Common Issues When Discussing Cancer Caregiving

When you’re a caregiver to someone with cancer, you can find yourself in a lot of conversations. You’re discussing your loved one’s care with doctors, nurses, and administrative staff. You’re calling insurance companies or home aide agencies to navigate reimbursement or paperwork issues. You’re sharing updates or calls for support with friends and relatives. And, of course, you’re helping your loved one process complex information, emotions, or decisions. 

Not all of these conversations go smoothly. Sometimes things pop up that we didn’t anticipate. Avoid miscommunication or hurt feelings by learning how to recover from unexpected conversational hiccups. 

Here are some common issues that can derail cancer caregiving discussions and what you can do or say when they happen.

General Strategies

Regardless of the issues that arise, there are some general strategies you can use to help difficult conversations go more smoothly.

Try to Stay Calm 

You need a level head to express yourself clearly and truly listen to what the other person has to say. If you can, try to postpone conversations when you’re upset or step away for a minute so that you can take some deep breaths and calm down. 

Know What You Need 

It’s easier to keep a conversation focused if you have a goal in mind. What do you hope to get from the discussion? Is there a particular decision that needs to be made or a next step to identify? Before talking with someone about caregiving, zero in on 1-2 things you’d like to share, discuss, or decide. For example, if you’re burnt out or overwhelmed, think about what specific things you need to happen in order for you to recharge or manage your responsibilities better. 

Do Some Prep Work  

If you’re not sure how the conversation will go, ask someone who’s been through it themselves to share their experience or offer suggestions. Do some research into what you should expect and what might be helpful to learn going into the conversation. For example, if you want to talk to your loved one with cancer about hiring a home health aide, read up on the pros and cons, and think through what questions they might want answered before making a decision. 

Ask for (and Listen to) Their Input  

Even if you think you know what needs to be done, involving the other person in the decision-making process can reinforce the fact that you’re on the same team. Ask open-ended questions like “How do you feel about this?” or “What do you think would be best?” And be open-minded when they respond. You might find solutions together that neither would have thought of on your own.

Not Wanting to Be a Caregiver

Not everyone who is a caregiver actively chose to be one. According to a 2020 report published by the AARP, more than half of unpaid caregivers surveyed in the United States said they felt they had no choice in the decision. Perhaps unsurprisingly, this was more common among those caring for someone close to them, like a parent or partner.  

Assuming the physical, emotional, and sometimes financial strain of caring for your loved one—especially if you didn’t feel like you had a say in the matter—can take a toll on your physical and emotional well-being. In that same AARP report, 48 percent of caregivers who didn’t feel they had a choice when they took on the role say they experienced high levels of emotional stress, compared to just 23 percent of caregivers overall.

When you don’t want to be a caregiver, even talking about caregiving tasks and responsibilities can be frustrating. And walking into any conversation frustrated can dial up the tension for everyone involved. 

Before you discuss cancer caregiving with anyone else, it can be helpful to pause and ask yourself: Why don’t you want to be a caregiver? Is it because you’re overwhelmed? Is it too much of a time commitment? Is seeing your loved one experiencing cancer too distressing for you to handle? Be honest with yourself because how you answer might affect how you proceed. 

If you’re burnt out or don’t have enough time, tell your loved one sooner rather than later so that you can come up with a plan together on who else can help and when. If you’re having a hard time seeing your loved one go through treatment or transition to hospice, talk to their oncologist about support groups or mental health professionals who might be able to help.

Finding a solution upfront can make for smoother discussions going forward.

Hurtful Comments

Caring for someone with cancer comes with a lot of ups and downs. It’s often an emotional and stressful experience, and sometimes things get heated. Mean things are said. Frustrations are vented. Both parties can walk away reeling and wounded. Learning how to recover from these comments—whether you said them or they did—can help you stay focused on the topic at hand. 

Here are some tips to keep in mind when things get ugly:  

• If you said something hurtful: Apologize. Acknowledge that what you said was hurtful and say you’re sorry. Then forgive yourself and commit to doing better in the future. Your loved one might need a little space to recover. Let them have it.
• If they said something hurtful: Don’t retaliate. What they said might have more to do with them than you. Try to see things from their perspective and not take it too personally. Why might they be lashing out? Could they be tired or frustrated about something else? It might be the discussion you’re having isn’t the one you need right now.

Lack of Additional Support

Even when you feel you had a choice, caregiving responsibilities can get overwhelming, especially when you don’t have any extra support.

Cancer caregivers tend to juggle more responsibilities than other kinds of unpaid caregivers, often talking to healthcare providers, scheduling appointments, and dealing with billing or insurance issues on top of any personal care they might provide. Yet only about half of caregivers report getting any additional unpaid help from other friends or relatives, leaving many primary caregivers to be the sole caregivers for their loved ones.

This is particularly true for those caring for partners. Two-thirds of those caring for a spouse or partner say they had no other paid or unpaid help. 

When you’re the one bearing the brunt of the caregiving duties, it can feel like you’re tackling the hardest stuff on your own—including engaging in the tough conversations like when to cease treatment or transition to hospice. 

If you’re having a hard time getting other family members or close friends to engage or agree, bringing in an outside facilitator, like a counselor or religious leader, can help you navigate tricky conflicts or emotionally charged topics.

Disruptions or Distractions 

Sometimes conversations aren’t linear. People tune out; nurses walk in. Whatever you were discussing stops before you’ve reached a resolution.

Ideally, you’d wait to start a conversation about cancer caregiving until you know you’ll have time to finish it. But life isn’t perfect, and it’s not always easy to predict when or how a discussion will be disrupted. 

If you sense the person you’re talking to has checked out or is otherwise distracted, don’t try to force it, especially if you’re trying to come to a decision about something important. While caregiving topics are often time-sensitive, they are rarely an emergency. Pause the discussion, and revisit it when the other person can give you their full attention.

Unclear (or Unrealistic) Expectations 

You might walk into a conversation with an idea of how things will go, only to find yourself facing pushback or assumptions you didn’t anticipate. Maybe what you thought would be a simple decision is more complicated to the other person. Maybe they expected you to gather information you didn’t realize was your responsibility. Or maybe others have a different idea of how or when decisions will be made, who will make them, or whether they’re set in stone once they're decided.  

If, for whatever reason, you find yourself out of step with the person you’re talking to, it can be helpful to acknowledge it outright so that you can address it and move on. Calmly explain what you thought the expectations were, and listen when they tell you theirs. If things are still unclear, ask questions to clarify. Once you feel like you both agree on what to expect, pick the discussion back up or start over from the beginning. The conversation should go a little smoother from there.