9781572241657

Chapter One

Being a Caregiver

In this chapter we define the term caregiver. You will learn how closely you fit the profile of the typical caregiver with regard to the kinds of services you provide, the pressures you are under, and how you happened to become a caregiver. At the end of the chapter, you will be given the opportunity to use your newfound knowledge to plan for any desired changes.

Your Caregiver Profile

A caregiver is an individual who provides care for another person who, ordinarily, would not require care. For example, someone may become a caregiver when a spouse or partner suffers an injury or becomes chronically ill. Similarly, parents are usually responsible for the care of their children, but as parents age, their children become their caregivers. In some cases, the label is applied when the care needed goes far beyond what would normally be required, as when a twelve-year-old brain-damaged child needs to be fed, toileted, and bathed.

Caregiving is actually a two-part process, in which the caregiver first must recognize the needs of the care recipient, then figure out how to meet them. Depending on the nature of the problem, helping may require a small amount of work or a great deal. In the latter case, everyday tasks such as bathing or eating can become tedious chores that take extended periods of time to accomplish.

No matter what tasks they perform, caregivers must be sensitive to their care recipients' feelings about being dependent. When some people need help, they accept it graciously and are cooperative. Others, however, may be difficult, angry, or rude. Disgusted with themselves, furious with life, and enraged at their illness or disability, members of this second group may curse and berate the very people who provide the help they need. Care recipients may be whiny and manipulative or stubborn and resistant. Some become possessive and demanding, resentful of any attempts their caregivers make to take time for themselves. If you are a caregiver and wish to remain sane and helpful, you must not only be a planner, innovator, organizer, and helpmate, but a psychologist as well! You must be accepting, forgiving, understanding, and patient. And, while doing all this, you must attend to your own needs, or you run the risk of burnout. Make no mistake about it, caregiving is anything but easy.

Reactions to Being a Caregiver

Although it is impossible to predict with certainty how a person will react to becoming a caregiver, the following variables help determine the ease with which this role can be assumed. In assessing your own reactions, consider each of the following factors.

The Suddenness with Which You Are Thrust into the Role

Did you expect to become a caregiver? If you are thrown into that role without warning or the chance to prepare emotionally, you may have an unusually difficult time. On the other hand, if you take on that role gradually, adjustment is often easier. This was what happened in the L family. Over many years, Mrs. L, who was healthier than her husband, gradually assumed more and more tasks in caring for him. Toward the end of his life, she almost literally became his eyes and ears. A woman of strong will and boundless energy, she managed to provide most of the care he required until she was in her mid-eighties. A home health aide was brought in (and willingly accepted) only when the limits of the elderly woman's strength and endurance made caregiving impossible. The fact that her responsibilities grew incrementally over the years gave her time to adjust emotionally to the role and to develop needed skills. Not all caregivers have that luxury.

The Phase of Your Life Cycle

As partners age, they expect to provide caregiving services for one another. Health problems and minor surgeries become more common, knees wear out, chronic conditions such as arthritis and high blood pressure take their toll. It is quite another matter when a young person must care for an equally young spouse. For example, a thirty-three-year-old woman, with two small children and a career of her own, had to care for her thirty-five-year-old husband when he was diagnosed with inoperable bone cancer. So many demands fell on this young woman's shoulders at the same time that she was almost crushed beneath their weight. "Everything I counted on was falling apart. How could I face losing my husband? What about the children? My career? His parents? My parents?"

There is never a right time to become the caregiver for a chronically ill or disabled person, but some times are worse than others. For example, the early phases of a family's life cycle are typically characterized by the presence of young children and unsettled finances. If the family has relocated recently (not unusual for young couples), they may also have limited knowledge of the new community and its resources. These factors, when added to caregiving responsibilities, may create more stress than they can handle.

The Anticipated Outcome

Short-term caregiving is much easier to accept because the disability is temporary and the anticipated outcome is a happy one. For example, when one partner cares for another following a surgical procedure from which complete recovery is expected, caregiving is usually short-term and upbeat. Taking on the role of caregiver is far more upsetting and terrifying when there can be no happy ending.

