How Families Cope With Chronic Illness
COPING can be defined as “the ability to deal effectively with and handle the stresses to which one is subjected.” (Taber’s Cyclopedic Medical Dictionary) It involves facing the problems of chronic illness in such a way that you are able to enjoy a measure of control and peace of mind. And in view of the fact that chronic illness is a family affair, the loving and loyal support of each member of the family is needed for the family to cope successfully. Let us consider some of the ways families cope with chronic illness.
The Value of Knowledge
It may not be possible to cure the disability, but knowing how to cope can minimize the mental and emotional impact of illness. This is in harmony with an ancient proverb that notes: “A man of knowledge is reinforcing power.” (Proverbs 24:5) How can a family gain knowledge about how to cope?
The first step is to find a communicative and helpful doctor, one who is willing to take the time to explain everything carefully to the patient and the family. “The ideal doctor,” observes the book A Special Child in the Family, “cares about the whole family as well as having all the necessary medical skills.”
The next step is to keep asking specific questions until you understand the situation as well as you can. Remember, however, that when you are with the doctor, it is easy to get flustered and forget what you wanted to ask. One helpful suggestion is to write down questions in advance. In particular, you may want to know what to expect from the illness and the treatment and what to do about it.—See the box “Questions That a Family Can Ask a Doctor.”
It is particularly important to provide adequate information to the siblings of a chronically ill child. “Explain what is wrong from the earliest days,” recommends one mother. “They can easily feel pushed out of the family circle if they do not understand what is happening.”
Some families have also been able to find useful information by doing research in a local library, at a bookstore, or on the Internet—very often obtaining detailed information on specific illnesses.
Preserving a Reasonable Quality of Life
It is only natural that family members should want to maintain a reasonable quality of life for the patient. Take, for example, Neil du Toit, mentioned in the first article. He still gets frustrated by the debilitating effects of his disease. Nevertheless, he spends about 70 hours a month doing what he enjoys doing most—talking to people in his community about his Bible-based hope. “It also gives me inner satisfaction,” he says, “to give Bible instruction in the congregation.”
Quality of life also includes the ability to show and receive love, to enjoy pleasurable activities, and to sustain hope. Patients would still like to enjoy life to the extent that their illness and treatment will allow. A father whose family has coped with illness for over 25 years explains: “We love the outdoors, but because of my son’s limitations, we can’t go on hikes. So we do it differently. We go to outdoor places that don’t require strenuous activities.”
Yes, patients retain abilities that enable them to derive a degree of satisfaction from life. Depending on the nature of the illness, many can still appreciate beautiful sights and sounds. The more they can feel in control of various aspects of their life, the more likely they are to have a reasonable quality of life.
Handling Difficult Emotions
An essential part of coping involves learning how to control harmful emotions. One of these is anger. The Bible acknowledges that a person might have cause to be upset. However, it also urges us to be “slow to anger.” (Proverbs 14:29) Why is it wise to do so? According to one reference work, anger “can eat away at you and make you bitter or lead you to say hurtful things you later regret.” Even one outburst of anger can cause damage that may take a long time to repair.
The Bible recommends: “Let the sun not set with you in a provoked state.” (Ephesians 4:26) Obviously, we can do nothing to delay the setting of the sun. But we can take steps to settle our “provoked state” speedily so that we do not continue to do damage to ourselves and others. And you are likely to handle a situation far better once you have calmed down.
Like any family, yours will no doubt experience highs and lows. Many find that they cope better when they can confide in one another or in someone else who is compassionate and empathetic. This was certainly Kathleen’s experience. She first cared for her mother, who had cancer, and later for her husband, who suffered from chronic depression and eventually Alzheimer’s disease. She admits: “It became a source of relief and comfort for me when I could speak with understanding friends.” Rosemary, who cared for her mother for two years, agrees. “Talking to an honest friend,” she says, “helped me keep my balance.”
Do not be surprised, though, if you cannot hold back the tears as you talk. “Crying releases the tensions and pain, and helps you work through your grief,” says the book A Special Child in the Family.*
Maintain a Positive Attitude
“Your will to live can sustain you when you are sick,” wrote wise King Solomon. (Proverbs 18:14, Today’s English Version) Modern researchers have noted that patients’ expectations—whether negative or positive—often tend to influence the outcome of their treatment. How, though, can a family remain optimistic in the face of a long-term illness?
While not ignoring the illness, families cope better when they focus on things that they are still able to do. “The situation can make you totally negative,” admits one father, “but you have to realize that you still have so much. You still have life, one another, and your friends.”
Although chronic illness is not to be taken lightly, a healthy sense of humor helps to prevent a spirit of pessimism. The Du Toit’s ready sense of humor illustrates the point. Collette, Neil du Toit’s youngest sister, explains: “Because we have learned to cope with certain situations, we can laugh at things that happen to us that might seem very upsetting to others. But doing so really helps to relieve the tension.” The Bible assures us that “a heart that is joyful does good as a curer.”—Proverbs 17:22.
