The Difficult Role of the Caregiver

“Sometimes I just wanted to run away. But he needed me more than ever. I often felt terribly alone” (Agata, who cared for her 29-year-old husband with a brain tumour for 18 months).

“Sometimes my mother irritates me, but then I get angry at myself. When I don't cope well, I feel worthless” (Rose, 59, who cared for her bedridden, sick 90-year-old mother).

News of a fatal or chronic illness affecting a family member or friend can be devastating. “At the time of diagnosis, every family feels alone. You may not know anyone with a similar problem,” writes Jeanne Munn Bracken in her book Children With Cancer. Relatives, too, are often “as if numb, and doubt what is happening.” That's how Elsa reacted when she learned that her close friend, 36-year-old Betty, had been diagnosed with cancer. And when Sue finally realised that her father was dying of cancer, she was overcome by “a feeling of terrible emptiness.”

Unexpectedly, the responsibility for caring for the sick person, for meeting their physical and emotional needs, falls on family members and friends. They may need to prepare nutritious meals, administer medication, take the sick person to the doctor, entertain their guests, write letters for them, and handle many other tasks. And often all of this has to fit into an already full schedule.

But the worse the condition of the sick person becomes, the more burdensome the care becomes. What does that involve? “Everything,” explains Elsa, referring to her bedridden friend Betty. “Washing, feeding, helping with vomiting, emptying the urine bag.” Kathy had to care for her sick mother while working full-time. Sue, mentioned earlier, reports that she “measured and recorded her father's body temperature every half hour, applied compresses when he had a fever, and changed his pyjamas and bedding every few hours.”

The quality of care depends heavily on the caregiver's own wellbeing. Yet their feelings and needs are often overlooked. It would be hard enough if it were just back pain and overworked shoulders. But as most caregivers can confirm, caring for a sick person is emotionally extremely exhausting.

That Was Very Embarrassing

Surveys often reveal how much distress unreasonable, embarrassing behaviour [by the sick person] or their inappropriate remarks can cause — reports The Journals of Gerontology. Gillian, for example, describes what happened when a friend asked at a get-together if she could visit her elderly mother. “Mum stared blankly and didn't respond,” Gillian recalls sadly. “It was very embarrassing and I had to cry.”

“That's one of the worst things you have to endure,” says Joan, whose husband has dementia. “The illness means he pays little attention to good manners,” she explains. “When we eat at a restaurant, he sometimes goes over to other tables, tastes the jam and leaves the used spoon in it. When visiting neighbours, he might spit on the garden path. I often feel like other people are talking about his behaviour and think he's uncouth. Sometimes I want the ground to swallow me up.”

“I Was Afraid We Were Being Careless…”
Caring for a loved one with a serious illness is often accompanied by great anxiety. The caregiver may fear what will happen if the person's condition worsens or they die. Sometimes they also fear that they themselves lack the strength or skills to meet the sick person's needs.
Elsa describes the reason for her fear this way: “I was afraid I would hurt Betty and increase her suffering, or do something that would shorten her life.”
Sometimes the sick person's fears become the caregiver's obsession. “My father would shake with fear of choking and sometimes panicked,” Sue confessed. “I was afraid that we were being careless, that he would really choke, and that the thing we feared most would happen.”

“You May Grieve That He's No Longer the Same Person”
“Sadness is a normal experience for people caring for a chronically ill loved one,” states the book Caring for the Person With Dementia. “As the disease progresses, you lose a companion and a bond that was important to you. You may grieve that the sick person is no longer the same person they used to be.”

Jennifer describes how her mother's declining health affected the family: “It hurt us a lot. We missed our lively conversations with her. We were very sad.” Gillian confesses: “I didn't want Mum to die, and I didn't want her to suffer. I cried the whole time.”

“I Felt Pushed Away and I Was Furious with Her”

A caregiver might ask themselves: “Why did this have to happen to me? Why doesn't anyone help me? Can't they see I'm not coping? Couldn't the sick person cooperate with me more?” The caregiver also feels strong anger when they believe the sick person or relatives are making excessive and unfair demands. Rose, mentioned earlier, says: “Mostly I'm furious with myself, inside. But my mother says it shows on my face.”

The sick person's frustrations and anger can rub off on the caregiver. In the book Living With Cancer, Dr. Ernest Rosenbaum explains that some patients “occasionally fall into anger or depression and vent their feelings on the person closest to them (…) This anger usually manifests as irritability over small things they wouldn't normally pay attention to.” Naturally, this puts further strain on the already stretched nerves of relatives who are doing their best to care for the sick person.

For example, Maria admirably cared for her dying friend. Sometimes, though, the sick woman became oversensitive and drew the wrong conclusions. “She would then be spiteful and sharp-tongued, which embarrassed her relatives,” Maria recounts. How did this affect Maria herself? “At first I thought I 'understood' her. But when I thought about it afterwards, I felt pushed away and I was furious with her, doubts crept in, and I didn't feel like showing her the love she needed.”

The Journals of Gerontology summarised the results of a survey: “Caring for a sick person can evoke very strong feelings of anger (…) [which] sometimes manifest in actual or intended acts of violence.” The survey found that nearly one in five caregivers fears they will treat the sick person brutally, and one in twenty actually does.

“I Feel Guilty”

Many caregivers are tormented by guilt. Sometimes it overtakes them right after an outburst of anger – they feel guilty for getting angry. These emotions can exhaust them to the point where they're no longer able to continue caring.

In some cases, there's no other choice than to place the patient in a suitable facility or hospital. This painful decision can be very stressful for the caregiver. “When we finally had to put my mother in a care home,” says Jeanny, “I felt like I was betraying her, abandoning her.”

Regardless of whether the sick person is in hospital or elsewhere, relatives can feel guilty about not doing enough. “I often regretted having so little time,” says Elsa. “Sometimes my friend just wouldn't let me leave.” They may also worry about neglecting other family duties, especially if they spend a lot of time in hospital or work longer hours to cover rising bills. “I have to work to cover the costs,” one mother complained. “And yet I feel guilty that I can't be at home with the children.”

Caregivers urgently need support, especially after the death of the person they cared for. Dr. Fredrick Sherman of Huntington, New York, explained: “My most important task [after a patient's death] (…) is to ease the caregivers' feelings of guilt, which they often don't express out loud.”

Suppressing these feelings can harm both the caregiver and the sick person. So how can caregivers deal with their feelings? And how can relatives and friends help?

Don't Take It for Granted!

“We know that 80% of caregivers of elderly family members are women,” says lecturer Myrna I. Lewis of the Department of Social Medicine at Mount Sinai Medical School in New York.
According to a survey published in The Journals of Gerontology, 61 percent of these female caregivers report receiving no support from family and friends. More than half (57.6 percent) feel insufficiently emotionally supported by their husbands. In her book Children With Cancer, Jeanne Munn Bracken notes that when the mother bears the main burden of care, “the father often escapes into his professional work.”

Dr. Lewis points out, however, that many men also care for the sick. A fairly large group are husbands of women with Alzheimer's. They are undoubtedly not immune to the strain of caring for their sick partners. “These men may be in the worst position,” Dr. Lewis continues, “since they are usually older than their wives and are not in the best health themselves. (…) Most of them have no experience in nursing care.”

Families should not leave the duty of care to just one person who seems to be coping well with it. “Often the task of caring for the sick always falls to the same family member, sometimes repeatedly,” states the book Care for the Carer. “Usually these are women who are themselves growing older. (…) There is also a widespread assumption that caregiving is 'in the nature' of women (…), but relatives and friends should never take this for granted.”

‍