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ALS Registry

Symptoms of Caregiver Burnout

A volunteer should report the situation to the assigning organization when the primary caregiver shows any of these signs:

  • Disrupted sleep patterns, including insomnia or habitually oversleeping never feeling rested, even when the primary caregiver has managed to have a full night’s sleep; sleep troubled by disturbing dreams or nightmares.
  • Altered eating patterns, including not being able to eat or overeating; significant weight gain or loss.
  • Increased sugar consumption or use of alcohol or drugs.
  • Increased smoking or a strong desire to start again after having quit.
  • Frequent headaches or sudden onset of back pain; increased reliance on over-the-counter pain remedies or prescribed drugs.
  • Irritability.
  • High levels of stress or anxiety.
  • Impatience.
  • The inability to handle one or more problem or crisis.
  • Overreacting to commonplace accidents such as dropping a glass or misplacing something.
  • Overreacting to criticism.
  • Overreacting with anger toward a spouse, child or older care recipient.
  • Alienation, even from those who offer relief and help.
  • Feeling emotional withdrawal.
  • Feeling trapped.
  • Thinking of disappearing or running away.
  • Not being able to laugh or feel joy.
  • Withdrawing from activities and the lives of others around the primary caregiver.
  • Feeling hopeless most of the time.
  • Loss of compassion.
  • Resenting the care recipient and/or the situation.
  • Neglecting or mistreating the care recipient.
  • Frequently feeling totally alone, even though Mends and family are present.
  • Wishing simply “to have the whole thing over with.”
  • Playing the “if only” game: Saying over and over “If only this would happen” or “If only this hadn’t happened.”
  • Loss of hope, purpose and meaning.
  • Thinking of suicide as a means of escape.

Adapted with permission from Preventing Caregiver Burnout, James R. Sherman, PhD Pathway Books, 1994, pp.7, 11 – 12. 

The Three Stages of Caregiver Burnout

Stage One - Frustration

The primary caregiver expresses continuing frustration and disappointment over the care recipient’s deteriorating condition or lack of progress. The primary caregiver has difficulty accepting that the quality of care and effort has nothing to do with the actual health-related decline or mood of the care recipient.

Stage Two - Isolation

The primary caregiver struggles to maintain a sense of purpose in working so hard to provide care. He or she may express feelings of loneliness, being unappreciated, second-guessed or criticized by other family members and the care recipient. Reality of the care recipient’s condition and the limitations of caregiving are not accepted. The primary caregiver is reluctant, unable or unwilling to reach out for help from others.

Stage Three - Despair

The primary caregiver feels helpless and adrift. The primary caregiver is unable to concentrate and loses effectiveness as a caregiver. He or she is no longer excited about the progress or response of the care recipient to quality care. As a consequence, the primary caregiver neglects personal care and well-being, loses interest in the community, social contact and respite activities, such as reading books, watching movies or other stimulating activities.

Adapted with permission from Preventing Caregiver Burnout by James R. Sherman, Ph.D., Pathway Book, 1994, pp. 8 - 10.

Coping with Burnout

Being a caregiver of someone with ALS is a very important role. It usually involves a number of tasks that can be very time consuming, and can require a great deal of effort. If we do not learn to recognize that certain tasks and expectations can take their toll on us, regardless of what role(s) we play in life, we may find ourselves headed down the path of burnout.

Burnout can be defined as exhaustion of physical or emotional strength or motivation, usually as a result of prolonged stress. Burnout may also be as subtle as simply no longer feeling “connected” to what it is we are doing. This can apply to a number of situations, such as the workplace, with family, or activities with a group we belong to. A key to guarding against burnout is to be willing to take a close look at our lives, in order to become more conscious of our thoughts and behaviors. Some practical questions to ask ourselves are “What causes burnout?”, “How do I know if I am burning out?” and “What can I do to prevent burnout?”  We will attempt to answer these three very important questions.