The Quality of the Relationship

The presence of love and mutual respect between partners in their normal interactions increases the likelihood of a generous give-and-take in adverse circumstances. By contrast, when genuine caring is absent, a partner's needs may quickly become burdensome. Caregiving is like a litmus test of the health of the relationship. "Our marriage was always a sham," a woman said recently, in the course of discussing her angry reactions to caring for her husband following a serious accident. "I can't stand taking care of Pete. I knew things weren't good, but I didn't realize they were this bad. I guess I just didn't want to face how little we really have between us."

Sometimes, even prior to the onset of formal caregiving, there is a long history of dependency on the part of one spouse. If the dependent partner becomes ill or disabled, his spouse, worn down by everyday, unacknowledged caregiving, may become resentful of the additional burden. In one instance, following a needy spouse's back surgery, his always-patient wife became contemptuous of her husband's disability and she provided care only grudgingly. (See chapter 7 for more on this subject.)

The Demands on the Caregiver

Some care recipients need care that is easy to deliver. The caregiver's responsibilities may be limited to providing companionship, reminding a partner to take a pill, and driving him/her to the doctor. On the other hand, care recipients may be completely unable to care for themselves, requiring assistance with walking, showering, and even using the toilet.

One elderly couple brought this point home clearly. They were referred for counseling by a neurologist following a worsening of the husband's symptoms of dementia. The problem for which they were referred, however, was his healthy wife's distress. She was nearly overwhelmed by her husband's illness, and made it quite clear that it was she, not he, who needed support. "I don't know if I can cope any longer," she stated sadly. "How can I take care of him when he can't even remember who I am!"

The Care Recipient's Attitude

Care recipients are often far from cooperative. They may be so angry at being ill or disabled that they cannot acknowledge the help they're receiving, let alone express gratitude for it. Feeling sorry for themselves, consumed by self-pity, they cannot appreciate the efforts made on their behalf.

Ironically, however, gratitude and cooperation don't always make things easier. They may have the opposite effect, inhibiting any feelings of anger and resentment the caregiver may have, thereby making her job even more difficult. (See chapter 3 for a more complete discussion of this subject.)

The Caregiver's Temperament

Relaxed, confident, and flexible caregivers are able to assume their burdens with quiet calm, inspiring faith in their care recipients. Conversely, anxious and uncertain caregivers, often edgy themselves, do anything but inspire confidence. Caregivers who know and respect their limitations, and who are willing to ask for help, almost always succeed with less angst than those who feel they must do it all and are unwilling to ask for or accept assistance.

At this point, we would like you to take a few moments to answer some questions about yourself as a caregiver. Throughout this book, we will ask you to respond to questions like these. Your answers may be used as a starting point for discussion in a caregiver support group or to help you identify problems or plan for changes on your own. To derive full benefit from your reading, we ask that you take the time to answer these questions thoughtfully and honestly, and use them as an opportunity to clarify your feelings and needs.

Your Caregiver Profile

Please answer each of the following questions by checking the appropriate box.

1. Your sex:

[] M

[] F

2. Your age:

[] Under 30

[] 30-39

[] 40-49

[] 50-59

[] 60 or above

3. Your relationships:

[] Married or live with partner

[] Single, divorced, separated, or widowed

4. Your responsibilities in addition to caregiving:

[] Work inside the home

[] homemaking

[] home-based business

[] care for children under age 18

[] care for children over age 18

[] Work outside the home

[] parttime employment

[] fulltime employment

5. Percent of caregiving responsibilities that fall on you:

[] 100% (you are the sole caregiver)

[] You share caregiving responsibilities with others

[] bulk (more than 50%) of caregiving responsibilities fall on you

[] bulk of caregiving responsibilities fall on one or more other persons

6. The person for whom you provide care:

[] spouse or partner

[] child

[] parent

[] sibling, friend, relative, or other

Compare your answers to those of the typical caregiver. The following data, collected and reported by both the National Family Caregivers Association (National Family Caregivers Association 1998), indicate that the typical family caregiver is female (82%), married (74%), and between thirty-six and sixty-five years old. She is likely to be employed (47%) and to work more than thirty-one hours a week (71%).

