I post this with some hesitation. It is something from out of my archives that I wrote over two years after my Dad died from Parkinson’s Disease; in the twenty-something years since I have passed it around to only a very few. But I realized that if you truly want a glimpse into the life of an author– or at least this author– then this is a significant part of it, as it was during those dreadful Parkinson's Years that I began to write. It's a bit of a read, at 8500 words, and have a tissue handy.
I have not edited it since, nor am I likely to, as it is all I can do to page through it without my eyes getting wet. It is my account of what my Dad went through with this terrible affliction, a perspective of events from the point of view of a caretaker and family member. As such, it is rather personal but something that needs to be read. So, I present it, as is, for all readers to consider.
*****
Dedicated to William P. Tierno
It started with a hand tremor.
Some background first. My father was from a family where having a job meant you usually had your own business or at least knew well how to fend for yourself. He'd done some of that himself before leaving the clan to come out to California. Disagreements with his father and family led him out there and made of him a very stubborn man. He would make a decision and not even an earthquake could move him. It made him both a stern disciplinarian as a father and one not prone to showing weakness or emotion in front of his family... or much of anyone else, for that matter.
As a kid he'd gotten hit by a truck, then the next year did an encore with a car. Between the two of them he'd spent many long months in a hospital hooked up to needles and tubes while they sewed parts of his leg back together. A good enough reason to gain a dislike for needles and hospitals. But he never really talked about this part, this dislike of needles and hospitals; like I said, you don't show weakness to your family, especially your kids.
Did the "disease" start with those long-ago accidents? Possibly. Or it could have been the time when we were waiting to go to Disneyland. Not everyone was ready yet, so he decided to pass time with my sister's skateboard. He'd done a few turns on it before in his bare feet- having been a quite good one with skates in younger years- but now he was wearing shoes; those stiff Italian-leather things. Not exactly the most flexible nor with much of any traction. He ended up slipping and falling backwards on our cement sidewalk. Right onto the back of his head.
Time to rush him to Emergency, you say? No; remember him and hospitals. Instead, my mother fearfully helped him up and walked him over to the swing to rest it out. Was he injured? Hurt? She didn't know, he just sat there wordless and unmoving. He should be looked at, an X-ray maybe, but that would be hospitals again. Minutes passed, still nothing said, and then... He got up and said we're going to Disneyland.
He would neither show weakness nor disappoint his family. He'd said we were going and that was that, no matter a little fall. But it was soon after that that we come to the shaking hand.
Just an uncontrolled tremor at first, a curiosity the doctors at first didn't know what to make of. By this time he was selling furniture, but that was not all of himself. He'd picked up the making of some pieces as well; the playhouse out back we'd used, some cabinets around the house, a few shelves, and greatest of all the hutch. Growing up, I'd just taken it as a given that dads built things, whatever was needed. That it came with the title. Then there was his singing; between church choir and barbershop, he loved to sing. Never one for really exercising, he had to be doing something. When not working long hours he would find a project, something around the house that needed to be done, fixed, or built. Hands and voice, that's what he used a lot of. Though he did also love watching cartoons, Bugs seeming to be his favorite. Those and Westerns.
A couple doctors later and the tremor had spread up his arm. His long-time personal doctor then finally identified what it was when watching him walk; a slight drag of the foot. Some condition known as Parkinson's Disease.
I didn't know what it was or how it came to be, but then from what I understand that puts me in the company of most of the professional doctors out there. It was a name and a curious tremor, nothing much more; at least not that the parents were yet willing to tell the kids.
It progressed slow at first; I was in high school when it had started and had school to worry about, and soon college. Other doctors were seen, medications looked into. I suggested acupuncture and then something new called electro-puncture. Sounded like it might work but then there were those needles again. Electro-pressure maybe? No, still too close to hospital stuff.
He went into physical therapy, joining a health club for a short time when I was seventeen. That didn't last long, more for the fact of a badly managed establishment. His arm was shaking now but he was still able to walk and live normally enough. After the health club there was a more medically-based physical therapy and that actually lasted for a few years. At least until they heard the word "Parkinson's", then they couldn't get him out of there fast enough.
The shaking arm evolved by degrees into a slight stumble to his step, tripping over things not there. His father, my grandfather, had told him he'd never walk again, that this disease would get the better of him.
Did I mention he was stubborn? Italian blood and Taurus the Bull make for rather fixed determinations. He would fight this out of sheer will power if needed.
