The Challenge of Caregiving
“AT TIMES I wished I could escape from the situation. But he needed me more than ever. At times I felt very alone.”—Jeanny, who nursed her 29-year-old husband for 18 months before he died of a brain tumor.*
“There are times when I feel irritated with Mom, and then I get disgusted with myself. I feel like a failure when I do not cope well.”—Rose, 59, who cared for her frail 90-year-old mother, who had become bedridden.
The news of terminal or chronic illness can be devastating to family and friends. “At the time of diagnosis every family feels alone. They may not know anyone else who has had this problem,” says Jeanne Munn Bracken, in Children With Cancer. They are also often “numb and disbelieving,” as Elsa was when she found out that her 36-year-old close friend Betty had cancer. Sue, whose father was ill, felt “a sick, hollow feeling” in her stomach when she finally realized that her father was dying of cancer.
Family members and friends may suddenly find themselves thrust into the role of caregivers—providing for the physical and emotional needs of the one who is ill. They may have to prepare nourishing meals, supervise medication, arrange transport to the doctor, entertain the patient’s visitors, write letters for the patient, and much, much more. Often such activities are crammed into an already busy schedule.
As the patient’s condition deteriorates, however, the work of caregiving becomes even more demanding. What might this include? “Everything!” exclaims Elsa about her bedridden friend Betty. “Washing and feeding her, helping her when she vomits, emptying her urine bags.” Kathy, despite holding down a full-time job, had to care for her ailing mother. Sue, mentioned earlier, tells of “taking and recording [her father’s] temperature every half hour, sponging him down when the temperature was rising, and changing his clothes and bed linen every few hours.”
The quality of the care that the patient receives will depend to a large extent on the well-being of those providing the care. Yet, the feelings and needs of those who look after the sick are often overlooked. If caregiving merely resulted in sore backs and strained shoulders, it would be difficult enough. But, as most caregivers will confirm, the care is provided at enormous emotional cost.
“It Was Very Embarrassing”
“Studies frequently describe the distress resulting from the [patient’s] wandering, embarrassing behavior, and verbal outbursts,” reports The Journals of Gerontology. For example, Gillian describes what happened after a friend at a Christian meeting asked to meet her aged mother. “Mother just looked blank and did not respond,” recalls Gillian sadly. “It was very embarrassing and brought tears to my eyes.”
“It is one of the most difficult things to cope with,” says Joan, whose husband has dementia. “It makes him a little insensitive to etiquette,” she explains. “When we are dining out with others, he sometimes goes to other tables in the dining room, tastes the jam, and puts the used spoon back into the jam dish. When we visit neighbors, he may spit on the garden pathway. It’s very difficult to rid myself of the thought that others are probably talking about these habits and perhaps regard him as sadly lacking in manners. I tend to curl up inside.”
“I Was Afraid That If We Were Careless . . .”
Caring for a seriously ill loved one can be a very frightening experience. The caregiver may be afraid of what will happen as the illness advances—perhaps even afraid of the death of his loved one. He may also fear that he will not have the strength or ability to meet the patient’s needs.
Elsa describes the reason for her fear this way: “I was afraid that I might hurt Betty physically, thereby adding to her suffering, or that I would do something that might shorten her life.”
Sometimes the patient’s fears become the caregiver’s fears. “My father had a great fear of choking and would sometimes get panicky,” confided Sue. “I was afraid that if we were careless, he would choke and thus experience his greatest fear.”
“You May Grieve for the Way They Used to Be”
“Grief is a normal experience for people coping with a loved one who has a chronic illness,” states Caring for the Person With Dementia. “As the patient’s illness progresses, you may experience the loss of a companion and a relationship which was important to you. You may grieve for the way they used to be.”
Jennifer describes how her family was affected by her mother’s steadily declining health: “We felt hurt. We missed her vivacious conversation. We were very saddened.” Gillian explains: “I didn’t want my mother to die, and I didn’t want her to suffer. I cried and cried.”
“I Felt Rejected, Angry”
A caregiver may wonder: ‘Why did this have to happen to me? Why don’t others help? Can’t they see I’m not coping well? Can’t the patient be more cooperative?’ At times, the caregiver may feel very angry about what seem to be growing and unfair demands made on him by the patient and by other family members. Rose, mentioned in the introduction, says: “I am more often angry with myself—in my head. But Mom says it shows on my face.”
