The Hillhouse

The Journey of a Mother and Son

Book Two Begins March 1, 2018

The new year, thus far, has been an unrelenting game of good news/bad news. Somehow, in spite of some personal sorrows we weathered in the first weeks of January, it seemed that things in general were looking up. The Studio appeared to be crossing a line into new territory; I was starting to book events that had been on my mind for months. The time was finally here, and things were happening. I was making connections, meeting people. We were getting press – we were in the paper and on the news. Poised for some exciting things ahead. And yet, here we are today, so close and yet so far…

At this writing I am so very close to wanting to pack it all in. Forget the whole thing. Park my kid with a host family in town, move to Florida, get a gig house sitting or dog walking and just never come back. That idea is really appealing right now. No more snow, no more meals to make, no more food stamps to run out of, no more furnaces grinding to a halt in freezing temps, no more piano students cancelling in the 11th hour, no more venue emergencies, no more having to go to my mother for the money to fix it all. (At the age of 54 you’d think that shit would be behind me. Apparently not. It’s incredibly demoralizing and has me wondering if a job at Walmart might not be a more dignified situation.)

Not too long after we lost our ancient rooster Bald Mountain, an unidentified neighbor dog came through our property, killing five hens (two of whom were elders and quite dear to us) and injuring one of our laying ducks. She was hurt, but not so badly as to warrant butchering her – so we took her to the vet. Having acquired my very first credit card in the nine years I’ve lived here (when your ex leaves you holding the bag on family credit cards but you live on welfare, it makes starting over a very lengthy process) I was in a position to actually take an animal to a vet and pay the almost $200 in care and meds. A small financial setback, but our duck healed well and now stands to hatch out her own ducklings this spring. So it was a happy ending. Sort of.

As nature abhors a vacuum, apparently so too does an unused credit card balance; I found myself making an unplanned, last-minute trip (the timing and short duration of which made it unusually costly) to Chicago in order to visit an old friend who was diagnosed with a rapidly advancing, early onset form of dementia. (It’s called FTD for short, there are two links below to videos which describe the disease in more detail.) I’d told her I’d visit in the fall, then again made the promise at Christmas, and most recently I suggested a summer trip. In reality there would never be a good time to go, and it appeared that my friend as I’d known her was fast-disappearing. So I chose the winter school break, when I could leave Elihu alone for a few days without concern, and I’d be back by the time we held our Friday night dance performance at The Studio. The day before I was to leave, I came down with a fever, and during my two-day trip (the most expensive two days of my life since I moved to New York nine years ago) I completely lost my voice. So there I was, in the company of my oldest and dearest friends, nearly unable to speak, and physically wrecked. It didn’t diminish my happiness at seeing everyone, but I can’t say it was a pleasant experience. I was lucky to have the use of a friend’s car, and luckier still to experience some unplanned visits and serendipitous meetings, so at its core, it was a successful trip. Just not a very comfortable one.

And I got to spend two days with my friend, a woman who I will most likely never see again. And even if I do see her again in this lifetime, she won’t be herself anymore. Whenever my mother complains about the expense of an outing, the thinking I always share with her is that she’ll always remember the event, but years down the line she won’t remember the bill. I also had to remind myself of this over and over. Visiting a friend is more important than money. The time was now, and I did what was right, I know it. But still. It’s gonna take a few years to knock this balance down again. Yes, I am feeling sorry for myself. I’ll get over it. Just not today…

While I was visiting with my friend, on that rainy day in Evanston, Illinois, I got a call from the woman who teaches yoga at The Studio. The power in the building was off. That was strange; I’d gone to great lengths to make sure the electric bill was paid in full, that everything would run without incident during my three-day leave. But no, the main breaker had been flipped, and nothing was changing. I was whispering with great difficulty over the phone, my throat already on fire, my stress level rising as I realized I needed next to call the electric company and navigate the automated system on 10% battery, and without a voice. Shit. I bounced back and forth down the long hallway of my friend’s new downtown condo, visiting with her while on hold, then retreating to the bedroom to explain my situation to the customer service folks. After some time and several different calls, I was able to arrange for a lineman to assess the problem the following day.

The next day I also juggled personal visits with more follow-up calls; apparently no one had been to the property yet as they’d promised. And my mother, she had thrown herself and a last-minute solution into the mix in the form of a rented a generator to power the place (we still needed to find an electrician who could tie the damn thing into the main circuit board) for the rehearsal and subsequent performance. My mother was trying to fix a situation which needed much more than a band-aid approach. Missing the forest for the trees, she was trying to revive a non-revenue earning event at no small expense. She was so persistent, and I was in such physical discomfort and so unable to even speak, that countering her on the phone was infuriating. There I was, at the iconic Blind Faith Cafe for the first time in over a decade, with a waitress asking for my order, an overly enthusiastic friend trying to interpret for me, and my mother telling me I needed to confirm the generator rental NOW. I don’t relish hanging up on anyone, but there was no other out. I told my mother to CANCEL the damn generator, and pushed the red button. Done, done, done. I was in no place to keep this event together. Even if I hadn’t been sick, I was 900 miles away. Not a good idea. I don’t like giving up, but sometimes ya just gotta wave that white flag.

