Living with and caring for someone with a life limiting illness is a difficult task. Family members are often surprised at the many thoughts and feelings that arise. These feelings may be intense and overwhelming. It helps to know some of the typical healthy reactions to such a stressful time. These feelings may recur as changes occur in the patient’s condition and care needs. Each member of the family will respond in their own way.
As changes occur, there may be feelings of:
- Helplessness and hopelessness with increases in care needs
- Shock and numbness with any sudden change in condition
- Yearning for things to be the way they were before
As stresses increase:
- Anxiety and fear are common in three areas in particular:
- Carrying on with the necessary tasks of living and caregiving
- Ability to cope after death
- Heightened awareness of your own mortality
- Loneliness increases as family roles change and the patient becomes dependent on care
- Edginess and irritability may surprise you in relating with other people
- Fatigue is sometimes experienced as apathy or listlessness
As emotions arise:
- Sadness is the most common feeling and may or may not be expressed by crying
- Anger is frequently experienced and may be confusing. It usually comes from two sources:
- Frustration with the situation because there is nothing that can be done to prevent the progression of the illness
- Anger, irrational or not, at the patient for getting sick
- Guilt is a nagging feeling often accompanied by a need to review what has happened or what was neglected.
- Worrying about whether you are doing what is best is a normal part of caregiving
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