Time and again we hear stories of the love, service, and sacrifice caregivers provide while supporting clinical trial participants through their journeys. From shuttling research volunteers back and forth to appointments, offering emotional support, and reminding participants to take medications or fill out diaries, caregivers are often among the unsung heroes of clinical research.
In the videos below you’ll meet three pairs of participants and caregivers, each with a unique story. We hope you find as much inspiration in their stories as we do.
“You can do it alone, but it’s nice that you don’t have to.”
Meet Pamela and Brent. They’ve been married for 22 years. Pamela has Non-Small Cell Lung Cancer and is participating in an investigational clinical trial. Brent is her caregiver. In this video, we will hear from Pamela and Brent as they talk about dealing with the day to day challenges of Pamela’s diagnosis as a team, working together to create a new normal, and the benefits to participating in a clinical trial with a partner.
It Takes Two: Pamela and Brent’s Story
Pamela: My name is Pamela and I was diagnosed with, um, non-small cell lung cancer.
Brent: And um, I’m Brent I’m her husband, been married 22 years, I’m her caregiver, caretaker her, anyway I, I’m the person who’s her second half and help her out.
P: When I was diagnosed, one of the things that, um, helped me recognize that something was not right, um, was because we play tennis, and on the tennis court I had a, a really difficult time catching my breath, unusually so.
And then I realized I was having trouble just doing the simplest things.
B: And in my job, um, I’ve always been a strong but with this, you know, just, it, it gets real.
P: It is harder on your family members for sure.
The Monday after the biopsy, he had told me I have an appointment, to both get a second opinion and because she had a very interesting trial going on.
We went to a facility where we were there all day. Felt so, you know, lucky that Brent was able to go with me and spend the day with me and, and go through that.
P: It does make it better, you can do it alone, but it’s nice that you don’t have to. Brent’s very important to my, um, getting through this, it’s, um, a blessing for sure.
B: You need a caregiver, and you need the person who’s taking the treatment to be together because, both our personalities are a little different, and, for our instance Pam likes to put on a game face, and no matter what she’s, she’s on and she’s happy, and she’s good and then by the end of the hour with the oncologist or the study doctor, she, the truth starts coming out like ‘yeah, I have a couple ailments.’ You need both people to get the information, it’s hard to take in all the information that’s given to you, and you start learning and you start asking questions, and the longer you keep going back to the doctors, or you keep going, you have a perspective, and you know what to really ask for, the way to do it is with a team, you need to go with two different people I think or, if it’s a spouse or a friend or something, I suggest you have a friend or somebody special with you so it helps you get through.
P: Eleven months before my diagnosis, um, my father passed away from cancer. Being the caregiver for him, um, was the hardest job, I was, there was no control in it. It’s really hard to be the caregiver, um, so I have a lot of, um, compassion for my family, um for Brent, and, um, the people that are, are helping us.
B: You change your attitude, you change, um, your perspective on,what,how things should be, your new normal is here, and you try to get your new normal here, and you try to get your new normal here.
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“There are challenges, yes. Faith and humor is what gets us through on a regular basis.”
Meet Gretchen and Michael. Gretchen and Michael both have Parkinson’s disease and act as each other’s caregiver. Listen as they talk about their experiences with clinical trials and caregiving, and learn how what started as a business relationship between the two grew into life-long love.
It Takes Two: Gretchen and Michael’s Story
Gretchen: I’m Gretchen.
Michael: And I’m Michael.
G: And we both have Parkinson’s and we’re also caregivers for each other. Michael’s had Parkinson’s for 20 years. We met, er, 16 years ago. And I’ve had Parkinson’s for 17 years. He was actually the very first person that I’d ever met that had Parkinson’s.
M: Err the issues we’re facing were so vastly different that it required a different level of treatment. Yeah, our medical doctor really put it on the table as a clinical trial and it piqued our interest enough that we participated.
G: The study teams have been, every study team that we’ve had has been absolutely fabulous. They recognize, they’ve always recognized the role of the caregiver.
It was difficult as a caregiver because I was very symptomatic myself so I had and I had a lot of support from family but his sister I think put it best when she said I learned a lot about you. She said you’re a rock until he’s safe and then you’re free to fall apart. I’m a full believer that a caregiver needs to be, you know, is part of a team from day 1 and if Michael’s the captain of his team well I’m the co-captain. And then vice versa if I’m the captain of my team he’s the co-captain.
