Most family members find the hospital experience a "roller coaster ride through hell." 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. This is the place where bad things happen--people get very sick, or die. Making this more frightening is that physicians and nurses often speak in another language. They speak in what I call "medicalese" (like Chinese). For example, people don't have a bruise, they have a "hematoma"--which is exactly the same thing as a bruise. Doctors and nurses are very busy and may be impatient with family members who are not sure of what questions to ask. Doctors tend to give quick, short news with lots of medical terms. When family members calm down enough to be rational, getting questions answered is not so easy. No wonder dealing with the hospital can be a very frustrating experience. It doesn't have to be this way.
First of all, I think it's important for family members to get educated. You need to read as much as you can about head injury. Most often, medical pamphlets tend to be too technical. They explain medical terms in a format that most people don't understand. The goal of this book is to improve your knowledge. Once you've read enough material, then what?
The typical thing that family members go through is what I call "the vigilance." If someone is hurt, family members want to be there 24 hours a day. What's wrong with that? Medical staff know that treating a head 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 for the long race. There are some phases that head-injured patients go through. If you understand them, you will be better able to pace yourself.
Most people who have a head injury have little or very vague recall of their hospitalization. Even though they have extensive conversations with nurses and staff, they have few memories of what happened in the hospital. When they are in the hospital, the head-injured person may go through what I call the "confused and agitated phase." They are confused in the sense that they are not sure where they are. They may not know they're in the hospital or don't know the city they are in. They are not sure of the year, month, or day. They generally know who they are, but they may not be too clear who's visiting them. There's also the agitated or restless phase. Sometimes they have to pace up and down the floor of the hospital. If a nurse wants them to do something (such as go to the bathroom), the patients may strike out at the nurse. This is a very tough time for family members. Family members are trying to give the head-injured person a lot of love and caring, but the head-injured person may not respond well to this. For some people with head injury, this "confused and agitated phase" can last minutes. For others, this phase can go on for months. If you have a family member in this phase now, remember this important fact: Nearly 99% of all patients eventually get out of this confused/agitated phase. That's a good statistic. Be careful not to burn yourself out during this phase. The head-injured person will need you more further down the road.
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. Every hospital has a social worker who can help you to understand what's going on, and to make plans for medical care. The social worker can also help you connect with other family members in the hospital who are going through the same thing. Sometimes talking with other family members who have similar experiences can be very helpful. If there are no other families in the hospital, ask the hospital social worker if there is a family who's recently gone through this stage. The social worker might be able to contact that person for you. Meeting with people who have been through this is VERY helpful.
WHAT CAN I DO IN THE HOSPITAL?
Is there anything you can do to help with the confusion and agitation phase? One thing is to 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 the normal hospital business. For example, there is speech therapy, occupational therapy, and physical therapy during the day. The head-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 and keep the TV off. People will send the patient hundreds of cards, letters, stuffed animals, pictures, and so on. Family members should try to limit this to a few things because it can be visually distracting and overwhelming.
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. Make your speech 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. The head-injured person may have problems understanding long sentences. Although the patient may speak in long sentences, the ability to understand may be limited (talk to the patient's speech therapist about this). Should you correct people who say something silly 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 favorite hobbies or things they enjoyed doing. In general, people with head injuries 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.
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. In the early phase of a head injury, that may not be a good idea, however. You can make them very agitated by invading their space or grabbing them. There is even a condition that head-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 physical therapy. The person can come back from physical therapy highly agitated. It's important that the physical therapist does their job. The price is often agitation. But if you or a guest are visiting, be careful about touch if the patient is agitated.
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 day or evening with the patient only to go home and have 50 people call them to ask, "Well, what happened in therapy today?" They don't get to bed until midnight or one o'clock just because they have all these people calling them. I would suggest 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 I recommend is that every family member get 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's better that you just use the answering machine rather than answer phone calls and wear yourself down.
