A Stroke and a Thorn

By Kim Johnston

Are you ready? Are you ready for your world to transform in an instant? I wasn't. I was a selfish, middle-class suburbanite running a good pace along with the best of the rats before my husband suffered a massive stroke. I spent the next four years ranting, wailing and scratching to hold on to my old life. I was a superhero who was going to help him achieve a miraculous recovery that equaled his miraculous survival.
On the night of the stroke I made a vow to God that I could not honor, then later lived in fear of losing my mind. I wrote this story to save my life and found peace, comfort and Grace as I struggled through it all.

• Language: English
• Publisher: Kim Johnston
• Release date: Dec 24, 2015
• ISBN: 9781311751225

Book preview

The thing that has been-it is what will be again, and that which has been done is that which will be done again; and there is nothing new under the sun (Ecclesiastes 1:9 Amplified Bible).

John is a husband, father and Papa who can no longer walk independently, speak or manage his activities of daily living. He has lost the ability to reason through simple tasks and doesn’t understand the difference between push and pull. He doesn’t really understand anything, but he thinks he knows everything. This is the result of an acute cerebrovascular accident he suffered four years ago at the age of sixty-seven. His type of stroke was ischemic. That means the blood supply to his brain was cut off due to a blockage. The initial diagnosis in the ER was a large, left, internal carotid occlusion.

A normal heart beats in a regular rhythm over three billion times in a life. It pumps a continuous supply of oxygenated blood throughout the arteries in the body. The top two chambers of the heart are called the atria. The right atrium receives de-oxygenated blood returned from the body then it’s pumped from the ventricle back to the lungs to be re-oxygenated. The left atrium fills the left ventricle with oxygen rich blood received from the pulmonary vein. The ventricle contracts and blood is pumped into the aorta, the largest artery in the body.

Atrial fibrillation is an arrhythmia of the heart where the upper chambers quiver or flutter. The abnormal rhythm keeps the blood from flowing properly into the ventricle. As blood pools in the atrium, clots may form and break off, then travel into the brain causing a stroke. A-fib is a common complication after heart surgery. It seems the electrical impulses in the heart have been disrupted, resulting in erratic signals. A-fib strokes are twice as likely to be fatal and the loss of brain function twice as debilitating.

The carotid arteries and the basilar artery, which extends from the vertebral artery in the neck, branch from the aorta and supply nutrients and oxygen to the four lobes of the brain. The carotid arteries branch from the brachiocephalic artery and extend up each side of the neck. These arteries are under the jaw where you can feel the pulse. Both the right and left carotid arteries branch into internal and external arteries. The internal arteries supply blood to the brain and eyes, and the external arteries supply the throat, face, mouth, ears and scalp.

The cells in the brain called neurons are very sensitive to oxygen deprivation and cannot survive without it. That is why the brain has a back-up system named the Circle of Willis. The brain will work hard to re-route oxygenated blood to a region that is occluded. However, because the neurons are so sensitive they can die within a short period of time and cause devastating consequences, or even death. The physician’s report dated April 1, 2011, the day after John’s stroke, stated that his current physical and verbal impairments were already present.

I remember the details from the night of his stroke very well since I witnessed the event. I am John’s wife and full-time caregiver. My name is Goddamn, or Damn for short, or Two, or Morning, or Do. That’s what John calls me now. Those are the only words he can use spontaneously since he has acquired aphasia. He can mimic most of the words I use when we’re practicing face to face.

I said, Ten.

John responded, Thistle.

I repeated, Ten.

John said, Thistle. One. Two. Morning.

I said, How are you today?

John replied, Morning.

I sat next to John’s bed in the ER that night and prayed for God to let me take him home. I told Him that I wasn’t ready to be alone and would take care of John no matter what his condition would be.

