Transcription:
Taking Care of Yourself as a Caregiver

Gabby Cinnamon: Welcome back to Conversations on Cancer, brought to you by the Riverside Cancer Institute. I'm your host, Gabby Cinnamon, and today I am joined by Danica Stull a licensed clinical social worker at the Riverside Cancer Institute to talk about how to take care of yourself as a caregiver. Thanks so much for coming on the podcast today, Danica.

Danica Stull: Thank you for having me. I'm excited to, talk for a minute.

Gabby Cinnamon: Of course. Before we get into today's episode can you tell us a little bit about yourself and your background?

Danica Stull: Sure. I have been doing social work for more than 10 years at this point. I've worked with all ages really from about two to about. Over a hundred and I have found that through some personal experiences, I am a caregiver for my medically complex son that I really am interested in the medical field as well. So I recently started working at the cancer center because it felt like a great combination of my two passions, which is social work and then also, the medical field and helping make the medical system or the medical experience as comfortable for the patient as I can.

Gabby Cinnamon: I'm really looking forward to this because you bring a really interesting perspective for sure. So I guess my first question is, can you kind of explain to everyone what a caregiver is?

Danica Stull: A caregiver is really just any person that provides care for someone else. usually it's because the person is unable to care for themselves because of an illness, an injury, a disability, something like that, that has led to them needing that additional help. There are paid caregivers. We're all familiar with nurses and CNAs, things like that. What we're gonna kind of talk about, or what I'm focusing on today is gonna be more of the family caregiver, the unpaid caregiver, which tends to be, family member, parent, spouse, or adult child. Those are really common people.

Gabby Cinnamon: You kind of touched on this, so can anyone be a caregiver as far as family members go, or friends or how does that work?

Danica Stull: Literally anybody can be it has to be someone who's willing to put in the effort and put forth all of the, significant amount of work that it can take. But for the most part, it tends to be spouses parents of, disabled, or ill children, or like I said, Children of disabled or ill parents. I do know of some situations where family, friends have stepped in or grandparents, nieces and nephews, things like that. So really anybody who's willing to undertake this, caregiving is able to do so.

Gabby Cinnamon: In your time as a social worker have you heard any common misconceptions about being a caregiver? Or I guess, what are some things that you hear maybe from these family members and friends about when they're first taking this experience on?

Danica Stull: I think that when it comes to being a caregiver, a really common misconception that I hear from a lot of people, both as a social worker professionally and as a caregiver personally, is that people will say like, wow, I, you are so strong, I could never do what you do. They make it seem as though the caregiver is super human or in some other way, special or extra strong. And what I think is important to remember is that, It's actually not true. Obviously caregivers are strong people who, can put away their own needs for someone else's. Takes a lot of strength, but it's not something that they were before they became a caregiver.

It's something that they are, because they are a caregiver. They are literally just like you. Before they were a caregiver, they probably also thought, wow, I could never do that. And then the situation came and they stepped up to the challenge. They knew it would take a lot from them and they did it anyway. But yeah, if we could remember that they're just like you and me. Well, we all would struggle with this big challenge or this extra responsibility, and these are just people who have stepped up and done. So, yeah.

Gabby Cinnamon: I almost feel like when caregivers are, like you said, I mean, what they do is incredible and it is a huge responsibility and it's not discounting any of that. But, kind of when those things are said, it almost puts like, unnecessary pressure on them, to be this perfect person when in reality, everyone's situation is different. You said it, they're just like us, but they've taken on this huge responsibility.

Danica Stull: Well, pressure. And also, like you said, a little bit minimizing and I know it's not the intention when people say that, but if you think I'm doing a good job as a caregiver because I have some special skill or some superhuman power, then it discounts all of the effort and the sleepless nights and all of the, just significant amount of, pressure on the caregiver's shoulders that again, they deserve credit for because they really are just a normal person who took on this, huge new challenge.

Gabby Cinnamon: Right. Continuing on the challenges aspect, are there any challenges or obstacles that come with being a caregiver that someone might not expect, when they first decide that they're going to be a caregiver to someone with an illness or cancer?

