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.

A LIVING WILL

In a world where we can backdate blog posts to our heart’s content (which is why it looks as though I’ve posted something every week for the past six years in my family chronicle), maybe it’s not so unusual to say that in some respects I’m still stuck in Christmas mode although the New Year is waning.  Every once in awhile I’ll hear tell of someone else who’s in the same boat, like the mom at my daughter’s daycare this morning who said she had a choice over the weekend of taking down the tree or washing the floors.

As for me, I keep finding little things around the apartment that should be in the designated Christmas bins in the storage tent that burgeons beside the house we’re perpetually renovating:  I stop by the homestead every few days to open a container and tuck in the odd Charlie-Brown-Christmas fridge magnet, reindeer-motif tea-towel, tiny Baby Jesus unaccountably separated from his fellow celebrants at the Nativity scene, etc.  My older daughter is still reading the Christmas-themed Archie comics that came in her stocking, and I am loath to take them away, as they still no doubt have some cosmic wisdom to impart (did you know that Jughead is actually a great dancer?--it’s one of Riverdale’s best kept secrets!)... And spread-eagled on the dining room table (not that our tiny apartment actually has a dining room--our new goal is to be back in our renovated house by next Christmas) is the Globe and Mail Holiday Crossword, still only about half done, and that within the last few days.

Back in early December, my older daughter and I were talking about the upcoming holiday, and I said, “Won’t this be the best Christmas ever, because we have a two-and-a-half-year-old who can really understand it for the first time?”

“Yes,” she agreed, “But it will also be the worst Christmas ever.”

“Why, sweetheart?” I asked.

“Because Nanny won’t be here with us.”

“Oh, yes, I see what you mean...But we will go and see her in hospital and bring her some presents on Christmas Eve. Won’t that be nice?”

“Hmm.”

She was right, of course.  Poor Mom.  There she was, stuck in a hospital bed, unable to move much or speak much.  Choking back small amounts of applesauce, a real milestone, apparently.  Using the ceiling lift, they got her up into a wheelchair for our visit.  We did bring cards and presents and a poinsettia--on a friend’s suggestion, I included gifts “from Nanny” for the girls--and (as I seem to say about everything these days), it was what it was.

Back at home, I fielded numerous phone calls from friends and relatives, all wanting to know of Mom’s condition and whether there was any improvement.  “No one would want to live like this” was the general consensus.  I am still carrying around a significant amount of guilt, A. that I somehow caused her stroke (and deprived her of her will to live) by being impatient with her care requirements when she lived with us, and B. that I made the wrong decision in having them install a feeding tube at a crucial moment when perhaps if that had not been done she could have quietly starved to death.  

“Did she have a Living Will?” another recurrent question.  No she did not, and we never had that conversation.

My husband and I promptly had “the conversation.”  Pull the plug, his verdict; I want to live, my pronouncement on the subject.  Yes, I told him, even if I am dementedly smearing my own feces on the walls, I want to live.  It’s all we have, this life.  I will cling to it as long as possible.

A few days after Christmas we got the call that Mom no longer required her feeding tube and was stable enough to be eligible for transfer to a local care facility.  A whirl of activity accompanied this transition:  anyone who has ever moved a relative into an old folks’ home (or similar place) will know.  Even enumerating all the details makes me so tired I can’t think, so I won’t list them here.

However, the amazing part of it is that it really is so much better than hospital.  I had my doubts about it at first:  the medical attention and immediacy of doctors obviously is the advantage of hospitalization--and some aspects of hospital care, including regular speech therapy, are not standard parts of care at the Lodge.  Of course, what Mom did not have at the hospital was the interaction with other residents, the recreational programming including music and exercise, the ability to personalize her room with paintings on the wall, a few pieces of furniture, linens and clothing from home, etc.  After three months in a hospital bed, wearing a hospital gown, Mom is now able to be dressed in real clothes and wheeled down to the dining room/lounge.  She has even regained some ability to speak.

We keep thinking of items to bring to her:  certain photographs, paintings, artwork by the girls, bulletin boards, a whiteboard and markers, a television.  Already that TV has enabled her to request something else she really wanted.  We spent one afternoon with her, in which she tried unsuccessfully to find the words to tell us something specific that she wanted us to get for her.  Finally, as we were leaving, she turned on the TV and there was a commercial that mentioned something about a phone number.  “Phone number!”  she exclaimed.  

“Do you want a phone?” my husband asked.

