An Old Lion Roars at Dementia

By J. Stewart Schneider J.D.

There is no more precious experience than a human life with all its sharp elbows and soft spots. Yet when one's life is complete, we satisfy ourselves with a simple gravestone noting name and dates. Nothing about that life's struggles nor yet its celebrations, nothing of guidance to the coming generation. This book, not an autobiography, represents the memories and thoughts of a senior man diagnosed with vascular dementia.

Dementia stirs up thoughts of nursing homes and residents staring blankly at the wall. It may come to that for me, but it hasn't yet, and this book marks my last chance to roar at the disease, which daily robs me of talents and memories. May it guide you as well.

• Language: English
• Publisher: Newman Springs Publishing, Inc.
• Release date: Aug 31, 2022
• ISBN: 9798887630953

Book preview

Here’s Why

During my long life, I have been a successful politician, an unsuccessful politician, a police dispatcher, a cop, a radio host, a felony prosecutor, a published technical writer, a computer programmer, a performance musician, and recording artist, a Christian minister, and at various times, a bread truck driver and a door-to-door salesman. For the past fifteen years, I’ve served a Presbyterian Church as their stated supply speaker although I am not a Presbyterian. (My ministerial credentials are with the Christian Church, Disciples of Christ.) That’s a lot.

Most recently, I have been diagnosed with vascular dementia, described as:

Dementia caused by problems in the supply of blood to the brain, typically a series of minor strokes, leading to worsening cognitive abilities, the decline occurring step by step.

The literature continues, dryly, to state:

People with vascular dementia present with progressive cognitive impairment, frequently step-wise, after multiple cerebrovascular events (strokes). Some people may appear to improve between events and decline after further silent strokes. A rapidly deteriorating condition may lead to death from a stroke, heart disease, or infection.

Finally, we are told that the prognosis is poor.

We arrive in this world as a blank slate. Gradually, very gradually, we come to perceive our wider world, beginning with our immediate surroundings. Searching for a metaphor, I struck on a Ferris wheel. One enters the Ferris wheel at its lowest point, a perspective from which only the nearest and clearest things about the environment can be seen. Then, with no effort, the wheel begins to rotate, drawing us backward and upward. We cannot see where we are going, only where we have been, and we have no idea of the force which is driving us in so singular a fashion.

Nonetheless, we rise higher, and as we do so, our range of perception increases. Now we see over the tops of buildings. We can scan the horizon. We begin to see the connections which knit our world into a whole, the streets and the electric wires, other people strolling, people previously unknown to us. As we move ever higher into the unknown, we are positioned to see more of our world until at last, we reach the very top where the wheel stops, leaving us rocking gently, surveying the entirety of the world available to us. From here, we are masters of all which is granted to us. From here, all mysteries open to us are revealed and we revel in the glory of it all.

But such elation does not last. The wheel begins again its slow rotation so that we are forced to observe our decline as the world and its connections slowly slip from our grasp. Inevitably, we will return to the point of loss of perception, loss of understanding, again the state of helplessness from which we began. It’s well and good to counsel me to enjoy the view while I have it, but the inevitability of this loss of autonomy preys upon me. Young lions roar to announce their presence and to boast of their power. Old lions roar from nostalgia and awareness of their loss of power. This little book represents my reflections on what I have seen as I look back on it from my current, more enfeebled state as well as my thoughts on the world I now inhabit illuminated by the world as I remember it.

When I ask why I would do such a thing as to write a book, my mind brings up thoughts of my father’s coffin. In my mind’s eye, Dad’s coffin has been stuffed with paper, each sheet representing a success or a failure, a distressing moment or a celebratory one. Things that bothered Dad were carefully noted as were those joys he experienced. His time in the Philippines during World War II was thoroughly documented as was his joyous return to the States. All of it, the good, the bad, and the ugly, was stuffed tightly into his coffin, then the lid was screwed on tight. None of it would ever again trouble a living soul once Dad and his memories were filed away beneath the sod, but none of it would ever again be celebrated, either. Like the genealogical studies I dabble in, each life is reduced to name, date of birth, date of death. What a heresy to something so precious as a human life! We insist that Dad’s experiences were enough for one lifetime but insufficient for anything more, so they should lie undisturbed and unacknowledged. And yet…

What a gift a human life is. What a messy, happy, chaotic thing! The elation! The sorrow of loss! The errors from which he learned! It is a treasury beyond price, yet at its end, we file it all away and reduce that life to only a name and the space of time during which the adventure played out.

