Caring for a Survivor with Aphasia
Mary and Reed Harris of Cumming, Georgia, will never forget May 30, 2007.
George Aubrey Photography
She was on a business trip in Orlando, when her phone rang at about 3 p.m. “The words of the neurologist ‘Your husband has had a massive stroke, and we need your permission to administer tPA’ still resonate with me,” she said. “He kept trying to explain tPA to me, and I kept interrupting him to say ‘give it, give it now’ because I knew there was an ideal window for its administration.” Reed was 50 years old.
Flying home that night, Mary felt overwhelmed. “I did not know if Reed would live or die,” she said. Her mind was flooded with scenarios they might face and how they might handle them. “Naturally, my greatest concern was for Reed, the love of my life, my high school sweetheart, who was too young to have a stroke. By the time I landed, he was moving his right side and I was elated. When I arrived at the hospital, the full impact of his brain injury hit me. It was not clear that he knew me when I saw him. I held his hand, tried not to let the full brunt of my emotions come through as I assured him we would get through this together and that I loved him. I am certain he did not understand a word I said.”
Despite receiving tPA, Reed was left with deficits: An almost complete inability to communicate verbally or understand what others are saying; partial paralysis on his right side; profound apraxia, which is difficulty coordinating the motor functions required to speak; and anomia, the inability to recall or say the correct words for things he wants to talk about. Reed also had some auditory processing issues, causing difficulty with how his brain processes what he hears.
Aphasia spans a wide spectrum of possible impairments, from expressive aphasia (problems communicating) to receptive aphasia (difficulty understanding what is being communicated) to global aphasia (inability to process language at all, including reading and writing). It can result from the brain injury caused by a stroke. The severity varies depending on the degree of injury to the language centers, which are primarily in the left hemisphere of the brain.
Beth Crawford, MS, CCC-SLP
Because aphasia impairs language, it can be one of the most challenging effects of stroke, especially for couples like the Harrises. “I think that the real challenge is that personal relationships rely on communication for intimacy,” said Beth Crawford, MS, CCC-SLP and program director of the Aphasia Center of West Texas in Midland. “Couples are forced to find other ways to create that intimacy that don’t rely so heavily on language.”
Aphasia is not a problem with a one-size-fits-all solution. “It does typically improve over time,” Crawford said, “but that’s not to say that survivors with aphasia don’t continue to struggle with communication. Language is a complicated business requiring neurological capacity that may not ever be recovered.”
That has been the Harrises experience. Right after the stroke, Reed could follow one- to three-step directions, answer simple yes/no questions, read single common nouns and make his needs known through limited words such as “yes,” ”no,” “OK.” He could also use gestures such as pointing, as well as facial expressions and head movement.
Reed and Mary with their granddaughter, Scout Neder
Today, nine years after his stroke, long after his speech therapy sessions ended, Reed’s ability to communicate continues to improve. “He now reads at a sixth-grade level and is able to communicate his needs and ideas verbally,” Mary said. “He prefers nouns and finds verbs difficult. He no longer uses his communication book, which was his crutch for many years. I noticed with great pride that Reed no longer did his well-rehearsed introduction, which was ‘Hi. Reed. Aphasia. Speaking slowly. Stroke X years ago.’ He no longer needs to introduce himself along with his communication disorder! He is comfortable asking people to slow down or repeat something. He still struggles with auditory processing, especially when it comes to his wife’s honey-do list.”
Reed’s improvement has not been without its ups and downs. For instance, their initial experience with speech therapy was not positive. “The team was certainly competent, but we did not feel that they were invested in our care,” Mary said. “We had been told that most recovery comes within the first six months post-stroke so we both felt an urgency to get the most we could out of therapy. I had a sinking sense that time was running out, so I called several centers that offered speech services in our area.”
She found a provider near their home and visited before making an appointment for Reed. She felt an immediate connection to a therapist named Barbara. “When Reed met her, he lit up and began to look forward to his speech sessions,” Mary said. “Barbara gave Reed hope, confidence and joy! A lesson learned is that it is important to feel a connection with your therapist, and it is worth exploring options if the spark is not there.”
