The Importance of Caregivers: The Unsung Heroes of Cancer Care

Deb Krier 0:01

Hey, there lifters uppers. I'm Deb Krier, the co-host of cancer and comedy, where our mission is to heal cancer impacted people through hope and humor, something we like to call turning the grim into a grin. So today on cancer and comedy, we're going to be talking about the often hidden heroes who are impacted by cancer, these are our caregivers, and how important it is to care for the caregiver. So here is the host of cancer and comedy Dr Brad Miller.

Dr. Brad Miller 0:32

Hey, Deb, what an honor, a privilege it is to be with you and all our cancer and comedy lifter uppers. These are the great folks who have chosen to connect with us, who have said that no matter what my situation in life can be impacted by cancer, either having cancer myself or being part of a family unit or or some part of the cancer journey, I'm not giving up. I'm getting I'm, I'm, I'm going to be with this process to then I'm going to live, live, live, live, live my life to the fullest. So that's what we like to call this kind of turning the grim of cancer, turning the grim into a grin. And that grin just indicates a full and fulfilled life. And we're all about that. And when part of that process, we're developing a community of people, a community of people who have a similar mindset. And so if you'd like to be a part of a community of people who have a positive approach to difficult matters, then join us just we call it coping with hope and humor. And you can get connected to our community by just following our podcast at cancer and comedy.com/follow Hey, Deb, how about a couple of I mean, really, really bad dad jokes. Are you ready for him?

Deb Krier 1:49

I am ready. Wait, I'm hanging on.

Dr. Brad Miller 1:52

Oh, good you. You better just hang on to your seat there. How does a train eat? It goes choo choo. It goes choo choo choo, wow. Well, you had that one. What kind of trees have fingers?

Deb Krier 2:07

I don't know, pal palm

Dr. Brad Miller 2:09

trees, palm trees.

Deb Krier 2:10

Oh, of course.

Dr. Brad Miller 2:11

There you go.

Deb Krier 2:15

Well, oh my gosh, you know we, we love our dad jokes, um, and you know, as you know, if you are a listener to the program, we're going to have one more after our conversation. We're also going to have our very important faith It or Break It segment. We would love for you to be part of our cancer and comedy community, where together we crush cancer with a message of coping with hope and humor. As Dr Brad said, please follow cancer and comedy at cancer and comedy.com/follow Well, today we're going to be talking about caring for the people who care for us. Those are our caregivers. Brad, in your ministry experience, you've seen the role of caregivers take many of our lifters and tell us about what you have experienced.

Dr. Brad Miller 3:05

Well indeed, I spent 43 years as a pastor of local churches, and they've ranged in various sizes from a few dozen to several 100. And so in the course of time, I spent a lot of time in hospitals and in people's homes dealing with profound illnesses, and cancer, including other life threatening illnesses, and I just consider that a real privilege. But I also got to not only visit and be with the people who you know had cancer, had the illness, but also around their families and other people who are caregivers. And I saw the dynamic that happens there, and it really ranges from people who are really engaged, you know, really they're every day, really just emotionally engaged, often a spouse or a daughter or son of an aging parent, something like this, who are really emotionally engaged. And sometimes it's a paid caregiver, you know that they're someone out of state is just paying to have someone come in and come in and give the care. And it's often great care and and many times there is emotional involvement there as well, but it certainly is different than a family involvement. But you know, the dynamics of the emotions of it do range in terms of how it's all set up, meaning that if there's some sense of obligation or guilt that is somehow I have left, I have to do this to care for my aging or my person in my life who has cancer. If there is some sort of guilt or obligation or is very burdensome, it can be a problem that way, or somewhat, just feels like, somehow this is crap, my style and my life is now, then I'm kind of, you know, in chains. I've heard some people say I feel like I'm locked in here with this person, you know, I'm in this person that's not good, that's can be destructive, and sometimes there can be some tension between. So different from the children of a person who has had cancer or something like that, maybe one's out of state or one's nearby, there can be some tension nearby, and that type of thing. But my point of this is I've seen the different scenarios, but I saw one where it was both challenging and difficult, but also kind of encouraging. Basically, an aging couple, both of them were ravaged with disease, one with cancer and one with other ailments, heart disease and so on. And they were mutually caring for one another. And their adult daughter, who lived by, cared for them as well. And basically, although she didn't live with them, was basically there all the time in their home, caring for them. They cared for each other. And eventually the daughter had some health problems, and she had to kind of step aside a little bit, and the aging parents cared for one of the other people. But when one spouse died, the gentleman died, and just not more than 48 hours later the spouse died. And so there was something kind of poignant about that, that they couldn't live without each other, in a sense, but they were together. And then, but also after that, the daughter who was there with them, she had a bit of a recovery from her health issues as well, because even though she was loving and kind and caring, a burden had been relieved from her. And so there were some different things. What I wanted to share with you here is that there's different dynamics that happen, and that sometimes the person who gets kind of left out or sometimes hidden in this whole process is the caregiver. Would you give me your take on this? How do you feel that the caregiver comes into play here?

