ADVANCED CARE PLAN

The soundtrack of the Eurythmics’ “Walking on Broken Glass” is playing in my head.

I have to meet with mom’s social worker this week at the rest home to talk about a document that will set parameters for Advanced Care Planning.  This is a relatively new government initiative to codify the wishes of individuals for their families and caregivers.  The theory is that we should all, young and old, healthy and infirm, have such a plan in place.  Of course, you want to make this plan while you are still able to articulate your wishes--which is one of many reasons I’ve been resistant--if not openly hostile--about the process of setting this up for my mother, who can no longer speak (or perhaps think--who can tell?) coherently.

What they really want, I guess, is permission to pull the plug when and if this becomes necessary--but as far as I can tell I’ve already authorized this through other channels and on other documents.  I see this as a government-sponsored program to create more paperwork.  Do I sound cynical, paranoid?  I guess I’m just dreading sitting there with my mother and the social worker, my mother in tears, me being stoic (whatever that means), etc.  People keep telling me I need to talk to my mother about this, that, and the other thing--and I just don’t want to.

I think these people want to see us in tears in each other’s arms, forgiving and forgetting decades of miscommunications and whatever else.

OK, I guess I’m projecting my fears, my anxieties, my limitations as a human being.  I read somewhere recently that reconciliation should be freely embraced, because it costs nothing.  I can’t agree.  I think it would cost me something I can’t afford, perhaps my sanity or even just the carefully constructed sense of self I’ve fabricated over the years.

That sense of self, let’s face it, is already fracturing (I was going to say eroding but that sounds like too gentle and gradual a process to describe it).  I feel the cracks starting to fissure every time I put together a letter to send out to mom’s various correspondents, a schizophrenic exercise whereby I construct a voice that is not mine (although it could be), not my mother’s (although it somewhat, and misleadingly, does purport to be), not the family as a whole (although that’s ostensibly what is)--but instead some dysfunctional hybrid of third person and first-person plural.  Pronouns are a challenge but as an English teacher I manage (I think) to walk the fine line between logic and fallacy, between coherence and disconnect.

It’s part of a growing sense of hyper-awareness of the way in which I perceive my world.  “We all construct our own moral universe,” my sainted godfather once told me.  While I see the wisdom of those words, I believe the concept to extend beyond morality and into the realms of both memory and practice.  How else is it possible to deal with impossible situations?

This past week, as my younger daughter navigated the difficult journey beyond her terrible twos, I kept thinking about (as one does) how short a time ago my thriving preschooler was a tiny, helpless infant--and how my mom rode heroically to my rescue in the crisis that followed my daughter’s birth.  Two weeks after a difficult caesarean delivery, in which my blood pressure quite frighteningly--though briefly--crashed, I was recovering at “home” in a rustic cabin in the woods while my husband was working seven days a week renovating our house near the village in our small island community, where my mom had an apartment as well.  As a non-driver, I was truly isolated and having second, third, and fourth thoughts about the advisability of being so far away from civilization (such as it was).  

One night around 3AM, when my baby was sixteen days old, I woke to the unmistakable sounds of my husband (who suffers from epilepsy) having a grand mal seizure.  I grabbed the baby, hoping my older daughter would stay asleep, and made my way gingerly to the attic bedroom, where he lay convulsing in a pile of broken glass from the bedside tumbler.  Several minutes later he had recovered enough to recognize me as a familiar face, but was totally confused about who or what the baby might be.  When he was back to himself, within say half an hour, he assured me he felt fine and not to worry.  He even thought he might go to work later.

By 10:30, although in no shape to work (and glass shards still embedded in his shoulder), my erstwhile hubby seemed chipper enough, so (god knows what I was thinking) I went to the washroom to have a shower, leaving the baby in her cot (an Ikea bathtub).  No sooner was the water running than I heard a terrible crash and the harsh cry that typically accompanies a grand mal.  I rushed back to the living room to discover that he had narrowly missed the woodstove and that our five-year-old (who had never witnessed one of her father’s seizures before) was looking on in disbelief.  The baby was still lying safely in her “bathinette” (as we called it).

Again he recovered and said he felt fine--and again he had a seizure--this time in the bathroom.  This was now such a deviation from a seizure pattern of once every year and a half (you can do the math and figure out why I was reliving all this right now) that I called an ambulance to come and get him--and my mom to come and get me and the girls.  She drove us to the hospital in town and stayed with us while the patient was dosed up and lectured about the necessity of taking his medication more diligently.