Before I’d gone to Chicago, I made sure to have my hair done. Karen, the woman whom I was going to visit, had been a very talented hairdresser, and if she would resonate with anything at all, it would be my hair. So I had my regular hair gal Wendy pimp my ride. The highlights were over the top, the curls beyond natural and the lift almost 80s music video ready. I wasn’t a huge fan, but it wasn’t for me anyway. I was thrilled that Karen loved my hair. I was thrilled that she was still recognizable as herself. And I was thrilled, that after an eight year hiatus, she and I and some dear friends were going to meet at a restaurant we’d been going to together for over twenty years. Old home week was on. It was why I had traveled so far…

I was the first to arrive at the place, and somehow it seemed different. Ah, but that’s what nearly a decade can do, I thought to myself. Shortly before we convened at the weary-looking table we learned the reason: only four days earlier our pals Tony and Vatsana had sold the thirty-year old business. If only I’d come out a week before. If only, if only…. All we could do was laugh. Poor Karen, who partly due to her condition, partly due to the anticipation, had been repeating “Crispy Basket” all afternoon, continued her refrain, only now it took on the tone of a small, sad child. “No more Crispy Basket” she said, laughing, but still sounding rather pitiful. In the end we all had to laugh. The whole situation was ridiculous. No more Panang Beef the way only Vatsana ever made it. And the cucumber salad? There was no redeeming it. The magic was gone. I couldn’t help but think how this was one of those defining moments in all of our lives. One of us was on a fast-track to death, none of us was looking any younger, and never again would we gather together around a table, all of us together.

Karen was still able to have a laugh over her situation, and by the end of the night we had created a new ‘in’ joke which would surely last… She and her sister Debbie had recently gone to the hit show Hamilton and during intermission they’d gone to use the bathroom. This was before either woman was aware of the extent to which Karen was prone to wander, and by the end of intermission, when her sister was nowhere to be found, Debbie sent her a text. “Where are you?” she asked. “I went to use the bathroom” Karen texted back. “Where?” her sister asked, to which Karen very matter-of-factly responded “Target”. Apparently, finding the lines too long, she had meandered outside and down the street, ending up at nearby Target store where she used the bathroom and then dutifully waited outside for her sister. And so for the rest of the visit, a trip to the bathroom was referred to as “going to Target”. Good to be able to laugh about it. It’s a frightening enough situation to warrant tears, but what good would it do to cry?

“I just want to know if you’re worried, if you’re stressed. How are you feeling? Are you scared?” Although I’d intended to get a little deeper into my inquiry of her experience, that was as far as I got. “Liz, do I look stressed? No, I’m not stressed. I’m not scared. It’s just weird is all.” We talked a bit more about the strangeness of it. I was secretly relieved that the very disease itself had robbed her of the ability to fully comprehend the severity of things. She had taken on a certain childlike quality which seemed to take the edge off of her reality. Karen was in a bizarre place to say the least; she would warn me of her inability to filter her language and impulses and ask me to intervene. She knew when she was about to approach a stranger with an inappropriate question, she knew when the impulse to chew something grew too strong and so her teething toy needed to be within reach lest she gnaw her debit card beyond use (which she did while I was there). Again and again I asked if she was scared. I didn’t want to lead the witness, I just wanted her to know I would be there for her as best I could.

“You’re such a country girl” Karen would say many times that afternoon at her apartment. She’d laugh at my wide-eyed assessment of all the change that had taken place over the past few years. Lyfts and Ubers swarmed all around us on the streets and appeared like tiny bugs on our phones, ready to drive us across town without so much as a bill passing hands. People were everywhere, lobbies were huge and involved falling water. There were crazy themed restaurants everywhere, and there were as many brown people as white. It was probably a good idea that I’d taken this trip. My little cocoon in upstate New York did not present an accurate glimpse into modern urban life. “Yeah, I may be a country girl, but you’ve still never ridden the el!” I joked back. Indeed, my friend had been a real Jewish American Princess, complete with a two seater sports car and folks who wintered in Boca. “Yeah, but you’re still such a country girl”. Karen always had to have the final word. I remember thinking at that point that she was probably right. This was not a world to which I would choose to return.

We spent a rainy Wednesday afternoon inside her beautiful new condo with its floor-to-ceiling glass walls watching TV, playing her keyboard, singing and looking at photos. She was adamant that we go across the street to World Market and pick out the perfect frame for a photo I’d sent her of my father and her at the piano in our old Evanston home. Karen loved my dad. And he had loved her. They flirted in French and cracked each other up. “I kiss everyone goodnight, like this” she said, kissing her index finger and placing it on the photos of friends and family members that sat atop her bureau. “We need to have Bob up there.” By the end of our day together, a beautifully framed picture of Karen and my father rested among all the others, and we were both very satisfied. I couldn’t think of a more perfect ending to our visit.

