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Caregiving Reality

The Face of an Epidemic

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Less than a year separated us in age. We had grown up only a town apart, never crossing paths until this moment. Both thirty-five, yet I felt the gulf yawning between our pasts in the small space of now. Introductions always feel a bit awkward, but this one a little more than most. I was going to care for him, and I had never cared for someone this young.

His name is Tom(*) and he has seen a lifetime of trauma in a life only half lived. His father was a military man, and perhaps that in part inspired Tom to join. Maybe he had a hunger for adventure. Whatever his reasons, his choice led him to Afghanistan, and then Iraq. Two tours as an army medic–two dusty, dirt-filled wars. He returned with more memories then a head could hold, and more hurt than a heart could take. A few short years after his discharge the ghosts caught up with him and he overdosed on drugs.

The opioid epidemic is all over today’s news, but this plague of bad choices and toxic chemicals has been cutting people down long before it made recent headlines. Drugs took Tom to the edge of death in 2011. He came back from his coma a changed man, physically broken and mentally scoured. Life would never be the same again.

Tom once had a wife, but she is gone. The two daughters visit occasionally. Their names are tattooed on his forearms. He lives with his mother, a woman in her eighties. Once a man who carried a pack and climbed distant mountains and valleys while caring for his comrades, he can’t even dress himself now.

Today Tom and his mother have an apartment in the basement of his brother’s house, up a winding road out in the country. It is a simple and quiet life, without extravagance. “I’m poor, I’m poor,” he would sometimes say, in an almost sing-song voice when I pushed him in a wheelchair for a walk down the street. Most of the time he acted slightly proud of his poverty–as if his self-declarations were a badge of honor–but it did irritate him that he couldn’t pave the driveway so that it wouldn’t be muddy and make it hard to push the wheelchair in bad weather. Then Tom said he didn’t care if it cost a million dollars.

Physically, Tom has lost nearly all of his fine motor ability. His hands and feet are contorted and his limbs jerk in movement. Tremors sometimes shake his legs. A medicine pump is installed under the skin in his stomach, the bulky machine releasing a steady dose of chemicals to keep his misfiring neurons under control. A bit of irony there–chemicals broke him, and now are what keep him semi-functional. He can’t walk, can’t sit up unsupported, and can’t even write.

The Veteran’s Administration had provided much for Tom’s care, but when the local home health agency contracted for his care had gone out of business there was no other certified agency around to provide assistance. This is one of the problems that comes with living in the backwoods of upstate New York. The agency closure meant Tom was without his morning weekday care, and it was for this I was asked to step in and help.

I was told that doctors rated Tom as retaining the mental abilities of a 12-year-old. As I grew to know him, I found this analysis both fairly accurate in some respects and utterly wrong in others. Mental damage doesn’t fit into the neat categories of age brackets. Though such terms are convenient short-hand to described the impaired, the language also perpetuates a terrible injustice against the reality. An elderly person with dementia does not merely regress to the state of a child, nor is it accurate to describe an autistic person as stuck at a less than fully developed condition. The mental state of people with either condition is something other than the norm, but neither can be accurately described by some assigned age bracket comparative to their mental abilities. This was true for Tom. In some areas he lacked mental abilities that came easily to a 12-year-old; in other respects he retained what no 12-year-old possesses.

What remained of Tom’s memories was the greatest mystery, and in the time I worked with him that was a secret I would only begin to plumb.

Photo by Jacob Meyer on Unsplash

“I am my own man,” Tom said vehemently. The occasion for this statement was a dialogue we engaged in regarding whether he should be shaved that day or not. The truth of the statement–that battle cry–fit his entire existence. He was what he was, and he wanted to be what he wanted to be. His mental and physical incapacitates were like a shadow of dementia, his fixations and social infirmities manifested like an echo of autism, but he was all himself and not a category. He lived totally in the present, had no social tact, no subtlety or nuance. Everything was black or white. Interesting or boring. Good or bad. Stupid or smart (though most things were stupid in his book). And he loved The Price is Right. In it all he was his own man.

“What is your name? How old are you?” These were the first two questions Tom asked anyone he met. From there it could grow to where you lived, how to get there, what you did, if you were married, your wife’s name–and that was the normal limit for personal inquiry. Facts were of interest to him–the basic facts–and that was enough. The fact that I was the same age as Tom delighted him. “Same age,” he would reflect in his stilted voice. The conversation happened more than once every day. And then each time he would add “One year older. One year older.” Accuracy was very important to him and I was ten months older. To which I would agree, yes, I was one year older. It was important to Tom that his conversation be acknowledged so that he knew he was understood.

The man he had been came out in strange places and in odd little ways. Often he talked as one who knew nothing but the small and almost child-like world of his present existence, but then there were the flashes of something else. One morning as I washed him in bed he asked me in his garbled way if I had any children and I told him I had one on the way. He visibly brightened and asked, “Boy or girl?” and I said boy, to which he replied, “Good job, Rundy! Good job!” in an effusiveness that suggested the ribald man that had once been, and still lurked there.

Our morning routine consisted in me arriving promptly at 8AM, when I would wash him up, dress him, hoist him out of bed with a lift and place him in his special wheelchair. After breakfast, shaving, and teeth cleaning I would take him on a half hour walk on the country road. Afterward I would read to him for about an hour, and then it would be time to watch The Price Is Right until lunch. The Price is Right was the high point of his day, but the story reading was a very close second. With time he came to look forward to the reading so much that he would ask about it as soon as I showed up. “Story?” And I would say, “Yes, Tom, we will do the reading after we go on the walk,” and he would respond. “Good. That’s good.”