My mom, bless her heart, spent her life rescuing people, but not usually me.  I always prided myself on my independence, a quality which struck me as ironic for a non-driver when this crisis occurred.  Nor was it my mother’s way to suggest that I change anything about myself--she was never one to give advice, but only to offer unconditional support.  Yet I know she was proud of my decision to start driving the next day, and happily sat at my side while I tootled around the island roads.  Later, when she had lost her own independence in the wake of a debilitating stroke, she made her way to the car--with help--and I drove her into her therapy appointments on the mainland.  Only once, as I sped with newfound confidence along the upper levels highway, did she tentatively suggest that I curb my enthusiasm.

Now I find myself remembering other times she bailed me out by driving me somewhere, starting with my preteen years, when she would pile five or so kids into our very small car and take us all from another small island community (where we then lived) to town for roller skating and disco dancing; more recently, driving me to my ten-years’ service employee recognition awards ceremony at work; etc.

This past Friday was my fifteen-year award ceremony, and so of course I thought about Mom and how proud she was (and perhaps still is) of my success at work.  She worked contracts all her adult life and now lives on a minimal government pension income as a result, so she praised my longtime commitment to a college teaching job that has a generous retirement plan.  

On my way to the ceremony on Friday, feeling guilty and more than a little apprehensive about leaving the kids, I hitched a ride to the downtown skytrain station with a friend (I still don’t quite have the stones to truck all the way to Surrey).  We were cruising along West Georgia Street chatting about the sandwich generation when--crash--a sudden impact from behind threw us forward in our seats and the wind and rain rushed in from the shattered rear window.  They say you see your life flashing before you at such moments, but I flashed instead on my family and the impact on them if anything happened to me.

Stupidly (and/or perhaps in a stupor), I left the scene of the accident at once, saying only, “Sorry, I gotta go.”  I wandered the several blocks to the skytrain station in the rain, realizing only as I entered the station that I had forgotten to put up my umbrella.  Once on the skytrain, I popped a couple extra strength Tylenol and hoped for the best.  My friend called me on my cell to check I was OK.  “No worries,” I insisted.

I arrived late but in time to get my award, a certificate accompanied by, and I quote, “a jewelled nametag” in recognition of my “distinguished and longtime service.”  This one’s for you, mom, I thought as I mounted the podium and shook the principal’s hand.

“How about another 15?” the principal asked.

Trying to ignore the tingling in my scalp, a psychosomatic artifact of my imagining the tiny shards of glass from that rear window, I smiled and nodded at my boss.  I’m in it for the long haul.

Maybe, as a talisman of sorts, I’ll wear my jewelled nametag to the appointment with the social worker on Friday, and we’ll head down the difficult road of mom’s Advanced Care Plan.

WAIVER

Various professionals involved with my mom’s care have required my signature on various waivers and documents giving permission for services, fees, etc. on her behalf.  It’s gotten to the point where someone will ask me to sign a waiver for something, and I’ll be sure I’ve already done it.  But no, it’s yet another waiver for something else.  The latest is something to do with an eye exam and glasses. Or was it the dentist? I can hardly keep track.  After all, I’m not as young as I used to be.

For some time now, in fact, I’ve been thinking of writing some meditations on aging for my writers’ group and for myself--maybe someday, indeed, for my daughters, who are just embarking on their maiden voyage.  I know in some indirect way as well I am writing it for or to, or perhaps just because of, my mom and what she’s going through as she navigates the impossibly difficult territory of getting older and losing so much.  What was that Shakespeare wrote about the seven Ages of man?  The baby mewling and puking in mother’s arms, then the schoolboy with shining morning face, then the oldster sans teeth, sans hair, sans eyes, sans everything?

Actually that’s only three Ages, but my memory is obviously failing me... in my old age.  I keep trying to do the Sunday crossword in the Globe to fend off mental deterioration, but I think I’d have to also be doing Sidoku, solving quadratic equations, and playing the violin for my strategy to work.  

But how about the Seven Ages of Woman: the baby still breastfeeding at age three (god help me); the eight-year-old who’s wise beyond her years (aka annoyingly precocious at times); the mom (that’s me); the grandmother or Nana.  Well, that’s only four, but now we have seven Ages in total if I add in the three for the men.  See, I haven’t completely lost it yet.  I’m keeping track of things.

