Word Search or What a Difference a Stroke Makes

This is not a poor pitiful me post. It is what it is.

It was 3 AM when I heard a feeble cry for help come across the baby monitor this morning. I jumped out of bed and ran I rolled over, grabbed my AFO and shoes, donned my AFO and shoes, pivoted myself into an upright sitting position, stood up and hobbled to my husband in the living room. I was holding the wall for added support because my bedtime medicines of Valium, Baclofen, and Zanaflex still had its semi-potent sleepiness effect on me.

Normally this wouldn't be a problem because  I do it so much, but this morning it was killer. Last night about 11PM my husband upset his drink all over his bedside table soaking everything including his pill box. Four doses of meds gone. Poof. Up in the air like smoke. I'd just taken my bedtime medicines. I got him into a chair, clean up the mess including changing his bed and him, and got him back in bed and comfortable took up most of the lee time between taking my meds and hitting my pillow. I was an hour late because I was working on my sister's shawl pattern to place beading on it. I refilled his pill box and made sure he took his medicine before I wobbled off to bed myself.

I found my husband standing beside his bed fumbling with his bedding and bare butt mooning whoever cared to look. I asked him what was going on after installing him into the rocking chair and putting his oxygen back on.

Little Bit, the cat, had decided to sleep with her Daddy. She couldn't lay on the bed because her older sister, Patches, took up residence in the prime sleeping spot next to him. So she decided to sleep on his bedside  table across his knees. Being a cat, she will sleep anywhere she wants and gradually push stuff away making a comfortable spot. Well, this included a Coke Zero which was a half full can when he fell asleep. You can guess the rest.

After searching through a box of thirty-year old sheets, I finally found a twin sized set of sheets. Why did I search for sheets? All the twin sized sheets were soiled that I bought for his hospital bed. He was safely enshrouded in clean sheet that bear pink, blue, and aqua flowers leftover from our children's childhood. My night medicines are now down to a dull roar and it's almost time to take my morning medicines. If I go back to sleep I'd never wake up in time to take mine or give his.

I sink wearily in my office chair. My office is now located between my husband and my bedroom. I stretch the tense muscles in my neck knowing that a headache will form if I don't. I call it snap, crackle and pop but there is a term for this. I know there is but I can't remember. It's one of know that I know because I've used umpteen dozen times before. It drove me batty trying to think of it.

I make no bones about my cognitive deficit since my stroke. I have a real problem recalling data through the maze of dead tissue...otherwise known as my brain. I'm always searching for words meaning what I want to say. After thirty minutes, the word came to me ...CREPITUS! Thank you www.dictionary.com for how to spell the word from my mangled attempts.

crepitus  (ˈkrɛpɪtəs)
— n
1.     a crackling chest sound heard in pneumonia and other lung diseases
2.     the grating sound of two ends of a broken bone rubbing together 

As an author, many of us search for the perfect word to say what we mean. I was no different. Usually it meant editing a word ten times to hit the perfect word to say what I mean and other times it sprang instantaneously in my mind. Now, after a two strokes, the words just don't come that easily. Not without a pause, a half an hour, or maybe hours of searching. 

On a whole, I'm better than I was just after my stroke when every other word was a word search. Now, it's about every tenth word so I can at least talk in full sentences. So many times I have said, "This is not the right word, but..." when speaking to others and then They will tell me what the word is or understand because of the context it's used. I miss being able to do that. It's kind of a fill-in-the-blank type thing for me now. But at least I can utter more than 100 words.

It may be delusional, but that's my story and I'm sticking to it. Now that all meds are given and taken for the early morning rounds, I'm heading back to bed for a couple hours of needed sleep before it's up again in the life of an author, stroke survivor, and caregiver.

Anyhow, that's my morning so far. How's yours going?

 

Sunday Stroke Survival ~Read My Lips

 For me post stroke it was an imperative that I form words correctly even if the sound wasn't right. My husband is deaf and reads lips. It was going to be the only way we could communicate short of our own limited version of sign language.

With my stroke came aphasia. I had extreme difficulty forming and saying words. In fact I couldn't vocalize anything except for guttural sounds.

Now imagine you are having a stroke or had a stroke with a very droopy face trying to form the words, "I need help!" to a deaf spouse who reads lips. That was me almost two years ago. My mouth couldn't form the words right for him to understand. I had to call my daughters to get help. Even though my speech was badly slurred and staggered they knew something was wrong and came running to my aid.

I spent hours in my hospital bed, with the speech therapists, and a mirror forming letters before I came home. I practiced in front of that little mirror every chance I got. Granted mine was a unique situation. I had to make myself understood one way or other. In the hospital, there was one nurse who understood sign language which helped immensely. While I am well versed in signing, my husband never learned. I was thankful that I remembered how to sign for basic needs because my facial expressions were still in the relearning stage.

Still coming home and communicating with my lip reading husband wasn't easy. There was a lot of trials, errors, and repeating that went on the first month home. He had to learn my new mouth movements. Now after over eighteen months of being home, we've reached a happy medium of communicating. About 90% understandable speech.  I still have to repeat myself which gets aggravating, but at least we are working through my aphasia and his deafness.

Accents, the way people speak, the formation of words can look differently to a person who reads lips. It all depends on what you've been accustomed to. For my husband, I will test whoever is going to talk to him that day with twenty words, repeating them after me so my husband can get acclimated to the way they speak. After that it's up to them to pronounce their words so he can understand them. If he doesn't understand he will look to me and I will either a repeat or further make him understand. With the revolving door of aides and nurses with hospice, this is a challenge. I always try to be present when a new one comes in for the first couple visits. So if you think reading lips is easy, think again. By the same token when I am struggling with a word he will supply it.

For examples- Our #2 daughter barely opens her mouth when she talks. She doesn't mumble but her lips barely move. This is in part due to rheumatoid arthritis in her jaw. When she talks to him it's an extravagant speech and lip movement for her just so he can understand her. Our #3 daughter speaks in deafening tones which he catches every second word or so. I can't make her understand that it is the way her lips moves versus volume that he hears. Our #4 daughter speaks loud and fast, and is very animated.  Our #1 daughter speaks  slowly and clearly. He understands them perfectly. The 1st one because he is able to read her lips and the 4th one because of her animated speech fills in the gaps of what he doesn't catch. Interestingly enough in the picture- #2 and #3 daughters are on my left, and #1 and #4 daughters are on my right. They have all learned to get him to focus on their face when they are talking to him.

I remember my then six-month old grandson emulating me as I sat in my wheelchair in the hospital. Today he speaks loud and clear with a vocabulary of a 4-year old at 2 years old. Forming sounds with your lips is half the battle in communicating. Me, I speak well enough to make myself understood. There are lags in my sentences as I struggle to find words and think how to pronounce them, but not as much as a year ago. I'm healing and relearning to communicate each and every day. The aphasia is easing its grip on me as time passes and I realize how lucky I am. But if it had not been an imperative that I formed words for my lip reading husband who knows if I'd had recovered so fast. I'll take that blessing.

Nothing is impossible with determination.