He'd walk long distances. When driving to work became too hazardous for one with a shaking arm my mother would drop him off in the morning, then he'd try walking back home when he got off. Not a near distance but he'd still manage to get pretty far before she met up with him. Determined and stubborn, fighting it all the way.
It didn't seem so bad then. Some tremors making the way across his body with my dad fighting it all the way and even making jokes of it. Turns out he had a sense of humor; who knew? But then he began tripping at work, falling down and scratching the display furniture as he flailed for support on the way down. Starting to cost the store some concern, but they would bear with it. He was one of their best salesmen after all. Those plaques they give you for selling over a hundred thousand dollars worth of furniture in a year? He had one... for each of several years in a row. We still have a stack of the things.
But the stumbling became worse, so when new management took over they suggested he take a vacation. They didn't know from Parkinson's, just thought it was stress. Take a break and come back later. But we knew better. He was still the bread-winner though, and I was nearly through college, or at least my first bout of it. According to Social Security he had to make it to age 59 and a half before he could start getting benefits, so he kept on going for just a bit longer so there'd be enough money for his eldest to finish school and food to keep coming in. The appointed age came and then that vacation, and my parents decided to turn the break into something more permanent. The company was on the rocks anyway. He retired.
But getting money out of social security was not easy. They based their figures on his last year's earnings, and since he'd spent more time falling over furniture then selling it this was not what it used to be for even just the previous year. So, my mother went down to the Social Security office in person, carrying that stack of plaques and a few angry words. We got the cash.
Still a fixed income, though. My sister had long since moved out once she'd turned seventeen but the shy schoolboy that I am, I had yet to find employment. Seems companies want you to have experience before they'll let you earn it and schooling doesn't make an ounce of difference. Of course I probably set the record by walking into eight Chapter Eleven's in a single day of job hunting. Amusing and perhaps a sign that the world didn't want me employed, but that doesn't bring in any money or help the self-image of someone with already terminally low self-esteem. My dad went from wondering when I was going to get employed to giving me "pep-talks" about it, though non too peppy.
The upshot of all this is, that we were poor. After years of cycling through one medication after another, all of them having only temporary effect, we'd settled on Senement and Artane. Those unwilled prat falls became more frequent and he had this amazing sense for grabbing onto the most unstable piece of furniture around to try and stop his fall with. A table nearby with a lot of junk on it would end up on the floor often enough until it was not anchored down. He takes a walk outside and manages to wait until asphalt to fall instead of all that grass we had. So many falls onto his knees that now they began to swell up; a lot. That stumbling gate became an exercise in trip and fall. I finally got the idea to get him some knee-pads, but those were more often forgotten or just ended up falling down around his ankles. Still, it helped and the five-inch globe of water and puss behind each knee subsided to a mere two or three inches.
He could not walk upright anymore, and the medications only helped to slow things. He developed a stutter, another manifestation of the "disease". Then there was the bladder control.
The first incident was in my parent's bed. He'd never wet the bed before but he did now. After cleaning up, it was decided that he would sleep in the den- the one he'd helped build along with the professional contractor those several years ago- and make his bed on the couch. At least until we could get a handle on this urination problem. His temporary residence would end up evolving into something more over time. The dining table became the place where his pills and later anything else he needed within reach were kept, one corner of the room began to fill with those adult diapers, and he was always moving the furniture around to get a better angle at viewing the television with.
But despite the stumbling and shaking hands, the increasing difficulty with speech that needed an interpreter, he was still determined to beat it. One day he pulled out some wood from the wood pile and took out his old drill and other tools and began to work. The intent was to build a shelf- no doubt for his many decades worth of National Geographic- but at the first hole drill it wasn't working. He ended up with a long plank of wood with a few random holes punched in it; a more disheartening thing this man could not have been through. He who had done so much with his hands would never build another thing again.
He refused the wheelchair at first, because that was for the old and infirm. Even when a friend of the family had given him one and another friend had gotten the local church to donate a second, he would not use one. He would walk to the coffee shop, stumbling along the way, or when we went to Disneyland with him and my mother for the last time that he would be there, it was my mother's arm that would support him, their last dance to have on one of the dance floors along main street.
Let me digress into his faith. A devout Catholic from way back, he would be at the local church every Sunday with his Missal that he'd have since before I was born. I think he'd read more from that Missal then actually listen to the priest, and I have mixed memories of him trying to roust me out of bed early on Sunday for the seven-thirty AM mass. You could not find someone more devout without getting into a cult or the over the edge born-again types. His two favorite things seemed to be church and barbershop singing.
