Ace Of Spades Feels Good

It’s been a long time since I’ve posted about Mashuptown. I’m not sure why. But there’s no way I let this one slip by unnoticed! (Click the image to play, if you didn’t get the embedded player

It’s been a long time since I’ve posted about Mashuptown. I’m not sure why.

But there’s no way I let this one slip by unnoticed!

GorillazvsMotorhead-AceOfSpadesFeelsGood600.jpg

(Click the image to play, if you didn’t get the embedded player

No Kobayashi Maru

Today in a school conference for my older daughter, one of her teachers said ‘she seems a little stressed’. This stands out, because more typically, teachers say things like ‘I wish I had a a whole class like her’. I explained to the teacher a bit about the current events regarding my mother The fact […]

Today in a school conference for my older daughter, one of her teachers said ‘she seems a little stressed’. This stands out, because more typically, teachers say things like ‘I wish I had a a whole class like her’. I explained to the teacher a bit about the current events regarding my mother

The fact that my daughter is stressed is neither news, nor unexpected. But saying it out loud to a stranger made me think about exactly how much stress this really is.

Things have not gone well in the last few weeks. I’d hoped mom would improve, once she began to get regular care. Once she knew we’d be around daily; once she had a nurse to tend her wounds, medication for pain and anxiety, i figured, she’d begin to feel better.

Mother’s never been long on coping skills; memories of this flood back. Now, suddenly, I remember her complaints about clothing that didn’t fit like she liked, or shoes that were too hot, too tight, too lose. I remembered driving back 300 miles on a family vacation because she’d left the only pair of sunglasses she could tolerate in an egghouse in jackson hole, wyoming.

These scenes were so ubiquitous in my childhood that I hadn’t even considered them in decades.

Yet now, I see what I saw as a child; panic, fussiness, intolerance of any discomfort or frustration or insecurity. I remember now seeing my mother react in screaming agony or howling rane to things I wouldn’t even break stride for.

All of it comes back, now that her limited coping skills are eroded to nothing. With her short term memory almost completely gone, anxiety engulfs her, and every discomfort, every question, every task, leaves her shaking and gasping. She’s alternating between rage and terror, with no clear idea of what’s she afraid of.

And I watch in mute frustration.

I’m ill-equipped for the unsolvable problem. I always describe this – revealing the depth of my geekiness – with a star trek reference. Kobayashi Maru – the no-win scenario. In Wrath of Khan, Kirk refers to having hacked the test in order to provide a ‘win’ scenario for a test that was supposed to have no solution, stating that he ‘didn’t believe in the no-win scenario’. That’s me. Down deep inside, I’m absolutely certain there’s a fix to every problem, given enough cleverness, enough resource, enough refusal to accept defeat. Things that can’t be beaten or out-thought or hacked fall far outside my frame of reference.

Thus, old age and mental illness mock my inability to solve them. Rage does no good; negotiation is useless. Even brute, cave-man force does nothing but worsen a tragic situation.

I lost my temper with my mother last weekend. Even knowing she’s physically helpless, slipping into madness, and utterly miserable, she exceeded my tolerance when she decided a bandage was causing the wound under it. She’d taken off her bandage, and told me proudly that she was going to call the nurses and tell them they couldn’t come and hurt her any more.

I yelled at her. And she yelled back, screaming that I don’t understand, that I don’t know what’s wrong. I wound up in tears, and she looked at me in confusion, not sure why I was mad at her or why I was wiping tears out of my eyes.

I am utterly powerless to help her; and every call I make to her doctor, her social worker, her nurse, leads to another goose chase that eats the hours of my day.

The stress is getting to me. Because I can’t move anything along. The hope of her improvement seems to have been in vain; yet to her doctors feel she’s getting better because the wounds on her leg are closing.

Because they gave her prozac for her depression and codeine for her pain, they feel the fatigue and anxiety are solved. Never mind that she refuses to take her meds out of terror they’ll exacerbate her confusion. Never mind that she’s coming apart mentally and physically. Never mind all the other things that might be wrong with her, given that she hasn’t been to a doctor in years.

And so I’m left to manage nursing care for a patient who won’t follow orders, by an agency that only wants to shovel her into the grave as soon as they can so they can close out a file without any more cost.