Danica Stull: One of the challenges that I think of is just like responsibility, going into it that you are going to be responsible for this big process that, It's a lot, but I think once you start, there's just a big difference between what you know and what you expect, and then you know how it actually feels when it's 3:00 AM and the person you're caring for is having some kind of a medical crisis and it's on you to figure out, do I take them to the emergency room? Is this something we manage with an at home, med or, treatment? Do I, who do I call? When do I call?

That's just, it's such a big responsibility. And I was kind of thinking about, when a new parent has a baby and they send them home from the hospital, they, sometimes people will, make a joke. They're gonna let me leave with this baby. Like I don't, they think I know what I'm doing. it's really like that, but it's more intense because it's not just caring for a person. Most of the time these people have additional needs and difficulties that are probably foreign to you. And then another common challenge, and this is one that I think we all could learn to help.

This is something if we can listen to, we can help those people in our lives who are caregivers, but is that we like to give advice. People like to step in and say, oh, well, let me give you this advice, or let me, offer this suggestion. When in reality The caregiver's job really is to face reality, see what options are available for the person they're caring for, and to meet with that person that they're caring for, and the professionals, the doctors, the nurses, etcetera, and figure out the best course of action. So sometimes that isn't what we hope for or what we planned for.

So an example I was thinking about. In the cancer center, we'll regularly come across situations where treatment has stopped working or there's not any further treatment options. So the doctor and the family member and the caregiver will discuss the options and they'll come to a decision that they're going to pursue hospice. And so then sometimes there are people on the outside who are not super familiar with the situation, who will offer unintentionally harmful advice. Like, oh, keep fighting, don't give up.

And so in situations like that, what that does is it can cause the family member, the caregiver or the patient to feel uncertain, to feel like they've failed. So like my advice to people is if you know somebody who is a caregiver or going through something difficult like this, only offer support. So support without advice, unless they ask you for advice or unless you. An actual expert on their situation.

Gabby Cinnamon: Yeah, I think, kind of like you said, people don't mean it to come out that way or they, I think that sometimes people don't understand the ramifications of what they are saying. But yeah, I think too, kind of taking a step back and, unless you are that primary caregiver, you are in that person's direct family everyone's doing their best and you might not know the full situation.

Danica Stull: Absolutely. Again, as a personal caregiver of a disabled child, my take on this generally speaking is I try to take the intention behind the words and let the words just kind of go, because usually the advice is not helpful. We have all of these different people that are well studied and know the ins and outs, offering direction. So the advice isn't helpful, but I do try to like, like you said, understand it's coming from a good place and so I'll accept the feeling and not the words. .

Gabby Cinnamon: There you go. Yeah. Sometimes you probably just have to, you know, it reaches a point, I'm sure. What advice do you give caregivers about knowing when to ask for help?

Danica Stull: So this is something that applies to caregivers, but really all people, I think when you have something big that comes across your plate prior to that, maybe you are able to do all of the things without any extra effort. You were just like knocking it out of the park. You were doing great with your family, doing great at work, and then something big comes along like becoming a caregiver and suddenly you can't do it all. Suddenly you're struggling, things are falling apart. you're failing at things or you feel like you are.

And so I always remind people that as humans, we only have so much energy available to us. We have a finite amount of emotional energy, physical energy, etcetera. So we kind of have this romanticized vision or this thought process that we are like stretching ourselves or pushing ourselves, pulling more out of nothing. But really that's not how it works. What ends up happening is when you do that, you're actually pulling that energy from somewhere else. So if you are handed something big and different, and new, and that's going to require a lot of energy.

You have to recognize that that finite pool of energy you have as a human is going to get depleted faster, or it's going to be, if you apply it towards the caregiving, you're not going to be able to apply it in as many other ways as you were before. And so, I think it's really important for caregivers to go into it knowing that that will happen. It's not, you're not failing if you need to cancel other things or not able to do all of the stuff you did before. That is an expected part of the process. So when those things happen, you're on track.

When you start to struggle or you start realizing that you can't do all the things you did before. That's okay. So you're doing a good job. That is not a sign of failure. It's a sign that you are in a new situation and that you're having to find, a new way to apply the available energy that you have. and so then as far as that, knowing that you can't do it all, I just think it's important to recognize that it's okay to need help. One of the most practical things is just like rest, try to rest.

