What are you doing for Thanksgiving?

I have no will or energy for cooking, so we started calling in a radius out from my home to find a fun place to eat. God knows the family needs festival this year. The good thing is, we found something close. The bad thing is, I think I could buy a new motorcycle for […]

I have no will or energy for cooking, so we started calling in a radius out from my home to find a fun place to eat. God knows the family needs festival this year.

The good thing is, we found something close. The bad thing is, I think I could buy a new motorcycle for what it’s gonna cost.

What are you folks doing (or if you read this after, what did you do)?

ukuleles

This afternoon I went to a ‘ukulele jam party’ at the Poor House Bistro (a remarkably authentic cajun joint in down town San Jose near the Shark Tank). Friends (Kenny, Heather Courtney, DB Walker played, and then the gang from Ukulele Underground jammed for a couple hours.

It wasn’t that the music was good – it was in every sense a jam party. Sloppy, disorganized, happy, slightly drunken. It wasn’t even that they were playing hawaiian music, ’cause there wasn’t that much of it. I think it was just the sound of ‘ukes playing that made my eyes go hazy.

For a lot of reasons, it’s been a fucked up year. Much of it I’ve been buried under work, to the point where having a life seems like a faraway dream. And of course, there was the growing burden of Mom’s care. With the benefit of hindsight, I can see now that it wasn’t just an increasing level of nuttiness, but in fact was the beginning of a sharp physical decline. But it was one more thing I had to do in a year where I’ve felt like I was drowning in un-done work and responsibility.

There was a brief instant when I felt the pressure lift; when I realized that I could say a peaceful goodbye to my mother and let her go, not burden her and myself with a long, miserable struggle, it was like a weight off my shoulders. But the weird elation was short lived, soon replaced with the realization that work was about to bury me again, and that I’d had no time at all to process what had just happened.

If a crisis can ever have good timing, mom’s did. There was a short lull at work, a month or so where we were able to catch our breath. Mom, for once in her life, timed something perfectly. But the window snapped shut far too quickly for me. Plans to combine vacation with work shut-downs evaporated, and of course, my finances are in disarray, with mom’s death and the maintenance needed on her house far exceeding the liquid cash she had when she died. So even if I had time, going anywhere far, for long, is out of the question.

So today, as I sat drinking a beer and listening to ukuleles play, it all hit me, very very heavily. It felt like someone had dialed gravity up.

Hawaii calls me; not just as a physical place, not just as a vacation destination, but as a mental state. And more than anything else, Hawaiian music gets to me. I hear ukuleles and slide guitar, and I can almost feel hot tropical air on my skin.

It didn’t matter that these kids were playing bob marley songs; the sound of ‘ukes is so much a part of my mental Hawaii that I could almost smell the damp earth of Kauai.

It hasn’t been that long since I’ve been there. August of ’07 in Kauai, and before that, exactly this time of year I was in Kona in ’06. But the last year feels incredibly long, and I feet more tired than I been in five years. For the first time since the day I started work at Apple, I hate going to work every day. My weekends blink by and all I can think of is, when is my next day off.

I really, really need to get the hell out of here. I need to have a long time to do nothing.

I always hate entries like this and usually threaten to delete them. Just nobody tell me to fucking breathe, ok?

mom’s house

I keep thinking of things I need to write about, since the whole ‘mom’ episode has begun to settle into dust – pardon my pun. About the process of planning burials (fire!), about how odd it must be to work in that industry. About reading a certificate that describes the end of a loved one’s […]

I keep thinking of things I need to write about, since the whole ‘mom’ episode has begun to settle into dust – pardon my pun.

About the process of planning burials (fire!), about how odd it must be to work in that industry. About reading a certificate that describes the end of a loved one’s life in stark black ink on paper that looks like money.

About what it’s like to walk into someone’s home, when they’re gone, truly gone.

It’s been difficult to find time. With typically brutal timing, my employer has decided that upcoming holidays means it’s time to kick into high gear, so I’m suddenly swamped with work again. And of course the logistics of death consumes so much time that it’s hard to actually just think about what it all means.

Last weekend, we (me, barb, my cousins sam and amy, kenny and sabine) gathered at my mother’s house to begin the process of dealing with the physical remnants of a life.

I’ve been lucky; my friend Kenny and I made a deal. He’s back from his tour, and needed a place to live, and I needed help dealing with mom’s house. So he and his lady Sabiné have moved in. They’ve done a lot of the cleaning I wasn’t ready to do, and more importantly, they make the house still feel like home. People I love still live there, and when I walk into mom’s little living room, it’s not grim, dusty and depressing, but instead warm, clean, and melancholy.

