Communication
Make a connection | First response | Contact | Binary communication
Make a connection
The summary below guides you through the first steps of establishing contact, creating a connection towards communication.
Choose appealing options and get to it, good luck!
Nurses and Doctors
Always be kind with nurses and doctors, they are the ones who nurture and help the person. Ask them if you can be of help to them.
Source of Power
If the person is in an Intensive Care Unit, do feel reassured by all of the medical equipment surrounding him that probably has already been life-saving. Don't be afraid or worried by all of the tubes, wires, monitors, beeps, buzzers and other sound signals. Know that all is present to support the person. Consider all the equipment as a source of power for the comatose person’s body.
Pictures
Bring some pictures (photos) from the person, taken before he was in coma. Display some nice and good pictures in his room and show them to other people. Ask other people to have positive thoughts thinking at the person the way he is pictured on those images.
Cuddly Toy
If you possess a soft toy, something this person is or was used to sleeping next to, put this next to him, even when this person is an adult, and the toy has been stuffed away in some forgotten corner for years. If this toy has a name, pronounce it while telling the toy is with him, also showing this by touching a hand or cheek with it.
Comments Book
Place a “Comments Book” at the patient’s bedside, encouraging care givers and other family members to comment about any changes or shifts observed when visiting the patient. This might also be of benefit for the comatose person to read back when he is woken up from coma.
Smell
Use the same soap and perfume so they recognize you, even if they can’t open their eyes.
Peace and quiet
Try to be at peace inside yourself. If you feel angry or upset, the comatose person won’t feel encouraged to come to the surface.
Talk
Speak in a normal way, with a normal voice – you don’t have to shout or whisper. Make short sentences. Never talk about the person in the coma to others at the bedside supposing that he cannot hear what you are saying.
Read
Read a newspaper, magazine or a book for him. Also read a book from his childhood
Music
Sing or play his favourite music, also music from childhood. Invite someone to come by, and play his/her favourite instrument. There might perhaps be an acquaintance, a professional, or a musical teacher to contribute. This does not need to be a full length concert, keep it briefly. Pick a few songs the comatose person likes, and repeat those a couple of times.
Video
Bring a portable DVD-player or a laptop, and play short films, video's or TV-shows the person used to watch, also from his/her childhood. Don't feel held back even though this person's eyes are closed, he will be able to hear familiar sounds, voices, and music.
Clothing & Shoes
Bring clothes of the person, have him feel the fabrics, don't vacillate to dress the person in familiar clothes, like socks, a shirt, or other outerwear. If this appears to be hard because of the tubes and other medical connections, one can choose to cut open the shirt on the back-side, if necessary also the sleeves. to make it somewhat wearable. You can also put his often cherished shoes on, even though the person can't see this. It will be a soothing, domestic feeling.
Sense of taste and smell
Prepare a favourite meal with a distinct scent or taste, and take this to the person who is in a coma, and try to give a taste or smell (by putting some of it on a small piece of fabric for example, keeping this under the person's nose) and ask the nurses if it's alright to bring the familiar taste to his/her mouth by putting some of it on the tongue, with a cotton swab for example. When you are not allowed to, know that the scent of it can at least give the comatose person an association with taste.
Telling
Touch the person, hold his/her hand or wrist and recount the things you did today, what happened at home. Do engage the person with every day’s life and talk about daily events.
Also, do talk about good memories from the past (a holiday, special events, school time), talk about people he knows of which you know are appreciated. Know, that the person in a coma listens eagerly, even though he is not (yet) able to respond. Remember the importance of touch, hold his/her hand when you talk.
Massage
If there is no objection from the medical staff you can give a massage of the arms, legs, hands and don’t forget the feet. It is also possible to massage other parts of the body but it’s better to do this in consultation with the medical staff.
Touch
If possible, grab his hand and have the comatose person touch your skin, hair, beard, clothing and anything else that can be familiar, in a way you both used to. There might also be objects with a familiar feel.
Family & Friends
Do involve family, friends, acquaintances and helping hands in this situation, ask for their support, accept their help. Ask as many as possible people for positive support. Create an internet blog or use your FaceBook (or any other online community) page to keep your acquaintances up to date with all developments, and involve them. They will be of great support, and can also help create a positive environment around the comatose person. By using the internet to show improvement to others, you prevent having to deal with all of these people by phone or email. When all of this emailing and calling starts getting too much for you, be honest about it, ask friends and other interested parties to follow your online updates. There are a lot of free blogs and social media that are easy to retain.
Reaction on a person
Try to discover if there is someone who triggers a reaction to the person in a coma, and involve this someone in establishing contact. Don't be angry or disappointed if this person isn't you.
