Sample Chapter

Jack’s World, Deep Space Nine

Dulce and I stopped by to visit Dad today.  This pleased mom, who loves listening to the Metropolitan Opera on Saturday afternoon through streaming media (technomom!).

When I arrived at Dad’s floor I got off the elevator and, as usual, saw several staff people at the desk across from the elevator by the fish tank, two drip units standing at the ready.  I smiled, as did they, and I looked down the hallway to my left past the sterile lounge (dining area)–no Jack.  I looked to the right and immediately spotted his listing gate, slowly shuffling down the hallway toward his room.  Dulce and I headed off to intercept him, but before we could get close enough, he opened the door to someone’s room, entered, and shut it behind him.  I read the name plate on the door, Emily someone-or-other.  So, I waited.  I could hear a voice, surely he would exit the room soon.  But he didn’t.  Uncertain about whether to open the door or not, I opted for the easy way out.  I headed back to the desk and asked, “Does Jack enter other people’s rooms often?”

“Yes,” she replied while standing up.  “I’ll help you.”  Smiling, she asked me “Which room?” as we headed down the hallway.

“He missed his room by one,” I said, pointing to Emily’s room.  She opened the door and there he sat upon Emily’s bed, facing the window.  “Dr. Mathews?  Dr. Mathews, you have a visitor.”

“Who?” he looked up at her, startled.

She looked at me quickly, and I suddenly realized I had not introduced myself.  “Sandra,” I said.

“Sandra, and she has a fuzzy friend, too.”  She helped him up by supporting his wrist and elbow.  As he turned around and saw us standing in the doorway, his expression did not change–until he saw Dulcinea.  He smiled and shuffled over to us.  I noticed something in his hand, a sticky note with writing.

“Jack,” I said as I gently took the note from his hand, “I think this stays here.”

“Yes, I was going to leave it here.”

I thanked the nametag-less helper as Dad and I headed down the hallway.  It seemed he wanted to walk.  So we did.  We walked to the end of the long corridor, then back again.  When we returned to his room, I convinced him to go in.  He excused himself immediately to check on his roommate Dale, but he had a nurse visiting with him.  When he returned to his side of the curtain, I convinced him to sit down in his chair.  Before Dulce and I sat upon his neatly made bed, I noticed the sharp end of a hanger protruding from under his pillow.  I lifted his pillow and pulled out  the hanger, upon which he had a pair of sleeping pants.  Dulce and I sat down and I looked into his eyes.

I know this is my Dad, but so much of him has disappeared.  Swallowed up by this horrible disease.  He still needed to feel valued, so I asked how his day has gone.  He told me a very disjointed and impossible to follow tale.  This is the best I could piece together, and similar to how he shared it.

“I got up this morning.  I starting doing things.  For a while.  I kept doing them.  Then someone told me.  But I still tried.  I kept doing things.  They made me.   ‘No, do it this way,’ they said (making an angry gesture).  But I kept working.  Around midnight, 12:30, I went in the hallway.  We expected to find.  [then looking at Dulce].   A friendly dog!” and he leaned over to pet Dulce.

He moved over to the bed and began to pet her.  We talked with the nurse aide, Rose, for a while who happily shared stories of her dog, and told us of her desire to adopt more children (hers are older now).  Very happy woman.  When she left, Dad had an urge to go walking.

We got up and walked up and down the corridor about 4 or 5 times.  Saturday afternoon seems to beckon visitors from afar.  As we passed rooms, people looked up to watch us and admittedly, they drew my gaze as well.  We spied four boys ages 5 to 9 and their dad, visiting a grandparent–the boys perched up on the bed, two in a wheelchair, and the fourth standing perilously and unnoticed on one of the wheelchair’s wheels.  We saw a man in his 30s, sitting next to a slumbering elder, texting someone on his cell phone.  We saw the anorexic nurse aide talking with another aide who stood oddly on some sort of machine in the hallway.  In the lounge sat a woman in a wheelchair, the telltale purple marks of a back-of-the-hand IV, engaged in a conversation with her good son, intent on showing her images on his digital camera.  All the while, the other son and his wife sat across the table, totally disinterested in anything but what appeared to be a new iPad.  She would talk to it and some cartoon character on the screen would repeat back what she had just uttered.  They found it amusing.  The good son ignored them, paying his attention purely to his mother–who, by the way, wanted more than anything to pet Dulcinea.  As she did, the good son snapped several photographs of the love fest between dog and mom.

We kept walking, Dad periodically asking where the door was to get out.  As we passed the desk, I warned the nametag-less woman that Dad sought the exit.  She thanked me.