Actually, aging seems to be a major preoccupation among a number of the fortysomething women who are my peers--even more so, interestingly, than for those who are older.  To tell the truth, I don’t know many women who are younger than forty these days, and if I’m honest I’d have to say that I simply haven’t cultivated connections with women who aren’t within five or so years of my own age.  I would even say it’s true that I encourage my  daughters to pursue friendships with kids whose parents are the same vintage as myself (and my husband, who’s actually a few years older).  It’s a generational thing.

When I started teaching at twenty-three, I was the same age as most of my freshman students:  we dressed the same, watched the same TV shows, listened to the same music. I wore very red lipstick, flashed my wedding ring, and carried a briefcase so everyone would know who the instructor was.  I would make some remark about my youth, “when dinosaurs roamed the earth,” and get a big laugh.  Now they laugh politely, but I can see in their eyes they’re thinking, “Yeah, she is a frickin’ dinosaur.  But a nice one. Kind of reminds me of my mother.”

My mom--I can hardly believe this--had me when she was twenty-six.  An impossible age, and my dad was even a year younger!  But that was the norm at the time--even a little on the late side, considering they were highschool sweethearts in the small university town where they both grew up back east.  Their own moms were both older--late thirties and settled into their careers (an office manager and a teacher, respectively)--when my parents were born:  now that was more than a little unusual at the time.  This is one of many ways I see myself as reliving the lives of my grandparents, as if their life patterns simply skipped a generation: my meticulousness (hubby calls it OCD), my long-term career (I call it good luck), my stability of marriage (anyone married that long would call it hard work).  Considering the homage I owe to my grandparents’ generation, I should be happy--shouldn’t I?--if someone calls me... “Grandma”?

Well, not exactly but you’ll see what I mean.  The week before I turned forty-seven, I walked into a Canada Post outlet (no, this is not going to be a story about going postal) to mail some presents to the kids’ cousins back east. The friendly, grey-haired Chinese man behind the counter started chatting with me about sending off so many parcels at once, and I explained that since my husband and I were not from BC originally, I spent a small fortune sending toys, books, and games, etc.  “Well,” he said, “isn’t that nice that you send all those gifts.  And those kids, I bet they love to get the presents from their Grandma.”  

“These presents aren’t from my mother, they’re from me,” I was about to explain--when I realized in one terrible instant:  he thought I was “Grandma.”  I choked back what would have been a sputtered and incoherent response, and settled for a smile and a nod as I shelled out $147.  Argh!

Later that week, on my way back from teaching at UBC, a kindly teenager offered me her seat on the bus. “Please, ma’am,” she said, pointing to the space she had just vacated.  Heavily laden with books and papers, and with a sore back after a long day, I gratefully accepted.  As for the “ma’am,” although I could have done without it, as the saying goes, suck it up, buttercup.  It’s so much easier that way.

But Karma Chameleon (and yes, I know I’m dating myself with that reference) has a way of balancing things out for us, and it was only a few days later when I found myself waiting for a bus in front of the Hudson Bay store downtown.  I hardly ever give money to buskers, but this guy was pretty good, and I happened to have some spare change in my pocket.  As I threw the coins in his guitar case, the busker caught my eye, smiled, and said, “Thank you, miss.”  “Miss!”

I was so excited, I texted my friend Penny right away.  “Busker called me ‘miss’!!!!” (several exclamation marks)...

“Was he blind?” she texted back.

Well, so much for Karma & co.

And yet, most of the time, and mostly because I have wonderful friends like Penny who keep me sane,  I seem to be more or less staying afloat.  I watch, with admiration, the dozens of Asian seniors doing Tai Chi in the Lansdowne Centre Mall on my way to Kwantlen Polytechnic.  A recorded chant, accompanied by traditional music, guides them through a series of careful and intricate movements:  their faces are serene, even as I bull-in-a-china-shop my way alongside them, hauling my squeaky-wheeled briefcase and clicking my officious little heels as I speed towards my work.  Their instructions are in Chinese, of course, and because the only words I know are from Szechuan restaurants and a couple of anecdotes from my students, I hear only these stock phrases, which can’t possibly be what the recorded voice is saying:

“Guy mei bow” (coconut bun).

“Guy lan” (Chinese broccoli).

“Hum sup gwuy lo” (tacky white person).

Although the odds are pretty good, if you’re a Chinese senior doing Tai Chi in a shopping mall, you will be passed by a tacky white person.  Me, for instance.

