Transcription:
Being a Caregiver to a Cancer Patient

Scott Intro: Welcome to Conversations On Cancer brought to you by the Riverside Cancer Institute, providing answers, debunking myths, and sharing patient stories.

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 Carolyn Domont, a Licensed Social Worker here at the Riverside Cancer Institute is chatting with us about being a caregiver to a cancer patient.

Thank you so much for coming on the podcast today, Carolyn. For our listeners that don't know you, because I think this is your first time on our podcast; can you tell us a little about yourself and your background?

Carolyn Domont, LCSW (Guest): So, I am a Licensed Clinical Social Worker. I've been working for Riverside for almost 20 years. I've been at the Cancer Treatment Center for about four years.

Host: What made you decide to be a Social Worker at the Cancer Institute?

Carolyn: So, when they were talking about having Social Workers at the Cancer Institute, I was all for it. I think, our cancer patients are, it's a population of illness that doesn't always get a lot of Social Work attention. Cause a lot of people don't understand what Social Workers can do. So, I was excited to bring Social Work to the interdisciplinary team, to provide, an extra layer of care for cancer patients.

Host: Yeah, that's definitely important and interesting that you say that, that, they might not think about that the cancer patients and their families, I'm sure, need that extra help and guidance through that time. So, so you have a lot of experience. So, I'm looking forward to getting into this topic with you today. Can you explain what a caregiver is?

Carolyn: Okay. So, a caregiver in a pretty broad explanation of, a caregiver, is a person who tends to the needs or the concerns of a person, with short or longterm limitations due to an injury, an illness or a disability.

Host: Who can be a caregiver to someone with cancer?

Carolyn: So anyone can be a caregiver, but if you want, the best definition would be anyone over the age of 18 years old who cares or provides assistance to another person. Caregivers can be either paid or unpaid. They can be family. They can be non-family.

Host: So, every cancer journey is different, but can you kind of talk about what to expect as a caregiver, as far as what a patient might need extra help with, or, some things that they might not think about if they might need help with?

Carolyn: You're, right Gabby, every cancer journey is different and every person's reaction to it and how they respond to it is going to be different. But there are some basic things that you can expect as a caregiver. So, one of the things, you can expect to maybe have to deal with home management. So, if the person is not able to manage cleaning the house, taking care of repairs on the house, things like that, the caregiver may need to step in and help with getting those services obtained at home.

Another thing a caregiver might expect that they weren't expecting before is to be a medical advocate. Being able to ask the hard questions, ask questions to the doctor, to the nurses, and feel comfortable asking those questions and advocating for their patient. Medication management, that one can often be a little scary. Cause some people have a lot of medications at home. So, that person needs, to be able to understand the medications being taken and how to give them and looking for side effects. Nutrition assistance, cancer patients, a lot of times don't feel like eating and drinking. And those two things are very important in recovering from chemotherapy treatments, radiation treatments, et cetera.

So, being knowledgeable about what nutrition they need and how to get that effectively to them. Some people need nutrition via tube feeding. So, there is extra education that needs to be given on that. Personal hygiene, not every caregiver is comfortable with giving personal care. So, later we'll talk about some limitations and boundaries, but being able to provide bathing, dressing, activities of daily living that, that person cannot do. And then transportation. Sometimes people don't feel like driving back and forth to cancer treatments. And so they need someone that's going to be able to pick them up and drop them off.

Host: Being a caregiver, it sounds like a huge responsibility. And like you said, it's depending on, the kind of condition that someone's in, they might need more help than someone else. But overall, no matter what, it's a big responsibility. And beyond the physical aspects also emotionally and helping the patient through this, especially if they've recently been diagnosed, through this new journey. Can you talk about how a caregiver can also support a patient emotionally through their cancer journey?

Carolyn: Yes. So, a big thing about supporting the patient emotionally is, one just offer encouragement, offer reassurance and compassion. Nobody understands what the cancer patient is going through, unless you've actually been there before. So, if you don't have personal experience with actually having cancer and going through the treatments, it's hard to put yourself in their shoes.

So, just being encouraging and reassuring, ask questions, ask open-ended questions where they're not able to just say yes or no. Because a lot of people may not know what they need, emotionally or physically. But if you can just ask these questions in a way that engages the conversation, you might be able to kind of figure out what they're needing at that time.

