Tatiana Fincham: Hi, I am Tatiana Fincham and I'm a senior social work counselor here at MD Anderson. And I am joined by my fantastic colleague Mary Dev, who is also a senior social work counselor here at MD Anderson. And this is the Cancerwise Podcast. Hey Mary, I'm so glad that you could join us. We are here today to talk about how to cope when your parent is diagnosed with cancer. And we know that it's hard for a lot of young adults who are parents themselves, juggling not only their own work obligations and their family obligations, but now being thrown into the role of caring for their parents.  

Mary Dev: Thanks, Tatiana. That's such a good topic to to discuss today. I actually have personal experience with it. But before we get to that, I'm just curious. You have a lot of experience in the inpatient setting, but also the outpatient geriatric setting. What are some things you've observed and issues that you've observed with our patients and their caregivers as they go through the process of getting treatment? 

Tatiana Fincham: Well, thanks for asking. I've noticed a lot. A lot of times it can be a sudden onset. Mom and dad were doing well. They were independent and suddenly they're going to need a lot of help. They're going to need a lot of support. So, I feel as though something caregivers may need to pay attention to is not only the logistics, like, how are we going to take care of mom and dad? How do we navigate the health care system? What are the legalities of all of this, but also paying attention to not only the patient's mental health and well-being, but their own as well. There can be a lot of surprises. Being a caregiver, I always compare it to, compare it to a marathon, not a sprint. There can be a lot of grief that comes along with it. So, for example, mom and dad were doing well. They were independent. They were the ones who took care of their child since birth. So, the idea that they have to accept help or that they might lose part of that identity of being the caretaker and the caregiver, and now they have to receive the help. There can be a lot of grief in that process, and also for the adult child as well. The adult child may be like, 'Man, I've always leaned on mom and dad for advice, for support. They've always been someone who's been very strong. They've helped me throughout not only my childhood, but most of my adult life, and now I have to take care of that, take care of them and understand how to respect, there, still respect their autonomy. You know, make sure that I'm not just taking power and control away from mom and dad and really, you know, exasperating the grieving process.' Along with that, I think it's making space for tolerating anger because that's a part of grief. And, you know, diagnoses and treatment plans and side effects can really affect the way we feel about ourselves and our situation. And sometimes anger can get displaced. But, you know, if if it's affordable or if people have access to it. Individual therapy and family therapy can be done for both the patient and the caregiver, so that they may be able to adjust to like a new normal, especially if it's going to be an ongoing thing. As well as navigating the logistics and the safety planning where Social Work we can, we can be really helpful in that regard. Speaking of which, navigating the the logistics. I wanted to touch back on your personal experience. Mary, can you tell me a little bit about what you've, you went through as social worker and also as a caregiver? 

Mary Dev: So, I went through a lot of the points you just touch based on. My mom was diagnosed with leukemia a few years ago. She is doing well, but at that moment I think our family was shocked by the diagnosis. She was in the hospital for a long time. We didn't know what was happening for many days before a diagnosis was formed. Through that long hospitalization, she actually got very debilitated, and so it ended up being to where we had to consider going to a skilled nursing facility for rehab. But when she went home, it was quite clear that that was not going to be a safe plan for her to be there. My dad would not be able to manage that. And so it was even though I have all these years of experience, when you're put on on the other side, the experience helps, but you're still kind of a deer in the headlights trying to figure it out. And because of the knowledge base, I was able to figure it out, but it was still not an easy process, kind of what, like we were talking about grief and all of that happened. But it's also managing your, the patient's grief, the, my dad who was the primary caregiver's grief, and kind of my own, my own feelings about that. But we ended up having to, we hired help at home. And I think it's important as we go through this to kind of understand medically, what that means for the patient in terms of what our health insurance covers. It may cover a lot of the medical costs, but the extended care may only be covered to a certain point. And I think maybe a lot of people don't understand that is left into the private pay realm of things. And so people need to plan for this. And every family is different so I think it looks different for everybody. But in my mom's case, it was clear that even with private duty care at home, it wasn't a good plan because it was too much for my father, who's also elderly, to manage the care. And so, we ended up doing an assisted living for about a year. All this happened on the back end of COVID, which also complicated many things. And so, it was navigating the back end of COVID, her diagnosis and literally her practical needs like what did she need to do to survive day to day. I would say that I had big help from my father, who was my partner in that. I had big help from my house, my, my husband and my kids. And then I also had great coworkers who supported me at work. So, it's, it's important to understand that you don't have to do this all by yourself. There's help in many different forms. And so, to figure out where you would like to accept the help from, and that makes it a lot easier as you go through the process. If you don't try to do everything on your own. 