“Yes!” she said.

It’s something I wouldn’t have thought of, because her ability to talk is so limited, and she certainly would not be able to dial a phone number or anything like that.  But people could call her, of course, if we gave them the number.  So we went ahead and arranged it. Other benefits of being in the care home include access to regular pedicures, eye exams, dental work, and hair care.  One of my frustrations about the hospital was that hair care did not seem to be part of the agenda even for long term patients.  Now it happens every week!

The staff seem very friendly and nice, as do the other residents.  Some of the latter are more alert than others, it’s true--but on the whole I hope it will be a stimulus to have the other people around.  Even with all the hustle and bustle of the hospital ward, it always seemed to me to be a very isolating environment.  Mom had started out with a nice roommate, but ended up first with a crazy one and then alone in a single room.  At the care home, she does have a private room as well, but I’m confident she doesn’t spend all her time there--they seem to make a good attempt to get the residents integrated with the rest of the community.

A lot of this may be my attempt to make myself feel better about it all, since really there’s not much I can do about the situation.

Every time we go to see Mom, she cries.  I continue to tell the girls that Nanny just feels emotionally a bit overwhelmed, that these are tears of joy, that Nanny is not sad to see them.  Certainly the seven-year-old understands, but the toddler maybe not so much.  “She cries,” I heard her say when someone asked her about her visit with her grandmother.  I find myself wishing that this were not the case, but again I don’t think there’s much I can do.

I try to see all the good things that have come out of this situation:  renewed contact and involvement with Mom’s brother, not to mention all the old-time connections.  I went through Mom’s address book and sent Christmas cards (not on time for Christmas, alas) to everyone whose name had a circled C beside it, a symbol which I took to mean that these were her regular Christmas card correspondents. In writing to them, I was aware that some might not know of the changes in Mom’s life over the past few months.  It took ages! I was surprised how many there were:  about 50.  I was impressed.  In a way, this list was a testimonial to my Mom’s ability to be in contact with people, a legacy of connection.  It’s also why she wanted that telephone so much, I realized.  The cards and letters still pour in, and I read them to her each time we visit the Lodge, then carefully pin them to the bulletin board where she can see these tangible reminders of her many loyal correspondents, still willing in this digital age to pick up a pen and write to their friend.  What they say is how much she’s inspired them, how they value her involvement in their lives stretching back many decades, across the distance of time and space.  It’s such a credit to her, really.

This was the best gift in the “worst” Christmas, to have that positive feeling mingled in with all the others:  Mom, you can still impress me.

POWER OF ATTORNEY

It’s November 11.  I’ve just taken my two young daughters to the cenotaph ceremony in our small island community--we left the event early to obtain the snack demanded by the two-year-old (loudly during the remembrance prayer) and to feed three siamese cats while our neighbours are in Disneyland (“It’s not fair!” the inevitable pronouncement of my usually complacent seven-year-old)...

Now I’m back at the apartment, which we’re renting while we renovate our house--mom’s room seems somehow, though still cluttered with all of her belongings, an empty shell since she was admitted to hospital over a month ago.  On the bookshelf is the family bible, containing a card on which she recorded, three years ago when my father died, her funeral wishes.  She has chosen certain pieces of music, scriptural readings, even a guest list.  Looking through my mom’s filing cabinet for banking and other documents, I find the letters received by her mother, informing Grammy (then a young mother of two) of the grave injury and subsequent death of her husband, a chaplain serving overseas in World War II.  I heard on the radio today that the number of veterans from the second world war is dwindling--along with some platitude about the relentless march of time that will finally claim all soldiers.

I cannot imagine the anguish of receiving such news, how colossally unfair it must have seemed to Grammy to lose her husband in 1944, while others lived to return to their wives and families, to go on with the business of living their daily lives. In the wake of this disaster, she picked up the pieces of her life and became an academic in the small college town where she lived with her two young children.  I’m having enough trouble processing the final stages of my mom’s life, or perhaps I should say the initial stages of her death.  

It’s hard to keep the guilt at bay as I think of the stages our family has gone through in the past several weeks.  First, mom was admitted to hospital with pneumonia:  one day when we got home from work, she was so disoriented and incoherent that we felt she must have had a stroke. Paramedics came for a quick assessment and spirited her off to Emergency, from whence she was diagnosed with a possible urinary tract infection, then pneumonia; she was just starting to recover from the latter when she fell out of her hospital bed and broke her hip, requiring a partial hip replacement; just starting to recover from that when she contracted antibiotic-resistant VRE; then came a catastrophic stroke that left her partially immobile, and unable to swallow or speak.  