We finally got him into a wheelchair, more at the instance of the local coffee shop then anything else. Even so, if he could get away with walking on his own power he would.
I'd have friends over and when my mother was out, he would try walking outside. You would then see me running across several yards of yard to catch him before he'd fall. Friends became more annoyed then sympathetic when I'd spend the time to straighten him up or help him back inside with the promise that my mom would walk him once she was back. More often he'd just sit down on a chair we'd finally gotten fixed up for him outside.
That brings up the other thing that was going on with him; facial muscles. As his stuttering and inability to form words properly increased, his array of possible facial expressions decreased. You would end up having to guess what he wanted, if he was happy or angry, and your friends would be uncomfortable with him just sitting and staring at them. But let's not get too far ahead of myself.
The wheelchair became common for public outings and some times for sitting outside. He still went to church and barbershop, Missal in hand for the first and trying to sing along at the second. His friends at barbershop ended up tolerating him; his singing was reduced to just mouthing with the occasional stuttered utterance. He'd been in this award-winning Chorus for about twenty years now, but the man in the wheelchair was proving more a nuisance then anything else. The day came when they asked that we keep him at home. Now he would never sing again.
No singing, no working with his hands. What was left?
We were with a meals on wheels program by that time, and I was in college again going for a second Bachelor's and then my Master's, so cash was very thin. I had a six-dollar savings account and a bad tooth which I decided to put off having filled because I knew we couldn't afford it. That medication he took cost a dollar a pill, which when taken four to six times a day really adds up, and low fixed incomes go a rather limited distance with that sort of thing. He could have had an operation years earlier which they say might have either helped or left him worse off, but that would mean a hospital and lots of needles again. The medication would slow his stumble but was proving less and less effective.
Except for the side effects of course. The doctor said that hallucinations were common with these meds and perfectly normal. Perfectly normal amounted to seeing people that weren't there, talking to wooden posts, seeing rats scurry across the floor when there never were any, and in general things that they usually give people other medications for. He was in a diaper a lot now, having tried and failed with a catheter, and the hated wheelchair was a grudging necessity.
Oh, and those diapers? I guess what finally prompted their more then occasional use was one day a friend was visiting and my dad was in his wheelchair just outside, dressed and ready to leave for somewhere. His face was slack because that was about his only expression then, and my friend was giving his greetings to my dad. That's when I saw the stream of urine out from the bottom of the wheelchair and quickly distracted my friend to another sight, putting myself in the way of the view. You couldn't even tell if my dad cared or noticed his own problem.
We ended up keeping a large cup next to his bed for the many nighttime needs, emptying it in the mornings.
He had a bed by now, replacing the couch, and makeshift ropes for pulling himself up. The den was a crowded explosion of diapers, medicine bottles, stores of candy and polls of pennies, and covered with a carpet that had been victim to one too many missed trips to the bathroom. In one last act of constructive frenzy, he then did something that I know his younger pre-Parkinson's self would have not approved of. He had a larger screen television to make viewing easier but couldn't get it up at the right level unless he put it on the hutch, which was not made to hold something that wide on its main exterior shelf, there being a stack of other shelves taking up the rear half that rose higher up. So, he chipped away at the edge of one of the shelves of that beautiful hutch, that work of art, haphazardly removing just enough of the shelf to fit the television in. Of course, by this time Parkinson's-induced acts of destruction had become rather common.
His old doctor had died by now, the only one that knew how to handle his "disease" and in his place was a younger doctor that had never heard of "Parkinson's" before this and seemed more concerned with his practice then his patients. The word "clueless" came to my mind on more then one occasion.
I'd gotten into herbs and such by this point and hit upon an idea. L-Glutamine is an amino acid that helps to improve brain function, so I reasoned it might help out my father. We started giving him some, at the height of his hallucinations, when his stumbling was the worst. A half tablet a day for week after week. Then about three months into this we began to notice a change. Those hallucinations disappeared, never to be seen again, and his stumbling lessened during times just after taking some L-Glutamine. The doctor was surprised and confused, could not account for actual improvement in a patient and asked what we were doing to him to achieve this. My son's idea, my mom told him, though the doctor was still confused with this minor miracle. He's a doctor after all, so if there's any miracle making he should be the one to do it, not some person's son from just off the street.
Of course, I just have a Master's degree in Physics, what do I know about anything?
