Caregiving: Supporting loved ones and yourself

Breast cancer affects not only the person diagnosed but also the people who care about and share in their lives. Caregivers are often a key part of a diagnosed person’s support system. It’s also a demanding role that deserves attention.

Lynn Folkman, LBBC’s manager of community engagement, spoke to Gregory D. Garber, MSW, LCSW, director of oncology support services at the Sidney Kimmel Cancer Center at Thomas Jefferson University, about caregiving. Mr. Garber has worked with people diagnosed with breast cancer and their families and loved ones for over 20 years as an oncology social worker. They discuss what it means to be a caregiver and how to be most helpful in providing care and support for a loved one — including taking care of your own needs.

Gregory D. Garber MSW, LCSW

Director of oncology support services, Sidney Kimmel Cancer Center

Gregory D. Garber MSW, LCSW, is director of oncology support services at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. With more than 20 years of experience as an oncology social worker, Mr. Garber has worked extensively with people diagnosed with cancer as well as their families, helping them better the quality of their lives before, during, and following treatment. Read more. 

Lynn Folkman

Manager, community engagement, Living Beyond Breast Cancer

Lynn is the manager of community engagement, which means everything volunteer related.  She manages and implements the LBBC’s national volunteer initiatives including the Breast Cancer Helpline. Lynn has more than 25 years of professional experience in special events, meeting planning, operations, and marketing and communications in the nonprofit, corporate and government sectors. Read more.

 

Lynn Folkman

Welcome, everyone, to “Caregiving: Supporting someone you love and yourself during breast cancer.” My name is Lynn Folkman Auspitz and I am the manager of community engagement at Living Beyond Breast Cancer. I am happy today to introduce Greg Garber, who will be joining me for our discussion. Greg is director of oncology support services at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. With more than 20 years of experience as an oncology social worker, Greg has worked extensively with people diagnosed with cancer as well as their families, helping them better the quality of their lives before, during, and following treatment. You can read more about Greg on LBBC.ORG. Thanks so much, Greg, for joining us. Let's just jump right in.

Gregory D. Garber, MSW, LCSW

Great. Thank you.

Lynn Folkman

So, we may all have an idea about who a caregiver is, and I'm sure in your work you have seen a variety of caregivers. For me, personally, my sister was my caregiver when I was diagnosed with breast cancer, but before that, during, and thereafter, I was also a caregiver to my parents. Let's talk a little bit more about who is a caregiver.

Gregory D. Garber, MSW, LCSW

A caregiver can be any one of a number of people in one's life. There’s really no criteria other than somebody who is interested in helping one get through an experience. So, it could be a family member. It could be an adult child, it could be a coworker, it could be somebody within one’s faith community. Really, it's kind of broad and wide and really relates more to the desire to help somebody else navigate an experience.

Lynn Folkman

So, part of that experience may be of giving back, or helping someone that you love, no matter what that relationship may be. Are there certain characteristics that are really common to most caregivers?

Gregory D. Garber, MSW, LCSW

Yes. I think we all can pick out the people in our lives who are caregivers. They're the ones who are bringing meals when something goes wrong, or reaching out, remembering birthdays, dropping something off from the store, or asking if you need something. The people who are very attuned to the feelings of others and wanting to be helpful as it relates to that. I don't know what the exact definition of it would be, but I think it is a very, very broad group of people that can come from surprising places. It's not always a partner or spouse, or an adult child. It can be an old friend from school. It can be someone from work or somebody that you don't even know that well. And I think that, for caregivers, as you said earlier, I think that this becomes a very nice complementary or bi-directional relationship that works for the patient and for the caregiver. It creates a nice synergy and an opportunity to work together towards something.

Lynn Folkman

I think what's so interesting is saying people can surprise you. That people that you wouldn't necessarily think of as a caregiver are, and sometimes, I'm going to say the flip side, sometimes, maybe the people that you think would be, are not.

Gregory D. Garber, MSW, LCSW

Absolutely. I think, Lynn, that's a great point. I think the takeaway from that point is, look around and see who is stepping up. Those are the folks with whom you may want to connect as you're going through an experience like this. And while there will be others who are disappointing or didn't behave in a way that you thought that they might in this situation, there are often many others who do, and often it can be surprising to try and sort out who those two groups will be before you see it happen.

Lynn Folkman

I just read some recent research about caregivers that stated that 1 out of 5 spend a hundred plus hours per week caregiving and that 4 out of 10 reported declines in their health. How do you see it with the caregivers that you work with? How are they affected both physically and emotionally in the roles of caregiving?

