Possibly the most common complaint is that the patient has given up. For one reason or another, they just refuse to do anything to help themself. Maybe the doctor has told them they are terminal. Maybe they have been told they are curable. The prognosis is not what seems to be the deciding factor. The supporter is frantic. She does not know what to do or how to get the patient to try to fight. She loves the patient and would do anything and has done everything. 

And right there we generally have the cause of the problem. You love the patient; you would do anything for the patient, and you have done everything for the patient. What has happened with the best of intentions is that you have taken away all control from the patient. 

You and others have talked with the doctors, you and others have planned the treatments, you and others have scheduled everything that needs being done, you and others do everything for the patient that the patient needs. This is not a question of intentions. There is no doubt that your intentions are the best. You love the patient and you want to show it by caring for them. But sit back and think about what kind of a message this is sending them.

By doing everything for them you are saying that they are not capable of doing it. You are saying that they are "sick." Your loved ones do not do these things for you. Why? Because they believe you are well. By your doing everything for them, they must believe that you believe they are in too bad a shape to do for themself. Possibly if the prognosis is good, you are sending a signal out that it is untrue. If it is bad, you are indicating that you agree. There is no hope.

You have taken their authority and responsibility away. They are a puppet to be manipulated by their medical team at your direction. They are unable to make decisions because they are denied the opportunity. Since they have no say, they have no reason to do anything. They are out of control. They have lost their reason for being, their will to live, their energy to fight.

So how do you correct the situation? It is difficult but not impossible. Put them back in charge. Stop doing for them that which they are capable of doing themself. Make them make the decisions that they can. Make them do for themself. They should read their own books, make their own phone calls, keep their own lists, schedule their own appointments, and do all their personal things that they are able and capable of doing themself and that, if they were healthy, they would normally be doing for themself.

Treat them as a "person with cancer" rather than a patient, enabling them to maintain control and participate in their health care as opposed to being something health care is being done to.

Granted this is difficult. You want to show your love and caring. It is probably comparable to giving candy to an overweight baby. For the moment, it might seem like the proper thing to do to make the infant happy. In the long run, there is no doubt that the infant is far better off without the unneeded candy. Likewise, for the moment your doing everything might seem like the best or easiest way. In the long run, the patient is far better off, happier, and will appreciate your love and caring more by being allowed to do for themself.

Once they are back in control, you can determine a happy balance between your doing and their doing for themself. There are many ways you can show your devotion besides usurping their authority and control. Suggest, discuss, reason, even disagree. Like a child wants a parent to express authority, a patient wants an individual to display their concern and caring by actions other than that of being a servant. 

You can help the seriously ill patient ward off feelings of helplessness and abandonment if you continue to share your activities, goals and dreams as before. Few of us who are well know what it is like to be placed in a position of dependency. Cancer strikes one's self concept as a whole person as well as threatening one's life. Feelings of helplessness are real enough when one is flat on one's back. Make every effort not to compound them by ignoring the wishes of the patient, or worse, by trying to make an invalid of a person who is up and around. 

When I was in the hospital recovering from surgery, my wife would visit me all day and then drive back to the hotel room at night. I asked my doctor if I might walk her to the car and he gave me permission on the condition that I would not use the elevator. I had to walk down the 2 flights of steps and back up! He knew the value of getting me to do for myself, plus the exercise. 

I got plenty of visits from my family, companionship with every meal, lots of back rubs and dozens of cards, but I had to make my own phone calls when I felt up to it, be in on all the discussions and decisions about my treatment and do whatever else I always did for myself.

Some patients do not want to accept help and burden their family and friends with such acts as child care, cooking, shopping, laundry and transportation. Convince them that you are doing this because you love them and you choose to do these things that they are incapable of doing at the present time. Reassure them that they can resume these acts when they are capable.

Friends and families are often most loving, supportive and caring when patients are weak and helpless. They begin to remove these rewards when the patient regains health. It is imperative that patients be encouraged to do what they can for themselves and receive love, support and affection for independence, not weakness. If all the rewards come from being weak, patients have a stake in illness and less incentive for getting well. 

Five rules to accomplish this are:

1. Encourage patients to take care of themselves. Many family members rush in and take over with such comments as, "You're sick. You shouldn't be up and around like that." The family should comment instead on their loved one's strength: "I think it is great the way you are taking care of yourself."

2. Comment on progress. Observe signs of improvement and let the patient know how pleased you are.

3. Spend time with the patient in activities unrelated to the cancer. Having cancer does not require that you and the patient stop enjoying yourselves. On the contrary, the more enjoyable life is, the greater the incentive is to stay alive.

4. Continue to spend time with the patient as they get well. Offer continued attention and support during recovery.

5. Treat the patient as if you expect them to live. You need not believe they will recover; you need only believe they can recover. This is asking a great deal when families and patients have received all the societal programming that says cancer equals death. But your beliefs matter enormously. The ideal is to have a positive belief that the treatments are a strong and powerful ally and that the patient can get well.

Give them the gift of hope. Restrain yourself, even though it hurts. Let them make their own mistakes. Give them the gift of getting back in charge. Pulling one's own weight is good exercise.

Chapter 4, Knowledge