Seniorlink Blog

HOW PERSONAL EXPERIENCE CAN HELP OTHERS CARE FOR PEOPLE RECOVERING FROM STROKES

Donna Varelas is a Registered Nurse for Caregiver Homes.

Twenty years ago, my husband had a massive stroke. He had just turned 41. Ted went from being fully functional and independent, to losing his speech and needing around-the-clock care. The doctor told me that he would not improve, and to simply leave him in a nursing home. With two small children, I was at a loss for what to do. But when he starting making unexpected gestures, such as putting his hands over his eyes and touching his paralyzed side, I knew he had the potential to get better—I could see it in his eyes.

Today, as a nurse at Caregiver Homes, there is a consumer with a similar situation as my husband, Ted. Nicole is in her mid-40s and had a stroke six years ago. Because of this, her son moved back home to be her full-time, live-in caregiver. Being able to use my personal experience in addition to my nursing training has been a huge asset in helping Nicole’s family understand her condition, particularly relating to her speech and affect.

When Ted first had a stroke, he was not aware of his speech symptoms, called aphasia, for a long time. He would start to speak and only gibberish would come out. It wasn’t until I played a voice message of him that he realized. It was a rude awakening to only hear “ba-ba-ba-ba” coming out of his mouth, when to him, he was speaking clear as day. Nicole has similar language struggles, and because of my previous experience, I’m able to help her family understand her better and provide specific techniques I used with Ted to help improve her speech. One technique I have adapted for Nicole is using flashcards. For the word “chair”, I would place a card with the word and picture on a chair in the house, and similarly place flashcards on objects all over the house to re-engrain it back into memory. Another language exercise I have used previously and taught Nicole’s son to use is breaking down a word. When writing something down, always encourage a person to start with the first sound, or the first couple of letters of what they are writing. For Nicole, it always helps to start slowly, be patient, and to break the word down into steps.

Mood swings are another common side effect for people who have had strokes. Both Ted and Nicole have had experiences where one minute they will be laughing uncontrollably or inappropriately, and the next, it will turn to sadness. Initially, after the stroke, they are not able to do everything they were once able to, and frustration and sadness comes alongside that. Nicole’s son and caregiver wanted to put her on antidepressants when she first had her stroke, but with some time and therapy, she is improving. I often explain that people who have experienced strokes can have wavering emotions because of frustrating changes in cognition. When Nicole heard this, she immediately identified with it. “Yes! Yes! That’s me! she said, pointing to herself. Since her communication and insight is not what it used to be, caregivers of people with strokes can benefit from someone with personal experience who has a solid understanding of why they feel or act a certain way.

Looking at Ted now, versus 20 years ago, you would not see the same person. His speech has improved greatly; he carries a cell phone; he lives independently; he goes shopping on his own; and his mood is more stable. He’ll never work, and he’ll never drive, but he has made a more progress than anyone imagined. Even still, he is always trying to get better. He’ll still often say, “Had a stroke. Still working on it,” but he has never been the type of person to sit in a corner and feel sorry for himself—and neither is Nicole. Since Nicole has started her speech and physical therapy in the home, her outlook and motivation has improved and she and her son are proud of the progress she has made. Like Ted, I see the potential in her eyes.

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