The afternoon finally turned into evening, and although the previous incarnation of my friend would never have admitted to such a thing, this woman told me several times that she was getting sad as my departure grew closer. I was too. Never a good time for goodbye, especially the kind that truly might be the last. But thanks to my true and spazzy form, the poignancy of our goodbye was somewhat diluted; once by my returning to leave her my CD, and secondly by a crazed digging through my bag to find my hat – which was loud enough to have Karen open the door and check on me. Finally, when the elevator arrived, she turned and closed the door without waving. It wasn’t really goodbye, just see ya. Better that way.

The el squeaked its way through old, familiar neighborhoods. Nighttime was always a good time to ride the train. Lights sparkle everywhere and interiors become tiny tableaus. I’d noticed on this trip that apartments were all becoming so über hip. Growing up I remember shabby apartments, one after another. Now it seemed that the entire city was made of upwardly mobile thirty-somethings. On the train another adult also unable to censor his speech appropriately made a loud observation which made me laugh: “I’ll bet the train will lose a whole bunch of millennials at Belmont”. There sure did seem to be a lot of em.

I’ve always loved to fly, so this rare opportunity to experience commercial flights again had become another great disappointment; on the way there the entire flight had been above the clouds, and my seat was on the aisle. Upon returning, I found myself in a middle seat, which might have been fine, only there was no window at the end of the row. In all my years of travel I have never before been in a windowless row. My head cold made the ascent the most miserable I have ever experienced, so it really didn’t matter anyhow. This trip had been about seeing my friends, and that had been accomplished. The quality of my flights wasn’t really the issue, expensive though they may have been.

The two-day whirlwind of $12 airport beers, visiting old friends and eating out at favorite restaurants was done. I relished the final moments of the flight, the landing, the awesome power of the engines braking the craft. I savored every moment I was not yet back. A horrible feeling of dread filled my gut when we turned the corner and I saw the lights of the tarmac. The detour was over. A muddy driveway piled high with a winter’s uncollected garbage, a fourteen year old boy who needed to be fed, and a venue without power awaited me at the end of my eight-hour commute.

It’s been one week tonight since I got back home, and shit hasn’t stopped. Still need to cancel a few more events, have yet to ascertain how and why the power cut out, and my poor kid has been really sick for the past two days. I just got the dishwasher repaired with the last remaining available credit on my ‘new’ card, and all but three piano students have stopped taking lessons. But there’s been good news too. Not without a hitch, though…

A very nicely produced piece on The Studio appeared on the local news only a few days after we lost power, and here the irony continues. Just the day before it aired I had discontinued my cable service in order to save some money, so I wasn’t able to actually watch it live on TV from my house. Oh, the timing. And the piece itself is lovely; it pays a very sweet tribute to my dad and to my mom, it shines a bit of hope on the future of the venue, but sadly when they’d come out to interview me I was at my annual heaviest, and on camera I read like Ann Wilson in the early 80s. Deeply embarrassed, I’ve had a very hard time seeing the generous shares and comments in the Facebook world. I can’t bear to watch it ever again. I need a serious do-over. I’m down eleven pounds since the interview, and my personal goal, if nothing else, is to establish some online video presence with some short music vids to help redeem myself. I’m very nearly on the bottom of my personal barrel right now. So not where I imagined myself to be in this new and until now, promising new year.

Entropy. My kid likes to remind me that’s the direction we’re all headed anyway, so don’t sweat it too much. It is kinda like the great playing field-leveler. Yeah, we have our glory years (if you’re anywhere from 20 to 40 as you read this, consider yourself in the undeniable sweet spot) but then the physical shit eventually hits the fan. I’m almost at peace with that idea. Certainly closer than a year ago. I’m slowly acquiescing to my mortality. It feels as if I still have a small chunk of work yet to do here on this planet; the kid’s not fully launched yet, and I do have a vision for The Studio which at the very least I’d like to see set sail before I’m done, and yes, my ego would like to see the blog turned into a book. (However I’m wise enough to know that nobody truly cares. And please, don’t protest, I get it. I sat next to an author on the plane who provided me another reality check on that count: I gave her what I thought to be a pretty compelling elevator pitch, and she just smiled and said “Everybody has drama, and lots of people write well.” Nuff said.)

“Your fingers are freaking me out” Karen said as she stared at my knobby distal joints. “Yeah, I really don’t like having arthritis this bad” I had responded. A moment passed. Karen looked at me, and she seemed tired. “I’d rather have what you have.” Another space landed between us. “Yeah,” I answered. “I know.”

