Family Adjustment to Aphasia
Richard S. was a senior manager at a small company and next in line for a vice presidency. His wife worked as a free-lance writer. They had three active teenagers. Life had its ups and downs, but overall it was quite comfortable-happy marriage, nice home, occasional travel, and a close circle of friends.
One night that all changed. Richard had a massive stroke that left him with a paralyzed right arm and leg. He also had aphasia. He could not speak intelligibly, and he understood little of what people said to him. He had difficulty reading and writing. He also had trouble swallowing. When his children visited him in the hospital, he couldn't follow their activities and busy schedules. He felt so removed from them.
Sara was worried about Richard's health, but she had other worries, too. How would the mortgage be paid? Would she be able to work, raise the children, and assume her husband's household responsibilities? Who would she rely on? Richard always gave her good support and advice, but he couldn't now. What about the physical intimacy they enjoyed? Sara felt she was being selfish, but she also felt overwhelmed, alone, and angry that this had happened to her. She even blamed Richard-if only he had watched his diet and exercised more!
Changes that result from aphasia are sudden, unexpected, and unwanted. Adjustment is difficult for the person with aphasia. It also presents a great challenge to the family.
There may be tension among family members and feelings of frustration and helplessness. The condition may seem hopeless. Children may feel neglected and may find it difficult to have a parent dependent on them.
"An individual's aphasia is a family problem."
- Davis, G. A. (1983). A survey of adult aphasia. Englewood Cliffs, NJ: Prentice Hall, p.290
With problems other than aphasia, conventional advice is to "Open the lines of communication" and "Talk it out." However, diminished communication ability is the defining feature of aphasia. Consequently, the main way to adjust to most problems is blocked.
Despite communication barriers, there are ways that family members can help their loved one with aphasia as well as helping themselves.
Families need information about stroke and aphasia as a first step in the adjustment process. A speech-language pathologist certified by the American Speech-Language-Hearing Association (use ASHA ProFind to find one near you) can conduct a comprehensive evaluation of language and related abilities and provide general reading material and information about the specific communication needs of the person with aphasia. The speech-language pathologist can also explain the personality changes that may follow stroke and make referrals to other professionals. Because different problems arise at different times, this information sharing should be an ongoing process.
Family members easily recognize expressive language problems in aphasia-difficulty finding the exact word, using an incorrect or "made-up" word, making mistakes in grammar, or unintentionally using profanity. But they may not realize that problems in understanding language also accompany aphasia. Once they grasp this fact, they may feel less frustrated when their loved one appears inattentive or uncaring.
Following an in-depth evaluation, the speech-language pathologist can provide realistic expectations for the recovery of communication skills. Recovery frequently depends on the severity of the aphasia and the area of the brain that has been damaged.
Feelings of frustration at the inability to communicate can lead to anger and depression. Persons with aphasia may tire easily and show extreme emotional fluctuations and inappropriate emotions-laughing when something isn't funny or crying for no apparent reason, particularly early in the recovery process. They may also seem very self-absorbed and show an intense need for an unchanging routine. Feelings of guilt and embarrassment are common.
Family members may also feel strong emotions-anxiety, anger, confusion, depression, despair. The marriage changes, and partners may feel a sense of loss. It is natural to go through a grieving process when a family member develops aphasia, and family members need to be helped through this process.
There are some strategies that family members can follow to help them cope with such an emotional upheaval.
- Join a self-help group. At the national level, the National Aphasia Association is available. At the local level, support groups for spouses and other family members, such as stroke clubs sponsored by the American Heart Association, can suggest coping strategies and help people feel less alone. Local hospitals also may have stroke clubs. Friends and other family members may be sources of support as well.
- Involve the person in family decision-making as much as possible.
- Give the person time to talk. Don't speak for him/her.
- Simplify sentence structure, and reduce your own rate of speech.
- Use natural gestures to help the person with aphasia understand you.
- Communicate through touch.
- Acknowledge and verbalize the frustration your loved one feels at not being able to communicate effectively.
- If necessary, make more comments and responses rather than asking questions or making demands. You may need to assume more responsibility for starting a conversation and keeping it going. When a misunderstanding occurs, paraphrase or repeat more simply. A speech-language pathologist can show you ways to help with newly learned communication strategies. If an alternative form of communication is recommended, such as a communication board, you should be directly involved in the planning process.
- Be actively involved in continuing evaluation and treatment. Inform the speech-language pathologist about strategies that have worked for you and your family.
- Take care of personal needs-get enough sleep and maintain social contacts.
- Keep up with leisure activities. Consider this necessary rather than selfish.
- Avoid making other major life changes, like moving, at this time.
- Seek additional counseling services as necessary.
Family members also can help the person with aphasia develop new skills to compensate for the communication problems. Some suggestion include:
- Continue to talk to the family member with aphasia.
- Tell the speech-language pathologist about the means of communication that the family finds best.
- Talk to the person as an adult and not as a child.
- Have appropriate expectations for speech and language, but accept attempts at communication through whatever means possible. The person with aphasia may be able to communicate successfully using gestures instead of speech, or as a supplement to speech.