The Role of a Caregiver

Transcript:

Shubham Pant, MD: Nancy, tell me, as a mother and now you’re a caregiver for Taylor, what was the transition like? Tell us a little bit about this new normal that you had in your life.

Nancy Bell: Again, Taylor is very independent.

Shubham Pant, MD: Is that from the beginning?

Nancy Bell: Um-hmm. She’s always been very independent. So it was a huge change for her, and I think it scared her. I was kind of worried that she wouldn’t let us help or wouldn’t want the help.

Shubham Pant, MD: Like push you away a little bit and try to be more independent.

Nancy Bell: But she really needed it. It’s no secret that lung surgery is no walk in the park, and she needed a lot of support doing basic things like getting to the bathroom. Originally right after surgery, the chest tube and all the materials that have to go with you to walk, we had to get her up to walk in the halls. She had never experienced pain at that level. She had never had a child. She had never had any surgery.

Shubham Pant, MD: But she was 21.

Nancy Bell: I think she probably thought she was close to death. And so walking up and down the hall carrying the IV pole, carrying the pump, and working through the pain, it was heartbreaking, it really was. But we were all there as cheerleaders. We have a large family, and so we would rotate in, and somebody that doesn’t have a large family, friends are always wanting to know what can we do to help. And we did use them as well a lot, mainly for food preparation. If you don’t have a large family, having people in the hospital to walk in the hall, and to carry all that equipment and stuff, and to push through that pain, and to continue to be basically cheerleaders.

Shubham Pant, MD: Taylor, what do you think, when was the first time when you felt, saying I do need help? So, for a lot of our patients who are, they’re like, well, I can be strong through this and everything. But the thought is that however strong you may be, it’s okay to reach out for help. So when in your cancer journey, when did you feel like I’m going to reach out for help for this?

Taylor Bell Duck: I think a defining moment for me was the first appointment at the surgeon’s office. Dad parked in the parking deck and we were just going to walk over to the physician’s office. And I got about halfway across the cross-walk and realized there is no way that I can make it. And so that was kind of like a defining moment for me to say like, I’m really sick. And so I had to ask for a wheelchair. So it was the first kind of ask for help which was difficult. And then after the surgery, I didn’t have a choice but to ask for help. I mean, I couldn’t sit up alone. You just learn to ask for it and be gracious, and thankfully I had a support system and family and friends that were as awesome as they were.

Shubham Pant, MD: And so how many brothers and sisters do you have?

Taylor Bell Duck: So I’m 1 of 5.

Shubham Pant, MD: 1 of 5.

Taylor Bell Duck: Yeah. I have an older sister and three younger brothers, so my sister was a huge support person for me, particularly because we’re very close. We were born two years apart to the day, so she was a good person for me to kind of lean on and be able to talk to. Obviously, she’s very close with my parents as well so she was able to relay some stuff to my parents that I necessarily either didn’t want to talk or it was easier to talk to her sometimes. And my three younger brothers are younger, so they were still in school at home, and we thankfully had friends, and family, and my grandmother who was able to care for them, so that my parents could be with me while I was in the hospital.

Shubham Pant, MD: It’s amazing, so everybody came through and everybody.

Taylor Bell Duck: Everybody chipped in.

Shubham Pant, MD: At that time at 21, was there a time when you took a pause after, Taylor? Adrenalin is pumping, everything, you’re saying, okay, let’s get a resection, let’s get. When was a time when you took a pause and said, this is different, this is not normal? What did you learn about yourself, and Taylor, and your older daughter about coming together as a family?

Nancy Bell: Well, I learned that we were really strong. I knew we were strong, but I don’t think I realized exactly how strong. I realized that we had a unique story. There was nobody that we were aware of that had walked this walk, and so I think from the very beginning we realized that we had a message to give that this is not a normal experience.

Shubham Pant, MD: And you could help other people along the way. So tell me, you’re a social worker, Nancy, before?

Nancy Bell: Um-hmm.

Shubham Pant, MD: And how did that help you, your training help you take care of Taylor?

Nancy Bell: Because of my career, I’ve seen lots of people go through a lot of medical issues and other types of hard times. And so it gave me great hope because I knew that we could get through this. It helped me know. I knew how to network and I knew a little bit about medicine, so I wasn’t coming at it from a totally, I wasn’t from a total different area. I had worked as a medical social worker in dialysis and in some other areas, and it helped me a lot in terms of vocabulary and just familiarity. And I wasn’t afraid of a hospital.

Shubham Pant, MD: So it’s not like all just a maze to you.

Nancy Bell: Right, it wasn’t all new.

Shubham Pant, MD: You kind of could understand it a little bit.