The Jersey Run: A Caregiver’s Memories of Walter Lewis
By J.S. Campbell
“The life of the dead is placed in the memory of the living.”
– Marcus Tullius Cicero
The following memories may help tell a small part of the story of Walter Lewis, a humble and noble man, who lived life to the fullest.
Pepaw and Me-maw
Pepaw walked in to the room and sat down in his favorite black leather recliner. He had just come in from working in the garden and he wanted a cool drink of water. Me-maw brought him a glass with water and ice.
“Thank you, Gin” he said. Lori looked at Pepaw, “Dylan has just finished working on his Trigonometry.”
“Spell it!” he immediately said.
That was his trademark reply when anyone was talking about something that involved a long word or a word that may prove difficult to spell, off the cuff.
Virginia and Walter Lewis, or Me-maw and Pepaw as they were called by their family, including Lori, their daughter-in-law and Dylan, their grandson, were two of the nicest people you would ever want to meet. Lori was married to their son, Dana who had passed away suddenly of a heart condition some years back. I was now married to Lori and Me-maw and Pepaw had fully accepted me as part of the family.
Virginia and Walter were of the older World War II depression era generation. Virginia had worked for the Department of the Navy during the war while Walter served in the Third Marine Division, being wounded on Iwo Jima. After the war, Walter had spent his career driving buses for Greyhound, over thirty years of service. They had lived many years in Alexandria Virginia, but had built a modest brick rambler on several acres of land in Spotsylvania County Virginia to be closer to Lori and Dylan.
They had a large garden and beautiful flowers planted in spacious beds around their property.
As they were older, we spent a considerable amount of time helping them with various projects over at their property.
Dylan, as a small boy had spent countless hours with them and they loved him dearly.
“How are the beans looking? It’s been so hot, are they getting enough water?” Virginia asked Walter. “Yes Gin, they’re looking very fine.”
“What can we do to help out today?” Lori asked.
“I love working outside, especially in the garden.” I added.
It was always a balancing act when inserting yourself to help them out, a depression era generational rely only on yourself spirit and attitude, that had been honed by their often-harsh life experiences.
“We’re doing just fine” Walter was saying when Virginia interrupted “He could use some help taking down and removing those dog pens.”
They no longer had hunting dogs, and the pens were just taking up space in the yard and starting to really wear from time and the seasons.
“Well, I guess if you don’t really mind, I could use some help.” Walter said, adding, “But I can handle getting those things down myself.”
“It’s no bother at all, I’ve got plenty of time today.” I told them.
“Yes, Pepaw, we already planned on spending time today helping you with whatever you need.” Lori added.
Walter looked over at Lori, and his stare looked to me like he was drawing a blank. He started to say a name that I couldn’t make out but then quickly shifted to a simple “Well ok then.”
I could sense that Lori noticed his hesitation and his struggle with her name as well.
When Pepaw had excused himself to head down the hall to the bathroom, Lori turned to Me-maw.
“It almost felt like he forgot who I was.”
Me-maw leaned in closer to Lori.
“He’s been having episodes like that with me at times too, and I’m starting to get a little concerned. Maybe you can help convince him to get a doctor appointment.”
“Yes, we can just tell him it’s time for a complete physical, he hasn’t had one in almost a year, has he?”
Me-maw replied “No.”
It seemed like countless doctors, countless tests and as Walter put it, “Judgement Day was at hand.” We were sitting in the makeshift meeting room, cramped with extra chairs, as Walter wanted us all there. Dr. Williams entered the room with a hand shake and a smile, but I looked squarely in his eyes, and his eyes were signaling that a different narrative was about to unfold.
Dr. Williams ran through the test results, the scans, and a litany of diagnosis that he said he believed he could rule out in Pepaw’s case, although he referred to Pepaw as Mr. Lewis.
Lori and I had done our homework, we had our suspicions and knew this was about to be the rocky and twisted road that we were hoping Pepaw would not have to travel down.
Dr. Williams explained that in these cases, the diagnosis did not rely on a set test, and there was no specific blood work that could yield definitive results. This was clearly one of those “rule everything else out” kind of endeavors, not an exact science. I had never thought anything was ever an exact science, but that wouldn’t have added anything useful to the conversation. I simply continued to look at Walter’s eyes, trying to figure out if he really knew what was coming.
Pepaw and Me-maw looked at each other with a knowing sense of mutual realization. After a few seconds of eternity, Pepaw then turned back to Dr. Williams and said simply, “Well, doc, I guess it’s time you just come right out with it, what is your rule everything else out in the world diagnosis?”