Guess it’s time to quit griping about all the stuff I don’t have, and instead, concentrate on all the things that I do have. I guess it’s time to start writing that new book…

 

Link to WNYT Channel 13 piece on The Studio

Link #1 to shorter video on Frontotemporal Dementia

Link #2 to longer video on Frontotemporal Dementia

 

 

 

 

Sunrise January 5, 2014

We’re lucky here at the Hillhouse, to see the sun rise from our kitchen and living room windows. It’s interesting to track the changing spot on the horizon from which it lifts; just a week ago it was a tree or two to the left, but now it’s marched along the rim of the forest a surprising distance. It’s funny the way the heavenly bodies move, imperceptible as one watches, quite noticeable when one does nothing but turn away for a moment and then look back again. All day long the sun makes her progress just like this, slow, steady, never stopping. Like a willful, living creature, diligently keeping to her task, dedicated only to that one singular movement. What a contrast is the peace and stillness of a sunrise to the frenetic cauldron of action and emotion swirling around far below it on the surface of this globe. A sunrise is deceptive: it leads one to believe, if only for a second, that everything everywhere has taken a pause, that nothing at all stirs upon the earth… that all is, in this very moment, perfect and right with the world. 

Yeah, I like the sense of peace that I get from a sunrise. The sense of possibility. The best possible feeling of what it is to stand here, as a human, witnessing. But it doesn’t always play out that way. When I awoke today, the sorrow I’d forgotten in sleep had come to wrap itself around me again. As I looked out the window, I saw that all the trees were bathed on one side in a deep magenta, a sign that this was the moment. I went to the living room in time to watch the sun as it lifted free of the treetops and burst its rays over the countryside. This one particular moment of a sunrise is an interesting thing; it isn’t always the moment of joy and peace that one might think. For me, it seems to heighten whatever mood it is that I’m already feeling. On a brilliant summer morning, with the promise of a full and rich day before me, my chest fairly bursts at the sight. But today, a day on which I remember again the intense sorrow of losing my father, and with him all the questions I never thought to ask, the sun wrenches it all out of me all at once, and it hurts. Soon my face is covered in sunshine and tears.

It occurred to me shortly after waking that tomorrow is mom’s first birthday without dad in fifty-four years. They, as some readers will remember, shared the same birthday. My heart sinks to my feet. What can we possibly do to make it easier? See to it that she keeps busy, I suppose. Maybe we should go to that Weight Watchers meeting after Elihu’s bass lesson. Maybe that will help. Maybe we can stop by, maybe we can bring a bottle of champagne (that would’ve had my dad clapping his hands in happy approval). Maybe we can have her over here for supper. Hell, I don’t know. What to do? My heart breaks all on its own, and now it’s breaking for my mother. Crap. There is never a good time for goodbye, no matter how full and rich a life may have been.

All morning I’ve been remembering my father’s friends that have gone before – and there are a good number of em. In fact, there were very few folks from my father’s world left – and in terms of a physical presence in his life, essentially there were none. I thought back to the last time dad had been to the farm. It was this past July, and it was Martha’s 86th birthday. I remember on that day dad had been speaking in a nonsensical way, that he had once again turned a corner. But that didn’t lessen his pleasure at being there; he was happy, a soft smile on his face the whole time (in spite of the temperature in the kitchen reaching up into the high 80s). I had known it even then; after nearly fifty years of sitting in this kitchen, after hours and hours of drinking, smoking, storytelling, cussing, shouting and laughing, this was the very last time dad would be sitting in this space. The last time he and Martha would be in the same room together. (As it turned out, they would have one final visit with each other in person. They were both patients at the ER at the same time in late summer, and I had thankfully snapped one picture then.) I watched them, both at the farm and at the hospital, knowing in my heart that these oldest of friends were saying their last goodbyes. I also realized neither one of them was even aware of it. I guess one just kinda tends to feel as if nothing will ever change. That things, somehow, will always be thus. Silly humans, we.

At the time of dad’s death his functioning life had long since ended.  Dad had no life outside of his home, no pressing endeavors to attend to, no ability to play the harpsichord – nor the piano, no ability to walk outside on his own, no car to drive, no ability to read, no social life, no old college chums to call and check on, no pals from his former lives to chat with…. He had nothing at all but mom, his cats, the opera on the weekends, and the tv. (Yes, he had Elihu and me too, but we were only there a few short visits a week.) And I suppose a few years of this life might eventually grow tedious, no matter one’s lack of abilities. Dad was still very much aware of his surroundings, and as familiar and comfortable as they may have been, at some point I guess there’s not a lot to hang around for anymore. I can’t help but remind myself that it’s really only us we’re sad for; a quick recounting of all that dad did not have in his most recent life helps set me straight. Wherever he is – or is not – is just fine for him. It’s us that’s the problem. Actually, it’s mom that I’m worried about. How must it feel? Seriously, how must it feel? I’m sad, Elihu is only sad in passing, but it’s mom I keep thinking of. Tomorrow, this first birthday in over half a century without her mate, this will be a landmark. She’s just gotta get through it.

