Acquired Brain Injury Information for Family and Friends
Roller Coaster Ride
Most family members find the hospital experience a "roller coaster ride." Their lives are going along fine when suddenly they are told to come to the hospital. The worst thoughts go through their heads and they are very afraid: e.g. ‘this is the place where bad things happen’ – ‘people get very sick, or die’. Making this more frightening is that clinicians’ and nurses often speak in another language. For example, people don't have a bruise; they have a "haematoma"--which is exactly the same thing as a bruise. Doctors and nurses are very busy and often family members are not sure of what questions to ask. Sometimes getting questions answered is not so easy and hospital can be a frustrating experience. It doesn't have to be this way.
Getting Educated
First of all, it is important for family members to get educated about rehabilitation after brain injury.
To learn about brain injury you have a number of options:
· You could speak to the Consultant or medical team who may be able to show you a scan of the patient’s brain injury.
· You could access support organisations, such as Headway (www.headway.org.uk).
Running a Marathon
The typical thing that families describe going through is "the vigilance." If someone is hurt, family members and friends often want to be there 24-hours a day. What's wrong with that? Medical staff know that treating a brain injury is like running a long race. You don't sprint a 26-mile marathon. You may start out intensely, but you have to pace yourself. Be careful not to burn yourself out, the brain-injured person will need you further down the road.
Phases in Recovery
There are some phases that brain-injured patients may go through. Understanding them might help you to pace yourself for the journey ahead. The following is typical for people who have had a traumatic brain injury (that is, a bang to the head), but some of the same features can also be seen with other types of brain injury.
Confused and Agitated Phase
Although some have clear memories; other people who have a brain injury have little or very vague recall of their time in hospital, for some people this includes their time in rehabilitation. Even though they may have extensive conversations with nurses and staff, they may have few memories of what happened. When they are in the hospital, the brain-injured person may go through a "confused and agitated phase." They might be confused in the sense that they are not sure where they are. They may not know they're in the hospital or what city they are in. In addition they may not be sure of the year, month, or day. They generally know who they are, but they may not be too clear who's visiting them.
Agitated and Restless Phase
There's also the “agitated or restless” phase. Sometimes patients pace up and down the floor of the hospital, or they may constantly move around their bedroom. If a nurse wants them to do something, such as go to the bathroom, patients may strike out at the nurse or make a rude comment. This is a very tough time for family members. Family members are trying to give the brain-injured person a lot of love and caring, but the brain-injured person may not respond well to this. For some people with brain injury, this "agitated and restless” phase can last minutes. For others, this phase can go on for weeks or months. If you have a family member in this phase now, remember this important fact: a lot of patients eventually get out of this phase, there is also a chance your relative will too. Be careful not to burn yourself out during this phase. The brain-injured person will need you further down the road.
What Can I Do In the Hospital Setting?
Is there anything you can do to help? In the confused, agitated or restless phase the one main thing you can do is reduce stimulation. In the early recovery period, someone who gets a lot of stimulation during the day will often become agitated or confused in the late afternoons or evenings. Some stimulation is an unavoidable part of rehabilitation. For example, some patients will have speech therapy, occupational therapy, and physiotherapy during the day. The brain-injured person can become very tired by these activities. By the evening (or even earlier), it only takes little stimulation to get someone agitated. Try to decrease stimulation in the person's room. Close the blinds, think about keeping the TV off and limit the number of people in the room. People will send the patient cards and letters, you should try to limit this to a few things because it can be visually distracting and overwhelming.
Tone of Voice
It's not what you say, but the tone of your voice that's important. If you speak calmly and slowly, people will tend to listen to you. If your relative has limited ability to understand, speak in short sentences, even in single words, such as, "Hungry?" "Are you in pain?" "Show me where you are in pain." Very simple speech helps someone in the early stages.
Logic and Reasoning
The brain-injured person may have problems understanding long sentences. Although the patient may speak in long sentences, the ability to understand may be limited (you could talk to the patient's Speech and Language Therapist about this). A question relatives often ask is ‘should you correct people who say something strange in the early confusion/agitation phase?’ For example, the person may be saying, "I want out of this hospital so I can go skiing." Many family members may debate with that person saying, "No, it's not winter," or "No, you need medical care." Patients, who are confused or agitated, won't really understand your logic or reasoning. When someone is really confused, it's better to change the topic of conversation. You might distract them by saying "How about a walk? You want something to drink?" Talk about their favourite hobbies or things they enjoyed doing. In general, people with brain injuries often (though not always) have good long-term memory (things that happened years ago) but their memory of recent history may not be good. Using old information may be comforting to some people.
