from the Extensions of Cooperative Education Universities - Family Caregiving Resources

Caring for another person can cause considerable stress, whether you are caring for a spouse, parent or close friend.

Stress comes from many factors. For example, you may find yourself doing more tasks that leave you with less time for other family members or activities you enjoy. Your partner may need help with things that you don™t know how to do or that fall outside your own comfort zone. We each react differently to the experience of losing the ability to do or think for ourselves. Your partner may withdraw from you or get frustrated and upset. Either way, your relationship may seem different. Some people find themselves worrying more about everything.

Ongoing stress can affect your physical and emotional health. It can even shorten your life. Let's explore some of the stresses of caregiving, their potential impact, and why we each react differently to the caregiving experience.

What is stress? Webster's dictionary defines stress as physical or mental tension, strain or pressure, from factors that change an existing balance. Many factors cause caregiving stress. They include:

• How you feel about changes in your relative's or partner™s ability to think, plan, make decisions or convey needs and desires. Caregivers of people with Alzheimer's disease tend to be more stressed; many also experience clinical depression.
• Unpredictable changes in the care receiver™s actions or moods. That is, going outside or walking away from home; keeping you up at night; becoming angry or fearful; or repeating the same question over and over.
• A growing need for your help with everyday tasks like fixing meals, using the toilet or taking a bath.
• How you feel about doing various caregiving tasks.
• How you feel about the care recipient.
• How you feel about the caregiving situation you are in.
• Making changes in your job or your living situation to become more available to give the kind of care your relative or partner needs.

Women have higher stress levels

Research has shown that gender and living in the same household with the care receiver are connected with high caregiver stress levels.

Women tend to experience higher stress levels than men. This maybe because women perform intimate caregiving tasks more often than men (bathing, shaving, and feeding). Women also juggle multiple roles such as child-rearing and working outside the home, along with caregiving.

Women are more likely to provide care in their roles as spouse, daughter, daughter-in-law and friend than are men, who often rely on women in the family to do the caregiving. Gender isn™t the only factor related to caregiving stress. Surprisingly, one's attitude toward caregiving is also related to caregiving stress

Personal ™rules™ and expectations about caregiving cause stress

Why is it that something that causes stress for one caregiver doesn™t bother another? Each of us is guided by personal rules that we acquire throughout life. These rules guide our actions and are shaped by our social environments. Not everyone lives by the same rules. We are influenced by expectations we learn from society, our ethnic and faith communities, and our own immediate family. This includes where and how we were raised. These rules also emerge from the unique relationships caregivers have with their relative or partner, and their particular caregiving situations.

A growing body of research shows that stress level is affected by how you feel about being a caregiver. Sometimes we are not even aware of these personal rules and expectations that guide our behavior. Below are examples of rules and how they can influence caregiving:

It is important to understand the rules that guide your own actions. Why? Often, it is your sense that you are not abiding by your own personal rules that cause stress--not necessarily the caregiving tasks you perform. In short, stress results not from caregiving but from how you feel about giving care. When you don™t feel like you are living up to your own expectations you can feel stressed. This has been called œrole captivity. For example, a wife may believe it is her job to care for an ailing spouse even when she does not want to take on new responsibilities. In a sense she is 'held captive™ in this perceived role of providing care because she believes it is expected of her as a spouse. Women in our society are ˜supposed™ to provide care, especially a wife. She may not want the job but she perceives she does not have a choice. Keep in mind that sources and levels of stress will change as your relative or partner™s needs alter and you both move through the caregiving journey.

Types of caregiver stress or burden

Understanding the source of your own caregiving stress and recognizing that it may come from different sources, can help you explore potential ways to reduce it. There are three kinds of caregiver stress or burden. Each is described below:

(a) Relationship stress/burden is stress that stems from a strain in the relationship between the caregiver and the care recipient. This occurs when someone is uncomfortable with changes occurring in the relationship with the care receiver. The caregiver perceives that his/her partner is requesting attention or care that goes beyond what the situation requires. Perhaps the two people have not gotten along very well over the years. Poor communication and episodes of anger, fighting or abuse may be old issues that will not improve or go away with caregiving.

Another cause of relationship burden has to do with the caregiving situation itself. Let's look at a couple of examples. Prior to her husband developing Alzheimer's disease, Jane looked forward to Friday fish fries, playing cards with friends on Saturday night and spending Sunday with the grandkids. Jane and Jim aren™t able to do those things now. She sometimes blames Jim when she is upset by the loss of companionship and treasured routines--and then feels guilty.

In another example of relationship burden, Bonnie has high standards for maintaining her home. She has always handled all the cooking, cleaning and laundry, but her husband Dan has had to take on these responsibilities as the result of her illness. It is causing some problems because Bonnie thinks Dan is not doing a good job, despite his efforts to learn how to perform these new tasks. Dan resents having to do things he thinks Bonnie should still be able to do.

(b) Objective stress/burden or instrumental stress or burden is the perception that caregiving tasks are interfering with other daily activities and responsibilities. Picture a caregiver with multiple roles who just can™t get everything done. This may be a person who works full-time, serves on the board of a community or civic organization, is a single parent and cares for an ill father who lives alone. He has a good relationship with his father but is trying to juggle all these commitments. His caregiving responsibilities are infringing on the amount of time and energy he has for meeting other family obligations and personal needs.

