Soon after rehabilitation for a brain injury or illness begins, family members and friends often ask what they can do to help the person recover. There is much you can do, and what to do specifically depends, of course, on the person, the circumstances, and the injury.
This handout is written to include a wide range of brain injury severity. It assumes that the person may be severely impaired on first leaving the hospital and that you may have to do a lot for them and control a lot of their decisions at first. Even if the person has not been severely injured, however, the principles here still apply although some of the examples may not.
If you are the person with the brain dysfunction reading this, congratulations! You are taking an important step in working on your own recovery. You can use this, too, to help you choose those activities that will be most helpful to you, and to understand how and why to use the help of others.
Here are some general principles of helping with recovery at home:
- LOVE, SUPPORT, AND UNDERSTANDING. These need to be your first priorities, because you can supply these in ways that rehabilitation professionals cannot.
- SAFETY. When the person with a brain dysfunction leaves the hospital with you, you must also put priority on helping that person avoid dangerous situations. The rehabilitation team can provide guidance, and you must also use common sense.
- PLANNING TREATMENT PRIORITIES. You probably know more than the rehabilitation team about what your home is like, what work is like, and what is important to the life of the person with the brain dysfunction. You can help the rehabilitation staff use this information to plan treatment.
- LEARNING FROM THE REHABILITATION TEAM. Each individual is unique and each brain injury or illness is unique. Be sure to learn all that you can from the rehabilitation team about the specific problems and strengths that the person with the brain dysfunction has, and the specific strategies you can use to help out. If you are not sure you understand, ask again. Take notes. Be sure you understand well enough to do what you will need to do and to teach others. You may have to teach other family and friends what to do. If a team member suggests that you do something, see if you can practice it with that person watching to be sure you do it right.
- A PLACE FOR RECOVERY. Recovery from brain injury depends on medical recovery, but also on the experiences the person has during the time of recovery. These experiences include what happens in formal rehabilitation programs, but also what happens at home and in the community.
A. PHYSICAL CHANGES. Sometimes the rehabilitation team will recommend physical changes to the home. These can include many things such as grab bars, wheelchair ramps, clocks, calendars, alarms, memory books, signs, or reducing noise.
B. HOME THERAPY. Sometimes the rehabilitation team will recommend formal home therapy exercises. These might be physical exercises, special activities at home or in the community, or cognitive exercises done with talking, paper and pencil, a tape recorder, a computer, or other materials.
C. CHANGES IN ACTIVITIES. Often the everyday activities of the home and community can be changed somewhat to help out recovery. You can do this even when there is no opportunity for a formal rehabilitation program. Here are some principles of how to do that, followed by some specific examples:
1) THE ZONE OF RECOVERY. You should encourage the person with brain dysfunction to resume old activities as much as possible. When this is not possible, try new meaningful, fulfilling, and useful activities. But how can you do this when the person is not ready? You may need to change the activity to make it possible. You need to look for the person's Zone of Recovery.
Zone of Recovery
Can do the task easily, independently
Can do the task with some help
Can't do the task ecept with much help
If an activity is too easy the person may become bored and even resentful of being given a child's task or too little responsibility. If they can do it independently and easily, then it may not contribute much to recovery. Someone who is only allowed to do this kind of activity is being overprotected. (Of course, all of us have boring, easy things to do that are part of our usual responsibilities, and people with brain dysfunction don't get to avoid these just because they are boring.)
If an activity is too hard the person may get frustrated and angry, and eventually discouraged and depressed.
An activity that is just right is one that is a challenge, and that the person can do with some help (physical help, or directions, or reminders).
For example, Elizabeth was a good cook before her head injury, but when she got home from the hospital and tried to cook dinner nothing came out right. She spilled and burned things, started making things she didn't have the ingredients for and couldn't substitute, forgot to add spices or added them twice, and generally made a mess. Her husband said she had to keep trying, it was the only way. The next time she tried she got so frustrated she threw a tomato at the TV he was watching in the living room. Cooking dinner was not appropriate for her at that time; it was in her Frustration Zone.
