Supporting the caregiver beyond cancer diagnosis

Reminding all caregivers they are not alone

Episode Transcript

Courtney Collen (Host): Hello, welcome to our podcast series ‘Beyond the Diagnosis’, focusing on embracing life after cancer, through Sanford Health survivorship programs. I’m your host, Courtney Collen with Sanford Health News. We’re so glad you’re here. Once a patient hears those words, “you have cancer”, that patient becomes a survivor. Through my conversations with health providers on topics related to survivorship, we’re learning more about how Sanford continues its commitment to help people live their best life beyond the diagnosis.

Today, I am talking with Rev. Sara Schwartz, Cancer Survivorship program coordinator in Bismarck, North Dakota. She is an ordained pastor. Sara, thank you so much for being here.

Sara Schwarz: Thank you so much for having me, Courtney.

Host: Talk about your role as a program coordinator and more about what you do in Bismarck.

Sara: This opportunity came up to be the survivorship program coordinator last August, I jumped into this position. It has been a delight and a privilege to be a part of this program. So as the survivorship program has evolved over the last eight months, or so, we’ve been adding programs to the supports that we’re offering to our survivors. One of the things that really attracted me to this program is the focus on whole person care. So it’s not, it’s not just the medical side of things, but it’s the emotional, the spiritual the social wellbeing of our patients. So we offer programs that that really pertained to that. And my job as a coordinator is to kind of pull all those pieces together and make sure we have equipped leaders in place to make it happen.

Host: Our topic today is all about supporting the caregiver and you have some personal experience having been a caregiver more than once. So talk about that experience and perhaps how that might have enabled you to support others through the work that you do.

Sara: I do have a couple of experiences to being a caregiver. The first experience I had as a caregiver, it’s kind of hard to think about me as a caregiver in that timeframe. But as I looked back, I was, so I was at a teenager, actually it, my dad had been diagnosed with a very aggressive brain tumor. My mom of course then became his primary caregiver. For almost two years, we kind of navigated that. I was the oldest of three children and I took on some caregiving responsibility for my younger siblings at the time, but also did some caregiving for my dad as his health was failing. I really watched my mom do a lot of that caregiving and the stress the stress that it was for her. And, and it gave me perspective that like, this is something we do for our loved ones because we love them but it’s also very hard. Then just this last fall, my husband was critically ill. It was sort of like just dipping your foot in the pool of caregiving. It was an acute illness. He’s mostly recovered and most of my caregiving for that is done. But it was it was really eye-opening to how stressful being a caregiver is.

Host: And probably has enabled you to really relate to caregivers that you work with and help support and encourage… is that right?

Sara: Definitely because I get, I get it. It’s one thing to be empathic and say, well, I, you know, I can attempt to understand, I kind of understand, I can visualize, you know, what you’re going through, but it’s a whole other thing to say, I’ve actually been there and I’ve survived it and you can too

Host: So happy to hear that your husband is doing well. Gosh, what a challenging time that must have been for your family.

I love what former first lady Rosalyn Carter once said and you reminded me of that.

“There are only four kinds of people in the world, those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”

Sara, let’s talk about why this concept of the caregiver is so important.

Sara: My experience, both in chaplaincy and in the church as a pastor, and then personally watching my mom, especially as the caregiver and then being the caregiver… the caregiver is vital. Like the caregiver helps the patient hear what the providers are saying. The caregiver advocates for the patient. The caregiver makes sure that the patient has what they need at home to live well or to be wherever the patient is living. The caregiver is there like advocating and hearing and, and caring for the patient just on that unconditional love. And sometimes it’s hard because sometimes the patients are our loved ones and don’t always appreciate it, or they don’t always see what we’re giving up to care for them. The caregiver, I think, is a vital part of the healthcare team.

Host: It’s somebody that patient knows and trusts. And that’s, that’s important too, right? You are that trusted source. You are that trusted go-to you define what a caregiver is.

Sara: Just off the cuff, a caregiver is someone who walks alongside the patient and advocates for them and takes care of them and helps them deliver.

Host: Is it common for caregivers to feel overwhelmed, exhausted at times? Are there are some moments that are tougher than others?

