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Help for Caregivers Caregivers Needs Stroke is more likely to permanently alter the mind and body of an individual victim and, with them, the life of an entire family, than any other single type of disability. Day to day family life may be changed forever. A stroke requires that the caregiver must somehow set aside their own shock and fear to support the victim, whose needs may seem to far outweigh their own. The caregiver, however, must meet the enormous challenge of caring for the physical and emotional needs of the survivor without neglecting his or her own needs. Information and Education "Lack of information heightened our grief. I had the feeling nobody cared."* In the event of a stroke, caregivers of a stroke survivor need:
Sources of support include:
The Work of Caregiving Caregiving is hard, tiring, physical work. Too frequently, little thought is given to the ability of the caregiver to deal with the burden of caring for the survivor. Caregivers and their friends and family must consider:
Family caregivers should learn to ask for and accept the help they need to fulfill their role. Don't try to do it alone. Helping yourself by helping the survivor
Caregivers need to look after themselves first. Otherwise, the quality of care that they are capable of giving, their relationship with the stroke survivor and their own quality of life can suffer greatly. Relationship Change Physical disability, communication problems and personality changes in a stroke survivor may cause profound relationship changes, placing great stress on caregiving relationships. After a recent stroke, a survivor is often incapable of responding to anyone's needs but his or her own, and may show little appreciation of another's needs or efforts. Spouses must often come to terms with what may be permanent changes in their partners, such as depression, fatigue, lack of strength, frustration, egocentricity and thoughtlessness. The partnership the caregiver once shared with the survivor may also be changed forever - they may now be the shopper, cook, nurse, financier, chauffeur, handyman and more. These role changes are potentially a source of great stress for the caregiver of a stroke survivor. The Stress of Caregiving "Words are inadequate to describe what I felt. It was the worst day of my life."* For a stroke survivor, the experience of stroke is terrifying and disorienting. The spouse and family, however, are thrown into a situation that is no less frightening, though they must suspend their grief, fear and frustration in order to help the survivor. Caregivers generally have very demanding expectations of themselves. After the first crisis of a stroke has passed, and the caregiver and stroke survivor have settled into a routine, the stress of caregiving may emerge as caregiver irritability, anxiety, numbness or fatigue, or they may feel that they just can't manage. Caregivers may become distant and detached, or experience health problems. The occasional expression of these feelings is alright - they are natural and normal. The caregiver has a right to feel them and should not feel guilt or embarrassment because of them. They are a warning that it's time to reduce stress. If you recognize yourself in any of the following ways of distorted things, a useful way of clarifying your thoughts is to have someone you trust listen quietly as you explain your situation to them. In this way, these distortions in your thinking will become clearer to you.
We are the ones who encourage or demoralize ourselves. Many avenues of research show that flexibility is the key to successfully dealing with the tremendous stress imposed by a stroke in the family. Don't be a martyr. Give yourself encouragement, compassion and understanding and, whenever needed, a break. Caregiver Survival Checklist
*Quotes contained are by participants from a caregiver workshop help in Burlington in 1995, involving the Community Health Services Centre, Burlington SRA, Fellowship of Stroke Survivors and the United Way. For more information about stroke recovery, contact: Stroke Recovery Canada
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