The one providing the care may bear the brunt of the patient’s own frustrations and anger. In the book Living With Cancer, Dr. Ernest Rosenbaum explains that some patients “may at times experience rage and depression that will seek as their target the nearest available person . . . This anger is usually manifested as irritation over trivial matters that in normal times would not even concern the patient.” Understandably, this can put added strain on the frayed nerves of the loved ones who are doing their best to look after the patient.
Maria, for example, did commendable work nursing her dying friend. On occasion, though, her friend seemed oversensitive and jumped to wrong conclusions. “She would be very cutting and rude, embarrassing loved ones,” Maria explains. How did this affect Maria? “At the time, one seems to ‘understand’ the patient. But on thinking it over later, I felt rejected, angry, unsure—and not inclined to show needed love.”
A study published in The Journals of Gerontology concluded: “Anger has the potential to mount to a high level in caregiving situations [and] sometimes results in actual or contemplated violence.” The researchers found that almost 1 out of every 5 caregivers feared he might become violent. And more than 1 in 20 actually did get violent with his patient.
“I Feel Guilty”
Many caregivers are plagued by feelings of guilt. Sometimes the guilt comes on the heels of anger—that is, they feel guilty because they feel angry at times. Such emotions may drain them to the point that they feel they can’t go on.
In some instances, there is no alternative but to have the patient cared for in an institution or a hospital. This can be a traumatic decision that can wreak havoc with a caregiver’s emotions. “When finally forced to take Mother to a home, I felt I was betraying her, discarding her,” says Jeanne.
Whether the patient is hospitalized or not, his loved ones may feel guilty that they are not doing enough for him. Said Elsa: “I often felt bad that my time was so limited. Sometimes my friend just wouldn’t let me go.” There may also be concern over neglect of other family responsibilities, particularly if the caregiver spends a great deal of time at the hospital or must work longer hours to help pay for mounting bills. “I have to work to help with the expenses,” lamented one mother, “yet I feel guilty because I can’t be at home for my children.”
Obviously, caregivers have a desperate need for support, especially after the death of the one cared for. “My most critical responsibility [after a patient’s death] . . . is to alleviate feelings of guilt in the caregiver, which often go unspoken,” says Dr. Fredrick Sherman, of Huntington, New York.
If these feelings remain unspoken, they could be damaging to both the caregiver and the patient. What, then, can those providing care do to cope with these feelings? And what can others—family members and friends—do to help them?
Some of the names have been changed.
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Don’t Take Them for Granted!
“WE KNOW that 80% of the caregiving to the elderly that takes place in the home is done by women,” says Myrna I. Lewis, assistant professor in the department of community medicine at Mount Sinai Medical School, New York.
One study of women caregivers, published in The Journals of Gerontology,* showed that 61 percent of the women reported receiving no help from family or friends. And more than half (57.6 percent) said they did not receive enough emotional support from their husbands. In Children With Cancer, Jeanne Munn Bracken points out that while the mother may be bearing much of the caregiving burden, “the father may well be retreating into his work.”
However, there is a significant proportion of caregiving done by men, says Dr. Lewis. For example, husbands with wives who have Alzheimer’s disease are a fairly large group. And they are certainly not immune to the stresses of caring for a sick loved one. “These men are perhaps the most vulnerable of all,” Lewis continues, “because they are usually older than their wives and may be in poor health themselves. . . . Most of them are not trained in the practical aspects of caregiving.”
Families need to guard against the tendency to burden one member who seems to handle the challenge well. “Often it is a particular member of a family who becomes a carer, sometimes several times over,” states the book Care for the Carer. “A high proportion of these are women who are already growing older themselves. . . . Women are also generally seen as the ‘natural’ carers . . . , but families and friends should never take this for granted.”
Gerontology is defined as “a branch of knowledge dealing with aging and the problems of the aged.”
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Caregivers need support in coping with feelings of guilt and anger
How to Deal With Feelings
ARE you currently caring for a seriously ill loved one? If so, you may be experiencing some confusing and frightening emotions. What can you do? Consider the feelings that some caregivers struggle with and the practical suggestions that have helped them cope.