Now she lingers in a truly twilight existence that no one would choose, unable to communicate but seemingly aware of her surroundings and those who come and go from her hospital room, including yours truly.  Emails and phone calls have been pouring in from across the country, including a message from my mom’s college classmate who can’t believe all the “unfair” things that have happened; I admit I did a double take when I read that word:  after all, where and how does fairness enter into it?  

“Fair doesn’t count,” my godfather always used to say--and with particular resonance when he approached his own death from cancer a few years back.  “Only the good die young--you’re safe,” I countered.  He laughed.  This was back when I used to wish my godparents, who’d raised me through my teenage years, were my real parents.  Meanwhile, my mother and my father, both of whom devoted their lives to the service of others (a prophet, they say, is revered everywhere except at home) followed their own paths, along their own, respective, journeys.

Now each of the stages in my mother’s final journey parallels a shift in my own perceptions.  I now look back to the time when she was with us with a sense of unreality.  Even those first couple of weeks when she was in hospital, I expended considerable time and energy trying to convince social workers and medical personnel not to send her home but to place her instead in a care facility.  At one point, the social worker said, “We can’t go ahead and make arrangements for your mother’s long term care until her condition stabilizes--it wouldn’t be fair to her.”  Fair, shmair, I thought:  I just can’t take care of her anymore.

I know, looking back, that I had been feeling almost overwhelming bitterness and resentment, but couldn’t conjure up either emotion now to save my life--and would do just about anything to save hers.  Not that she seems to want to be saved!  She’s tried on several occasions, apparently, to use her limited strength to rip out her feeding tube, and who can blame her? I can’t, but it’s odd to find myself in this position.  Those phrases you hear or read--DNR, power of attorney, next of kin--they are all so immediate and real to me now.

Each new moral dilemma, predicated on the notion of what’s fair to whom, seems unanswerable:  should I contact her estranged, incarcerated ex-husband somehow? (No).  Should I stop payment on the life insurance policy she took out on him in bygone days when they thought he was sure to  predecease her? (Yes).  Should I take my young children to visit her, thus inevitably upsetting her and perhaps scarring the girls for life?  (Survey says No, I said Yes. And did.  And it was fine...).

Sometimes I think all I’m doing is buying myself time:  time to process the grief, time to say goodbye.  If someone had told me I would hold my mother’s hand, give her a hug, kiss her cheek--I would have said they were crazy...but I wouldn’t have been that polite.  Of course, politeness, like all the gentle trappings of social nicety, is highly overrated anyway.  It wasn’t politeness, or gentleness, if you ask me, that brought my mom back from the brink.  Because, really, I need to be clear.  I know I’m painting a bleak picture here, but the bottom line is that she is still alive; two weeks ago, we got a call saying she had very little time left, perhaps as little as a few days.  They would try to keep her comfortable, the doctor said.

There was the question of the feeding tube.  Unable to swallow, with only IV fluids sustaining her, my mother was in a weakened condition.  Whether she would make any further improvement was unknowable, but it seemed “only fair” to give her a chance.

I dragged myself into the hospital after work the next day, expecting the worst.

Trying (as always) to postpone the inevitable moment of entering the room, I first went in search of the woman that the reception desk told me was my mom’s new nurse:  the name was unfamiliar to me, something like Soledad but nothing I was confident I could pronounce, so I simply looked, as directed, for the one in pink scrubs.  

At last I found her:  she was standing in the hallway talking to another staff member, and caught my eye with a merry wink.  In a few seconds I had her undivided attention, and looked apprehensively into her forthright, dark eyes, which met my tentative gaze unflinchingly.  “Your name?” she barked, pleasantly.  I told her.  “Well!” she said.  “Mother is quite low.  Not much change from yesterday.  But you will see.”

The nurse shepherded me into the room, where, to my amazement, she cheerfully heralded my arrival to my mother, who lay prone but bright-eyed, propped up on her pillows (the doctor had told me over the phone that mom was virtually paralysed and pretty much non-responsive).  The nurse’s strident tone brooked no denial.  “ZEEMIN!  ZEEMIN!  Look!  Look!  Who is this?  Who has come to visit you?  Look!”  (I whispered my mom’s first name to the nurse--though hesitant to contradict her).  “Right!” she corrected herself, “RONNA! Wave to your daughter!  That’s right, wave!” (My mother waved).  “And a smile!” (My mother dutifully smiled).  As for the nurse, I could only suppose that she didn’t get the memo about comfort measures only.  She turned to me apologetically:  “Not much, I know.  But we make a start.”