Deb Krier 6:40

You know that they are our superheroes. We could not do this without them. And you just touched on so many points. I think there's, you know, many situations where someone ends up being a caregiver when it was not something that they wanted to do. Sometimes they're having to take care of, you know, maybe a parent or a sibling that they didn't have a good relationship with, yeah, and so there's, there's a lot of tension, things like that that are in there. It was certainly not anything that anybody signed up for, yes, you know, if it's a spouse, we did say, you know, sickness and in health, right? But we never really thought that that was, you know, something that was going to happen until much later. You know, never depend. You know, it's even if somebody's been married 50 years, you're always thinking, Oh, that's later. That's later. I think one of the biggest things is that there's not a lot of resources out there for caregivers, and they are dealing with so much because they also have their own lives that they're they're trying to deal with. Maybe they're still working, you know, all of those things. As I said, you know, they had not planned on this. They might not have any training to be able to do it. And I think one of the things that is frequently seen is, you know, kind of what you were were mentioning with the daughter, the caregiver, gets sick from a variety of reasons, but you know, because they are, in many instances, burning that candle at both ends, you know, and and I think, you know, we need to recognize that. And if you know somebody who is a caregiver, see if you can give them a break, let them talk to you about it. I mean, you know all sorts of things, but it's just, it's very challenging for them, and we often are always only thinking about the person who is ill, and we forget what all the caregivers are going through.

Dr. Brad Miller 8:30

I think it's important that we have a distinction here between cancer care providers and cancer caregivers. Provider medical

Deb Krier 8:42

is a different situation

Dr. Brad Miller 8:44

And a provider, it's either your medical staff, your doctors, your nurses, but it can also be home health care people or other situations like it. What we do know is that cancer is a disruption. You know, one of the people we listened to a video where somebody described it as kind of like, you know, throwing a large rock into a pond, it causes a big ripple in your life, and it impacts a lot of people, a lot of people, and it's a disruption. Everything has to kind of, with the family dynamic and other things like that has to adjust and come to a new arrangement, a new, negotiated understanding of things where the person had cancer may be, you know, functioning the breadwinner, and any number of other things in the life of the family, and all of a sudden they're not, and you have to, have to adjust. So I know that let's talk about self care of the caregiver. So many times people have trouble in this area. What do you think are some ways that the caregiver can initiate self care for themselves?

Deb Krier 9:53

Well, you know, I think it's because they need to recognize when they need a break, whether they just need an hour. To take a nap. They need to do whatever. And, then they need to reach out to people, or even just tell the person who they're caring for, you know, what? I need a nap. I need to go lay down. I need to go for a walk, you know. And, and obviously it depends on what the situation is, but they need to recognize that they are important too. And I always tell people, it's kind of like that. The thing when we get on the airplane, right? You know, when you're told when the oxygen mask drops down, put it on yourself first, before you try to help somebody else. And you know, and I think it's very important that our caregivers need to remember they have to take care of themselves, because if they get sick, if they get exhausted, whatever it is, cranky, right?

It happens. It happens.