Embarrassment. Occasionally, the behavior of a person who is ill may embarrass you in front of others. But explaining the nature of your loved one’s illness to friends and neighbors may help them to understand and may also move them to show “fellow feeling” and patience. (1 Peter 3:8) If possible, talk to other families who are in a situation similar to yours. You may feel less embarrassed as you exchange experiences. Sue explains what helped her: “I felt such pity for my father—it eclipsed any feelings of embarrassment. And his sense of humor also helped.” Yes, a sense of humor—on the part of the patient and those who care for him—is a marvelous tool to ease jangled nerves.—Compare Ecclesiastes 3:4.
Fear. Ignorance about the disease can be terribly frightening. If possible, seek professional advice on what to expect as the illness progresses. Learn how to provide care under those circumstances. For Elsa, one of the most important factors in coping with her fear was talking with other caregivers and the hospice nurses about what to expect as the patient’s condition deteriorated. Jeanny advises: “Confront and control your fears. Fear of what might happen is often worse than the reality.” Dr. Ernest Rosenbaum recommends that whatever causes them, your fears should “be talked about as they arise.”—Compare Proverbs 15:22.
Grief. It is not easy to deal with grief, particularly in the caregiving situation. You may grieve over the loss of companionship, especially if your sick loved one can no longer talk, understand clearly, or recognize you. Such feelings may not be readily understood by others. Talking about your grief to an understanding friend who will listen patiently and sympathetically can bring much-needed relief.—Proverbs 17:17.
Anger and Frustration. These are normal responses to caring for a seriously ill person whose behavior may be difficult at times. (Compare Ephesians 4:26.) Realize that it is often the disease, not the patient, that is responsible for distressing behavior. Lucy recalls: “When I really got angry, I would end up in tears. Then I would try to remind myself of the patient’s condition and illness. I knew that the patient needed my help. That would help me carry on.” Such insight may ‘slow down your anger.’—Proverbs 14:29; 19:11.
Guilt. Feelings of guilt are common among caregivers. Be assured, though, that you are performing an essential but very difficult job. Accept the fact that you will not always react perfectly in word or in deed. The Bible reminds us: “We all stumble many times. If anyone does not stumble in word, this one is a perfect man, able to bridle also his whole body.” (James 3:2; Romans 3:23) Do not allow feelings of guilt to prevent you from taking positive action now. When you feel upset about something you have said or done, you will very likely find that saying “I’m sorry” will make you and your patient feel better. One man who cared for a sick relative advised: “Do the best you can under the circumstances.”
Depression. Depression is very common—and understandable—in families coping with serious illness. (Compare 1 Thessalonians 5:14.) A caregiver who suffers from depression explains what helped her: “Many would thank us for providing care. Just a few words of encouragement can give you a boost to carry on when you are very tired or depressed.” The Bible states: “Anxious care in the heart of a man is what will cause it to bow down, but the good word is what makes it rejoice.” (Proverbs 12:25) Others may not always sense your need for encouragement. So, at times, you may first have to openly express the “anxious care” in your heart in order to receive “the good word” of encouragement from others. If feelings of depression persist or become more severe, though, it may be advisable to consult a doctor.
Helplessness. You may feel helpless in the face of a debilitating illness. Accept the reality of your situation. Acknowledge your limitations—the patient’s health is not yours to control, but you can provide compassionate care. Don’t expect perfection of yourself, your patient, or your supporters. A balanced approach not only eases feelings of helplessness but also eases the work load. Wisely, many who have cared for a loved one advise: Learn to face one day at a time.—Matthew 6:34.
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“Confront and control your fears. Fear of what might happen is often worse than the reality”
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Encouraging Words From Caregivers
“DON’T be distressed by negative thoughts about yourself. They are normal under such circumstances. Certainly you shouldn’t bottle up your feelings. Confide in someone about how you feel, and if you can, take a break—go away for a while—so that you can feel refreshed.”—Lucy, whose work in a clinic has involved assisting a number of caregivers as well as patients.
“If there are family members or friends who are available and willing, let them help. It is vital that you share the load with others.”—Sue, who nursed her father before he died of Hodgkin’s disease.
