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Ask any caregiver what keeps them going, and you will hear a common answer: love. Caregivers support people living with pancreatic cancer in every way imaginable — from lending a listening ear and attending appointments to helping with practical tasks like grocery shopping and paperwork.
For those fortunate enough to have a strong support network during difficult times, it can be easy to forget that primary caregivers — often a spouse, sibling, parent or chosen family—need care too. In this conversation, we speak with Karina Gutierrez and Alexis Rodriguez, two PanCAN Patient Services Senior Case Managers dedicated to helping everyone affected by pancreatic cancer, including caregivers. They share their thoughts on the importance of caregiving and how we can all support the selfless, special caregivers in our lives.
Tell us more about caregiving. Is it usually one person who provides care, or is it a team effort?
Alexis: Although most caregiving tasks can be separated into medical, emotional, or practical support, each patient will have their own specific needs. Therefore, it’s important for caregivers to have discussions with their loved one about how they can assist. Caregivers can also play a vital role by being an advocate for patients.
Alexis Rodriguez
Caregiving can involve a sole, primary caregiver or a support network of family and friends. It’s helpful to have a conversation with the patient and family members about roles and responsibilities and how different people can help, especially when there’s a large family or support network. Someone may take on meal prep and cooking, for example. Someone else may coordinate appointments and medical care. One role could be fielding questions and updating friends and family. There are a variety of jobs large and small people could take on.
Let’s talk more about how caregivers may serve as advocates for their loved ones. What might this look like?
Alexis: Doctor’s appointments can be overwhelming. Sometimes it’s hard to absorb what is being said. Having a trusted caregiver in the room to take notes, ask questions and follow up can be helpful. One option is to ask if it’s okay to record the conversation, that way the patient and caregiver can review later and revisit what was said to ask for more information or to clarify what was discussed. Bringing someone else in to serve as a sounding board and to communicate with the healthcare team can help to ease anxiety and manage the flow of information.
It’s common for caregivers to struggle balancing their own needs and the demands of providing care. What are some common difficulties you hear about, and what strategies can caregivers use to prioritize their own well-being?
Karina: Some of the common difficulties I hear about the caregiving role is how to balance multiple responsibilities, like managing the home while working full-time, remaining hopeful and well-versed in the disease and finding time to recharge. Given all of these competing demands, it is important for caregivers to remain vigilant about their own needs. Prioritizing self-care, asking and allowing for help from friends and family, connecting with pancreatic cancer-specific organizations, such as PanCAN, and recognizing one’s own boundaries and needs are a few strategies that caregivers can use to prioritize their well-being.
Karina Gutierrez
We often talk about how Patient Services is for everyone, not just people living with the disease. What kind of people do you hear from, and what can Patient Services do for them?
Karina: I am always inspired by the wide variety of people who call us. We hear from people eager to help loved ones who just aren’t sure where to start. Together we talk about the disease, how to talk to someone living with pancreatic cancer, what different types of support look like and so much more.
Patient Services truly is for anyone, not just caregivers and patients. We are here to take questions and provide information to friends, family, coworkers, acquaintances, anyone who is curious about the disease and how they can help. We are proud to be there for every person touched by pancreatic cancer. Imagine your Case Manager standing next to you in the clinic, at work, the grocery store – anywhere you need help and information. We are here as your network of support.
What are some suggestions for how to support caregivers?
Alexis: We often get this question from people calling Patient Services! They may be friends or colleagues with a caregiver for someone diagnosed with pancreatic cancer and they want to know how to help. Here are some of the top tips we suggest:
- Offer to help. But instead of just letting your friend know you are there to help, offer concrete assistance, such as cooking meals, picking up their kids from school, taking them to practices, picking up prescriptions or driving the patient to doctor’s appointments.
- Plan a fun outing for your friend. Make dinner plans, go to a funny movie or comedy club. Sometimes simply a long walk can be what they need.
- Show you are willing to listen without judging. Understand strong feelings and thoughts are appropriate for what your friend is going through.
- Do not hide or shy away from your friend. Even though it is difficult to find the “right words to say,” let your friend know you are there to listen and you are thinking of him/her. Communicating care, concern and love is one of the greatest gifts.
Some caregivers and loved ones who contact Patient Services worry that the helpline may not be for them. What are some common misconceptions, and what types of support can be offered to a caregiver?
Alexis: One of the most common misconceptions about Patient Services Help Line is that we can only assist patients. We support everyone! Our team of expert Case Managers are available to connect with both patients and caregivers to provide personalized information and resources. We are here to empower caregivers to ask questions, have meaningful conversations with the healthcare team and make sure their needs are met while they support their loved ones.
Many caregivers find it helpful to connect with others who have experienced a similar situation and have navigated the difficult conversations that may arise. Our PanCAN Survivor and Caregiver Network matches pancreatic cancer caregivers with volunteers who have agreed to share their experiences and offer support.
How does it feel to provide daily support and a listening ear to everyone touched by pancreatic cancer, including caregivers?
Karina: A pancreatic cancer diagnosis impacts patients and their loved ones in different ways. The amount and type of support they need varies from individual to individual. Being a source of support to those affected by this disease is meaningful and feels purposeful. It truly is a privilege to be considered to walk alongside individuals during some of their most difficult and vulnerable moments.
