Shubham Pant, MD: Taylor, you went through as a patient. What advice would you give maybe caregivers you know as a patient that you know this is the tools you can use to help your young adults cope with this better, if you had to give some advice to the caregivers for these young adults?
Taylor Bell Duck: Yeah, I think so understanding just exactly what the patient wants and needs and that stems back to communication. So for me personally, we had very open lines of communication. So no question was not okay. I mean you could ask anything and everything your wanted to, and we answered it as best as we could.
However, I know that there are some patients and families that don’t have that kind of open communication. So I think just having a general understanding of when you want to talk about it, where you want to talk about, what you will and will not talk about is really, really important. Because I often think times caregivers are like, “Okay should I ask? Should I not ask?” Like, “What do I do?” And so I think if you can kind lay out those boundaries, it’s helpful for everyone because this diagnosis can consume you if you let it. And oftentimes I, at times I felt like you know all I ever did was talk about lung cancer. And somebody said to me it was a really great piece of advice. They said, “You know, Taylor Bell will always be a lung cancer survivor, but she doesn’t have to let lung cancer define her life.” And it was a great piece of advice for me. It will always be a part of my life, but it doesn’t have to be my life.
Shubham Pant, MD: It doesn’t rule life.
Taylor Bell Duck: Right.
Shubham Pant, MD: So what do you think, Richard, what do you talk to about caregivers about helping out, helping young adults, or anybody with cancer deal with the diagnosis? What kind of support things; you talked about — mindfulness and everything – for the patient? What about for the caregiver?
Richard Dickens, MS, LCSW-R: Yeah, that’s another good question. What I’m finding over the years of being a social worker is caregivers often don’t share their own concerns with the patient. They’re really worried about the patient and in some cases they never do another case, as it’s literally years later after they know the patient’s fine. But they’re going through an awful lot themselves. They’re struggling to find people to connect to. Our caregiver groups sometimes are harder to populate simply because caregivers are so overwhelmed. They’re taking over the work of the patient oftentimes. They’re working double time at work to keep the financial income coming.
And young adults, it’s even more unique in that if they are in a relationship, they’re at the beginning of their career lives. They’re talking about children. They’re talking about moving into a house or an apartment. They’re talking about a lot of things that are forward thinking. And caregivers a lot of times don’t want to acknowledge their real, their full concerns. And the full concerns sometimes are, “What’s my life going to be like if my spouse can’t have kids? What’s my life going to be like if they’re chronically ill? What’s my life going to be like if they pass away?” And they don’t want to share that with patients. And so it’s more and more studies since in the last 22 years when I was diagnosed before that. And as a social worker there wasn’t a lot of research on caregivers and the stress. There’s been a lot more.
And the best story that I have was an older couple and he had lung cancer. And he was in one of my groups. His wife was in a caregiver group at CancerCare. And he had said that they had at the hospital, they had a breakdown for spouses and patients. And they went to it and then after they had the educational piece they separated the walls and they had the patients on one side and the caregivers on the other side. And he said, “I never knew how painful it was for the caregivers when they opened the walls.” And on the patient side there was laughter, there was a lot of things that were shared. On the caregiver side there were only tears and eyes that were just; their life was equally challenged and so uncertain in terms of their future.
Shubham Pant, MD: We need to communicate better, keep the open lines of communication, and we need to care for the caregiver.