a parent as well. And I think it's important to remember that there is no roadmap for this and that a lot of it is trial and error and doing the best you can and acknowledging that you are doing the best you can, and that taking them to receive care and being with them and being compassionate, holding them and their fears is so helpful. And I think children want to feel like they know what's going on. They want to feel involved in decisions, even if they're not able to make those decisions fully for themselves. And I think it's important to really be honest with children as best as we can so that they don't have that anxiety, is something being held back from me? Is, is there something I don't know that they're not telling me? Because children can sense that.
Dr. Diane Reidy-Lagunes (20:00): How much can you ask of their community?
Jacob Maier (20:03): I think sometimes friends and family just don't know how to help. And I think that sometimes caregivers need a lot of help. And so there are great tools online to help convey information and also ask for real logistical support. For instance, there's one website called CaringBridge, and that's basically a blog where caregivers can post updates for anybody who wants to read them as long as they have the email addresses. And those updates will go straight to the emails so that the caregiver doesn't need to send out a thousand texts every time there's an important update and can really help keep people who need perhaps too much information, keep them satisfied too. There's also websites like Lots of Helping Hands. And that's one where you can actually post things that you need, whether it's an item or a service, like if you need a meal on Wednesday and you have friends and family who are listed as supporters, you can find ways to get that support from the community and people who maybe want to help, but don't know how, can connect with you that way. And also just stay in touch and know what's going on and feel more involved. And so I think it makes asking for help easier and it makes giving help easier.
Dr. Diane Reidy-Lagunes (21:09): Jacob Maier, social worker, and co-leader for the reach for caregivers program at Memorial Sloan Kettering. Thank you so much for being with us today.
Jacob Maier: You're very welcome. It's my pleasure.
Dr. Diane Reidy-Lagunes: I learned a tremendous amount was really helpful. Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or just send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.