So I click happily on with my heels, hoping and (now) expecting to be offered a seat later on transit by a polite young person. I see myself walking through life this way, wheeling and squeaking along with my burdens, managing all right most of the time, finding joy where I can.

Until I get the telephone call and the emails from my mom’s church friends, concerned that she’s not happy, that there’s something really wrong, that her personal dignity is not being respected at the care facility, etc.  What the fuck?  For some reason this sends me off the deep end and before I know it I’m on the phone yelling and crying at the minister (no doubt I will go straight to hell for this when I die, no purgatory for me), and saying that I can’t possibly have the “gentle conversation” they’d like me to have with my mom to try and find out how she’s doing and what if anything is really wrong.  

“I don’t know what kind of relationship you think I have with her that you think we could ever possibly have such a conversation!” I blurt through my sobs.  (I seem to have forgotten to mention the “easy out” of this proposed “conversation,” which is that my mom can hardly talk).  “The thing is, it’s the end of the semester, and I have literally hundreds of term papers and final exams to mark over the next ten days!  Did I mention I’ve been working two full-time jobs to keep my family from going bankrupt?  I can’t possibly take on one more thing!  All I can do is visit her once a week, and bring the kids with me, and try to stay cheerful and upbeat, and sign the latest waiver. That’s all I’m good for, believe me, signing waivers and such. I can’t have an intimate conversation with her.  I can’t. I don’t know what I’m supposed to do, I don’t know what I’m...” I trail off as words fail me.  Waves of sadness wash over me.  I’m sinking.

Eventually the phone call is over, and I have a feeling the kindly and well-intentioned minister will think twice before contacting me again and suggesting that I have a “gentle conversation” with my mother.  The minister offers these words of comfort:  “We all know you’re doing your best.  It must be so hard for you; you have so much on your plate right now.  We’re all praying for you.  It’s amazing you’ve been coping as well as you have.”

“Yes, ma’am.”

Forget Shakespeare.  To paraphrase Stevie Smith’s words in a poem from 1957, I’m much further out than they think--and not waiving, but drowning.

DEGREE OF INTERVENTION

I’ve come to dread checking my home phone messages, which is how they contact me with news from the care facility where mom is housed--no news is good news, right? So I force myself to dial the access code, my heart in my throat (yes, I’ve been waking up in the night with chest pains; yes, I think it’s stress-related.  But enough about me!)

The other day was no exception.  I heard the dreaded beeping that indicated the presence of messages on the system.  “You have ONE new message. Dial 1 to retrieve your message.”  Beep. The voice in the message was somewhat garbled through a bad connection, and the effect was exacerbated by a thick accent of (to me) unknown origin.  I heard something about “this is...calling from...Lodge...your mother...gold rings...envelope...Degree of Intervention Form...Category 2A...2B...Doctor...2B...Degree of Intervention.”

My mind raced through the possibilities.

I had done the inevitable roller coaster through “gold rings”--something about her jewellry--a minor concern, really, in the grand scheme of things--to “Degree of Intervention.”  The latter is a legal form on file at the care facility, to be signed by the Power of Attorney and/or next of kin (I guess I’m both), essentially codifying a DNR (do not resuscitate) order so that one’s loved one can die a natural death without excessive intervention in the form of cardio-pulmonary resuscitation, etc.  It’s not quite that simple, though.  These forms never are. You can choose from four menu options.

I’m still swallowing the guilt of having a feeding tube installed for mom last fall, I guess. Various folks have let me know by direct and indirect means that they found my decisions and actions unconscionable.  I don’t know, I guess I was supposed to just let her starve to death, if you call that dying with dignity.

I agree her current life is not desirable.  Not only can she not talk (beyond a few stock words and phrases--she can’t make up her mind to say something and then say it) or eat normal food (most people would call what she’s able to eat, “mush”); she cries so much, it’s just heartbreaking.  Once she got on the phone to me (with the help of a nurse who then just left the conversation swinging in the wind) and sobbed for half an hour straight, trying to tell me something which I was never able to determine.  Thank god the kids were in bed, and my husband was out of town (at his own mother’s funeral--I keep intending to tell mom about this death but simply cannot bring myself to do it--seems like whenever I’m on the verge of being able to do so during a visit with her, she starts crying or wants to ring the bell for a nurse to help her go to the bathroom), so I was alone.

Another time she left a message:  “I’m calling... I’m calling... I’m calling...” times thirty.