Life marches on, enough distractions for us that dad’s death is somewhat tempered. I still have loads of new music to learn (and the arthritis in my fingers worsens almost daily). I still haven’t told Elihu that his beloved teacher is leaving. Waiting til the last possible moment, as not to spoil his final day of vacation. And thankfully the temperature outside is going up, so we won’t have to worry about bringing the goose into the kitchen overnight as we did on Friday, when outside temps were ten below. Ironically, shortly after we saved the goose from losing his little webbed feet to frostbite, we ourselves ran out of heating oil. ! Must remember that in terrible cold like this it takes a bunch more fuel than usual. See? Lots to keep us going, many new dramas appear on our horizon. Just like the sun on its  never-ending path, the events of our lives march tirelessly onward, sunrise to sunset and all the moments in between.

 

Year Anew January 1, 2014

Some folks have been complaining about 2013, bidding it good riddance, speaking of it with various expletives and such. My first response is to think something like ‘damn right, this was a painful and terrible year, hell with it’…. but then I realize, bad things happen every year. Good things too, and if I take the glass half-full attitude, I realize that the old year wasn’t, in my own personal world, half bad. That my father died in 2013 doesn’t make it a bad year. It makes it a precious year. One in which I enjoyed all my final moments with him, one in which I had the honor of witnessing his death. That is no small gift. Yeah, the past year has been rich, full and good. (That being said, I’m still ready for a new one.)

It’s the weight loss season again, and so I begin to do a little review of 2013 and my advances – and retreats – on that front. I’d started last year on the crazy Atkins diet, and while it was successful, and I ended up looking pretty good for my 50th birthday and subsequent trip ‘back home’ to Chicago, by the time fall came, and with it home-made apple pies and fresh home-baked bread, I let it all go. I knew I was begging trouble, but it was a quality of life thing for me. I’d had it with eating nothing but meat, cheese and vegetables for the past six months and I meant to enjoy all I’d missed now. I realized I may have gone too far in ‘catching up’, but some little voice told me ‘screw it, you made your goal, now live’. And really, in that time and place I wanted to be there. Joining my son every night, sharing the same menu and this time having home-made dessert. I’d never baked bread before in my life, so the discovery in fall of 2013 that I could do so – and easily – without even so much as a loaf pan – that kinda blew my mind. And once you’ve made it, you feel you gotta eat it. There’s only so much that two people can eat though, and it’s hard to enforce portion control when there’s always more on hand. And so I ate. And then with the stress of a bigger work load, plus my dad’s decline and death, I ate to soothe myself. And while that tiny voice told me I needn’t eat quite so much to make myself feel better, I did. I knew full well it would come to this, and it has. I am back to exactly the same weight as I was one year ago today. Almost twenty pounds are back. Which means that I saw my body change by forty pounds. Yeeks. If I think too long about it, or catch a glance of my pudgy jaw line in a mirror, I want to weep, to sink into despair. Cuz I was there, goddamit, and now I’m back. But that’s ok. That is what New Years are for. Starting over.

Over the past year I’d been very intrigued with death and dying, too. Scared shitless of losing my father, and wondering what exactly it was that a person’s natural death looked like, I’d gone on YouTube binges that would freak many people out. I watched embalmings, assisted suicides, cremations, interviews with people who knew they were dying. Anything and everything so that I might better get what it was to witness a loved one die, and then make those after-life decisions none of us ever really talks about. I meant to demystify death. I’d read my share of Elizabeth Kubler Ross years ago, but never did click with her old-school language. ‘Yack, yack, yack’, I remember thinking. Let’s get down to it, lady! So in 2013 I began to read more on near death experiences – something I’d known about for years, but had begun to read now from a new perspective. And when my own father began to point towards the corner of the room, asking me who all those people were, and when he told me he saw my cousin, and that he missed his mommy, I was glad I’d re-read the literature on this experience. I do get that many folks think these end-of-life occurrences are merely the brain playing tricks on itself in the final moments of life, however I certainly do not. Me, I know that a soul is what animates a body, and quite simply, it has a separation process to undergo at the end. And while I would never had dared to speak my opinion on this subject so candidly in the past, now I feel I can. I’m off that hook – I’ve experienced it myself, I know. And I’m not quite as afraid of death as I was. The loss is still so very sad, and I can see it will continue on…. But having been with my beloved father during his transition has helped confirm for me what I already believed. So now I go into my own future, and move closer to my own death, with some important questions resolved.