At that moment, so distinctly that I could almost hear it, something inside me snapped.  It wasn’t at all like the snap at mom’s speech therapist’s office earlier this fall--the one that (as I told myself) caused my mother to lose her will to live.  That earlier snap was all about me, I think:  how overwhelmed I was, trying to care for her at home and raise my young family and work full time and support my husband while we build a house.  But suddenly at this moment, in this snap, all of that fell away, along with years and decades and a lifetime of, well, unfairness.  All that remained was gratitude that I could have just a little more time with her.

That’s all we need, just a little more time.  And I’ll use whatever power I have to prolong it.

It’s only fair.

IN LOCO PARENTIS

A former boyfriend once suggested (with perhaps more wit than kindness, but that was just his way) that if I ever wrote my memoirs I should entitle them as follows:

Grammy Was Right:  The Memoirs of a Very Selfish Little Girl

The allusion is to a comment my maternal grandmother once made that’s stayed with me all my life:  “I think you are a very selfish little girl.”  I’ve written about this before, but everything has a new resonance in light of (perhaps in dark of) my current situation as primary caregiver for my mother, whose post-stroke existence is an increasing challenge for herself and those around her.  I think she must be thinking of her own mother, my Grammy, whose life--and quality of life--extended into her late nineties (my mom is seventy-three).  My mom said recently, after yet another twenty-hours-of-sleep per day day, “I’m just like Mother was at the end, sleeping all the time.”  What she didn’t mention, and perhaps didn’t think of, was that that twilight existence, for Grammy, began a whole generation later.

As a child, I lived with Grammy, sometimes for months at a time, when my mom was working in other places, far-distant cities that seemed a world away from the rural island community of home.  I now realize (but certainly didn’t at the time) what Grammy provided for me, how close we were despite a sixty-year age gap.  At the time I couldn’t get away fast enough:  first for evenings next door at the commune where we had previously lived (yes, I lived on a commune with my mother and grandmother, strange as it sounds--but it was the seventies); then in highschool I high-tailed it into town to board with my best friend and her large, Catholic family (Grammy was the devout widow of a Protestant minister).  For years I never really looked back.

Now I look back all the time and question everything.

What was the origin of Grammy’s fateful comment, the words that have steered my fate as I try to put them to the lie again and again?  It was anything but trivial.  I was my older daughter’s current age (seven) when my father lost custody of me and I went to live with my mom and her partner at the time.  Great efforts were made to ensure I fit into my new family. A few years later, when that relationship had dissolved, my mother asked me if I would like to go and live with this man and his new partner (which wasn't actually an option).  Stupidly (but because I somehow thought it was the right answer) I said yes.  My mother, devastated, went in tears to her mother for consolation (they were very close in adult life to make up for earlier neglect--according to family lore, my Grandmother had withdrawn into her own grief for several years when her husband was killed in the Second World War).  And hence the comment.  Grammy always seemed to take my mother’s side against me--but I can’t and mustn’t blame whatever trips she laid on me forty years ago for my current angst.  

That reminds me of another of her favourite expressions:  A poor workman blames his tools.  From this I understood, and still understand, that we need to take accountability rather than lay the blame.  In short, we need to come to terms with ourselves.  

I need to figure out what’s wrong and try to fix it with whatever tools I have available now.

I have to try to at least start to get it all down before it gets me down--oops, too late--... OK, I think it might help to write something down.  I just don’t know where to start.  Do I start with the anecdote (always good for a small-talk laugh) about my inability for some reason to say the words that come so easily to my husband:  “Mom, you’ve got your pants on backwards (or shirt, or dress, or skirt).  Again.”  Now of course he doesn’t call her “Mom.”  I guess maybe that’s the reason right there. Bit of a no-brainer, really.

Or what about the time when her occupational therapist told her in my presence, at the end of July, that she really had to start trying to keep track of what day it was.  “You’re right,” my mom agreed, then turned to leave.  “Merry Christmas!”

