Everyone Forgets the Carer

There is a consistent observation sitting within my clinical work that is painfully obvious. Everyone forgets the carer. I recognise that cancer sparks fear in everyone around the patient. I understand the dynamics that a cancer experience can bring an individual, as well astheir family and friends.

I don’t interpret that carers are asking for attention. But I do become curious about everything that sits beneath the surface when I work with a carer.

There are a number of common questions regularly asked which include the following:

• How long have you been putting yourself last?
• How much responsibility have you absorbed without noticing?
• How often have you swallowed your fear because your person already has enough to deal with?
• What resentment have you felt guilty for having?
• What boundaries disappeared the moment cancer entered the room?

Most importantly, and this one is a zinger. When was the last time your nervous system genuinely received the message that you were safe enough to stop watching, organising, anticipating and holding?

Watching a carer’s face drop when I ask this is often the key that unleashes tears and their dam of held emotions can be released. This is where I widen the lens on all that they have been holding.

Cancer caregiver stress is not simply about being busy. It is not a time management problem and it is certainly not evidence that you are failing to cope.

Caring for someone over a prolonged period can create chronic stress. Not attending to your stored emotions can generate physical depletion and a gradual loss of connection with yourself when there is no protected space to recover.

During a cancer experience the caring demand continues to arrive whilst your opportunity to replenish becomes smaller. Eventually, your body starts keeping score.

Your Nervous System Is Living the Cancer Experience Too

When cancer enters a family, it does not arrive politely and affect one person. Cancer is like a wrecking ball. It changes routines, conversations, finances, relationships, plans, priorities and the way you imagine the future. This is why the emotion of grief arrives early within a cancer experience. You fear to lose the life you expected to live.

There are a myriad of appointments, investigations, waiting rooms, treatment decisions. There are stretches of uncertainty where nobody can give you the answer you desperately want. And your nervous system does not distinguish between the threat happening directly to your body and the threat of potentially losing someone deeply important to you.

Your nervous system and brain simply detect uncertainty, fear, and unknown change. Subconsciously your body prepares you to respond.

Initially that can be extraordinarily useful. Stress chemistry helps you focusand become organised. That stress will assist your research and questions you ask the medical team. The carer will make what feels like thousands of calls. And they will catalogue all the details. The carer will get your person where they need to be.

The carer becomes the meerkat standing on watch. The problem is not that your survival response activates. That is exactly what it is designed to do. The difficulty comes when it never receives a reliable all clear.

Cancer has a particular shape because the threat is often repeated. There may be a suspicious scan, then waiting, then diagnosis, surgery, treatment, another scan, another specialist appointment and another round of waiting. Even when treatment finishes, there can be follow up appointments and the fear of recurrence.

Your body can become so accustomed to vigilance that being on alert starts to feel normal.

That is why some cancer caregivers tell me they cannot switch off even when nothing is immediately wrong. Their brain is still watching the fridge for the potential of a mountain lion to show up.

When Holding It Together Starts Costing You

There is an expectation placed upon cancer caregivers that I think we need to challenge at a societal level. These expectations are often unhealthy and create barriers for truly open and honest expression of what is being felt by a patient and their loved ones.

There are a number of broad sources of messaging that we face when entering a cancer experience which immediately corner people into a space of shame.

Let me explain. At a societal level we are supposed to:

• be grateful your person is receiving treatment;
• to stay positive;
• to be strong; and
• to understand that the carer is the one with cancer, so the impact to them is not as significant.

Fundamentally we all understand that. It’s a very superficial understanding and the generalised public messaging is clearly generated by someone who has never been personally touched by a cancer experience.

My take is this. Understanding a patient’s cancer experience does not magically remove your own human response to what and how it is impacting you.

A carer can adore someone and still feel exhausted by constantly supporting them. A carer can desperately want their loved one to recover and still occasionally want their old life back. An entire family can be grateful for treatment and hate what treatment has done to you all. Because you’re all impacted by treatment one way or another.

A carer can willingly care for someone and still feel angry, lonely, frightened, bored, resentful or completely over hearing about cancer. Two things can be true at the same time.

This is where compassion fatigue and cancer caregiver burnout can quietly develop. It may begin as tiredness, irritability or difficulty concentrating.

Perhaps your patience becomes thinner. You stop seeing friends because explaining everything takes too much energy. Your sleep changes. Your body feels permanently braced. You struggle to enjoy anything without feeling guilty because your person cannot enjoy life in the same way.

Your inner meerkat can only stay alert for so much and so long. Sometimes you become so practised at attending to everyone else’s needs that you genuinely stop knowing what you need.

That deserves your attention. Not because there is something wrong with you, but because prolonged survival based demand on your mind and body, without adequate recovery, eventually affects your emotional resilience and capacity to cope.

You cannot endlessly withdraw from a biological bank account without making deposits.