During one of our passes through the lounge, nurse aide Rose stopped us by the lounge and suggested that he sit and have some juice.  After watching her maneuvering him away from the juice and paper cups, and away from the blueberry coffee cake, he finally sat down next to Dulce and I.  With some difficulty, he ate part of his coffee cake, dropping it into his lap once, then almost immediately, shoving the rest in his mouth at the same time.  And with his cheeks puffed out to tomorrow looking like a chipmunk, he looked at me and made the silliest face, like his cheeks would explode!  I giggled.  His desire for pleasing others remains steadfast.

He reached over, with his chipmunk cheeks, grabbed his cup of juice and drank the whole thing.  After swallowing, he asked me with a very concerned look on his face, “Have you thought about things?”

Dumbfounded, I had no idea what to say.  I said I would be going home to fix dinner soon.  I peaked at a nearby clock and could not believe that nearly 45 minutes had already passed.  He looked confused.  Luckily, Dad is quickly distracted.  He peered over my chair at Dulce, laying asleep on the floor.

“What a good dog.”  He paused to smile.  “She is going to be such a good dog.”

Another nurse’s aide came over, petted Dulce, and engaged me in a conversation about whether or not she should get a mutt–and from what shelter (www.hua.org, of course).  During our conversation, Dad abruptly stood up and walked away.  So, we got up and followed him.  On our way to the hallway, I spotted the blue Noodle hat I had given Dad several weeks ago sitting on one of the tables.

“Look Jack, your hat,” I exclaimed, picking it up and handing it to him.  He smiled, put it on, and kept walking.  We walked to his apartment, then back down the hall the other way.  At the end of the hallway he stopped to examine the fire door with its red handle and warning signs.  He began to read one of the signs to me, but couldn’t make it past the fourth words.  He peered through the window and said,

“If I opened this, it goes down.  Way down.”  I suppose referring to the stairs.

“That would be bad, wouldn’t it?”  He turned away from the door and we began the long trek back again.  I tried to get him to enter his room to wait for supper, but he stopped and looked at me very confused, saying,

“I thought we were going outside?”  His furrowed forehead indicating displeasure.  “Where is the door?  How do we get out?”

“You have to stay here, it’s almost suppertime.  Meanwhile, I have to go home and make supper.”  I tried to guide him to his chair, but he balked.

How am I going to leave, I wondered.  Quickly I looked up the hallway to find the nametag-less woman.  Good, at the desk.  I turned to Dad and said, “I have to go fix supper, I will see you later.  Dulce, come say goodbye.”

He leaned over to pet Dulce and as he turned to look in his room, Dulce pulled me down the hall toward the elevator.  I could see Dad following, so we picked up the pace a little, me pretending to be dragged by Dulce–entertaining people along the way.  I pushed the elevator button, but neither door opened.  I looked over my shoulder and saw nametag-less stand up and begin to walk toward Dad’s room.  Then I saw Dad’s shadow emerge, then Dad.  She tried to redirect him, but he walked toward me.

Of course the elevator arrived at that moment and his proximity set off the alarm.  She said, “You need to stay here, Dr. Mathews.”

“Why?”

“Because Dottie is coming.”

I flashed a look at her without thinking, almost saying, “no she’s not, she’s listening to the opera.”  Then realized, they have a pat answer for my Dad.  Sigh.  Just like in the books I’d read.

He took another step toward me and I put my forefinger on his chest and said, “You don’t want to miss supper, do you Jack?”  My finger providing resistance to his attempt to enter the open elevator door.  There I stood, denying my father physically of that which he wanted most, to leave.  Pushing him away from me.  It broke my heart.  His face betrayed his sadness and confusion.

Nametag-less reached for Dad’s arm and pushed the failsafe button so that several of us could get onto the elevator.  As the doors closed behind me, I heard him saying over the din of the alarm, “I don’t like that noise.”  She had him gently by the arm and was leading him down the hall.

I don’t know how I would interact with my Dad if I didn’t take Dulcinea.  He cannot complete a sentence much less converse.  He speaks utter nonsense more than 70% of the time.  In fact, when I got home, I told my husband that our conversations are more like the recent episode of Deep Space Nine that we just watched.  Entitled “Tower of Babel,” the show’s characters find themselves infected with a virus that makes them speak words that make no sense.  “Light, Shuttle, Lift!”

But deep inside, he believes he has meaning for those words.  He is still trying to communicate.  He is still smiling.  He still tries to make people laugh.  He still has emotional responses and feelings.  I am learning how to adjust, to come up with ways to interact with him.  For now, Dulce is our bridge.  She does her job well.

“Night.  Ice Cream.  Trees.”

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