I’ve had so much time to process all of the grief about my mother and her situation, that I seem to be reverting back to a response that characterized my feelings when she was still living with us:  anger.  I know this sounds bad, but I’m just being honest. I’m flashing back to an incident that happened on the ferry last summer and which now seems imbued with metaphorical significance.

On that fateful trip (sounds like we’re venturing into Gilligan’s Island territory here), I had gone upstairs and left my mom in the car; we were returning from her speech therapy session in town, something I crammed into an overfull schedule by sheer force of will.  The girls were waiting to be picked up at daycamp and daycare respectively. I know my motivation in taking mom to the therapy sessions was simply that this was something I could do for her, instead of what she really wanted or needed, which was simply affection.

Anyway, on this occasion, I came back to start the car about a minute before the ferry docked, and--every driver’s nightmare--I simply could not find my keys.  My mom said she had taken them from the ignition to try to open her pop can with them, but she could not remember what had happened next.  A frantic search ensued.  No sign.  In desperation, I phoned my husband to come down and bring me the spare set of keys from our apartment.  Meanwhile, the ferry attendant warned me that if I could not get off the ferry before it was time to load the cars, I would have to go back to the other side.  Flashing through my mind were the enormous complications of being unable to pick up my kids.  Taking five minutes to bring me the keys was one thing, but if my husband had to miss the rest of his workday, that would not be good.  We were already falling hopelessly behind in our house renovation--time and money had long run out.  (At least we had mom’s pension cheques paying the rent back then; you don’t know what you’ve got till it’s gone.)

Short story short, the spare keys arrived on time, and I got off the ferry OK.  Later I found my set of keys under my mom’s seat--I remember I hadn’t checked that seemingly obvious option very carefully because I could never bear to be physically close to her.  This makes me sound like an awful person, and indeed I do feel like one most of the time these days.

Obviously none of it was her fault (she was upset and confused, genuinely remorseful), which I think made my anger even worse--I did not have a focus or a means of expression for it, so it just festered, as it had been doing for the 45+ years of my conscious life on this planet.

All of this preamble is to explain that it was not because of my being such a loving and caring daughter that I panicked when I got that message.  I don’t know what it was.  I have been feeling for some time now that every time I say to myself that things couldn’t get much worse, they do.  I end up wishing I hadn’t taken it for granted when things weren’t so bad.

But back to the fateful phone call that night.  I called back the Lodge and tried to remain calm.

“Someone left a message for me, so I am just trying to clarify the situation.”

“O jess, I vas me,” a thickly-accented voice said.  Great, I thought.  But thanks to the miracle of real-time conversation, I was able to ascertain the truth.

My mother’s hands were somewhat swollen, so they had removed her rings and placed them in an envelope at the nursing station; I could pick them up the next time I visited. They had wanted to let me know particularly because the rings seemed valuable--as indeed they were.  One set was my grandmother’s (my mother’s mother’s) engagement and wedding ring in delicately-wrought gold (I’ve taken to wearing them now, and they feel as if they have always resided on my right ring finger); the other set was my mother’s engagement and wedding ring from her second marriage--why was she wearing them?  Looking in her desk at home I saw photos attesting to her attachment to a marriage I thought she had counted as being in the past.  I would not wear those rings, but I put them aside carefully.  (Though, come to think of it, I seem to have already forgotten the “safe” place where I did so--no real surprise there, I suppose, given my ambivalence about her long-ago decision to bring a repeat sex-offender into the house when I was still a teenager--to be fair, I wasn’t living with her myself at the time).  But I digress!

The nurse whom I spoke to on the phone also indicated that the next time I visited, the doctor advised I should indicate category 2B on the Degree of Intervention form, which would allow for mom’s hospitalization for a minor ailment (category 2A, which I had previously selected, did not allow for this possibility--goodness knows why I chose it, except that maybe at some level I was hoping to avoid a repeat of my previous errors in judgement, if any).  The nurse hastened to assure me that this--the request for the 2B selection on the form--was all theoretical at this point; my mother was “vine” and did not need to go to hospital at the present time.  “Vine,” the nurse assured me, no doubt responding to the anxiety in my tone of voice--the unspoken questions and answers that transcend all language barriers. “Vine.”  

I reached for the fruit of the vine (my only solace in these dark days), and heaved a sigh of relief.  No crisis.  This time.  I felt the spectre of doom receding; I felt the weight (a clunky old telephone? a car battery?) being lifted from my chest.  After all, it turned out, it was simply a trivial matter:  2B or not 2B.