My son’s now approaching an age in which his entire outlook on the world will change and mature. Ten now, eleven in a few months, 2014 will likely be the year in which the true magic of childhood ends. Santa, the birthday angel and the Easter Bunny won’t be visiting after long. Even in the cocoon of Waldorf, he will soon know for sure. I’m as ready as I’ll ever be. I’ve savored his small years, even documented a few of them here on this blog, so I can’t feel that I wasn’t present for them, or appreciative. I was. As I write this, he’s sleeping in, catching up after a whirlwind visit to Chicago and dramatic return. Over his visit, and while I was sitting vigil with dad, Elihu was going through a pretty big health scare, having visited the emergency room for knees that had blown up so they’d awoken him in the night – he said it felt like knives – and being told it might possibly be juvenile onset arthritis. Or Lyme disease. And in that I myself had fretted all fall over the Lyme v. growing pains debate – only to be told by nurses and moms alike not to worry (!!) – I kinda knew. And what relief that it was Lyme and not arthritis. So we’re dealing now with that, and the stock regimin of antibiotics to follow. (I am just kicking myself because I really did suspect it but caved to everyone else’s opinion.) Mom, Andrew, Elihu and I went out to dinner late last night (he had his favorite escargot and frogs’ legs) and we were very late to bed. Now he’s sleeping like a teenager, and deservedly so. But what he doesn’t know is that Santa made one final visit to us here at the Hillhouse last night. He even knocked some of the ashes out of the fireplace as he’s done before. Santa knows that it’s the eighth day of Christmas. He knows Elihu is back home. As I sit here and write, I’m keeping an ear out for his bedroom door, for the footsteps, that momentary pause…. He’ll run in to get me, and I’ll be sitting here in my chair, unawares, and then he’ll tell me, with a look of amazement on his face, that Santa has come! Yesterday, when Elihu asked me if I though Santa might come here, I took on a somber tone and cautioned him not to be disappointed, after all Santa had already been to Illinois. But look! He made it here after all! This is a Christmas I will savor, because by next year it will be brand new territory.

Ah, such ambivalence I feel for brand new territory. I listened as my elderly father expressed his longing to be back in his childhood home and wondered to myself, where exactly, do our hearts consider to be true home? Is it the home and hearth of our tender years – or the home we made as young parents to our own tiny ones? I suppose there’s no one answer. But there is one truth for us here on earth; time continues to move forward, and our situations, though they may appear to pause in time at different stages of our life, continue to evolve and change. A sorrow and a blessing. A missed memory and the happy anticipation of a new experience. They exist so closely, these disparate conditions, and they tug our hearts in such different directions. I can’t say that I’m thrilled with the march of time, but I also can’t say that I don’t want to watch my son grow up and one day create a family of his own. I admit it, at my age, and having seen what the end of life looks like and knowing I’m closer to it than I am to my youth, I’m not moving into the future with the zeal that I once did. I’m moving toward it with a more measured approach. It’s coming no matter what, but I’m not running to meet it anymore. It’ll be here – and gone – soon enough.

 

Process: Day One December 29, 2013

It’s been just about four hours since my father died. I have already experienced a strange variety of feelings… they fade in and out, they linger, they twist and change, and then depart, leaving me unsettled and unsure of anything. One minute I think I have a handle on things, yes, I get it, it’s ok, I feel invigorated even; dad is free and he knew we all loved him, all is as it should be… and then seconds later I feel a dark sort of terror sucking me in, telling me that this is but the beginning of unending, lifelong heartache that will never conclude. The sort of horrifying truth that leaves your chest empty of air and has you crumpling to the floor in profound despair…

And on top of this, there’s now another new and strange brew of bad feelings beginning to emerge, and I don’t like it. Why and I feeling like this? Where is this coming from? Everything about my father’s death was exactly as it should have been! It was all and more than we could ever have hoped for! And yet here they are, sneaking their way into my psyche in spite of my knowing better: guilt and regret. My gut begins to feel sick, truly nauseous, and there is a low rumbling of dread building by the second. So many things I had wanted to talk with him about – but I stop myself. I couldn’t; being a single mom of a kid allergic to cats made it difficult, plus mom was always there. (It was nearly impossible to speak only to him without constant interjections from mom when she was within earshot.) Then I remember those years when she was away at work and I had NO job and I still never went to him, recorder in hand…. Ich. I want to throw up. But I remind myself that I did what I felt comfortable with. Given the same stretch of history to do over again, I’d probably do the same again. My father and I, while we clearly shared a very deep love for each other, we did not have the greatest success simply talking. I did ask him questions, and I do have some stories, and some answers. And they will have to be enough. I counsel myself away from the path of guilt and regret, and I’m able to feel a little better. But still, they lurk. My stomach reminds me.

Just a couple of hours before I’d felt surprisingly ok as mom and Andrew and I moved about the kitchen, chatting and even laughing together as dad lay, dead and gradually losing warmth, in the other room. We’d made it through together. We’d done it. For a few minutes everything seemed clear-cut and simple. We’d each had our sobbing breakdown, but we’d pulled out of it before long. And now we were in the kitchen, almost as if nothing had happened. Wait, wait, hold on a second – what just happened here? Wait, where’s dad? Whoah – oh no, oh shit, he’s over there. And he’s not breathing anymore. Really?? Oh my God. Is this real? Yes, it is. And it’s ok. It’s all as it should be. Hm. But wait, we’re laughing. Should we be laughing here? Yeah, that’s ok too. But the sorrow is so acute, the laughter so short on its heels. Strange.

