The Chocolate Bar

“Is Pesach over yet?”  my father asked.  It was Sunday, April 15, 2001.  It was the last day of Passover, income tax day, and also Easter Sunday.

“Yes, Dad, it’s after sundown now.  That means you can eat bread with your dinner.”

“That’s good.”

“Yes, it is.  And I brought you a chocolate bar.  I know Max usually brings it, but he couldn’t come tonight, and he asked me if I’d give it to you.  He told me to make sure to get the extra big Hershey bar, that that’s the one you like best.”

“Max is a good boy.”

Max is my son.  He was eleven at the time.  We had a weekly ritual of visiting my Dad, his Poppy, at the assisted living center on Sundays. We always stopped for the chocolate bar on the way, and Max would present it to Poppy when we arrived. Sometimes my husband and our daughter, then 9, would also visit.  But Max was his Poppy’s special friend, and he almost never missed a visit.

This week, though, we’d been away in Washington, D.C. for the weekend.  My husband and I had taken the kids for a museum tour of D.C., and we’d seen the Hirschhorn, the Native American Museum, the International Air and Space Museum.  We returned home late Sunday afternoon and the kids were exhausted.  Max offered to come with me when I got up right after dinner and said I was going to see my father.  It wasn’t that late, and Max didn’t have homework, but for some reason I felt like I wanted to go alone.  Given how tired he was, Max didn’t protest.

“Don’t forget the chocolate bar, Mom.  Hershey’s milk chocolate, the biggest one they have at the drugstore,” he instructed me as I headed out the door.

It was about a 40 minute drive to assisted living.  It would have been easier if he’d been closer, but this one was the best fit because it was a Jewish facility, and my father had always been very connected to his religion.  As he became physically and cognitively impaired from Frontal Lobe Dementia, a form of dementia that causes more loss of judgment and insight than memory in its early stages, and also causes gait disturbance, an environment that included a synagogue, a full-time rabbi, and kosher food was comforting to him.

He had first lived independently in an apartment when he was still able to walk and care for himself, then had stayed in the apartment with an aide to help him during the day, and finally, after a prolonged hospitalization for congestive heart failure and pulmonary problems, was moved to the ‘Care Center’, the  section of the facility that was essentially a nursing home.  The care was good, and he was comfortable, but I feared he would be lonely now that he was unable to attend most of the activities or go out on excursions, so I hired a companion to sit with him and take him on walks during the days.  I visited at least one evening a week as well as Sundays, and often felt I should go more often, but my medical practice, children and household were all competing demands.  He didn’t seem to mind, though.  I think time was kind of blurred for him by then, and he didn’t really realize how much of it passed by between visits.  He did, however, continue to recognize me and my family, and when we came to visit, he carried on fairly lively conversation, though most of it was about the distant past.

Before the assisted living, I thought he’d live with us, with a companion during the day. That was a bad idea.  He stated with us for less than six weeks, and he hated it, saying that between all our comings and goings, the kids and our two dogs, there was too much commotion.  He asked me to find him a ‘continuing care community’.  That was smart thinking from a man who was on his way to dementia.   I could see well before he entered the Care Center that we would never have been able to give him what he needed.

When he first lived in the continuing care facility, he participated in lots of activities.  He went to Shabbat services, current events, physical therapy, Sunday outings to Chinese restaurants, weekday trips to the mall. He went to dinner in the dining room each night, often accompanied by one of the many women there who had a crush on him.  Once he was impaired enough to live in the Care Center, he didn’t seem to miss any of that.  He was content to sit in his lounge chair and listen to opera or classical music for hours, or to watch TV, or be taken on a wheelchair ride by his companion.

I think what he did miss were trips to the grocery store.  He had always loved browsing the food aisles, the deli, choosing vegetables and fruit, even when I was a child.  When he lived in the apartments, he looked forward to the days that the center’s van would take the residents to the Pathmark.  It was something I had trouble understanding, as grocery shopping was just a necessary evil to me at that time.

Driving to the center that night, I remember wondering how long my Dad could hang on like this, half in reality and half in his own world.  I’d already witnessed so many stages:  the beginning when, if you hadn’t known what an erudite, intellectual, and refined person my father was, you wouldn’t have noticed anything at all, the slow decline to confusion and the need for a walker, then loss of independence and motivation, the stage he was in now.  In between were the hospitalizations for other medical issues, and, recently a frightening episode of vertigo and neurologic pain, which thankfully had passed.  This current state of doing and saying little, but appearing comfortable and still enjoying things, was not terrible, but it felt like limbo.  And I knew it couldn’t last.