“Learn to cultivate a sense of humor.”—Maria, who helped care for a dear friend who died of cancer.
“Keep spiritually strong. Draw close to Jehovah, and pray incessantly. (1 Thessalonians 5:17; James 4:8) He provides help and comfort through his spirit, his Word, his earthly servants, and his promises. Try to be as organized as possible. For example, it helps to make schedules for medicines and rosters for helpers.”—Hjalmar, who cared for his dying brother-in-law.
“Learn all you can about the nature of your patient’s sickness. That, in turn, will help you to know what to expect of the patient and yourself and how to care for your patient.”—Joan, whose husband has Alzheimer’s disease.
“Realize that others have coped before you and that Jehovah can help you cope with whatever happens.”—Jeanny, who took care of her husband before he died.
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To calm your fears, find out as much as you can about the illness
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Talking to an understanding friend can bring much relief
Caring for the Caregiver—How Others Can Help
“LAWRIE and I have been married for 55 years—a long time—and what happy years! If I could possibly have kept him at home, I would have. But my health started to deteriorate. In the end, I had to arrange for him to go into a nursing home. The emotional pain of relating this is almost too much for me. I love and deeply respect him and visit him as often as I can. Physically, I can do no more.”—Anna, a 78-year-old woman who for more than 10 years has cared for her husband who has Alzheimer’s disease and has also for the past 40 years cared for their daughter who has Down’s syndrome.*
Anna’s case is by no means unusual. A survey in the British Isles revealed that “in some age groups (the 40s and 50s) as many as one in every two women is a carer.” As discussed earlier, the emotional turmoil and problems that caregivers face may seem unbearable at times.
“I think at least 50% of caregivers get depressed in the first year of caregiving,” says Dr. Fredrick Sherman, of the American Geriatrics Society. For elderly people such as Anna, their own diminishing strength and deteriorating health can make the situation considerably more difficult to handle.
To help caregivers cope with their responsibilities, we need to be aware of their needs. What are those needs, and how can we respond to them?
Caregivers Need to Talk
“I needed to unburden myself,” said one woman who helped care for her dying friend. As shown in the preceding article, problems are often easier to face and deal with when they can be talked over with an understanding friend. Many caregivers who feel trapped by their circumstances find that talking about their situation helps them clarify their feelings and ease the pent-up pressure.
“I appreciated it when friends realized that both of us needed moral support,” recalls Jeanny of the time when she was taking care of her husband. She explains that those giving care need encouragement and, at times, a shoulder to cry on. Hjalmar, who helped nurse his sick brother-in-law, agrees: “I needed someone who would listen to my fears and problems and understand how I felt.” Concerning a close friend, Hjalmar adds: “It was very nice to visit him, even for just half an hour. He would listen to me. He really cared. I would feel refreshed after that.”
Caregivers can derive tremendous encouragement from an understanding listener. “Be swift about hearing, slow about speaking,” the Bible wisely advises. (James 1:19) A report in The Journals of Gerontology revealed that “just knowing that support is available is often enough to provide substantial relief.”
Besides a listening ear and moral support, though, what else do caregivers need?
Providing Practical Help
“Patient and family benefit from any means by which love and encouragement can be expressed,” observes Dr. Ernest Rosenbaum. To begin with, such “love and encouragement” can be expressed during a personal visit, during a telephone call, or in a short note (possibly accompanied by flowers or some other gift).
“It was comforting when our friends made brief visits,” recalls Sue of the support her family received when her father was dying of Hodgkin’s disease. “One of my friends,” she continues, “answered the phone and helped with the washing and ironing for all of us.”
Support for caregivers can, and should, include specific, tangible assistance. Elsa recalls: “I found it helpful when friends offered practical aid. They did not merely say: ‘If ever I can do anything, let me know.’ Rather, they said: ‘I’m going shopping. What can I bring to you?’ ‘May I care for your garden?’ ‘I’m available to sit with the patient and read to her.’ Something else we found practical was arranging for visitors to leave written messages in a notebook when my sick friend was tired or sleeping. That brought all of us a great deal of pleasure.”
Specific offers of help can include any of a number of chores. Rose explains: “I appreciated help in making beds, writing letters for the patient, entertaining visitors of the patient, obtaining medication, washing and setting hair, washing dishes.” Family and friends can also help the caregiver by taking turns providing meals.
