Thursday, February 06, 2014

Look at Them Swim

This is the essay I submitted to Chicken Soup for the Dementia Soul.  I did not hear back from them, and the book comes out on 4/22/2014, and you're supposed to hear back two months before.  So here it is for your enjoyment, and  you don't have to buy the book.

Look at Them Swim

Dementia is a terrible disease and as it progresses, most days are filled with incidents we’d rather forget.  But every once in a while, there are brief moments of joy and laughter.
My dad had Alzheimer’s for four years, and his first symptoms were speech-related (aphasia).  As the disease progressed, what he had to say became more and more random and often unintentionally hilarious. 
Some people have said, “How could you laugh at your sick father?”  Those people have never lived with someone who has dementia.  You take the fun where you can get it. 
His lack of connection to the real world sometimes made him adventurous.  We’d take him out to eat and he’d look at the pictures on the menu. 
“What do I eat here?” he would ask us, pointing.  “Do I eat this?  Does this one go with that one?” 
“You like this one,” I’d show him.  “Remember?  We used to get it when we went on vacation in Plymouth every year.”
“Oh, the beach!  I like it there.”  And he’d be off, talking about the beach we visited every summer for thirty years.  How we would walk around in the tidal pools at low tide looking for starfish and sea urchins and once in a while even a lobster.
Meanwhile the waitress is waiting, looking annoyed.
“So do you want to eat this?”
“He has Alzheimer’s,” I’d explain, and order his food for him.  It was always amazing how people who were impatient or angry with my father’s weirdness changed instantly when I said that, often going out of their way to make sure he had a good time (even if we were just at Home Depot buying some nails).
Once the food came, my father would look at it doubtfully.  “I don’t think I like this,” he would complain.
“You do,” I would assure him.  I never ever lied and made him eat something he hadn’t liked before.
“How do I eat it?”  Sauces and side dishes confused him.  “Does this go on here?”
I’d show him the “right” way and he’d eat some of the food, and then his face would change.  “I remember this!” 
He knew, you see, that he had Alzheimer’s.  He didn’t ever seem to understand what it was, though.  He called it “this thing in my head that’s killing me” and carried around a scrap of paper on which he had carefully written ALZHEIMERS in his precise block printing, that he could show people.  Then he would display his Safe Return bracelet, and if I was there, he would point to me and say, “That one gave this to me” like it was a prize. 
He knew he couldn’t remember.  He knew he didn’t understand.  And when he did remember, or understand, he would be so happy.
“We eat this at Plymouth!” 
“Yes, we do.  It’s good, isn’t it?”
And he would be happy, for a little while, and so would I.
I don’t know when he forgot who I was.  My name left his head very early, along with all names.  I was “that girl.”
He didn’t know who I was, but he knew he liked me.  If he was out with my mom and they saw an SUV like mine, he would get all excited and point. “Is it that girl?”  If he saw an overweight redheaded woman on TV he’d think it was me.
He was injured one night while I was visiting—he got in the middle of a fight between the cat and the dog—and the cat opened an artery on his hand.  I used first aid to stem the bleeding until the paramedics arrived.  When they did, and fixed him up, he pointed to me.  “This girl, she helped me.  She saved me.” 
When I left that night, he followed me out to the car and very shyly asked me for my phone number.  “In case I get in trouble again.” 
I wrote my home, cell, and work numbers down. 
He stared at the paper and then at me.  “I know these numbers,” he said slowly.  “I know YOU.”
“Yes, you do,” I said gently.
As his disease, and his aphasia, progressed, conversation became more difficult.  I used to call it Alzheimer’s Mad-Libs. 
I called looking for my mom and my dad answered.  
“Bob,” I said, “Where’s Ann?”  Dad and Mom were concepts long gone.
“Oh,” he replied.  After a long time, he said, “She took the thing to the place, for the, you know.”
“Tell her I called.”  I tried fruitlessly to explain who I was.
When my mom got home, of course he said, “They called.”  She had no idea who. 
Meanwhile I’m at home playing fill-in-the-blank.  She took the dog to the vet for shots?  The car to the shop for repairs?   Grandma to the doctor for her eyes? 
My mom got Caller ID after that.
We had a dachshund and a tuxedo cat, raised together as best friends, who had both died not long before his diagnosis.  I’d bought them a Siamese cat, but my dad missed the dog.  When he took walks with my mom, he would approach every dog and think it was his.
My mom did not want to start over with a puppy, not while dealing with early-onset dementia (Dad was 63 at his diagnosis).  I found a nice older rescue dachshund in Massachusetts and arranged to go pick him up.  The day before, my mom bought a leash, collar, bowls, and toys. 
My dad piled everything by the door. “Take it all back,” he said.
“Don’t you want a dog?  You miss the dog.”
“No.  Take it back.”
We decided to get the dog anyway.
The three of us drove 90 minutes to the rescue place.  We gave a donation and loaded me and the dog into the back seat. My dad kept turning around to look at the dog on the way home.
“Can I pet him?”
“Yes, you can pet him.”
Nothing about taking the dog back or not wanting a dog, of course.
He’d pet the dog, stare at him, stare at me.  Finally he said, “That’s a nice dog you have there.”
“That’s your dog.”
“My dog?” His whole face lit up.  “My dog?”  He was like a child at Christmas.
When we stopped to walk the dog at a rest stop, my dad couldn’t stop petting him. 
“Do you want to sit in the back seat with him?”
“Oh yes.”
All the way home he hugged that little dachshund.  When he was dying a year later, I brought his dog to him.  He had been unresponsive for days, but he moved his hand and put it on the dog’s back and kept it there until I took the dachshund home.
My favorite memory of him is when he was looking out the window at Mom’s flower garden, where beautiful butterflies fluttered among the colorful blooms.  He pointed and said, “look at them swim!” because he had forgotten the word “fly.”  He loved butterflies and I dearly hope that wherever he is, he is swimming with them right now, and that he is glad that when we remember him, we laugh.