All-Important Spiritual Values
A vital part of spiritual well-being for true Christians involves ‘letting their petitions be made known to God by prayer and supplication.’ The result is as promised in the Bible: “The peace of God that excels all thought will guard your hearts and your mental powers.” (Philippians 4:6, 7) After almost 30 years of caring for two chronically ill children, one mother states: “We have learned that Jehovah does help you to cope. He really does sustain you.”
Furthermore, many are fortified by Biblical promises of a paradise earth free of pain and suffering. (Revelation 21:3, 4) “Because of the chronic illnesses our family has faced,” says Braam, “we find added meaning in God’s promise that ‘the lame one will climb up just as a stag does, and the tongue of the speechless one will cry out in gladness.’” Like so many others, the Du Toits eagerly yearn for the time in Paradise when “no resident will say: ‘I am sick.’”—Isaiah 33:24; 35:6.
Take heart. The pain and suffering weighing mankind down is in itself part of the evidence that better conditions are imminent. (Luke 21:7, 10, 11) In the meantime, though, scores of caregivers and patients can testify that Jehovah is, indeed, “the Father of tender mercies and the God of all comfort, who comforts us in all our tribulation.”—2 Corinthians 1:3, 4.
For a more detailed discussion on how to cope with the emotional impact of illness, please see “Caregiving—Meeting the Challenge,” in the Awake! of February 8, 1997, pages 3-13.
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Questions That a Family Can Ask a Doctor
• How will the illness develop, and with what outcome?
• What symptoms will there be, and how can they be controlled?
• What alternatives are there for treatment?
• What are the possible side effects, risks, and benefits of the different treatments?
• What can be done to improve the situation, and what should be avoided?
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How You Can Be Supportive
Some people may refrain from visiting or offering help because they do not know what to say or how to handle the situation. Others may tend to be overbearing and, by imposing what they consider to be helpful, may add to the pressure a family is feeling. How, then, might one be supportive of those having a chronically ill family member without interfering with their privacy?
Listen with empathy. “Be swift about hearing,” says James 1:19. Show concern by being a good listener and allowing family members to unburden themselves if they want to speak. They may be more inclined to do so if they sense that you have “fellow feeling.” (1 Peter 3:8) Keep in mind, though, that no two individuals or families respond to chronic illness in the same way. Therefore, “don’t offer advice unless you really know all about the disease or situation,” says Kathleen, who cared for her mother and later her chronically ill husband. (Proverbs 10:19) And remember, even if you do have some knowledge of the subject, the patient and the family may decide not to seek out or accept your advice.
Offer practical help. While being sensitive to the family’s need for privacy, be available for them when they really need you. (1 Corinthians 10:24) Braam, who has been quoted throughout this series, says: “The help of our Christian friends was tremendous. For example, when we slept over at the hospital because of Michelle’s critical condition, we always had between four and six of our friends sitting with us right through the night. Whenever we needed help, it was there.” Braam’s wife, Ann, adds: “It was a bitterly cold winter, and for two weeks we were given a different soup every day. We were nourished by hot soup and plenty of warm love.”
Pray with them. At times, there may be little or nothing of a practical nature that you can do. However, few things are as encouraging as sharing an upbuilding Scriptural thought or a heartfelt prayer with patients and their families. (James 5:16) “Never underestimate the power of praying for—and with—the chronically sick ones and their families,” says 18-year-old Nicolas, whose mother suffers from chronic depression.
Yes, the right kind of support can do much to help families cope with the stress of chronic illness. The Bible puts it this way: “A friend is a loving companion at all times, and a brother is born to share troubles.”—Proverbs 17:17, The New English Bible.
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When the Illness Is Terminal
Some families might be reluctant to discuss the impending death of a terminally ill loved one. However, the book Caring—How to Cope states that “if you have some idea of what to expect and what you should do, it may help ease feelings of panic.” Although specific steps will vary depending on local laws and customs, here are some suggestions that the family might consider when nursing a terminally ill loved one at home.
Ahead of Time
1. Ask the doctor what to expect in the final days and hours and what must be done if death occurs at night.
2. Make a list of those who will need to be informed of the death.
3. Consider funeral options:
• What are the patient’s wishes?
• Burial or cremation? Compare the costs and services of different funeral directors.
• When should the funeral be held? Allow time for travel arrangements to be made.
• Who will conduct the funeral or memorial service?
• Where will it be held?
4. Even if sedated, the patient may still be aware of what is being said and done around him. Be careful not to say anything in front of him that you do not want him to hear. You may want to reassure him with calm talk and by holding his hand.
When the Loved One Dies
Here are some things that others can do to assist the family:
1. Allow the family reasonable time to be alone with the deceased so that they can start to come to terms with the death.
2. Pray with the family.
3. When the family are ready, they might appreciate help in notifying the following:
• The doctor to certify death and provide a death certificate.
• A funeral director, a mortuary, or a crematory, to care for the body.
• Relatives and friends. (You might tactfully say something like this: “I am phoning in connection with [patient’s name]. I am sorry to say that I have bad news. As you know, he has battled with [illness] for some time, and he died [when and where].)
• A newspaper office to place a death notice if desired.
4. The family may want to take someone with them to help them finalize funeral arrangements.
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Family members should do their best to maintain a reasonable quality of life
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Praying with the family can help them to cope