Twelve or thirteen years ago, my brother died. And I didn’t morn his passing; he’d checked out, mentally and physically, years before. I’d said my goodbye to him already; his death brought closure and relief. I did not expect to experience that again in my life; and yet here I sit. My mother is in a state of crushing misery, a trap of fear and pain she can’t escape, and I have no tools to ease her pain, no comforting words for someone who can’t remember what anyone said to her five minutes before. And all I can wish for today is that she slips quietly away in her sleep, saving further pain.

Today, we spoke to a nurse – finally someone who seems to recognize the severity and tragedy of the situation. For the fist time, someone from Kaiser agreed that she needed real care, something more that ‘two aspirin and call me in the morning’. Perhaps her experience in hospice nursing will carry weight that my ‘inexpert’ opinions don’t, and they’ll take some action to provide the care she’s entitled to as part of my father’s pension. My fingers are crossed, yet my expectations are very low; Kaiser cares about it’s patients the way a slaughter house cares about it’s product.

And what I can do now, is simply try to manage my own stress, and that of my family. My children have seen too much death and pain in the last two years; this will make the third relative down this path in that time. My job as parent is to tend them, giving what I can’t give to my own mother. And that one thing helps my state more than anything else I can do.

the last shared parent

I had a long conversation today, with Sam (my surrogate cousin, my imaginary first love, the girl my brother and I used to fight over). I had to tell her, in far too few words and in a conversation broken by lousy cell signals and interrupted by teenage children, about the looming loss of the […]

I had a long conversation today, with Sam (my surrogate cousin, my imaginary first love, the girl my brother and I used to fight over).

I had to tell her, in far too few words and in a conversation broken by lousy cell signals and interrupted by teenage children, about the looming loss of the last of our parents.

Sam and I are not related by blood; her mother Penny was my mother’s best friend. I have very little in the way of true blood family; we’re some odd California branch of a family tree with roots in North Carolina, Texas, Oklahoma and New Mexico. I had no idea what aunt or cousin meant growing up, because Penny and her daughters were closer, physically and emotionally, than any blood relation. They were my best friends, and meant as much to me as my own brother did.

We lost Penny to cancer fifteen years or so ago; I can’t recall the date because, for reasons too stupid and painful to address at the moment, I learned of her death and funeral months after she died.

Not so long after – twelve years ago, give or take – my father was taken down by a heart attack, and then my brother that same year, by his own hand.

My mother’s the last of our shared parents.

My mother’s decline has been steady. Born in the late twenties and a child of the era between the world wars, she took up smoking early, and kept that habit for nearly seventy years. Only a diagnosis of emphysema stopped her, and to her credit, she stubbed out that last cigarette and never looked back at it. But anxiety was really the trouble. Because anxiety masked a condition far worse than she’d admit to, and worsened her already severe shortness of breath.

I do not know when she was diagnosed with it; she never told me. I learned of it only when I had to drive her to a doctor’s appointment. My mother, typically, had been denying her condition, refusing treatment, hiding her inhalers from me. Prescribed oxygen 24×7, she was using it ‘as needed’, which means only when she felt like it. And of course, she’d been lying to her doctor as well.

My mother, from the time she was a child, has felt that she must ‘keep up appearances’, as her mother taught her. Which means always pretending to authority, always showing a brave, funny, capable face. Yet, the other side of her is a devout counter-culturist; authority is something to be resented, to be defied. She taught me to break the rules without getting caught, taught me to defy and flaunt. And so, of course, she would present a front to me and to her doctor; to me, she denied any significant medical issue, and to the doctor, she’s say yes I’m using my oxygen and yes I’m doing the exercises and yes, I’m feeling pretty good.

But she wasn’t fine. And she wasn’t following what the doctor said. And she wasn’t telling me any of it.

It wasn’t until her emphysema took a drastic turn, a couple of years ago, that she finally needed help. And only when speaking directly to the doctor did I find exactly how my mother had been denying the severity of her condition.