On the trials that I’ve been involved with they’ve been great about letting Michael um, you know, see and watch and participate.
We were in our 30s during our diagnosis. We didn’t go into this whole thing with the idea of it being a romance, we went into it as business partners. Somewhere along the way we realized we made very good business partners and then we realized we made excellent life partners. And you can’t help (Michael interjects: can’t argue with that) you can’t help but who you love.
There are challenges, yes. Faith and humor is what gets us through on a regular basis. Usually one of us will be falling and we’ll be laughing asking if we’re okay on the way down, only to laugh harder once we find out we’re okay.
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“...We were hesitant at first...just trying to understand all of the factors involved with making that decision.” – Rubecca
Meet mother and daughter, Rubecca and Anjali. Anjali developed psoriasis as a child, and Rubecca acts as Anjali’s caregiver. In this video, we learn about their introduction to psoriasis clinical trials from one of Anjali’s doctors, the factors they took into account when considering participation, and their experiences as research participants.
It Takes Two: Anjali and Rubecca’s Story
Rubecca: Hi I’m Rubecca and this is my daughter Anjali.
Anjali: And I have psoriasis.
R: Yeah as a baby she was always really happy, she was the first born so she was everybody’s favorite, everyone was excited, um, my parents especially, all of our family’s in the local area. When Anjali was about in, maybe third grade or so, you’d notice it after I was doing her hair after a bath one time, that she had these, um, like bigger flakes in her hair, and it wasn’t until we visited a couple different, uh, dermatologists that said she might have psoriasis.
A: I don’t remember a lot, just uh, like the burning and the trying different doctors.
R: Um, then eventually it did progress and build up and it got very red. So we were at, uh, we first heard about the trial through one of her routine doctor visits, our doctor had told us that there was a clinical trial available for her psoriasis, so we were hesitant at first, you know, looking into okay well what does it mean for her, um, both from a side effects standpoint as well as from a logistics standpoint, in terms of how do we get her to her appointments, does she have to miss a lot of school, um, just trying to understand all of the factors involved with making that decision.
A: There were a lot of times when I just really wasn’t in the mood to fill out the different things that the diaries and stuff, but I knew that it had to be done to, for them to get the correct information.
R: I think the, er uh, the person who was running the protocol had mentioned, that for the younger people in the study, that was something that some of the other mums would have to do, because, you know, the child was too young to write or something like that, but her diaries, it was my job to make sure they get turned in and not forgotten at home before we went to the doctor’s office.
My responsibilities were more, I think it was minimal compared to most because she was a bit older, but um, definitely, I think that the biggest thing for me was the scheduling and trying to just make sure that between school and work that she was able to get to where she needed to be on time, that she was taking her meds.
A: Yeah I’d have to call my mum, I’d have to tell her to come bring it, because I’d be gone for the night and the morning, so I didn’t want to miss two, so she would have to grab it and come bring it to wherever I was.
R: Yeah when she would go for a sleep over then I would get a call, ‘Mum can you come and drop my medication off?’
Other kids notice things or people say things to her, I could tell if she came home and her feelings were hurt but she didn’t want to tell me why they were hurt, so I think in that respect that was for me harder, because you know kids at a young age, when they are very young they don’t know what it is, and then as they get older sometimes they’re just plain mean. But throughout it all I would have to say she’s been very brave and I think she is a very confident young lady now.
A: Cos I know if I do have a problem or anything, then I know I have someone who I can go talk to, to get help with.
R: We hadn’t had any exposure to clinical trials until her doctor had mentioned that that was an option for her. So I mean it definitely brought us closer together to because even though some of the visits were really long car rides it would give us a chance to actually break away from the day to day, talk about school, how the day went, anything else that might be bothering her, or even fun things that happened that we don’t, normally don’t get the chance to.
A: It’s definitely a good idea to try cos it’s something different and something that not a lot of people have tried, so if it, if it has a chance of helping it’s worth a shot.
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Thanks to the many people who participate in clinical studies each year, and the people like you that support them, scientists are better able to understand and potentially treat all types of diseases.
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