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How Communication Issues Affect Caregivers

It is breakout time in a stroke support group.  As the caregivers gather away from the stroke survivors, the newest group member, Janine, begins to cry as she tries to explain how frustrating it is to not be able to communicate easily with her husband Richard. “I’m never sure what he wants or what is upsetting him.  When I try to talk about what he is feeling or what I am feeling, I have to repeat myself so many times, I simply give up or he ends the conversation. Yet when we’re with friends, he always turns to me to talk for him…to order the meal, to explain what he is trying to say. If I get it wrong, he becomes angry. People don’t want to be around us anymore. It is too uncomfortable.”

Other group members begin nodding as she talks, offering empathy and sharing their own stories, helping Janine by giving her a sense that she is not alone in her experiences or feelings. Another wife describes her exhaustion at the end of the day when she returns home from work. She used to look forward to those times when she could share her day and vent after a particularly tough one. Now, she admits it can sometimes be too effortful to have a “conversation,” a problem complicated by the fact that her husband is often waiting anxiously to tell her something. She feels guilty about her “failure” to be a better communication partner and a better life partner. She feels they are drawing apart, not coping together.

These are just some of the ways that communication issues can complicate caregiving and can place strain on the caregiver and on the relationship that existed before a stroke. Caregiving is tough under any circumstances. Sometimes, the stress and strain of caregiving creates physical and emotional health problems for the caregiver. Fortunately, there are a growing number of resources with suggestions about how caregivers can cope with the caregiving burden in general and maintain their health and well-being.

For stroke survivors, caregivers are often the unsung heroes. Each stroke presents unique challenges. When a stroke results in one-sided paralysis, the caregiver may need to assist with everyday activities like dressing or bathing. There may be associated role changes - perhaps the caregiver must now take over all driving or assume responsibility for aspects of home upkeep (mowing lawn, etc.) previously managed by the stroke survivor. Some strokes can alter behaviors, at least temporarily. The person may become more emotional, more impulsive, less sensitive to the needs of others. For some caregivers, these life changes can be overwhelming, while others take change in stride. 

When the stroke results in a communication disorder, such as aphasia, every aspect of the caregiver’s life can be affected. Because the communication breakdown is not as easy to see or imagine as paralysis, we don’t always acknowledge the profound effect the aphasia has on the lives of everyone concerned. Yet talking and sharing are essential skills in dealing with health crises and life change.

Textbooks could be written on the subject of how communication issues complicate caregiving. The following points highlight the potential impact of a stroke survivor’s aphasia on the caregiver. Everyone working with the stroke survivor and family needs to be sensitive to the presence of some of these issues.

  • Communication is our primary vehicle for sharing feelings, fears, wants and needs. A communication disorder can mean the caregiver is not always able to understand what the stroke survivor wants, needs, and is feeling. The result may be frustrating for both conversation partners and a sense of inadequacy. The caregiver may also not be able to talk about what the she needs or feels if the person with aphasia has significant comprehension problems.
  • Communication issues affect relationships at a time when strong relationships are most needed. There is sometimes a loss in sense of intimacy that comes with everyday sharing and conversation, as well as a loss of selfhood in the relationship.
  • The communication burden often falls on spouse or significant other of a stroke survivor with aphasia. Having to be the primary communicator for the person with aphasia, essentially translating for him in interactions with others, can be exhausting and can disrupt the caregiver’s own interactions with others.
  • Additional communicative burden can be placed on caregivers by healthcare providers.  Speech-language pathologists often ask the caregiver to modify communicative interactions and to adopt new communication techniques. It can seem to caregivers they are being asked to become the perfect communication partner, changing a lifetime of communicative patterns seemingly overnight, with little training and limited sensitivity to their own needs and responsibilities.
  • Communication is the primary tool all people use to plan, share, and/or work through problems. At a time of tremendous life change, this critical tool may have limited effectiveness.
  • As others become increasingly uncomfortable with the communication challenges of the stroke survivor, the social life of the caregiver is also affected. For example, going out to eat and visit with friends may occur less frequently over time. Easy spontaneous flow of conversation is lost as the person with aphasia requires significant modifications and accommodations in order to participate in the social interaction.  It can become easier to avoid such situations than to deal with the stresses created.

If any of these bulleted points ring true for you, as a caregiver, or for a family you are working with as a healthcare provider, take the time to explore these issues. Recognize that the fabric of everyday life and everyday validation is dependent on communication about all sorts of topics - not just the big important ones. Acknowledge caregivers’ feelings and concerns and let them know they are not alone, not a “bad” person for struggling occasionally with negative thoughts about situations and about the stroke survivor.  No one benefits if these feelings and issues are ignored or buried. Address caregiver issues openly.

Finally, remember that each stroke, stroke survivor, caregiver, and communication disorder is unique. For some stroke survivors, there are no communication challenges or the existing ones have little effect on everyday life and interactions. While this article may seem to focus on the negative impact of communication disorders, the truth is that many caregivers manage communication challenges effectively. The take-home message is that it is important for caregivers, healthcare professionals, and stroke survivors to recognize why challenges exist, explore them openly, and find ways to reduce communicative strain and caregiver burden.

By: Barbara B. Shadden, Ph.D., CCC-SLP, BC-ANCDS, University Professor Emeritus, Program in Communication Disorders, University of Arkansas

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"Because the communication breakdown is not as easy to see or imagine as paralysis, we don’t always acknowledge the profound effect the aphasia has on the lives of everyone concerned."

More on Aphasia

For more information on understanding an managing aphasia, explore the articles in Stroke-Network.com's Speech & Communication section.

Understanding Aphasia

Everything a stroke survivors needs to know to understand the different types of aphasia, diagnoses and initial treatment strategies. Read more here.

The High Price of Aphasia

For stroke survivors coping with aphasia, the costs can be personal, professional, and financial. Read more here.

Tools for Improving Communication

Four easy tools that help stroke survivors improve communication and comprehension. Read the complete article here.

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