The young ER doctor told me earlier that her sister had suffered a stroke and was never the same afterward. That’s a huge understatement for John. The only thing I recognize about him now is the way he looks. He is a completely different man than he was before the stroke. I am a completely different woman than I was before the stroke. I lived my life in a blur, not seeing any of it in real time. Looking back on those years prior to the stroke is like watching bits and pieces of a TV drama with bad actors. Now by the Grace of God, I am present in and living my life. I wish I could say that I have everything figured out. Sometimes I think I do, then something or someone pulls the rug out. I go around and around in my mind about what to do next. I wonder what to do for the long term. I wonder what to do for the short term. I have yet to reach the point of letting go completely and letting God steer for me. Some days I’m pretty good at seeing our beautiful house with the cottage garden, and feel pride in what I’ve done and a sense of contentment. Other days, I feel my grip on reality slipping and wail at the burden I have on my shoulders.

Through it all I have been blessed with wisdom and understanding.

But to man He said, ‘Behold, the reverential and worshipful fear of the Lord – that is Wisdom; and to depart from evil is understanding’ (Job 28:28).

April 1, 2011, Radiology, HEH, MD

20:51

CT Head (Brain) with Optiray 320

Eval for CVA

Findings:

Evolving left middle cerebral artery distribution infarction (affects the right side of the body).

Symptoms include:

Neglect (this means he forgets that he has a right side to his body).

Weakness (is a nice word for paralysis, although he isn’t really paralyzed. It’s just that his brain can’t tell his limbs to move).

Lack of movement, cognitive deficits, speech deficit (aphasia).

Attention (deficit), (loss of) memory, (unable to use) judgment, perception, (lack of) ability to form new memories.

Problems with reading and writing.

Confusion with left and right (push and pull).

Lack of motivation.

Lack of motor planning (makes it difficult to walk because he can’t plan ahead to pick up his foot).

Loss of field of vision (he has good vision, but forgets to turn his head to the right).

Stroke

I almost had a stroke. You’re going to have a stroke. A golf stroke. A stroke of luck. A stroke of genius. At the stroke of midnight. A blow. A brush stroke. A single movement of the hands. A sudden attack of illness. Different strokes for different folks.

The bed rail brackets I bought from an online medical supply store are flimsy and squeak when the bed rails are shaken. The rails work well enough as stability for John to lower himself onto his bed, pull himself up, and to wake me up in the morning. A touch of oil might help quiet the squeak, but it’s preferable to being cursed at.

I get out of my single bed; go into the bathroom to pee, then quickly dress in sweats. I start off our routine by changing his night urine drainage bag to the daytime leg bag. The bag is connected to his supra pubic catheter with an extension tube. I like to reuse the bag so I empty the urine into the toilet, rinse it out with warm water then hang it in the shower to dry like an old douche bag. Hospital protocol requires you to soak the tubing in a vinegar bath, but I’m not that dedicated.

The incision where the catheter is inserted into his bladder gets cleaned and bandaged. Next, I use the remote to raise the head of his bed so he is in a sitting position and able to put his feet on the floor. I bring in the small transport wheelchair from the hallway, and he pulls himself up with his left hand, stands next to the bed, then plops into the chair. I pull him backwards into the bathroom where he can fit at an angle next to the sink.

I hand him his toothbrush and set a small cup of water for him to rinse next to a clean towel. After he brushes and rinses, he puts in his partials, swishes mouthwash, then spits it back into the little paper cup. I wet a washcloth with warm water and spread it out on his good hand so he can wash his face. Next, I put contact lenses in his eyes and help him out of his nightshirt. To dress him I start with his weak arm, pulling the sleeve over it and up onto his shoulder. He instinctively goes to his good side and forgets about the weak side. That’s the hard part and that’s my job. He puts his left arm in the shirt then I pull it up over his head. After his clean shirt is on I wet his hair down to part and comb it. I hand him the electric razor and squeeze past him to the bedroom to make up the beds while he shaves. When he has finished shaving, I push him in the transport chair to the dresser in the bedroom where I help him stand to change his brief.