Tatiana Fincham: I think that's such a good point. Navigating our support system is huge, and being able to ask for help is huge because we're only one, one person and there's only so many hours of the day and we need to rest and recharge. And not to mention, like a lot of people are sandwich generation, where they may also have children that they have to take care of like I know you did, Mary. And being able to know that neighbors, friends or families can help, or how to navigate the community resources that you may not be aware of like are there transportation resources? Are there, you know, resources to help somebody navigate their medication? Or is there resources to help people, you know, financially? All of that is really huge. What I really like about our job is that we can help people sort of prepare for that what they they don't know, what they don't know. So, we can help fill in those gaps, and then then they can have the questions to advocate and be there for their parents. 

Mary Dev: Yeah, I was a total open book in my mom's case because I don't live in the state, same state as she does. And so, I don't know anything about the local resources. So, I looked to them to give me information, but I also made sure I asked questions. And then you have to tweak the plan along the way. Just because you have a plan, doesn't mean that that's the way it's going to be, because somebody's condition can literally change on a daily basis. And so, I think it's okay to keep going back and asking questions. And making sure that at the end of the day, you want to make sure you're advocating for the patient. In the case of my parents, my dad was there, but he, I would definitely say was also shocked. And so, making sure I'm advocating for my mom, my dad, and if at the end of the day, just making sure she's she's going to be in a good place. 

Tatiana Fincham: Oh, yes. You have to be a strong advocate. And I think one of the best ways to do it is to make sure that we are able to help people answer these questions before a crisis happens. You know, we never know when an accident or a diagnosis may hit. So, I think having those hard conversations where we talk about advanced directives and advanced care planning, you know, I know MD Anderson's really good about being able to have Social Work reach out to patients, and we can just go ahead and say, 'What is important to you, what does matter in these different unique scenarios? What would you like your friends and family to do?' And I think that can be really beneficial. Also, helping people navigate not just the emotional side and taking care of people within the home or getting them set up with the facility, but work obligations. What does family medical leave look like? Is that something that's offered? Do you guys have long term or short term disability, things along those lines? And that's where I think really being able to reach out to, to us in Social Work can be really beneficial. So, Mary, it sounds like you really lived what's called the sandwich generation experience, where you're not only taking care of your kids and you're taking care of your work obligations, but then you find yourself in a caregiver role for your mom and then also supporting your dad while he's in this new caregiver role. How did you balance all that? Not only logistic-wise, but emotionally and mentally? What helped? 

Mary Dev: Sure, yes I am the definition of a sandwich generation. It refers to middle-aged children who are raising their children, plus having, you know, to take care of their parents. My kids were older, so it made things a little bit easier. And I had good support from my husband. So, while I was traveling to go help my parents, I was at peace that the house wasn't burning down. But to help my parents how I tried to do work, work, life balance and working taking care of the kids and them, I went through all the emotions, but I think I, too, was in shock. And it's amazing how as a professional with all these years of experience, how you, too, can be in the corner going, 'What just happened?' 

Tatiana Fincham: Yes, I think recognizing the fact that we're just human, and even though we're lucky because we have the inside knowledge, it still can hit us out of nowhere. And that can be very shocking and traumatic. And, you know, it's, it's our mom and dad. There's nothing more personal than that relationship except for maybe with our kids. It sounds like knowing that you had your husband's support you were so grateful to know, like you said, he's keeping the house together, making sure nothing's burning down. If you were talking to a caregiver who had minor, really little ones, and they they need mom to drive him around, take them to school, make snacks after class, what advice would you give them since the little ones also need full-time care as well? 