S-Strategy
A person likely to wake slowly from coma has, apart from your own efforts, needs what is called 'the S-Strategy':
° Structure his day
° Silence
° Sleep
° Stimulation: in short bursts of time, slow and steadily raised.
° Socialisation: slow and steadily raised. Not too many people and not all at once.
Take good care of yourself!
Apart from all of your active effort, do realise that a comatose person also needs a lot of rest. Also keep this mind when signs of waking up start showing. Don't be in the hospital day and night, get out now and then. Take good care of yourself, eat healthy and regular and make sure you get enough rest. Go for a walk from time to time.
IMPORTANT:
Prepare for a marathon, not for a sprint!
Take your time.
First Response
Pay close attention to all signals a comatose person sends
To reach a comatose person, we will have to part from our usual ways of communication. We need to adapt to the world of coma, so we must try to speak in its language. Even if you don't possess proper knowledge and skills regarding, a loving approach in which you show you're willing to accompany, will help establishing a form of contact. Show yourself willing to communicate and sympathize with his/her possibilities, knowing that those are often very limited. Try to pick up the (form of) language he/she wants to speak with you.
When a reaction is perceived, however small or subtle it may be, tell the comatose person you noticed it, after which you encourage to repeat and fortify it. The more response is given, the better a communication can be build, that's the rule in general, but do know that also a very small reaction can be of great significance.
Be patient and take your time. When no response is noticed, or reactivity is reducing, take a break, take your time and try again later, perhaps in another way. Reactivity can be influenced by medication (morphine, painkillers) which have a possible delaying effect on response. In case of brain damage it can take a while, or be harder to communicate with the comatose person, depending on the level of damage, or depending on the length of the coma. Response can be minimal at first or hardly noticeable, and building contact or gaining response might take time and also patience.
On the other hand, people don't function as machines do, creating the possibility of someone heavily injured rehabilitating faster than expected even in a case of less injury. The way things will go is hardly predictable.
Keep a diary with all reactions you've perceived, including the circumstances in which there was response, for example; a twitch of an eyelid happening when someone approaches, a distinct response to music, speech, touch, or any other approach to establish contact. Pay close attention to consistent or frequent forms of signal, those can soon be used creating a binary communication, which allows the comatose person to respond with these signals, in a “yes” or “no” kind of way.
Response can occur in many shapes; a subtle movement of a finger, toe, mouth, nostril, eyebrow, an arm or leg, a hand, or any other moveable part of the human body. Also, coughing, gargling, swallowing, sighing, tears, making any sort of a noise, a small tic, looking in a certain direction, and opening or closing his/her eyes can all be important signals from out the comatose world. Whenever you let know that you noticed his/her signals, however small they may be, this person will know that you are able to understand these signals. He/she will understand that the language chosen enables the both of you to connect with each other.
Do know, that even the smallest of reactions can be a doorway to communication.
Contact
A minimal response might be an important step
In the impressive movie “Lorenzo's Oil”, a 10 year old boy went into a coma, due to a brain disease. At a certain point, he's able to tell his parents by rolling his eyes away, that he doesn't enjoy them reading him a certain book. Because of this repeating signal, the parents start to understand that they're able to communicate, and can now gain an answer to an asked question. Lorenzo answers “no” when rolling his eyes back, and “yes” by looking up and doing nothing. Later on, they stimulate Lorenzo gently by repeating the words: "Tell your brain to tell your hand that he is able to move your little finger." A small, minimal movement of the little finger will later on be a starting-point for further communication.
Two important things to keep in mind in dealing with a comatose person, is that all can be considered information, and information has to be communicated, and will be repeated for as long as it takes for it to be received.
An example from practical experience: a man went into a coma puts his left hand and fingers in a unnatural crooked position. The person with him puts her finger in the palm of his hand, whereupon he softly bends his fingers over hers.
This is a positive response in which she replies by softly squeezing his hand, saying she has noticed the bending, and also saying she is squeezing his hand. She squeezes his hand, and he squeezes back harder, she squeezes again and he clenches. She says: you squeeze with your left hand which is very good, keep going as long as you want. He firmly squeezes her during several minutes, after which he relaxes, the woman relaxes her hand at the same time, and when she lets go, she sees his hand is now calmly stretched, and no longer in this artificial crooked position.
A communication has taken place. What the exact content of the communication was, can be subject of psychological contemplating, but to the helper, the woman in this example, merely unimportant. What is important, is that contact is established, and it's very understandable that a comatose person can yearn for communication. It’s good to know that this needn't take place in a spectacular kind of way, and can be happening in a short amount of time. Supporting someone in making a communication happen, can be an important link in completing his/her inner processes. We don't have to interpret with these processes.
Your nearness and loving effort to be in contact, can already be of great meaning to him.
