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Stress and Distress
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Sources of stress

The physical problems that may accompany a life-limiting illness are the most obvious sources of stress. However, the stress related to the illness may often be increased by practical and emotional problems and by family and spiritual or religious concerns.
 

Physical

These are common physical problems that may contribute to increased stress:
• changes in physical appearance or in body functions resulting from the illness;
• changes in energy or wellness level;
• difficulty in getting around;
• changes in sleeping pattern;
• changes in eating pattern or level of interest in food;
• effect of diagnostic and treatment procedures, which may cause uncomfortable or painful side effects or cause worry, and also disrupt personal schedules.
 

Practical

Life-threatening illness may bring new and sometimes overwhelming stress through its impact on the practical aspects of life. You and your family may find it difficult to maintain routine and normalcy in your daily life. Frequently patients and their families experience difficulties and stress in the following areas:
• responsibilities in providing care
• finances or housing
• transportation
• work or education
• legal matters
• availability of medical care and support in the home
• access to medications
 

Emotional

The emotional pain that arises when you anticipate the end of your life or the death of a loved one may be more intense and harder to cope with than the physical pain or discomfort. The emotional pain is personal and unique to the person who experiences it. Frequently, however, one or more of the following is a source of such pain:
• fear of dying or of the unknown
• guilt about specific events or relationships
• sadness about separating from one’s family or friends
• sense of helplessness and loss
• diminished sense of self-worth
• disappointment over failed treatment leading to hopelessness
• worry, anxiety, nervousness, or panic
• difficulty making plans
• anger or frustration
 

Family

The stress that arises from a life-limiting illness usually affects relationships with family members and others close to you. You may experience stress in relationships with your children, your partner, other relatives, friends, or care providers. These are common sources of stress in such relationships:
• fear of being abandoned
• concern about becoming a burden
• loss of family and social roles
• sexual concerns
• conflict
• mistrust
• estrangement or withholding of forgiveness
• care that seems to lack compassion
• social isolation
 

Spiritual/religious

Spiritual pain is often intense and overwhelming. It arises from threats to your assumptions about yourself and life. Spiritual pain and concerns may be related to any of these factors:
• loss of meaning or purpose in life;
• spiritual emptiness or loss of faith;
• regret about the past or feelings of failure;
• questions about the justice or fairness of life;
• feeling a loss of the presence or protection of a higher power;
• fear of punishment;
• isolation from spiritual supports.
 

By: Glen R. Horst MDiv, DMin, BA and Freya Hansen, RN, MN
 

What is stress?

A life-threatening illness can bring a lot of additional stress into the life of a patient and his or her family. Stress appears in various ways. Your body may feel full of anxiety or nervous tension. Physically you may experience a faster and stronger heartbeat; muscle tension particularly around your jaw, neck, or back; headache; upset stomach; shortness of breath; sweaty palms; and dizziness. Emotionally you may feel very anxious, edgy, irritable, constantly worried, or feel depressed. New tensions may arise in your relationships with family members or friends. Hassles with care providers may erupt unexpectedly.

Stress does not occur only in times of illness; it is a challenging and stimulating part of life. Often stress helps you to find creative responses to life’s problems and to discover abilities you did not know you had. Stress helps you develop coping abilities and resiliency for facing life’s difficulties. Take time to remember how you have coped with stress at other points in life. It may provide ideas for responding to your present situation.

When stress starts to overwhelm and distress you, it is no longer positive. Distress occurs when you feel you have no options or resources for coping with your situation. You may feel helpless, and that may threaten your sense of well-being. As distress mounts, you may feel you are losing touch with who you are and with the usual ways you have lived your life. These are very normal experiences, but they may make you feel very abnormal.

This article will help you to understand possible sources of stress, how to evaluate your stress and identify some strategies to help reduce stress.
 

Take your stress temperature

If you are feeling distressed, you may find it helpful to identify the sources of your stress. Review the lists of stressors in the preceding section. Put a tick beside the items that have caused you distress in the past week. (You can do this most easily if you print off this article). Add any important concern or difficulty you have that is not on the list. Then select the four (4) top difficulties. After you have done this, you may want to use the thermometer below to identify how much stress in general you have been experiencing over the past week or two.

 


 


 

The following factors may strongly influence how you experience stress. As you consider your stress temperature, reflect on the following areas.
 