Crawford agrees but points out that depending on where they live, stroke families may have limited choices available. “There are lots of ways to augment the therapy process if the therapist is not ideal,” she said. “Be creative with your therapy process. You can use distance or online programs, and don’t be afraid to provide feedback to your therapist. Make your needs known. Most therapists are very open to suggestions because they realize that no one person can be everything that another person needs.”
The Harrises tried whatever their therapists suggested but found that tools need to be appropriate for the level of recovery. They purchased Rosetta Stone (a language program), various workbooks and flash cards for reading, spelling and math. “We carried around a Zip Lock bag with a plastic cup, knife and comb in it and worked on saying the object’s name correctly and identifying it. And then we graduated to a new set of objects. This went on for quite some time,” Mary said. “I remember when Reed tried to comb his hair with a toothbrush. At least it was a brush of some type, right?” Puzzles and flash cards were not effective for Reed. Rosetta Stone was an excellent tool, but he was not able to use it effectively in the early days of recovery.
Crawford, along with many other SLPs, is a proponent of the Life Participation Approach to Aphasia (LPAA), which focuses on re-engagement in life. “Encourage and accept any type of communication,” she said. “Don’t insist on spoken language.”
Reed tends to one of Mary's "honey-do" chores
“The best therapy is life,” Mary said. “Friends, neighbors, family and socialization are absolutely critical to recovery. One of my greatest fears was that Reed would become introverted and intimidated about socializing, so I did not give him the option to be a shut-in.” They were renovating their house at the time, and the workers played an important role in Reed’s recovery by providing daily dialogue and stimulation as well as camaraderie. “Reed took part in daily decisions and observed the quality of the work and had to learn to point out issues, mistakes, etc.,” Mary said. “They provided socialization!”
It’s helpful to make adjustments along the way. Restaurants with background noise overstimulated Reed so they opted for quieter restaurants. “At first, I ordered for Reed. We progressed to me reading the menu to him and I would place the order for him. As his recovery continued, he made his selection on his own and I would place the order. He now makes his own selection and orders on his own. We are grateful for even these small steps that we once took for granted.”
Crawford agrees that socialization plays an important part in recovery. Socialization can also prevent some issues that can occur after stroke such as depression. At her center in Midland they have group sessions where survivors with aphasia have conversations and engage in a variety of life activities. “If possible, find a group program for people with aphasia so that your survivor can experience other like-challenged people and gain support and practice their skills in a safe environment,” Crawford said. The National Aphasia Association has a list of aphasia support groups on its website.
Reed joined a stroke support group, though he and the leader were the only participants for several months. Eventually the group grew to more than 50 stroke partners. “While I participate and enjoy the support group, it is an activity that Reed owns,” Mary said. “At first I felt guilty when I could not attend but quickly realized that Reed participated at a more engaged level when I was not present. Could it be that absence makes speech grow stronger?”
They planned events and became more social than they had been before. They started with small groups, but have graduated to neighborhood parties of 20 or more and also entertain the support group of 40 or more. “Reed’s job before his stroke entailed planning and logistics,” Mary said, “so he is the planner and grill chief. Reading a recipe and following the steps proved to be another form of therapy. He now makes a luscious carrot cake, a savory onion tart and my favorite, Italian sausage and peppers, to name a few.”
Volunteer work is another example of life as therapy. Reed participates in a peer visitor program for newly diagnosed stroke survivors at Glancy Rehabilitation Center. He partners with another stroke survivor whose communication skills are not impaired and over the years they have visited about 2,000 survivors and caregivers, demonstrating that meaningful recovery is possible.
“Did I mention ‘grocery therapy’?” Mary asked. “Reed enjoys food, prefers items that are fresh, so he goes to the grocery almost every day. He reads the weekly circular to find the best deals, but the experience is less about the deals than it is the socialization.” Regularly visiting the same stores can promote a sense of community with the staff members. “One of the pharmacists was being transferred, and her departing instructions to her colleagues were to continue to help Mr. Harris with his verbs,” Mary mentioned. “Apparently, Reed had lamented his struggles with verbs as he picked up his prescriptions. I had no idea that the pharmacists were also involved and engaged in Reed’s therapy!”
