Help for Caregivers

Caregiver 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 victim need:
information about stroke, and its impact, prognosis and the rehabilitation process,
education in relationship to the needs, physical and psychological, of stroke victims/survivors,
practical assistance in enhancing caring and coping skills,
increased awareness of available therapeutic and social service supports, and
to share ideas, information and coping methods with others dealing with similar issues.

Sources of support include:

information produced by hospitals, regional information services, seniors' directories, municipalities, regional health councils, and libraries,
After Stroke, which provides information and peer support to caregivers and survivors, and allows the sharing of experience and learning, and
caregiver support groups based in community centres, churches, synagogues and so on.

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. To be taken into account are:

the ages and health of the caregiver and care receiver,
the gender of the caregiver - men are not generally socialized to give care,
the financial status of the people involved, and
safety concerns of caregiving-the ability of the caregiver to handle emergencies, such as a fall.

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
Organize a realistic and flexible schedule for the survivor, incorporating rest time.
Set specific realistic goals-this will boost the survivor's confidence and self-esteem.
Help the survivor stay in touch with the world he or she has known.
Encourage more responsibility and less dependency in the survivor. Greater independence is good for a stroke survivor's well-being, and reduces demands on the caregiver.

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 their 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 victim, the experience of stroke is terrifying and disorienting, but the spouse and family are thrown into a situation no less alien, and 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 stresses 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 thinking, 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.

Overgeneralization thinking that an isolated caregiving mistake makes you a poor caregiver
All-or-nothing thinking seeing your efforts either as successes or failures
Negativistic thinking ignoring the positive and focusing only on the negative
Catastrophizing exaggerating the importance of your own failures or someone else's success

We are the ones who encourage or demoralize us. Many avenues of research show that flexibility is the key to successfully dealing with the tremendous stresses 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

Take one day at a time
Accept your limitations
Learn to ask for and accept help
Don't feel guilty about your position
Don't bottle up negative feelings-talk about them to someone you trust
Have a daily routine and stick to it
Take time for yourself every day
Keep your sense of humour
Look after your health-get plenty of rest, exercise daily, eat a nutritious diet, and see your doctor when stress builds up
Take advantage of local support groups (After Stroke)
Develop a caregiver peer support network (After Stroke)
Remain socially active
Find a caregiver respite program in your community
Consider modifications to the home and assistive devices
Consider nursing and housekeeping services

Quotes contained are by participants in a caregiver workshop held in Burlington, Ontario in 1995, involving the Community Health Services Centre, Stroke Recovery Burlington, Fellowship of Stroke Survivors and the United Way.