my father’s voice

My relationship with my father was deeply immature. By that I do not mean that either one of us individually was immature; though in fact we were, both of us. I moved out, for all intents and purposes, when I was sixteen; living most of the time at a girlfriend’s house. When I was home, […]

My relationship with my father was deeply immature.

By that I do not mean that either one of us individually was immature; though in fact we were, both of us.

I moved out, for all intents and purposes, when I was sixteen; living most of the time at a girlfriend’s house. When I was home, it was mostly to party with my brothers’s friends, or with my cousins who lived with my family at that time.

When I turned 18 I took a night job, sleeping all day and working til after midnight. We saw each other rarely, and I moved out officially not long after.

So when I describe our relationship as immature, what I mean is, the development of our relationship ended when I was still a teenager.

Once I was out of the house, my life went off it’s own way. I developed a career, a social life. I grew up. I made that glacial crawl from boy to man, with every mistake and triumph, every lesson in love, finance, job, every mistake with the law.

My father, though, never saw me group up. He knew me as that son who left, the one who’d visit on holidays. And I never got to know my father, the man. I only knew him as my father, the father.

My father, I know now, was a deeply cerebral man. A deep thinker. He taught himself mathematical systems; he studied statistics, semiotics, symbolic logic. He transcribed music into different keys for fun; not to play it (he had only a rudimentary ability as a musician, and no real appreciation for music in it’s own right); he did it because the intellection exercise of the system was, for him, relaxing.

When I was 19, I knew little of that, and understood none. I knew my father as an emotionally distant man, a man who was uncomfortable with teenagers. A sensitive man whose feelings were easily hurt. I knew him as a man who backed down too easily when his kids challenged him, and who never stopped thinking of them as babies.

It wasn’t an easy relationship for me; I am aggressive, argumentative, dominant, intolerant of weakness. Everything about me challenged my father. I had no respect for him; I had no idea there was anything to respect. In my brash teenage arrogance, I felt I already knew everything there was to know about the man.

There would have come a time, I think, when we’d have ‘met’ each other; when we’d gradually have found common ground and begun to listen, more than talk. We shared interests in science, semantics, logic. We shared interested in engineering and problem solving, in sports, in art, in jewelry, in language.

My brother Ian’s illness interrupted us.

It wasn’t simply that my brother was there, living with my parents for the last several years of his life. It was that my brother utterly dominated my parents life. It’s hard to say exactly why; something was fundamentally broken in the relationship. Certainly, the injury he suffered as a infant was the root of all this; my mother never in her life forgave herself for it. But more, it was the system they built around him. One in which his needs must be met, his well-being insured. In which all else was secondary to his care.

My parents were obsessive people. It’s why my father was so good at what he did; why he overcame his handicap (dyslexia) to become an expert is his field. It’s why my mother was so incredibly clever with language; she studied it every day of her life. They were incredibly organized, with filing systems I can’t even imagine building and maintaining. When they committed themselves to something, they would not let go of it. Once they accepted that my brother was broken and needed care beyond what a child normally needs, they never let go of that commitment.

Typically, when one has children of one’s own, the playing field levels somewhat. Parents relax into the easy role of grandparents; they witness their children as peers and parents. For some, this becomes a battleground, but for us, it would have been the opposite. MY mother, certainly, only got to know me as I am now after my father and brother were both gone.

Timing can be a bitch though. Ian’s decline began around the same time my first daughter was born. And my parents, with typical single-minded commitment to the role of caretaker, pushed the lesser task of grandparent aside. Later, they seemed to say; when Ian’s better and we have time.

We never had time. My brother’s care went on and on; he never got better. My father’s heart, weakened by a life of too much food, too much drink, and too much smoke, gave out under the stress. He died one morning, while I was in europe with own family.

He died without ever getting to know the grand child who was so much like him, and without he and I ever having a chance to know each other as men.

Today, I was clearing out files in what was once my father’s office, digging through decades of incomprehensible tests and papers, still in perfect, obsessive order. And I found words of my father’s, neatly filed.

I found business correspondence; letters between faculty members at San Jose State and Cal State LA. I found scholarly papers and cover letters to journals requesting consideration for publication.

I found letters to the editors of various newspapers, and a fan letter to Phil Frank, the writer of the comic strip ‘Farley’.