Of course, when I tried to talk to my mother’s doctor about it, about mom’s life-long mental health issues, about her denial, about her crushing anxiety and panic attacks, the doctor brushed it aside. Never mind my insights as her son, never mind my obsessive medical research (i read medical and psychological diagnostic and treatment texts for fun); I was a fucking layman and my opinions carried all the weight and interest of an expulsion of gas.

My family, what I know of it, has a history of mental illness and addiction. My brother suffered for many years from an almost entirely imaginary condition; my maternal grandmother was both a severe alcoholic, and bi-polar. Her mother had some other ailment, the details of which I’ve never heard. So it’s no great surprise that my mother suffers an impressive stew of conditions. She’s always spoken of agoraphobia, though I frankly think it’s more skin to a social anxiety disorder. She also frequently shows signs of obsessive-compulsive behavior, and when she was younger, and uncontrollably violent temper. Anxiety and panic have been part of her life so long she doesn’t ever recognize them.

Of course there’s no mention of any of this in her Kaiser charts; she’s never sought any significant treatment for it. It’s news to my mother’s doctors that she has any anxiety at all, let alone my assertion that she’s been largely crippled by these conditions.

After we saw her doctor together, my mother accepted, with very little fight, that she needed to keep her oxygen on all the time. However, she also decided this meant she could no longer leave the house.

Ever.

My mother managed to beat back her fears for most of her life. She worked, successfully, in libraries and book stores, eventually becoming a significantly respected children’s literature expert. She participated in running our school, went to rock concerts with us (because she loved the music, not because she felt we need any chaperoning). She was reasonable social and reasonably active most of her life. But when my brother’s demons slowly won their battle with his sanity, she seemed to give up, giving in to his, and to her own. When he became a shut-in, she first facilitated, and then validated is choices to hide from the world and resist psychiatric care. When my father died, se dedicated herself to the care and feeding of his madness, cutting the pair of them off from any help. She participated in his decline, and assisted in his suicide.

After my brother’s death, my mother gave up any significant relationship with the outside world. So when she put on the oxygen cannula, something that, to her, was some vast flashing beacon drawing the very attention she’d spent her life fearing, she closed and locked the the door between herself and the outside world.

For a time, I thought this was temporary. She’d been managing her life effectively, shopping, cooking, cleaning. It seemed reasonable to me that she would need a bit of time to adapt to living on oxygen, to carrying a tank to the market, to the logistics of an umbilical. I happily stepped into the role of care-giver, shopping for her, running errands, making sure her car stayed in working order. I worked with her on ways to rig her portable oxygen tank to minimize discomfort, explained why it worked differently than her home unit.

It would be temporary, I assumed. My mother, her entire life, has been fiercely independent. She has never asked for help; she’s never wanted care, never wanted attention when she felt ill. Like me, she wants to do it herself, and would rather be left alone than tended to. So of course i assumed she’d remain independent, not letting a trivial matter like a bottle and a tube daunt her.

Somehow, though, this one thing, this utterly insignificant thing, was her undoing. Every moment fearing she was being looked at, every imagined judgement, every side-long glance came together in a laser-focus on the clear tube up her nose. She would even take it off and hide it when I came over. It was as if the house of cards she felt she’d been building her entire life had suddenly crashed down. And she gave up, completely and permanently. Her life, the part outside that small, empty house, ended.

For several months, I’d come over weekly with groceries, each time suggesting that she come with me. After a time I figured I was enabling, figured she would get off her ass and do something when she needed milk. So I stopped coming weekly, and began to go less often, or come by late, saying I don’t have time to shop, but give me a list of anything urgent and I’ll bring that one thing back tomorrow. But she made no move to go, showed no willingness to move forward. I soon found she’d never even tried her portable oxygen; she refused it when I tried to get her to practice putting it on. She hated the sound it made (a demand valve, it makes a faint nose like a scuba regulator); she hated the way the case looked. She hated the strap, but refused a cart. She grew frantic at the un-balanced weight of it, even when lifting it.

It began to become clear she wasn’t going to go out. After a bit she asked me to get rid of her car because she didn’t want to worry about starting it any more.

On the other hand, she found ways, eventually, to be more self-sufficient. She ordered groceries on line, she shopped for things she needed by phone. Her pet store delivered cat food, her wild bird store delivered seed for the birds and squirrels she feeds obsessively.