To Speak or Struggle
Caregivers of survivors with expressive aphasia often face this situation: their survivor is struggling with a word, should they step in and say the word for them?
Mary and Reed talked about their rules of communication early in the recovery process. He may start a story and ask Mary to join in. If she notices him struggling, she asks if he wants help. “He will let me know if I go too far,” she said. “When conversations take a path that he does not prefer, he simply requests, ‘Change the subject’ in his beautiful, simple, polite and clear language. Most often, he likes to change the subject when he is the subject. He does not like to be the center of attention or the recipient of compliments. However, he has learned to appreciate observations about his recovery with appreciation, gratitude and uses it as a source of motivation.”
When stroke and aphasia happen inside a marriage, it is easy for the caregiving spouse to lose herself or himself in that role, but Crawford cautions against that. “The temptation is to become the teacher or therapist or nurse or counselor, or all of the above, so make sure that you keep in mind your primary role as spouse,” she said. “Above all, to caregivers I say ‘recognize that this event didn’t just happen to the survivor, you have sustained a loss as well. You have particular needs, so take care of those needs just as diligently as you care for your loved one.’”
Mary tells a story that shows the connectedness of couples in the stroke journey:
“I went to the website clinicaltrials.gov to search for research studies that might apply to Reed’s aphasia. I happened upon a study at University of Georgia in Athens. A doctoral candidate was doing intensive speech therapy research as her thesis. I distinctly remember driving to Athens and being stuck in traffic. Reed was frustrated and told me he wanted to go home. I calmly explained that we had made a commitment to participate in the study, and we were going to honor the commitment we had made. We met the doctoral candidate, signed the consent and launched into an absolute epiphany.
“Reed received three weeks of intensive speech therapy. His ‘Speech Therapy Babes’ were pivotal in his recovery. He started the program with about 18 words and had 214 at the end of the three weeks. We were elated and did not want his therapy to end.
“It was during this program that Reed was first able to say my name again. When he said it, I cried with utter joy. Even though Reed’s old voice was of radio quality, the sound of ‘Mary’ pronounced with his new, high-pitched, sweet southern accent was a huge breakthrough. He was so excited that he even said it where it did not belong. He would say ‘Mary Mushroom Pizza’ instead of Mellow Mushroom Pizza, our favorite. This experience gave us hope for his capabilities to respond further, and we are forever grateful that we were chosen and that we did not let Atlanta traffic deter our journey.According to Wikipedia, in aviation, flight length is defined as the time airborne during a flight. There are four categories: short haul, medium haul, long haul and ultra-long haul. “Our journey in stroke has been a haul that has thankfully been long in that Reed is in his 10th year of progress. As I reflect on what has fueled us through that long haul, it is three things: humor, independence and motivation, which create the acronym ‘HIM,’ which is also a pronoun. Due to his aphasia, Reed rarely uses pronouns, but it is him, Reed, who has fueled our long haul. His humor, independence and motivation have guided us personally and inspired those around him. I am grateful for ‘HIM’ and him as we continue this expedition in life!”
Lastly, Mary shares, “May 30, 2007, changed the entire course and purpose of our lives. The stroke happened to both of us and impacted every aspect of our lives including:
- Sense of self
- Friends/ family
- Everyday routines
- Goals/ dreams
“But we go on. We have learned to adapt. While our lives are forever changed, we feel that the experience of stroke and recovery has enriched us as individuals and as a couple. The stroke was our mulligan, our second chance. Our lives are enriched and fulfilled, and we have a greater sense of purpose. We have found that helping others dealing with stroke has been great joy for us.”
See specific Tips for Communicating for receptive, expressive and global aphasia from Beth Crawford, MS, CCC-SLP.
Learn about speech and communication challenges after stroke in this video featuring Mary and Reed Harris. (Courtesy of the HeartCare Channel)
Carol Dow-Richards of the Aphasia Recovery Connection (ARC) and Audrey Holland, Ph.D., CCC/SLP, BC-ANCDS, Regents’ Professor Emerita of Speech, Language, and Hearing Sciences at the University of Arizona, share important tips and ideas for caregivers of loved ones with aphasia. (Courtesy of ARC)
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.