The Fear of Going to the Hospital
The family members dealing with the hospital experience, find it difficult to deal with on a daily basis. Usually everything is fine, until the family receives that telephone call that they need to come to the hospital. This begins immediate fear, with the worst possible thoughts going through their heads. The hospital is where bad things go on, where people are very sick and in some cases die. Then to make this experience even worse than imaginable, reaching the hospital doctors and nurses talk in a way they do not understand. It is like listening to a foreign language. A good example of this is when the medical professionals say the person has a hematoma; this could sound terrible to a family member, when it is actually nothing more than a bruise. The other problem is the nurses and doctors are extremely busy and may become impatient with family members, when they do not know what questions to ask. Doctors in the hospital will normally give short fast answers, which have a lot of medical terms, even when the family is calmed down and able to ask pertinent questions. Getting the answers to their questions are not easy. This is frustrating; it doesn’t need to be and should not be.
Become Educated to the Medical Terms
After the initial meeting with the doctors and nurses, since this is going to be more than a day or two in the hospital setting, the family members need to become educated. In doing this, medical pamphlets are generally to technical and explain the medical condition in medical terms the untrained person really doesn’t understand. There are other ways to find the information in a non-technical format. When you have learned what you need to know, then what is next?
Next Step is to…
Family members will normally go through a stage where they are at the bedside of the patient all the time, and they would like to be there 24 hours a day. There is a problem with this, when the patient has suffered a head injury. As the medical staff will know, this is like a long race, and the family needs to pace themselves. This is not going to be a short run, and even in a race, you may start out fast, but then you need to sprint, if you are going to reach the end of the long race. There are different stages the head injury patient will go through and understanding the stages will help the family members able to pace themselves.
The Stage of Confusion and Agitation
In most cases the person that has had the head injury, will have only a vague recall of their hospital stay. This is even though they interacted verbally with doctors, nurses and other hospital staff; they will have few memories of the hospital stay. While the person is in the hospital, they will go through different stages; one may be a confused and agitated state. The confusion is why they are in the hospital, and may not even know what city they are in, the month, the day or the year. Usually they know who they are, but may be unsure of the people who are visiting them. Then there is an agitated stage or restless stage, in which some patients pace in their room and in the hallway. If a nurse directs them to do something they lash out or even strike out at the nurse.
This is an extremely difficult time for the family members, since this is behavior they have never seen from the person. Even when the family is attempting to show love and support for the person who suffered a head injury, the patient may not respond in the manner they expect. This stage of confusion and agitation for some patients only lasts minutes, while for others it can drag on for months. What the family needs to understand and remember during this stage, is that 99 percent of all head injury patients will eventually move out of this confused and agitated behavior. This is when the family members need to ensure they do not burn out and to remember 99 percent is a good statistic. It is also essential to remember this person who suffered a head injury will need the family member more during the other stages of recovery.
The Importance of Having a Social Worker
The family being worn out is common and known as burn-out. How will they know if this is happening? There are some signs, including feeling sick to your stomach when you go to the hospital, feeling anxious, or avoiding to go and then feeling guilty or feeling guilty about being anxious. This is not uncommon and nothing to feel ashamed about, because you are not the only person that goes through these feelings, everyone does at some point. Discussing these feelings with others can be helpful and all hospitals have a social worker.
The social worker can help family members understand what is happening and how to plan for the necessary medical care. One of the other things the social worker can do, is help the family connect with other families going through the same thing. Talking to other people that are going through a similar situation can be helpful and in the event that there are no other patients families with a similar situation, the case worker may be able to connect the family with another that has recently gone through this current stage. Meeting with people that have had a family member with a brain injury can be helpful; it can calm the fears and anxiety that are experienced.
How can the Family Help in the Hospital
Families question whether there is anything they can do during the confusion and agitation their loved one is experiencing. There is one major thing the family can do, and this is to reduce stimulation, during the early part of the recovery. Patients that have a lot of stimulation during the day, will often then become confused or agitated in the late afternoon or evening. The family is not totally responsible for stimulation, since there will be unavoidable stimulation on the part of the hospital.
This can include the usual daily activity in caring for the patient, speech therapy, physical therapy and occupational therapy during the day. This will make the person that had a head injury extremely tired, from the activities and by late in the day, it will only take a small amount of stimulation to make them agitated. Decreasing stimulation can be done by turning off the television and closing the blinds, and the family can also keep the cards, flowers, letters, pictures and stuffed animals that may be sent by well-wishers to a limit in the room. This can be visually distracting and overwhelming to the patient.
Families Should Use Certain Techniques
It is important when speaking to the person to watch your tone of voice. In order for the patient to listen, you will need to speak in a calm manner and slowly. Short sentences should be used and even use single words, as it is easier for them to understand in the early stages. This could be “hungry?” “Do you have pain?” “Show me where.” Head injury patients can have difficulty understanding longer sentences. Speak to their therapist about the limit of their ability to understand sentences. In the early part of the confusion and agitation stage, families wonder if they should correct the person when they say something that makes no sense. An example of this could be saying “ I want to leave the hospital and go swimming.
The family questions whether they should answer with, “it is winter,” or telling them they need the medical care they are getting. The main problem with this will be that the patient will not really understand why you are saying this or your reason. The best thing to do with someone that is confused is to change the subject of conversation. Creating a distraction, such as asking them if they want a drink or to go for a walk, can help and talking about something they like, a hobby or sport. One thing about people with head injuries, normally they will have a good long-term memory, and are able to remember things that happened even years ago. It will be their short-term memory of recent events that is not so good. Talking about things they enjoyed in their past can be comforting for the person with a head injury.