Tom was interested in the immediate world around him, and anything that touched that world. He was interested in how to get to my house, and he thought the cars and trucks on the road were very interesting. A regular occupation was trying to guess the make and model of each vehicle before they passed. He enjoyed any discussion of the birds in the vicinity, and was glad to learn their differences and imitate their calls when he could. The weather was also a ready topic, particularly whether it was making him hot or cold, and generally anything else observable was good for conversation. His attention could not be held by conversation about larger ideas and abstract concerns. The world might be going to hell in a hand basket, but that did not pertain to him. Whether mom was back from the grocery store–that was a matter of considerable importance.

So we talked in our fashion. Which meant I did most of the talking and Tom gave his stilted and sometimes garbled replies. If I tired of serious conversation (which I often did) I would revert to teasing him or telling jokes. Once or twice I may have tweaked him, but he mostly found me hilarious. If he complained that it was cold I might tell him he was in danger of dying, to which he would then heatedly insist that he was tough and had survived far worse (cue story about how cold it was in basic training). Once when he complained about the weather I said something to the effect that if we couldn’t make it home I would have to eat him to survive. He laughed gleefully in his stuttering sort of way and told me I was demented. He was very satisfied with his pronouncement.

The drug’s fire had burned much away, but what remained was not all broken in ugliness. The damaged man is a cliche of our culture, bitter and resentful in his brokenness. But Tom was a content man, most of the time. Yes, his itches would drive him crazy and he hated it when people couldn’t understand his stilted and slurred words, but he expressed his love with the openness of a child and had what seemed an almost serene peace with his lot in life. Whatever burdens he had carried out from the war, he lost them in his drug ravaged coma. He came back from beyond the mists unable to walk, but free from the monsters which had hounded his path. The life he had been given back was simple, and all he could remember now need not be forgotten.

More remained in Tom’s mind than I had first thought. I detected hints, but I wondered what hid behind Tom’s hurried words and simple contentment. From my experience with dementia I knew that everyone who has suffered mental impairment retains far more than can be easily expressed by the disabled or initially grasped by an outsider. I wondered what Tom still possessed but which he could not easily share. With time I caught glimpses.

Two truths I discovered as I cared for Tom. First, Tom had lost much of his memory from the time of his deployment. He returned regularly to his story about how cold it had been in basic training–it came up every time I took him for a walk in the cool early autumn mornings–but he could only remember having flown in an airplane once, to basic training. He remembered no flights to or from Afghanistan or Iraq. He insisted he had only flown once–an impossibility for someone who served in both wars. He remembered having been a medic in the army, and some aspects of his training, but in conversation he displayed no retained memory of the trauma or the loss of caring for men out on the field of war. And yet, mysteriously, there were some memories in there–a kind of knowing that clung deeper than he could readily share.

The second truth–related to the first–was that Tom could seem simple, but he was nowhere so simple as he seemed.

I touched on these truths in a way I did not expect. It came through the sharing of stories.

The first books I read to him were the volumes of the Westmark Trilogy, an old classic YA series by Lloyd Alexander. I wasn’t sure at first how much Tom would be able to follow, but as books full of adventure and daring I thought it a good place to try. After we began it became clear he greatly enjoyed the series. Exactly how much he understood I can’t say. I think sometimes his mind wandered, but other times he was paying more attention than I realized.

Lloyd Alexander wrote the Westmark Trilogy in part to exorcise the demons he carried from WWII. As a result the trilogy is darker than most contemporary YA series written in the early 1980s. Tom enjoyed the adventure and danger and excitement of the stories, but then events took a grim turn in the second book. Two scavenger children–Sparrow and Weasel–witness a mob kill a man by impaling him with a pitchfork. In the story this was very traumatic for both children, but particularly for the young boy, Weasel. Tom listened without any noticeable reaction to this part of the story so I wasn’t entirely sure how much he had understood the events.

Then the next chapter began and I read: “Soon after they had witnessed the burning of the great house, he had fallen sick; Sparrow could not imagine what ailed him. He seemed feverish, yet his brow did not feel hot or even especially warm to her touch. […] Weasel, despite the comfortable nest Sparrow made for him in the underbrush, tossed fitfully and slept little; when he did sleep, he whimpered and yelled and ended by waking himself up.”

“PTSD.” Tom spoke abruptly, interrupting me. “PTSD,” he repeated.

“Yeah,” I agreed. I stopped reading, surprised. It would have been an astute observation for anyone to make but for Tom to listen to the story and draw the connection for himself said volumes. He lived a simple life now and his days seemed untroubled. But even so, when he heard the story of a boy who saw horrors and how they troubled him, Tom understood and named the nightmare.

You know that boy, Tom. And you know his nightmares.

Photo by Jeremy Bishop on Unsplash


The opioid epidemic is real and its toll is incalculable, but my plea is that we don’t get lost in the statistics. Each person who has been struck down–and every family that must deal with the result–is unique. Each has their own path which brought them to the dark place of addiction and its ugly consequences. They each have their own stories, and they need to be heard. See them, and hear them.


(*) Not his real name.

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