Her husband switched tactics. He prohibited her from cooking anything, but made her wash all of the dishes, which she could do well. It was a large family and a big but boring job that the children usually shared. This time a sponge hit the TV. This was not an appropriate task; it was in her Boredom Zone.
Finally, her son offered to cook dinner with her. He asked her what she wanted to make, then guided her in checking that they had the ingredients and shopping for those that were missing. They planned what she would have to start first and when. He got her to use the recipe that she thought she had memorized, and make a pencil mark by each step as she did it. He reminded her to use a timer. When it went off and she couldn't remember what it was for, he had her look at the stove and figure it out. When dinner time got close and not everything was ready he pitched in to make a salad and got his father to set the table. After dinner she washed the dishes, he rinsed while they talked, and nothing hit the TV. This way of doing dinner was in her Zone of Recovery.
[If you are having trouble finding the Zone of Recovery for the person you are working with, read some of the cautions at the end of this handout.]
2) GOALS. It often helps to set specific goals for the activity at hand, so the person understands that they are working on recovery. For example, "Let's see if you can get all of this laundry folded in the next ten minutes without reminders." "Can you set the table without forgetting anything?" It also helps to tie little goals to bigger goals that may be more meaningful. "I want to see if you can find your way home from here so that maybe you can do it alone next time." "If you get these cookies to turn out well, next time we'll bake your special cake."
3) PROGRESS! The Zone of Recovery is a moving target, fortunately. Just because you have found the right level of help today doesn't mean the same thing will work next week. For people who are recovering rapidly, what was frustrating this week may be boring next week. Others may take months to make a little progress. Most will be somewhere in between. But this means you have to be alert to adjusting how much help you give to match the progress the person is making.
Once someone has learned to do something with some help, and then to do it independently, they usually need some practice doing it independently on several different days before they can do it easily and routinely. They need to consolidate or solidify their ability.
4) FADING CUES One way of adjusting the help you give to match the Zone of Recovery is through Fading Cues. This is when you gradually reduce how often and how specifically you tell someone what to do. For example, Josh was very impaired and needed to be told every step of brushing his teeth as he did it. ("Now get your toothbrush from the rack on your left... Now pick up the toothpaste from the counter on your left... Take the cap off... Squeeze some toothpaste onto your brush... Brush the left side of your teeth..."). As he recovered he needed less help. His father faded the cues like this over several weeks:
"Ahora caja su cepillo de dientes con su mano izquierda."
"You'll need your toothbrush."
"What do you need now?"
"Josh..." (or perhaps a facial expression that suggests he forgot something).
If it seems to you like this is a lot like what parents often do with their children over the course of the many years it takes them to learn to be independent, that's because it is. But with recovery from brain dysfunction the process often goes much faster. Another difference between childhood and brain injury is that people usually know more or less what to expect from children of different ages, but they often don't understand it when, for example, an adult needs to be reminded to look before crossing the street.
5) LEARNING WITHOUT MISTAKES. One of the ways in which people who have had brain injuries learn differently than children is that they often have more trouble correcting their mistakes. In fact, people with brain injuries often learn to repeat the mistakes they make better than they learn the corrections they are offered. For this reason, it is best to encourage learning without mistakes. How do you do that? By discouraging guessing, and by showing, cuing, and guiding the person in what to do. This is another way of thinking of the Zone of Recovery:
Zone of Recovery:
Do it for them.
Tell, but don't involve.
Person is passive.
Show, guide, cue.
Person and helper are active.
Helper is passive
The art of helping someone to learn without mistakes is involves giving just the right amount of help just in time to avoid mistakes. If you have doubts about how to do this, or about whether or not it applies to the person you are working with, ask the rehabilitation professional who is working with you.