Dr. Williams, took a breath in as he leaned slightly forward.
“Alzheimer’s” was the only word he said that actually registered in any of our minds.
Pepaw gave a quick glance to Me-maw, and looked back at Dr. Williams.
Dr. Williams looked quizzically at Walter and seemed perplexed by our smiles.
Virginia simply said, “Inside joke.”
The mood turned serious again as Dr. Williams explained to us the process and the progression of the disease, medications, support groups and the absolute need for making this a group effort.
We were told that although there was no true treatment for the disease, there were ways to try and slow the progression. Dr. Williams started with a treatment plan that included a prescription for Aricept. He also gave us contact information for Beth Morgan at the local chapter of the Alzheimer’s Association. They held caregiver classes weekly at various locations around town. Dr. Williams couldn’t emphasize enough the importance of attending at least one of the caregiver classes.
We took all the information, Lori saying she would get everything organized for Me-maw and go over everything again with her in the morning.
On the way home, after dropping Me-maw and Pepaw off at their house, Lori and I looked at each other and, with tears running down Lori’s face, she asked, “How is this going to work? They are going to need our help now more than ever and they are such independent private people.”
“We just need to take it all one day at a time. I will call first thing in the morning on the caregiver classes.” I said.
The Alzheimer’s class was packed full of good information. So much so, it seemed easy to be overwhelmed. So, for me, I distilled it down to a couple of basic truths that I would etch into my mind. The first, was the fact that Pepaw’s progression in the disease would be like his mind being slowly erased backwards. I focused on the fact that he would find himself in different places, different realities, and that it would prove futile and counterproductive to challenge those realities. They were, after all, his reality. We learned that he may become combative or distressed in those instances, so better to “deflect” and “go with the flow.” These phrases I would repeat over and over in my mind in the coming weeks and months. There was a learning curve, for sure, on how to make these caregiving strategies work. Some days, they worked like a charm and on other days, they didn’t. The ability to make the strategies work changed with greater frequency as the disease progressed and overcoming the ever-changing learning curve proved difficult.
Life and care for Pepaw seemed to go well until it didn’t. Me-maw kept up a good front and insisted on taking on the brunt of the care herself. As problematic events started to happen, Pepaw walking around in the middle of the night, claiming people were outside the house, and beginning to not recognize Me-maw, she gradually started to let us in to do more, but the stress must have been overwhelming for her.
We had locks added to keep him from trying to go down the dark and narrow basement stairs, and when he disappeared one night in his pajamas, and was found a few miles up the road sitting in his pick-up truck in a field, we took the needed steps to insure he was unable to access his truck or leave the house alone.
Pepaw was doing well with his appointments, sometimes was cognizant of what was going on with his disease, and both he and Me-maw had finally agreed that Lori and I would take Pepaw for visits to our house or around town, to give Me-maw a break.
Me-maw had even agreed to think about having Pepaw start a day program, to give her time to decompress from the stress of caregiving. Based on the time we were spending, we could only imagine the strain on her, and we did the best we could to mitigate it, but Alzheimer’s is a family disease, ultimately affecting everyone.
I was at work when the call came through from our front desk.
“Mr. Jeff Campbell?”
“Married to Lori Lewis?”
“This is the Spotsylvania County Sherriff’s office. There has been an incident at 10408 North Lane, and you need to go there now please.”
“What is it? What’s happened!?”
“I do not have any details, I can only tell you that they request that you go there now.”
A thousand thoughts rushed through my mind. I began sweating and feeling sickly dizzy as I drove. Deep breaths helped me regain focus.
When I arrived, there was a police car, ambulance, and firetruck there. I assumed the worst about Pepaw.
I rushed through the door and saw Lori at the table talking to Pepaw. I didn’t see Me-maw.
Lori had not been able to reach Me-maw that morning, so had driven over to the house. Pepaw was confused, as his condition had been deteriorating, and wasn’t sure where “Gin” was. Lori found her, on the bathroom floor. As it turned out, she had died suddenly of a brain aneurysm.
This was devastating. Pepaw was deeply saddened but in and out of confusion, as sometimes, Me-maw was just a nice woman helping him out.
Virginia had given everything to care for Walter the best that she could, and it was now up to us to be his primary caregivers.
We tried alternatively, letting Pepaw live at our house and letting him stay at his house with one of us always there and taking turns spending the nights. It didn’t take long to abandon the attempts to have him live with us. It was too much of an environment change, even with him remembering less and less of exactly where he was. Even unfamiliar familiarity was more of a comfort to Pepaw.