Yeah, you know, if that happens, then they're not going to be able to provide the care that that might be needed. And so they absolutely have to take care of themselves first and not feel guilty about it. I think that's one of the, the really important things is, you know, because we as the patient, sometimes we might go, Oh, you're not gonna do whatever. Okay, first of all, we shouldn't be doing that, folks, right?

Oh, that's, that's, that's laying the guilt trip on somebody. We can, we can do that. Yeah,

yeah, you know, and, and, but for the caregivers, when somebody's laying that guilt trip on you gently tell them. No, no, no, no, I need to take care of myself before I can take care of you.

I think we're talking about boundaries here, really, in the sense of and also trying to understand what is kind of the proper level of care for what we are capable of giving. Let me kind of unpack that a little bit. You know, there with cancer and other things like this, there are certain physical aspects of care that can go pretty intense. I'm talking about, you know, changing dressings. I'm talking about sponge bass and pretty, pretty gross. I want to do gross stuff, you know, that can be gross stuff, and, you know, cleaning ports and all kinds of stuff that can happen that some people aren't constituted to do very well, but they might be constituted to kind of help out with, let's just say, the bookkeeping or taking care of the, you know, the household bills or what have You, or other aspects of life, there may be some division of duties there. And I think this has to do with our comfort zone of the caregiver, and try to have the understanding among those of us as cancer patients, right of what is appropriate to ask as well. And so I think circumstances matter here, don't they?

They do. They do, you know, and sometimes it really comes down to saying, No, my mother and I had had several conversations where, you know, when I got very sick, she came out and stayed for four and a half months. And, you know, several times people would say, Oh my gosh. That is so fabulous that you were able to do that. And her response to them was always well, I expect Deb to come take care of me when it's needed. Oh, boy. And she did do that with her parents, even though they hadn't asked. And that's the other thing. Sometimes we're a caregiver when we shouldn't be. But you know, I knew that I would not be a good caregiver for my mother. You know, we were just the oil and water, all of those various things and, you know, and and so it we, we had started to kind of have those difficult decisions of, you know, Mom, I'm not dropping everything and moving out here. Now, obviously it's one thing if it's an emergency, but long term type of situations, no, you know. And if that meant we had to hire someone you know and or do whatever, it was, just that was going to be the way we were going to have to do it. And she actually passed away very suddenly. So we didn't have to try and put that plan into action. But sometimes we must have to say no. You know it's not going to happen that way. And is there guilt? Yes, I still feel bad that I had those thoughts about my mother, and I probably always will, but I also knew that telling her no was the best for both of us.

Have you ever met Deb who was just a bitter person after going through some relationship struggles? Maybe it was cancer, or might have been something else, divorce, or something else like that, who comes up really bitter about it? And I think that if we're not careful, we can really kind of wallow in the land of bitterness, given that you know our if we are the care caregiver, that somehow our lives have been hijacked by this circumstance, if we allow that to be the case, other people see this again. You know, they weren't planning on that. That's right, that's right. And my point is, I think we have to make a choice of whether to become bitter and just kind of say I can't do anything about this, or to try to get better. And what I just want to share with you, because I've got to know you and I, we kind of walk through this situation with your mom a few times in our conversations where you know you and your mom, did you know weren't Eye to Eye growing up and things like, things like that, and so the dynamic of near end of her life was you had to make some decisions there. But it seems to me that the boundaries that you're able to put on this, even though it sounds like she's laid on the guilt trip on you a little bit, was, was moms do that? Yo, yeah, but you, you were able to have some hard conversations, and that can be part of the point of setting proper boundaries so that you can leave your relationship in a better place, instead of speed, stuck in bitterness. And if I understand our relationship, meaning you and I, a little bit it seemed like you left your relationship with your mom basically, in a pretty good place. Is that a fair thing to say?