I glove up, open the container of baby wipes, and then uncap the bottle of perineal cleaner. It’s funny what goes through your mind while you’re cleaning up poop. I find myself thinking about what to have for dinner. That is (I rationalize) because I’m wondering what he ate the day before. I have to be cautious about everything he eats. If I give him the wrong thing, I pay for it in wipes. It also makes sense that poop smells so bad. It’s nature’s way of triggering a defense mechanism to guard against infection and disease. Of course there is a chemical explanation for what causes the smell. The bacterial action that is digesting the food we eat causes gases that produce the odor. Air freshener sprays are very effective at wiping out the smell, but I feel like I’m annihilating my lungs when I use them. I’ve always had a fear of burning candles, but in spite of that, there is one sitting ready on every spare surface in our bedroom. A large, wax melting, night light with lavender fragrance sits on the side table by my bed, and another smaller one is plugged into the outlet next to his bed.

After the clean brief is secured, I push him in the transport chair to the living room next to his power chair, work his pants up over his feet to his knees, then help him stand. I pull the pants up over his hips and straighten his shirttail over the top of them. He’s able to sit down on his own, so I push the transport chair back to the hallway, then wheel his regular wheelchair out of the dining room. After I put socks on his feet and turn on the heater (or the fan in warm weather) that sits on the floor next to his chair, I’m free to finish getting myself ready.

That is our routine every other day. On the other days, he has a shower right after he gets out of bed. I’ve tried giving him a shower at night, but after just a normal day it’s too exhausting for either of us. Our routine sounds like a boring, drudge filled existence, but we fought tooth and nail to get it down. Of course all of this is done in reverse at night. In effect I’m taking care of an infant, but this one weighs nearly two hundred pounds and is in no way adorable. This one does not want to stand, or climb, or run, or grow, or change.

What is going on inside the mind of a person who expects someone to do all of this for them? I give of myself 24/7 as John’s caregiver and I am always tired and angry. I didn’t know this is what I signed up for. He was a fully competent man when I walked through the door after work that March evening. Three hours later I was making a vow to God that I couldn’t honor. Everything I thought I could do, I couldn’t do. Everything I thought I knew, I didn’t know. Everything I thought I was, I wasn’t.

John was admitted to the hospital with hypertension (high blood pressure) and stroke symptoms on that Thursday night in 2011. The systolic rate at which the blood flowed through his arteries was at 180.

What is the relationship between high blood pressure and the risk of stroke we’re always hearing about on the drug commercials? The answer is: The elevated pressure can wear your arteries out. This happens slowly over time as the increased blood flow weakens the lining of the artery and causes it to harden and narrow. Fat from our diet can enter the bloodstream and attach to the weakened artery which may result in blockages or aneurysms. John was taking a beta blocker to treat high blood pressure and atrial fibrillation. The drug did not return the heart rhythm to normal, but did keep it from beating too fast. He also took a coated baby aspirin. I read a study that suggests the coating may interfere with the way it dissolves and make the therapy ineffective, so I’m not convinced at this point the aspirin helped in any way. I now see several of the pills he takes come through undissolved. I don’t know which ones they are, and frankly don’t care to look that closely.

Those were the only things he took to guard against the risk of stroke. I vaguely remember a conversation we had about his doctor suggesting a blood thinner, but he never took one. It had something to do with him having to stop drinking. The attending physician in the ICU questioned me about it. He said incredulously in his heavy mid-eastern accent, It’s like someone playing football without a helmet. It doesn’t make sense! Did he think it was my fault?

If you listen carefully to your body, it will tell you where you are at risk for problems. If you ignore those hints, the risks won’t go away. They will remain quiet just like you told them to. John had a warning that he was going to have a stroke, but apparently it didn’t register with him. I saw the warning, but interpreted it wrongly. I reacted in anger to his TIA. I reacted in anger many times in our marriage because I was jealous of his freedom. John had been retired two years at the time and I had noticed an overall decline in his energy level. I attributed the decline to his retired state of mind and to his age. It took him twice as long to do anything it seemed. In January when we had two feet of snow I watched him shovel the driveway from the window upstairs. Since the roads were impassible, I was logged in remotely to the server at work. I took a break to check on his progress and was relieved to see that he was taking his time. I didn’t want him to be one of those people you hear about having a heart attack from doing something they’re not used to. The neighbors across the street had paid someone to scrape their driveway with a plow attached to a pickup truck. I was proud of John for wanting to do the work himself and for not overdoing it. It took him most of the afternoon to finish the task. Looking back now I can see that it was an example of everything he did. He shuffled around like an old man.