This worked for a while. But she resisted any medical care of any kind, canceling any appointment she or I made, fighting with me over the mention, and panicing to the point of fainting the few times we went in. She would become combative with her doctors, insulting them and insulting me when I tried to help. And predictably, small things began to fail. She’s eighty years old; at that age, bolts start falling off the car.

Minor sores and wounds are non unusual with eighty year old skin. Aches and pains and difficulty sleeping are not a surprise. And my mother hates talking about these things. So we went along for months, me visiting every week or so, bringing fresh fruits, hot food, doing chores. And she’d complain about trivial things that hurt, and then change the subject when I said “let me look at that” or “let’s get to the doctor.” One of my great strengths is efficient, non-nonsense problem solving. But the flip side of this is that I don’t have very much sympathy for those who won’t take help, or who won’t take action to solve a problem. So if Mom bitched about her leg hurting, and then wouldn’t make or keep a doctor’s appointment, I shrugged and said, fine, then quit bitching if you won’t take action.

Trouble was, she was slowly sliding down hill. And I don’t have the patience, or the bandwidth, to monitor her condition if she wouldn’t admit it when I ask.

It wasn’t until the panic escalated that we got anywhere. And then, not very far, because, again, she would not follow a doctor’s instructions about care, and won’t keep a follow up appointment when its made. And so the condition has continued to grow worse, and my attempts to help have been rejected, or dismissed.

Mom’s pain, from sores on her legs, is now to the point of agony; her sleep has grown more disturbed. She became obsessed with the idea that she had diabetes (she doesn’t), and then that she had contagious infections (again, she doesn’t; the sores are from vascular disease caused by age, years of smoking, and general poor health). Her obsessive nature has gotten more and more focused on trivialities, her panic has grown worse, and her health, stable for some years, is now spiraling down.

I do not know if the decline in her mental state is the early phases of alzheimers, or if it’s simple age and prolonged lack of sleep. But her short term memory is nearly gone, and her confusion and anxiety seem worse each day. In the last three weeks, she’d begun to speak about ending things; though in truth I don’t think she’s serious. And if she is, I’m not sure she’s mentally or physically able; but her state of despair is profound.

And of course, Kaiser, her health care system – well, that story is saved for another time. To say they’re like a government agency does dis-service to government agencies. A profit-focused corporation, they make it painfully obvious that cost is the first and last thing considered in every medical choice, and that no medical order is carried out without business approval.

In short, though, this is the story I had to tell cousin today. Some of it’s old news; she’s helped as she can in caring for my mother (though she lives several hours away, and as a single mother of three, her bandwidth is limited). But she’s seen the decline over months. The story I told her today was tragic, and yet, both of us understood, the great tradgedy isn’t that my mother is old, and sick. The tragedies are that she has fought every step against help, and that the agency that gives lip service to care, cares only about cost, and not at all about the well-being and comfort of a confused, frightened, sick old woman.

Sam and I have both seen death. We’ve said goodbye to parents, and to a sibling (for she considered my brother to be nearly hers as well). She’s lost a mother to cancer. And when we talked today – the first conversation we’ve had in years – the un-spoken thought we shared was that we’re about to lose another one. And both of us know full well that all we want is to provide comfort and dignity, for the short time until that happens. Yet these things are in short supply, and we are powerless to provide either.

Sam and I have not kept in close enough touch these last few years. Our lives have gone off in parallel directions; careers, children, loves and losses and tragedies and joys. It’s been a long time since we shared a bed innocently as pre-teens, or hugged each other over some imagined adolescent misery, or played doctor, or slap and tickle in the swimming pool. Yet that was what I remembered after we talked today; the moments in my youth when she was, to me, the most beautiful girl i’d ever seen, the one woman I’d ever love. I remembered the sillieness of my crushes, and the rage when my brother would fight me for her attention. Those memories, good and bad, where of foolish youth and innocence. And what I wanted to was to go back, to before we had any reference for what pain or love or real life were and just play a game of killer or last touch, or to hike to the store up the hill from our cabin to buy ice-cube candies or peanut butter cups.