Gregory D. Garber, MSW, LCSW

I think it's a great point. And it's a great question. Caregiving is an extraordinarily emotionally, physically, and time demanding process and unlike caregiving for somebody say in an acute post-surgical event — if somebody had their wisdom teeth out or an orthopedic surgery – caregiving with breast cancer often goes on over a long period of time. And not everybody is thinking at the beginning that I need to pace myself and I need to think about how I want to approach this, and I want to integrate self-care. It truly comes from a great place of just wanting to be available. Often by the time people start to break down a little bit it's hard to course-correct that. So certainly there are tremendous opportunities for a lot of gratification, but there are tremendous opportunities to really go outside of the realm of comfortable with putting your own needs aside.

The challenge, or the rub, is that a caregiver is going to be less and less useful to the patient for whom they are caregiving if they are exhausted and burned out and not feeling well themselves. So the idea of pacing oneself from the beginning becomes really important in that. We see this all the time, in all kinds of cancers where the trajectory of illness can be very, very long or treatment can be very, very long. And most people are not experienced with that. So they get in with fabulous intentions and can get in over their head and get exhausted very, very quickly.

Lynn Folkman

Yeah. And it's almost like sometimes you don't know how exhausted you are until you're really deep in it. Those signs that come up.

Gregory D. Garber, MSW, LCSW

Right. That you are developing distressing symptoms, that you're not sleeping at night, your family is getting angry with you, you’re not getting things done that need to get done. You're feeling overwhelmed. There are many, many signals that it's time to take a step back and take a look. Possibly it's good to share the caregiving role and not everybody's thinking about that at the beginning, but people can have multiple caregivers for multiple different things and disperse some of that responsibility. And some of that intensity can often be really helpful.

Lynn Folkman

That was actually going to be my next question in regards to those, what are the tensions and the stressors of caregiving that come up in relationships?

Gregory D. Garber, MSW, LCSW

First of all, caregiving for somebody going through cancer is not necessarily a natural role for somebody, so it requires a role change. If it is somebody who is close to you, it changes a relationship dynamic. This is your partner, but this is also the person who is now taking care of you. And as we know in adult relationships, there's a mutuality in there, and this can change that for a while and can be difficult and frustrating. Caregivers often can take on the distress of the patient and feel even more distressed than a patient does. Patients often have a tremendous amount of structure going through cancer therapy. There are appointments, there are treatments, there are things to do, there are medications to take. These structures that exist that help scaffold some of that anxiety.

For caregivers, not so much. We really don't create an awful lot of structure around that. People do what they feel is the right thing to do, which isn't necessarily a bad thing, but that can be absolutely exhausting without having much structure around that. Feeling out of control, feeling intense desires to fix things. Often caregivers are not oncologists and they're learning a whole new language along with the patient, and a whole new treatment system. And that is stressful as well.

Lynn Folkman

What are some of the more positive opportunities that come up when there's a caregiving relationship? We talked about some of the stressors, but what are the positive things maybe that happen?

 Gregory D. Garber, MSW, LCSW

Being a caregiver is a fabulous thing. I think one of the things that people around one who is diagnosed with cancer feels is powerlessness. Kind of wanting to help, but not knowing how, is feeling frightened, and caregiving is something to do. It is helpful. It is useful. It provides a need. That need can be physical. It can be rides, it can be emotional support. It could be taking notes of doctor's visits. It can be going to grocery stores, it can be cooking meals, it can be walking pets and stuff. There are lots and lots of things. Caregiving certainly meets a need for people, a good need for people, and it is wonderful when people have those qualities. It is certainly more of a positive thing than a negative thing. However, when the more challenging aspects of caregiving start to surface and people are a bit surprised by that, it can make it a little more difficult to figure things out. I think the more education that we can give to caregivers at the beginning of the process and kind of level set with expectations, I think the better that everybody does.

Lynn Folkman

So in your experience, are there certain strategies that you can share that make the caregiving effective for the patient? And, on the flip side, that make it effective for the caregiver?

Gregory D. Garber, MSW, LCSW

Yeah, of course. I think certainly there's some overarching themes, but it really also depends on an individual and their needs. Some patients have a tremendous need for information and like to be part of everything and have strengths in certain areas. And some would prefer to have other people do things and help them out and are more comfortable letting somebody take some of that control for them. I think one of the best early conversations to have is, how can I best help you during this, and here are some thoughts that I have. Because you want to put a little structure around it because the patient may not know. There are many, many ways to be helpful, as I mentioned in an earlier question. Going to doctor's visits, watching children, being a sounding post, calling other friends and disseminating information. Where do you see the needs as this evolves, and let's talk about that as this goes on and as they change.