If you have a break between med applications or taking someone to their radiation appointments or whatever, if you have a minute, take a minute, breathe. It's okay to not use every minute to, again, if we think we have to accomplish all that we accomplished before, then we have to use all those minutes. But when we recognize that we have taken on this new big Responsibility, then we can allow ourselves to use some of those minutes to rest. We can allow ourselves to accept help. We can allow ourselves to apply for services, benefits, things like, disability, Medicaid. We can start to do those things to, Take advantage of what is available to us.

Gabby Cinnamon: Can you talk about the role that setting boundaries plays in being a caregiver and how to set boundaries If you feel like, maybe you are reaching a point of burnout, so to say, if you are spreading yourself too thin, can you kind of talk about that?

Danica Stull: Yeah. so boundaries is something. I would say lots of people struggle with. When it comes to being a caregiver, it's a lot of people will like almost refuse to talk about setting boundaries because they feel like, well, like, let's say I'm caregiving for my parent, they cared for me when I was a baby. They stayed up all night. They did all these things and that's true. But boundaries are still a necessary thing and. Another thing is boundaries are kind of an concept. People don't always know, like, sure, I'll set boundaries, but they don't know what does that actually mean.

So what I tell people all the time in therapy, in, at the cancer center in my own personal life and my own, stuff, is that it all starts with prioritizing. So, sit down. Write out what it is that you have on your plate. See it like actually name the things that you're responsible for, so that you are not trying to, again, you're not trying to jam, 15 hours worth of work into 12 hours. You need to see what you actually have responsibility to complete. Then you prioritize it. So, for example, caring for myself might be at the top of the list because I have to like stay healthy and sane to be able to care for anyone else.

And then the next thing on the list might be, giving my dad his medication. I wanna break it down as much as possible, so giving dad his medication is gonna be on the top of the list, several steps down it might be take Dad for a walk. So those are both things on my list, but they're obviously not at the same level. But the more you break it down, if I would've just put care for Dad that's not gonna break it down as well. So the more you break it down, the better. And then you apply yourself to this list. And again, it doesn't have to be written.

I do think it's good to. Initially kind of write out what your responsibilities are so you can see and appreciate the list that's in front of you. But yeah, then you just apply yourself to this priority list. And when you are out of energy, when you've come to the end and you have nothing left, or time is out or whatever, then. You know that you can't complete that thing, that time around that is a boundary. I've recognized that I have X amount of time, I have done the things that are on my priority list in the order of the priorities. And so, yes, person who asked me to do this other thing, I would love to help you, but unfortunately I can't this time.

By prioritizing, it helps you recognize what things you actually need to apply your energy to, and then it helps you when you come to the end of that energy, you have done the things that had to be done. And I do wanna say I am aware that the way I am describing that is very simplistic and makes it sound like it's, a simple process. But it can be really difficult if the things on the bottom of your priority list that didn't get done are important to you. It can feel really upsetting. And so, again, I'll give a personal example.

When my youngest son was born and was in the hospital for almost eight months, and my other kids were at home and he was in Chicago, and so obviously parenting my kids was on the top of my priority list, but I could not be with all three of them at the same time. So I had to split my time between home and Chicago, and every time I was prioritizing my youngest, My other kids were at home with someone else, not with me. And then when I was with them, he was in Chicago without me. And each time I felt so sad about the fact that I couldn't do all of the things that I wanted to do or that I felt like I needed to do.

All of those things were important, but in that moment, I had to again, prioritize. Today is my youngest son's day. Tomorrow is my older kids' day. I had to do it that way. I had to use my strength in the best way possible. Guilt, feeling guilty, feeling like, ah, man, I need to do it all. That doesn't use my strength. Well, that just kind of zaps you of any energy and leaves you unable to make decisions. But yeah, so prioritizing your needs and the things you have in front of you, using your energy to complete those things. Trying not to feel guilty, trying to set down that guilt. When you get to the end of your energy and there are things left, and recognizing that you have done the best you can with what you have available.