Mary Dev: Yeah, so my kids weren't quite driving age, so they kind of needed some of that. But I was still the lady who made all the lunches and cleaned up and so, and did laundry. And so, I basically had to assign responsibilities. If the kids are super little, though, obviously they can't help out with that. And so, you know, obviously this, hopefully your partner or if you don't have a partner, other people, friends, extended family members need to, need to be able to step in to take care of the kids. Because when the kids are that little, they really need consistency. It's not good for them to have their routine messed up just because there's other things going on because that's kind of how they feel safe. So, it's really important to keep their routine as stable as possible. And if there's any changes kind of explaining what the, you know, changes are and thank goodness for FaceTime because that, you know, can help, you know, at least touch base with the kids whenever they need to. But yes, it is harder when they're little. But I think, you know, talking with your, your partner or if there's no partner, your support system like, 'I need help on both ends. I need help with my parents. I need help with the kids. What what what can you do to help me?' You know, and sometimes just asking the question and seeing what happens if you have, you know, and then coordinating with the daycare or nanny or, but, you know, that everybody's situation is different. So, that may not be even available. So, just kind of going back to your point of looking at your resources and support system is so important. In terms of supporting my parents as we went through this, I literally found myself navigating two different levels. My, my mom, who was the patient, addressing her needs, which were very different because she doesn't feel good and she's in the hospital. She's then in a facility like her whole world is changed upside down. And then supporting my father, who is kind of on the sidelines. But, you know, financially he has to figure out, okay, what you know, what needs to be done. And kind of, he was taking over that aspect and so, kind of coordinating both their needs on very different levels. But I find that no matter how much experience you have, when it's your family, it's still a very difficult experience. But it's nice to have support. Yeah. 

Tatiana Fincham: Mary, you're incredible. And while you were talking, it made me think about what a gift you were giving your children on multiple fronts. One, that they got to see how loving and supportive their family is, and how it's okay to be vulnerable and ask for help, and how to step up and care for people and express love in a caregiving role. And I think sometimes, you know, with all the need that caregivers have to feel and balance, they may forget that they're presenting such strength and gifts to the newer generation to show that this is how we help each other. This is what it means to have a family. This is love. 

Mary Dev:  Yeah. So, those are conversations I've actually had with them all along. And the reason is, you know, my family has migrated to this country. And so, our family in Houston is not that big. And so, in Houston it's just the four of us. And so, you're right, teaching them that, you know, just because that's the case, we still have obligations and we have to do something to step up. So, maybe when I'm old, they'll take care of me someday too. 

Tatiana Fincham: It's always that that flow. Sometimes we're the ones who provide the support. And then, then we get to receive this support and see it as a gift. Yes, I love that. Another aspect when it comes to navigating finances and employment is taking on another courageous conversation with maybe our supervisors or our, our, the institutions or agencies that we work at. How would you recommend somebody start that conversation, or what tips or tricks would you recommend in that if somebody needs to approach their employer? 

Mary Dev: I think there's no right or wrong answer on that. And the reason is everybody has a different workspace. Some people find their employers more supportive than others. So, I think that's important to kind of consider when you, when you disclose information, because once you've disclosed it, it's out there. But for the purpose of applying for Family Medical Leave Act, every employer over 50 employees needs to offer it. And so for the purpose of that, you can ask to apply for it. Your employer technically does not need to know the diagnosis or what's happening, but a physician does need to fill out the form, so I'm sure they're going to see that at some point. You don't need to discuss it too much. But, but if you feel comfortable, me personally, what I found is when I did choose to disclose - but again, I have a supportive work environment, you know - I actually got more support from all levels. My colleagues, my, my immediate work, my department. In general, everyone around me was more supportive, like, how can I help you? 

Tatiana Fincham: I, I'm very glad to hear that. And you know, it is true. I think everyone knows their own situation best. And being able to assess how much I disclose, when to disclose, or maybe even talking to the social worker about your specific situation could be helpful. And then seeing if there's community resources that provide guidance navigating employment. 

Mary Dev: Yeah. Yeah. Do you have any specifics for community resources that you would recommend? 

Tatiana Fincham: I do know here at MD Anderson with the Adolescent and Young Adult clinic, usually, young adults are just branching out into the employment world, so we are lucky to have a wonderful vocational counselor, Heather DeRousse, and she's fantastic. And there are other community resources that can provide education about your rights, and also about how to navigate these conversations. You know, I think we're lucky because when patients and caregivers connect with us, we can slow down, do a little research and see what would be appropriate for them. 

Mary Dev: The other thing I think that's really important is as a family member is to, as you kind of go through this taking care of, you know, your family while you take care of your parents, make sure you take care of yourself, too. 

Tatiana Fincham: Yes. Yes. 

Mary Dev: And so, it's easy to forget. In fact, a lot of caregivers are considered unseen patients, right? And so, make sure you're taking care of yourself. And back to your point of kind of looking at it like a marathon, because you have to think big picture, long term for many layers. And then also understanding the health system and becoming an expert in your parent's health history, because oftentimes the patient may or may not remember. And thank goodness for electronic records because but kind of know what that looks like so that you can be a voice to make sure your loved one gets the appropriate care. 