Sara: I think that’s one of the reasons why I got into chaplaincy and into caregiver support training and into the survivorship program. I really want to encourage people and caregivers that you’re not alone. There are other people going through things just like you, or very similar in that they can actually relate to what you’re going through. And yes, this is a challenging role. You will get through this and you’ll be stronger on the other side. I encourage people that you are doing a good job caregiving and advocating for your loved one. As a caregiver, it’s so easy to forget, to take care of ourselves. We get bogged down with all of the obligations and all of the things that we’re supposed to be doing. Often, caregivers also have work obligations. They’re just stretched thin and it’s easy to let our cup empty out. But it’s really important because you can’t give from an empty cup. It’s really important to do those things, to take care of yourself so that you can continue to take care of your loved one well.

Host: That encouragement must be so important. You’ve outlined some caregiver tools that have become invaluable to somebody who is caring for a loved one or a friend who has been diagnosed with cancer. Specifically. Let’s walk through some of those if we can.

Sara: Yeah. So the first one the first one was really an action plan. And this is like a way of setting goals. And so because it is so easy to become wrapped up in caring for our loved one that we really forget to take care of ourselves. So, an action plan is an intentional way to really make sure that we’re refilling our cup. It’s thinking about what is something that’s really important to me? What do I enjoy doing? What fills my cup? Then making the time an action plan to do that thing. People have told me gardening, they love gardening or walking or journaling, maybe it’s coloring or going out to a movie or for supper. Maybe it’s cooking or baking or doing some cardio or strength exercises, but it’s figuring out what is, what is it that brings you joy? What is it that will give you strength to meet tomorrow’s challenges that something that you can do today. It’s keeping in mind that self-care is not selfish. This is important so that you can continue to give good care to your loved one. Yeah. There are really four parts to a good action plan. That ‘what are you going to do?’ Gardening, walking, journaling, whatever.

  • What are you going to do?
  • How much are you going to do it?
  • When are you going to do it?
  • How often are you going to do it?

This week, I’ll read my favorite book for a half hour in the mid-afternoon when my spouse sleeps three times, Monday, Wednesday, and Friday. So it doesn’t have to be a lot. It can be something as simple as reading a book or coloring or going for a walk outside, but you’re naming what you’re going to do when you’re going to do it and how often you’re going to do it. And then you commit to doing it. And when you follow through with that, you can feel good because now you’ve met your goal, you’ve filled your cup so you have more to give. Another tool that people can kind of tuck in their tool belt would be recognizing what you can and cannot control, because anytime we’re dealing with other people anytime we’re dealing with illness, whether it’s acute or chronic, there are things that we can and things that we cannot control.

I once heard someone say that life is, you know, 80%, how we respond to outside actions and 20%, our own choices. So learning what we can control and managing our responses to those things outside of our control really becomes vital to our wellbeing, regardless of whether we can control a situation or not, we can control how we respond to it. We can’t control the demands our care receiver is making. So if there, you know, actually I heard this one the other day from a patient: she’s caring for her dad. She said he was grumpy about the way I was making coffee. He said, my husband makes it better. Okay. We can’t control how he responds to the coffee we’ve made, but we can control how we respond to him. Right. So it’s managing our own responses. So think about a couple of things that might be a stressor for you, and reflect on is this stress or something that you can ignore or let go? Is there anything you can change about this dresser? If yes, what can you change cannot be changed? Can you change your perception of it? If so, how? What would a more helpful perception be? I like to talk about flipping the script. So how could we flip the script so that this isn’t a stressor anymore. One of the things that it can be, that we can control another tool in our tool belt is gratitude. And I remember the first time I heard the phrase be grateful and have faith. My personal life was pretty mucky. But this motivational speaker duo convinced me to try giving gratitude to try.

I discovered that it’s pretty incredible how finding those little things that we’re grateful for – even when life feels overwhelming, even in the muck being grateful – can make just a very big difference. Since that first encounter with, I’ve come across actually a couple of different studies that prove that expressing gratitude, especially in writing, can really improve your overall psychological strength and wellbeing. It can improve your working memory. It can improve your sleep and your immune system function, and they can improve your relationships. It helps give you capacity to cope with difficulties of caregiving and other emotional challenges. Essentially, expressing gratitude helps us flip the scripts running through our mind from stressors to joys. Research has also shown that increased levels of expressing this gratitude every day, it can increase our levels of happiness and decrease our levels of depression.

