Carers of cancer patients, invisible yet so essential

Loved ones caring for someone with cancer bear a heavy psychological burden, which is often not expressed. While they provide valuable assistance, they may also need assistance. Experts offer advice to better understand this ordeal.

5 million missing people. 5 million people in France who support a loved one through the ordeal of cancer, the disease that is the subject of International Day this Sunday, February 4. The Foundation for Cancer Research (ARC Foundation) and 80% of them state that one in 10 French people have a caregiver’s name without knowing it.

“They don’t recognize themselves as such, they don’t realize what they bring,” underlines Clemens Bouffe, assistant coordinator of the Leon Berard Cancer Treatment Center in Lyon, contacted by BFMTV.com.

Behind this name of caregiver hides practically the same daily life for these 5 million French people. Moral and emotional support for a sick loved one, support for domestic and administrative tasks, support in the care process, etc.

And for about ten years, the provision of medical care – such as preparing drugs or changing dressings – has taken up more and more space, tells us Sandra Dosen, director of the Cancer Contribution Association, which promotes the involvement of patients and their loved ones. Those who are improving health practices.

Due to an increase in “ambulatory shifts” and care provided at home, “there is a very strong downward trend in time spent with caregivers as time spent in hospital decreases,” she explains. “As a result, patients are increasingly asking their loved ones for support.”

“The Long Distance Race”

This support, considered essential by 99% of patients, can weigh on a caregiver’s shoulders. And this, the upheaval caused by the announcement of the illness. For both patient and loved one, anxiety dominates.

“From there, this collective ordeal should be understood as a long-distance race, an obstacle course in which caregivers must conserve their energy”, image Karen Krauter, a clinical psychologist specializing in oncology with BFMTV.com.

In the post-diagnosis period, experts emphasize the importance of having a loved one with the patient, if they want, for a second ear at their medical appointment and to help them understand the falling information collectively.

“My friend had chemo and I was telling myself I was good for something, trying to repeat what the doctor might have said,” Jean testified to the National Cancer Institute.

If they are a valuable help to patients, caregivers – on average 68% women and 52 years old, according to a barometer conducted by Cancer Contribution – may also need support. They can go to a health institution that has dedicated spaces, ask to see a psychologist, or even go to organizations like La Ligue Contre Le Cancer that offer support groups.

“Even if there are more and more initiatives and significant cultural change, very few caregivers are integrated into the care pathway. Doctors and caregivers are not necessarily informed about existing help offers”, reports Sandra Deussen.

From 2019, carers can also request special leave and financial compensation from the family allowance fund. Rights with complex terms of attribution that most people are unfamiliar with.

“From the beginning, you need to get help,” advises psychologist Karen Krauter. And above all “take time to hold yourself”.

Free the floor

Seeing friends, feeling fulfilled at work, or practicing physical activity can be a decompression chamber. However, according to the ARC Foundation, 46% of caregivers report an impact on their leisure activities, their social life, 38% on their family life and 38% on their work.

“Carers take a lot on themselves, they don’t dare to complain, so it’s important that they get their words out, their feelings. Otherwise, they risk exploding like a pressure cooker,” says Clemens Bouffe.

Although it mainly depends on the relationship with the patient, talking to them about their feelings can be positive. “This can force the patient, who hides what he feels, to open up,” continues Leon Berard, an expert at the center that offers comprehensive support to people close to cancer.

To which Karen Krauter agrees: “You’re not expected to be a machine or a professional.”

Communication, key

Communication is a key to coping with the various stages of the disease. An onco-psychologist with 20 years of hospital experience working with cancer patients offers some advice on this topic.

“A patient will have different needs throughout their journey. Sometimes they will need to recognize their weaknesses, sometimes on the contrary, they will not be considered a sick person,” she notes.

From there, the caregiver should try to adapt by asking clearly what the sick person needs. “Which do you prefer: helping or leaving you alone? Would you rather I call or text you after your chemo?”

Asking “Are you okay” over and over is also not recommended. “Show your attention, your sympathy through more subtle gestures, such as gestures of affection” is better.

Similarly, excessive optimism is not always well received. “You should not try to completely boost the morale of a patient who has the impression that you are out of touch with his concerns. It is better to remain calm, to listen, to remain neutral.”

It’s better to avoid the “you’ll get through this” or “you’ve got to be strong” that can feel like an injunction and replace it with “I’m here” or even a simple “how’s it going?”

According to a barometer conducted by Cancer Contribution, 66% of caregivers would advise a future caregiver to be careful not to let their relationship with their loved one deteriorate.

“With mental load – considered the greatest difficulty – fatigue, stress, tension can easily be created,” analyzes the director of the association Sandra Dusen.

Pay attention to your own health

All this gymnastics and energy devoted to helping the patient can affect the caregiver’s health, both mental and physical. They are therefore more likely than the general population to be affected by chronic diseases such as sleep disorders, back pain, osteoarthritis, hypertension, heart attacks, strokes or even symptoms of depression. More than 3 in 4 people say they are stressed and tired.

“It is important to continue to monitor your physical health, consult the treating doctor regularly, carry out your check-ups. Caregivers have a tendency to focus on the needs of the patient and forget themselves,” warns Clemens Bouff of Lyon. Center Leon Berard.

A scientifically validated tool also makes it possible to assess a person’s state of fatigue and level of burden: the Zarit grid, presented in the form of a questionnaire.

“Caregivers are very resilient,” notes the barometer, based on which 49% believe their role has a significant impact on their personal lives, and only 10% a very significant impact.

She adds: “We need to be able to find people in hospital services who have to travel harder to help.” This can be particularly the case with children or siblings, who are particularly vulnerable and often forgetful.

In general, to reduce burden, it is important for loved ones to accept that they cannot always help or understand the patient’s feelings. “Being there is all you can do,” says Karen Kreuter. “We must be able to admit that there are things we do not understand but we can hear.”

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