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.