Gabby Cinnamon (Host): Welcome back to Conversations on Cancer brought to you by the Riverside Cancer Institute. I'm your host, Gabby Cinnamon, and today I am so excited to be joined by Molly Turner, a Licensed Social Worker at the Riverside Cancer Institute, to talk about supporting yourself as a caregiver.

 Thank you so much for coming on the podcast today, Molly. I'm grateful to be spending time with you and talk about this very important topic.

Molly Turner, LSW: Thanks for having me.

Host: So before we get into today's episode, it's your first time with us. Can you tell us a little about yourself?

Molly Turner, LSW: Yeah, my name is Molly Turner. I've been a social worker for 34 years, all of them in the healthcare setting. I've been with Riverside Medical Center for over 28 years now and love what I do and doing it everyday.

Host: Wonderful. We're excited to kind of dive into this topic. Can you explain for those who don't know, what is a caregiver?

Molly Turner, LSW: A caregiver is a person or people that oftentimes help people with medical needs, personal needs. They can be partners. They can be family. They can be a friend, grandchildren, just whoever is available to help.

Host: So you kind of touched on this, but anyone can be a caregiver to someone with cancer. Is that correct?

Molly Turner, LSW: I Think one of the biggest misconceptions is people think they're not prepared to be a caregiver. They don't have any formal training. Well, guess what? Not many people do. So you kind of learn on the fly as you go. So, anybody who has available time to do things that a patient who's going through treatment can no longer necessarily do themselves. Maybe they can't run the vacuum cleaner. They might need help with meal preparation.

Maybe they're not up to driving to and from. It also is a misconception that if I'm a caregiver, I have to be there 24 hours a day, 7 days a week. Most of our patients are ambulatory, up and about. Do they need support and help with things that now that they're going through treatment, they may not be able to do as they used to do? Yes, but it's more of a stop by, let me see what you need today. Sometimes it can be phone check ins. It can be a whole arena of different types of things, but seldom do we see patients who are going through treatment need 24 hour care, seven days a week. And if they do, there's usually another underlying reason. Maybe they have forgetfulness, or dementia, or were weak prior to treatment, not ambulatory. Those pieces can definitely play into the caregiving.

Host: Right, no that's, yeah, that's kind of reassuring, because I think, like, a lot of times that comes to mind, like, oh, I'm going to have, like, all these medical things that I might not know about that I'm going to have to do, but kind of to your point, which we're probably going to talk more about later, you know, someone is needing, like, that level of care, the 24/7, that more than likely, unless, you were a nurse in another lifetime or, you know, have that medical experience, that's probably going to be something that you're not going to be able to do for that person, so it is, you know, a lot of the day to day stuff.

What are some challenges caregivers may face when helping someone who has cancer? Are there any, like, surprising challenges that people might not think about?

Molly Turner, LSW:  about?

I think one thing with the cancer diagnosis, oftentimes not only the patients, but families get very frustrated with the medical model. And the time it takes to actually get from diagnosis to treatment. So we encourage people that patience is a virtue. There are reasonings why we need another test, why we need lab work, why we might need a port placed in order to get the chemotherapy, getting things scheduled.

Sometimes, once we find out we have a cancer diagnosis, we want nothing more than to get rid of that cancer and we want to start right away. And sometimes it can be several weeks before the actual treatment is able to start and that can be from a number of different reasons. So, that patience is a virtue, then kind of flows over to the process of cancer treatment is also lengthy.

So those challenges and the challenge of how long is this going to be, how long are we going to be enduring all of these treatments and all of these doctor's appointments, and that's why the whole cancer team here is here to help through that. Hopefully our communication is clear and once you get that treatment set, you'll have a better idea.

Then the other challenge can be thrown in, what if that plan changes? You may come in one day and get your lab work drawn and your lab work's off and you can't have chemo that day or you're feeling so sick that they're like, you're not even strong enough to go through this again. So that also adds additional challenges as well.