My mother wasn’t a pack rat. She was fiercely, obsessively organized. This makes my task very much easier than it might have been. Yet, in eighty years of life, one accumulates things. I’ve found a packet of confederate money, a WWI german iron cross, the official seal of the school we we helped build in the early seventies (Daybreak Institute). I found my father’s wedding ring, a strange assortment of my father’s key rings and pocket knives, a beautiful silver money clip. I found notebooks of my mother’s poetry and notebooks of my father’s sketches. I found sheet music to ‘the pink pather’, which I asked Kenny to learn for me so he can play it on his sax.

I found an entire photo album of my gramma Cookie’s that reads like an eighteen year old’s facebook page; there’s a short story to be found in it, as soon as I have time to read all the notes and copy all the pictures. My grandfather was a handsome, dashing womanizer, and it’s clear gramma had set her sights on him but not yet made him hers.

I found pictures of myself, my brother; my mother in a vietnam era army field jacket that was mine in 1972, then hers in the eighties, and and now my daughter Ruby’s.

I found pictures of my aunt Penny, and pictures of myself and Sam; we looked at pictures of our weird shared childhoods and both remembered being there, so many years ago. It’s been a long, long time since she and I have talked about being kids. I think we’d both forgotten; no one else really remembers, now. Her younger sister amy, maybe a bit, but amy’s an elemental sort who lives entirely in the now, and of course her mom and mine, my father and brother, are all gone.

The process is far from done. Yet it helps to internalize what’s happened. Seeing my mother’s bedroom empty, working through things about which she always told me “take care of this when I go”. Looking at belongings of my mother’s and father’s, here now in my home, my things. It helps. Yet I still think it every day, say it out loud to myself; “she’s gone.”

It has helped a great deal to share this with Sam. We met a few nights ago at a bar in los gatos; ostensibly because I wanted to give her my mother’s wedding ring, but I think more because both of us needed to keep taking about it all. Sam told Olivia stories about her mother, and about my mother and father. She told stories about me as a child that made my face go red. She described my parents through her mom’s eyes, as ‘beatnik poets and artists’.

It wasn’t a childhood like our children have. She grew up like a gypsy, never the same place for more than a year or so. My family were the anchors for hers; the place they could always come back to, when blood family wasn’t as close. My parents were the hard drinking, pot smoking intellectuals to her Penny’s wild child hippy, part parents, part siblings.

Seeing my daughter’s reaction to it, telling stories about a childhood that was far more unique than I tend to realize, helped me put it all in context. My relationship with my mother, with Sam’s mother, our entire family history helped me get my head around the loss of our final parent.

This weekend, I bring in a dumpster to get rid of some very old, very dusty furniture, and cart away the one or two items I’m keeping. But knowing Kenny’s there in the house, and knowing Sam and Amy remember what it was like growing up as we did, helps me not feel alone in this process. There’s continuity, from family to friends, and the house is very much a living place, with music and laughter. Someone’s reading my mother’s books, looking at my father’s paintings, and feeding the birds and squirrels that were mom’s best company the final three years of her life.

Loved ones who are still here are the most valuable thing I can think of; and I need to be sure I tell them this.

how’m I doin’

One week ago about this time, I was in a hospital room, slowly dialing up the morphine drip and watching my mother suck irregular, shallow breaths. Thee hours later I drove home and collapsed in sheer exhaustion. Six am last sunday, I woke suddenly, worrying my phone was still in silent, that I might have […]

One week ago about this time, I was in a hospital room, slowly dialing up the morphine drip and watching my mother suck irregular, shallow breaths. Thee hours later I drove home and collapsed in sheer exhaustion.

Six am last sunday, I woke suddenly, worrying my phone was still in silent, that I might have missed a call. 45 minutes after that, my phone rang, with the news that my mother had slipped quietly away.

It feels like month away, already. And the prior monday, when I checked her into the hospital for what was supposed to be a few tests seems half a year gone.

How are you, is the question I keep getting asked. By co workers, relatives, by friends, by a drunk-dialing old friend who called me at one am last night.

And my answer is – I don’t know. Because most of the time, I feel fine. The sobs that hit me starting when I told the doctor ‘take the mask of’ came in waves the next two or three days, hitting me randomly and passing quickly. And then they stopped, suddenly.

It’s a hard thing to explain to those who hasn’t seen an elderly relative die. There’s no way to explain the absolute certainty that it’s time. My mother’s death was not a tragedy. It was a release, a natural ending to a life already artificially extended with medication and technology.