Most caregivers care for a spouse or partner (48%). A smaller percentage cares for a parent (24%). Nineteen percent provide care for children; the remainder (9%) care for a sibling, friend, relative, or some other person.

The typical female family caregiver often gets little help. When the care recipients are elderly parents, male siblings are likely to provide moral support and sometimes financial help, but little more. Female siblings sometimes cooperate, although one daughter often assumes the bulk of the responsibility. For example, in one case a dutiful daughter cared for both of her elderly parents while her less responsible sister remained uninvolved, doing little more than calling her parents occasionally and visiting them once in a great while. Sadly, on the few occasions when she and her sister did make time to discuss the disparity in their responsibilities, the uninvolved sibling almost always called her sister a martyr and a fool.

Caregiver Pressures

Family caregivers experience many different pressures. Some can be traced to external factors. Others originate within the caregivers themselves.

Typical External Pressures

Your spouse complains that you are unavailable. He may say that "Even when you're here physically, you're not here emotionally." Your children resent the fact that you're always so busy you have no time for them. Your boss and colleagues tolerate your personal phone calls, occasional absences, late arrivals, and early departures. However, tolerant as they may be, they make it known that they still expect you will fulfill your job responsibilities. Your siblings simply expect that you will be able to do it all. Your friends become impatient with you because you cancel social engagements, fail to return calls, and drop out of touch for long periods of time. In each of these instances, you feel pressure. Whether subtle or direct, it is burdensome.

Unusual External Pressures

Often caregivers must cope with additional stress unrelated to caregiving. Some may be under extreme financial pressure. Others are facing divorce. Still others may have just lost a job. These additional stressors put the caregiver at risk for overload and burnout, and demand special vigilance with regard to self-care. The coping strategies discussed below will be especially useful for caregivers in these potentially explosive situations.

Internal Pressures

In addition to pressures that originate externally, caregivers sometimes impose pressures on themselves. For instance, you may expect that regardless of the number and kinds of responsibilities you must fulfill, you should be able to carry them off without letting anyone down. One woman berated herself for her inability to take care of her ill husband while simultaneously looking after her three children, running a business, and caring for her own elderly parents. Only after she thought about her predicament did she come to realize that she simply could not do all she wished. Other pressures are the result of loneliness and isolation. Friends may drift away because they have never lived through your situation and cannot appreciate the trials you are experiencing.

As a caregiver, you probably live with almost constant feelings of frustration. Coping with a loved one's temporary disability is difficult enough. When age, permanent disability, long-term health problems, a chronic mental disorder, or a terminal illness makes any prospect of recovery impossible, the situation is indeed depressing.

Leisure time is a phrase that may well have lost meaning for you. You are not alone. Many caregivers complain of a lack of leisure and personal time.

The Caregiving Services You Provide

There are different kinds and degrees of caregiving responsibilities. Some caregivers are little more than companions to their care recipients. They may read to their care recipients or bring them lunch. These are relatively simple services--neither physically taxing nor emotionally demanding. On the other hand, the caregiver may become the eyes, ears, and mind of the recipient.

Often, caregiving responsibilities change over time. For example, when you provide care for an aging individual, it's typical for demands to increase as time passes. To gauge the kind of caregiving responsibilities you have, please complete the following questionnaire:

Caregiving Services

Please put a checkmark on the appropriate lines.

1. As a caregiver, I primarily:

____ Provide companionship and show concern through calls and occasional visits

____ Take my care recipient to lunch

____ Shop with my care recipient

____ Arrange for occasional outings

2. As a caregiver, I primarily:

____ Arrange medical appointments, coordinate schedules, etc.

____ Take my care recipient to medical appointments; provide transport for laboratory tests, and take him/her to and from procedures (such as surgeries) performed on an outpatient basis

____ Consult with members of my care recipient's health-care team and make decisions in consultation with my care recipient

____ Shop for my care recipient

____ Prepare some meals for my care recipient

3. As a caregiver, I primarily:

____ Provide homemaking services (do laundry, clean house, etc.)

____ Arrange for home repairs, maintenance, etc.

____ Prepare most or all meals

____ Arrange for care when I can't be there

____ Pay bills

4. As a caregiver, I primarily:

____ Provide help with bathing, dressing, eating, and using the toilet

____ Assist with the management of incontinence

____ Help my care recipient cope despite serious cognitive disabilities (for example, the forgetfulness and lack of orientation characteristic of Alzheimer's disease)