When we write those things that we’re grateful for when we write down at least three of them every day. With gratitude, you want to be specific … Be specific and be intentional about in those things that you’re grateful for.

Then, the last tool that I’d want to talk through today would be relaxation or meditation deep breathing exercises and meditating, or really just quieting the mind and the body so that we can better hear what’s happening in our body. So we can better hear our body’s inner wisdom. It can help relieve some of the stress of caregiving. People who use these relaxation techniques often talk about feeling that the stress is leaving their body. These exercises can be done in as few as five minutes. I actually brought a quick one with and we can work through it. This breathing for relaxation technique today.

  • The first step is to close your eyes
  • And if that is impossible, quietly become aware of your breathing
  • Inhale to the count of seven slowly and deeply; exhale to the count of seven slowly and deeply
  • Exhaling is letting go.
  • Repeat this without forcing your breathing in any way. If your mind becomes distracted, refocus on your breathing. So inhale two, three, four, five, six, seven
  • Exhale, two, three, four, five, six, seven
  • Continue on doing this for one or two minutes or longer, if you’d like. Notice your body simply relaxing, letting go of the stressors as you continue with that deep breathing

Host: The power of meditation is incredible.

Sara: Breathing for relaxation is something that we, we actually teach our, our survivors are our cancer patients. And so now, now with our powerful tools for caregivers workshop, we’re actually teaching the caregivers, these techniques as well.

Host: Thank you. So let’s talk about caregiver support groups. When you talk about events for survivors or for caregivers, when we talk about supporting the caregiver, how might someone find a group or an event?

Sara: Through Sanford, you would want to just give our survivorship department a phone call to find out when our next workshop will be. ‘Powerful Tools for Caregivers’ is a workshop designed really to equip caregivers, to manage the stress, to take care of themselves to communicate effectively with their loved one and with the healthcare team and really to reduce their stress overall as a way of taking care of themselves. It builds some community in that it connects them with other caregivers who are going through similar things. So they’re realizing that all those things that we talked about at the beginning: they’re not alone, they are doing a good job and this doesn’t have to be overwhelming anymore.

Host: The feeling of connection and community is so powerful, knowing that you’re not alone as you care for somebody else, be it a friend or a loved one. What are some ways that caregivers can find community where they are? We had just talked about a couple of those workshops available and support groups for caregivers. But again, how important is it to foster relationships with others who are on a similar journey?

Sara: As I think back to some of the families I’ve worked with and my own experiences, it is important to hear from other caregivers that you’re not alone. There are other people going through similar situations and other people experiencing the same stressors that you’re experiencing and people who’ve made it to the other side of that caregiving experience and can breathe life into you. But as far as community goes, yes, it’s important to connect with other caregivers. And our workshop is a great way to do that. But really just building that community that, that will support you and walk with you through this, whether that be your faith community, whether that be the folks at the senior center, whether that be whatever club you might be a part of, or a book club that you’ve been going to for 20 years. Wherever that place is that you find community, those are the folks to really lean into as you’re going through your caregiver experience. Many times they’ll walk with you through that. If you’re finding that you’re not getting that support that you need from those groups that you’re already connected to, definitely reach out and we’ll help you get connected to that community that can walk with you.

Host: Wonderful. Is there anything else that you want our listeners to know about taking on this role or continuing as a caregiver?

Sara: That’s just it: you’re doing a good job. You two are worthy of care and respect and love, and it’s important for you in your busy week to carve out that time, to take care of yourself, you’re worth it. And it will help you be a better caregiver. You’re already doing a good job. This will help you do better.

Host: What a great way to, to wrap things up, Reverend Sarah Schwartz. I really appreciate your time and your insight into the cancer survivorship program up in Bismarck and, and all that you do. We really appreciate the support that you provide. Thank you so much.

Sara: Thank you. It’s an honor to be a part of this work.

Host: This was another episode of our series, Beyond the Diagnosis. I’m your host, Courtney Collen. Stay well, we’ll see you soon.

Learn more about about cancer survivorship programs and support at Sanford Health

Posted In Cancer, Cancer Treatments

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