D. RECOVERING EVERYDAY ACTIVITIES. People who have raised children successfully often have a fairly good sense of how to find the Zone of Recovery and when to Fade Cues. But not everyone does, and even if you do, sometimes you can't quite think of how to do it. There are other handouts that go with this one called Helping with Recovery in the Hospital, Recovery at Home and Recovery in the Community. They describe some of the ways different everyday activities can be broken down into parts or easier versions so that you can find the right Zone of Recovery to work in.
CAUTIONS What if things don't seem to be going right? What if the person is bored, or frustrated, or discouraged by everything, or won't try, or won't accept help? Several different things could be going on, and it is best to consult with someone from the rehabilitation team if you can. If that is not possible, consider these possibilities:
SOME PEOPLE WITH BRAIN DYSFUNCTION AREN'T YET FULLY READY TO REALIZE WHAT HAS HAPPENED TO THEM.
- They may resist doing something and say it is boring when they are really afraid of failing. If encouraging the person doesn't help, it may be better to change activities.
- They may think they can do something that they can't, or think they have done it well when they have not. The first thing to try is to let them know about their mistakes, gently and with love and support, but firmly. If this does not work, don't let it turn into a struggle. It is better to change the subject. The person may need more experiences of making mistakes, perhaps with different people or on different activities, before they will be ready to realize what has happened to their abilities.
SOME PEOPLE WITH BRAIN DYSFUNCTION ARE DEPRESSED AND DISCOURAGED.
- They may have tried and failed so much since their condition began that they are easily discouraged and don't want to try again. If the person may be depressed then that should be professionally evaluated and possibly treated. In addition, the person should be given things to do that are just a little bit challenging, and where success will be easy and frequent. You should be sure to recognize and praise those successes and build on them slowly, helping the person to see them as steps towards bigger goals.
SOME PEOPLE WITH BRAIN DYSFUNCTION WANT TO BE WAITED ON.
- They may see themselves as being sick and entitled to being waited on, or they may think that they just have to rest and wait for their bodies to heal. These kinds of ideas may work well when someone has the flu, or when the brain dysfunction first starts (if it comes from an accident or a stroke or an infection, for example), but once the danger is past, it is time to work actively on recovery. The rehabilitation stage of recovery is a time for strengthening muscles, strengthening skills, and getting "back into practice" at doing all kinds of things. It takes trying, repetition, practice, and gradually rebuilding skills, piece by piece and step by step. Try discussing these things with the person. Show them this handout, or read it to them. Don't let the discussion get into an argument. If these things don't help, you may want to discuss it with someone else, such as someone from the rehabilitation team, or another family member or friend.
- They may feel that if you don't wait on them it means you don't love them. Be sure you have other ways of showing your love besides waiting on the person.
SOME PEOPLE WITH BRAIN DYSFUNCTION DON'T WANT HELP.
- They may insist on doing it themselves. They may be right. Some people are very strong-willed and work very hard and successfully at their own recovery. With these people it may be best just to let them know you are available (and try hard not to say, "I told you so!" if they finally ask for help).
- They may think your help doesn't really help. They may be right. Some people know how to help well, and some just don't. It is a skill that comes with experience. If you help isn't helpful then you can ask the person what would be helpful, or observe someone whom the person finds helpful to see how to do it. Or you may get someone else to help who is better at it.
- They may not want to inconvenience you. Each family probably has it's own way of working with someone who doesn't want to be an inconvenience, but you might try saying something like, "I'm only doing what I know you would do for me if I were in your circumstances."
AUTONOMY. There is a limit to how much anyone can tolerate having every little daily activity turned into a therapeutic experience, and to how many hours a day someone can tolerate being a "therapist." One aspect of regaining autonomy after an injury is being free to choose one's own activities. Sometimes this may mean choosing dependence in some areas, just because it's easier. Sometimes it means being free to take risks and to fail.
Life at home and in the community can be a very powerful determiner of recovery from brain injury. How the period of recovery is spent will strongly affect how life will be after that. Professional rehabilitation can help and structuring life at home to facilitate recovery can also help. But ultimately, every family has to choose how it will readjust its balance of responsibilities and opportunities after one of its members experiences a brain injury.