I came home from work that Thursday evening, the night of his stroke, agitated as usual. I tended to keep things in all day and let them out when I got home. My son and daughter-in-law were at the house excited to share the news that they had been approved for the loan to start building a home. They were newlyweds, fresh out of college, and ready to settle down. After they left to have a celebratory dinner together, I went into the kitchen, still dressed in my work clothes, to feed our dog Bandit. John came to his place at the dining room table, as usual, to sit in front of the laptop and play Spider Solitaire. I was griping about something at work. My attitude was horrible during that time. I resented John taking over my household duties of cleaning and shopping after he retired. I wanted to be home doing those things and not dealing with all the stress at my job. I had spoken several times about looking for part time work so we could do more things together, but he ignored the conversations. He was happy with the scenario and sat through my tirades.

I put Bandit’s plate of food on the floor, then looked up to see John grabbing the quilted placemat with his right hand as if he were trying to wad it into a ball. He was drooling and spitting and making a gurgling noise in his throat. His head was twitching and his eyes were staring straight ahead. I ran to him and tried to rouse him out of the stupor by shaking his shoulders. I knew that something was horribly wrong since I couldn’t get him to respond. I turned and picked up the phone to call 911. It was the moment I had feared for many years. I had CPR training so I wouldn’t have to sit by and do nothing if John had a heart attack, but he was still conscious and breathing. I told the operator to send an ambulance immediately to our address then obediently answered her questions about what his symptoms were, when they started, and where he was at the time. The helplessness I felt as the minutes passed made our connection on the phone seem like a vortex that was sucking all the air out of my life and John’s who was only a foot behind me. I begged her over and over to make them hurry and soon could hear the siren in the distance. She had me stay on the line with her until they arrived, but all I wanted to do was slam the phone down and run out into the street to wave them in.

The first responders marched in very calmly with their equipment and went to work quickly to put John on the gurney. One of the bags left a permanent scratch on the dining room table when the EMT slid it across as he moved to get behind John. It’s not so much the scratch that bothers me as the memory of that night every time I see it. They asked me what time I noticed him acting strangely.

It just happened ten minutes ago! I said, but was thinking hysterically; don’t you know when you got the call? That was the second of many times the question was asked. It got to the point where I wondered if people thought I was lying.

They had John on the gurney and one of them smiled at me reassuringly as they began to move him toward the front door. I asked where they were taking him.

He replied, Tulsa. We have a new hospital in our suburb but it was not equipped to handle this type of emergency.

That was all they did other than take his blood pressure and try to get him to respond by calling his name. There was no ripping off his shirt, or chest pumping, or use of defibrillator paddles. I grabbed my shoes and purse and jumped into the ambulance with John and the EMTs. They asked me which hospital I wanted to go to, so I told them the first one that came to mind. I couldn’t remember which network his doctor was in, and agonized all the way about my choice. The EMT handed me John’s wallet and I searched through it for his insurance card. I called the number on the back and got a recorded message.

Finally, the driver had to know which exit to take. I confirmed which hospital and to this day wonder if I made the right decision. The other one in the insurance network touted itself as Tulsa’s stroke center. I didn’t know anything about that at the time we were in the ambulance. I felt like such an idiot. I didn’t know which hospital to go to because I wasn’t prepared. I never bothered to figure out where to go in case of emergency. The hospital name was, of course, printed on the front of the insurance card. We went to the wrong one.

March 31, 2011, Nursing

19:02

CVA Symptoms

Patient is confused, disoriented, fails to follow commands.

Restraints ordered for protection of tubes/drains restless altered level of consciousness.

March 31, 2011, Radiology, NPT, MD

19:26

CT Head (entire brain)

Evaluation for CVA

Findings:

No mass effect or midline shift.

No acute hemorrhage or evidence of localized edema.

No abnormal extra-axial fluid collections are present.

Impression:

No significant radiographic abnormality seen.

March 31, 2011, Radiology, SES, MD

19:59

CT Angio Head, Upper neck and head

Rt