Stage of life

Your stage of life will shape the focus of your grief and your worries. Parents of a young child with a life-limiting illness may struggle with making childhood as normal as possible for the patient and their other children amidst the trauma of the illness. A life-limiting illness in a young adult will complicate his or her need for growing independence and freedom. People who are parents of young children will be concerned about the impact of the illness and possible death on their offspring. Older adults may worry about a spouse or their legacy. The attitudes toward death of those who have reached an advanced age may be strongly affected by how they feel about their lives.
Questions for reflecting on stages of life:
• What are the most difficult losses for you at this stage of life?
• What do you worry about as you face a serious illness at this point in your life?
• What stage of life are your friends and family in, and how will this illness affect them?

 

Meaning of the illness

While your focus may be on the practical challenges of coping with your illness or that of your family member, you may also struggle with what the illness means. You may think about how you or your family member got the illness; you may remember others who had a similar illness and wonder if your experience will be like theirs. For some, life-limiting illness severely damages or destroys the meaning of their lives; for others it provides new opportunities to discover or create new meanings. You may need to change your hopes for the future in order to maintain a sense of meaning in the midst of the illness.
Questions for reflecting on the meaning of illness:
• What thoughts do you have about why this is happening to you?
• What is most important to you as you think about the future?
See also:
Finding Meaning and Purpose during a Health Crisis, and other articles in Spiritual Health.
 

Coping style

Each person has coping skills that have been learned through facing life’s difficulties. If these skills have helped you in solving earlier problems, they are likely useful now too. However, as patients become sicker, their ability and the ability of family members to cope with the illness may decline. Sometimes people have a natural tendency to avoid the disturbing realities of the illness. While this may reduce stress for a time and help you cope with crises, it is usually unhelpful over the long term. Plus it often takes a great deal of energy to avoid tough topics, and sometimes you may feel a sense of relief from opening up and sharing during difficult times.
Questions for reflecting on coping style:
• What has helped you cope with hard times in the past?
• What helps you cope when you feel overwhelmed by your illness?

 

Sense of self

Serious illness affects your sense of yourself by challenging your independence and control. The physical symptoms, emotional upheaval, interruptions to your social life, and changes to qualities that you considered important to your personal identity (such as your role in the home or at work, physical strength or fitness) may be distressing and impact your dignity.
Questions for reflecting on sense of self:
• How have you changed inside yourself in response to your illness?
• How has your illness affected your sense of yourself?

 

Relationship with health care providers

The relationship you and your family have with your health care team can increase or diminish the stress you experience. Difficulty in getting dependable care or information in a sensitive way can be a source of significant distress. When you are clear with them about what you and your family need, they can provide support and resources that will help you cope effectively with the illness.
Questions for reflecting on relations with health care providers:
• How well do you feel that your medical and other care needs are being met?
• How would you like to work together with your health care team?

 

Factors influencing stress presented in this section are adapted from this article:
Block,S (2006). Psychological Issues in End-of-Life Care. Journal of Palliative Medicine,9(3):751-772.

 

What your health care team can do

Talk to your health care team about the difficulties you are experiencing and what might be helpful.
 

Help in connecting with additional sources of support

Your health care team can refer you to social workers, counselors, spiritual care providers, volunteers, and group programs that offer counseling, emotional support, education (e.g. relaxation techniques), practical suggestions, and information (e.g. regarding financial benefits). The health care team can also help with referrals for in-home services, such as nursing visits, assistance with personal care and/or household tasks.
 

Medications

Over time, as you live with ongoing stress associated with your own or your family member’s life-limiting illness, you may develop symptoms of anxiety and/or depression. Sometimes, in addition to the approaches mentioned above, medications may be considered for symptoms that are particularly worrisome.

These are some of the symptoms of anxiety:
• excessive ongoing worry and tension;
• restlesness or feeling edgy;
• trouble falling or staying asleep;
• panic attacks, which include sudden onset of a racing or pounding heart beat, difficulty breathing, feelings of intense anxiety.

These are some of the symptoms of depression:
• feeling sad most of the time;
• difficulty concentrating;
• changes in appetite or sleep.
See also: Depression

It is important that you speak to your health care team about the symptoms you may be experiencing. They will help to determine if and what medication may be helpful to consider in easing the distress that you are experiencing.
 

Content reviewed September 2017

Coping with stress

The stressors in facing a life-limiting illness are challenging to cope with. Your personal history of coping, or what has worked for you in the past may or may not be enough to support you now. All people cope in their own way, and the following suggestions are not intended to mean that there is a right or wrong way to cope with stress. Among these ideas, you may find some that are helpful to you.
 