He began living more of his life in different periods of his past, and his house became various locations that tested our abilities to go with the flow, assess where he was, and fit within his reality. We did our best to journey with Pepaw through his alternating past.
A Tense Day
There were early signs that Pepaw could be having an off day, that day. He was slightly agitated at breakfast, wanting to know who Lori was and “Where was Gin?”
I deflected his questions and told him that Gin was busy at the moment, and ignored his question about Lori, asking him if his breakfast was ok.
Breakfast consisted of eggs, over-easy and two slices of buttered toast. He didn’t care for any jelly that morning. Pepaw did eat well which I thought was good.
After breakfast, he seemed to be settling down and we went in for his shower. I laid out his towels and wash cloth, helped get him undressed, organized his clothes, and got the shower on and to the right temperature. I showed him his soap and wash cloth and he got in the shower, pulled the curtain closed all the way, and I waited outside the shower by the sink.
We talked about baseball and the Yankee’s 1962 World Series title. Pepaw said he loved watching Mickey Mantle and Roger Maris along with Yogi Berra and Whitey Ford on the mound.
“They sure had a good team and were fun to watch.”
“Who did they play in the series that year? I wasn’t watching much baseball then.” I realized right after I said it, that it probably wasn’t a good idea to ask him such questions, but he didn’t miss a beat.
“Well, it would have been the Giants that year, yes, it went through to game seven if I remember correctly.”
It was amazing how spot on his memory could be on certain things in the past, but, then too, I always remembered the mind erasing backwards description learned in our coping class.
Lori had to run to the store and head back to our house to take care of some things and I stayed for the day.
We sat for a while and talked about driving buses for Greyhound, which he had done for more than thirty years, some more about baseball, but I could sense him becoming fidgety.
Some time had passed, and he got up out of his black recliner and began to pace. He stopped and began looking out the window into the back yard.
“Who are those people out there?”
“I think they are back to finish up some utility work Pepaw, they should be done soon,” I said, knowing without looking there was no one there.
I began to tense up and hoped that I would be able to be in the right place and find the right mix of calming words. It was time to really focus on redirecting and “going with the flow.”
“Are you hungry, Pepaw?”
He turned and walked into the kitchen and stared into my eyes. “Who are those people out there?”
I responded quickly, not wanting to give any added cause for concern, “The utility workers, that have to finish their project. They should be done soon, are you hungry for lunch?”
He came closer to me. “Is that a gun in your pocket?”
“No, of course not, I have no gun, or any reason to carry one.”
He continued to stand right in front of me, looking into my eyes, assessing who exactly I was maybe.
“Is that the way you are going to play it?” He snapped back.
I felt I must have been turning white as a ghost and my hands began feeling clammy.
I took a step back and simply said, “I am sure getting hungry, how about you Pepaw?”
He broke his stare after what felt like an eternity, and said “Yes, I suppose I could eat a little something.”
I said a little prayer of thanks to myself, and got Pepaw settled at the table, while I made us some sandwiches.
I thought then, about another key thing we learned in the coping class. If a situation gets hard to manage, try and hang on, as many times, those moments would pass. In this case, that happened just in time. It was one of the most stressful moments I had experienced, as I could not tell where he was or who he thought I was. I never did figure that out.
Lori retuned later at around sundown, and with the day already being tense, worried how Pepaw would be as it got dark.
The only incident on that evening, was Pepaw, sitting in his chair, tearing up, looking distantly at the floor.
“What’s the matter Pepaw?” Lori asked.
Pepaw looked up slowly, “We never wanted to have to hurt any of those people, we were just doing our jobs, and I guess, they were just doing theirs. It was a bad time for everyone, trying to do our jobs and staying alive.” It was an amazing view into the thoughts of someone that experienced World War II and never would talk about it. The memory of that evening, and the tense day that preceded it, is one of the many, in caring for Pepaw, that is etched in the fabric of my heart and soul.
The Jersey Run
The night that night was like many other nights before and after it, that I spent at Walter’s house. During the bedtime routine, I helped him change into his pajamas, got his bed ready, and told him where I would be if he needed anything.
“Good night Pepaw.”
I walked down the long narrow hallway of his rambler, from the end front bedroom to the living room area, carefully avoiding the squeaky spot in the hardwood floor. As usual, I left one light on in the kitchen, to provide enough light to see without preventing me from sleeping when I could. I sat down in the chair facing the couch where I slept when I was there for the night. I sat silent, listening. Pepaw usually got up a few times before he settled down to sleep. I thought about Pepaw, what he was going through, thought about the night to come, and tomorrow. I stopped thinking about tomorrow, too far in advance. At night, a few hours at a time, was enough to think about.