Even after doping up on an entire sleeping pill – something that would usually knock me right out – I find that after a mere hour’s nap I am up, alert, my mind churning over and over again the micro-events of the past eight hours. It seems a blur, and my memory is already becoming fuzzy on some of the details, so I try to get a handle on the timeline. I’m concerned that I’m already forgetting how everything occurred. To begin with, I got out my date book and stared at the past week, trying recall how it was we got here from there, and so soon. I remember once holding the strong impression that dad wouldn’t go til ‘sometime in the new year’, thinking that to be yet months off… Even at Thanksgiving (all four of us were together and actually had a pleasant time, an amazing gift I realize now) if anyone had told me that my dad would die just around Christmas, I still woulda thought they were way off. Guess it was my way of stalling. No matter how much you know it’s coming, it aint the same as the real thing. No way.

After I make a little map of the last two weeks’ events I relax a bit. I have a better picture now of how quickly things happened. From mobile man sitting at the table eating toast and eggs less than two weeks ago (ok, so mom will tell you half of the breakfast ended up on the floor, a sign things had deteriorated even more from the previous day) to couch-bound dad, which would have been fine had he been able to get up and use the bathroom, but here is where he began to require the kind of care no one likes to think about. Here, a big corner was turned. And within two days of moving to his new home on the couch, the big hospice bed arrived. So he gets moved to the bed. Comfy, continuously moving air mattress to prevent bed sores and keep up circulation. Nice. Funny, you know he’s not leaving that new bed alive, but even then it’s not real. You’re just going with the flow. So dad’s in a bid hospital bed now. In your mind, you adjust your thinking til it feels ok. Normal. After all, he is still recognizable. His spirit is there – you can’t imagine anything else, can you? Likely he will live in this bed forever now. His friends will have to come to him, but that’s ok – at least he’s comfortable.

Then he will begin to move slowly in the bed, frail and without the muscle to simply turn on his side (a right-side sleeper like me, I can sympathize and so brought from home all my extra down pillows to help him achieve some variety in positions) and he will look half asleep, his eyes having that faraway look, not quite connected. But you hold his hand, you engage him, and he shows you a sign. ‘Yes! Robert’s totally still with us!’ you think, still under some crazy illusion that this is just some aberration and that in a day or two things will start to right themselves again.

And then there is that first day of the deep sleeping, and that heavy, open-mouthed breathing from which you cannot bring your beloved father back. And to be honest, he hasn’t got the strength to communicate a thing, so you can only guess how present or not he is at this point. His mouth looks so very dry, oh my God, how must that feel? While just yesterday you’d have offered him a water-soaked sponge on a stick to relieve the dryness, now that tiny trickle of water might cause him to choke. Ok, so you want him to die, but not like that! So at this point you just wait. The breathing continues, and every few hours its pattern and sound changes. You look up from your book, you glance at your mother who’s heard it too, then you softly agree with each other that we’ve reached ‘something new’, and then after perhaps leaning in to touch your father’s hand or kiss his brow, you whisper something encouraging to him and return to your reading. What else can you do? You are now in the thick of the vigil. And as a friend said to me just yesterday, “the vigil is awful’. Yes, it’s hard. And who knew it could go on so long?

Mom and I sat by dad’s bedside yesterday from two in the afternoon until he died, shortly before midnight. Now I am writing from the morning after, I’m sitting on the couch from which I can see dad in his bed just like the days before. It’s comforting that his body is still here. That just shouldn’t be; I understand he’s not present in his body anymore, I had felt it a few moments after his last breath. No magic, spiritual moment occurred for any of us really, but when a minute had passed since his last whisper of a breath we had to conclude he was gone. I looked at his face, and it seemed different. Yes, yes, he was finally dead (and as if to confirm it, a cat had meowed from his office twice at that moment). But oh how strong is sentiment, and oh how strong the pull of the familiar. I have seen wailing women in far-off countries throwing themselves upon their husband’s and father’s bodies and can remember thinking ‘dead bodies aren’t worth fussing over like that’. Furthermore, isn’t that a little, well, gross? But now it’s my daddy. And I am not for one moment put off by the fact that his body is dead. My possessive, primitive heart tells me in a panic that this is all I have left of him, and so I linger, touching him, kissing him, examining his fingers in a way I’d wanted to all of my life. Pouring over him, noticing his hair, his arms, his freckles… Please don’t forget these things, I beg my unreliable memory. The funeral home will be here to pick him up shortly. First a nurse from hospice will come and help get him into some pajamas (another thing one doesn’t think much about until the situation is upon them: what will dad wear as his body departs this plane? Are the cotton/poly blend pajamas from Walmart ok?). It doesn’t sound very dignified, but what would be dignified about wrestling his now-stiffening body into a suit? Sheesh. So many little things pop up when you’re finally here.

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The men from the funeral home finally arrived. They looked much as one would have expected, in fact it seemed a little too cliché. Funny even. In hindsight I even think the older man looked a little like Peter Sellers. I didn’t notice it then, but it’s just as well. I think humor may have its limits. Certainly there was nothing funny about this moment. There were two men, in black wool overcoats and ties rolling in a gurney upon which they would take my father out. They were wonderful; not grim at all, but respectful – and they had an attentive, gentle manner which helped us bear the action at hand. Just as they began to unfold the layers of body bag and drape, I called out for them to stop – I wanted to put on some of dad’s music first. It just felt right, I hadn’t planned it, but the air was so thin, lacking of something…. I found the cd and pushed play. Not too many years ago dad had recorded this beautiful live performance of him playing Couperin; I had recently learned from friend Ken Slowik that the piece been written – fittingly for our needs now – as a memorial tribute to a deceased colleague. Gorgeously and deeply melancholic, it gave the room an air of dignity and beauty that was entirely befitting dad’s final moments in his home.