Physical Contact
When visiting a confused patient in the hospital, physically touching the patient is not always a good thing. Many times in our culture, we use touch as a reassuring gesture. When people are crying or upset, we may put our hand on theirs, or we may give them a big hug to reassure them. Normally, that's a good thing. However, in the early phase of a brain injury, that may not be a good idea. You can make them very agitated by invading their space or grabbing them. There is even a condition that brain-injured people can get where simple touch is often perceived as pain. You need to test the waters with touch, and you need to be very careful about it. In general, less is better in the early phases. Often the patient gets plenty of touching in therapies, such as physiotherapy. The person can come back from physiotherapy highly agitated. It's important that the physiotherapist does their job. The price is often agitation. But if you or guests are visiting, be careful about touch if the patient is agitated.
Looking After Yourself
Sharing Information
One of the things that overwhelm family members is the constant reporting to other family members. Many people come to the hospital and spend the afternoon or evening with the patient only to go home and have 50 people call them to ask, "Well, what happened today?" They don't get to bed until late just because they have all these people calling them. It is advised that one or two main family members who visit the hospital give this information to another family member who can make all the calls. Another thing that families have discussed is the importance of an answering machine. As a family member, count on being extremely tired from all the stress of the injury. Adequate sleep is very important for coping with stress. Sometimes it is better that you just use the answering machine rather than answer phone calls and wear yourself down.
Spotting Signs of Burn-Out
Family burn-out is very common. How do you know if you are getting burned out? When you go to the hospital, do you start feeling sick to your stomach? Do you start getting anxious when you get close to the hospital? Do you avoid going to the hospital or feel guilty about these feelings? Don't be ashamed if you feel this way - everybody does. It is important to talk to others about your feelings – this could include family members, members of the clinical team or relatives of others in similar situations.
Our Consultant Speech and Language Therapist is a highly specialist speech and language therapist working with people with acquired brain injury across their rehabilitation. Contact us today for a free, no obligation discussion of your needs or to arrange an assessment.
Roller Coaster Ride
Most family members find the hospital experience a "roller coaster ride." Their lives are going along fine when suddenly they are told to come to the hospital. The worst thoughts go through their heads and they are very afraid: e.g. ‘this is the place where bad things happen’ – ‘people get very sick, or die’. Making this more frightening is that clinicians’ and nurses often speak in another language. For example, people don't have a bruise; they have a "haematoma"--which is exactly the same thing as a bruise. Doctors and nurses are very busy and often family members are not sure of what questions to ask. Sometimes getting questions answered is not so easy and hospital can be a frustrating experience. It doesn't have to be this way.
Getting Educated
First of all, it is important for family members to get educated about rehabilitation after brain injury.
To learn about brain injury you have a number of options:
· You could speak to the Consultant or medical team who may be able to show you a scan of the patient’s brain injury.
· You could access support organisations, such as Headway (www.headway.org.uk).
Running a Marathon
The typical thing that families describe going through is "the vigilance." If someone is hurt, family members and friends often want to be there 24-hours a day. What's wrong with that? Medical staff know that treating a brain injury is like running a long race. You don't sprint a 26-mile marathon. You may start out intensely, but you have to pace yourself. Be careful not to burn yourself out, the brain-injured person will need you further down the road.
Phases in Recovery
There are some phases that brain-injured patients may go through. Understanding them might help you to pace yourself for the journey ahead. The following is typical for people who have had a traumatic brain injury (that is, a bang to the head), but some of the same features can also be seen with other types of brain injury.
Confused and Agitated Phase
Although some have clear memories; other people who have a brain injury have little or very vague recall of their time in hospital, for some people this includes their time in rehabilitation. Even though they may have extensive conversations with nurses and staff, they may have few memories of what happened. When they are in the hospital, the brain-injured person may go through a "confused and agitated phase." They might be confused in the sense that they are not sure where they are. They may not know they're in the hospital or what city they are in. In addition they may not be sure of the year, month, or day. They generally know who they are, but they may not be too clear who's visiting them.
