How to Avoid Cancer Caregiver Burnout

Cancer caregiver burnout, also known as caregiver fatigue, is the physical, mental, and emotional exhaustion that affects people who are taking care of cancer patients.

It’s a common problem among family members, partners, or close friends, since they usually don’t have the training that a professional caregiver does.

In my practice as a cancer coach, I’ve seen the negative impact that caregiving can have. I also saw caregiver burnout in my husband when I was going through cancer myself.

Even with the best intentions, looking after someone with cancer takes a huge toll on the caregiver.

Sleepless nights, being at their beck and call, worrying about the financial cost of treatments, running all the errands and chores, and watching someone they love suffer, can overwhelm anyone.

Being a cancer caregiver brings up a lot of emotions – which often can’t be expressed or released for the sake of the sick person.

The fact that it usually happens overnight adds an extra burden…

There’s no time to prepare.

In this article, I’m sharing the main causes of cancer caregiver burnout, why it’s dangerous for both the patient and the caregivers, and how to set boundaries to avoid it without compromising the relationship.

Understanding Caregiver Burnout

In a study conducted in 2016, 43% of cancer caregivers reported needing help handling the emotional and physical stress they were under.

Up to 40% experience caregiver burnout.

It’s no wonder that, with numbers like these, caregivers are desperate by the time they find support. They often haven’t been listened to before.

Getting to that point of overwhelm is caused by many reasons, including:

1. ROLE CONFUSION

Caregiving changes relationship dynamics: a sibling, spouse, or friend, goes from a 50/50 partnership to owning up to 100% of the relationship (care, chores, attention, etc).

People taking on caregiver roles for their parents get it even worse. Used to being the one taken care of, they now exchange roles entirely and that can be hard to digest.

2. UNREALISTIC EXPECTATIONS

Initially, there’s hope of being able to control the ill person’s outcome. But it’s soon followed by disappointment or a strong feeling of helplessness when they realize there’s a lot out of their hands.

3. LACK OF SUPPORT

Cancer patients may have support available from loved ones and professionals, but caregivers are often left to fend for themselves.

This puts a strain on them as they don’t have space to express or release their emotions of fear, anger, frustration, and sadness. Over time, it can lead to depression and burnout.

4. ADDITIONAL CHORES

Caregivers often have to take patients to doctor’s appointments and tests. They become the only person in the household doing chores and running errands, and the financial burden usually relies on them. If there are kids, caregivers end up assuming the responsibility of raising them on their own too.

This puts a lot of pressure on the caregiver and takes away their only time to rest and relax, rendering them exhausted.

Cancer caregiver burnout can have major implications, like…

• Isolation and feelings of helplessness
• Depression
• Anxiety and sleep deprivation
• Resentment towards the ill person or others

But it also hurts the cancer patient, who may feel guilty for putting the caregiver in that situation or try to avoid asking for support if they can feel resentment building up towards them.

That’s why it’s important to understand burnout and learn how to recognize its signs before it’s too late.

Recognizing Signs and Symptoms of Caregiver Burnout

The biggest problem with caregiver burnout is that by the time it’s diagnosed, it’s often too late. Up to 30% of cancer caregivers experience depression as a direct result of their role.

This happens because there isn’t enough information out there – so here are the main signs and symptoms of caregiver burnout to look out for:

1. IRRITABILITY & MOOD SWINGS

Being more impatient or annoyed –generally with the person you’re caring for– can put a strain on your relationship that lasts beyond the caregiver-patient dynamic.

If you feel like you’ve had a shorter temper than usual, with small day-to-day mishaps causing big outbursts of anger or overwhelm, it’s time to take action.

2. FATIGUE & SLEEP DISRUPTION

Physical signs of caregiver burnout like fatigue and disordered sleep patterns are usually the result of persistent anxiety and stress.

Anxiety is common among caregivers because they often keep their feelings of worry (about their loved one passing away or getting worse) to themselves. Sometimes guilt is involved too when they feel like they’re not “doing enough” even if they’re completely overstretched.

If you feel exhausted even after sleeping or have trouble falling or staying asleep, your body and mind are telling you that something needs to change.

3. PHYSICAL CHANGES

Losing or gaining significant weight and getting sick too often are your body’s signals asking for support.