I was starting to understand my dad's lack of faith in the medical professions. Anyway, he started to improve, at least in the seeing things and walking departments, and soon Artane was dropped. Senement and L-Glutamine became his regimen and now my mom began listening more to what I'd recommend then what the doctor said. He became a running sad joke for my friends, walking and stumbling, but they didn't see him clutch desperately at anything on the way down or have to pick him up afterwards. If you think it's difficult having anything breakable in the house around toddlers, you should try a stubborn Parkinson's patient. At least a toddler will eventually get better.
Keep him in a wheelchair you say? Remember, he's still trying to prove his father wrong. If no one was immediately around, he'd get up by himself and go for a walk outside. I don't blame him for not wanting to remain cooped up, but without a guide trouble was inevitable. He'd walk out to the front corner or to the store even when told we'd be right back from some errands of our own- we did have lives to try and lead, after all. But coming back there'd be some angry neighbor that didn't know better, spending more time complaining about how dare we leave him just lying around on the ground like that instead of helping him up, or someone else would just call the police when he would fall down and lie there struggling to get back up instead of helping. Once he'd managed to sneak out when I was working on my computer and my mom was gone, and next I heard were some police coming up with him; he'd been trying to make it to the local grocery store and fallen along the roadside. Once he'd made it all the way inside the store before my mom could catch up with him, but by then they'd called an ambulance out of concern.
Only a very few people just bent down to help out without screaming "elderly abuse". To those few I give my thanks and to the rest I say this. Short of physically tying him down when no one was there, there is no way anyone was going to keep this man down if he wanted to start walking, Parkinson's or not. We weren't going to drug him just for the sake of our convenience, and tying him down would be abuse.
My sister would visit as frequently as she could, but employment and the need to keep food in her mouth kept her away most of the time. Still, when she came she offered him the occasional massage, having become a Licensed Massage Therapist a few years back. But since her visits were so infrequent, she would be shocked each time at how much worse some aspect of my father's condition had gotten since last time. She didn't have to live with it day after day like me and my mom, not exposed to the horror in gradual increments but rather in sudden spurts.
Eating was another problem. Hands shaking so much, and even sitting he would start upright and gradually slide down to one side. At a restaurant he would leave about as much food on the table in a slow trail across its length as he'd eat.. My sister treated him to dinner once and was astonished and shocked to see the mess he'd make trying to feed, and as much as she loved him vowed never to take him out again. She hadn't lived with him all this time like I had. A disgusting sight to see even as you're thinking how sad it all is.
I'd started writing by this time, nothing published naturally but that didn't stop everyone from saying how good I was. I guess my dad finally found something to be proud of in me because he was always wanting me to send a copy of my first book back to the relatives in New York. But twenty dollars for copying and mailing were a lot, especially when I didn't want loose copies floating around for someone to steal from. The questions changed from "when are you going to get a job?" now to "when are you going to get published?". Now it was not bad enough to watch my dad deteriorate, now not enough that I had to feel guilty for not being able to get my life started and some money coming in for something like a nurse or even just a normal standard of living, now there was the depression of having something great and no one listening, not agents or publishers. I know my dad meant only to encourage me, but every time he'd ask if I was published yet it would be like another stab to the heart. I didn't need anymore things to feel guilty about, nor anymore reasons to feel sad; looking at my father's condition did that.
The local coffee shop finally requested that he not come again. One too many times of food trailed all over the table and floor.
By this time you get so involved in just dealing with the situation you've little time to feel. You're struck by the inconvenience of it all then have to catch yourself and remember about what's really going on; the analytical part of you wondering how much worse it might be if some disaster took your mother and how it'd be better if he went first instead, but then your emotional part wakes up and starts slapping you around for such thoughts. His voice so far gone that conversations amounted to trying to anticipate what he was stuttering about or trying to point to. That carpeting in the den that had become so smelly and urine-soaked that you ended up just throwing it away, and getting a rash on your arm just carrying it out to the trash bin. You try to clean up, and the smell in the den does get better, but things still worse over all. He takes baths, and you end up being the one to pull him out of the tub when finished, but still a faint smell of urine emanating from his body; I've since heard that's an actual medical condition now.
As much as he is unable to, he still tried to walk. I'm typing another book on my computer while my mom's away then hear this slow step and drag from the next room. Five minutes for him to make it twenty feet just to start stuttering out the question "Where's your mother?". Five minutes of distracting step and drag when you're on a roll on your story. So, you start trying to head him off when first you hear it, but stubborn as he is he must finish walking to your room to ask, won't just answer back when you call to him. Then you march him back, using your feet to kick his along from behind in the only effective way of getting him walking.
