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.a

“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?

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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,b 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.”

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Caregivers need support in coping with feelings of guilt and anger