And as far as caregiving, all of those challenges add up. Because caregivers not only are caregivers, but we have several different roles. You may be taking care of mom or dad, but you may have your own family, and you may have your own work, and then juggling those challenges and prioritizing is definitely a fine art sometimes.

Host: Yeah, I think that's a good point. You know, with any illness there are unknowns, but I think, with cancer especially, there's even more, you know, just like you said, things can change. Sometimes you don't know how long this treatment's gonna be. Is this treatment gonna work? You know, of course you guys follow all protocols and things, but sometimes things don't work out that way. So I think, I'm sure those unknowns at times can cause anxiety for the patient and turn their caregiver.

Molly Turner, LSW: Right.

Host: What advice do you give caregivers about knowing when to ask for help?

Molly Turner, LSW: I usually will meet patients' families, if not their first educational visit within the first two or three visits. The social workers like to reach out to them. We kind of just give a base of we are here. These are the types of things that we do. These are what we can help with. And sometimes just knowing that they have a resource to go to is important. But what I oftentimes tell them is don't wait

until your caregiving role has started to really cause you anger, frustration, bitterness. Please reach out because we do have resources that your loved one might qualify for and then unless you have been in this role you don't know what those are and then sometimes just being able to sit down and talk about it and bounce things off of a uninvolved party to hear suggestions, recommendations, those type of things.

I often tell patients and families to compromise is a huge event. You know, if mom was insistent on getting in the shower every day and washing her hair and somebody needs to be there with her every day to do that, is there a compromise? Can we back that down to every other day? This, you know, I need to still do these things, but I want to be here for you too.

So that, that give and take comes from both sides. And the other thing is the burden of caregiving. I oftentimes, patients oftentimes do not want to be a burden to their loved ones. And more so than not, what I've seen over the years, is the person who gets to be caregiver does not feel burdened. They feel honored to be able to be there to help out. So that's another big thing as they're going through, you know, Oh, I hate to ask. Go ahead and ask. And that goes from our end, too. Go ahead and ask the staff. Do you know if there's mom's meals out there? Do you know if there's a lifeline out there?

Do, you know, I don't like to leave her alone. What if she would fall and I wouldn't get back for four or five hours? We have some resources that we can help them to plug into place to help with that caregiver stress.

Host: Yeah, no, I think that's important because people, I think, are a lot of times kinder um, than you realize, and not only, yes, caregiving can take up a lot of time, especially if you do have your own family, but I think, in a sense, it gives the caregiver a sense of purpose, too. You know, especially if it is someone who is, you know, maybe retired or something, it gives them things to do, and they appreciate being able to help, I think, a lot more than the patient might even realize.

So we're going to take a quick commercial break to talk about primary care at Riverside. Riverside knows that health is your greatest asset and having a primary care provider you trust join you on your health journey is important to make sure that you are the healthiest version of yourself. If you do not have a primary care provider or are looking for a new one, good news, Riverside has a team of primary care providers accepting new patients. To see a complete list of Riverside primary care providers, visit riversidehealthcare.org/primarycare.

Now back to today's episode with Molly. So, kind of with like this goes a lot in line with our last question, but can you talk about what it means to set boundaries as a caregiver and why that's important?

Molly Turner, LSW: Boundaries are so important to help prevent burnout. If you feel like it's getting to be too much, then it's getting to be too much. So being able to set boundaries, not only with yourself, but with others is important. I will talk with people about making sure you feel comfortable doing what it is that's being asked of you, and if you don't understand, please ask for some clarification.

But then boundaries also need to be set with different roles depending on what you have going on in your life. If you are a mom, and you have teenage kids, and maybe you have the scenario where you've been a stay at home mom, and you've been able to do the laundry, and you've been able to do the meals.

You may have to set boundaries with your own family to say, okay, I'm not as available now because grandma's needing me. You're going to make sure you get, you have your own lunches packed. You're going to make sure you're doing laundry, you're, and usually the family will team up together. But knowing your limitations and knowing that it is okay to take time to yourself.