Binary communication
All of us have questions that he would like to ask to a person in a coma. Is the person in agony? Does the person want a treatment to continue or to be aborted? Should we continue life-support? What does he experience right now? How does he feel? Would he like to wake from coma? What is his opinion, or what are his feelings about life, about a possible life's ending, or about the physical care he is receiving? And there are many more questions like that. The method described below provides a guideline about how questions can be asked to a comatose person, and how answers may be obtained.
Communication is a two-way road, like ask and reply. In its most simple form, one human being can ask a simple question to another human being, just aiming for a confirming “yes” or a denying “no” reply. When communicating with someone comatose, a start can be made using questions that need only a defined reaction meaning “yes”. In a next phase, striving is developing a method of “binary” communication, in which we search for a way for the comatose person to express a “yes” or “no” at free choice to a question being asked.
Sounds and movements are the most effective way for a comatose person to respond to questions. Keep in mind that reactions may be delayed due to the seriousness of the brain-injury, or of course as a result of medication, and above all that the level in which a person in a coma is available for communication often varies with a stronger level of absence. When no response occurs, take a break or continue the next day, closely looking for possible changes.
Instructions for a binary communication set-up:
Notice and pace breathing
Sit next to the comatose person and adapt to his breathing rhythm. Tell the person you are there, then press the wrist on the inhalation;
Notice a repetitive signal
The possibility to set-up a binary communication-system is determined by detecting a repeating signal. For instance, you might notice a person lifting an eyebrow repetitiously, moving his mouth, bending a finger, making a noise, moving his head, closing the eyes, squeezing your hand, or any other way of a subtle signal;
Establish contact using the signal
Try to establish a communication with a signal that's as clear as possible and mark this as a signal, by saying: "I notice you move your eyebrow, you can use that eyebrow to communicate."
Hand touch
In addition, place your hand lightly in the area where the signal originates to give the person more access to that particular signal. Wait for a reaction. The next time the person uses that signal, respond enthusiastically, encourage to repeat, praise him and suggest using that particular signal to communicate. Ask the person if he agrees and ask him to give the signal for a “yes”. Touch the place when the signal is given again, because by doing this, you might amplify the signal. When the signal is then given, a communication has been set-up. Do know, that there might not immediately be a reaction, so you might have to repeat the process later on. It can be very hard for a comatose person to control a movement, and to use it as a communication-signal. He might need some more time for it. Just try it again later;
Setting up a yes- and-no communication
Once you have established a signal for communication, a binary communication can be started. Say to the person that this signal will be used to communicate. Tell him, that when you ask a question, giving the particular sign will mean <yes>, and not giving a sign at all means <no>. Ask the person if he understood, and if so, to repeat using the signal:
"From now on, you move your eyebrow to say <yes>, if you understand, move your eyebrow". When this really happens, the signal is established.
Another possibility can be that the person gives another signal, for example squeezing your hand. This might mean he wants this to be the signal. Ask him again in the same way if that is what he wants, and propose using that 'squeezing the hand' as a <yes> signal.
A lot of people move their eyes. Therefore, the muscles around the eyes are perfectly suited to be used as a communication-signal. To do this, touch one of the muscles above the eyelids, saying: "You can use this muscle to say <yes> if you want to. We will call this muscle-movement a <yes>, and doing nothing counts as a <no>. If you agree, say yes by moving that muscle now".
Respond with enthusiasm when the signal is given, and let him know you've seen and noticed it;
Ask questions about the altered state
After you establish a signal of communication, tell the person that in a moment you will ask some questions. Give him time first to prepare inwardly. Then, by speaking slow and clear, you start asking questions that can be answered with a simple <yes> or <no>, like: "Are you in pain?". Notice any responses. When the assembled signal is given, this means <yes>. For the time being, no reaction means no>. Remember that responses may be a bit delayed because of medication or physical impairment. You'll want to ask a lot, and you'll have all opportunity for this. Maybe you'd mostly like to ask about persons or events from a recent past, but more important is connecting to the person's current state of mind, by asking about how his experiences are at the moment. So ask questions related to the person’s current altered state, such as:
"Are you happy with where you are now?"
“Are you having a good trip down there?”
"Are you in pain?"
"Do you want to come back?"
"Do you want to remain in this state?"
"Do you want to go on living?"
If you are unsure about the answers to these questions, you can wait a few days, and then just ask them again.
Notice and establish a second signal
When binary communication is on track after a while, and a clear signal is used for <yes>, it's time to start looking for another signal to replace the silence used for a <no> answer, because giving an assembled signal is more explicit than giving no sign at all. Do this the same way as you did establish the first signal. Establishing the second signal for the answer <no> makes communicating a lot easier and a lot more effective.
Congratulations! You have now established a binary communication with another human being, who is likely to be very happy with this, in probable desperate need of your support and attention.