Expanding Comfort Zones
Over the years of interviewing stroke families, one experience we’ve heard of repeatedly is how friends and family tend to dwindle, and sometimes disappear, after a stroke. It seems to happen even more often when aphasia is involved.
Humans are language-making creatures, after all, and when language is taken away because of a stroke in the brain’s left hemisphere, life can get frustrating, at the very least.
As fluency evaporates,sometimes friends do too.
It is no mystery that friends and family drift — they feel awkward because they see how hard it is for the survivor to communicate. They don’t want to aggravate him or her nor do they know how to help. For the most part, they don’t understand that aphasia is a language disorder, not a thinking or reasoning disorder. We are all so accustomed to speaking that people don’t naturally understand that intelligence and emotion are distinct from speech. “It’s not intuitive that there is a difference between language and thought,” said Dr. Barry Jacobs, director of behavioral sciences at Crozer-Keystone Family Medicine Residency Program in Springfield, Pa. “The person they love is in there but can’t access language. It’s like the person has been away in a foreign country and forgotten how to speak.”
Most people need to be educated about aphasia; they also need some suggestions about how to communicate with a survivor who has aphasia. We talked with the Citywide Stroke Support Group in Oklahoma City, including two speech therapists, about how those with aphasia can restore relationships and re-enter society. (The group has been meeting monthly for 20 years.) They made several suggestions about what caregivers can do to help others understand the situation.
1. Let people know that aphasia hasn’t changed the survivor’s intelligence; they still know what’s going on and are just as smart as before.
2. Explain that having aphasia doesn’t mean that survivors have lost their hearing; speaking more loudly isn’t generally helpful.
3. Assure them that aphasia is not contagious! When a person is not accustomed to being around someone who can’t speak, or has difficulty speaking, it may be uncomfortable or even a bit scary. People may be afraid that such a thing could happen to them, concerned for the survivor or afraid of “doing something wrong” while attempting to communicate with the survivor.
4. Educate people – let them know how the stroke has specifically affected the survivor’s communications abilities, whether that means irregular speech, lack of understanding, misstatements or struggles to find the right words.
Use these resources to help in your education efforts:
1. Give friends and family members written information to help them understand the situation. Encourage them to ask questions. The American Speech Language and Hearing Association has developed a quick and easy educational tip sheet that you can download. Highlight the information in the sheet that is specific to your loved one’s experience.
2. You may also encourage friends and family to visit the “aphasia simulator” at aphasiacorner.com/aphasia-simulations. Developed by speech therapy professor Dr. Jackie Hinckley and Aphasia Corner, this simulator helps those without communication challenges better understand what it’s like from the survivor’s point of view.
“When meeting people for the first time, I let them know that the stroke has limited Jake’s speech, but he is still able to understand what is asked of him and can be involved with all conversations,” said Deanne Jacobs. Her husband, Jake, had a stroke in August 2010 that caused aphasia severe enough that he had to retire early from his work as a professor in the College of Pharmacy at Oklahoma University. They are members of the Citywide Stroke Support Group.
Dr. Jacobs of Crozer-Keystone uses a hardware/software analogy to explain aphasia. “Dysarthria, paralysis of the lips or tongue, is a hardware problem,” he said. With aphasia, the survivor’s language software has been corrupted. Some of the program may work, but most of it does not. “So we have to use the program the best we can,” he added, “knowing that the person can’t reach in there and get the words they want to get when they want. That explanation seems to suffice for most people.”
Should They or Shouldn't They?
Dr. Jacobs and the Citywide Support Group disagreed on whether the survivor should be present when friends and family are told about the survivor’s aphasia. Dr. Jacobs thought it was better to have the initial conversation outside the survivor’s presence. “I think most people lack understanding of and fear neurological problems, particularly language issues,” he said. “I believe that having the caregiver explain the nature of the problem and offer helpful tips decreases the responses of anxiety and even withdrawal of friends and family members. However, once that initial conversation takes place, the survivor should be involved in helping coach friends and family members to communicate effectively with him or her.”
The Citywide Support Group felt strongly that the survivor should always be included in this conversation. They felt those initial conversations should be in small groups of two or three so the survivor doesn’t feel overwhelmed with too much cross conversation. Ask the survivor what works best to make it easier to communicate. Perhaps most important, they said, “Have a sense of humor!”
Deanne Jacobs strongly agreed with her support group that survivors should be present. “It would be unfair to have Jake think that others are talking about him,” she said. “However, if too many people are involved at once I think the survivor gets more flustered with everyone trying to help.”
Ideally, the survivor and caregiver should decide together what the best approach should be for their specific situation and relationships with others.
Diminishing Discomfort in Others
As unfair as it may seem, it is up to caregivers and survivors to diminish the discomfort that friends may feel. If left unaddressed, that discomfort can become a reason for friends to stop coming around. “I know some friends have drifted away since the stroke,” Deanne Jacobs said, “I feel sad that Jake can’t have the same relationships, but I understand how difficult it is to be the only one who carries on the conversation.” She lets others know that Jake still wants to see them but just can’t find the words. “I know he is willing to try to communicate, but he is just fine listening to others talk.”