Listening, some people don't need an answer and they know that you can't fix it. So, if you're able to just listen to what they're saying and acknowledge what they're saying, that will help them be able to kind of talk through some things and you have to kind of not be afraid to listen to the hard things, because some cancer patients, when they're not feeling good, their mind goes to a place where it's not always sunshine and roses. Like they, they think about the hard things. They think about death and dying and they think about leaving their family and a lot of what ifs. So, if you can listen to the hard things, that will help them be able to process through that. Avoid judgment.

Don't say, well so-and-so did it this way. And I had an aunt who did it this way, because again, it's not their journey. So, try to avoid judging how they're handling their cancer diagnosis and their treatments. Skip the advice, cancer patients hear things from all avenues. A lot of people Google, a lot of people get on social network. They don't need advice. They just need someone to listen and then build them up, focus on their strengths and the amazing job that they're doing through all of this. Cancer treatment is one of the hardest things anyone will ever go through. And when times are hard and they're not feeling well, focus on the strengths and the things that they are able to do and kind of just encourage them to keep moving forward.

Host: Yeah. So, those little things here and there, like you said, the strengths focusing on that, a little compliment or, you know, something like that can go a long way I'm sure. You mentioned boundaries earlier and as a caregiver, I can't even imagine. Cause you're taking on, in some cases, a lot of responsibility. So, especially if it's someone very close to you. You probably feel inclined to help them in any way that you can, maybe you face something where you're like, oh, you know, I don't know if I'm comfortable doing that. How would you say the best way is to set those boundaries and how do you determine which boundaries to even set for yourself as a caregiver?

Carolyn: So, I think it's really important when you are looking at being a caregiver, is to look at what is realistic, and how can you prioritize how you spend your time and your energy? Because a lot of caregivers want to be all in, 100% from the get-go, and it's not often realistic because people work, people have other family members that they're trying to take care of. And then they just have themselves personally, that they need to take care of. It's very important to be realistic when you're going into a caregiver situation. Learn how to say no. It's not a negative thing and it's not bad. And it doesn't mean that you don't want to care for someone, but you need to be able to say no to some things, especially things that you're not comfortable with.

And getting some help for those things. Don't let your guilt get in the way. Guilt is very normal, when you're a caregiver, because you're always questioning, could I do it different? Could I do it better, is this the right decision for us? But you have to set that guilt aside and realistically look at, this is my situation and this is what I can do.

And don't lose yourself in the process of being a caregiver. It's very easy to become completely absorbed with the needs of the person who needs care. And then losing yourself in caregiving can create self doubt, low self-esteem, depression in the caregiver. Don't lose yourself in that process.

Continue to do things in your life that brings you joy, and then reach out to others for help. Even if it's just a friend that you talk to on the phone or have coffee with, or a minister, a pastor at a church. Just reach out and ask for help. There's nothing wrong with asking for help as a caregiver.

Host: Yeah. I think that sometimes, in general in life, it's like, if you're helping someone short-term or long-term you think, oh, you know, there's no one that I can reach out to, but I think sometimes we're surprised by other people's kindness, even if you, like you said, maybe it's not someone you talk to all the time, just you'd be surprised. People are willing to do little things here and there, which can make a huge difference too. So, I guess in life in general, if we're facing obstacles, I think that at least for me, I know if I'm in a routine that helps cause you know, like these are the absolutes of like, this is going to happen today.

The plans changed, but getting into a routine, I think helps a lot of people when they're going through things. Can you talk about how, to get in a routine, if you're a caregiver to someone with cancer and how that might help you a little bit, especially if you're going through something rough or the treatment is really hard or something like that?

Carolyn: Yeah, sure. It's always takes a lot of the unknown out of it, if you can have a somewhat tentative routine for the day. And it takes a little bit of experimenting to create a daily routine on what works for the patient and what works for the caregiver. I often recommend a calendar, especially if you have multiple family members coming in to help, getting a calendar out and having a family meeting and everyone write in what days they can provide help and what days they can take the person to and from an appointment. And then that alleviates last minute, scrambling finding someone to help. So, you really have to find what works best for you. If you are a person that lives in the same home, you probably already have kind of a routine, a morning routine, get up, get dressed, do breakfast, medications, et cetera.

