Family & Caregiver
For the Ones You Love
Don't procrastinate taking care of yourself. Your health determines the length and quality of your life. If you're a caregiver, it also determines the quality of life for your loved one.
I suspect that each of us has made mistakes in life.
We suffered the consequences.
If all went well, according to the Great Plan, we learned from our mistakes.
Sometimes, we make mistakes that are so grand in their import that we hope that others will learn from them and thus avoid suffering the consequences.
This is the story of one of those times.
In 2001 I was working as a pharmacy technician. I met my first stroke survivor soon after I'd started. I had never seen one (stroke survivor) before and had no idea, without asking, what was wrong with this man.
He was a young man, in his early forties. He was paralyzed on his right side, with his right arm seized against his chest and his right hand in a perpetual fist.
He could not speak. He walked with a distinct limp, like his right leg wasn't even real.
Eventually I learned that he had suffered a stroke six years earlier while sleeping and lay undiscovered for some time. He remained in a coma for six months and, when waking, could not walk or talk or eat. He didn't even know his name.
With therapy he learned to eat again and, eventually, he learned to walk again.
With therapy he learned to use his right hand again. He learned his name again but he could no longer read or write. With years of speech therapy he learned to talk again.
When we met, he could scrawl his name and numbers. He was re-learning the alphabet. He still struggles to recognize letters. He draws them in the air when he cannot name them.
A feature length film could not capture the romantic comedy of our falling in love and getting married. The opening scene would be the day he gave me his phone number when he was coming off the bus and I was going on. Then we'd watch how he phoned me and we talked for three hours.
We'd watch how we spent our first date at the Social Security office. That was the day I learned of his fear of falling. How I use to rub his feet every night and bandage them. It was when I learned of hammer-toes and foot surgery.
We associate our story with the movie "50 First Dates", except he's the girl and I'm the guy. When he told me he loved me for the first time, I asked him if he knew my name. He didn't.
We enjoyed a rollicking comedy as I learned to understand his language. Things like lights that are open or closed. Or windows that are on or off.
We were married on April 15th, 2005 and I learned to be a caregiver.
I had not seen the inside of a doctor's office in over a decade. And I hadn't had a prescription drug other than antibiotics and painkillers even then. Now I had a husband who required lots of prescriptions, frequent doctor appointments and emergency room visits more than I care to mention. I learned his medical history. How he's allergic to penicillin and bee stings and cats. And how he had a feeding tube while he was in the coma and how the scar in the back of his head is from where they opened his skull and inserted a shunt to drain the fluid off his brain. I can list every one of the medications he takes, the dose, how often and why.
I never stopped long enough to look after myself. I couldn't take time away from work and him.
There's nothing wrong with me except allergies and menopause. It had been a long time since I'd been treated for anything. Well, except for sinus infections and a pinched nerve in my back in 1994. Last time I had my blood pressure checked it was 173 over something. But that was from the pain or because I was sick.
And then, on a Sunday evening, late last October; I was watching television with my husband. I had not been feeling well, a headache or maybe a head cold, so I'd taken some Benadryl and Ibuprofen. And I fell asleep for a while. When I woke up, my right arm was numb. I must have slept hard. It wasn't tingling. I must have slept really hard.
I got up to use the rest room and looked at myself in the mirror. My face was different, kind of droopy maybe. Probably from sleeping too hard. I tried to touch my face. My hand and arm were still sleeping and I couldn't feel a thing. I used my left hand and felt my face. It felt okay - it just looked different. I went back to the bed.
My husband asked if I was all right. I'm fine, I mumbled. My tongue felt too big for my mouth. It got caught between my teeth at the back. I wondered why my tongue was swollen.
I called a good friend and told her that I thought I had suffered a stroke and would she be home if I needed a ride to the hospital. I told her not to be worried. If she didn't hear from me she could assume that nothing was wrong. I'd just slept hard and was being paranoid.
I found the remote with my left hand and pressed DISPLAY I blinked and I squinted. The words were blurry. I asked my husband what we were watching.
"Hah!" he said. "Like I can read it! You tell me what it says."
I couldn't see it.
I rolled over and went back to sleep.
I got out of bed the next morning and stumbled to the bathroom.
Gee - just how much Benadryl had I taken?
My face still looked like Droopy Dog. I had a heck of a time brushing my hair. And I sure couldn't use the curling iron. It was Monday; a casual day in our office. I didn't have to go to a lot of effort. I struggled a bit getting dressed. I couldn't zip my pants so I chose a skirt instead (elastic waist band). Panty hose was a struggle but I managed.
We walked to the bus stop, my husband and I. I was more quiet than usual. I told him my head still hurt.
I was afraid to talk. The words were still mumbled.
I got off the bus and stopped at the bank to make a deposit for the rent. Then I walked the rest of the way to the office.
I turned on the computers in our office, with my left hand. I was getting frightened. I sat down to see if I could take down the voicemails. I couldn't punch the buttons on the telephone. I couldn't use a pen or a pencil. I couldn't write.
Just at that moment, Theresa arrived for work.
Happy and smiling, she hung her coat and asked, "How was your weekend?"
I took a deep breath. I just looked at her for a moment.
"I think I've had a stroke," I said.
"I'm calling 9*1*1". She picked up her phone and paused.
I didn't argue.
It was only moments and the EMTs were all around me. I could see my co-workers in the background.
Lots of questions, lots of details, the moments were blurry and rushed.
I got myself on the gurney. They rushed me down the elevator and into the back of the ambulance. It was still early morning so no one was on the street.
The EMT was talking as I listened to the sirens. We made our way the two or three blocks to Sutter Hospital.
His voice got louder.
"I said 287 over 175".
He sounded frightened.
So was I.
"I should be dead," I thought to myself.
I thought of my husband and all that we'd shared. I silently declared to my Father in Heaven, "Okay, I'll leave peacefully, if that's what you want. But, please, please let my husband keep his quality of life."
Due to my lack of concern for my own health and especially having lived with uncontrolled high blood pressure for many years, I suffered the consequences.
The consequence was a lacunar infarct.
A lacunar infarct is small deep infarct that accounts for about a quarter of all ischemic strokes. (http://www.ncbi.nlm.nih.gov)
"These infarcts have commonly been regarded as benign vascular lesions with a favorable long-term prognosis. However, recent studies have shown that this is only the case early in the disease course. A few years after infarct, there is an increased risk of death, mainly from cardiovascular causes. The risk of recurrent stroke after lacunar infarct is similar to that for most other types of stroke, and patients have an increased risk of developing cognitive decline and dementia."
It is a miracle to be alive. It is even more surprising to be able to walk, talk and write again.
The moral of the story from one who knows is this: "Don't procrastinate taking care of yourself. Your health determines the length and quality of your life. If you're a caregiver, it also determines the quality of life for your loved one."
Take care of yourself for the ones you love.