WHAT TO DO AFTER LEAVING THE HOSPITAL
Now lets talk about what to do when the head-injured person gets home. Often this is a very big event for family members. It's a great occasion. But unfortunately, it's just the beginning of the recovery process. The medical injuries (basically the bruises and broken bones) heal very quickly. But healing from a head injury can take years. When someone goes home, many family members think, it will just be just a couple more months. In truth, it's usually a lot longer.
In the months following discharge from the hospital, it's important to be aware that the head-injured person may have a fatigue problem. In other words, they get very tired quickly. When head-injured people get home from the hospital, they may have only 3 or 4 good hours in the day before they're wiped out. They may easily fall asleep, or they may not be able to concentrate. In general, the person is better in the mornings and has tougher times in the afternoons. It's important for family members to remember this. Often the evening comes around and family members want to bring relatives over to see them. Those evenings are often tough on the head-injured person. In the early weeks, one of the things that I would suggest is to try to limit "welcome home parties" and visitors. Have them scaled down and shorter in length. For example, try a welcome home party that lasts for about a hour, then have everyone leave. The head-injured person may want to see friends right away. You may need to limit it to just one hour or two hours, depending on how much the person can tolerate. At the same time, you don't want to limit it too much, because the person may become depressed and feel isolated from friends. It is always a very careful balancing act in terms of how much the person needs versus what can be dealt with.
I think another thing that families find difficult is treating the person normally. Often, family members unknowingly will talk down to the patients, or treat them with pity. The head-injured person wants to be treated like everyone else. It's also important to note that many friends of the patient will be very uncomfortable talking about the injury. For most people, this is very frightening. Many people harbor thoughts of "this could have been me," and talking about it scares them. Visitors often feel that they have to get into this very deep discussion about the injury, but are afraid the head-injured person will be too upset by it. For visitor or guests, a very brief acknowledgment of the person's injury is best. If the head-injured person wants to talk about it, fine, but they usually want to get on with life and have normal conversations about how things are going. For example, most people diagnosed with a serious illness, such as cancer, don't want to talk about their illness all the time. They also like to talk about the things they love to do, their work, their friends, what's happened since they've been away. It's important to try to normalize conversations.
Family members have difficulty dealing with someone who looks the same but is different. Head-injured people may talk the same and walk the same, but will be emotionally or behaviorally different. For example, they may be more irritable, or more cranky, and perhaps more impulsive. For family members, it's very hard to deal with this. It's almost if someone has come in and stolen their personality. This leads to a loss of a lot of friends. In general, I have what's called The 90% Rule. Over a one to two year period, the head-injured person may lose 90% of their friends. In the early phases of the hospital stay, their friends are there a great deal. They send a lot of cards and there's a lot of sympathy. But as time goes on, those friends seem to fade away. Although this is not true of everybody, it is a very common problem. Family members get very angry at those people who tend to fade away. It's important to understand that those who are not around may often have difficulty dealing with serious illness. Most people want to live a happy, carefree life. They don't want to think of things like head injury or cancer or someone dying terribly. People don't want to handle that level of reality. Family members can get very upset and may wish to confront friends about why they aren't around. What a family should do is encourage new relationships. New people who meet head-injured patients will like them the way they are. They don't know how they used to act before they were injured.
As I work with head-injured patients, I find it very common that the new friendships are very solid friendships, but they take time to develop. This often means that family members have to let go a little bit. When the head-injured person is with friends, the friends may not be as cautious. For example, someone may fall easily, or friends don't make transfers in and out of cars as well as family members. There is always some risk that the person may fall or be injured. It is important to understand the concept of acceptable risk. Although family members want to prevent any further harm to the injured person, nothing in life is risk-free. For family members, it's very difficult to come to terms with this concept. The head-injured person needs to get out and be with friends, away from the sometimes protective cocoon of families. It's a difficult balancing act, but new activities must be encouraged.
Dealing with Doctors || Family Members: What You Can Do In the Hospital Setting
By Dr. Glen Johnson, Clinical Neuropsychologist
5123 North Royal Drive || Traverse City, MI 49684
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