If you're someone coming into the home, it's good to sit down with the patient and other caregivers and figure out what works best. Things are always going to come and be hiccups in the plan. But if you have a set basic plan, you can kind of ride out those hiccups a little bit easier.

Host: What are some of the challenges that a caregiver might face for both yourself and the patient that might be things that you wouldn't have expected that might happen?

Carolyn: So, the biggest thing I think for caregivers, dealing with cancer patients, is the constant changes in the plan. So you go in, you meet with your doctor, they outline here's our plan for chemotherapy, radiation, et cetera. And I think we just think that that's how it's supposed to go, but everyone could and can react differently to chemotherapy and radiation.

So, that's the hardest part. That's the challenge is trying to figure out how this plan is going to actually go and what it actually looks like. And, sometimes there's challenges of people end up in the hospital, and that changes their plan. So, the more flexible that you can be, it really helps take a lot of that pressure off. Challenges of being a caregiver also could be maybe there's not a lot more help out there for this caregiver who's already struggling. So, there are limitations on what can be provided sometimes. And so helping support that caregiver through that, would be somewhat the role of the Social Worker, at the cancer centers, talking them through this and processing through this, and working through those challenges.

Host: So, things don't always go as planned, like you said, and maybe something has changed and you're the caregiver and you realized, I might've bitten off more than I can chew, or this is going to be a lot more responsibility than I thought. Can you talk a little bit more about what outside resources there are to help you and other ways to like reach out for help when you need it?

Carolyn: Yes. So, that's the biggest component of this is being able to reach out and say, this is more than I thought it was going to be. And honestly, I hear that a lot of times, in working with cancer patients and their families is it gets really hard and it can get really hard, really fast, and people don't expect that and people decline quicker than we thought they might. Some people get better quicker than we thought they might. So, just being able to acknowledge that, okay, I can't manage this and knowing that that's okay. Not everyone is made to be a caregiver.

So, there's nothing right or wrong about that. Some people are just natural born caregivers and they can kind of tolerate a little bit more. So, I would say if you are a caregiver and you're sitting at home thinking, okay, I thought I could do this, and it's a little bit more than what I could handle, I would start with talking to the doctor. Talk to your oncologist, talk to your primary care physician. A lot of times in our clinic, if you tell the doctor, listen, I am overwhelmed. This is too much for me. They'll have the Social Worker get involved and just sit down and talk about what resources are there in the community that we can link them with.

What would insurance pay for that we haven't explored before? So, I would start with letting your doctor know, like I need some help and then reaching out to the Social Worker. If you don't have a Social Worker available in your clinic, you can always reach out to the hospital. They have Social Workers. Community agencies, for instance, in our area, we have, Catholic Charities, which is a great resource for 60 and older, Department of Rehab Services is available for under 60.

So, there are a lot of resources out there and, I would start with your doctor's office and ask them for a referral to a Social Worker.

Host: I think that sometimes people don't realize the resources that are available to them. So, that's really good for people to know, for sure. Especially in this area too. So, do you have any last tips for caregivers or any recommendations of things that they might not think about, if they're recently found out they're going to be going on this journey with a cancer patient?

Carolyn: I think it's just always important to remember who you are and why you're doing the caregiving. There's a lot of complex relationships out there and people are caregivers for different reasons, but if you're looking to be a caregiver of someone and you are just looking for their best interest and wanting to help them through this process, that's great. So, just remember that you are still a human being, you still have needs, you still have things that you have to get done and that's okay.

And you have to reach out if you feel like you're a little bit overwhelmed. I have a lot of caregivers who go see a personal counselor outside of any other services that they have at home. And it's just a time for them, for one-on-one to be able to talk about and process their feelings as far as being a caregiver. So I always recommend outpatient counseling is always a great resource.

Host: I think that's a great place to end off on. Thank you so much for coming on the podcast today, Carolyn, I think this will really help a lot of people with all this information. It was really great. So, thank you so much. And thank you listeners for tuning in to Conversations On Cancer, brought to you by the Riverside Cancer Institute. For more information, please visit riversidehealthcare.org/cancer.