When I arrived at assisted living, I made the turn the the Care Center, and greeted the nurses as I walked by their station.  They seemed to be on short staff, probably because it was Easter, and my father’s companion also had the day off.  I didn’t expect him to be as well-groomed and neat as he was when she was there to pay attention to him all day, but I was a bit surprised to find him completely disheveled, shirtless, and with his dinner tray untouched and pushed to the side of the lounge chair he occupied.  His white hair, the beautiful thick white hair that everyone admired, was uncombed.  He had a sort of wild look on his face.

“Hi, Dad!”  I said in a falsely cheery voice.  “What’s going on?  Where’s your shirt?  You must be cold.”

“No,” he answered.  “I took it off.  It’s hot in here.”  I saw the shirt tossed to the side of his chair.  It was certainly not hot in the room.

“Here, let’s put it back on.”  He obediently raised his arms as I slipped his long-sleeved polo shirt over his head.  I took the comb from his nightstand and combed his hair.

“Why haven’t you eaten?  Do you need help with your tray?”

“There’s bread on the tray.  It’s Pesach, isn’t it?”

“Not anymore.”

“Is Pesach over?”

“Yes, you can have bread with dinner tonight.”

“Good.”

I wasn’t sure if his unkempt appearance and the confusion about the food was because the nurses had not had the time, or the desire, to help him, or if he had actually thrown his shirt off and messed his own hair up.  But I did notice a difference in him.  Once I put the tray in front of him, he ate clumsily, and with abandon, spilling food on himself.  That was new.  As soon as he finished his dinner, he opened the chocolate bar and began eating.  I chattered at him, but he didn’t respond.  Instead, he seemed to be laughing to himself, as though he had a private joke that he was not going to share.

“What’s funny?”  I asked.

“Funny?  Nothing.  Are the taxes done?’

“Yes, Dad, I made sure they were done and went out a few days early.”

“Good.”

He was polishing off the extra-large Hershey bar, pretty quickly.  Usually he only ate a little, and saved some for the next couple of days.  I thought about saying something, telling him to slow down, that he shouldn’t eat it all at once.  But something stopped me.  Why shouldn’t he eat it all at once if he wanted to?  What difference did it make?  Clearly he was getting worse, and if a chocolate bar gave him pleasure, I was not going to ruin it for him.

I cleaned up his spills, put a clean shirt on him and put the tray out in the hall.  I asked him if he wanted to get into bed, but he said no, he’d just sit, and asked if I could put on some opera music for him.  As he listened to the music, he dozed off, and I decided it was time to go.

“How long is THIS going to last?” I wondered to myself as I got in my car.  What is this?  Was he hypoxic, septic, delirious for some reason other than dementia?  Did it matter?  He wasn’t in any distress.  He seemed to actually be enjoying himself in this even more altered state.  So I did nothing.

My phone rang at 6 am the next morning.  I answered it, still half asleep.  It was one of the nurses from the Care Center.

“I’m sorry to call you so early in the morning,” she said. “I went in and saw your father this morning.  Took his vital signs, everything was fine.  But when I went back with his meds a few minutes later, he had died.  I’m so sorry.”

“He died?” I asked.  “Are you sure?”

“Yes, I’m sure.”  She answered me so respectfully, as though it was a reasonable question.

“Okay, what should I do?”  I knew what to do, but somehow I had forgotten.  Call the funeral home.  Go see him before they come, if I want to.  Start making arrangements for a funeral.  But at that moment it all had escaped me, and the nurse had to give me step-by-step directions.

I woke my husband, told him, and we got ready to go.  I still didn’t quite believe he was dead.  A thousand thoughts passed through my mind on that last trip to the Care Center. You might think that I’d have felt guilty for not acting the night before, when I wondered if there was some acute medical problem.  But I didn’t.  What I thought was, “Maybe the chocolate bar killed him.”  I know that makes no sense, but that’s what I thought.  And then I was glad that I hadn’t stopped him from eating the whole thing.  Because at least he got to have something he enjoyed on the last night of his life.

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~ by drrozkaplan on January 19, 2012.

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