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Support Services for Caregivers
Mallori Thompson, LPC, MA, NCC
February 21, 2020

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Mallori Thompson is manager of the Duke Cancer Patient Support Program at the Duke Cancer Institute. Mallori received her master’s degree in mental health counseling from North Carolina Central University. Her area of expertise is the psychosocial care of patients diagnosed with cancer and their families. Her research involves learning about how cancer affects people who’ve been diagnosed, as well as their family members and their relationships. Mallori leads a multidisciplinary team of clinicians and researchers, including medical family therapists, oncology recreation therapists, child life specialists, and psychologists, as well as people who coordinate volunteer services and self-image programs.

Listen to the podcast to hear Mallori explain:

  • how the needs and concerns of cancer caregivers are different from those of people diagnosed with cancer
  • the services that caregivers seem to use the most
  • her top three suggestions for a caregiver who’s feeling overwhelmed or burned out

Running time: 15:48

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Show Full Transcript

Jamie DePolo: Hello, and welcome to the Breastcancer.org podcast. Our guest today is Mallori Thompson, manager of the Duke Cancer Patient Support Program at the Duke Cancer Institute. Mallori received her master's degree in mental health counseling from North Carolina Central University. Her area of expertise is the psychosocial care of patients diagnosed with cancer and their families. Her research involves learning about how cancer affects people who have been diagnosed as well as their family members and their relationships. Mallori leads a multidisciplinary team of clinicians and researchers, including medical family therapists, oncology recreation therapists, child life specialists, and psychologists, as well as people who coordinate volunteer services and self-image programs.

Mallori joins us today to talk about the services the program offers for caregivers, people who play a very important role in the cancer journey but can sometimes be overlooked. Mallori, welcome to the podcast.

Mallori Thompson: Thank you. It's such a pleasure to be here.

Jamie DePolo: So, to start, could you talk a little bit about the needs and concerns of cancer caregivers and how those needs and concerns might be different from people who have actually been diagnosed with cancer?

Mallori Thompson: Absolutely. Our program is one that focuses not only on just the patient but the family as a whole. So, when we think of caregivers, it's not just one person, but an entire support system that a patient might have around them. We think of cancer as an illness that is shared by a group of people instead of just one person. And so the needs can be different in the sense that caregivers aren't that direct experience of a patient and they aren't carrying that illness inside of their own body, but they are carrying it in a different way.

So some of those needs that we've seen — and everybody is very different — are that caregivers can sometimes feel like they want to do as much as possible to help the patient, and that can feel like a lot and feel overwhelming in a similar way that a patient can feel.

It could be taking on more activities that the patient was responsible for. We all have roles in our lives, in our families, that we partake in, and when someone gets ill, a lot of those things change. So the whole family system changes, so a lot of times caregivers shift, and what they used to do for the family might shift to something different. So it is getting used to how those things are changing, adjusting, and then the extra care that might be needed for that person with cancer and how they can be the most helpful.

A lot of times people are not faced with something as intense as a cancer diagnosis, so it's new territory. So we like to make sure that we support that whole unit. And it's hard to say that there's one specific thing that a caregiver would need or have. I think it just depends on the system of the family and that person's role.

Jamie DePolo: Your program, the Duke Patient Support Program — I want to make sure I understand this absolutely clearly — it offers support services at no cost to the caregivers, too. Is that right?

Mallori Thompson: Yes, that is correct. Our program started in 1987 from, actually, a family who had a daughter that went through a cancer experience, and they just a lot of missing elements in cancer care. So they attached to the Duke Cancer Institute and provided these services for not just the patient but the family as a whole, because again, the impact of cancer is beyond just the patient.

Jamie DePolo: And what type of services do you offer for caregivers? Is it kind of the same thing, like maybe counseling, I don't know, massage, exercise, those kinds of things? Or are they a little bit more targeted?

Mallori Thompson: Yes. So, we do have general counseling services. So we do see individual patients, we see family units, but we also see caregivers individually as well. So if a patient may not be interested in seeing one of our professional therapists, then the caregiver is always offered that. And again, that's at no cost.

We have child life specialists that work with the family. So the patient who has cancer is typically an adult, and we help their children understand what a cancer diagnosis is and how the family can continue to thrive through this experience together and how open communication can continue with that family.

And then we do have support groups where we have a simultaneous patient support group and caregiver support group, so folks can come together and then they can separate into the different rooms if they'd like to. Most of our other support groups are open to caregivers as well, so folks can come as a patient and a caregiver if, if that's something that they would be interested in.

Jamie DePolo: And are there certain services that caregivers seem to use the most?

Mallori Thompson: So, yeah. So, definitely, I would say our therapy services are the most used, as well as the child life if there's children in the home with the person who has cancer. Those are our two most utilized services related to caregivers.

Jamie DePolo: The reason your name came up, and the reason that I just wanted to do this podcast is, I was at an event and it was women who had been diagnosed with breast cancer who were talking about sexuality issues...

Mallori Thompson: Yes.

Jamie DePolo: ...and how they really wished their caregivers could go to a session to understand what they were going through. Because in most cases — I'm not going to say all, but in most cases, at least in this particular group of people — the caregivers or the partners were men, and they were having a really hard time understanding why a woman might not be interested, or if she was interested, maybe all the parts weren't working properly or there was pain. And so I'm wondering, is that something that comes up a lot in your experience or did that just happen to be this particular group?

Mallori Thompson: So, actually, that is a very common thing that comes up in our sessions as family therapists. We work with couples and do some marriage counseling as well, to the point where we actually created a women's sexual health clinic here at Duke where we see breast and GYN patients — least it started that way. And we incorporated a medical family therapist in that clinic to facilitate these joint sessions with a woman and her partner about their sexual health. And I actually was the family therapist that worked in that clinic for a long time and have done a lot of sexual health therapy with patients and their partners.