Some caregivers will resort to comfort food (gain weight), others may lose their appetite (lose weight), and others may have a weakened immune system from the pressure of constant stress, worry, sadness, and tiredness.

Looking after yourself is crucial to maintaining your ability to care for your loved one, but it’s also something you should prioritize for your own sake.

4. ISOLATION & SOCIAL WITHDRAWAL

If none of your friends, colleagues, or the people around you understand what you’re going through, you start to feel alone in your situation.

This is something most caregivers experience, especially if they’re young (under 50) because most people in their lives haven’t been in their shoes yet.

Some choose to withdraw from social interactions after failed attempts to be understood. Others turn to alcohol or medication to numb the stress.

Getting isolated doesn’t solve the issue – it often worsens it. Caregiving is tough, and maintaining a healthy social life is an outlet that can help prevent depression.

5. LACK OF SELF-CARE & PLAY

In my practice as a cancer coach, I’ve seen too many times how caregivers will stop taking care of themselves or doing the things they love (like hobbies) out of guilt or lack of time. Soon after, their sense of self starts to dwindle as they make their entire lives about caregiving.

There’s a belief that if you’re spending time on yourself, you’re taking away from your loved one who needs you.

But that’s simply not true.

Cancer patients need a lot of support, but when the person next to them is visibly exhausted or they can see a decline in their health and mood, they too will withdraw and stop relying as much on their caregiver.

This is bad for both!

If you don’t feel like doing the things you love anymore, or you don’t have any energy left for basic self-care like bathing, eating, or medical check-ups, please know this is a major red flag that should be addressed right away.

6. COGNITIVE DECLINE

Forgetfulness, difficulty concentrating, brain fog, and poor judgment when making decisions are clear signs of exhaustion.

This poses a high risk for both the caregiver and their loved one, and it’s usually caused by the mental and physical fatigue that accompanies burnout.

Being tired is uncomfortable, but being burnt out makes life extremely hard.

If you feel like every minor task takes a huge amount of energy and time, it may be time to find alternative caregiving options that allow you to take a break and recover.

The Importance of Setting Boundaries to Avoid Caregiver Burnout

As with everything regarding cancer, I’m an advocate for prevention. Caregiver burnout is no exception.

And the only way to prevent caregiver burnout is to set clear boundaries when things are still going well (meaning, you have the energy to cope with your caregiver duties).

Boundaries allow you to balance your role with the other demands of your life. They minimize the negative impact of cancer in the relationship, and they promote a feeling of empowerment in the cancer patient.

Without boundaries, your loved one might feel like they depend on you for everything. This can trigger feelings of helplessness and thoughts of being a burden to you.

If you set clear boundaries soon after the diagnosis, you can create an opportunity to build a larger support network that benefits both yourself and the cancer patient.

This gives you time to rest and continue doing the things that make you feel like yourself – something most caregivers lose when they don’t have professional training, because they feel compelled to adjust their entire lives to their loved one who is sick.

But the most important reason to set boundaries is how drastically they reduce misunderstandings, resentment, stress, and mental health implications.

This keeps the relationship healthy, with open communication, and can contribute to better outcomes for both.

And if you’re thinking “But isn’t this selfish? Isn’t it wrong?”, the answer is a hard no.

Believe it or not, your needs are just as important as those of your loved one with cancer.

There’s a saying that goes “You can’t pour from an empty cup”, and no relationship is better described by it than that of a cancer patient and their caregiver.

Setting boundaries allows you to manage your time and resources in a better way. Showing up well-rested, relaxed, and at peace promotes a healthy relationship where you have the mental capacity to handle your loved one’s feelings, allowing them to share freely and build a deeper connection with you where they feel safe.

Boundaries prevent burnout, meaning the quality of your care remains the same throughout the entire course of the illness, and they help you stay strong and motivated to cheer up your loved one when they need it.

It’s important to be self-aware and understand your limits to set healthy boundaries that benefit both of you.

If you find it challenging to communicate your boundaries out of fear of hurting your loved one, consider asking for help from an experienced coach or counselor.

People tend to struggle with caregiving because of society’s pressure to take the burden of caregiving on top of their life’s demands.