I'd become the one to do the heavy lifting, the one to lift him up and get him back to the den from the front yard, or out of the bathtub, or into or out of the car on the way to church. When he was feeling good, he'd try walking around, and sometimes actually make it somewhere. As proof to how much stubborn determination can overcome, there was one day when the ice cream truck was jingling along past the house, me and some friends out around the table outside. We have a long yard, so the ice cream man would take a while to pass us up, but suddenly there you saw it. My dad running out of the den and across a hundred feet of driveway shouting and waving to the truck as best he can with not a single stumble along the way. We were amazed! He came back with his ice cream at a much slower pace, now suddenly needing to watch himself as he resumed his stumbling along. Comical, sad, and many other emotions.
Then he stopped going to church. Another request, this one by necessity of getting him there and back with my mother behind the wheel. Such a devout Catholic, he'd still break out his Missal on Sundays or watch some televised mass. The church that he'd gone to every Sunday for longer then I'd been alive, always putting something into the offering basket, and now having to stop attending. His last source of regular outing and that which he treasured the most. Maybe the priest would visit him, check on how he was doing, talk to an ailing long-time parishioner.
Sorry, that only happens in old movies. Long had they known of him- he'd used to sing in the church choir back when they had one- and his wheel-chaired presence, so it was not like he was some anonymous figure no longer there. But not once did we see a priest or even hear a phone call from a concerned church voice. I guess they were just glad to have the stumbling one out of their way.
I didn't stop believing in a god then, just in churches and religions. It seems to me that they now do more harm then good, but that's another subject.
He's around the house constantly by now, unable to go anywhere and by default neither were the rest of us. My mom or myself had to be here, or the both of us together gone for no longer then an hour or so lest he try and get up for a stroll or try his shaking hand at fixing something. He'd still manage to perform the occasional miracle of having something cleaned up when we'd return, still puzzling considering his condition, but he was still stubborn and fighting it. More often would be a mess, something to clean up, or some position he'd fallen into and be unable to right himself from.
He had grown afraid of the world now, or at least of how helpless he was. His first revelation came once when he fell in the kitchen and stumbled right into my mom, landing the both of them on the ground in a painful position. I rushed to help my mom up but he balked; he wanted to help her up himself but couldn't, was angry at me that he could not. I ended up getting them both up and that became the first time that he found himself unable to help and protect his own wife. He had shown a weakness and that was not in him to do so. After that, showing weakness seemed easier though no less disheartening.
He became insistent about locking the door when he was even risking being alone, afraid of someone coming in. Fear in one who had never shown it, not to us kids or to his friends. Hard for the son to take, hard to watch. But that would not be the worst, not by far.
He had regular trips to the doctor, the one amazed by what one little amino acid could do, and each time the guy ended up by saying that my father was fine and looking better. Yet I with my untrained eye could see the same man stumbling along and lose complete faith in the standard medical practice. If the doctor was stuck for any answers, he just should have said so.
He had but one facial expression now, a blank slack look that was hard to look at. He'd stare at you as he tried to form words or just to see what was happening and you'd find it difficult to do what you were doing with that stare. So, back inside the den you would take him even while regretting it, but you just cannot concentrate with that blank stare.
The den had a couple of urine cups lying around; not too sanitary but better then before with the carpet when the smell had wafted in through the house. No choice here; you're poor and making do as best you can. Some insurance money comes in from your mother's father's house burning down- that grandfather having been long since dead- but the medicine is still expensive as is caring for him, and yourself still unemployed, at least not with anything that can be called other then an "odd job". Several books awaiting a publisher to be sure, but the agent you found is a bum.
A mess in the bathroom once, and I'm still not sure how. He'd gotten himself to the toilet and been sitting down doing the expected but something went amiss when reaching for and using the toilet paper, something for which he was truly embarrassed and angry about. He'd missed and gotten the feces on his hands then when trying to stand up managed to get it on the walls nearby. Still determined to fend for himself, he apparently tried cleaning himself and the wall off but only succeeded in rubbing it in, including in spots I would have judged impossible for him to reach. Not until years later was I able to get to it and scrub and sanitize every last bit of it off.
Then on more then one occasion there was the matter of pieces of feces getting stuck in the hair around his rear, stuck and tangled. For the sight of my mom taking a pair of scissors to cut it out, I closed the door in disgust and sadness.