If you're not taking care of yourself, you're not going to be able to take care of another person for very long. So when we are preaching the cancer patients here, you have to eat, you have to take care of yourself, you have to get good sleep. That also goes for the caregivers, because if you're not eating well and you're not sleeping well, and this is an added stressor to everything, you need to make time. Sometimes people are like, I just need 15 minutes a day to go for a quick walk or to meditate or pray for a little bit. Those things need to be encouraged for self-care first.

Host: Yeah, think sometimes that can be hard for people because, nobody's super human and you can, you literally cannot do it all. And at the same time, it's like, I think sometimes people feel guilty, like, well, you know, I can't take care of this person, or I, you know, nobody could possibly take care of them as well as I could, so they feel guilty setting those boundaries because they think, you know, oh well, I must have failed. I, you know, if I can't do this, then something is wrong with me. And it's no, you know, you're juggling a full time job. You're juggling kids. You're dealing with all these other things too. So, asking for help, like you talked about earlier, setting boundaries of getting your family more involved when you're not there, I think is so important before you reach the point of the bitterness that you talked about.

Molly Turner, LSW: Well, and that's another, people don't think of it as a boundary, but if you kind of re-imagine it, if somebody is willing to come in to help out, if they don't do it your way, it's really okay. As long as the end result, it's done. If they don't go through the exact steps you do, it's really okay to step back and let somebody else do it their way, and oftentimes you might find, hey, that actually was easier than the way we've been doing it. So that's okay. One of the other recommendations I oftentimes have is when people offer help, they're genuinely offering help to keep a list, a grocery list going, and if somebody says, hey, you need anything?

My gosh, we're about out of milk and eggs. If you're going by a store, can you stop by and grab it? People are willing to do that. Keep a list of things that people can do. You know, if you know mom loves to have flowers planted on Mother's Day and, she can't do it. If somebody is like, you need anything, can you just plant this one flower pot for me?

Just keep a list of things that need to be done because when people are stopping by to say, is there anything I can do? If you have a list there, it's so much easier than saying, oh, I'll let you know, which is what we all do because we become, we don't want to impose on anybody else. Well, guess what? This is affecting a lot of people at same time.

And if they feel like they can help in any way, they're usually incredibly grateful to help. And you will be, in turn, grateful for their help and then more likely be willing to ask again.

Host: For those things that's the hard part. But once you do, I'm sure, you know there's some relief there. Why is it so important for caregivers to take care of themselves and get the support that you need. And kind of, you kind of touched on this already, but just to kind of But just to reiterate that.

Molly Turner, LSW: I think the support for the caregivers is so important because the focus tends to be on the individual with cancer and sometimes the caregiver is just, just keeping their head above water. And it's not shameful to know that I've got so much on my plate. You know, we tend run at a very high speed for a very long period of time and then it's like we fall off the face of the earth and that's not what we want to happen for the caregiver or the person needing the care because that person needing the care, remember, also feels bad that they need help.

They were independent doing these things before and they feel like they're a burden oftentimes. So if you're showing that you're able to take care of yourself, it usually resonates well with who you're caring for.

Host: What are some tips that you have for stress management for caregivers especially with cancer treatment, I can imagine there are a lot of ups and downs which can take a toll, like we say, not only on the patient, but on the caregiver as well. How do you kind of tell caregivers to manage that stress with all of that?

Molly Turner, LSW: I think first off, normalizing that the stress when you're a caregiver is very normal. Nobody just comes and does it without having some level of stress. Some people are smoother with it than others, but at some point there is going to be stress. The other thing I often tell people is, it does the mind good to always look at things as the glass is half full. It resets your mind, for every negative, and there are lots of negatives going through cancer treatment; try to focus on a positive, like, Oh, I, got to go and run dad to the, cancer center again. But I get to go run dad to the cancer center again. So sometimes if you refocus the mindset of that, things don't seem as bad. If we get into a cycle where, woe is me, and it's contagious, it's, within us it's contagious.

