When Chronic Illness Strikes a Family
THE Du Toit family’s happiness is infectious. Their warm love for one another is a delight to behold. Meeting them, you would never guess that they have endured so much hardship.
To begin with, when their first child, Michelle, was two, Braam and Ann learned that she had a chronic hereditary disease that causes debilitating muscle weakness.
“All of a sudden,” explains Ann, the mother, “you have to learn how to cope with a crippling chronic illness. You realize that family life will not be the same.”
But after another daughter and a son were born, further tragedy beset this family. One day when the three children were playing outside, the two girls came running into the house. “Mommy! Mommy!” they cried. “Come quickly. There’s something wrong with Neil!”
Rushing out, Ann saw three-year-old Neil’s head flopped helplessly to one side. He was unable to hold his head upright.
“The shock was terrible,” recalls Ann, “and the realization was instantaneous. I was heartsick that this healthy little boy would have to face the challenge of living with the same debilitating muscle weakness that his older sister had.”
“The joy of starting off with a healthy family,” says the father, Braam, “was soon overshadowed by some of the greatest challenges that we have ever had to face.”
Eventually Michelle, despite receiving the best of hospital treatment, died as a result of complications caused by her illness. She was just 14 years old at the time. Neil continues to battle the effects of his illness.
This raises the question, How do families such as the Du Toits cope with the challenges of having a chronically ill family member? In order to answer that question, let us analyze some of the ways families are affected by chronic illness.
Chronic Illness—A Family Affair
WHAT is chronic illness? Simply put, it is illness that lasts a long time. Additionally, one professor explains chronic illness as “an altered health state that will not be cured by a simple surgical procedure or a short course of medical therapy.” What makes chronic illness or its effects so challenging is not just the nature of the sickness and the treatment but that it has to be endured for so long.
Furthermore, the effects of chronic illness are seldom limited to just the patient. “Most people are part of a family,” states the book Motor Neurone Disease—A Family Affair, “and the shock and anxiety felt by you [the patient] will be shared by those close to you.” This is confirmed by a mother whose daughter had cancer. “Every member of the family is affected,” she says, “whether or not they show it or are aware of it.”
Of course, not everyone will be affected in the same way. However, if family members understand how chronic illness affects people in general, they will likely be better equipped to meet the specific challenges of their particular situation. In addition, if those outside the family circle—workmates, schoolmates, neighbors, friends—understand the impact of chronic illness, they will be better able to provide meaningful and empathetic support. With this in mind, let us look at some ways in which families might be affected by chronic illness.
Journey Through a Strange Land
A family’s experience with chronic illness could be likened to their taking a journey through a foreign land. While some things will be much the same as they are in the family’s homeland, other things will be unfamiliar or even radically different. When chronic illness afflicts a family member, many things will remain largely unchanged in the family’s life-style. However, some things will be very different.
For a start, the illness itself may impact on the family’s normal routine and force each family member to make adjustments in order to cope. This is confirmed by 14-year-old Helen, whose mother suffers from severe chronic depression. “We adjust our schedule to what Mom can or cannot do on any given day,” she says.
Even the therapy—which is intended to provide relief from the illness—may cause further disruption of the family’s new routine. Consider the example of Braam and Ann, mentioned in the preceding article. “We had to make major adjustments in our daily routine because of our childrens’ therapy,” says Braam. Ann explains: “We were going back and forth to the hospital every day. Then, in addition to that, the doctor recommended that we give the children six small meals a day to compensate for the dietary deficiencies caused by their disease. For me, it was a whole new way of cooking.” An even greater challenge was helping the children to do the prescribed muscle-strengthening exercises. “That,” recalls Ann, “was a daily battle of wills.”
As the patient adjusts to the discomfort—and sometimes the pain—of medical treatment and the scrutiny of medical personnel, he becomes increasingly dependent on the family for practical assistance and emotional support. As a result, not only do family members have to learn new skills to manage the physical care of the patient but they are all compelled to adjust their attitudes, emotions, life-styles, and routines.
Understandably, all these demands increasingly tax the family’s endurance. A mother whose daughter was in a hospital being treated for cancer confirms that it can “be more tiring than anyone else could ever imagine.”
“The continuous ups and downs of chronic illness present a threatening sense of uncertainty,” states Coping With Chronic Illness—Overcoming Powerlessness. Just when family members are adjusting to one set of circumstances, they may be confronted with altered and possibly more difficult ones. Symptoms may be erratic or may suddenly get worse, and therapy may fail to provide anticipated improvement. The treatment may have to be changed periodically or may result in unforeseen complications. As the patient becomes more dependent on the support that the bewildered family may be straining to supply, previously controlled emotions may suddenly explode.