He spent most of his time in the wheelchair sitting in the den, aimed at the television. I say "aimed" because he had grown beyond the ability to work any form of remote control. He liked cartoons but the cable networks we were too poor to afford had taken up all the good classic ones, so we'd tune in Sesame Street and let him watch the colors and listen to the sounds. Every time I went into that den, signs of sickness all around, the death bed against the wall, it was to see him watching expressionlessly the television, unable to move or change the channel, unable to see some of it most of the time. Yet, he was aware, you could see it in his eyes, and it pained me to even look into the den and see this man who was my father reduced to this sorry state; I have too much the ability to empathize with someone else and seeing him there I knew what it'd be like for me in that position and it was horrible. Once one who was one of the best salesmen a store chain had ever had, once one who made things with his hand, once someone who sang with a barbershop choir. Now when I helped him in through the door, saw his stooped shoulder, the head tilting to his left, and the face unable to express what he felt, I could see only a walking corpse.. I could not walk into the den without holding both my breath and my emotions. I wanted to mourn his passing but he was still alive.
He spent most of his time in the wheelchair sitting in the den, aimed at the television. I say "aimed" because he had grown beyond the ability to work any form of remote control. He liked cartoons but the cable networks we were too poor to afford had taken up all the good classic ones, so we'd tune in Sesame Street and let him watch the colors and listen to the sounds. Every time I went into that den, signs of sickness all around, the death bed against the wall, it was to see him watching expressionlessly the television, unable to move or change the channel, unable to see some of it most of the time. Yet, he was aware, you could see it in his eyes, and it pained me to even look into the den and see this man who was my father reduced to this sorry state; I have too much the ability to empathize with someone else and seeing him there I knew what it'd be like for me in that position and it was horrible. Once one who was one of the best salesmen a store chain had ever had, once one who made things with his hand, once someone who sang with a barbershop choir. Now when I helped him in through the door, saw his stooped shoulder, the head tilting to his left, and the face unable to express what he felt, I could see only a walking corpse.. I could not walk into the den without holding both my breath and my emotions. I wanted to mourn his passing but he was still alive.
I tried to keep my tone normal enough, to talk in normal tones when going to see him and my mom in the den, even when told to be quiet for I figured the effort of him quietly scolding me was some form of interacting, some means to involve him and make him think things at least a bit normal. Still, every time I came home I would fearfully glance up to see if the television lights still danced in the den window, every ambulance siren would have me jerk, and even late at night when editing or on Internet I would check in on occasion, standing in the den's doorway looking for his chest still moving up and down, so faint the breath.
My sister showed more the reaction of horror every time she came by but managed to keep it from his presence. As much as one can be filled with emotion over such an ailing person, one can't help but be concerned with the minor things. In her case it was a spaghetti sauce and meatball recipe that he had made since when we were kids. One of those family handed-down things which he'd worked on perfecting and now she was afraid would be lost forever. Like I said, the oddest little details can come out at you in the midst of such pain and suffering.
How long can agony and suffering like this go on? Too long. No miracles, no dramatic interventions, not even a son getting published to justify his father's faith in him. Nothing but day after day trying to cope with the sight of the thing in the den that used to be your father, while trying to put your soul into your writing. You get a menial job at a computer store but the owner seems more intent on forgetting that you have a master's degree and more on getting his jollies at your expense. The only time with some relief is on weekends with your friends over for gaming but the "friends" are often more concerned with arguing with one another then complaining when you have to rush off across the yard to pick up your father. Some relief; then they wonder why you're always uptight.
Two more years of the worst of it, two years during which every day I knew I was watching my father die. Keeping emotions pent up that I dare not show around him for fear of his own emotional state, two years of abuse by friends and the world in general, two more years of the failure that is myself and thinking that I should have been successful enough to at least give my father some comfort. The suffering of the patient is a part of it, the suffering and inconvenience put upon his family is another part. But little is said of the guilt suffered by those who help as much as they can but can only watch, the guilt of thinking over how much else could have been done. Guilt, and the sight of that drawn expressionless face propped before a television like a doorstop.
Then it happens, the last straw. Winter was long and rainy at the start of the new millennium, my father unable to venture outside for fear of a cold or worse. So, he was kept in bed covered in blankets while we waited out the rain. He couldn't really go anywhere and barely move now and to top it all off had gotten himself a cold. My mom closed herself up in the den with him to care for him, keep him company and hope for the bad weather to cease. When it finally did clear we peeled him out of bed to give him and his mattress a good cleaning and found the new problem.