But remember: nobody should dictate how you care for the person you love. Take time for introspection and be honest with yourself about what you can and can’t take on – this will benefit both of you in the long run.

Effective Strategies for Setting Boundaries

As a cancer coach, I know it’s not easy to do this – so let me share a step-by-step guide on setting boundaries as a caregiver. I promise, it will lighten your burden and improve the quality of care that you can provide for your loved one!

STEP 1: FIND YOUR LIMITS

When it comes to boundaries, the first step is understanding that what you’re willing to do and what you’re able to do are often not the same thing.

You may be willing to stay up all night every night if it means comforting your loved one…

But if that means not being able to fully show up in other parts of your life (career, friendships, family) – are you able to do it?

Exploring your limits is the key here. Ask yourself:

1. What does this role require from me? How much time, money, and resources do I need to invest in caregiving based on this person’s diagnosis, treatment choice, and prognosis?
2. Realistically, how much free time do I have every day?
3. When someone tells me upsetting news, how do I handle it? Who can support me? How much can I take while still feeling strong and optimistic?
4. What resources do I have? Financial and otherwise?
5. What are my physical limitations? Can I carry this person? What happens if I don’t sleep enough? Do I have any physical limitations myself?
6. Am I self-aware enough to handle my emotions? What are my patterns that might be unhealthy for them in this situation?

Don’t try to guess your way to these answers. Trace back to your last few weeks and do a full assessment based on evidence. If you have a therapist, counselor, or coach, ask them for help exploring your limits.

STEP 2: LEARN TO SAY NO

I’m not going to sugarcoat this: it will be difficult.

Most of us are conditioned to say yes always, even when we pay the price with our own health (both physical and mental). Things get even worse when we have to say no to someone we love who clearly needs us…

But it’s the most important step in the whole equation – here’s a scenario for you:

Imagine your loved one asks you to be with them while they’re undergoing treatment at the hospital. You desperately want to say yes, but you have a presentation at work that could land you a promotion, helping you cover the costs of their illness with ease and potentially access better treatment options.

If you say yes, you’ll be there with them at that time, but you’re missing out on something that could be a lot more advantageous in the long run.

If you say no, you can land that promotion, and help your loved one find support from someone else, a friend or a professional. You both end up in a better position.

Seems crystal clear, right?

But sometimes it won’t be as easy. Sometimes you’ll have to say no because you’re exhausted, and you may feel terrible for doing so. Or you’ll say no because you know you can’t handle the emotional toll without crumbling down in front of them.

It won’t be as crystal clear at the time, but it will save you from feeling resentment or lashing out at them in the future.

In my self-love course, I teach people the foundations of setting boundaries, including 25 ways to say no. Feel free to use that resource if you’re not sure where to start.

I know it’s hard, but you can do it! I’ve helped dozens of people start setting boundaries and the outcome is always positive. If you need help from a professional, you can always consider counseling to state your boundaries within a supportive environment.

STEP 3: CREATE YOUR NETWORK

Reach out to friends and family who could help out with chores, company, and any kind of practical or emotional support for both of you.

See who can be available when, what they are willing to commit to, and create a network where you can delegate tasks without overwhelming anyone.

This will ease your burden and allow your loved one to still feel connected to the people they love. It can also be a great way to avoid isolation for both of you!

Don’t forget to check if there are cancer associations near you where there could be in-person support groups for both of you, and feel free to join my online cancer support groups for patients and survivors or for caregivers.

STEP 4: ESTABLISH A ROUTINE

When I was diagnosed with cancer, the choice of treatment was surgery. I had to get a mastectomy but fortunately, I didn’t need chemo after it.

This is arguably the “shortest” route (time-wise) when it comes to cancer – and we’re talking about major surgery here…

So be prepared for cancer to last a long time. It could be months or it could be years. Establishing a routine straight away will help you integrate this into your life minimizing challenges and overwhelm.

To create your routine, take 3 things into account: caregiving time, personal time, and rest.

Then go back to steps 1, 2, and 3 to assess how to create this routine based on the resources you have available. This routine can be co-created with your loved one if they’re in the right headspace for collaborative, positive communication. Here’s what that looks like:

STEP 5: DIAL IN COMMUNICATION

Communicating effectively with your loved one (and other people in your support network) will be essential for setting boundaries.