____Arrange for home-health aides and others to provide help when I am not available

5. As a caregiver, I primarily:

____ Help my care recipient prepare advance directives such as a living will

____ Serve as health care proxy

____ Serve as attorney-in-fact for most or all other matters; manage all financial affairs, etc.

The items in this questionnaire were arranged in five clusters of caregiving activities. Each cluster represents a different degree of responsibility. See the table below:

Cluster Number Description

1. Light duty (companionship, socialization)

2. Medium duty (oversight, transport, consultation, and practical assistance)

3. Substantial duty

4. Heavy duty (services essential for living)

5. Legal, ethical, and moral responsibilities

Items in the higher number or later clusters are usually added to those in the lower number or earlier clusters, rather than simply replacing them. For example, providing companionship does not end when medical oversight and transport are added to your caregiving responsibilities. As time passes, and as a care recipient ages or becomes sicker, the caregiver takes on more and more responsibilities. Little wonder that the death of a recipient sometimes evokes not only sadness, but relief and anxiety as well. "What will I do now?" is a question more than one caregiver has asked herself when her care recipient has died.

How You Became a Caregiver

Why do certain family members become caregivers while others do not? Under what conditions does an individual take on this role? Is the decision made because of social expectations? Gender? The relationship with the care recipient? Accident or circumstances? Family pressures? Timing? Physical proximity to the person(s) needing care? Consider the following examples:

1. Several years after Rosemary married Carl, he was stricken with myasthenia gravis, a chronic and debilitating condition. Since she was his wife, it seemed most reasonable that she would assume responsibility for his care.

2. When Dr. and Mrs. Shapiro's third child was born with a serious brain disease, it seemed natural that they would serve as her caregivers.

3. When, by second grade, it became clear that Brian was learning disabled, his mother assumed responsibility for advocating on his behalf, attending parent-teacher conferences, and ensuring that he got the extra help he required. Because his father worked outside the home in a job that required frequent travel, his mother, Sharon, seemed the logical person to assume responsibility for his care.

4. As Jose's parents grew older and became infirm, it seemed logical that Jose and his wife would be the ones to care for them; Jose's brother, Manuel, had never been very close to either of his parents. Furthermore, Jose had long been the "good" child in the family.

5. Tahitia had always been considered the "crazy" one in her family: sensitive, deeply feeling, and intelligent, she had never really been understood by her parents or her younger sister, Mavis. Although their father died when the girls were in their late twenties, their mother lived on for many years. Mavis automatically assumed responsibility for her care. The fact that this placed all the responsibility on her shoulders was considered an acceptable price to pay for maintaining peace in the family.

6. When Mrs. Borruso, eighty-one, began showing signs of dementia, her husband, Emil, eighty-three, assumed the role of caregiver. However, despite his good intentions, he was not really up to the task. This placed their daughter in a predicament. Whenever she attempted to intervene, Mr. Borruso rebuffed her efforts. "I had to pretend my father was taking care of Mom," she observed, "while, in fact, the responsibility fell on me."

As these examples illustrate, many circumstances contribute to a person becoming a caregiver. The key factors are: social expectations, relationship quality, self-perceptions, and accident and circumstances. Often, two or more factors combine to determine the decision.

Social Expectations

In most societies, ours included, there are unwritten expectations about who will care for whom in the event that caregiving becomes necessary. For example, if a child is ill, disabled, or born with a birth defect, it is expected that the parents will assume responsibility if at all possible. If a spouse or domestic partner becomes ill or is injured, it is assumed that the able-bodied partner will become the caregiver. Similarly, as a person ages, it is the life partner who usually provides care until that is no longer possible. At that point their children, if there are any, will take on the job of providing care. Institutionalization is socially sanctioned only when the situation becomes unmanageable, and even then, it is often accompanied by recriminations and guilt.