I’ve witnessed tragic death. Young people struck down by violence or cancer, or people still hale and hearty in old age likewise taken by disease, not the simple end of the body’s span. I was there after my brother’s suicide; a tradgendy not because of his death, but because of the tragic failure of his own mind, and the support system that should have prevented his end. But by the time he took action to end his life, that end was inevitable.

My mother’s death ended pain, fear and suffering. Her mind and body were failing, after a long life. Our bodies have a shelf-life; we can extend this with care, and with luck, or we can shorten it. My mother, like most of her generation, took up smoking when it was cool, and harmless, and she carried on that habit long after she knew what the surgeon general says. She threw the dice and said, if it kills me then, ok, but I’m enjoying it now.

But whatever we do sets the clock forward or back a decade, or two; damage done simply skews the numbers. When the expiration date comes – when the warranty expires – then the machine begins to fail.

My mother’s failure was gradual; she maintained the ability to care for herself until the last couple of months. When she hit the final cliff, it was steep, and short; and she knew she was there. She knew, and lacked only the physical strength and the mental resolve to take control of her own departure. But she made that clear, in writing and in earnest, gasping pleas for help – I can’t go on any more.

So when the doctor asked me what I wanted to do – carry on the fight, postpone the inevitable, or ease the departure, I was able to calmly issue the order. Mentally, I’d had the dialog with myself a dozen times, and know without question what both I and my mother wanted.

The tears I wept, later, after I’d left the hospital for a bit to eat and make necessary phone calls, were not over death. They were tears of release, knowing the terror I’d seen in my mother’s eyes the last six weeks was gone forever; that by the time I was back in the hospital, she would be flying on a morphine drip. Her pain, her fear, her anxiety, for the last time, would be completely gone. I wept because, finally, I know I could help her; I was no longer helpless.

After she was gone, I alternated between numb, sad, and feeling relief; the thought of her ongoing fear and misery had given me incredibly nightmares for weeks. Knowing what we’d saved her, and what we’d saved the living family ended those nightmares, and set me free in a way nothing has in years.

The following monday I went back to work; primarily because I needed something to do that didn’t have anything to do with life or death; tuesday I went to work because I found the backlog of tasks I had to be a crushing load on my co workers. So I worked the week, taking a bit of time as I needed, and sleeping any chance I got.

“I’m ok,” I kept saying; people think I’m pretending. They think I’m playing stoic tough-guy hero. But the truth is, when I say it, I feel it. I’m experiencing sadness, when I think about it, and at odd moments like today, thinking about needing to go buy mom groceries, or wanting to ask her a question about a locket of my grandmother’s with two old photos. Who are these people I wanted to ask; but no one who’d know is now left. I’ll never know who they are.

BUt the sadness, the last week, seems smaller each day.

But other things are bothering me.

I teared up today when I was listening to the school director speak at my daughter’s new school; I started thinking about my kids, and felt a wash of love and sadness and found tears in my eyes. And I’m finding I can’t seem to do anything; every single thing I did at work last week took twice as long as usual, and I know damn well I wasn’t doing it as well as I normally do.

And then there’s the fatigue. I can’t tell if it’s just left-overs; the incredible stress of the last six weeks, the flu I was still battling the day mom died. I can’t tell if it’s something new, some cold I picked up at the hospital, or teh lingering flu turning into a lingering infection.

The fatigue is absolutely crushing. And I can’t tell if it’s my body failing, or if it’s emotional. But it frustrates the hell out of me to fall asleep on the couch at three in the afternoon after doing nothing all day.

Certainly, I understand grief. It’s a bitch, grief, and I’ve counseled others through it, and gone through it myself. The universal truth about grief seems to be that the only cure is time, and that the time seems to have a normal, fairly predictable life span. INtellectually I know I’m nowhere near done with it; I’ve in fact just begun it.

But it frustrates me – things I can’t fix, things I can’t manage, things I can’t control. With the weight of my mother’s suffering lifted, with the physical responsibility for her care gone, I want to let myself feel free; I also feel an intense need to solve things left hanging. I can’t do either; I can’t quite let go on the one hand, and can’t summon the energy and mental clarity to take care of all the business and physical work that needs doing. INstead, I pass out of the couch and wake up two hours later with my face in a puddle of drool, wondering where the day went and why I still can’t get up off the couch.

When people ask me how I am, I say I’m ok; and I mean it. I just can’t tell, right now, exactly what ok means.

update on my mother

I tried to post this update from work a couple of days ago and wasn’t able to finish. And of course there it sits on my work computer, which for some reason I’m not able to get into. So again from scratch. I’ve posted fragments about my mother’s decline. In short, she’s 80, has severe […]

I tried to post this update from work a couple of days ago and wasn’t able to finish. And of course there it sits on my work computer, which for some reason I’m not able to get into.

