Archbishop's web site Denver Catholic Register Parishes Catholic Pastoral Center
August 7, 2002
When stroke hits a family: Survival tips for coping
Focus on progress made and exercise patience, expert says
By Lisa M. Petsche
Strokes are the leading cause of long-term adult disability in the United States. Approximately 600,000 Americans a year suffer one.
Only 10 percent of victims recover completely; 25 percent are left with minor impairments, while 50 percent experience moderate to severe disability.
Stroke can result in not only physical impairment but mental deficits as well. Areas of functioning that may be affected include mobility, personal care, communication, mood, memory and problem-solving ability. Paralysis or weakness on one side of the body is the most obvious sign.
Without a doubt, stroke is a life-altering experience — not only for its victims but also for their loved ones.
Like survivors, family members initially experience a wide range of conflicting feelings. These may include shock, relief, denial, fear, anxiety, anger, sadness and frustration. It is a time of grieving losses. Life may never return to the way it used to be, and plans for the future may have to be revised.
In the midst of such upheaval, relationships within a family often become strained.
Impaired speech or language comprehension can make it difficult for the survivor to successfully communicate with loved ones. Chemical changes in the brain can also cause what's known as "emotional lability" — sudden, uncontrollable laughing or crying, often at inappropriate times. This causes some awkward moments in social situations.
In addition, some people undergo a personality change following stroke. A confident person may become slow and cautious or, conversely, a cautious person may become impatient and impulsive. Depression is also common, and may affect motivation for rehabilitation. Sometimes it's manifested by irritability, other times by indifference and withdrawal.
Such changes can lead family members to feel that they no longer know their loved one very well. Furthermore, they often feel as if no one else understands what they and their family are going through. It can make for a lonely time.
Uncertainty about the future — for example, how much functioning their loved one will recover and whether they will be able to return home — also contributes to stress. One result can be depression.
Spouses or adult children may be overwhelmed by the number and type of decisions that need to be made, such as those regarding rehabilitation options, equipment purchase, home modifications and other discharge-planning considerations. They often have to take over practical tasks such as managing finances, preparing meals and housekeeping. In addition, they may be expected to assume the role of hands-on caregiver, assisting with dressing, grooming, bathing and toileting. Feelings of resentment may surface, closely followed by guilt.
Coping strategies
How can family members keep stress manageable during such a challenging time? Following are some survival tips:
•Learn as much as possible about stroke, and educate family and friends to help them understand.
•Include your loved ones in conversations, even if their ability to participate is limited. If communication is very difficult, ask the hospital speech-language pathologist for suggestions.
•Encourage participation in decision making.
•Attend some therapy sessions with your loved ones. Find out what they are and aren't able to do, then avoid doing things for them that they're capable of doing themselves. On the other hand, don't push them to do things they're not capable of — this will only cause frustration and embarrassment.
•Focus on progress made, however small the steps, and encourage your loved ones to do the same. •Continue to involve your loved ones in family activities and community events. If they rely on a wheelchair to get around, have them registered with the accessible transportation service in your area (a physical therapist or social worker can facilitate this). •Take things one day at a time so as not to get overwhelmed. •Pray for guidance and strength in dealing with challenges. •Find at least one person you can talk to openly, who will listen and empathize. Consider joining a support group for families of stroke survivors. •Look after your physical and mental health; the latter includes staying connected to friends and outside activities. In order to do so, schedule a regular break from visiting in the hospital or caregiving at home. •Ask other family members to help out as needed. If your loved one will be returning home or is already home with you, find out about relevant community support services and make use of them. Don't take on every responsibility single-handedly, or you'll burn yourself out. •Be patient with your loved one and yourself. Allow plenty of time to adjust to the changes in your relationship and your lifestyle. Look for ways to include laughter and joy in each day — this will enhance your relationship and help foster a positive outlook. Lisa M. Petsche is a health care social worker and freelance writer.
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