John Franklin Schneider

February 23, 1917

October 23, 2006

Can we not do better? Can we not find a way to treasure the inestimable adventure that is a human life? Hence, this book. I will roar, and perhaps the sound of it will speak to the future of my children.

When I was a young man, I walked a mental path of smooth macadam with few, if any, tripping hazards. I didn’t stride, for I have never been that confident, but I walked upright, admiring my surroundings. Every thought which entered my consciousness brought with it a legion of other connected memories so that my mental environment was a place of wondrous variety.

Then came age and vascular dementia. Now, my mental environment is sparse, emptier, and unremarkable. No more does one thought summon others. No more am I reminded of pleasanter times by some passing vision. If I am to speak, I must speak now.

What I wish is that inner peace could be summoned by an act of will, yet I have not the talent. The best that I can do is to find compromise between the forces to which I am in thrall and my world as I remember it. I will make those compromises, but I will also embrace my anger! I will not go quietly into that good night. I will roar!

A Bird on the Wire

I took the garbage out after supper. As I returned to the front porch, I heard birdsong and thought I might sit and listen. I don’t have the first idea why I did that. Birds don’t interest me and neither does birdsong, but this little guy was making himself known. I think it was a robin, but he was too far away to be sure. There he sat, on my electric wire, singing his heart out. I relaxed into the chair and just listened, feeling kinship with him.

Any ornithologist would tell me that he was announcing his availability to any lonely females in the area, but there were plainly none about. There were two male cardinals who were performing aerial acrobatics of eye-popping complexity, but they were doing so silently. It was not for them that the robin sang. Nor was it for me. Ornithologists or no ornithologists, it is my belief that he sang to announce his presence to the world: Here I am, in my weakness and my strength, in my short life, I am here.

Do we not all, from time to time, need to announce ourselves? Is not life itself an ongoing conversation?

The Lady

I didn’t see her until I’d closed the door behind me, but she saw me. She paused from nibbling on my grass and looked warily over her shoulder as I emerged from the house.

I understood our conversation immediately. I kept my eyes down, only glancing up briefly. She seemed to understand my gesture. She kept her lovely eyes on me but flew no flag, watching as I walked to my car (which meant that I actually walked toward her), but still without focusing on her. It was satisfactory to her. I put forth no threatening signals.

In great silence and calm, she watched me approach and open the door to my car. She was still chewing a bit of my lawn as she watched what I was doing with apparent interest.

I closed the car door as quietly as I could, then turned my back on her and retreated to the house, again careful not to look directly at her. Once inside, I closed the door and only then did I look through the sidelight at her. She tossed her head formally and returned to her browsing.

Sometimes, there are meetings like this where nothing is said but all is understood.

Lost in a Hospital

The closest I could come to describing the experience of living with vascular dementia presented itself in a phone call from an old acquaintance. We were returning from our anniversary trip to Lexington. My acquaintance said he had had a heart attack and had been released by Kings Daughters, but that he was still having chest pain and wanted us to drive him to Cabell-Huntington. We couldn’t, of course, but as soon as we got home, I called him back. By then, he was in Cabell-Huntington’s ER. He begged me to come talk to him, and I headed to Huntington.

Cabell-Huntington is constructed on the plan of an anthill—that is, there is no discernible plan at all to the layout of parking lots and doors. After many wrong turns, I found a large sign marked Emergency with a prominent arrow pointing right. I parked and started walking that way only to run into construction and a fence. I saw a door at the foot of some steps and went in. The door led to a corridor. That corridor led to another, and that to another. By then, I had no idea where I was in relation to the emergency room. I found someone to ask and eventually, many doors and corridors later, arrived at the ER.

After my time with my friend, I tried to retrace my steps. This is the point at which being lost in a hospital begins to mirror life with vascular dementia. All the corridors look the same. A few Exit signs led me to doors marked, Emergency staff only or Do not open or siren will sound. In no time, I was hopelessly lost. Worse than that, I was disoriented. The experience mirrored a recurring nightmare I have in which I am on a familiar road which then becomes stranger and stranger. The longer I drive, the more lost I become. The corridors of Cabell-Huntington were replaying my nightmare exactly.

