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.


Gerry Sandusky said...

Sharing the stories of the journeys our loved ones make in the dark, frightening realm of dementia and Alzheimer's is imperative. Thanks for sharing your Chicken Soup story. The broader we make the conversation, the more we will find answers.

My father, John Sandusky, a long-time NFL coach, suffered from Alzheimer's in the last five years of his life. I capture some of his journey in my new book, Forgotten Sundays. It comes out in April. Here's a link:

I hope it adds positively to the conversation.

Anonymous said...

Thank you so much for having the kindness to share this beautiful, heartfelt, very human story about your father. I am at the very beginning of this painful journey and your words were comforting.

abbwa said...

ESTELLA & SYLVIA is for you. This novel is the refreshing break you need while caring for that special loved one.

—”This is one of the most unique family stories I’ve ever read. I found myself rooting for the whole family. It also helped me as a caretaker.” Frances Blake, just a book lover who enjoys a good story while caring for her sick mother.

Unknown said...

I also loved my mother's Alzheimer's humor - and she became a light in my world during her last years. One spring evening the caregiver, my mother, and I were watching a drama about Joan of Arc, with Peter O'Toole as the thundering cardinal demanding to the religious "court," DO NOT BELIEVE as he strings out one accusation after another. He ends with "Judge her on one thing only ... her PRIDE!" There is a pause, and my mother, in a teacup-voice says, "We WILL." So much for Joan.

Enjoyed your memories! Barbara Erakko

Unknown said...

Wow, what a great thread! You can also check out this cool product from MIT which helped a lot of seniors especially those who has dementia, Alzheimer's Disease or any other mental health problems. It is in a form of cute and talkative puppy! Here is the link of their site


Unknown said...

Wow Dan, this innovative solution was helpful with my mom's Alzheimer's. It has been her companion for a long time and it indeed was helpful with mom. Her puppy was a constant companion, reminds her about her medication, shares family memories and it has been the greatest decision my family and I did for mom.

I hope people check their website, an awesome innovation!!!

Unknown said...

We've been looking into facilities for my mom (as our work schedules no longer allow us to care for her personally), and we've been nervous about her being completely unstimulated because no one will be familiar with what activities/conversation/things make her light up even with Alzheimer's. But the dog is going to be key! We are going to rethink our priorities and put pet-friendliness at the top of our list. Hopefully that is not a difficult thing to find in assisted living facilities.

Unknown said...

Hi, Just discovered your blog and thoroughly enjoy your light touch. Of course dementia is disturbing and depressing, but lives are being lived and that means joy and levity as well.
I volunteer with the Canadian Alzheimer Society and write caregiving articles on a blog: If you have time to look at it, I would most appreciate hearing your comments. Sincerely, Andrew Pick

researching Alzheimer's said...

Thank you so much for sharing your experiences with the world. So good to see this other side to the Alzeimer's story.

Romare said...

It is amazes me the human spirit and the desire to do great. We are often affected by the hard diseases of life

Unknown said...

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