Monday, February 03, 2014

dementia patient hit by train

The first time my dad went missing, he was really lost.  The second time, though, he was angry.  He was going to go walk in front of a truck.  He wouldn't get into my car (once he was located) and it took a police officer to get him into a vehicle and home.
It's really hard to judge how much people with dementia retain.  The last time I saw my dad before his catastrophic head injury, he surprised me by hugging me and saying he loved me.  Did he know who I was that day, or was he just happy "that girl who helps me" came to visit him at the nursing home?  I'd like to think it's the former.  In that situation, we all hope there was a spark of recognition there, just for that moment.
We'll never know what was in this dementia patient's mind when he managed to escape his nursing home and walk into a moving train on Saturday night.  The unidentified man, in his 70s, was not even reported missing by the nursing home until an hour after he had been hit by the train.  Who knows how long he was wandering outside in Canada in February.
Police said the train engineer sounded the warning horn, but the man continued to walk toward the train....(T)he man was conscious, breathing and talking when first responders arrived.
Mighty fine reporting there.  Conscious and breathing?  Talking and breathing?  I think the breathing is a given when someone is conscious and speaking.
The man is now in the hospital with undetermined head injuries.
I'm trying to envision this.  Was he walking down the tracks, directly at the train?  Was he walking perpendicular to the train, toward the side of it?  Another article says he was walking down the tracks.  That train engineer must have stood on the brakes not to have completely taken the old guy out.
The nursing home doesn't seem to be too broken up over one of their dementia patients, who should have been in a locked, alarmed ward, wandering off and almost getting killed by a train.  There's no mention of any family, unless the "unidentified" part means the family hasn't been notified yet.  The second article I found was only a few hours old and still says that.
I don't understand how, in the technologically advanced 21st century, how an old man with an addled mind managed to escape.  How difficult would it be to install, at every exit, RFID readers that also required a code.  If a patient learns the code, she still hasn't got the card, and if she's stolen a card, she (hopefully) doesn't have the code.  Employee's card is missing, immediately remove that card's number from access.
RFID chip and grain of rice
You can get something that works in reverse as well--you can get it for cat doors.  The cat door has a chip reader and your cat wears the chip on its collar.  Any animal without the chip can't enter.  So only your cat, not your neighbor's cat or a raccoon or a skunk or a family of hungry rats.  The one I linked to even works off the animal's already embedded RFID chip.  (Because if you love your pet, you'll chip it at the same time you get it fixed.) 
The embedded chip is the size of a grain of rice and there is no reason that it couldn't be embedded in a person.  They aren't tracking chips (not yet anyway) but they would work for doors.  I know Bible lovers think RFID chips are the mark of the devil but they need to get over themselves.  The first time a child or a mentally handicapped person or a dementia patient is found because of a microchip, their tune will change.  One would hope.

Screen print of first articleScreen print of second article. RFID chip