So again from scratch.

I’ve posted fragments about my mother’s decline. In short, she’s 80, has severe emphysema from a lifetime of smoking (she stopped ten years ago but the harm was done), and is showing signs of dementia (memory loss, confusion, anxiety).

This was a slow steady decline until about the last month, when it suddenly changed. Over two weeks she went from grouchy and forgetful to completely unable to cope, so paralyzed by anxiety and so forgetful she can no longer even use her asthma inhalers.

It became clear her time living by herself was over; but we have no options there (my house is small, with no room for mom, let alone mom + nurse), and her house is in such a state of sorry disrepair that no nurse would be willing to come in. So a nursing home is the only reasonable option, at least for the short term

Of course there’s no coverage for that. She owns a home, has some investemnt income, and a pension. She has full health from Kaiser but care-taking isn’t covered.

Meanwhile, we were advised to get her in for testing so the nursing homes would know what they were getting.

Last week, they did a CAT scan (which was actually really cool, I got to see brain), took blood, and did some other testing. This week, when we went in for the results, her doctor finally decided to practice medicine, rather than business, and admit her. The excuse was blood chemistry (her long time habit of eating low sodium foods and drinking a lot of water turned against her when her over-all food intake went to near zero; her blood sodium level was dangerously low).

So monday, with Mom screaming and begging, I admitted her to the hospital.

We expect this to be just one night; but surprisingly, there is room for compassion in the Kaiser system after all, though it’s buried deep. The doctor who has her case knew he had a case that was MUCH worse than mom’s regular doctor recognized. The CAT scan shows what looks like a series of very small strokes, worsened by the terrible state of her veins from years of emphysema. Her legs are so poorly supplied with blood that it’s amazing she still has feet. And of course the sodium problem isn’t responding. It’s also, finally, clear to Kaiser that my mother is profoundly mentally ill, depressed, anxious to the point of incoherence, and completely confused. So instead of booting her after one token night, they’re keeping her for a bit, looking for anything they can do to help, and, for the first time in her life, putting her on the right meds to control her depression and anxiety.

My mother is a brilliant woman, with a genius level IQ. But one of her greatest gifts is in her ability to fool people. She’s done it for years, convincing doctors she’s fine. But she couldn’t do it any more, finally snapping, in a constant state of fear and anger with anyone she deals with at Kaiser.

I sat with her last night for several hours while she alternately dozed and then woke, convinced she was at home, or that she had to do something. I reminded her every fifteen minutes that she was in the hospital and that nurses were there, she wasn’t all alone.

This morning (Thursday), I’m waiting to hear if she’s being released, or if they’re keeping her another day; I pray for another day. The stress and lack of sleep caught up with me monday night, and I have a horrible cold, and am at low ebb with my coping skills. So if I have to get my mother out of kaiser today and move her to a nursing home, the word ‘ordeal’ doesn’t describe it. She does not yet know about the nursing home, though on some level she’s aware (in between thinking she’s home, she will say ‘i’m never going home, am i’). But I do not look forward to the conversation where I tell her she’s leaving one hospital and going to another.

I’ve been very clear with the doctors; all I want for her now is as little pain and as much comfort as possible. DNR, do not take any special efforts to prolong her life. She has nothing to look forward to other than decline. They understand, but sadly, there’s no solution for a woman whose brain is dying, but whose body fights on. So comfort is our singular goal.

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.

Portland is like…

Typically, my trip is over too soon. Tomorrow evening I fly home from Portland, into the fire and brimstone that is northern California, and back into what we think of as real life though I think if one does it right, travel is real life and work is the other thing we do from time […]

Typically, my trip is over too soon. Tomorrow evening I fly home from Portland, into the fire and brimstone that is northern California, and back into what we think of as real life though I think if one does it right, travel is real life and work is the other thing we do from time to time.

I’ve spent the last couple of days exploring neighborhoods around Portland; though I think I haven’t really even scratched the surface. My friends Bonnie and James moved up here several years back, and love it here; I rather suspect the ‘tour’ they’ve given us has been more a sales job for ‘why move up to Portland’.

Portland is a funky town; I spent today trying to think of what it’s like. It has some similarity to Santa Cruz, CA; but it’s much more a place than Santa Cruz. It also has some similarity to Berkley, but Berkley has much more sense of self-importance. It finally occurred to me that it felt a bit like Austin; it’s a college town, it’s an oasis of culture and weirdness in a largely back-woods state, and it’s a place which seems to see itself as apart from it’s surrounds. It has a dynamic food scene (today’s oddest treat; blue-cheese chocolate truffle), a somewhat unique music scene, and people on the street all seem a half step ahead of things, style-wise. Yet it’s also very much a small town, not quite so cool as it thinks it is. You can see people trying to be cool.

