FAQ 1: Have you any advice for the spouse of a new laryngectomee?
The following is a chapter out of my Dad's book, "Self Help for the Laryngectomee."
Advice to the Spouse
by Marshall J. Duguay, Ph.D.
Emeritus Professor, Communication Disorders
State University College at Buffalo, N.Y.
Someone very near and very dear to you has undergone a serious operation to deal with a serious disease. Now that surgery has been completed, he is able to return to you because of three things: (1) the skill and ability of his surgeon and nurses, (2) the advanced methods and techniques of modern medicine, and (3) his own will and determination.
Nevertheless, he still has one more challenge to meet and to overcome. This is the challenge of developing a new voice and returning to his rightful place in the family and in society. Although you were not able to help in the physical victory over disease, you can help in the psychological victory needed to complete the job of rehabilitation. Do not underestimate your role. You can be of immeasurable help to your spouse. In fact, you can be the real "spice" to your spouse's adjustment.
First of all you must realize that the laryngectomee experiences both physical and emotional changes to which he must adjust. Generally, time is needed for this adjustment. Time requires patience - yours as well as his. You can't expect him to be exactly the same person that he was before his operation. For one thing, he breathes from a different place and for another he may not be able to talk - yet. Have you ever tried to sit with three or four people and write all of your questions, answers, requests, etc.? Try it. You'll find that you can't possibly keep up. You'll get far behind in the "conversation." Imagine the FEELINGS.
Suppose you had your voice box removed and you hit your finger with a hammer or that you wanted to (God Forbid) yell at your husband for something he did or didn't or should do and you couldn't yell or shout or even talk. Imagine the feelings. They are there alright but they can't get out at least not with sound. They are there and they need to come out some way. So he claps his hands, snaps his fingers at you, slams on the table, throws things, sulks like a spoiled child, or bangs the door. Sound familiar? He may not have the words but he is sure "telling You" something by his actions. Please understand, he has to express his feelings and, for now, this is his only way. He doesn't like doing these things anymore than you like him doing them. Understand his need to express himself and try to understand his anger may not be directed at you but at himself and his inability to express himself. Talk to him and tell him that you wish he would do "thus and so" rather than "this or that." Don't forget this guy loves you too and wants to make you happy. Communicate!
No one wants to feel rejected. There's that word "feel" again. It's an important word. Be aware of your feelings and your actions. Try to always remember the old saying, "Actions speak louder than words." When he gets undressed for bed at night or changes his stoma cover or undershirt and you see his stoma, do you react? Consciously? Unconsciously? You're not likely to say "ugh" but do your eyes? Your expression? And when he gets into bed with you, do your actions or lack of actions indicate rejection? Try to act the same way toward him as you did before his operation. You really can't fake feelings.
Also, do uninformed friends and relatives think they might "catch" something from him? Let them know loudly and clearly that medical science has failed to show that Cancer is contagious. There wouldn't be many doctors and nurses left if that were true, would there? If they still can't accept the fact that Cancer is not contagious, respect their right to feel that way but don't let them come around and make him feel that he is some kind of "untouchable."
Sometimes you can help guard against the reactions of others by helping him to be more attentive to his personal appearance. Let's face it, no one wants to look at a hole in someone's neck. It is very easy to wear a covering at all times over the tracheal stoma, Bibs, tee shirts, shirts and ties or sport shirts buttoned at the neck serve as excellent covers for the stoma. Not only does this look better but it serves as protection against dust and dirt and it also helps keep the sneeze or cough from "spraying out." Help him to be sensitive to others and sensible about his personal appearance.
Keep this concept of rejection in mind and look for and be aware of other subtle ways that you or others might be using to make him feel rejected. Don't forget feelings are caught not taught.