That is a really common thing that I have seen, and actually some of my favorite sessions were sitting with a partner of a patient and helping them to understand the commonalities that a lot of women face through treatments that relate to their sexual health and that there's pain, and there's dryness, and there's concerns related to just overall self-image that can impact a woman's sexual health as a whole, and that it's not atypical in any means. Which is kind of relieving, sometimes a lot, for the couple to understand, so there's not as much pressure on the patient or the partner to look at each other as the reason why they are not sexually active as much as they used to be.

Jamie DePolo: I have to believe, too, that sometimes this may be sort of a difficult subject to even bring up in counseling. Given your experience — and you said it was very common — is it becoming easier for people to talk about or does it really kind of depend on the group and maybe the counselor, as well as the people?

Mallori Thompson: Right. So, I've done some presentations about this exact topic because I'm a firm believer that the provider is responsible for bringing up this topic to a patient, and we have to be comfortable with it in order for our patients and their caregivers to feel comfortable to talk to us about it.

So, once I got educated and understood — because to me, I had no idea that this was something that breast cancer patients or GYN cancer patients experienced and even, in general, all cancers, because chemotherapy can really have an impact on sexual functioning — I started asking those questions to almost every patient that I saw. And it was very simply, “Tell me about your sexual health.” And some folks would, you know, spill the beans and others would look at me like, “I'm not really sure that I'm comfortable telling you about that.”

So I'd try to normalize that experience, and it really liberated a lot of people, and it was really great to witness.

Jamie DePolo: So could you estimate, roughly, how many people does your program help each year? I don't know if you can break it down by either people who have been diagnosed and caregivers or if it's just one whole big number?

Mallori Thompson: Yeah. So, we do track those numbers, and when we look at a unique medical record number, which would be one unique patient, we serve about 7,000. And attached to that [medical record number] is usually a family or a support system. So we like to say that we help about 7,000 families facing cancer every year.

Jamie DePolo: So, is your program or center typical? Do most other patient support programs offer these kinds of services for caregivers?

Mallori Thompson: So, I can say that we are unique in the sense that our services definitely focus on the family. I can't tell you 100% accurately that no one focuses as much as we do, but this is definitely a highlight of the Duke Cancer Institute and Supportive Care and Survivorship Center for us, is that we focus on that family component.

We've had a lot of other hospitals visit to see how we do that, and I think the most unique part about what we do is that we provide it at no cost. So, we have six professional therapists who we offset that cost through donations from many different forms and some hospital funding, to allow patients and caregivers and families to receive these services without that burden of the financial component, which really allows us to focus on what we're doing in the room versus what it's going to cost.

Jamie DePolo: So, I'm curious, too. If someone doesn't live near Duke and is a caregiver, feels like he or she needs some support, are there online resources that you're comfortable telling people to look for? Are there other options, maybe, where people can go to get some help?

Mallori Thompson: Yes. So, there's a lot of different online resources, as far as looking at American Cancer Society, and there's a lot of literature about caregiving. Whenever we have someone call in — because we do have this happen from time to time, to our program — we usually link them up with a therapist to at least talk about maybe what their concerns are briefly over the phone, and then we look wherever they are to help them find community resources that we think would be most appropriate. The person that we connect them with may not… We always look for a cancer center first to see if they provide services for caregivers, like support groups or different things, but if we can't find a local cancer center, then we'll look to the community of therapists and different support groups that maybe would be appropriate for them.

Jamie DePolo: Now, just in case there are maybe some folks out there who are caregivers, and my understanding is that feeling burned out, feeling tired, trying to be this superhuman for the person you're taking care of, is maybe one of the top issues. So maybe we can give these folks some practical take-home tips. Can you suggest anything for them, just maybe 2 or 3 things that they might try if they're feeling so overwhelmed?

Mallori Thompson: Yes. Absolutely. One of the things that I usually challenge any kind of caregiver that I'm seeing with, is asking them to rate their... as if they were a gas tank, right? — and how they feel, whether they feel empty or full, and what percentage they are. Are they a quarter tank, an eighth of a tank, half a tank? And pretty much every caregiver I ask this to is at least a quarter or less. And I think about how someone could operate at the most optimal level, so feeling the most power, the most full, like a battery charge would probably be a better metaphor. And I ask them if they think that the person that they're caring for deserves them to be at 80% or that 20% mark. And usually they say 80%, of course.

So then it's my ask to them to really think about what they need to recharge and how they can take the time for themselves to get back to as close to 80. Because we all know no caregiver is ever going to hit 100%. It's just not possible. So getting as close to as good as they can feel, but asking them to really think hard on what that would be for them individually.

So, some people, that is going out and taking a hike or getting a massage or getting sleep, simply sleeping 7 or 8 hours in a night instead of the 3 to 4 they've been getting. And everybody is different, because some caregivers will come to me and say, “Well, that's not possible. I can't leave my loved one and go on a hike for half a day.” So, then it's, “Okay, I understand that. What are little things? Can you light a candle in your house to make you feel warm? Can you paint your nails if you like to do that, or take a bath or maybe a little bit of a longer shower than you're used to?” So, I think every person has to look at themselves and say, “What makes me feel good, and how can I boost myself and get the rest I need so I can take the best care of the person I love that's going through this in the best way?”

Jamie DePolo: Mallori, thank you so much. I really, really appreciate your insights.

Mallori Thompson: Yes, absolutely. It's my pleasure.

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