Family of an ICU Patient: The Uncertainty of Waiting at the Door

Being the family of an ICU patient means waiting at the door, dreading the phone, limited visits and uncertainty. Ways to support yourself and your family.

Plastic chairs in the corridor, tired faces that look up every time the automatic door opens, flasks of tea passed from hand to hand and a waiting room where the hours refuse to pass… Waiting outside the door of the intensive care unit is one of the longest stretches of time a person can live through. Someone you love is inside; but you can only see them during a short visiting time, perhaps for just a few minutes. For the rest of the time, the only thing you can do is wait, both hoping for and dreading the phone ringing. Being the family of an ICU patient is an experience in which body and mind are on alert at the same time and control has been taken almost entirely out of your hands. In this article I look at what you may go through during this uncertain wait, how you can keep yourself going and how you and your family can make this process more bearable.

What Does the Family of an ICU Patient Go Through?

A loved one being admitted to intensive care usually happens unexpectedly: an accident, a sudden heart attack, a stroke, a severe infection or after a major operation. Yesterday you were living an ordinary day; today you find yourself in a hospital corridor. This sudden transition leads to a shock reaction in many family members.

Feelings commonly experienced during this time include:

• Anxiety about uncertainty. The question "What's going to happen?" keeps circling in your mind. Doctors often cannot give a clear prediction, because the course of things in intensive care can change within hours. This uncertainty can feel even more exhausting than definite bad news.
• Helplessness. You cannot see what is happening inside, intervene or help. The fact that the only thing you can do is wait creates a deep sense of powerlessness.
• Fear of the phone. Every time the phone vibrates, your heart races. When an unknown number calls, you may catch your breath.
• Guilt. Thoughts such as "If only I'd brought them to hospital sooner" or "If only I hadn't left them alone that day" can lead you to look back and load what happened onto yourself.
• Physical exhaustion. Sleepless nights, skipped meals, sitting for hours in the corridor; the body stays on alert too.
• Emotional numbness. Some family members are surprised to notice that they cannot cry or feel nothing at all. This too is a natural reaction to shock. Feelings often arrive when the danger recedes a little or when the process is over.

Limited Visits and the Weight of What You See

In many hospitals in Turkey, intensive care visits are limited to set times and short durations because of the risk of infection and the need for continuity of care. These rules are there to protect the patient; but for family members they can strengthen the feeling "I'm leaving them alone".

The moment of the visit carries its own difficulty. Seeing a loved one surrounded by machines, wires, a ventilator and monitor sounds, and not awake because of sedative medication, can shake you deeply. When you see the person you love in this state, it is very natural for your knees to tremble, for you to cry or to want to leave the room quickly.

To make the visit a little more bearable:

• Asking the nurse or doctor before going in what you will see can reduce the shock of the sight.
• It is good to ask the team whether it is appropriate to hold your loved one's hand or touch them.
• We cannot know for certain whether a patient who is unconscious or sedated can hear you; but if the team allows it, speaking to them in a calm voice, saying their name and passing on the family's love can be meaningful both for them and for you.
• Rather than sharing the visiting time among a large family, having one or two of the patient's closest people go in usually creates a calmer atmosphere.

Getting and Understanding Information as the Family of an ICU Patient

In intensive care, doctors usually update the family at set times. The medical terms, values and possibilities heard in these short conversations can easily become hard to understand for an anxious mind. Families coming out of the meeting and asking each other "What did they say?" is very common.

• Appoint a spokesperson. Having one or two family members handle communication with the doctor both makes the team's work easier and prevents information from getting mixed up.
• Write your questions down in advance. Noting questions in a notebook, such as "What has changed today?", "What are we expecting in the coming days?" and "Is there anything we can do?", helps.
• Say when you don't understand. It is your right to say, "Could you explain that more simply?"
• Take notes on what you hear. Anxiety weakens memory. Making brief notes straight after the conversation allows you to pass on accurate information to other family members.

Sometimes the team may want to have difficult conversations with the family about the direction of treatment. Family members having different views in these meetings can create tension between siblings. At such moments, putting at the centre the wishes and values the patient expressed in the past, and the question "What would they want?", can bring the family onto common ground. It is also your right to ask the team for a calm setting and enough time for such conversations.

For all questions about the medical course, treatment options and decisions, turn only to the intensive care team. Stories heard from other families in the corridor, or information online, often do not fit your loved one's situation and can needlessly increase anxiety.

Keeping Going in the Waiting Room

The family of an ICU patient often waits for days, sometimes weeks. Looking after yourself during this time is not selfishness; it is what makes it possible to sustain the process.

Share the waiting

Not everyone needs to be at the hospital at the same time. Setting up a rota among family members allows one person to rest at home while another waits at the hospital. Going home to sleep for a few hours, after making sure the number the hospital can reach you on is switched on, does not mean abandoning your loved one.

Don't forget your body

Drinking water, eating something regularly, taking short walks and sleeping whenever you get the chance are necessary for you to be able to carry your anxiety. A hungry, sleepless body makes anxiety even bigger.

Try to manage your mind

Uncertainty constantly drags the mind into "What if…?" scenarios. It is not always possible to stop these scenarios; but noticing them and turning your attention to something else for a while (a walk, a short phone call with a friend, a breathing exercise) can help. You can find suggestions for coping with thoughts that keep going round in circles in the article on overthinking.