When this becomes a one-sided relationship is when it gets into a little more challenging territory. Caregiving is a role, and being a patient is a role, and the more communication about the needs in that will portend for better outcomes and being in it for the long haul a little bit more easily. And empowering caregivers to say, “Hey, you know, here is what I am able to do, and here is when I am available and here is when I am not,” and making some rules for oneself in going into that role. And being kind to oneself and saying, listen, it's okay, I'm making a choice to be a caregiver, but within that choice, I'm making a choice to take care of myself, as well. Recognizing that if I don't do that, it's not going to be good for either one of us.

Lynn Folkman

Right. And it's hard sometimes to really bring that balance. It's so interesting because everyone brings who they are to the relationship, it reveals itself. And even just that simple question of “what works?” sometimes that's a difficult conversation to have. I know for instance, I'll share something about my sister. My sister's a former nurse. So she came from it from really a nursing perspective, and I came from it where it was like, “What's just right in front of me? What's the one thing I need to know, right now, to do?” I think just remembering that everyone comes to it differently with who they are.

Gregory D. Garber, MSW, LCSW

Most certainly. And that your sister is a nurse, I think about when we care for healthcare professionals who are diagnosed with a breast cancer. We often stop doing what we know how to do because we think they know, rather than having the conversation about how we can be helpful. I think it's just really critical because cancer is certainly a novel situation for many, many, many people, and not one to which we bring a vast amount of prior experience or knowledge. So no matter where somebody comes from it should certainly always be a conversation and there should be opportunities to course correct and say, “Hey, you know, this is what I need. I thought I needed this, but it seems like this feels helpful to me. This feels more of what I need now.” And I know we're having a conversation in the abstract of it right now. And in the real world things are a lot messier. But starting with some framework and starting with making efforts for conversations about this relationship is certainly a good place to be.

Lynn Folkman

And as you said, too, I think sometimes you go in and you don't know what you need or what you want. And then that changes, too, and just to continue the ongoing conversation. I know we talked about why self-care is so important to the caregiver, but what signs come up for the caregivers that they should really be aware of to say, “Oh, I really need to take better care of myself”?

Gregory D. Garber, MSW, LCSW

That's a little bit different for everybody. People's stress manifests differently. There are some people who stop sleeping as well, and some people who are feeling more anxious there, some people who are feeling an impulse to stay away, there's loss of interest in things that you typically had interest in. There are others around you telling you, asking you where you are. I think that this is very unique, feeling angry at yourself, at family members, at the patient, there could be guilt that you aren't helping enough, or that you're healthy and the person you're caring for is not at the time. I think there's this persistent challenge of feeling like it's doing what they can, but they're not relieving suffering, which is kind of a very lofty goal.

I often will ask people when I meet with them the first time, or the first couple, tell me what are the signs that you're having a hard time? What does that look like for you? Do you stop reading? Do you stop going out? Not that anybody goes out now, but what do we need to look for? Kind of bring that up and get that conscious so people can be aware and check in with themselves, or check in with somebody else about the emergence of these things.

Lynn Folkman

If someone is seeing signs, and they know their own signs, what should they be doing? And how do they go about getting support for themselves when it's really hard to pull away from the people that they're caring for?

Gregory D. Garber, MSW, LCSW

I think there's been a tremendous increase in large part due to LBBC in, in the role of caregiving and how to care for caregivers. There are tremendous resources out there and everybody finds support in different ways. Some people do yoga. Some people go to a support group, some people talk to a friend, some people speak to a therapist or a counselor, and some people go away. There are a variety of different things. The most important piece of that is giving one's self permission to do that, to be kind to myself and say, “Hey, you know, I'm feeling a little rough right now, and I need to figure out what I can do to sustain myself a little bit.”

And in that process is identifying others who can possibly help out during that time. I think some good strategies going as a caregiver is recognizing right from the get-go that caregiving is an imperfect process. Everyone makes mistakes, and just be good to yourself. Those of us who are parents have also learned that, sometimes you need to let the smaller things go for the greater good and for conserving some energy, finding some time for yourself, just quiet time where you're not answering your phone and looking at your email and being stimulated in so many ways. I think the thing that works for patients that also works for caregivers is maintaining structure. It may look different, but, structure is the great leveler of anxiety and, caregiving can really tear down structure very, very quickly, but even within a caregiving role, one can still have structure.