Within the realm of social expectations, gender becomes a factor. In most societies, women are expected to be caregivers as a natural extension of their nurturing role. Although men can be wonderfully compassionate, they are not commonly expected to take on this responsibility.

Convenience is also a factor. It is usually assumed that the person who lives closest to the care recipient and whose schedule is the most flexible will become the caregiver. This may, unfortunately, result in a resentful caregiver who feels boxed in and unable to refuse the role because it makes "so much sense" for her to take it on.

To provide a sense of the rules that govern decisions about who assumes caregiving responsibilities, we have created a decision tree that reflects what we have observed. Our goal is not to include every conceivable situation in which care is required, only the most common ones.

Two other family-related variables play a role. The first one is past behaviors within the family. In every family, some members are simply more solicitous, more accommodating, and more willing to put themselves out for others. If a person has earned that reputation, it's likely he or she will become a caregiver when the need arises.

The second variable is birth order. For one thing, age is often tied to status in families, even among adult children. For that reason, younger adult children, perhaps the youngest, will be charged with caregiving responsibilities. For another, the youngest adult child may still be living at home when the need for caregiving arises and the older siblings may have been on their own for some time.

Relationship Quality

All other things being equal, the person who has the closest and most gratifying relationship with the care recipient is most likely to become the caregiver. Often this is the favorite child. This was the case in the O'Brien family. Margaret was the apple of her parents' eye. Her sister, by contrast, had always been a source of distress. Rebellious and self-absorbed, Nora had provided little gratification to her hard-working parents. It was thus logical that when it came time to provide care, Margaret would take on those responsibilities.

Self-Perception

Self-perception almost always plays a part in determining the choice of caregiver. If a person sees herself as caring, devoted, reliable, and so on, she will likely assume the role. Since terms such as caring, kind, and compassionate are more often applied to women than men, it's not surprising that women are assigned the caregiving role, and that they are also most likely to see themselves as fitting the part perfectly.

It's also likely that a good many caregivers assume that role because it suits them temperamentally. Something in their personality makes them capable of tolerating the demands of caregiving. Indeed, some caregivers take genuine pleasure in their work. Here, for example, is the response of a caregiver who attended one of our workshops. When asked about the rewards of caregiving, she wrote: "I think my caregiving has made me a better person." These are some of the benefits:

1. A new relationship with person being cared for (in her case, it was an elderly mother)

2. A chance to give back

3. A sense of accomplishment

4. Development of new skills, knowledge (e.g., advocacy abilities)

5. Increased compassion and personal growth

6. New relationships with others through support groups

7. The building of memories

Sometimes, however, the motives underlying an apparent desire to provide care are not at all benign. Some caregivers, for example, take perverse pleasure in playing the martyr, simultaneously "upstaging" other family members and inducing guilt. "See what a good child I am," they say by their self-sacrifice. Others do it for more sinister reasons, such as to take financial advantage of the care recipient. It would be unfair to defame all caregivers by assuming they are driven by unhealthy motives. Yet it would be naive to assume that love and compassion are the only motives involved.

Accident and Circumstances

Some people are thrust into the role of caregiver by accident and circumstances. As the table above suggests, if one's child requires special care, it falls on the parent to assume the job. Similarly, if one's partner is disabled or stricken with an illness, it is the other's responsibility to see the loved one through the ordeal. Likewise, an only child, or the only caring one, usually takes care of aging parents.

Such caregivers may not delight in what they must do. They may actually hate it, but they believe that they have little choice. Under such circumstances, it is healthier to face the anger and resentment at having been forced to assume the role than to suppress such feelings. (See chapter 3.)

The checklist on the following pages is intended to heighten your awareness of how you happened to become a caregiver. After you have completed it, you will have a chance to review your results, identify any changes you wish to make, and formulate an appropriate action plan.

Why You Became a Caregiver

Instructions: Please indicate the extent to which, in your opinion, each factor resulted in your becoming a caregiver. Mark each scale at the appropriate point.

(Continues...)

Amazon no longer offers textbook rentals. We do!

Amazon no longer offers textbook rentals. We do!

We're the #1 textbook rental company. Let us show you why.

I'll Take Care of You

1572241659

Summary

Supplemental Materials

Excerpts

Rewards Program