Common Causes of Burnout

Perfectionism: A perfectionist continually focuses on what needs to be improved, rather than what has been accomplished. When this becomes our focus, we may never feel that we have succeeded at anything.

Never-ending tasks: Never-ending tasks describe work that appears to lack both a beginning and end. This can lead us to feel as if we have no closure, and therefore have not completed anything.

Work overload: Work overload is when we have more work to do than we can complete in a given amount of time. When we operate this way, we set ourselves up for failure.

Impossible tasks: Impossible tasks suggest that we are physically unable to do something we may feel we should be able to do. If we believe that we should be able to do something that we cannot do, we automatically feel like we have failed. It is a no-win situation.

Multiple roles: Many of us play a number of important roles in our lives, such as wife/husband, mother/father, caregiver and breadwinner. It is easy to feel overwhelmed when we are trying to play multiple roles in our lives.

Self-sacrifice: Self-sacrifice occurs when we agree to take on certain tasks despite our true desire to complete them. When we continually agree to things that we would rather not do, we inevitably become resentful.

Unspoken feelings: Any emotion that is unexpressed creates “blocks” in our ability to complete tasks and to function in relationships. If we do not speak about how we are truly feeling in a situation, those emotions surface in other, unproductive ways such as being chronically late, frequently forgetting things, or reacting in ways that are inappropriate to the situation.

Common Symptoms of Burnout

It is important to remember that we are not alone in our experiences with burnout. At some point in time, it is likely that most of us will experience one or more of the following symptoms:

“Negative” emotions: “Negative” emotions are the feelings that are often the least comfortable to feel. One symptom of burnout is consistent “negative” feelings such as anger, anxiety, dissatisfaction and guilt.

Interpersonal problems: We might experience conflict with others in the form of emotional outbursts, overreacting, hostility and withdrawal.

Health Problems: Some common health problems associated with burnout are frequent insomnia, fatigue, headaches, backaches, lethargy and high blood pressure.

Poor performance: We may become less productive due to boredom, lack of enthusiasm, feelings of fear or an inability to concentrate.

Substance abuse: Another symptom of burnout is a marked increase in the consumption of alcohol and/or other drugs, cigarette smoking, caffeine and food.

Workaholism: We might be inclined to work more hours due to feelings of inadequacy, believing that the more we work, the better we will feel.

Depression: Depression is the suppression of emotions. We may be depressed if we notice an overall feeling of hopelessness and meaninglessness.

Loss of self-esteem: Simply stated, the loss of self-esteem equals a decrease in self-confidence.

Solutions to dealing with burnout

Once we become more aware of why we experience burnout, and the various ways burnout manifests itself, we can begin to focus on ways to guard against it. It is time to develop a plan of action!

Take care of yourself:

  • Regularly feed your body nutritious foods
  • Get sufficient rest
  • Exercise routinely
  • Pay attention to your body’s signals of stress

Practice stress-reducing strategies:

  • Breathing exercises
  • Yoga
  • Progressive relaxation techniques
  • Massage
  • Meditation
  • Tai chi

Develop a strong support system:

  • Surround yourself with friends/family by whom you feel supported.
  • Attend a support group where you can share your concerns and feelings.
  • Create a support/discussion group at work where you can share your concerns, while being willing to talk about your part in the problem and the solution.
  • Utilize your company’s Employee Assistance Program (EAP) to receive support/counseling or referrals for services that can assist you.
  • See a counselor or therapist if you are in need of more extensive mental health support.

Create a fulfilling life:

  • Make conscious decisions about how you want to spend your time.
  • Say “yes” to what you want to say “yes” to, and say “no” to what you want to say “no” to.
  • Acknowledge your priorities and actively build your life around them.

The key to avoiding burnout is to continually seek balance in our lives. The more informed we are about our own issues with burnout, the better armed we will be to take care of ourselves. Consequently, the better job we do of taking care of our own needs, the more we can be physically, mentally, and emotionally available to those around us.

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