I think that's important to pay attention to, whether it's mealtimes or recreation, or things that we do. I also always like to tell people to think about the short, intermediate, and long-term goals. Like, what is it I can do for myself today, and what can I do for myself in the next couple of weeks, and what can I do for myself in the next month or 2 months, rather than creating a lofty goal that I'm going to pick up a mindfulness practice, and I'm going to go to a retreat, and I'm going to stop answering my phone between 6 and 10 at night. I think those lofty things tend to result in failure and when goals are more reasonable they tend to be more achievable. So, if I'm going to go to bed at 10 o'clock 3 days this week, it seems to be reasonable, right? I'm going to eat dinner at 7 o'clock, whatever that might be, or I'm going to watch this show with my partner, things like that.

Lynn Folkman

And as simple as maybe, I'm going to sit and have a cup of tea today, or whatever. Thank you so much for saying the feelings that are normal, having maybe guilt, and resentment, and anger at times, and, and it's OK to feel that way. Sometimes in a caregiving relationship, caregivers know best, or think they know best, but they get frustrated by the person's not doing what they think they should be doing or what's best for them. How do they balance that for someone that they love and care about so very much?

Gregory D. Garber, MSW, LCSW

I think that can begin with the conversation. It depends on the relationship. I'm a therapist, so I'm going to say it in a different way, but “I feel like I want to be helpful to you. And there are a few things that I see that potentially could make things better. Tell me how I can do this.” I think the more that people are talking to each other, the better that goes, and I think part of caregiving, inherent in caregiving is the ability to put one's needs aside, whatever those needs may be, the need to provide information, the need to take over, the need to take care of. Figuring out where you might need to contain yourself a little bit and say, “OK, you know, this is something that I do not have control over right now.This is a choice that the patient is making. I may not agree with it, but getting into it with this person, if it's not something that's going to cause peril, may not be worth it right now.”

You know, there are good times and bad times to talk about stuff that's a little more charged. A bad time is when things are charged, a bad time is in the middle of a crisis. A bad time is when you're feeling an urgency to talk about something. A good time is when things are quiet and there is some calm, and when it is not in the middle of an infusion center, or to doctor's visit. Often timing of conversations and things like this can make a huge amount of difference. People are accommodating a tremendous amount of anxiety, both patients and caregivers, and providers. I think it bears mentioning that we're living in the midst of a pandemic right now. I always have to remind myself that in addition to the anxiety of illness and caregiving, we have this background amount of anxiety that walks with us every single day. And while many of us have adjusted kind of well to that, it isn't going away right now. So having some recognition for the components of what your frustration might be at the moment.

Lynn Folkman

It’s just such wise advice because it's universal and maybe it’s not just for caregiving, which is great for caregiving, but it's such wise information to remember right now.

 Gregory D. Garber, MSW, LCSW

Yes, we all need to be kind to ourselves. These are extraordinarily difficult times and people are truly doing the best that they can. And so the goal is to get to the other side of this as intact as we possibly can be. And towards that end, there are a lot of different ways to do it, and you need to find out what works for each one of us.

Lynn Folkman

So we've covered a lot and we've talked about really some great information. Thank you so much, Greg. So as we close, if you maybe had one of your biggest takeaways for caregivers or advice, what would you tell them?

Gregory D. Garber, MSW, LCSW

It may sound a little trite, but I really think reminding yourself that caregiving is an imperfect process. It is something that you will make mistakes about and something that you will have feelings about. And the feelings may seem untoward, like getting angry at somebody, or feeling guilty, or feeling like you want to abandon somebody. And it's all OK. We are human beings in this really difficult process and have volunteered to help somebody get through a tremendous challenge in their life and be gentle on yourself, and allow some of this stuff to roll over you. It is not a commentary on you. The commentary on you is that you are a caregiver and that you are giving of yourself in this. And it's OK to be messy. And it's OK to say you're frustrated, it’s OK to take a time out and engage in self-care.

Lynn Folkman

I don't think that's trite at all. I think it's really important for people to remember. Sometimes when you're going through a stressful period, it might be hard to just remember those things that you just need to keep reminding yourself of. So, thank you. Thank you for watching today and thank you to Greg Garber for sharing his expertise.