Where appropriate, it may also be practical to help with basic aspects of nursing care. For example, the caregiver may need help with feeding or washing the patient.
Concerned family members and friends may offer practical help early in the illness, but what if the sickness is long-term? Getting caught up in our own busy schedules, we may easily overlook the ongoing—and possibly mounting—pressure that caregivers face. How sad it would be if the much-needed support began to wane!
If that happens, it may be advisable for the caregiver to call a family meeting to discuss the care of the patient. It is often possible to recruit the help of friends and relatives who have indicated a willingness to assist. This is what Sue and her family did. “When needs arose,” she relates, “we remembered those who had offered to assist and phoned them. We felt that we could ask them for help.”
Give Them a Break
“It is absolutely essential,” states the book The 36-Hour Day, “both for you [the caregiver] and for [your patient]—that you have regular times to ‘get away’ from twenty-four-hour care of the chronically ill person. . . . Taking time off, away from the care of the [patient], is one of the single most important things that you can do to make it possible for you to continue to care for someone.” Do caregivers agree?
“Definitely yes,” answers Maria, who helped care for a close friend who was dying of cancer. “Periodically, I needed to be ‘let off the hook’ and to have someone else take over the care for a while.” Joan, who cares for her husband who has Alzheimer’s disease, is of the same opinion. “One of our greatest needs,” she notes, “is to have time off now and then.”
How, though, can they get time off from the pressure of their responsibilities? Jennifer, who helped care for her aged parents, indicates how she got relief: “A family friend sometimes took mother for a day to give us a break.”
You may be able to give the caregiver a break by offering to take the patient out for a while, if it is practical to do so. Joan says: “I find it refreshing when someone takes my husband out so that I can be on my own once in a while.” On the other hand, you may be able to spend time with the patient at his home. Either way, make it possible for the one providing the care to get much-needed relaxation.
Bear in mind, though, that it is not always easy for caregivers to take a break. They may feel guilty about being away from their loved one. “It’s not easy to break away from the situation and engage in recreation or rest,” admits Hjalmar. “I felt that I wanted to be there all the time.” But he found greater peace of mind by taking a break when his brother-in-law required the least attention. Others have arranged to have their loved one looked after in an adult day-care center for a few hours.
The End of All Sickness
To be sure, caring for a loved one who is seriously ill is a tremendous responsibility. Nevertheless, caring for a loved one can be very fulfilling and satisfying. Researchers as well as caregivers point to strengthened relationships with family and friends. Invariably, caregivers learn new qualities and abilities. Many experience spiritual benefits as well.
Most important, the Bible indicates that Jehovah and his Son, Jesus Christ, are the most compassionate caregivers. Bible prophecy assures us that the end of all sickness, suffering, and death is near at hand. Shortly, man’s caring Creator will reward earth’s righteous inhabitants with everlasting life in a perfectly healthy new world—one in which “no resident will say: ‘I am sick.’”—Isaiah 33:24; Revelation 21:4.
Some of the names in this article have been changed.
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The sick person’s well-being depends directly on your well-being
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The support of good friends will do much to keep you going during the hardest times
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Caregiving Can Be Rewarding
‘REWARDING?’ some may wonder. ‘How can it be?’ Please note what the following caregivers told Awake!:
“Forgoing one’s own pursuits and desires does not mean less happiness. ‘There is more happiness in giving than there is in receiving.’ (Acts 20:35) It can be very fulfilling to care for someone you love.”—Joan.
“I was grateful that I could assist my sister and brother-in-law in a time of real need—without their being able to repay me. It drew us closer together. I hope that someday I can use the experience I have gained to help someone else in a similar situation.”—Hjalmar.
“As I told my ill friend Betty more than once, I received far more than I gave. I learned empathy and patience. I learned that it is possible to maintain a positive attitude under the most difficult circumstances.”—Elsa.
“I became a stronger person. I got to know more fully what it is like to depend on Jehovah God daily and have him satisfy my needs.”—Jeanny.
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When Visiting a Caregiver
• Listen with empathy
• Give heartfelt commendation
• Offer specific help
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Support caregivers by shopping and cooking for them or by helping them care for the patient