So if we are able to find a silver lining in all of the yuck that happens with cancer care, people tend to do much better. The other thing is speak up if you're not doing well. Please ask for help. We have counseling resources. We have support services. There is no shame in asking for help and that is exactly why those services are available.

So, take the good days for being really good days. Take the bad days as the sun will come up again tomorrow. We'll get past this. It is a, you know, rotten day or a rotten few days, but also to cherish the good days and the days you're having great conversation. You know, oftentimes in caregiving, it connects people differently than it did before there was the scary diagnosis of cancer.

And then, accept compliments. Somebody says, Gabby, you are doing so much for your mom. You're doing such a good job. We tend to go, oh, it's nothing. Oh, it, you know, but if we say, thank you. Thank you for acknowledging that. We are worthy of praise, even if it's things that we think we should normally have to do anyway, but to be able to gracefully accept a compliment without having to rationalize that it's not important because it's important.

Host: Yeah, I think, people are like, oh, the topic of whether it's right or wrong to, you know, be a caregiver, they think, oh, I have to do it. You know, not, not many people, that's not like their first thought, but probably when they're getting compliments like that, like, I kind of have to do it. And if you're already in a bad mindset, then you're

 like uh, well, this is just what I have to do, but, to your point, like, if you kind of turn that around of, you know, oh my, I get to do this and I get to spend all of this extra time with this person you never know how long people are be here. So, I think that just, flipping that switch makes all the difference, for sure.

Molly Turner, LSW: I agree.

Host: Where, so you talked about resources if you need extra help. Where can caregivers go in our community to get extra help if they need it? What resources are available to them?

Molly Turner, LSW: There's a great community of resources. It's just knowing whether or not you qualify for them. So, first resource I would tell patients that have somebody going through cancer treatment is to reach out to your social worker at the Cancer Treatment Center. We're very well versed at the resources. There's homemaker resources out there, but whether you qualify for the senior program or the DOORS program, which a lot of these are financially based, we can kind of guide you in the right direction to them.

We can make those referrals. We can let you know what's out there and what we believe you may or may not qualify for. Sometimes transportation is a nightmare. We can help patients try to navigate and figure that piece out. Sometimes we get really good answers and sometimes we get answers we don't like, but not asking and not knowing and just assuming you have to do this on your own; oftentimes, there may be a resource out there to help. We utilize the Cancer Support Center for support groups. We're familiar with some other support groups, so, Riverside has a caregiving support group for Alzheimer's patients. A lot of those issues remain the same with caregivers for like, elderly cancer patients might be something that we could link somebody to.

So, there's just a whole lot of things out there, but I would say the first step would be to reach out to the social worker to say, hey, what do we have available to us? What else can we get help with?

Host: Wonderful. Before we go today, Molly, is there anything else you'd like to add?

Molly Turner, LSW: I have been a caregiver for a cancer patient in the past, and that glass half full piece, I practiced that. And became very honored, as you had said, to get to spend that extra time with my loved one and to be able to take care of them. And sometimes we all just have a role within our families. Somebody might live ten states away, knowing that they may also be having a difficult time not being able to be the caregiver.

Feeling bad that the burden falls to one person. Utilizing them as a resource, how can they help? Maybe mom needs reminders to take her medications. Can sister Sally, a few states away, be the person that calls every night to say, go to your medication box, take your medications, you know, to utilize what helps are out there.

And I, you'll find families do pull together and figure out what's going to work best for them individually.

Host: Yeah. I think that's a great place to end off on. Thank you so much, Molly, for o the podcast today.

Molly Turner, LSW: You're welcome. Thanks for having me.

Host: And thank you, listeners, for tuning in to Conversations on Cancer, brought to you by the Riverside Cancer Institute. Make sure to rate and leave a review for our show on Apple, Spotify, or wherever you listen to the podcast.