Gabby Cinnamon: Yeah, I think, because kind of all ties together when you were talking earlier about, caregivers aren't super human. They don't have this, extra strength that the rest of us don't. And I think, just from talking to people and, They do feel guilty about setting boundaries because they're like, oh, well you know, why can't I handle all of this at once? I should be able to do this? And it's like, no, like you have other things that you need to do too. And you kinda have to sit back and say, I might not be able to give the best care that I can to this person who really needs it. I might need to delegate some of these other things.

Danica Stull: So what I always tell people is, Your feelings and the truth are not always going to be the same. I may feel something and it may not be an accurate assessment of the situation. whatever I'm going through, it's almost like I think of it like a pair of glasses, like a lens. So if I had no sleep last night and or I got bad news this morning or whatever, then whatever I'm looking at. After the bad news, whatever I'm looking at, I'm looking at through that grumpy or upset lens. And so I'm gonna see it colored that direction or that way. And so that's our feelings.

What we feel is kind of how we're perceiving the world around us. So while somebody else would look at me and say, wow, look at that. going back and forth and being there for her kids and look how great her kids are doing. If I let myself, I could just sit there and wallow in that guilty lens and see everything in my life through, that pair of guilt glasses, which then keeps me from doing anything else. I did wanna add though. As you said, delegate. Absolutely. And I mentioned earlier getting applying for services.

There are options out there for getting someone to come help or having somebody kind of relieve you for a bit. My son had a nurse in the home for a bit, still only a few hours a week and you still have to carry a lot. But then another thought is, If there are things, if you've done the priority list and you're going down the list and there are non-negotiable things like maybe medications or, other safety related issues that you can't get to, that is the time to talk to the doctor and say, maybe we need a higher level of care.

So just keep in mind, your job is not to fill the space like to cover all the needs, your job is to apply what you have available to the need. And if it covers it and everything's good, awesome. If it turns out that additional help is needed, bring that in. And then also, like I said, keep that doctor in the loop in case home care sometimes that isn't the most appropriate situation.

Gabby Cinnamon: Why is it so important for caregivers to take care of themselves?

Danica Stull: It's really just so cliche almost to say this, but they always say you can't pour from an empty cup. So obviously if I'm, not sleeping well, if I'm, really stressed out, so I'm feeling sick and down, whatever, if I've got all of these things going on and I'm not taking care of myself, then the care I provide for my family member is going to be, affected by that. So if you are caring for someone, You have them at the top of the list and you don't have yourself at the top of the list, it will 100% always lead to a situation where you burn out or where you physically become unable to care for them.

And it'd be better for you to say, I'm gonna go take a nap and leave them with another family member for a bit, even if you feel like you're the best for them. It's better to do that and keep yourself healthy than to not take care of yourself and end up unable to care for them.

Gabby Cinnamon: What are some tips that you have for caregivers on managing stress? I'm sure you know everything you've talked about. It can be a lot especially with cancer, there are different seasons, maybe, treatment is tough right now. It might get better later. But still, it all adds up. I can imagine. how do you help caregivers, manage that?

I think

Danica Stull: what it really comes down to is recognizing, again, those boundaries, all that stuff we've talked about. If you are prioritizing your time and you are setting boundaries, when you get to the end of your available, energy, then you aren't going to be as stressed. Part of stress or a big part of stress is when we are trying to control things that are not ours to control. So we're trying to control a treatment outcome, for example. We can't, we can provide a ride to the doctor. We can encourage treatment compliance. We can do all of the right things and still have no control over what the final outcome is.

So reminding ourselves that we are not in control is one way to help limit stress. And then, like I said, not taking on more than what we can actually. But once you are in it and you have all these boundaries set and you've done all the right things, it's still good to, I always recommend therapy. And I know everybody who is a caregiver is gonna say like, how do I have time to add one more thing to my schedule? I hear you. But it comes down to, again, getting yourself healthy and able to help this other person. If you are not healthy, you're not helping them.