The need for attention to personal appearance has been mentioned and your role as an encourager, not a nag, is more important not than at any other time in the past. Also you need to encourage him to do things for himself. The whole idea of rehabilitation is to restore him to his former capacity. Don't ever forget, he is not a person who is actually handicapped, but only a person who has a difficulty to overcome. And don't let him forget that either. It may be easier and quicker for you to take out and change his trachea tube or to clean the crusts away from his stoma, but unless you really and truly have a need to do this, let him. It is his tube and his stoma and it is he who needs to feel independent. Don't baby him now if you didn't baby him before. This is not to say don't help him, but it is to say don't baby him. There is a difference and it makes a difference.
If you do notice or if he calls attention to a physical problem, such as a lump in his neck, difficulty with breathing, an unusual amount of blood coughed up (a little after strenuous coughing is normal), pain, etc., see to it that he gets back to the medical expert, his doctor. Don't play nurse; get the advice of the specialist. Phone calls are only a dime (at least they were when this was written).
How can you help someone regain the precious gift of speech that has been temporarily lost? Before suggesting ways in which you can help, first remember that there are several different ways of speaking. The important thing, and an idea that you must try never to forget, is that he learns to talk in a way that allows him to meet his speech needs. If he can talk, is satisfied with his way of talking, and uses his new way of talking successfully, then the goal of speaking again has been realized. The earlier statement· " several different ways of talking," refers to the use of artificial larynges and devices in speaking. Research has clearly shown that approximately one third of Laryngectomees do not develop a serviceable esophageal voice. Therefore if they want to talk, they must learn to use an artificial device. It should be quickly added that this inability to learn esophageal speech is often no fault of their own. Many times the nature and extent of the surgery influences vital structures and effects their function in developing esophageal speech. Your acceptance of his use of an "artificial speaker", if that is what he wishes (or needs), is extremely important. He should not be made to feel self-conscious or that he is a failure because he can't learn to talk with esophageal speech. It just isn't so. Many cannot learn for physical, emotional, or educational reasons. You and your acceptance and understanding of this fact are extremely important to him.
If he tries to learn esophageal speech and he should be encouraged to try if his doctor and speech clinician feel he is a good candidate, don't expect him to regain his speech overnight. This is a new way of speaking; a new motor skill. It requires practice and time. It is going to take him a few weeks, perhaps a few months but he can learn. His new voice may not be as melodious a voice or as loud a voice as it was before his operation, but it can be a practical voice and one that will allow him to communicate and carry on normal speech activities.
Your patience and understanding during this crucial time, while he is learning a new way of talking, is of great importance. Also, do not forget the two magic words, praise and encouragement; they can work wonders. Avoid anticipating his needs, requests, or even his words. It may be easier for you to say a word for him, but it is far wiser to give him the chance to say it himself. It may take longer for him to say the word, but he will be grateful for your few moments of silent understanding. Give him the opportunity to speak.
Another thing, don't nod and pretend you understand when he says something that you really don't understand. Be honest. Tell him you didn't understand what he said and ask him to tell you again. Also, if you have a hearing loss, you are going to have trouble hearing him because his voice is not as loud as it was before and it probably never will be. Don't be vain! Get a hearing evaluation from an otologist or an audiologist (not a hearing aid dealer) for it could be that you might benefit from a hearing aid. You might be the problem in a situation like this, not him.
Your interest in his speech.
Another important way for you to help is by showing interest, not just curiosity, but genuine and sincere interest. Show him that you are interested in his progress and in his homework. It may seem rather monotonous for you to listen to him saying the simple words in his lesson plan; nevertheless, to him these simple sounds are more glorious than reciting the Gettysburg Address, for he is performing a miracle, talking without vocal cords.
Remind him to practice and to be faithful to his homework assignments, but do not nag him to practice. Short but frequent practice periods are far better than long and infrequent sessions. It is not how long he practices but how often that makes the difference.
Many times an individual learning to talk again forgets that he is just learning, and tries to say too many words at a time and may "run out of sound." He must learn to say a few words at a time. As his speech production improves, he will be able to say words more quickly. Eventually he may talk almost as rapidly as he formerly did; therefore he must learn to pace his speech and to talk a little bit slower. Again be very careful to remind, not nag.