The members of the support groups had several suggestions for helping others feel more comfortable:
1. Reassure friends and family that the person with aphasia still wants to be included.
It is not the survivor’s role to make others feel comfortable. The survivor is going to feel frustrated no matter what.
2. Let people know that it’s all right to talk with the survivor, even if he or she may not fully understand what is said.
3. Inform friends and family of other helpful ways to communicate with the person, e.g., writing, gesturing, using pictures and communication tools, like an iPad.
4. Encourage friends and family to relax, even though they may be interacting a little differently. It’s not difficult, just different.
Dr. Barry Jacobs
Survivor Ken Carter of Hartford, Conn., had a stroke in 1994 and still has aphasia. He has found that it puts people at ease when he tells them upfront to help him by suggesting a word when he is having difficulty.
Dr. Jacobs suggested that caregivers can model how new communication partners can support the survivor more effectively — slow down, use short phrases, offer cues or use drawings or assistive devices.
Deanne Jacobs uses these techniques with Jake when they are with friends. “If I start a word he can usually get the phrase out,” she said. “He can sometimes write the word, but he cannot always find the right word on his own.”
Creating Positive Outcomes
At Stroke Connection, we’ve talked with many stroke families dealing with aphasia for years, so we know it is possible to have a meaningful relationship despite having a communication disorder. It will, however, be a different relationship because, as Dr. Jacobs points out, aphasia is inherently frustrating.
Part of that, Deanne Jacobs contends, is that “I am able to talk about my feelings, but Jake isn’t.” She can ask him questions, and he can answer yes, no or maybe, but elaboration is difficult. When they are with friends and someone asks her how Jake is doing, “I always direct them to ask the question to him, and let him do as much of the talking as he can,” she said. “If he nods to me I continue and finish the statement. I let them know that he may not talk much, but he knows what’s going on.”
For the best result, she has found it helpful to model speech that is most likely to produce a positive result. For instance, “it is always important to make sure that you ask one question at a time and wait for an answer before going further,” she said.
The Citywide Support Group asserted that it is important for the survivor to be included in social situations. “Have fun,” they said. Play charades or Pictionary where everyone is non-verbal. Or go bowling, hiking or people-watching at the mall.
Other suggestions for positive outcomes from the support group: Be patient and allow plenty of time for the survivor to get words out. Don’t always jump in at the first hesitation to second guess what they are trying to say. When speaking, speak slowly in short phrases, enunciate clearly and never use “baby talk.” It helps if both communication partners smile and use reassuring hand gestures.
Survivor Jake Jacobs with wife and caregiver Deanne, members of the Citywide Stroke Support Group in Oklahoma City, who contributed to this story.
Deanne Jacobs urged caregivers: “Continue to be active in as many social activities as you can and involve the survivor when appropriate, but don’t put him on the spot unless you feel the others understand. I have had to answer most questions, but I always look to Jake for confirmation that I am answering as he wants.”
Dr. Jacobs points out that it is not the survivor’s role to make others feel comfortable. The survivor is going to feel frustrated no matter what. “They’re going to be sputtering and fuming and slapping their heads or just being uncomfortable and going silent. So the survivor is not really in a position to put other people at ease.”
“The survivor has enough to do to find the words and make himself understood,” Deanne Jacobs said. But the effort to reach out is worth it because it is important to continue as normally as possible. “I get Jake to go to the store with me so that he is part of the decision making with groceries or what clothes he wears. It might seem easier to stay home and not put yourself in an uncomfortable situation, but you have to be able to make new relationships.”
“The good news is that most people with aphasia get better with time, as with most stroke deficits,” Dr. Jacobs said. Someone who may not have any language initially may get better within a couple of days or weeks. In a few months they may have basic language facility. “Or they may never have the capacity they did in the past, and everybody will have to adapt to that. There may be a certain amount of ongoing frustration and sadness with that, but there’s no getting around it.”
“Jake’s face lights up when people stop by the house or say hello at church,” Deanne Jacobs said. “It helps him to know that he is still thought of as a person. He has enjoyed outings with others to look at houses, Christmas lights or going for a treat.”
She has also learned an important lesson that caregivers neglect at their peril — to ask for time for herself. “I am no help to Jake if I’m tired,” she said. “I have also learned to accept help when it is offered.
“Aphasia is tough,” she continued, “but there are rewards in learning that I am tougher than I thought. We have learned to find the promise in each step in recovery.”
Editor’s Note: Thanks to rehabilitation psychologist Janet Spradlin for coordinating and recording our conversation with the Citywide Stroke Support Group. We also want to thank ASHA members Gloriajean Wallace, Mary Purdy and Amy Hasselkus for developing the downloadable educational information at strokeassociation.org/communication.
This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.