Scott Sanders, hospice volunteer, Washington DC
"This training was a profound experience. It reinforced for me how powerful touch can be for people who may feel isolated, fearful or in pain. I returned inspired, energized and committed to sharing what I learned."
Communicating With Stroke Survivors: What Matters Most?
Vol. 10, Issue 03
It is likely that at some point, someone you know - a grandparent, parent, sibling, friend, neighbor or client - will suffer a stroke. It is one leading cause of long-term disability in the United States.I've met literally hundreds of stroke survivors while working as an occupational therapist in rehabilitation programs, and my grandfather suffered a stroke when I was a child. Even though I've had all this experience, the one thing that stands out as challenging, yet critically important, is communication. The topic of stroke, or cerebral vascular accident, is very complex, and people who suffer a stroke commonly experience physical, behavioral and communication effects.
The focus of this article is communication, so it's important to have a basic understanding of what happens during a stroke that leads to serious communication impairment. The term stroke refers to a situation that occurs when blood flow to the brain cells is interrupted. There are basically two types of stroke. An ischemic stroke is when an artery becomes blocked by a blood clot, depriving cells of oxygen. About 83 percent of strokes are ischemic. Hemorrhagic stroke is when there is actual bleeding from the arteries into the brain tissue, accounting for about 17 percent of all strokes. The resulting functional impairment or disability following a stroke depends on the location of the vascular lesion in the brain. Speech and language is a function primarily of the left hemisphere of the brain, so when the stroke occurs in the left hemisphere, communication - the ability to speak, understand, read and write - will possibly be affected. The extent is determined by the severity of the damage to the brain.
This brings me to the point I really want to make. What does the stroke survivor experiencing communication disorders need from us? I know what my own observations tell me, but I wanted to see what others say about it so I set off to find out. In the process, I found a jewel of an evidence-based report called "The Psychosocial Spiritual Experience of Elderly Recovering from Stroke." The elders recalled that the early period following the stroke was terrifying. Connection with others was important in recovery, and communication difficulties led to feelings of isolation. They stressed that the work of recovery requires a great deal of physical and psychological effort, and that hope and inner strength were important.Jill Bolte Taylor, PhD, was a 37-year-old neurologist when she suffered a massive stroke. Her book, My Stroke of Insight, shines a light on what she needed most during her recovery. On the topic of communication and connection with others, Jill has this to say: "I needed people to love me - not for the person I had been, but for who I might now become. I needed those around me to be encouraging. I needed to know I still had value. Focus on my ability, not my disability. I needed people to come close and not be afraid of me. I desperately needed their kindness. I needed to be touched - stroke my arm, hold my hand or gently wipe my face if I'm drooling. I know it can be very uncomfortable for a healthy person to try to communicate with someone who has had a stroke, but I needed my visitors to bring me their positive energy. Since conversation was obviously out of the question, I appreciated when people came in just for a few minutes, took my hands in theirs, and shared softly and slowly how they were doing, what they were thinking and how they believed in my ability to recover."
What people who survive strokes may need most from us is not found in any kind of therapeutic technique or approach. It's found in our ability to show up and be real in our caring. It's found in the simple gift of touch and heart-to-heart connection. It's found in acknowledging that the stroke survivor is a person whose life has been altered, but the individual inside the body remains the same. It's found in shared hope. I'll leave you with this poignant story called "Poor Thing" by Judith A. Russo, who cared for her husband following his stroke.
"Did you hear that Joe had a stroke?" asks Person A.
"Oh yes, poor thing!" says Person B.
"He was such a good person and a good worker," says A.
"Yes, too bad, isn't it?"
My husband had a stroke in February 2000, which left him with Broca's aphasia. Do you know what Broca's aphasia is? What you need to know is that he is not a "poor thing." And he still is, not was, a good person. He is a survivor who is living a richer life now than he was before. He was in the rat race of existence, going round and round with the dizzying effects of a non-stop merry-go-round. Now, he has time to smell the lilacs, watch the egret fish for its dinner and marvel as his granddaughter grows inch by inch. How poor can that be?
He is, perhaps, disabled, but the same person he was before the stroke. Most folks become so intimidated with the affliction "stroke" that they forget there is a real person living in that body, a person who thinks, hurts, laughs and cries just like you.
The rhetoric continues, "What do you say to him?" asks Person A.
"I don't know," replies Person B.
"Well, I won't bother him now, or call or visit. After all, he's probably busy, and I don't know how much he understands anyway."
"I agree," says B. "He probably wouldn't know who we are, and we don't want to embarrass him."
By the way, Broca's aphasia is the inability to communicate effectively by speech. What is the therapy for people with aphasia? Talking to the survivor and encouraging them to respond. You might have to wait for two or three awkward moments for them to think about what to say. In the meantime, you may see the egret fish for its catch of the day. You may see the lush brown velvet cat-o'-nine tails waving in the wind, or the rabbits playfully goading each other on the lawn, or the huge turtle crawling along the banks of the pond with a goldfish in its jaws. Come at dusk and perchance you will see the deer as they come to the pond to drink. You will go away richer for the visit because you will have escaped the runaway merry-go-around, if only for a few moments. You will feel rich and will have blessed the heart of the "poor one who was such a good person."
When a stroke happens to a relative, friend or co-worker, please do not put them into an isolation they never asked for. Reach out and touch someone today.
- American Stroke Association.
- Joanna Briggs Institute. The Psychosocial Spiritual Experience of Elderly Recovering from Stroke. Best Practice 2009;13(6).
- Bolte Taylor J. My Stroke of Insight. New York: Viking Publishing, 2006.
- Russo JA. Poor Thing. Excerpted from the Readers Room department of Stroke Connection Magazine, January/February 2002.
- National Aphasia Association.