It is very fair. We actually left it in a really good place. You know, on, on, you know, two days before she passed away, she and I had the absolute funniest, best telephone conversation we had had in probably years. You know, it was just one of those where we just had a really good chat. And two days later, she passed away very suddenly. So not only was I not there when she passed, now she was not alone and, and you wanna and, and she had my aunt there. And so that was, that was very important. Because I, you know, I always feel bad when somebody passes away and they're alone, but she had my aunt there. My aunt was taking care of her, but my last remembrance of her is that funny conversation, you know, and so that was, that'll just be something that I will always treasure. And I'll tell you, you know, we did have, you know, a contentious relationship. One of the best things for me, for kind of the healing process, was hearing everybody else talk so glowingly about her, you know, and and so even though she and I weren't on, you know, the the best terms, sometimes she did have a heart of gold, and hearing how other people really just thought so much of her really, was very special.

Well, I think that's awesome, because what you're what you're going to hear, is what, I think is kind of the heart of what we try to do here in cancer and comedy, it's not just flippantly laugh off bad things. It's about how to seek the joy, see the joy, and seek the joy, and to help that to happen, to trying to grim it to a grand means that we try to transform bad things into something to be celebrated and to celebrate these relationships and so often, caregivers in a cancer situation are people who are thrust into A situation. Hey, families are messy, right? They always are. And so your thrust situation where you are suddenly spending maybe a lot more time with the loved one than you had planned on spending, or in more intense situations, or maybe making, literally, life and death decisions and profound decision making. And there's financial implications, insurance dealing with, you know, medical craziness, all kinds of stuff that goes on and that you get in the middle of that, and then you still, if you choose to, you can be telling good stories and have good things come out of that that makes you have been in a good place. And I just think we can encourage people, maybe help people to navigate that. That's part of what we're trying to do here. So when you get together with somebody in your family, if you're in this position as a caregiver, you are a hero. You are tremendous for doing that, even if you're just kind of going in, if you're the if you're the son that goes in and does the taxes once a year for the lawn. You know, whatever your hero, you know the you see, you see what I'm saying. So they're hidden and not appreciated, and they need to be resourced more. And there are a few resources out there, but I think there can certainly be more that can come into play here. And what do you think are the needs there that maybe, that people like you and I, or other professional resources can help provide for people who are caregivers?

Yeah, I think maybe a sounding board, you know, let them know you can talk to us, you know. And, and, because I think many times they feel totally overwhelmed, and you know, and guilt and all those various things, you know, because this isn't what they had planned to be doing, you know. And so even if we're just saying, hey, you know, we're here if you need to talk to somebody and you know, and checking in with them, I think that's one of the other things, is if we know. Know that. You know, if we know that we have someone in our life who is going through this, don't just ask the patient, how are you doing? Reach out to the caregiver and say, How are you doing? What you know, is there something I can be doing to help you, right? You know, and, and because that, I think, is, you know they, they might feel guilty like they, they, you know, they shouldn't be asking for help. No, they should be asking for help also. And maybe they just like I said, they need somebody to give them a break. They need somebody to take them for what they might need somebody to come have a glass of wine with them. There you go, or do it virtually. But yeah, just kind of remember that they need our compassion and our care and our empathy also.

Well, I think this goes to be where you have, kind of, in a sense, concentric circles of caregiving for the cancer patient. I'll just use myself as an example, where I had cancer and I was kind of laid up for a couple weeks, and so my wife was my primary caregiver, but my adult children came and dropped in and were helpful from time to time. And other family members were helpful. You know, I wasn't debilitated for weeks and weeks and weeks. I was very lucky in that, but a couple, you know, it was a pretty serious matter for a couple weeks and other people were just called to say hi and be helpful. So the people in the periphery that I felt, periphery of this, who I felt could be helpful if called upon. And I think maybe those of us who are on the periphery various support groups, if you're in a if you're at a book club or a church group or a bowling league or whatever it is, you know, you know, somebody's got cancer, and there's somebody out there, just check in, say hi, and maybe there's something that you can do. I know we've been fortunate in all the great people we've talked to here on the cancer and comedy podcast. We've had people who've mentioned how people came into our lives and were helpful to them. I remember we had the one story, the lady whose husband died of cancer, and that somebody came and she had the oil in her car. You know, that's just what she needed at the time. And so we had a story recently about a situation where there was somebody who's considering committing suicide, and they went to their employer and said, they're your employment. Place of employment has a counseling service. Let's get this person into counseling, and it probably saved their life, right? Have the antenna up, be aware, so you could be helpful, right? I think a couple other ways you want to be helpful too. If we just help people to learn to process stuff, maybe write stuff down in a journal, something like this. I certainly believe in things like meditation and prayer, talking with people, counseling may be an option for you. Maybe there's support groups for the American Cancer Society or other groups in your community, but be proactive, is what I'm trying to say, because it can sneak up on you. I've seen it happen where health issues have snuck up on the caregiver, and sometimes that can really throw a big wrench into plants where the caregiver gets sick.