Keep a small diary

Some families say it helps to write a few lines every day during the intensive care period: what the doctor said that day, a small change you noticed during the visit, a phone call that did you good, the feelings you had. These notes both stop the days from blurring into one another and are a way of moving intense feelings from your mind onto paper. If your loved one recovers, they may wonder what happened during the days they were sedated or unconscious; this diary can also help fill the gaps in their memory.

Manage the crowd

In Turkey, a relative going into intensive care often means the hospital corridor filling up with family. Although this support is valuable, constantly answering the same questions and managing everyone's emotions can exhaust the closest family members. Having one person give relatives short, regular updates helps to reduce the crowd in the corridor.

What to Say and What Not to Say

Fictional examples for relatives and friends who want to support the family of an ICU patient:

Sentences it may be better to avoid:

• "Not many people come out of intensive care; prepare yourself." (A made-up prediction wounds hope and heightens anxiety at the same time.)
• "Don't trust the doctors; get them transferred to another hospital." (It creates pressure to make decisions and causes confusion.)
• "Why are you in such a state? You need to be strong." (It forces them to suppress their feelings.)
• "My uncle was in intensive care too, and this is what happened…" (Other people's stories can increase anxiety.)

Sentences that may support:

• "Go home for a while; I'll wait here tonight and call you straight away if anything happens."
• "I've brought you some food. Eat something, even a few mouthfuls."
• "Whatever you're feeling, you have every right to feel it."
• "If you want to talk, I'm here; if you don't, I'll sit quietly beside you."

Waiting at the door is not doing nothing; it is the quietest way of telling the person you love, "I'm here."

By Age: Children, Teenagers and Older Relatives

Children at home

In a family with a loved one in intensive care, children sense their parents' absence and the tension at home. It is important to give young children a short, honest explanation ("Grandad is very poorly, and the doctors are looking after him in a special unit") and to keep their daily routines going as far as possible. Whether a child should be taken to visit the intensive care unit should be considered according to hospital rules, the child's age and their wishes; if necessary, you can ask the team for advice on this. The child drawing a picture for the patient or recording a message can be a safer way of including them in the process.

Teenagers

Teenagers sometimes want to know every detail of what is happening, and sometimes want to stay completely away. It is necessary to give honest answers to their questions, give them a choice about whether to come to the hospital and support them in keeping up with their responsibilities at school. Be careful not to load them with excessive responsibilities, such as "You're grown up now; you run the house."

Older relatives

If the patient in intensive care has an older spouse or parent, that person's wait can be especially hard. Spending long hours in the corridor is physically tiring, and the fear of bad news deeply affects an older heart. Rather than keeping the older relative completely away from information, informing them calmly and to the extent they can bear is a way of showing them respect.

If the patient is a child, the parents' wait is particularly heavy; during this time it is important for mother and father to support each other and for siblings not to be neglected.

When Should You Seek Professional Support?

During the intensive care period, anxiety, sleeplessness, crying and intense tiredness are expected reactions. However, support from a mental health professional may be helpful in the following situations:

• Sleep and appetite being disrupted for weeks, and being unable to manage daily tasks
• Intense bouts of anxiety resembling panic attacks
• Memories, images and sounds from the hospital constantly coming to mind
• Anxiety, guilt and a sense of being on alert continuing after the patient is discharged or the process has ended

I have covered the emotional effects that both the patient and the family may experience after the patient leaves intensive care in the article on psychology after intensive care. If you notice hopelessness, a wish to die or thoughts of self-harm in yourself or a family member, do not carry this alone; in an emergency call 112 (emergency services) or go to the nearest emergency department.

How Is the Intensive Care Wait Addressed in Therapy?

Psychological support can help you carry the uncertainty, even in the middle of the intensive care period. In individual therapy, feelings of anxiety, guilt and helplessness can be addressed, and skills for living with uncertainty can be developed. A cognitive behavioural approach offers a useful framework for noticing catastrophic scenarios, questioning thoughts such as "It's all my fault" and finding ways to calm both body and mind.

After the process has ended, whatever the outcome, working through the memories of the hospital days can also be important. If the patient has recovered, the family may be slow to notice their own exhaustion because of the expectation that "everything is fine now"; if a loss has occurred, the grieving process can be supported. For family members who cannot leave the hospital, or who cannot attend face-to-face sessions because of the intense pace, sessions can also be held online.

Frequently Asked Questions

Can a patient in intensive care hear me?

We cannot know this for certain for every patient; the level of consciousness varies from patient to patient and from day to day. If the team allows it, speaking to them in a calm voice, saying their name and touching them can be meaningful both for them and for you.

The doctors aren't giving clear information. Is that a bad sign?

Not always. Because the course in intensive care can change quickly, doctors often avoid giving definite predictions. Asking about points you don't understand, and getting information with questions such as "What will we be watching for in the coming days?", can make the uncertainty a little easier to understand.

I panic every time the phone rings. What can I do?

This is a very common reaction. Taking a breath in and out when the phone rings, choosing one person to answer calls, or setting a special ringtone for calls from the hospital can reduce the panic caused by other calls.

I feel guilty if I'm not waiting at the hospital all the time. Is that normal?

Yes, very normal. However, waiting for long periods without rest wears out your body and mind. Taking turns to wait, and making sure the hospital can reach you, allows you to support your loved one for longer.

• #intensive care
• #family caregiver
• #uncertainty
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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