by Kim Keller
On the morning of September 14, 2009, Karen and I got a phone call from Marcella, one of our mom’s closest friends. She was distraught, urgently trying to explain that she just arrived at our mother’s house and there was something terribly wrong with Mom.
Marcella handed the phone over to our mother who couldn’t quite express what was wrong. She was struggling to find the right words. That little exchange was enough for us to know what was happening. We told Marcella to please get Mom to the hospital right away — she was having a stroke!
Karen and I were shocked, of course. Our mom seemed perfectly healthy, and we just didn’t see this coming. All we could do was cry together when Mom’s doctor finally confirmed our fears.
As the days unfolded, we realized that Mom would have a difficult road ahead of her. Her stroke left her with aphasia, meaning she would have to rebuild all her communication skills. Though her speech sounded normal, and she understood the world around her, she had trouble finding the appropriate words when she spoke. She would have to learn how to read and write all over again, and how to tell time and calculate simple math.
Since that morning in 2009, Mom has worked diligently on her recovery. She has most of her skills back now, though she does all of these things — read, write and calculate math — a little slower than before. And as far as “finding her words,” this can still be a challenge, especially if she’s feeling rushed or self-conscious.
Mom’s worked very hard to regain her skills, and here are some of the tips that helped her along the way:
1. Recovery Plan — Mom was thoroughly resistant to enter a rehab after her initial hospital stay for the stroke. She was understandably eager to get home. But Karen and I had learned, the hard way after caring for our dad, that rehab was important if you wanted the best possible outcome. And rehab did indeed turn out to be indispensable. That’s where Mom’s recovery road map was set up, and where she (and we) were handed the tools and resources to move forward.
2. Regular Schedule — A familiar routine has been key to Mom’s recovery. Getting up at the same time everyday, having meals at the same time, going to bed at the same time — this kind of everyday schedule helped Mom learn how to tell time once again. There was also a certain amount of comfort in the regularity of the daily routine. It conserved energy and kept her from wasting unnecessary brainpower, which is a crucial asset in recovering from a brain injury.
3. Rest Often — Rest is crucial to help repair the brain. We tried to make sure that Mom was taking breaks throughout the day and that she got plenty of sleep at night. Trying to rebuild skills like reading and writing takes a lot of focus and concentration, which is exhausting. Rest is an integral part of the healing process.
4. One-On-One Conversations — My mother has lots of wonderful friends, so during her hospital stay, right after the stroke, she had a lot of visitors. One day I counted more than 17 people crowded into her hospital room! I remember thinking: Wow, isn’t this great? But actually it wasn’t. It was exhausting for her, and it ran counter to the lesson we later learned at rehab that her conversations should be limited to one at a time. It was frustrating for Mom to try to focus on all these different people at the same time, and it put her brain on overload. When she got home from her rehab stay, we had to make a concerted effort to restrict the number of visitors at any one time. Mom has gradually moved back to socializing in a group setting, but it’s still not ideal for her, it can still be a challenge and become frustrating.
5. Reading One Word At A Time — Even from the beginning, Mom could look at a written word and understand what it meant. We realized this when we pointed to a rose and asked, “What’s this?” She struggled to find the word, to verbalize that one simple syllable, and ultimately could not. But if we wrote out three words — rose, cup, comb — she would point to the correct word. She also couldn’t read a sentence at first. In fact, it overwhelmed her. So we broke it down into smaller pieces — we’d cover up the other words on a page and show her just one at a time. When she got comfortable with that, we’d cover up everything but a phrase, then a whole sentence, and so on. It was clear that too much at once overwhelmed her, but she could handle, even excel at, bit-sized pieces. That was an important tip for all of us!
6. Exercise — Mom has a regular exercise program that she follows now. This was one of the surprise benefits of rehab. She found out that she actually likes to exercise. You have to know our mom to understand how funny that sounds. But it makes her feel good. And I think she stuck with it, when she first started, because it was something she could control, and that was important because she was feeling as though she had lost control of so much. The added benefit, of course: exercise increases blood flow to the brain, helping to sharpen one’s ability to focus and concentrate, and this has worked for Mom, too.
7. Create Guides — We made lots of lists of items that were part of Mom’s everyday life, like favorite foods, restaurants, stores, activities, household items, etc. These lists served two purposes: One, it helped her get through a conversation when she was having difficulty finding words, and two, it helped her practice reading and verbalizing common, everyday terms.
8. Flash Cards — Karen made loads of flash cards to help Mom practice. The first ones dealt with colors. Mom knew that yellow, for example, was a color, but she couldn’t actually match the correct color with the word. Karen also made flash cards of household items, like a glass, a lamp, a plate, and so on. Mom spent hours working with these cards.
9. “I Have Aphasia” — Mom had a note she carried around with her that said she had aphasia. It helped alleviate some of the anxiety of meeting new people, worrying about trying to explain why communication was so difficult for her. It’s a simple idea, I know, but it saved our mom a ton of stress.
10. Have Fun — As funny as that sounds, Mom needed to be told over and over again to have some fun! Our mother was a very serious student and she wanted to study all the time. Her speech therapist, Mary Pat, would tell her to stop over-working herself. “You need to enjoy yourself, too, Sandra. Every time you talk with someone, it’s therapy.” In other words, don’t just study and do homework — go talk to people. Try to enjoy it!
It’s been a long road. Karen and I are forever impressed with our mother’s resolve. Her determination has truly been inspiring. These seemingly small tips add up to a huge advantage. They were integral in helping Mom find her way back, and they can help other stroke victims in the same way.
Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.