One year ago tonight, my mother died.

It feels like many times longer than that; the only reason I’m certain it was only a year is by checking the death certificate.

This last year has been so absolutely brim full of business that I feel like I haven’t caught my breath but once or twice since she passed away.

365 days ago at this moment, I was sitting in a dark room, watching a heart monitor slow; waiting.

THe lead up to that night was an un-believable up curve of stress, as I watched my mother decline. I spent those last few weeks fighting with Kaiser to have them take her condition seriously, and tryinb to figure out how the fuck to get my mother into a nursing home without wiping out her small savings.

As it turned out, when a doctor at Kaiser finally took the time to look, that my mother was barely hanging on. Her lungs where shot to hell by a lifetime of smoking, and everything in her was only weeks away from shutdown, starving for oxygen, poisoned by the C02 she couldn’t fully exhale.

When we took her off CPAP machines are artificial respiration, and dialed the morphine up, it was the first time in three years that she didn’t look afraid.

“I’m so happy,” she said, almost her last words, as a high dose of morphine freed her from pain or care.

I watched her breathing slow, and resolved to stay til the end. But I didn’t make it.

She died around 6am Sunday, NOvember 9. 2008.

I don’t really know, even now, how I dealt with it. People kept tilling me it would hit me; but it didn’t, not in any huge way. There were tears, and sadness. But there was massive relief, a pressure and worry I’d carried for years, alone.

It’s only in the last few weeks I’ve been able to miss her; only as the last few items of estate business have gotten resolved that I’ve been able to think of my mother, the person, rather than my mother, the burden.

Missing her feels better than worrying; I welcome it.

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.

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.

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.