Tatiana Fincham: Oh, absolutely. Being able to take notes, feel free to to re-ask questions, touching base, knowing their medications, and keeping a list on hand. All those things can be really beneficial. I, I also think it's okay to just create space to have these hard conversations and lean on Social Work or therapists in the community to sort of process everyone's emotions. I also think it would be really beneficial if, you know, we take a moment and acknowledge that it takes a lot of courage to have these talks at any point, whether it's because something happened and now we have to step up and we have to navigate a new normal, or even beforehand if mom and dad are like, 'Hey, you know, I just want to make sure things are easy for my my family, my friends, everyone knows what I want so that there's no disagreement in case I can't advocate for myself.' I think just saying that that takes a lot of courage is is should be, should be recognized. 

Mary Dev: I think people take things for granted. But I think when people are in a, in a bad spot in such as like kind of navigating, going through a health care diagnosis, the patient, the family are often just doing what they need to do to get things done. But it's important to kind of understand that this is a hard thing and a very difficult thing for the family to go through. And so, as a bystander, if you can see some some of this going on, you know, offer support and say, you know, 'Hey, I'm here to do, I'm here to help if needed.' Or, you know, and kind of leave the door open. 

Tatiana Fincham: I completely agree. And also, I think as clinicians, it may be a good idea, at the medical team, we always check in with the patient as we should, but maybe also check in with the caregiver. How is things going? Are you managing? Do you feel isolated? Just little things along those lines so we can see if we can connect them with Social Work or support groups or just, you know, with other caregivers. So. 

Mary Dev: Yeah, oftentimes just even asking them, how are they doing, that means a lot to them. 

Tatiana Fincham: Exactly. They're not forgotten. 

Mary Dev: Yeah. I'm just curious, Tatiana, with your experience with the, in an outpatient experience, what would be three takeaways that we could give our patients and caregivers as they go through this process that can be so lengthy? 

Tatiana Fincham: Oh, that's a wonderful question. I think it would be okay to, especially if they're admitted, to slow down and really get to know what the new expectation is for the patient, especially mobility-wise or cognitively if needed. Then sort of checks, especially with the social worker in case manager, what's covered by health insurance, what isn't. And then start to build a plan to see about what needs are. Also, occupational and physical therapy can be very helpful when it comes to navigating medical equipment in the home. I also think taking stock of the support system. What does my support system look like? Is it realistic for me to say I can take care of mom and dad if I have a full time job and I have to take care of my kiddos too? Or do I need to lean on on my siblings, or my friends or neighbors or people of my parents' faith based organizations? So, really slowing down and making a plan before discharge. And then I think if it's an outpatient, especially in my work with geriatrics, I think it's okay to acknowledge again, like we've touched upon this, but maybe the loss of identity, that's that's a huge role. All of us love to be independent. We love to be in charge of ourselves and being able to just sort of sit with mom and dad and say, yeah, it is hard not to be able to do things the way you used to be able to do them and, and then maybe needing help that that can be, that can be a big change. So, what can we do to set it up where you're mostly independent and we're just making sure that safety is addressed so so we can keep you as independent as possible? Seeing it as an 'and,' not an 'or.' 

Mary Dev: Yeah, that's so true, especially in my experience. There was definitely role reversal. But fast forward two years, I think I can honestly say that they both appreciate just knowing that I'm there to help them no matter what. Good, bad and ugly. And so, you know, I'm there. And sometimes people just knowing that is, you know, makes them, you know, at peace. 

Tatiana Fincham: Oh, absolutely. We need each other from birth to, to, to the end of life. And it's such a gift to know that you have somebody in your corner and that you know, your child, you raised so well that they're able to step up and say, 'Don't worry, Mom and Dad, I got you.' 

Mary Dev: Yeah. 

Tatiana Fincham: We've talked about a lot of different ways to to support caregivers. But Mary, personally, what's one thing that really helped you and a takeaway that you would like to share with everyone? 

Mary Dev: So, as stressful as my experience has been because of my work experience as a social worker, I have always known it's important to carry out self-care regardless. And so, I really did practice that when I was going through this, because I knew that if I didn't take care of myself, I would be in no position to take care of my kids, my husband and my parents. And so, I really practiced what I preached at that time. 

Tatiana Fincham: Well, Mary, this has been wonderful. Thank you so much for opening up and sharing. I really appreciate you having this discussion with me today. For more information or to request an appointment with MD Anderson, call 1-877-632-6789 or visit MDAnderson.org. And thanks for listening to the Cancerwise Podcast from MD Anderson Cancer Center.