“And so, it began…” by James Hamilton
“Someone once said, “I don’t know how you do it.” The answer is:
I wasn’t given a choice.”
I was diagnosed in August of 2018 with progressive vascular dementia. I had spent months noticing I was struggling to remember where I had placed items in my apartment. Then I found items in the most unusual places. My lunch kit for school was in my oven. My reading glasses were in my refrigerator along with a science book I had been reading. I had been diagnosed with Type 2 Diabetes a year prior and thought that the medication was causing hallucinations, for which I went to the hospital on multiple occasions. Hallucinations? I was a competent school teacher and a driver for a rideshare service! Yet, I woke one morning to imagine the den in my apartment was filled with wasps. I sprayed around the room and hid in my bedroom until all the wasps would be dead from the spray. After an hour, I went back into my den to get rid of all the dead wasp bodies. There were none. Just a lingering smell of insecticide. On another occasion, I drove to a woman’s home to drive her to her nail salon. A pleasant older woman, who I can vividly recall her dress, her perfume, and our conversation about our grandchildren. I arrived at the nail salon and went to open her car door. Only to discover that there was no one there at all. She had been a figment of my imagination. I actually called the rideshare company to find out what time she had requested the ride. They had no record of the transaction at all. Then, there was my friend, the giant dog. I came home from teaching school one day to discover a LARGE, shaggy, smelly dog standing in my den. Very calm, just standing and staring at me. I don’t own a dog. By this point, I realized I was having trouble with hallucinations and simply opened the door to my apartment and asked the dog to leave. I stood by as he casually sauntered out of my door…and vanished. There was no dog.
Finally, I began having “lost” moments at school, not remembering where I was, who I was, or what I was supposed to be doing. I left on more than one occasion in an ambulance due to “mental confusion”.
Then…. I created “My Paper”.
I took a piece of notebook paper and wrote on the upper corner, “Call 9-1-1”. On the left side of the paper I wrote, “My name is: James Hamilton. I live at 111 NE Loop 410, San Antonio, TX 78148, apartment number 1444. My social security number is: 111-22-3333. I have the following medical issues: progressive vascular dementia, epilepsy, arrythmia, type 2 diabetes, history of strokes and blood clots. I am allergic to penicillin (I swell up) and Dilaudid (I puke my guts out). I take the following medications: Med 1, Med 2, Med 3, etc. My primary care doctor is Dr. Michael Rosedale. His phone number is: 555-444-1234. My neurologist is Dr. Prieto and my vascular specialist is Dr. Bob Smith. My emergency contacts are: Karen, my girlfriend, at 555-444-1233, my eldest sister Cathy at 555-1231. If you are reading this, you probably need to call one of my emergency contacts.” Duh.
I put my paper on my shelf as I headed out my apartment door. It was a permanent fixture in my front shirt pocket, and I got in the habit of touching my pocket as soon as I exited my apartment. I used to love to walk in the evenings after dinner. On more than one occasion, a neighbor in the apartment complex had to guide me back home but understood everything when I handed them my paper. On really bad days, when I had to call 9-1-1, the operator would ask me questions from my paper. At hospitals, I would hand the paper to the check-in nurse and carried it with me until I was released. MANY doctors told me what a great idea my paper was, and they wish every senior would carry something like that with them.
I was in a hospital for the entire month of November 2018. I am no longer allowed to drive. Every day, in the hospital, nurses asked me what the most important thing was for metoday as they created daily treatment plans and goals for me. At first, my answer to what I believed to be most important was “getting back to work!”. I was a promising high school teacher and drove for a ride share service. Soon, my response changed to “going back to my apartment”. I lived alone but was independent. I ate when I was hungry, went shopping when I needed to, enjoyed going to the movies. Now, most days, I can’t remember my name, where I am, or how to perform the most basic of daily routines. I struggle very hard to focus on lost words that will make sense in sentences and to remember how to walk.
I came to learn that the correct response to the nurse’s question regarding what is important is PEOPLE. I am afraid of dying without family or friends. Either not having them by my side, or not being able to remember them at all. They are all slowly becoming strangers to me. And the disease makes me seek solitude. Partially to control the din of everyday life and partially due to the embarrassment of what I am becoming. I am evolving in reverse.
Dying won’t hurt… because I won’t remember it. My faith controls what happens after I die. But knowing I have family and friends makes my journey easier. Yet, they are also on this journey with me and it is brutal. Before receiving my diagnosis, I knew a little about Alzheimer’s, the most common form of Dementia. I thought it only happened to old people and they just forgot stuff. Now I know there are many different types of cognitive impairment and they are all very cruel diseases.
If you know someone with Dementia or Alzheimer’s, please tell them you love them.
While you still can.
“Dementia really isn’t a disease itself. Instead, dementia is a group of symptoms that can be caused by many different diseases,”
Most forms of dementia worsen gradually over time, and there is no treatment. Scientists are searching for ways to slow down this process or prevent it from starting in the first place- Dr. Sanjay Asthana, who heads an NIH-supported Alzheimer’s disease center at the University of Wisconsin.
The symptoms of dementia can vary, depending on which brain regions are damaged. “In general, the left side of the brain is involved in language, and the right side is very involved in social behavior,” says Dr. Bruce L. Miller, who directs an NIH-funded dementia center at the University of California, San Francisco.
“NIH has specialized centers across the country that have clinics that can diagnose and evaluate patients with Alzheimer’s disease and dementia,” Asthana says.
“NIH…Turning Discovery into Health”, National Institute of Health, https://newsinhealth.nih.gov/special-issues/seniors/dealing-dementiam Accessed December 2018,
With some types of dementia, a clear diagnosis can’t be made until the brain is examined after death. “There’s no single blood test or brain scan that can diagnose Alzheimer’s disease or some other types of dementia with certainty,” Asthana says.
“In these cases, a definite diagnosis can be made only at autopsy.”
Great.
Freaking great.
They can tell me what killed me, but only after I am dead.
That makes sense.
“Remember: the dementia patient is not giving you a hard time. They are having a hard time”
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