” To be present. Spend time together, do not be afraid. When the pain is excruciating, the face is emaciated and earthy, the body loose, continue to be there without fear. That’s what Marie-Caroline strove to do with her father throughout the fight against cancer until the last day.
When the disease strikes, it spares no one and the shock wave upsets the relatives in the first place. Relatives often lost in the face of impossible equations: how to accompany the loved one in his suffering, help him not to lose hope while not rocking him with illusions? To what extent can we bring some comfort, when should we fade, how to find the words that soothe? So many questions to which the answers vary, according to the pathologies, the prognoses and the personality of each one. A constant nonetheless, says Pierre Saltel, head of the psycho-oncology unit at the Léon Bérard Cancer Control Center in Lyon: “It is essential for patients to be involved. “
How to support and support a loved one with cancer?
“The support usually goes through very simple things”
A necessity that loved ones integrate “much better than one might think,” adds Pierre Saltel: “Given the difficulty of this support, it must be emphasized, this is often the best possible. This is despite the complexity of what is being asked of caregivers, he continues. “Namely, to be present emotionally, of course, but often also material. The treatments for cancer and the disease itself often deprive the sufferer of their autonomy , forcing them to ask for support that goes well beyond the shoulder to cry: trips to the hospital, help with toilet, follow-up care, paperwork … The list is long.
If there is no way to use, Pierre Saltel insists on one point: “The support usually passes by very simple things. “Encouragement, small daily gestures, such as a freshly made bed, a tea at the right time, a bouquet of flowers, laundry, dishes. These are innocuous tasks for those who are in good health but often insurmountable when one is overwhelmed by the side effects of a treatment or the pain generated by the disease. “I was lucky that logistical, professional and other aspects were not a problem and thanks to that, I was able to focus on my recovery, ” says Sophie, in remission of breast cancer.
How to support and support a loved one with cancer?
Do not force the patient to “keep up morale”
Another recommendation of the psychiatrist, “do not try to be too psychologizing, nor fall into the trap of wanting to cheer up at any price”. “The patient goes through periods of discouragement or depression, phases of intense fatigue, loss of appetite. It’s normal. Wanting at all costs that he has the morale, worry that he can not get out of bed or finish his plate is often doomed and frustrating for everyone. When you’re worried, it’s better to talk to the medical staff, who will know how to share things, rather than pass on their fear to the patient. Relatives are never illegitimate in their request for information from doctors. They know how important and difficult their role is and how the balance between doing too much or not enough is fragile. “It’s not because the sick person does not have the morale that they will inevitably fall or the cancer will progress. Often, patients are asked to be optimistic because it is more comfortable for those around them, less anxiety-provoking, “adds Pierre Saltel.
As for his own anxiety, if it is natural to tell the other, especially when it is a spouse who is affected, it is best to ensure do not weigh it on the patient, who often feels “guilty of what he inflicts on those around him,” Pierre Saltel observes. Hence the importance of having the opportunity yourself to confide in a third person, whether a friend or a professional. “My husband was incredibly helpful to me. He never showed me that he was worried, when he was, of course. I later learned from a friend whose husband is a cardiologist and my husband has often called during this period, “says Sophie.
Speak and listen, do not infantilize
Marie-Caroline recalls that she tried to “talk normally” to her father until the end. “The nurses spoke louder, articulating more. One day the stretcher-bearers were taking him for what was to be the last time at the hospital, they used that tone. I looked at my father and told them gently, “He’s not deaf, you know, he’s got cancer.” I looked at my dad so thin in his shroud again, he smiled at me and he laughed at his eyes. “Until the end it was my father,” says the young woman. I treated him with the same respect, the same respect as when he was well. One way not to let cancer take precedence over the very essence of the human being affected by the disease. A fundamental point for Hélène, a palliative care nurse for a dozen years: “as long as you’re not dead, you’re alive, even in the very last moments of your life. “
Also often mentioned by relatives, the importance of being attentive to needs and expectations. “When my father was ready, he told me he knew it was over. It was about three months before his death. I’m sure he wanted me to tell him that yes it was true, there was nothing left to do, it was over. Not to lie was obvious to me. Even if it’s awful to tell his father that he will actually die, “says Marie-Caroline.
Thibault, whose wife is currently experiencing a relapse of her breast cancer, holds the same speech: “I will never be the one who will tell her that she is doomed if unfortunately that day arrives. But I know she will want to know and that day, I will have to face the truth with her. Others, however, prefer to live in limbo, not knowing the prognosis or their life expectancy. We must then respect that. In short, I feel that accompanying a person with cancer is walking in his footsteps, at his own pace, never try to impose our tempo. Which is not always easy, far from it. “
Learn about the disease without being a substitute for doctors
It is more or less what suggests this guide for relatives of patients by the League against cancer: “The secret is first to let the sick person speak, speak. Do not rush to falsely reassure her, or conversely, let your own concern be felt. Ask questions that will allow him to put words on his emotions. So you will be able to better understand what she is experiencing, and you will react more appropriately. “
However, continue the specialists authors of the guide, “to be able to pursue a real dialogue throughout the disease, you will need to acquire a minimum of technical concepts about the condition in question, to familiarize yourself with a certain vocabulary: what exactly does the diagnosis mean, but also what are the various examinations and the treatments prescribed? “
Be careful not to become a doctor or nurse. If understanding the ins and outs of what is happening is essential, it is better for everyone to keep their role. Sandrine, whose mother died of cancer six years ago, says: “A week before her death, I realized that the memory I wanted to take away from my mother was not me. to change her diaper, and I just stopped doing it, leaving that to the caregivers and helpers taking turns at home. A letting go that allowed him to focus on the essentials: “Of these last moments, I remember especially the tenderness of the moments spent together, of the conscience that we had, my mother, my brother and sister and me that it was not going to last and the urgency to take advantage of it. “Every evening we found ourselves dining together, as in our teenage years. I remember that we opened good bottles to make these painful moments pass, and that they were transformed into tender moments, in the end. “
Keep room for joy and life
Last but not least, be careful not to let the disease occupy the entire living space, recommend the authors of the guide of the League against cancer: “Give a large place to projects, dreams, family life and to social life. “It’s important to have fun, take breaks. Sometimes, humor and laughter invite each other in the most painful situations. Sandrine remembers laughing “ugly situations in the hospital” and Sophie remembers the day her husband sheared his hair falling by handles: “He managed to do it with humor and lightness, it was precious. “
Caroline for her part “tried to accompany as best as possible” one of her closest friends with breast cancer. “After the breast was removed, I called him every day to the hospital, unable to cross France to be at his bedside. We talked about everything and anything, sometimes a few minutes, sometimes more. One day, we thought that when it was over, I would go with him to buy Louboutin in Paris – it’s a crazy shoe. I thought it was more a joke than anything else, but a few months later, when she was officially in remission, she gave me an appointment in the shop of the rue du Faubourg Saint Honore. She had not only forgotten, but I understood that from all I had tried to do to help her, it was probably the most comforting thing: the prospect of an afterlife. futile afternoon in a shoe store. I have never been so excited to buy a pair of shoes and I think I can say it either. She and I will never forget this moment when life has regained its rights. “