When a Loved One is in the ICU
- Visit your family member
- What can I do to help?
- Seek support
- Ask questions
- Keep a journal
- Other things to expect
Visit Your Family Member
Most ICUs encourage visiting patients with few restrictions. You may feel comfortable doing this, or you may feel frightened or unsure of what to do. The ICU health care team can help you feel more comfortable.
When a patient is first admitted to an ICU, it is normal for you to feel helpless, and desperate to know everything you can about their chances of recovery. However, the patient will need time to let their body rest and get over the shock of becoming so ill. Sometimes they will be given strong pain-killing drugs or sedatives to help the healing process begin. If you have questions about what is being done, ask the staff in the ICU. They will answer your questions as well as they can, but they will not want to give you false hope. The staff will be happy to explain what they are doing and they will be able to update you as time goes on.
People often find it helpful to sit with the patient, hold their hand, talk or read to them, or just be with them. Patients often feel comforted by hearing a familiar voice and sensing your physical presence. If you are uncomfortable or unsure about whether to touch your family member or friend, ask the nurse. If you are unsure how long to stay, the ICU nurse can help you decide. Families might want to rotate family members and friends visiting at any given time, allowing the others a chance to rest.
What can I do to help?
Days may go by with no change in the patientʼs condition. There may be nothing for you to do but sit by their bedside and wait. Nurses will often talk through what they are doing even I the patient is unconscious. This is because, even though they are heavily sedated, the patient may be aware of being touched, but they are unlikely to remember things as clearly as they would when fully conscious.
Helping the patient: The nurses may ask you to bring in some of the patientʼs personal belongings to help them recover, such as their favourite perfume or music. Talking to your relative or friend may also help. Keeping up a one-sided conversation can be difficult, but talking about shared experiences of holidays and good times can make you feel better too. You could also try reading a newspaper, magazine or book to them.
Even if the patient is conscious, you may find it hard to communicate with them. If they canʼt speak, they may be able to write, or spell out words by pointing to some letters, numbers and common words you have written on a piece of paper.
Helping the staff: Some relatives find it helpful to be more involved in caring for the patient when theyʼre recovering. You may be able to help by doing things such as brushing their teeth or massaging or moisturising their hands and feet. This will depend on how ill the patient is, and wonʼt always be possible but if you want to help in this way, ask the staff.
You can help the intensive care staff by choosing a family member or friend to be the main contact. Staff can tell the main contact how the patient is doing and they can pass on the information to other family members. This will save time for staff and relatives.
Preventing infection: Patients who are critically ill may have difficulty fighting infections and, because of how ill they are to begin with, this can be very serious. The staff will do all they can to make sure the patient is protected. You can help too by washing your hands and using the anti-bacterial creams, gels or sprays youʼll see around the unit before you go near or touch the patient. You should also ask other visitors to do the same.
Having a family member in the ICU can be a scary experience, full of uncertainty and anxiety. Families and friends should give each other time and a safe space for expressing emotions. The ICU team can let you know if there is a private quiet room available, if you need privacy. Remember you are not in this alone; there are many people who want to help. Whether it’s a close friend or family member, social worker, spiritual care advisor, doctor, nurse, or volunteer, there are people you can talk to. Ask a member of the health care team if you would like to speak to one of these people. You may find it helpful to pray, cry, or reflect on the life of your family member together.
Most people become anxious when they feel overwhelmed or unsure. Write down your questions or thoughts so that you remember them when the healthcare team meets with you. There are no wrong questions. We know that stress makes it harder for families to understand and remember new information. It is okay to ask more questions or repeat questions if you are still unsure of the answers. We want to help you to understand what is happening while your family member is in ICU.
Below are examples of questions you may ask the health care team in ICU. These are meant to be examples to help you start conversations about their care and decision making.
To gain information on the current treatment:
- What treatments and other care is he/she receiving?
- Can I call to find out how he/she is doing?
- Will I be informed regularly of changes and, if so, how?
To prepare for the future:
- Will he/she get better? What are the chances that he/she recovers?
- How long will he/she stay in the ICU?
- Will he/she have any after-effects?
- If you are worried your family member is not going to recover and you do not want to see them suffer any longer, you may ask, “Is it time to let go?”
- Is there anything I can do to make him/her more comfortable?
- In a decision-making situation, what is expected of me?
Be prepared to tell the Doctors what your family member normally does and what some of their ‘highly valued activities’ were, such as maintaining their physical independence, and ask whether they will be able to return to this level of activity.
Please note that the Doctors may not be able to answer these questions accurately. There is insufficient scientific knowledge to inform doctors how to precisely answer these kinds of questions. However, they may be able to provide a range of possible outcomes, such as a ‘best-case scenario’, a ‘worst-case scenario’, and a ‘best guess scenario.’
To learn what you can do:
Keep A Journal
Keeping a journal of key events and experiences will be helpful to you and your family member. When patients wake up after their critical illness, many of them have no memory of what happened in the ICU. Many patients find it very helpful to review these events that occurred during the ICU stay so a journal will be helpful in remembering what happened. It also may be helpful to you to process these events and make sense of what is happening.
Other things to expect
- There may be times when staff ask you to leave the patientʼs bedside. This is because some of the necessary medical procedures are not pleasant and may upset you. It also gives the staff room to do their job.If the patient is ventilated (on a breathing machine), the nurses have to regularly clear the chest of mucus and fluid. They do this by putting a thinner tube into the breathing tube to suck up the mucus. This is quite noisy and may cause the patient to cough or retch.
- The fluids given to the patient to keep them hydrated may make them look bloated and swollen. This is normal and will improve as the patient gets better.
- Some of the machines that the patient is connected to have alarms that may sound to let staff know that something needs doing, for example if a drip needs to be changed. Usually, there is nothing to worry about – the staff will closely watch the patient at all times.
- Sometimes, the patient may behave out of character. This may be because of their illness or medication. They may be agitated, confused, scared or paranoid.
- Paranoia is a form of anxiety or fear that can make you believe people are plotting against you or trying to hurt you. They may also have hallucinations (see things that arenʼt really there) and nightmares that seem very real to them. Patients sometimes believe the staff are trying to hurt them. This can be extremely distressing for you and the patient but it will improve as they get better and begin to recover.
- If the patient in the ICU has been given sedatives, the sedatives will be gradually reduced as the patient gets better. This process is called weaning. Depending on how ill they were, the drugs they needed and how long they were sedated for, the weaning process can take hours or it can take days. During the weaning process, the patient will be drowsy and confused, particularly in the early stages, but itʼs a necessary step and it means theyʼre getting better.