Physical Touch
It is not always a good idea to touch the person, when visiting them in the hospital, even though this is meant to be a reassuring gesture. This is acceptable in our culture and seeing someone upset or crying, it is not unusual to place a hand on their hand in a reassuring manner or even give them a hug. This is normally accepted as a good thing, however in the early stages of a head injury it might not be a good idea. This can cause the person to become agitated, because they perceive it as invading their space or grabbing them.
One of the other problems with these affectionate gestures, is one of the conditions that can be associated with head-injured people is touch is perceived as pain, rather than affection. It is best to carefully test this, slowly to see how the person will react. The basic rule in the early stages of a head injury, is less is better approach. The person is not without human contact, they receive a lot of touching during physical therapy and in some cases come back to their room from physical therapy in a highly agitated state. Though it is still important for the therapist to do their job, which is a part of the healing treatment, even though it can cause agitation in the patient. The visitor or family member should be careful about any type of touching, especially if the patient is agitated already.
Give Updates
Family members can be overwhelmed by other family and friends, with the need to constantly give updates on the patient’s condition. There are many people that go to the hospital daily, during the day or in the evening and then are expected to spend to go home and either make calls or have people call them asking what happened in therapy, how the person is feeling and other questions. Then they don’t get to bed until it is very late and start this all over again the next day, along with work and other obligations.
It is suggested that only one or two family members visiting the hospital supply this information, to another family member that can inform everyone else. This relieves some of the burden, on the immediate family members.Getting an answering machine is another thing that can be done, since the family will be extremely worn out, from the stress of the injury. Sleeping properly will be important, as it can help reduce stress or cope with it, and this way the machine can answer the telephone when the family member is resting.
The Beginning of a Long Recovery Process
When the person that has had a head injury comes home from the hospital, this is a large event for the family. While it is a good event, it is the beginning of a long recovery process. Any other medical injuries, like bruises and broken bones may heal quickly, but head injuries do not heal at the same rate, they can take years to recover from. The family often thinks that in a few months everything will be back to normal, when the truth is, it can take years and in some cases the person will never fully recover from their head injury.
It is important for the family to understand that in the months following a head injury and discharge from the hospital, the person may have a problem with fatigue. They may tire very quickly. After coming home from the hospital, they may only have 3 or 4 hours a day, where they feel good, after which they are completely worn out. They may not be able to concentrate and fall asleep easily. Mornings or early in the day is better for the person than later in the afternoons.
The family members need to remember this, because when relatives or friends want to visit the person in the evenings, it is generally very hard on the head injury person. Visitors should actually be limited in the first weeks after the person comes home from the hospital and any visits should be of a short duration. If a “welcome home party” is planned, keep that to a minimum of an hour and then have everyone leave.
This should only be done if the person that has had a head injury wants to see people right away. If they want to have friends visit right away, this should be kept to visits of one or two hours, depending on what they are able to tolerate. They should be permitted to have visits, if they want visitors, otherwise it could cause them to feel depressed and isolated. This must be handled carefully by the family, for what the person needs or wants, but how much they can actually deal with.
The families of these patients often find it difficult to treat them like they normally would, and in some cases it results in a family member talking down to the patient or treating them with pity. The patient wants to be treated like everyone else and the way they normally would be. Another thing that happens is friends may feel uncomfortable talking about the injury, since most people find this kind of problem frightening. In some cases they think “it could have happened to me,” so talking about it can be scary.
In some cases visitors think they have to know all about the head injury and are afraid it will upset the person. The best way for relatives and friends to handle this situation, is to briefly acknowledge it and then change to another topic. If the person that has had this injury wants to talk about it more they will, but in most cases they want to have normal conversations about other things. It is similar to someone that has been diagnosed with a disease or even cancer; they don’t want to talk about their illness constantly. They want to talk about friends, hobbies, things they like to do and work. Normal conversations are important.
It is difficult for family members to deal with the person, because they look the same and act different. The person may walk the same, talk the same, but they may act different emotionally or their behavior might be different. They could be more impulsive, irritable or cranky, and for family members this difference is difficult and like they were given a different personality. This change in the person may cause them to lose friends, and over a period of two years they may even lose up to 90 percent of their friends. These are friends that visited at the hospital often, sent cards and had a lot of sympathy, but as time goes on during the extended healing process these good friends begin to vanish. This is not true with every patient who suffers a head injury, but it is a common problem. Family members often become angry with the friends that stop the friendship. The family should realize that many people have difficulty dealing with serious illness and the stages of recovery.
As a rule most people do not want to think about illness or dying, they want to have a carefree life and do not want to deal with this form of reality. The family members may even want to confront these friends about why they have stopped visiting, since they are upset by this. The better thing for the family to do is encourage new relationships, because new friends will accept the person with a head injury the way they are. They have no knowledge of how the person acted prior to being injured.
New friendships may take longer to become a solid friendship, but it is not uncommon for the patient to form them. The family will need to give the person some room, to meet new people, and will find the new friends treat them normally and are not cautious. This can mean when the person is out with friends, if they have difficulty getting into a vehicle or out, they may have a risk of falling and getting injured. The family has to understand what acceptable risk is for the patient, even though they want to protect them. There is always risk in life, even though this is very hard for the family to deal with. The person that suffered a head injury needs to get out, away from the protection of the family sometimes, with friends. Even though it is difficult, the family should encourage new activities.