(c) Generalized stress or burden refers to a general sense of anxiety that a caregiver may have about the caregiving experience. Some caregivers experience a persistent level of worry or general anxiety that is not due to a specific caregiving event, task or interaction. The source of stress may even stem from a problem at work, a conflict with a friend or another relative, or a situation with a child that is projected onto the caregiving situation. Generalized stress can be felt by people who are chronic worriers or new to the caregiving role, or by someone who tends to worry about the future. Even experienced caregivers may worry about caregiving--though they know there is nothing more they can do.

Consequences of not dealing with stress

Caregivers who do not deal with the stress in their lives can become ill or even die. They may fail to take preventive health measures that can prevent negative outcomes. For example, they may not exercise, eat the right foods, listen to their bodies, see a doctor when symptoms arise or take medications as prescribed. Caregivers focused on the well-being of the person they are caring for sometimes neglect their own needs. They may have trouble admitting that they need support. Some think they just don™t have the time or right to consider anything else.

Caregiving stress can carry over into all aspects of one's life including, family, work, social and leisure activities. Persistent stress can lead to lower self-esteem, a loss of boundaries or sense of self, and a perceived loss of competence. Caregivers can suffer from lack of immunity, slower healing rates and high blood pressure. What's more, they are less likely to set aside time for rest and exercise.

As a group, caregivers report more anxiety, depression, and increased use alcohol or other drugs. Webster's dictionary defines depression as a state of feeling sad, difficulty in concentrating, thinking and sleeping, loss of appetite, feelings of dejection and hopelessness. When it comes to depression, researchers have found that Caucasian caregivers tend to be more depressed than African-American caregivers. Possible reasons are some African-American caregivers use prayer, faith and religion to cope resulting in a more positive attitude toward providing care.

Stress reducing strategies

The first step in reducing stress is to identify the source. Use of services that reduce the number of daily caregiving tasks or help make them easier, may be an answer to reducing objective stress caused by task overload. Counseling or educational services that provide feedback and strategies may be suitable for stress that stems from a strain in your relationship. Caregivers who experience persistent anxiety may find it helpful to learn about techniques that can lower stress and prevent health consequences. Making a connection with others caring for an ill relative or partner can also reduce isolation and reinforce a positive assessment of your caregiving duties. Understanding the type of stress you are feeling will help you set goals and find community supports that meet your needs. Here are some suggestions to consider:

Support Services to Lower Objective Stress/Burden:

• Use of assistive technologies to ease your workload, difficulty of care tasks and promote safety (e.g., emergency response system; assistive devices and care supplies; installation of safety features in the home).
• Help from family and friends to accomplish specific tasks or provide companionship for your relative/partner so you can complete tasks.
• Sitter, companion or friendly visitor for your relative/partner or adult day services.
• Services to assist with housekeeping, personal care, yard work or transportation.
• Support groups that teach caregiving skills, learn from other caregivers how they manage their roles and responsibilities.
• Rehabilitation therapies to help your partner improve physical strength, mobility and self care.

For Relationship Burden/stress:

• Educational materials about your partner™s particular medical condition(s) to learn more his or her potential abilities (for example, brochures, fact sheets, books, CDs).
• Educational programs that address the caregiving journey, coping with the unexpected and finding perspective in a changing landscape.
• Counseling about family relationships, communication, and loss.
• Counseling to enhance current coping and problem-solving skills.
• Help from family and friends with tasks you feel uncomfortable doing.
• Support groups that share their experiences on ways to communicate with the care receiver or family members.

Generalized burden/stress- reducing strategies have to do with gaining a sense of mastery or control. Caregivers who feel more in control have a much lower sense of stress. Find out if your community offers workshops on stress management, staying healthy, managing time and tasks, and caregiver coping strategies

When looking for help with caregiving stress, select a strategy and type of community support you are comfortable using. For example, if you don™t enjoy ™sharing,™ attending a support group where members discuss their experiences may not be the best fit for you. Also look for stress-reducing strategies that help you gain a sense of mastery or control. Making connections with others who are caring for an adult relative/partner can reinforce the good job you are already doing and provide both a source of friendship and emotional support.

In summary, caregiver stress does not necessarily stem from the tasks you are doing, but how you feel about what you are doing. It is difficult to find solutions that can improve your current situation when you are under great stress. Determine the type of stress you are experiencing and look for ways to address the source of it. To help determine the type of stress you are experiencing, ask yourself questions about what creates your stress --is it due to relationships, the number of tasks that need to be accomplished or feelings or anxiety or worry? Some agencies may have a caregiver assessment to help identity your source of stress.

Talking with others can be a stress reducer for some caregivers. Remember to communicate with family members and friends as they cannot read your mind. They often do not know what specific type(s) of stress you are experiencing. Each person has a unique perspective. Only you can share which supports you would find most useful. Ask for help and be specific in your requests. As an informed caregiver you will have more choices and a better understanding of the types of supports and resources in your community that can reduce your stress.

For more information, see Managing the Stress of Caregiving.