I found a poem or two, a number of essays, and even several short pieces of fiction.

I found my father’s voice in all this. I could hear him in my head; but not as he spoke to me. I heard him as he would have spoken to his colleagues. As he must have spoken to my mother when they were dating. I heard a strong, confident writer’s voice. A man who knows that his greatest gift is with language.

I felt as if I’d found a window into time, and could see the man – not the father, but the man that I never knew. Yet it was one-way; like a recording. I could hear this sliver of who he was, and I wanted to say, look, dad, that’s me too. You never met the man I am; you never heard my writer’s voice. You never saw me as I am with my peers, my friends, my co workers. YOU never saw me parent my children. You were gone too damned soon.

I sat on a dusty floor in the room that was once my pernets, with old type-written, hand corrected paper around me, and struggled to understand what my father did for a living; his words and obscure symbols as foreign to me as the code I write is to my children. But it didn’t matter that I couldn’t make sense of some point, debated in memos between my father and his his friend Lou. What mattered to me was the profound intellectual respect in the dialog. The confidence.

My father rarely showed his creativity and brilliance to his children. Once we’d passed the age where he could tell us bedtime stories, he seemed to lose track of who we were, and we of him. While our house held his paintings, I never saw him paint, and had no idea he could write.

There is so much there; drawer after drawer. I’ve only begun to delve into it, in all the dusty work of clearing out the fragments of my parents lives. But I look forward to something I never was able to do while he lived; getting to know my father, the man.

mouse time

It’s not the three-weeks-on-a-tropical-island I need. Or the live-on-a-sailboat-with-a-beautiful-girl I keep dreaming about. But it’s better than being at work. Tomorrow I’m taking the family down to visit the mouse, braving bone-chilling (for SO Cal) temperatures and holiday crowds. Early December is one of the best times of the year to visit Disneyland; the park […]

It’s not the three-weeks-on-a-tropical-island I need. Or the live-on-a-sailboat-with-a-beautiful-girl I keep dreaming about.

But it’s better than being at work.

Tomorrow I’m taking the family down to visit the mouse, braving bone-chilling (for SO Cal) temperatures and holiday crowds.

Early December is one of the best times of the year to visit Disneyland; the park is decked out for xmas, teh Haunted Mansion is overlaid with ‘Nightmare Before Xmas’, and Small World is re-done with enough holiday twinkle to defrost even my scroogian heart. We’ve missed the perfect window, last week; but I’m hoping poor weather and terrible economy make for less crowding.

I need a whole lot more vacation than this though. Three days off work and then I’m back home. I’m hoping for a lot of recharging in a short period, which means I need extra sugar and plenty of Pirates and Haunted Mansion.

birthdays and burials

Some years I like to do something social for my birthday. When I turned forty, we rented an entire bar, and danced to funky tunes while drinking ‘chocolate cake’ cocktails. Some years I’d rather do something solitary; two years ago I spent my birthday diving on the big island. This year, I did something that […]

Some years I like to do something social for my birthday. When I turned forty, we rented an entire bar, and danced to funky tunes while drinking ‘chocolate cake’ cocktails.

Some years I’d rather do something solitary; two years ago I spent my birthday diving on the big island.

This year, I did something that wasn’t really exactly what I wanted to do for my 47th birthday; I buried my mother.

One of the things I shared with my mother was a profound dislike of nonsense. Thirteen years ago, she and I sat in a funeral parlor in Los Gatos California, and jokeed about the oddity of the process. The funeral director didn’t know how to react to us; he attempted to maintain an air of sympathetic dignity while we discussed using a cigar box to hold Ian’s ‘cremains’, luaghing at how it would have pissed him off because he hated smoking so much. The entire process struck us as odd and silly. Later that day, we had a similar conversation at a local cemetery, this time with someone who was able to acknowledge the oddness of his profession.

Some weeks later, we would stand on the grassy lawn of that cemetery interring my brothers ashes along with a rubber Bullwinkle.

The last funeral I attended was that of my father in law last spring; it was touching to see the outpouring of love and respect, and then later to hear ‘taps’ played while his casket was lowered into the ground. Yet he also misliked fuss and bother; the ceremony was for his wife. She’s an old-fashioned lady who likes things done correctly.