So it's a really great, way to help you. A lot of the stuff we talked about could be talked about in therapy. They could help you identify those boundaries and things like that. Another obviously good things, just coping skills, like taking deep breaths. There's something called progressive muscle relaxation, yoga, all of these things you can Google and see really, really detailed processes on how to use them, how to apply them. Really, there's just lots of relaxation options if you were to look online and, search that. And I have found just sometimes relaxing music. But yeah, all of that stuff's gonna help.

And then one really big one is just finding people who understand, and again, I know that might be easier said than done, but there are online communities, there are people sometimes you can ask at your doctor's office. There are a lot of different ways, but when you can connect with someone who knows what you're doing and knows what you're going through, where you don't have to, give a 10 minute explanation, you can just jump right into how you're feeling. Because they get it, that really is big for stress relief because a lot of times we feel alone and that helps us to feel heard and understood.

Gabby Cinnamon: Yeah, I think, sometimes people they see like, exercise or yoga or therapy, they're like, oh, that's 30 minutes. I could be doing something else. But I think even in life in general, the 30 minutes that you spend in therapy will have such a much bigger payoff than the 30, you know, you're not losing those 30 minutes. It'll help you so much I'm sure.

Danica Stull: I agree so much, and I am a therapist. I have been for years, and when my son was born and was in the hospital, I rolled my eyes at how am I gonna fit more, time for therapy in here. But then I went to therapy and it was life changing. It was what helped me wrap my mind around what actual decisions, concrete actions I could take to be the best parent for, my child in the hospital and my children at home and all of the other roles I carry as well. Wife and, I was an employee. There was a lot of stuff I was responsible for. And yes, I was like, no, I can't do this. And then I. It was hugely helpful. Yeah.

Gabby Cinnamon: Where can caregivers go to get extra help? I know you mentioned starting with your oncologist or your doctor. Are there any other steps that people can take?

Danica Stull: So at our cancer center, we have two social workers. Myself and another, and we are there, there should be some one of us there every single day. So we are there to offer support, any kind of support that we can. We help with practical things like, transportation or if people have questions about treatment plans and things, we can guide them to the right people who can, answer the questions. All the way up to, being a shoulder to lean on someone they. Open up to without any kind of, worried about, they're not gonna stress us out or overwhelm us because we are a neutral third party.

Not every doctor's office is gonna have a social worker, but they will have, they should have someone who can either guide you in the right direction, because I'll say this too, even as a clinic social worker, I regularly will make referrals to, external therapy options or things for people. So, Reaching out to your doctor's office is really going to be probably the best bet because you are not going to be the only person that asks that question. They're probably gonna have a already created list of resources that they can offer you.

So don't try to fix it all on your own. Reach out and say, Hey, is there a social worker? Is there a case manager or somebody who can, help me figure out what services I need, because you can't be an expert on something that you have not done before. You don't know it because you haven't done it, but these people have. It's not new and scary to them. it's routine and every day for them. So get that help from the office when you can. And then of course, just like I already said this, but finding people who are going through similar things is also a really big resource.

Because a lot of times they will have, personal recommendations for different ways to get help or different people who can offer support because they've been there and done that. and so they're not just guessing. They can tell you what worked for them.

Gabby Cinnamon: Before we go today, is there anything else that you would like to add?

Danica Stull: Like I said at the beginning, well, I've kind of said it on and off throughout the whole thing, is if you are a caregiver, give yourself grace. Recognize you cannot do all of it. You can only do what you actually have the energy and the time for. Try not to wallow in guilt or let that, build up on you. Remind yourself that you are trying your best, doing your best with a really hard situation. And that almost any decision that you make is going to have a little bit of a, an icky feeling because it's an icky process.

Cancer doesn't feel good, so no, none of the decisions you make about cancer or other illnesses are going to feel good. so just reminding yourself again that your feeling. Are not an indication of how well you're doing. respect yourself, respect the person that you're providing care for, and remind yourself that you're doing your best.

Gabby Cinnamon: Thank you so much for joining us today, Danica. this was a great episode and I think it'll really help a lot of people. And thank you listeners for tuning into Conversations on Cancer brought to you by the Riverside Cancer Institute. Make sure to subscribe and leave a review on Apple, Spotify, or wherever you listen to our show.