Jillian K.

Survivor and Caregiver

My experiences as a caregiver help me as a survivor

Sometimes, "Lightning" Strikes Twice

My stroke happened on March 3, 2013. I woke up with plenty of energy. In fact, I felt particularly energetic. Then, I began to feel "funny". At first, I thought I was just having another migraine with aura. I typically would feel the headache behind and around the inside of my left orbital bone and left eyebrow. Sometimes, I don't get the headache at all. The aura that starts the migraine is sometimes visual, although in the past few years it is speech related (a sensation of grasping for the words to express a thought).

I hadn't had any migraines since being put on Depakote, an anti-seizure medicine to prevent migraines by "quieting my brain". But I was startled that I couldn't coordinate my hands in the shower to wash my hair. I managed to get dressed, but felt "dazed". When I made it downstairs to the landing of my stairway, my husband asked me if something was wrong. I couldn't put a sentence together. We decided that it was another episode like the one I had experienced 3 years earlier; it had been dismissed as a complex migraine after a 1-day stay in the hospital. I had a breakfast of cereal like on any other day.

I am thin, have low blood pressure, a slow pulse, low cholesterol, and was only 57. In short, I did not consider myself the "poster child" for stroke. Even though I had started the day feeling energetic, I slept most of the day, but late in the afternoon, when I did not know how to operate the remote control for the TV, my son was concerned. He called my brother, who advised him to call 911. I'll forever be impressed by the grace he showed under pressure, as he calmly explained the situation to the 911 operator.

I was taken by ambulance to the hospital and was admitted after all sorts of testing. Because I did not arrive at the hospital in the magic hour to get atp, they would just wait and see how it played out. I fully expected to be told the next morning that it was just another migraine. I was amazed when I was told that I had had a stroke. It was attributed to a PFO (patent foramen ovale), a fairly common opening between the right and left atria of the heart. It usually closes shortly after birth, but about 20% of the population has an improper closure. My history of migraine is my primary risk factor for stroke, and I am a firm believer that stroke and migraine are related, especially when it comes to PFOs. 12% of the general population has migraines with auras (flashing lights, speech disturbance, etc.); 40% of those with PFOs have migraines with auras.

I was evaluated by a speech therapist first. I could not name the days of the week, which was frightening, considering that I am a teacher. If she started naming them, I could continue the list, but I could not initiate it. This deficit worried me, because my mother had a stroke five years ago, and has had aphasia ever since. That would mean retirement due to disability for me. At the same time, I was fascinated to experience aphasia from the patient side.

I am also right handed, but after my stroke, my right hand was weaker than my left. My legs seemed unaffected by the stroke.

I was worried about my class, which had tests coming up. I had materials prepared and sitting in folders in my classroom, but had a difficult time describing what they were or where they were located to my husband so that he could tell my coworkers where to find them. I wrote instructions, which my husband read back to me before calling my principal.

I had two sessions with the speech therapist and followed all of her recommendations for recovering speech. When I was discharged from the hospital two days after my stroke, I started outpatient therapy. I could see that the images were simple drawings, and remembered them from my mother's speech therapy, but had a difficult time matching the words with them. I had a feeling that I should know the answers to her questions, but was initially unable to provide them. For homework, the therapist advised me to name 10 things in the room as soon as I walked in. She said that when that became too easy, I should name the parts of the computer, or parts of the oven. Then, when that became too easy, I should open "that drawer in my kitchen with all of the unusual gadgets in it" and name them. I was on my own after only two sessions.

I also had two sessions with the occupational therapist working on hand strength. I stayed at home recovering for two weeks. My husband, who had had a minor stroke five years earlier, kept asking me questions, but they were the same questions (what day is it, what are the dogs' names, etc.) I spent time on the computer. Emails took a long time to type. I just couldn't seem to find the correct keys, or coordinate my left and right hands.

I looked up a list of words on an 8th grade word list, and spent time looking at them and working to describe what they meant (words like chasm, and resplendent). I spent hours writing line after line on a legal pad, to get my handwriting under control. In the beginning, it was very shaky and illegible, but after two weeks, it was coming back.

I went back to work after two weeks. I told my students what had happened to me, and explained that I was still unable to multitask. They waited patiently as I helped them one at a time in the classroom, rather than trying to answer questions from many students as before. They were relieved to have me back, and were very patient with my recovery. I still think that one of the best ways to recover is to go into a classroom and have to answer questions from eleven-year-olds that are unpredictable.

Spring break gave me an additional ten days off after 4 days on the job, and by the end of the month, I felt that I was able to function well enough to continue to work. I still find myself searching for words occasionally, and documents take me a little bit longer to compose and type simultaneously, but I find that I am a better teacher when I focus on one student at a time. I am on a statin drug and a daily aspirin for the stroke, and still take the Depakote to keep the migraines at bay.

I felt well enough to go on a field trip with my students 9 weeks later, but the trip was interrupted midday by a text from my older son that he was going to the hospital with my husband, who was having his second stroke in six years. Just like his earlier stroke, he felt fine up to the moment the clot struck.

Here I was adjusting to the setback of my own stroke, when I had to jump into the caregiver role for him. Although he was given t-PA, it did not dissolve the clot and he had more extensive damage as a result of his stroke. The stroke was still damaging his brain the next day. He was discharged to the traumatic brain injury section of a rehabilitation hospital, where he spent a week. Initially, he was unable to feed himself, and was not ambulatory. He received therapy to learn to walk with a walker, and gradually, he was able to feed himself. After a week, he was discharged to home.

Fortunately, he was already a retired Social Studies teacher, so he could recover at home. My son was home from college and took care of him during the day, and I took over when I got home. He needed help in the shower, used and used a urinal day and night. When summer "vacation" began for me, he was still going to speech, physical, and occupational therapy for three hours 3 times per week at the hospital's outpatient section, then it was reduced to twice per week. Our neurologist suggested that he see a cardiologist, and he found out that he has atrial fibrillation, which probably caused his first stroke, as well.

By the time my son went back to college and I started the new school year, he had recovered enough to stay alone during the day. Unfortunately, he struggles to recognize letters, so he can no longer read most words. He has lost half of his vision in both eyes (not due to eye damage, but due to damage to the left side of his brain). He cannot drive because of the vision loss, and his right arm causes him discomfort. He can no longer come up with the names of many common objects, and the Social Studies knowledge that was second nature to him is largely lost. We watch Jeopardy together, and occasionally, he gets a geography or history question correct, so I know the information is inside, just needing another way to be tapped. His friends pick him up weekly for happy hour to have dinner together, and that keeps him in the loop. He struggles for words, but can still cuss at the political shows and the news, so I know he's still thinking.

Having a stroke has made me feel more vulnerable. I know stroke can affect someone who doesn't even know they have risk factors. I go to the gym once or twice a week (I know I should go more often, but I figure any time is more than no times a week). I work from 7:50am to 4:30 or 5pm five days a week. I drive to see my parents, who are 87 and 91, in their assisted living facility once a week. Although my mother still struggles for words, she is able to say, "It's boring!" when asked how things are.


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