Oh yeah, well, sometimes it's a role reversal. Yes, you know, they might have been the person receiving care, and now all of a sudden they're the one having to give care, kind of like the couple that you were talking about at the start. But you know, then, then that throws a totally different dynamic in there.

Yeah, well, I think there's some, yes, the dynamics are changing here and moving on. And I think there's, fortunately, there's more and more attention paid to this, even in the medical community. I believe that, pardon me, that cancer is a team effort. Is a team effort. It's not just the doctor with the surgery or the, you know, the treatment, the chemotherapy or whatever. That is not just the nurse or even the professional, you know, in CNA, person, or whatever it is, who helps out, but it's a team approach to healing. And I think there's more and more acknowledgement of that. And let's also believe, Deb, that if we choose to, you know, if we choose to have an attitude, I'm going to live my life to the fullest to the very end, then we can just enjoy these relationships, you know, right? And just, but that's kind of on us, the cancer patient as well, to kind of help that to happen if we're in pain or if we're dealing with things, to still choose to get value out of that relationship,

right, right? Yeah. And along those lines, you know, we mentioned the fact that some of our caregivers are paid people, right? You know, there are medical people. There are, you know, in-home caregivers. They might be the person coming and mowing our lawn, whatever it is, yeah, just because they're paid does not mean we shouldn't show them gratitude, of course. And, you know, and, and I think that's one of the really important things is sometimes it's like, yeah, yeah. They're my doctor, they're my nurse. I don't even need to say thank you. Not enough people tell them thank you. So let's, let's all remember to be very grateful for those people, because they are just as important as you know anyone else that we are dealing with on this journey.

Yeah. So I think that's so important, because I remember, I actually have a meeting with my cancer doctor coming up in a couple weeks here at my six month checkup. And I remember the last well, six months ago, I guess when I met with him, I made a point of saying, I just want to thank you for saving my life because he did, because he did, and he kind of almost was, probably take it back just a little bit, you know, about how that kind of thing, and, you know, maybe we say, if that's our adult daughter helping take care of us, who has, you know, two, you know, a priest, two middle aged, middle school aged kids at home she's gotta deal with and run over to take care of you and help to say thank you, you know, or maybe you, you you know, give her a gift card for a restaurant or whatever and say, go take your kids out for, you know, lunch or something like that, or whatever we can do to show appreciation. I just think that's important.

I don't assume that they're going to take care of us. I think that's kind of like my mother was doing right, right, you know, and, and so, you know, let's, let's just be very conscious of things like that.

And I'll say one more thing that I think is important that we touch on here, that, you know, oftentimes our spouses become the prime of or significant others become a real you know the point person in caregiving, right? And let's respect that they have a life too. You know that they have a life too and that they are thrown into this in such a way that they have a life and we can honor them by giving them some space as well, right, right? Well, you're awesome, Deb, and you, you have a great story to tell about this. And I want to say, I want to say, thank you for being a little bit vulnerable about sharing your own relationship with your mother. And I think that's important to share for our lifter uppers, that they can know that, hey, we all go through stuff, and we can get through it, and hopefully we can be in a place to, indeed, transform lives a little bit, to help to help people cope with hope and healing and turn that grim into a grin, and hope that we can be part of the process.

Perfect. I love it. I love it. Well, you know, we always like to lighten things up. Always, always, right? This is cancer and comedy. So it is time for another one of Dr Brad's Bad Jokes of the day.