But maybe it makes the most sense to start with my hissy-fit in front of mom’s speech pathologist last week, who suggested that I look at some websites dealing with the issue of aphasia.  “I DON’T HAVE THE TIME OR ENERGY TO LOOK AT ANY WEBSITES!” I blurted. “I AM THE SOLE INCOME EARNER SUPPORTING A FAMILY OF FIVE!  I AM RAISING TWO SMALL CHILDREN!  MY HUSBAND IS REBUILDING OUR HOUSE AND WE ARE OUT OF MONEY!  I HAVE TWO JOBS!  I WORK SIX DAYS A WEEK AND THIS IS DAY SEVEN!”

Finally I had to stop for breath and to blow my nose on the tissue the poor woman extended to me across her desk.  “Uh, would you like a hug?” she asked.

My mother sat there, impervious.  I’m not sure if she remembers that I am her daughter.  I’m pretty sure she thinks my daughters are her daughters and that I am her mother.  She never refers to me as her daughter or speaks of my childhood or even calls me by name.  Just “Mum.”

Occasionally, some well-meaning soul among the hospital staff where I take her for rehab will make a comment about how “It’s your turn now,” and I’m so tempted to turn around and say, “Well, actually, my mother didn’t really raise me.”  Not too long ago we had my younger daughter’s playcare teacher over for dinner and she said to my mom, with a wink at me, “So, I bet you have some good stories from the past--was she a good girl?”  My mom looked totally confused and said, “Yes. And her mother was a good girl too.” The playcare teacher wisely moved on to a different conversational gambit, and I explained to her the next day that a) my mother doesn’t have any stories, not because she can’t remember them but because she wasn’t there, and b) she may not be entirely certain who the heck I am anyway.

I may not be entirely certain who the heck I am either.

I certainly wouldn’t have said I was the type to have a full-blown rant in front of a stranger.  Or what am I saying?  Isn’t it the kindness of strangers that’s got me where I am today?  Even those kind folks on the commune, whom my mother legally designated as "in loco parentis," in place of parents, for me:  yes, I was sexually abused by them, but I think they really loved me.  I know they did.  And so did Grammy, despite the devastating indictment of her comment.  Even the guy who suggested the memoir title:  he loved me enough to make me take my worst fears, bring them out into the open, and have a good laugh and a good cry.  Isn’t that what I’m still trying to do now? I have been loved and nurtured and cherished in myriad ways by dozens of people over dozens of years, and here I am today:  a functioning adult, able to (regardless of whatever other limitations I may have) love and raise my own children by hand.  I know the value of love, if only because I know how devastating it is NOT to be loved by a parent.

I think what gets to me the most is people’s assumption that everything I’m doing for my mother right now (and frankly it’s a lot) is out of love.  “It’s beautiful, what you’re doing,” a kindly neighbour insisted, even after I tried to articulate my ambiguity about the whole thing.  I’m doing it because I have to, because I have no choice, because it’s the perfect revenge.  You tell me.  

It’s all become part of a vicious family circle in a household where I exist completely to serve the needs of others, an unfortunate paradigm in which my mother’s daily medication regime, my seven-year-old’s request for crepes for breakfast , my two-year old’s insistent tugging at my empty breast, and my husband’s pleas for sexual intimacy are all part of the same dynamic.  Not this on top of everything else, I scream silently.  I just can’t.  But I do. I just do.

Lately I’ve been having these romantic dreams that I know are pure escapism: I’m always in control.

Waking life is somewhat different.  Sometimes I think the only thing keeping me sane is my network of women friends whom I know will greet each complaint with the same unconditional support.  It feels a bit selfish and self-indulgent sometimes to burden them with it, but they don’t even seem to mind.  Let it out, they urge me.  Speak it out.  Write it down.  

Put it down, like the letters on a Scrabble board.  See what you can make of it all.

I keep coming back to Grammy.  It’s her influence that inspires me to keep my house in order.  It’s her strength that I draw upon--I keep reaching into that Scrabble bag and I never run out of tiles.  

It’s the seven letter word she scored in our last Scrabble game--VAGINAS.  It was in Scrabble that Grammy always said that thing about the workman and his tools--you know, if I complained that I couldn’t make a word with the letters I had in my hand.  The answer is there if you look for it.  Now I’m looking for a way out of my misery, a rescue, a saving.  A SAVING.  How anagrammy!

Oh.  Maybe it wasn’t a criticism.  Maybe it was advice.  A compliment even.  Not a complaint.

…”a very selfish little girl.”

My selfishness might just save me.

Again.