This is familiar to anyone who has ever gotten lost in a modern hospital, but I must view all such events through the lens of my diagnosis. Am I just lost as intended by the demonic architects who planned this nightmare, or have I had another clot, killing yet more of my brain? The more I walked, the more lost I became and the more the tears welled up, threatening to streak down my cheeks.

Somehow, I got outside. The only strategy I could imagine was to circle the hospital and hope to spot my little car. I started up the Emergency ramp. Not even halfway up, my knees and my back began to remind me that a seventy-five-year-old man has no business asking them to do such a thing. Finally, the pain was so great that I sat on a guard rail, breathing heavily, head down. That’s when I saw a security guard headed my way, masked, armed, and wearing a bullet-proof vest.

The young man asked if I was all right and I answered truthfully that I was not. One part of my mind seemed to still be functioning and what it perceived was an elderly dementia patient, obviously confused and in distress. That was my awakening, for that is just what I was. I held back the tears of fear and frustration with difficulty as I explained to the young man that I couldn’t find my car.

The young man helped me back to the ER and got a wheelchair for me. When I was seated, he asked me questions about where my car might be, where I had entered the hospital, any landmarks I might recall. I couldn’t answer any. My memory was gone. How had I entered the hospital? I did not know.

What happened next still takes my breath away. The officer began to push my wheelchair out of the ER and embarked on a tour of all the parking lots in the full heat of August. He even engaged another officer to help locate my little Nissan! He wheeled my dead weight around until we found my car. Well, that’s to say he found my car. I didn’t recognize it at first.

If my experience in the wheelchair represents my life as this disease progresses, I am frightened, but the actions of this young officer in the deadly heat of August strengthens me. In these frankly awful times, it is still possible for one person to reach out to another, even at cost to himself, to ease suffering and offer comfort.

And so, as I rose to get in my car, the young man asked my name. He smiled and removed his mask.

Did you attend First Christian Church in Ashland? he asked.

My jaw dropped open. The kind man was a childhood church friend of our daughter. It is a small world we inhabit, is it not?

Living Outside the Monkey Bars

The playground at Oakview Grade School featured two ranks of swings, two of teeter-totters, and one monkey bar. This last was a marvel of iron pipe, roughly hexagonal in shape, each bar separated from the one above it by exactly the same distance, and all closed by a cupola supported by curved bars. Within the monkey bars, a child lived in a world of regularity. Climbing on the monkey bars was as predictable as the fall of the rain, each bar precisely where it was supposed to be, predictable and secure. I cannot adequately express the confidence generated by this venerable piece of playground equipment.

My disease has brought into awareness something I had not noticed before. We live within a web of connected memories and concepts, as interlinked as were the bars of the monkey bars. To think of Saturdays at the Capitol Theater brings to mind not only memories of the Capitol but also thoughts of my grandfather or Saturdays during grade school with a day ahead of me filled with no obligations. I simply could not catalog the extent of this interconnected web for each such memory is also connected with its communicating notions, like an infinite monkey bar, secure in its predictability.

With dementia, those connections are broken, and the web falls to pieces like a spider’s web in a windstorm. At a breeze, I am swept from the comfort of the center of the monkey bars to an exposed place where I am alone. It is horrible. It is frightening.

Those to whom I have shared this have offered me compassion and I am so grateful for that caring, but that doesn’t reduce the certainty that these spells are but foretastes of my life going forward. It makes me morose, and I ask your forgiveness. I’m not seeking a pity party; I am only explaining how very challenging this new reality is to me. It will take some adjustment.

Treasuring Dead Ends

Mentally, we live within a web of connected memories and sensations. Memories are the ballast beneath my keel, but I’m losing my ballast because of multiple infarcts. Any portion of my brain which has died for lack of oxygen is called an infarct. The multiple infarcts in my brain mean that if a memory I seek should lie on the far side of such a roadblock, it is inaccessible unless a way can be found around it. The infarct marks a dead end. Sometimes, my brain can find an alternative route; other times, not.

My busy brain