Ten Things NOT to Say or Do to a Stroke Patient

This post is different. It comes directly from my book, "The Tales of a Stroke Patient." One of these situations just happened--again. I think it needs a re-print in my blog.
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People are funny, and I don’t mean in a ha-ha sort of way. They could be neurotic, bipolar, obsessive-compulsive, anxious, or agoraphobic, just to name a few types. Some of the ones who came to visit me had their own type: dysfunctional-when-meeting-a-stroke-patient.

Even though they had good intentions, in all fairness to me, some of them said and did things that were downright insulting, if I took the comments and body language personally. But I didn’t, for those people who took the time and came to visit me.

In all fairness to them, how could they know the right responses from the wrong. What it really comes down to is this: How do you speak to a stroke patient who’s had her life turned around in a 180-degree spin?

I made a list of the top ten things you should never say or do to a stroke patient, and I, too, have been guilty of most of them before having my stroke when I visited stroke patients. 
So having set the record straight, here goes.

1. Saying ‘good girl’, ‘good boy’, ‘good job’

Those are phrases you should say to your pets when they are being rewarded with a “Pup-Peroni” or Doritos’ chips. If you say them to me, I am not really being a good “anything.” I’m just sayin’. IT’S SORT OF CONDESCENDING.

 

2. Talking loudly

People have a habit of speaking loudly to foreigners and the sick. Just because they are from somewhere else, speaking loudly to a foreigner will not help get your point across. There is no hearing problem involved. The same thing applies to me. HOW DOES SHOUTING HELP?

 

3. Talking slowly

Talking slowly to a foreigner might be an asset. But talking slowly to me makes me feel mentally disabled. How would YOU like it if someone said, “How — are — you — feeling — today?” If I could, (and I wasn’t able to then), I would have talked quickly in response, possibly making them change their way of speaking. I REPEAT–HOW WOULD YOU LIKE IT?

 

4. Making faces at me

Stroke patients are difficult to understand at times, but please don’t squint, or turn your mouth to one side, or wrinkle your nose at me. Just ask me to repeat my statement, and if you still can’t understand, ask the question in a different way. After all, you’re the one with a full brain! SO USE IT!

 

5. Talking over me

I mostly listen, but when I get up the courage to speak, let me do it. Don’t interrupt me in the middle. In other words, LET ME FINISH!

 

6. Completing my sentence

Some people find the right word choice instantly, but it takes me a few seconds more. So please stop trying to fill in the blanks. WAIT! I’LL GET IT!

 

7. Giving me lists of things to do

If you give me a list of five or more things to do, I’ll may miss one. My brain is going, but the parts that are dead…well, simple died and there’s no hope of getting them back. Did you ever hear that heavy drinkers lose brain cells and the cells won’t be replaced? Same thing. YOU HEAR THAT, HEAVY DRINKERS?

 

8. Ignoring me as if I’m invisible

Once in awhile, at Rehab Y, I would see doctors on the outside. If I’m waiting at a new doctor’s office, for example, staring right at some person who’s in charge, the person invariably stares at my friend to find out what my friend wants, forcing me to shout and look like an idiot–which I am not. I shouted several times in person but even more on the phone. Some of the people just don’t listen and say their “shpiel” regardless if I object. “FOR CHRIST SAKE, I HAD A F***ING STROKE. GIMME A BREAK!” 

 

9. Saying I’m not moving fast enough
Once in awhile, people will say something to the effect, “Could I get by you?” and start moving before they even hear the answer. Their rhetorical question, because that’s what it really is, a few times cost me my balance. WHY ARE VISITORS IN SUCH A HURRY IN THE NURSING HOME?

 

10. Hanging up on me

A lot of operators hang up on me. They are nameless and they take advantage of that fact. But it doesn’t help me. WHY WON’T THEY WAIT?

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Currently, all these situations are still going on with me. Yes, I tell it all from my point of view, hoping that healthcare professionals will take advantage of my thoughts, learning why stroke patients are still frustrated. I am tenacious in my mission to educate the world about stroke survivors. Why do I use "patients" and "survivors" interchangeably? Because sometimes, people make me feel like a patient, even now, 6 years later.

Psychotherapy: It's Been My Life Changer

When one thinks about therapy for stroke survivors,
physical, occupational, and speech therapies are the obvious choices. All the rehabs provide the same, old thing. But what's the missing piece? Psychotherapy, of course! None offer that as routine.

My partner suggested mental therapy almost six years ago. But I didn't do it, not because I didn't think that I needed it after the stroke that caused maximum heartache to both of us and almost ultimate death to one of us; I didn't do it because I wasn't ready. That's the way it was then, and nobody, not even my partner, could change it.

Even if you think you're perfectly all right (which actually no one is) and especially if you think you're not, everyone should experience mental therapy sessions at least once in a lifetime. Most, if not all, insurance plans cover it. You can choose a licensed social worker, a psychologist, a psychiatrist, the latter being able to write prescriptions. But all of them give support with something, maybe a chain of somethings, you just can't figure out.


I've gone to a licensed social worker who is also a psychotherapist for about a year now, twice a week (after the year, once a week), 50 minutes per session, for disappointments and depression from failed relationships among family and friends, some having to do with the stroke, some not. The therapist will read this post and know that I am talking about her. To afford her anonymity, I will call her Sue.

Sue and I talk about a variety of things, like self-esteem, self-worth, and dignity, about life choices, responsibility, and values, about betrayal, rejection, and revenge. I am not nearly done, but looking back, I have made progress. When I first came to her, I was an open, walking wound, but she taught me how to give myself more value, to be a good person. But it turns out, according to Sue and me in collaboration, I was questioning my behavior before the stroke, like choosing the wrong men--angry like my father, narcissistic like my mother, bullying like my brother, or feeling revengeful thoughts against people I once cared about.

Though her office is upstairs, she meets me downstairs to accommodate me. The downstairs space has no comfy couch, no budding plants, no inspiring pictures. Just talk. It's enough for me. With a notebook on her lap, she writes occasionally and listens intently, speaking at random intervals.

Sue is my rudder for making most of my nonsensical thoughts sensical. But she's not a magician. Some of my thoughts get short shrift, dismissed, like the rubbish they are. "Seriously?" she often inquires. And every situation prompts more thoughts. She challenges me and I embrace the challenges. We are a good team--the tough psychotherapist who doesn't let me get away with bullshit comments and the willing patient, eventually choosing what I will become. But not tomorrow. I am a patient patient. I am willing to wait.