My mother wouldn’t have wanted that; she would have wanted to get it the hell over with; a feeling I share. So when I sat in those same seats a dozen years later, the answers were the same. No nonsense. Cremation. No casket. No funeral. Burial of the ashes only because we already had a plot. Just the cardboard box and the most basic bronze urn.

I joked about the cardboard box, and about caskets that look like furniture, and about the idea that dead bodies should be kept fresh. But no one laughed about it with me.

I choose the day I did – Friday November 28th – because it was a convenient day. It didn’t seem like a big deal to me.

Friday was an appropriately grim, cold gray day; I stood at noon shivering, on that same patch of grass that had taken my father’s body and my brother’s ashes, in the same cemetery where my grandparents lie side by side. Four below ground and five above; myself, my wife, my children, and my mother in law, the last living grandparent.

There was incense in the air from upwind, and the eerie skirl of bagpipes from down; burials with far more fuss and ceremony than ours. And as I waited for someone to bring out my mother’s ashes, the weight of death and sorrow struck me.

I hadn’t expected the rush of tears. I’d said my goodbye to my mother when I left her hospital room three weeks before; I’d let the tears come as much as they seemed to need to, and while the idea that she’s gone still shocks me now and then, I’d expected the same sort of dull ache of sadness that accompanied planting my brother.

I had to walk away; I grieve best in solitude.

After a bit, I wiped my eyes and came back; and with a quiet economy of motion, a groundskeeper brought out a small plastic box and removed the plywood and astro-turf lid from a shaft three feet deep in the clay. I wanted to tell my mother than she was going in the ground in something that looked like it should cool a six-pack.

I took the small metal urn, and placed it in the white casket. As when I stood alone with her in the hospital, waiting for her breathing to stop, I felt as if I should have something profound to say. That night, all that came to me was ‘goodbye, mom’.

This is where those who worship something have an advantage; they know what to say. I, though, had nothing but mute silence.

The groundskeeper took out a tube of super glue and fixed the lid in place, as if he were building some scale model of a casket. He carefully wrapped a strap around the box and lowered it into the earth, and then replaced the astroturf lid.

Five below, and five above. Now we’re even.

I could still smell incense; the bagpipes were gone. My family got into the car, and I took a walk. I tried to find my grandparents raves, feeling that somehow I needed to say hello to them, symbolically let them know their daughter now shared their address. But I took a wrong turn, and wound up in a row of child graves.

I’m come back later, I thought. You’re not going anywhere.

It was several long minutes, though, before I could pull myself together enough to get back in the car. As we drove to a nearby restaurant, Ruby quietly took my hand and held it.

Later that afternoon, we went back with flowers; red cyclamen for my family’s shared grave, white for my grandparents. My mother’s name is already on the small, flat stone; carved when the stone was set a dozen years ago. Too many names for so small a stone – Jack, Ian, and Greta. The plot is full now; but I don’t want my ashes in the ground in a suburban park in northern california. When I go, I’ve told my daughters, put what’s left in a sack with a weight and drop me down into the deepest ocean depths.

When I looked at my grandparents names, carved into red granite stones, it bothered me that my grandmother’s nickname – Cookie – wasn’t on the stone. Never once did I think of her, or address her – as her given name (Hazel). It bothered me also that her place of birth had been left off. My grandfather’s stone says ‘oklahoma’; hers should say ‘texas’. And I resolved to go back and fix it, and to fix my mother’s stone, which was done in haste. My mother wanted to be done with it, and hurried the choice without me. But the stone that is all that’s left of her life needs to say something about her, more than her name and the year of her birth.

The stones left to mark our graves will sit there a generation later. Strangers will stroll through the grass, looking for someone, or just looking. Grandchildren and great grandchildren, maybe, will look for a name they’ve seen on a family tree. That final marker should do more than just carry a name; it should say something about whomever it now represents.

It’s a silly thing, but markers mean something to me; before my next birthday, I need to fix that.

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.

19/20

Tattoo for mom.

Read this entry for the reference.

 

19_20_smaller2.jpg

 

I considered various things, but mom didn’t want a fuss made over anything. Never remembered her birthday, never wanted gifts. No damned nonsense.

So here it is. As simple as I could make it. And I think it would make her laugh.

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.