Recognize what you can and cannot change

It is important to distinguish between sources of stress that can be changed from those that cannot be changed. For example, if the main stressor is identified as something that can be changed (e.g. pain control, tension within family relationships) then you can reduce the stress by managing the cause. If the source of the stress is unchangeable (e.g. disappointment about failed treatment or inability to fulfill a dream or goal because of illness), you may find it helpful to identify resources to help you develop your coping skills to deal with the stress.
Questions for helping you decide which stressors you can and cannot change:
• Can something be done about the experience that is distressing you?
• If yes, can you picture changes that would reduce the amount of stress it gives you?
• Does the source of your distress seem unchangeable?
• If yes, what would help you to cope with it?

 

Ask for help

Friends and family
Many friends and extended family members are more than willing to help out when a family is facing a life-limiting illness, but they may not know what they can do. If you can identify areas in which you need help, and provide some concrete suggestions, people often welcome the opportunity to help. You can call upon friends or family members to provide help in these areas:
• practical support - doing tasks like washing dishes, running errands, mowing the lawn;
• emotional support - simply listening, or providing a shoulder to cry on;
• spiritual support - providing a supportive presence, praying;
• physical support - helping with tasks such as using a toilet, or turning in bed.

Some families find that some form of schedule works well, so that supportive family and friends aren't with you all at the same time (as this can cause additional stress). That way you or your family member will know when to expect help to be available. Having friends or family members available on an “on call” basis may also be very helpful.
Questions for reflecting on asking for help:
• Who do I have available in my family and friends network who can help support me through this?
• What are some ways that my network can help?
• How can I organize the network available to me? Can I ask one person from within my network to organize this help?


Professional support (medical)
Often when we feel unwell, the first person we seek help from is our family doctor. Our family doctor can be helpful in offering counseling support and/or connecting us with other health team members for emotional support or practical assistance.

Professional support (emotional)
A professional such as a counselor, social worker or spiritual leader may be able to provide you with unbiased support as you discuss your fears, your hopes and your concerns. Some people worry that seeking outside help from a professional may feel like one more burden, especially when struggling to balance all the other pieces of life. Think of it another way: seeing a professional is a way of taking care of yourself – a way of making sure that you can sustain the energy you need to enjoy life. Sometimes, speaking with someone who is outside your situation can help to normalize what you are going through. Sorting through your feelings with another person may also give you a new perspective and ideas about how to cope with all the changes you are experiencing.

Professional support (practical)
At times, having a professional such as a health care aide to help with practical tasks such as bathing, dressing, eating and toileting may help to reduce the stressors that the family is facing. Some people with life-limiting illnesses hire home support workers or others to do tasks such as cleaning the house or walking pets. If you are at home, visiting nurses can be a tremendous support for symptom management and as an additional coping resource. You may be able to use a palliative care / hospice program in your area to provide you with support and resources such as health care aides, home support workers or registered nurses.

Financial help
Government-funded palliative care programs and services are available in many parts of Canada; if available, they typically do not charge for their services. Some provinces offer financial assistance with the cost of medications for patients registered in palliative care programs. As well, many local hospice palliative care organizations offer professional and volunteer services free of charge for practical assistance, emotional support, and bereavement follow-up. There are other patient, caregiver, and survivor benefits available at the provincial and national level to help to ease the financial strain when you or your family member has a life-limiting illness.
See also: Patient Benefits and Caregiver and Survivor Benefits
 
 

Reorganize priorities

It may be helpful to think about what your goals are for the day and direct your time and available energy towards achieving those goals. Your goal may be to walk in the garden, to sit in bed and eat lunch, or to spend some time with a family member or pet. You may want to think about your energy just like money in a savings bank and only “spend” your time and energy on the things that are most important to you.
Questions for reflecting on priorities:
• What are the things that are most important to me?
• What is one goal that I can set for myself that will make today better?
• Where do I want to direct my energy today?

 

Develop ways to reduce stress

Some general stress reduction techniques may help to reduce the distress you are feeling. For example, you can focus on taking some deep breaths to help you to feel more relaxed. You also could use any of the following activities to reduce some of the distress you are feeling:
• yoga
• meditation
• guided imagery
• listening to music
• progressive muscle relaxation
• massage
• exercise (if possible)
• having a bath
• putting on scented lotion
• watching a funny TV show or movie
• spending time with nature or pets
• taking time to be by yourself
• finding a way to be creative
• writing your thoughts in a journal
• creating a less stressful environment

Not all of these techniques will be helpful for all people. Choose what you think will help you to reduce the stress you feel, or think of your own.
Questions for reflecting on ways to reduce stress:
• What do I enjoy doing?
• What are some ways that I have coped with stress in the past?
• What do I feel would help me right now?

 

Content Reviewed September 2017