Exploring the patient-caregiver relationship: The story of a family's journey navigating a cancer diagnosis
Posted: March 02, 2021 | Word Count: 1,337
When faced with a cancer diagnosis, life often changes drastically, with each person experiencing the impact differently. One change that can cause great uncertainty is an unexpected shift in relationships, especially with family or those closest to the patient. For some, the established family dynamic can quickly shift into a relationship of patient and caregiver.
This was the case for Jordan Mendelson, who was diagnosed with diffuse large B-cell lymphoma (DLBCL), a cancer that grows in lymph nodes, the glands in the neck, armpits, groin or abdomen. In an instant, Jordan’s parents and his older brother became his caregivers, supporting him as he navigated treatment and management of his disease.
DLBCL is the most common type of non-Hodgkin lymphoma (NHL) in adults worldwide, and there are around 28,000 patients diagnosed with the disease each year in the United States. It can affect people of any age, though more than half of new cases are diagnosed in people over 65. In Jordan’s case, he was 23 and just days before starting the spring semester of his pre-med program when he received his diagnosis.
Symptoms of DLBCL include painless swelling in the lymph nodes, unexplained fever, drenching night sweats, persistent fatigue, weight loss, a rash or itchy skin, pain in the chest, abdomen and bones, loss of appetite, sensation of bloating or fullness, enlarged spleen or liver, cough and skin lumps, among others. For Jordan, while on a family vacation, he felt a lump in his left armpit; after discussing his symptoms with his family, it became clear that he needed to see a doctor. Within a month, it was confirmed that Jordan had DLBCL, and that’s when everything changed.
“It was startling — it really is scary to hear any cancer diagnosis. And when the surgeon told me, while the news was hard to hear for myself, I found it even more difficult thinking how I would share this news with my family,” says Jordan.
Following the devastation of a DLBCL diagnosis — or any cancer diagnosis — figuring out how to balance relationships can take time and pose unique, unexpected challenges along the way. The DLBCL journey in particular has been described as one of continual ups and downs.
Patients may worry they are a burden, or alternatively, feel responsible for the emotional support of their caregivers. Caregivers often want to provide help in any way that they can but may not know how to truly empathize with what the patient is experiencing. Both may have a fear of the unknown, or frustration.
Please remember that your healthcare provider remains the best source of information regarding your treatment and condition.
To support both patients and caregivers, Jordan and his family shared tips they found helpful as they navigated their own patient-caregiver journey together:
1. Lean on your friends and family
A good support system makes all the difference. For a patient or a caregiver, while it may feel difficult at times, it can be helpful to open up and lean on family and/or friends, even if it seems like you are better off handling the situation on your own.
“What I say to people now is, I might have been the only person that had cancer, but we all fought it together — and I think that is really important to maintain perspective on,” says Jordan. “Even though you can sometimes feel alone, it’s important to remember those supporting you are going through the experience with you, even if they are not the ones receiving treatment. They go through the emotional highs and lows just like you do. My family — my parents and my brother — were instrumental to me during this entire process as I was going through the diagnosis and then treatment.”
“A cancer diagnosis changes everything — it changes the family, it changes the dynamic, but it’s very important to keep your head about you and remember that you are all in this together, especially when tensions are high,” says Eric, Jordan’s father. “We were very fortunate to have a great support system during this experience, among the four of us and beyond. As the parents of a sick child, you can’t do this alone. Jordan’s friends who reached out to help him, helped all of us. Those are the people we will be eternally grateful to. I don’t care who you are and how strong you think you are; you cannot do this alone — and I know the support we received was invaluable.”
2. Openly communicate
Ongoing communication between patient and caregiver is crucial. As a patient, it is important to be honest about how you are feeling, and let your caregiver know if you need something — even if that something is simply a little space.
“This experience was a significant adjustment for everyone at the beginning, but the patient-caregiver part of our relationship got much easier as time went on – so just give it time,” says Jordan. “At the beginning, it was difficult because no one knew what to do or expect, but after that first treatment cycle, it became more familiar and we were able to get into our individual roles more easily. For us, it was a very transformational change to the caregiver-patient dynamic when we were able to be honest with each other about how we were feeling and what we needed in the moment.”
And for someone in a caregiver role, it’s equally important to be open about how you are feeling and coping with the situation — just because you are not the one undergoing treatment does not mean you are not impacted by what is happening.
3. Don’t be afraid to ask for and accept help
As the Mendelson family can attest, there may come a time when help is needed from outside of the patient-caregiver relationship in order to get through a step in the journey. There are many organizations that can help provide tailored support for your specific cancer and relate to the experience both patients and caregivers are facing.
“Talking with other people going through what you are, such as other caretakers or a professional, can really help,” says Debbi, Jordan’s mother. “Shortly after Jordan’s diagnosis a social worker told me about resources and groups, and at the time, I didn’t feel like that was necessary … but it was. For me, especially toward the end of treatment when some of the immediate shock was over, talking to others really helped me process the experience. I highly recommend getting connected with an organization that understands what patients and caregivers are going through.”
4. Try to maintain some normalcy in your daily life
For both patients and caregivers, the logistics of figuring out how to cope with a cancer diagnosis and ongoing treatment may at times seem like all there is. But it’s not, and the Mendelson family believes finding a way to keep elements of your everyday life intact can help.
“For me it was school, but it could be anything — a job, a hobby — just try to keep that up,” says Jordan. “It’s important to remember that even though it feels like all you are is a cancer or lymphoma patient, that isn’t true – you are more than that. And doing those normal, everyday activities when you can does help.”
Josh, Jordan’s brother, summarizes his family’s experience navigating the DLBCL and patient-caregiver journeys as follows: “Our relationship as a family has always been close-knit, and I think this really brought us even closer. For us, it was all about taking each day one step at a time. The most critical thing you can do is be there for each other. Sometimes Jordan appreciated us doing nothing more than anything, so learning how to be understanding of our individual needs was important — and knowing that you’re all in this together.”
To find resources and support for patients and caregivers navigating a lymphoma diagnosis, visit the Lymphoma Research Foundation at https://lymphoma.org/resources/.