I like this town. I don’t, though, love it yet. I could immediately visualize living in Victoria (as I could when I was in Vancouver ten years ago). I actually pondered living in Seattle. Portland, though, I haven’t yet come to terms with. I can’t quite decide if it’s self-aware funkiness more tips the scale toward appealing, or annoying.

Either way, it’s a town I need to see more of. I don’t know why it’s taken so long to get up here to visit; the family I’m staying with are some of my favorite people in the world, and they’ve had an open offer extended to ages. It’s not that far, and I can even see coming up here on two wheels some day, if I pick a good time of year for motorcycle travel.

I still haven’t managed to get to Voodoo Donuts for a bacon maple bar, one of the key goals of my trip. I’m hoping to get that taken care of tomorrow. On the other hand, if I don’t get there, it’s one more reason to come back real soon now.

in seattle

I kind of meant to keep a running log of my stay in Seattle as did in Victoria; or at least carry on a flirt-by-flirt, firework by firework overview. I never quite got to my computer in seattle; maybe it was flaky WiFi, or maybe the lack of a decent writing surface in my room. […]

I kind of meant to keep a running log of my stay in Seattle as did in Victoria; or at least carry on a flirt-by-flirt, firework by firework overview.

I never quite got to my computer in seattle; maybe it was flaky WiFi, or maybe the lack of a decent writing surface in my room. Or maybe I was too busy by day and too beat at night.

I’ve been through Seattle a few times before, and sort of rated it as one of those ‘what’s the big fuss about’ cities. The last three days in Seattle changed my mind completely. I drove in thinking, i should have stayed in Victoria, or gone to Vancouver; I left today thinking, I want to live here.

My hotel was almost exactly halfway between Pioneer Square and Pike Place Market; it would be hard to pick a more perfect spot for a first trip. This is the corner where the Seattle Fire started in 1889.

It’s funny; my mental image of Seattle came from two sources. There was a teevee show around 1970; ‘Here Come the Brides’ or something like that. It presented 1860’s Seattle as a folksy, rustic place.

That image stuck – though I can’t recall ever actually watching the show at the time – until Seattle hit the public consciousness in a big way, thanks to Sub Pob Records and the Grunge scene. Somewhere around the same time, Starbucks started to its slow march toward world dominance.

My image of Seattle changed from from folksy to urban; like the rest of the country, I sort of noticed seattle for the first time in fifteen years or so. Trouble was, the new image was just as two dimensional as the old. What I saw wasn’t that different than the music scene in San Francisco; punk, folk and metal bands all sort of converging on a common point, fueled by drugs, alcohol and coffee.

Several years ago, I came through the area on the way from one place and to another. What I saw was horrible traffic, crowds on tourists, and not much else. I pretty much got out of town quick as I could and haven’t been interested in coming back since.

This week, I wiped out all that. Cheesy western teevee, grunge rock stereotypes, traffic and empty tourism; all gone.

What I realized the last few days is, I’d missed what made this city cool. The dynamic weather, the amazing views, the food, the culture. In one sweep of coast line, one can find two of the country’s best ballparks, storied old quarter, world-class farmer’s market, numerous museums, and thriving downtown.

Everywhere I looked there were shops, restaurants, bars, and yes, coffee houses, that were full of locals as well as tourists. People live here; the tourists spots are such because places like Pike Place Market are real, not hopped up for tourists.

I didn’t get to do half of what I wanted; I missed the Experience Music Project, I missed several restaurants, several museums. I didn’t get to shop for produce and cook (no kitchen in my hotel). I didn’t have time for any live music. On the other hand, I managed to get to Pike Place a couple of times, found a tattoo shop I’ve wanted to visit for years (Vyvyn Lazonga), toured Seattle’s underground, visited the Space Needle (something I’ve wanted to see since I was little. I saw forth-of-july fireworks and visited the Utilikilts store. I got out to see locks in Ballard, took my kids to Archie McPhee, and even managed to catch a musical with them (Aida, one of their favorite shows).

What I proved to myself is that I’d completely missed seattle last time I was here; and that I needed to spend a whole lot more time here than had this week. I liked Seattle enough that I started to visualize living here; the only things that stopped me from pricing houses were the thought that I’d just seen un-seasonably warm weather, and that the main high tech employer in town happens to be Micro$oft.

Plans for next time, though; condo, not hotel, so I can show Pike Place and then cook. And plan for much more time, so I can actually hang out.