His legs had atrophied to a degree I'd thought impossible. Those guys playing the sick and dying you see on movies? They're healthy and athletic in comparison to this. His upper legs near his thighs were no bigger around then my forearms, and I have skinny forearms. Sticks wrapped in skin drawn loose. Almost a broken puppet, his paunch drawn into a skinny frame. I make a joke about his finally loosing the weight, just to keep his spirits up and my own hope but all I can see is this impossibly skinny frame with this huge head atop it. My dad's head was always large and now it was about the only thing left not shriveled, leaning though it was into his left side. I started to wondering just how much of his collar bone was actually still there. Then we turned him over.
They weren't just bed sores but some kind of infection that had literally eaten into his back. A brief glance I had but enough to see a blackened hole I could have shoved a few fingers through, or at least that's what it looked like before I quickly turned away. Immediate reaction? In my dad's presence I played down what I felt. His mood was important, that I knew, and as much as a part of me felt the inevitable, both myself and my mom were determined to squeeze some hope out of this. We quickly covered the blankets back up over his legs and cleaned him up as best we could.
The plan was this. We'd had some extra money now and would use it to get him a room in one of those convalescent places. A hospital was out of the question, of course, but we needed some place with an IV. We tried to feed him but he could barely open his mouth and couldn't swallow at all anymore. So we desperately called around while my dad slowly starved. We figured it'd be easy; find him a place, get an IV tube in him to feed him no matter what he thought of needles, then build up his strength enough to get his legs back and those wounds cleaned up.
Except that his doctor got in the way; that one that had replaced the original and much better one that had first treated him. We told him our plans to get his help but he said he was not going to approve him going to a hospital or convalescent place without an examination. Fine, we say, but hurry over and examine him because it's urgent. Turns out doctors don't make house calls even when it's literally a life or death situation. The doctor said to bring him into his office and he'd examine him there, but my dad was weak to the point of breaking. He could only be moved once. The doctor didn't see it that way.
My dad did manage to move once. I was alone with him and he wanted to have a walk around, just pulling himself up out of bed when I'd gotten to him. With legs like sticks and that heavy head of his, I'd had visions of both legs snapping off on his way down. I got him back into bed, telling him he could have a walk around once my mom had returned, anything just to keep him off those week legs long enough to get him someplace where we could get some meat back on them again.
So, we called around. To the hospital, to different convalescent and care places, but each time this doctor intercepted us just when we'd have things arranged, telling the establishment not to take us in because as the man's doctor he hadn't given his permission. He was trying to cover himself from litigation but by doing so was violating his care-giving oath as a doctor and killing my father. This went on for two months, the doctor running interference to cover his own rear while my dad got progressively worse. The last two weeks my dad's face had the drawn skull-like grey look of death, and let me tell you they have yet to fake that properly in the movies. No mistaking that look, that aura of death, the raspy breathing, the head still digging deeper into his left shoulder-blade. The look of death yet we were still determined to see him get better.
We finally made an arrangement with a care-giving place that didn't care much about the doctor. They would have an IV ready for him and a room and get him up on his feet. But even here the doctor managed to interfere, telling them that my dad must first be brought to an emergency room for a look at by himself before he would sign any papers. So, we arranged for an ambulance to pick him up one Saturday evening; no lights or noise so attention would not be attracted. It happened to be another day with my friends over, and I told them I would be on call to help with my dad yet even with this warning there was impatience. I would be called over by my mom as she cleaned him up to help turn him over or move something, but I would hear from behind me someone shouting to hurry up that I was slowing the game down. I'm watching my father die and they're more concerned about their game?!
Well, evening came and all I could do was sit in my room and watch television and wait. The plan was for my mom to accompany my father in the ambulance ride and me to stay home as the contact point. You see, my sister was hard to contact so someone had to be here to take phone calls and tell her where to go. That would leave me all alone wondering, worried.
My dad awoke once and I was called in. A few cheery words and a smile to tell him we'd get him better– and at that time a part of me still believed that we could. He was unmoving except for his eyes and in them you could see that he was still aware of everything that went on. Aware, cognizant, but trapped. A light touch to his head then I was dismissed back to my room. She didn't want me in the way for when the ambulance came, the den now being crowded enough with the junk of the sick as it was. I saw the ambulance pull in, waited, then watched them leave. The drivers had been warned about his neck and spent such great care to wrap a collar up around it, then ever so carefully put him onto the stretcher and bring him away into the ambulance.