Looking After Yourself Is Not Abandoning The Patient

This is often the point where carers tell me they know they “should” practise self care. Their expressions are riddled with guilt and shame. I tend to challenge this language. I am not particularly interested in giving an exhausted cancer caregiver another list of things they should be doing. They already have enough jobs.

I am much more interested in helping the carer recognise that nervous system regulation and stress management are part of sustainable caregiving. Our wiring simply isn’t designed to be a full time receptionist or nurse on top of everything else you’re doing.

Simply put, this might mean protecting ten minutes in a carer’s day rather than promising themself an hour they never receive. It could mean eating an actual meal before you become shaky and depleted. It may mean stepping outside while somebody else sits with your person, asking a family member to manage the update messages or admitting that you cannot take another phone call tonight.

Sometimes nervous system regulation is very simple.

Put your feet on the floor. Take a deep breath, and notice the chair supporting your body. Look around the room rather than remaining trapped inside the frightening story your mind is projecting into next week.

Lengthen your exhale. Perhaps take a walk outside. Move your body and gently gaze around the room, this provides your brain a fresh reality to take in.

Sometimes the simplicity of allowing somebody else make dinner so that you can pause and catch your breath. Allow yourself to laugh without immediately correcting your happiness.

These actions do not change a cancer diagnosis. They change the amount of load your nervous system is carrying in that particular moment.

And that matters.

Asking for Help Is Part of the Work

Cancer has an extraordinary ability to expose our beliefs about receiving support. The reality I learnt is that when you allow others to help you, you are gifting them the opportunity to show you they love you.

I have met plenty of people who will do absolutely anything for the people they love and then become deeply uncomfortable when somebody offers to help them.

They minimise with statements that sound like:

“I’m fine.”

“Other people have it worse.”

“They’ve got enough going on.”

“I don’t want to be a burden.”

Meanwhile they are exhausted, frightened and surviving on adrenaline.

Asking for help does not mean you cannot cope. Sometimes it means you have recognised that coping alone is no longer the goal. There is a big difference.

Support can be practical. Ask someone to cook. Drive. Sit. Pick up prescriptions. Walk the dog. Take the children somewhere ordinary and fun. Honestly, people are often happy to undertake small tasks and help out.

Support can also be emotional.

Sometimes you need somebody who will let you say, “I’m scared,” without immediately trying to make you feel better. Sometimes you need ten minutes to speak honestly without protecting the person listening.

Sometimes you need professional support because the person you love cannot possibly hold your fear about their illness as well as their own.

Your needs matter inside this story too.

What Happens When the Cancer Treatment Ends?

This part often surprises people. There are expectations that your life will return to normal. There are expectations of relief which often doesn’t immediately arrive.

But recovery can also be extraordinarily unsettling for both the person who had treatment and their caregiver. For months, everyone has been focused on surviving the next thing. There has been structure. Appointments. Treatment dates. Medical teams. Tasks.

Then suddenly the frequency of medical contact changes and the world appears to expect life to return to normal. Your nervous system is likely to disagree.

You may remain hypervigilant to symptoms. Upcoming scans may create anxiety weeks beforehand. Your person may be struggling with their changed body, fatigue or fear of recurrence while you are privately wondering why neither of you feels relieved enough.

This does not mean recovery is failing. It may simply mean your body has not yet caught up with the change in circumstances. Safety often has to be experienced repeatedly before the nervous system trusts it. That takes time.

The Person Doing the Holding Needs Somewhere to Be Held

This is ultimately why I wrote Holding The Helper: Supporting the Cancer Caregiver.

The book is not about teaching you to become a better carer. Most carers I meet already know how to care. The problem is that they become so good at holding everyone else that they slowly disappear from their own story.

Holding The Helper follows the cancer caregiving experience from the uncertainty before diagnosis through diagnosis, treatment and recovery. We explore stress and the nervous system, big feelings, practical stress management, asking for help, conscious caregiving and the invisible weight carried by the people standing beside someone with cancer.

Because the helper requires resources too.

The helper needs language for what is happening.

The helper needs permission to have complicated feelings.

The helper needs ways to regulate their nervous system.

And sometimes the helper simply needs someone to finally ask:

“How are you?”

If you are supporting someone through cancer and recognise yourself in these words, Holding The Helper was written for you. Preorders are now open, with copies available from 18 October. Your purchase also gives you access to the accompanying therapeutic meditations, so you do not have to wait for the physical book to begin creating small spaces for yourself within the cancer experience.

You can learn more or preorder through https://www.karenhumphries.net.au/holding-the-helper/

Cancer may have made you a caregiver.

It does not require you to stop being a person.

Holding yourself while you hold someone you love is not taking attention away from them. It is recognising that there are two nervous systems, two emotional worlds and two human beings travelling through this experience.

Helpers deserve help too.

Your needs matter inside this story.