Caregiver Burnout Is Real: How to Look After Yourself While Supporting Someone Else

 

Beata Bolek

EURYDYKI Patient Association, Poland

 

“Difficult experiences and an awareness of life’s finitude compel us to reflect on how we live our lives. And so we search for inner strength—the ability to remain calm when the world around us loses its balance, and to rise again, discovering within ourselves an acceptance of our own limitations and the perseverance to carry on.” — Maryla Boćkowska

 

The Polish word pomoc, meaning “help,” carries a deeply important message. Within it is the word moc—strength or power. It suggests a journey toward strength. Understanding the depth of this meaning creates an opportunity to build a healthy relationship between a person who is ill and the person caring for them.

However, when either side focuses primarily on themselves, help can turn into coercion. In trying to protect someone we love, instead of supporting them, we may impose our own perspective—our own idea of how illness should be experienced. This applies to both sides, because illness affects not only the patient. In a sense, the loved one accompanying them through it becomes ill alongside them.

The situation is particularly difficult for someone who finds themselves in a dual role—as a caregiver, but also as a person undergoing treatment themselves. What should they focus on—or perhaps more importantly, whom should they focus on?

The Enormous Dilemma of the Dual Role

This is an enormous dilemma and undoubtedly an extremely difficult one to face. As a cancer patient whose illness was in remission, I then had to endure another traumatic experience: my husband’s cancer. It turned out that my own experiences did not always help. Sometimes, they actually got in the way.

From my husband’s perspective, I was far too overprotective. I transferred my own experiences of treatment and chemotherapy onto him, forgetting that every patient may experience illness differently. I tried to organize his recovery time and impose a particular diet and lifestyle on him.

It was an extremely difficult period. Today, I am receiving psychological support for, among other things, my husband’s death from cancer, the recurrence of my own illness, and the subsequent surgeries, chemotherapy, and radiotherapy. I am learning that we cannot live another person’s life for them or decide what is best for them. More than three years ago, however, I did not yet understand this. I even believed that sacrificing myself was the best possible form of help.

There were also moments—and they were not at all uncommon—when I felt helpless and, in some sense, angry at the illness and, as a result, angry with myself. This may seem strange to some people, but that is how it was. I felt anger that probably came from my lack of control, from my inability to restore the person I loved to health, and from the paralyzing fear that I would soon lose him. I felt as though my own life no longer existed.

Understanding the Burden of Caregiving

Looking back, I believe that it is much easier to be ill oneself than to care for someone who is ill. As a patient, I know what I am feeling. I recognize my symptoms and know what helps me. But when caring for another person—particularly someone at a very advanced stage of illness, who is no longer independent and has difficulty expressing their needs—many things have to be guessed. You must act intuitively without knowing whether this is really the kind of help they want.

The most difficult experience is accompanying someone who no longer wants to eat, drink, or take medication—someone who may wish to leave, to bring their suffering to an end. I believe that this is when we must learn an exceptional kind of humility: how to accompany the person who is ill, how simply to be beside them, how to listen to their needs, and how to accept them.

Now, while undergoing therapy, I believe that to be an effective caregiver, one must learn to separate one’s own assumptions about the needs of the person receiving care from their actual needs.

The Essential Rule: Caregivers Must Care for Themselves

Something else is also extremely important, although I only came to understand it during therapy: no caregiver can fulfill their role well unless they first take care of themselves, regardless of how inexhaustible they believe their reserves of strength to be. It is essential for caregivers to reach out for different forms of help.

From my own perspective, I believe that things would have been easier for both of us if, during my husband’s illness, I had sought help from a psychologist experienced in working with people affected by trauma.

The truth is that when my husband was already gravely ill and I knew that we had only a few weeks left together, I was completely unable to think about myself. I stayed beside him twenty-four hours a day. I felt guilty for needing even a little sleep. I was afraid to go to the store, let alone meet friends, even briefly, because I did not want to lose a single moment of the time we still had together.

I regarded the time of his dying as priceless, almost sacred, while at the same time finding it incomprehensible and terrifying.

Alongside psychological care, pharmacological support—always in consultation with a doctor, such as a psychiatrist or primary care physician—can also be extremely important. As a caregiver, I had enormous difficulty accepting this kind of support. I was afraid that medication would dull my emotions. Above all, I feared that I would not be fully conscious and present during every smallest moment of the life we still shared.

After my husband died, I was afraid that the medication would numb me so much that I would forget him more quickly—his scent, for example—or that I would become somehow different, unfamiliar even to myself.

Today, I know that my thinking was mistaken. When I speak to other caregivers who receive pharmacological support, I can see that it is easier for them to cope with the enormity of their suffering and helplessness. Perhaps such support can also protect their bodies and minds, at least to some degree, from the consequences of the immense stress they are experiencing.

I was unable to do that. Perhaps that is why I became ill again.

Returning to Life and Finding Purpose

But now, thanks to my family, my friends, the wonderful doctor who is treating me, and medication that improves my mood, I also have a life beyond illness—a life in which I try to participate actively, enjoy every moment I have been given, and remain open to meeting new people.

My husband was not given that opportunity. I was. I do not want to waste it.

For several months, I have been actively volunteering with the Eurydyki Association, visiting patients in the gynecological oncology ward. There, I can support women living with cancer. We can share the joy of positive outcomes from the extremely difficult treatments they undergo, but I can also accompany them during moments when their bodies do not respond to treatment, despite chemotherapy, radiotherapy, and the enormous efforts of everyone around them.

I see profound meaning in what I do, because by helping others, I also help myself.

At this point, I would like to mention what, from my perspective as both someone accompanying another person through illness and someone experiencing illness herself, is the most important factor: the ability to accept the support offered by loved ones and family.

I do not know what life during and after my husband’s illness would have looked like without our children. They gave meaning to everything. They helped me slowly rise and return to life. I could not allow them to experience yet another loss.

This remains true today. Thanks to my children, my family, my beloved neighbors, and my friends, I now live not only for them, but above all for myself.

Not everyone has children, and children are not a source of support for everyone. Enormous help can also come from loved ones who simply remain beside us—people who do not focus on trying to cheer us up or offering well-meaning advice, but who accompany us in silence, bring us a meal, cry with us, or swear at fate alongside us.

For several years, I have been a member of the Eurydyki Association and the Qmocy Association. They are support groups for women undergoing treatment or living beyond illness, as well as for their loved ones. The women who belong to these associations possess an enormous wealth of knowledge, based not only on medical information but, above all, on personal experience.

They can give others strength in moments of doubt and provide a sense of safety. They can help people search for solutions when the healthcare system fails them—and even help them believe in miracles.

Thanks to all the people close to me—my family, my friends, fellow patients, and my psychotherapist—I am changing the way I think, the way I see the world, and the way I respond to what life brings.

I am learning to follow the words of an exceptional person—a poet and teacher who is my role model in facing life’s hardships—Maryla Boćkowska:

“I do not search for a road that brings happiness. I try to find happiness on the road I am already walking…”