I was alone, waiting. Nothing but the television for company, no one to talk to, no one even home to phone. More alone then anyone should be allowed to be. My complete failure, you see, is that not only was I still unpublished and basically unemployed, but the closest thing I'd had to a girlfriend was back in grammar school; I don't even have any girl's phone number to call, so you can see the true extent of the loneliness and fear of waiting.
My sister called and I relayed the messages, pointing her to the right hospital; Arcadia Methodist Hospital. She hung up and I was back to waiting again.
The next phone call I got was a little after Eleven at night. It was my sister and she could barely speak...
I later learned that it had gone down like this. The ambulance drivers brought him to the hospital where that doctor apparently had some clout, and the first thing they said was to be careful of his neck and that he needed an IV. The head nurse, apparently having more self-opinion then she had training, not to mention a husband high up in the hospital hierarchy, immediately took over, bullying aside even the doctor on call. The brace around the neck was ripped off with a clunk and the first thing she'd ordered was pictures to be taken. No IV yet, no care given, just pictures to prove that's the way they received him and so how it's not their fault if he dies on them. More concern with their own rears then the sick. My mom frantically asked for the IV, then when trying to give him his medication was stopped by the nurse; no pills in the emergency room. Didn't seem to matter that my dad could barely breath much less move without another dose. Besides, the nurse said, he's already in a coma and dead anyway.
Last I checked, it's a doctor's duty to pronounce such things, but the doctor was nowhere to be seen. This beside the fact that his eyes were flickering open seeking out my mother. A fixed gaze doesn't always mean a coma, you could see the fading life behind them. But this nurse seemed to think that having a doctor for a husband qualified her to make important medical decisions. Under her command my dad was hefted onto a table like he was a sack of groceries, the neck brace ripped off, then the picture-taking begun.. No concern at all for his health, all confident that since he was on his way out it was best to prove their lack of fault. The doctor that had run so much interference never did show up, and it was a full hour before the one doctor on call that night came in with an IV. Naturally, it was too late.
I figure this way. After being hefted about like a lumpy bag, treated so roughly, then the pictures, my dad must have just gotten fed up with so much incompetence and just gave it up, once again taking matters into his own hands. Parkinson's tore cruelty at his body and soul but he never really gave into it and we never stopped trying to save him from what some might term inevitable. Even with him entering into the ambulance we kept thinking of what could be done next to improve his chances, despite all the future burdens on finances and life it might bring. That's all you can do really; not merely hope but believe there's no such thing as inevitable or insurmountable when you fight against the cruelty, suffering, and stupidity of the world.
Still, receiving such news late at night, all alone, even after so much time of thinking him the walking dead with conflicting emotions lancing through you, it's the worst possible way to hear it, if ever there is a good one. No one to mourn with, I had to look into the mirror that someone see my face as I openly wept.
My father, William Patrick Tierno, passed away on a Saturday evening, shortly after turning 73. The worst day yet or since of my entire life.
My dad was buried dressed in the jacket from his barbershop chorus and with his prized Missal placed between his hands.
I since learned that the Arcadia Methodist Hospital in Arcadia California has a high incidence of patients dying and that its doctors are more concerned with the value of their cars then that of their patients.
The head nurse was later hit by a car in the parking structure of that same Arcadia Methodist Hospital but was smart enough to have herself shipped to a different hospital for treatment. I hope she gets kicked out of the nursing profession some day.
My dad's doctor never did show up at the Emergency Room even after all the trouble he gave us, and we haven't heard of him since. It's my dream to see his license pulled and himself banned from any sort of medical profession or any job where he'd have to care about people.
My mom was at first more depressed then even she knew but I saw it and took steps. Now she is in good cheer and of better health then most others her age. I wasn't about to lose a second parent.
My sister missed the spaghetti sauce my dad was known for. But fortunately before she could lament, I reminded her of all those years I'd spent looking over his shoulder every time he made up a batch. According to my mom mine came out at least as good as anything my dad had made. My sister spent some time regretting her lack of time spent with my father, but having been the one constantly around, I consider her the lucky one.
For myself, I now distrust mainstream medical doctors and organized religions, and as of this writing I remain unpublished, though opinions are in favor of my deserving some attention. If or when I do get published, I know what the dedication on the first book is going to include...
"To my dad. For good and for bad, I love you."
August 29, 2002
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