You can be a big help to him with his speaking, especially with other people. For one thing, you can "get the floor" for him. He may be reluctant or bashful about speaking in a situation even with family or friends but if you say something to him like "What was the name of that restaurant, Bill?" or, "How many children do the Jones' have, Bill?", or " What kind of fish did you catch, Bill?" (that's if his name is Bill), he is automatically brought into the conversation in an important way. As he uses speech successfully and gets praised and rewarded for using it, chances are he will do more and more.
Continue usual activities
The mere fact that he has had an operation is no reason to allow him to become a hermit. He should be encouraged to continue his social life with fiends and relatives just as he did before. If they are really friends, his temporary speech difficulty will not make any difference. Do not force him into social situations or into large groups or crowds until he is ready to accept them. Sometimes it is better to begin in a small way with a few friends in private gatherings. His success here will give him the confidence he needs to move on to larger and more varied situations. Many times his children, and especially his grandchildren, can provide some of the successful experiences he needs to feel in gaining the confidence required to face the world once again. Kids are just great. They are honest, straightforward, matter-of-fact, have a healthy curiosity about the operation, and are not embarrassed by grandpa and his new way of speaking. It is not uncommon for them to even try imitating his way of speaking. Their complete acceptance is a beautiful thing and can help him to accept himself if he is having difficulty in this area.
If there is a local "New Voice" or "Lost Chord" club, try to get him to attend their meetings. He can't help but be inspired when he sees the tremendous things that others who have had the same experience are doing. If he won't go, give someone from the Club a call. A club member will be glad to "drop by" and visit him and give him the encouragement he may need to get going.
Time is an important factor. It can work wonders for both of you. The longer he lives with his difference, usually the easier it becomes. He experiences new things, finds out they are really not that bad, and thereby gains insight as well as confidence in himself. Just as one needs a period of adjustment to get used to glasses, a hearing aid, a new set of teeth, or even a new suit or dress, one needs time to get used to a second life, a second voice.
If he is having an especially difficult time learning to adjust and accept his situation and you feel that a real problem exists, by all means get him to accept professional help. Your doctor or your speech clinician can furnish you with the names of trained, professional counselors who have the skills and ability to deal with matters such as these. Neither you nor he should feel any shame or embarrassment for seeking professional help. In fact, you are to be congratulated. After all, you went to a medical specialist for a medical problem. Why not go to a counseling specialist for a counseling and adjustment problem? You may need to help convince him of this need since he may be "too close to the forest to see the trees."
Surprised to see that word as a heading to this section? You shouldn't be. Drinking has come to be an accepted behavior in our American culture. Drinking has also been liked to smoking, and the two, to laryngeal Cancer. There's nothing wrong with drinking unless it is overdone. When you can't talk, can't work, can't express yourself in the same way you usually did, and feel a little sorry for yourself, it is easy to turn to drink. It doesn't help. It never solved any problems for anyone. It is merely an escape and a very temporary one that has to be started all over the next day. It can be especially dangerous to a laryngectomee if overdone. He breathes differently now and must maintain an open airway in his neck. If he drinks too much there may be a tendency to let down his guard and get careless. The result could be fatal. Also, don't believe the line that " a few drinks help me to talk better." Speaking is a motor act and requires precise motor control, especially esophageal speech. Think of what happens to a normal speaker's speech when they have a few too many. They shay lottsa shrange wordge.
Therefore, if drinking is a problem, get help. Your doctor, clergyman or the local chapter of AA can certainly help you with this serious problem.
There are so many things that the two of you have been through together. Births, sickness, sorrows of all sorts, deaths in the family, financial problems, etc., but you have lived through them all. There have been the many good times too. That's what life consists of, the good and the bad. Together you've weathered and overcome problems before; you can and will overcome this one as well.
Remember, in the final analysis, the only one who can help the laryngectomee return to a normal life once again is the laryngectomee himself. As professionals we can only show him the way; you, his family and friends, can give him the incentive and encouragement he so desperately needs, for you are the most important people in his world.
For your convenience and frequent referral, a list of do's and don'ts follows. This is a summary of the main ideas in this chapter designed to aid the family and friends of the laryngectomee.