For example, you’ll need to share with your loved one:

• How much time you have available for them on a daily/weekly basis
• Your needs, their importance, and the potential consequences of your needs not being met
• Where you’re at with your self-awareness journey, what patterns you’re working on, and which things you’ve identified as potential triggers
• The best way to approach you with their feelings and ask for help
• What you need to be well-rested and feel healthy
• What you need from them as a partner, friend, or family member

Open and honest conversations with love and mutual respect are beneficial for your relationship at this time.

Some key tips for this are:

1. Always come to a conversation when you feel calm and have had time to process your emotions to avoid reactions as much as possible.
2. If you feel triggered, take space to cool down before continuing the conversation – it’s better to hit ‘pause’ than end up getting hurt.
3. Never assume the other person is speaking with ill intent.
4. Stay open-minded. If what the other person is saying feels off, try to ask them to explain vs. jumping to conclusions.
5. Listen actively. Make space for both of you to share your thoughts and feelings. Don’t rush the conversation.
6. Think of you and your loved one as a team trying to solve a mutual problem – even if the problem seems one-sided.

This collaborative spirit will help both of you walk away from conversations feeling loved, respected, and fulfilled. Even if you can’t find common ground, you will come to a solution faster than by butting heads or silencing your needs out of fear of hurting them.

Self-Care Practices to Avoid Caregiver Burnout

Taking care of yourself isn’t just having space to rant with friends and getting good sleep. The key to self-care is building healthy habits. Start with the basics or the easiest ones for you and build your way up.

These are some of the practices I always recommend to caregivers:

Physical Self-Care

Are you eating a nutritious diet that provides you with energy, minimizes your health risks, and helps you feel better physically?

Are you getting 7-9 hours of sleep every night?

Do you drink at least 2 liters of water daily?

Do you exercise regularly? This could be taking a daily walk, yoga, or any form of physical activity done at least 3 times a week.

Try to cover these basics before moving on to things like skincare, tension release, proper posture, and environmental factors.

Emotional Self-Care

Processing and releasing your emotions is *crucial* while you’re caring for someone with cancer, because nobody prepares you for this.

You’re going to be dealing with your own fears AND theirs, paired with all sorts of emotions that arise as you both continue your patient-caregiver journey.

Here are 3 ways you can start protecting your emotional well-being to show up in a better headspace for your loved one and avoid caregiver burnout:

1. MEDITATION

Consistent meditation has been proven to rewire your neural pathways to process emotions in a healthier way. This can significantly reduce stress, anxiety, and feelings of uncertainty.

2. MINDFULNESS

Mindfulness helps you be more present and aware of your emotions, which gives you more power in dealing with them. I always suggest MBSR as a great way to tap into mindfulness, and you can also try getting started with my free Mindfulness Resource!

3. JOURNALING

Journaling is also a great option, especially for those who struggle to meditate. It can be therapeutic to let your thoughts and feelings out, and it’s been proven to help our brains organize thoughts and understand patterns much quicker.

Social Self-Care

Social self-care can be a game-changer for cancer caregivers. Humans are social beings, and we need that connection to feel balanced within ourselves.

Make sure you’re not isolating by keeping in touch with your friends and family. And if you’re feeling lonely or misunderstood, or simply want a community that can really get what you’re going through, find a support group for caregivers who are going through a similar situation.

Sharing your reality with others can help you get support and also give support, which builds your emotional connection with others and eventually lightens your burden as a caregiver.

You got this!

Cancer caregiving is really difficult, and I’d like you to give yourself credit for stepping up for someone you love.

That’s why I’ve poured my 16-year-long experience as a cancer coach into this article to give you my best advice to avoid cancer caregiver burnout.

I often call caregivers the “invisible heroes” because you really have the power to transform a cancer patient’s outcome – but you have to remember the key is in putting yourself first.

If you want to find others in a similar situation, join my free caregiver support group online or the waitlist for new caregiver group coaching options.

It will be important to find a community that gives you the attention you need right now, be it in person or online.

And if you’d rather get my help 1:1, my door is always open.

Love,
Catherine