Agitated and Restless Phase
There's also the “agitated or restless” phase. Sometimes patients pace up and down the floor of the hospital, or they may constantly move around their bedroom. If a nurse wants them to do something, such as go to the bathroom, patients may strike out at the nurse or make a rude comment. This is a very tough time for family members. Family members are trying to give the brain-injured person a lot of love and caring, but the brain-injured person may not respond well to this. For some people with brain injury, this "agitated and restless” phase can last minutes. For others, this phase can go on for weeks or months. If you have a family member in this phase now, remember this important fact: a lot of patients eventually get out of this phase, there is also a chance your relative will too. Be careful not to burn yourself out during this phase. The brain-injured person will need you further down the road.
What Can I Do In the Hospital Setting?
Is there anything you can do to help? In the confused, agitated or restless phase the one main thing you can do is reduce stimulation. In the early recovery period, someone who gets a lot of stimulation during the day will often become agitated or confused in the late afternoons or evenings. Some stimulation is an unavoidable part of rehabilitation. For example, some patients will have speech therapy, occupational therapy, and physiotherapy during the day. The brain-injured person can become very tired by these activities. By the evening (or even earlier), it only takes little stimulation to get someone agitated. Try to decrease stimulation in the person's room. Close the blinds, think about keeping the TV off and limit the number of people in the room. People will send the patient cards and letters, you should try to limit this to a few things because it can be visually distracting and overwhelming.
Tone of Voice
It's not what you say, but the tone of your voice that's important. If you speak calmly and slowly, people will tend to listen to you. If your relative has limited ability to understand, speak in short sentences, even in single words, such as, "Hungry?" "Are you in pain?" "Show me where you are in pain." Very simple speech helps someone in the early stages.
Logic and Reasoning
The brain-injured person may have problems understanding long sentences. Although the patient may speak in long sentences, the ability to understand may be limited (you could talk to the patient's Speech and Language Therapist about this). A question relatives often ask is ‘should you correct people who say something strange in the early confusion/agitation phase?’ For example, the person may be saying, "I want out of this hospital so I can go skiing." Many family members may debate with that person saying, "No, it's not winter," or "No, you need medical care." Patients, who are confused or agitated, won't really understand your logic or reasoning. When someone is really confused, it's better to change the topic of conversation. You might distract them by saying "How about a walk? You want something to drink?" Talk about their favourite hobbies or things they enjoyed doing. In general, people with brain injuries often (though not always) have good long-term memory (things that happened years ago) but their memory of recent history may not be good. Using old information may be comforting to some people.
Physical Contact
When visiting a confused patient in the hospital, physically touching the patient is not always a good thing. Many times in our culture, we use touch as a reassuring gesture. When people are crying or upset, we may put our hand on theirs, or we may give them a big hug to reassure them. Normally, that's a good thing. However, in the early phase of a brain injury, that may not be a good idea. You can make them very agitated by invading their space or grabbing them. There is even a condition that brain-injured people can get where simple touch is often perceived as pain. You need to test the waters with touch, and you need to be very careful about it. In general, less is better in the early phases. Often the patient gets plenty of touching in therapies, such as physiotherapy. The person can come back from physiotherapy highly agitated. It's important that the physiotherapist does their job. The price is often agitation. But if you or guests are visiting, be careful about touch if the patient is agitated.
Looking After Yourself
Sharing Information
One of the things that overwhelm family members is the constant reporting to other family members. Many people come to the hospital and spend the afternoon or evening with the patient only to go home and have 50 people call them to ask, "Well, what happened today?" They don't get to bed until late just because they have all these people calling them. It is advised that one or two main family members who visit the hospital give this information to another family member who can make all the calls. Another thing that families have discussed is the importance of an answering machine. As a family member, count on being extremely tired from all the stress of the injury. Adequate sleep is very important for coping with stress. Sometimes it is better that you just use the answering machine rather than answer phone calls and wear yourself down.
Spotting Signs of Burn-Out
Family burn-out is very common. How do you know if you are getting burned out? When you go to the hospital, do you start feeling sick to your stomach? Do you start getting anxious when you get close to the hospital? Do you avoid going to the hospital or feel guilty about these feelings? Don't be ashamed if you feel this way - everybody does. It is important to talk to others about your feelings – this could include family members, members of the clinical team or relatives of others in similar situations.
Our Consultant Speech and Language Therapist is a highly specialist speech and language therapist working with people with acquired brain injury across their rehabilitation. Contact us today for a free, no obligation discussion of your needs or to arrange an assessment.