Some time had passed, and I heard him start down the hall. I got up and asked if everything was ok. He stopped and said, “Paul, who is taking the Jersey run? Am I up?”
“No, Walter, I have it, you can catch some sleep now.”
He turned and headed back into his room. I heard him get back into bed. I had surmised early on that Paul was a fellow driver for Greyhound, where Pepaw had driven for so many years. The Jersey run must have been a routine route through New Jersey, from where, I wasn’t exactly sure, but didn’t want to question that since it was a route that I, “Paul” already knew.
Many nights, he would be back up before he settled down to sleep, but not on this night. After another hour of sitting and listening, I moved over to the couch and tried to get comfortable. I don’t remember exactly when I fell to sleep, but I awoke at about 2:30am, listened, and heard Pepaw shuffling down the hall. He tended to do that more and more, especially at night, shuffling his feet without really lifting them much.
I arose quickly, turned another softer light on, and turned into the hallway.
“Hey Walter, I am getting ready for the Jersey run, you head on back and get some sleep, ok?”
“Are you sure I am not up on that?”
“Yes, I am sure.”
He paused, studying my face.
“Ok, take it easy up there.”
“I will, thanks. Get some sleep.”
“Thanks, I will try.”
Pepaw, shuffled back to his bedroom and was settled in for the remainder of the night. I sat back in the chair for another half an hour before returning to the couch to try and get as much sleep as possible before morning.
There were a number of variations of that night that played out over the months, but I was always Paul and the conversations always involved driving a bus and making sure Walter knew it wasn’t his shift. I eventually began to feel like I actually knew the Jersey run.
A Final Moment of Clarity
Eventually, as we had been told it could, Pepaw’s physical health started failing at a pace that was catching up with his memory loss. He had developed pneumonia and was hospitalized. He was unconscious, and we worried what he would think when he awoke being in the hospital, wondering if he would know where he was. We were starting to give up any hope at this point that Pepaw would achieve clarity again and fully know who we were, even if he regained consciousness.
As we sensed that Pepaw was drawing near to his earthly finish-line, we sat with him daily, awaiting some change for the better, we hoped.
On a morning, that could begin another day of unconsciousness, we parked the car and half ran across the parking lot and through the automatic doors of the hospital. Lori wanted to be there as early as possible in case there was some change, that we didn’t yet know or receive a call about. I hit the up button at the elevator several times as if that was going to speed things up and make everything all right. As the doors were opening, we squeezed sideways through them and moved quickly down the hall to room 1009. We didn’t wait to try and catch a nurse for an update on his condition. The door was closed. Lori hesitated, and then opened it slowly peering in.
“Hey Lori, come on in.” said Pepaw.
Lori walked on in, saying excitedly “Pepaw, do you know who I am?”
I followed in behind her.
“Of course I do, silly.”
Then looking over at me, “Hi Jeff.”
Then back to Lori, “So, what am I doing here?”
“You have pneumonia, Pepaw, so you have to stay in the hospital for a while.”
“Spell it.” was Pepaw’s response which gave us all a good laugh, and a forever treasured moment of complete clarity.
It was to be his last, unfortunately. By mid-afternoon, he was sliding back, thinking Lori was different relatives, at different points during the afternoon, and as time wore on, someone we had never heard of.
Pepaw developed sepsis and slipped into unconsciousness. For a couple of days, he was fitful, and seemed constantly restless, even in his unconscious state. The doctors gave the “just a matter of time” call and on the day he passed, I stopped by in the morning, early, as Lori was heading over to the hospital. He was still unconscious, but seemed to be resting, so peacefully, ready for his journey ahead. He left us that day, and we took comfort knowing, he was whole again.
Epilogue: Meeting Myself
We found out some interesting things at Pepaw’s service. First, many of his long-time neighbors never knew he served in the Marine Corp or fought in World War II. One of those generational things I guess, where they just didn’t bring it up with others. Second, we found out that almost all Greyhound bus drivers like to drive big pick-up trucks as Pepaw always had driven his Ford F-250. One older gentleman drove up in his large Chevy crew cab and parked in the back of the lot away from everyone else. As he climbed down from the cab, I could see he looked to be in his eighties, small in stature, gray thin hair. When he walked up to me, he extended his hand and said, “Hello, my name is Paul. I used to drive for Greyhound with Walter.”
Thinking back on it all now, it may seem strange to say, but helping to care for someone with Alzheimer’s was an honor for me. It taught me that a disease can erase a mind, but it can never erase a soul, and, that even during their darkest times, they are a lighthouse on the shoreline of humanity.