So, someone you love has recently become a member of the world’s crappiest club and you’re their plus one. It’s a membership no one asks for – this is hard and we’re sorry you’re here. But hearing from others who have walked this path before can help. That’s why we asked some amazing care partners* in the community to help come up with a list of what they wish they knew when they were new to this experience.

^{*You may notice that throughout this article we often use the term “care partner” instead of “caregiver”. This is to better reflect the nuances of the experience. We view this to be a collaborative, mutual relationship rather than a one-sided dynamic, where the person receiving care is an active participant.}

1. It’s a steep learning curve.

In those initial appointments following a cancer diagnosis, it can seem like everyone else in the room knows what’s going on except you and your loved one. You’re suddenly trying to digest information about grade, stage, hormone receptors and possible treatment paths, all while meeting a full roster of medical professionals. It can feel pretty overwhelming and that’s completely normal. This is new terrain, likely forcing some big, serious decisions to be made earlier than expected.

The thing is, you don’t need to have all the answers. Over time you will start to understand what information is most important to focus on. Your role isn’t to be a medical expert, it’s to be an expert in how you can best support and advocate for your person; working with them to prepare questions ahead of time can help you both feel prepared and empowered in appointments. Resources created to support breast cancer patients, like Rethink’s Care Priorities, can help you know what questions to ask and better understand the mindset of someone experiencing a diagnosis.

Just remember that you’re learning a lot right now, so be kind to yourself.

2. Lean into your strengths.

There are so many ways your loved one needs support right now, so where do you start?

Grounding yourself in your natural strengths can be a good place to focus. Maybe you’re an organization pro who loves taking notes. Or are an effective communicator who can act as messenger to get updates out to family and friends. Or an enforcer who can help uphold some much-needed boundaries. Whatever it may be, using what you’re already good at to help your loved one through this process is going to make a big difference and likely help with some of those feelings of helplessness you might be struggling with.

Plus, the care responsibilities do not need to all fall on you, so why not…

3. Let others help where appropriate.

Realistically, you can’t do it all, so what things can you easily let go of? Be honest with yourself — are there small ways friends and family can help? The answer is likely yes, and here are some ideas of what that can look like:

Coordinating meals by starting a meal train
Helping with household chores like laundry, yard work or cleaning
Setting up playdates for kids or offering to babysit
Providing transport to appointments
Picking up groceries or medication
Taking on research about available resources
Simply being present

Not only does letting people help take some of the pressure off you, it can also give them a sense of purpose in an awful, chaotic situation.

That being said, with multiple helpers in the mix, understanding the boundaries of how you should show up as a care partner can get tricky. Ultimately, your role will be defined by the needs and preferences of the person you’re supporting, so…

4. Follow their lead.

Being a care partner can take many different forms, so knowing where your role begins and ends can be challenging. It’s important to listen to your loved one when they tell you how they want to be supported. They should have agency over their own cancer experience, and this includes how and when they receive help.

This might be difficult, especially if there are times you disagree with their treatment decisions or how they approach their care in general. Yes, you can voice your opinion, but ultimately this is their choice to make. It can be hard to accept, especially when it contradicts your personal values. Knowing where to push and where to let go are key to navigating this relationship. That’s why keeping the lines of communication open between you and your person during this emotionally charged period can help.

5. It might be uncomfortable, but getting on the same page is a game changer.

The needs, preferences and perspectives of the person you’re supporting may change over time, so making time for honest conversations to make sure you’re on the same page can help avoid any assumptions or misunderstandings and set up some boundaries. Some helpful topics to discuss include:

How they want to be supported – emotionally, physically, practically
Which tasks they want to handle on their own and where they’d like some help
What information is okay to share, and with whom; how they want to handle visitors and check-ins from friends and family
Their treatment goals and how they want to approach decision-making
Energy levels – where their levels are at and the types of activities they want to take on
How you are able and willing to help

These are conversations to have often and be prepared for the answers to change over time.

6. It might feel impossible, but it’s okay for you get support too.

If taking time for yourself right now brings up feelings of guilt, we get it – you’re not alone. But as the saying goes, you can’t fill from an empty cup. While annoying, this phrase is used so often for a reason.

At the end of the day, you’re human and your needs don’t stop when a loved one is in crisis, even when it’s cancer. Compassion fatigue is a real thing, and if you’re not taking care of yourself, it will come faster than you think. Even if self-care feels out of reach right now, we gently urge you to take a few small steps to protect yourself from burnout. This might be asking for more help, incorporating regular movement into your week, getting enough sleep or having a person to vent to when you’re feeling overwhelmed (think the “comfort in, dump out” method).

Another effective way to get support is to…

7. Connect with community.

Connecting with people who get what you’re going through can be incredibly helpful. We know the spaces dedicated to care partners can be a bit limited, but here are a few ideas for places to check out to get you started:

Social media can be another way to find others who share in this experience. You’ll find millions of posts from other care partners using hashtags like #Caregiver, #CaregiverLife, #CaregiverSupport, #CaregiverWellness and #CaregivingJourney or following accounts like Rethink’s, who often share care partner experiences amongst other breast cancer stories.

Keep in mind, the community you seek out doesn’t necessarily have to share in the breast cancer experience either – connecting to care partners who resonate with other parts of your identity, for example mom, husband, friend, partner, daughter, young person etc., can also be fulfilling.

No matter how much you want to, unfortunately, you can’t change the terrible fact that cancer has crash landed into your lives. That’s really hard to accept. Know that by showing up for your person, you’re making a difference. Keep going. 💗

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