Hearing her voice, what I heard was childhood. And nothing ends childhood like becoming a parent to our own parents.


the above was written in one burst and not edited at all. I’d originally intended to re-work it later. *shrug* I didn’t.

outage

We had a server problem last night and this morning, so moronosphere.com come was down. Let me know if any mail sent to me bounced back to you. Meanwhile, all looks well now.

We had a server problem last night and this morning, so moronosphere.com come was down. Let me know if any mail sent to me bounced back to you.

Meanwhile, all looks well now.

Neil Gaiman’s Graveyard Book

Cory just posted this on BoingBoing: Last week, I wrote about Neil Gaiman’s video book-tour for his new young adult novel, The Graveyard Book. Gaiman read a different chapter at each day’s tour-stop, and videos of the readings were posted, in sequence, to a website, so that you could follow along and hear Gaiman (a […]

Cory just posted this on BoingBoing:

Last week, I wrote about Neil Gaiman’s video book-tour for his new young adult novel, The Graveyard Book. Gaiman read a different chapter at each day’s tour-stop, and videos of the readings were posted, in sequence, to a website, so that you could follow along and hear Gaiman (a virtuoso reader) perform the full text of this wonderful book.

Seems like it worked. The Graveyard Book is now number one on the New York Times’s Young Adult bestseller list. And deservedly so: Gaiman’s combination of The Jungle Book’s elegant and sweet structure and style with a genuinely creepy setting and situation (Bod is abandoned in the graveyard as a baby after his parents are murdered by a serial killer; he is raised by the graveyard’s ghosts, who go back to pre-Roman times, and who give him an eclectic education and rescue him when he goes astray) is utterly inspired, and beautifully executed.

This is a book that is especially fabulous when read aloud — a perfect bedtime book for your little monsters. Neil Gaiman’s Graveyard Book — video tour

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I was at the reading of Chapter Five in Palo Alto, California, and I have to say, it was fucking fabulous.

My daughter is a huge Neil Gaiman fan; her favorite book is Coraline, and she loves Neil’s other kids books (like the brilliant Wolves in the Walls). She came home a couple of weeks ago bouncing off the walls with excitement over a flyer she’d seen about this reading. The timing couldn’t have been better; she finished American Gods a month ago, and finished the incredible Sandman a week before the reading.

The two of use share so much common taste and interest; I was nearly excited about this as she was, and she was practically vibrating on the way to the theater last Saturday.

Gaiman is one of my favorite writers; I’ve wanted to hear him speak for ages. He completely exceeded my expectations; as a reader, as a speaker, as a story teller. He’s funny, quick witted, surprisingly relaxed in front of an audience of almost seven hundred people.

If you watch the video of Chapter Five, you’ll see my exact viewpoint; we waited in line for a couple of hours and were sitting directly behind the camera.

I have not yet had time to read Graveyard Book; but if it’s anywhere near as good as the chapter Neil ready last weekend, it’s going to be a winner.

Neil also was showing exclusive clips from the Coraline movie, which is looking to be utterly stunning. Directed by Henry Selig of Nightmare Before Xmas, it’s got some of the same spooky, otherworldly quality of Nightmare, but with Neil’s unique point of view. I can’t wait to see it.

i can’t even think of a title

I keep meaning to write something long about this because it’s a topic that needs to be addressed in depth. The short version is that I’m in an utter funk right now because my elderly mother is is a state of decline and I’m fighting kaiser to get her taken care of, AND fighting my […]

I keep meaning to write something long about this because it’s a topic that needs to be addressed in depth.

The short version is that I’m in an utter funk right now because my elderly mother is is a state of decline and I’m fighting kaiser to get her taken care of, AND fighting my own inability to feel sympathy for her choice to stay helpless.

One of the tag lines in my rotating ‘description’ line in the header of this blog says better at euthanasia than at sympathy and I’m finding it painfully true. I’ve always been the one who dispassionately handles injuries and deaths; dispassion I can do. Commiseration with those who give up, I find, I have no stomach for.

In any case, I’ve disconnected from everything non-essential in order to get my job done and take care of what needs taking care of, so if I’ve dropped anyone, it’s not personal. The fact that I can’t even think of a title for this entry – something that’s never happened before – indicates my level of distraction.