The unpredictable nature of many illnesses and treatments inevitably raises such questions as: How long is this going to continue? How much worse will the illness get? How much more of this can we take? Terminal illness often prompts the ultimate uncertainty—“How long will it be before death strikes?”
The illness, treatment regimens, exhaustion, and uncertainty all combine to bring about another unexpected consequence.
Effects on Social Life
“I had to work through strong feelings of isolation and of being trapped,” explains Kathleen, whose husband suffered from chronic depression. “The situation was relentless,” she continues, “because we were never able to extend or accept invitations to socialize. Eventually, our social contacts were virtually nonexistent.” Like Kathleen, many end up having to cope with feelings of guilt for not being hospitable and not accepting invitations. Why does this happen?
The illness itself or the side effects of the treatment may make it difficult or even impossible to share in social events. The family and the patient may feel that the illness carries with it a social stigma, or they may fear that it will cause embarrassment. Depression may make the patient feel unworthy of previous friendships, or the family may simply not have the energy to socialize. For a variety of reasons, chronic illness can easily result in isolation and loneliness for the entire family.
Furthermore, not everyone will know what to say or how to react around a person with a disability. (See the box “How You Can Be Supportive,” on page 11.) “When your child is different from other children, many people tend to stare and make thoughtless remarks,” says Ann. “As it is, you tend to blame yourself for the illness, and their comments only add to your feelings of guilt.” What Ann says touches on something else that families are likely to experience.
Emotions That Wreak Havoc
“At the time of diagnosis, most families react with shock, disbelief, and denial,” states one researcher. “It is too much to bear.” Yes, it can be devastating to learn that a loved one has a life-threatening or debilitating illness. A family may feel that their hopes and dreams have been shattered, leaving them with an uncertain future and a deep feeling of loss and grief.
True, for many families that have seen prolonged, distressing symptoms in a family member without knowing the cause, the diagnosis may well provide a sense of relief. But some families may react differently to the diagnosis. A mother in South Africa admits: “It was so painful finally to be told what was wrong with our children that, frankly, I would rather not have heard the diagnosis.”
The book A Special Child in the Family—Living With Your Sick or Disabled Child explains that “it is natural for you to go through an emotional turmoil . . . as you adjust to this new reality. Sometimes your feelings may be so intense that you fear you cannot cope with them.” The author of the book, Diana Kimpton, whose two sons had cystic fibrosis, relates: “I was frightened of my own emotions and I needed to know that it was alright to feel so bad.”
It is not unusual for families to experience fear—fear of the unknown, fear of the illness, fear of the treatment, fear of pain, and fear of death. Children in particular may have many unspoken fears—especially if they are not given logical explanations for what is happening.
Anger too is very common. “Family members,” explains the South African magazine TLC, “may often become the scapegoats for the patient’s anger.” Family members, in turn, may feel angry—with the doctors for not detecting the problem sooner, with themselves for passing on a genetic defect, with the patient for not having looked after himself properly, with Satan the Devil for causing such suffering, or even with God, feeling that he is to blame for the illness. Guilt is another common reaction to chronic illness. “Virtually every parent or sibling of a child with cancer feels guilt,” states the book Children With Cancer—A Comprehensive Reference Guide for Parents.
This maelstrom of emotions often results—to a greater or lesser degree—in depression. “This is probably the most common reaction of all,” writes one researcher. “I have a file full of letters to prove it.”
Yes, Families Can Cope
On the bright side, many families have found that coping with the situation is not nearly as difficult as it first seemed. “The pictures produced by your imagination will be far worse than reality,” assures Diana Kimpton. From personal experience she found that “the future is rarely so black as you imagine it in those early days.” Be assured that other families have survived their journey through the strange land of chronic illness and that you can too. Many have found that simply knowing that others have coped has provided some relief and hope for them.
A family may logically wonder, though, ‘How can we cope?’ The next article will look at some of the ways families have coped with chronic illness.
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Families need to care for the patient and adjust their own attitudes, emotions, and life-style
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Both patient and family will experience strong emotions
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Do not despair. Other families have coped, and you can too
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Some Challenges of Chronic Illness
• Learning about the illness and how to cope with it
• Adjusting one’s life-style and daily routine
• Coping with changed social relationships
• Maintaining a sense of normality and control
• Grieving over losses that result from the illness
• Coping with difficult emotions
• Maintaining a positive outlook
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