Perhaps it was going too far – but I was desperate not to forget this scene – and so I took a short video. But I stopped it after a few seconds to be present. I watched as they wrapped dad, as they lifted him, as they zipped him up to his neck. And then I saw my mother lean over to kiss dad’s forehead at the very same time that the final passage in the music played. The timing was so uncannily perfect. Again, things had lined up in the best possible way. They then wheeled the gurney towards the door. We joked a bit about dad and mom having moved so many harpsichords in and out of the house, this process was in many ways similar. Earlier we’d shown the two gentlemen some photographs of dad and his instruments, so they understood what we meant and shared in our amusement. Shortly we were outside in the gray, snowy day, at their vehicle which sat, like so many before, open and ready to receive its cargo. Dad was lifted in, feet first, his white-haired head still visible. He was one good-looking dead man, I have to say. The hospice gal who’d last come (and helped us get him in his final outfit) remarked that his skin looked wonderful, that his coloring was beautiful. And I’d have to agree; while he began to turn a little yellowish at the end, he never looked bad. In fact, as I took one last look at him in the hearse, I thought to myself what a handsome man, and what dignity he possessed, even in death.

But we, being the Conants, had to avail ourselves of the opportunity to note the humor and irony in this final step. Through the years we’ve taken hundreds of photos of our guests departing down the long driveway. We all raise an arm to wave farewell as we watch them reach the middle, and by the time the cars are at the road, mom will make a comment about the direction in which they choose to head out. We have done this for thirty-some years, why stop now? I had the younger funeral attendant take a pic of Andrew, mom and me waving at the hearse, and as they drove away I took one last picture of Andrew and mom, arms raised to wave goodbye to dad… “Well, Daddy, guess you won’t be goin down Braim Road again” mom remarked as the big black vehicle took a left.

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It’s now the day after the first day, and as I go over my earlier writing for edits and corrections I still feel stunned. I alternate between acceptance and panic, really. One moment I’m listing for myself all the perfect things about the past two weeks – the past two months or two years, even – and I note how everything resolved itself as well as it could. So many things to grateful for, not the least of which is that dad died at home, with each one of us touching him, and knowing he was loved. But sorrow is not something you can negotiate with or rationalize; the very next moment it washes over me and I find myself weeping with a freshly-broken heart. I know that this will go on for a long time. I also know that it will lessen, and that life will surround me, distract me, fill me and satisfy me again. I hope. Cuz right now I feel that queer, wide-open sort of sad that sees no resolution, that doesn’t expect to feel entirely good and right ever again.

Elihu comes home on New Year’s Eve day, which is also my brother’s birthday. My son’s homecoming will in of itself be a gift for Andrew. That man could use a little light in his life. I’m going to suggest he come along with me to the train when I pick Elihu up. We’ll see Fareed then too, as he’s on his way to the city, and then on to London to visit with his daughter. It’ll be a brief, on-the-platform hello and goodbye, but even seeing Fareed for a quick greeting might also help my brother. Don’t know. Worth finding out. And then, we will know the greatest peace our hearts can know at this time – when Elihu is with us again. Throughout this process of my father dying I have been thankful that my son wasn’t here for this – I couldn’t have expected him to sit through a ten hour vigil. So things have indeed all worked out as well as they could have. And soon I will know the tender relief of holding my child in my arms again. I can hardly wait.

Finally, I’m done with this intense part of the process. And I can say that I’m proud of myself for it too; I’m proud of all of us who’ve lost a parent, for truly it is an initiation of sorts into full adulthood. We who live through a loved one’s death – no matter who it is who dies – are brave people. This process of being human, as I’ve noted before, is not for wimps.

Ok, one big life lesson down, I suppose it’s time to move things along. My process isn’t over yet…

 

Maestro’s Finale December 28, 2013

Robert S Conant

Robert Scott Conant of Greenfield Center, New York, passed away in his home on the evening of December 27th, 2013 at the age of 85. He died peacefully in his sleep, surrounded by his loving family and cherished cats. He is survived by Nancy J. Conant, his wife of 54 years, daughter Elizabeth Scott Conant, son Andrew Frederick Conant and also his beloved ten year old grandson, Elihu Scott Conant-Haque, all of whom live in Greenfield Center, New York, as well as nephew David Conant of Bala Cynwyd, Pennsylvania; nephew Douglas Conant of Champaign, Illinois; grandnephews Matthew and Gregory Conant and sister-in-law, Jean Conant of Holiday, Florida. He is predeceased by his father, Frederick Banks Conant, mother Bessie (Scott) Conant, brother David and niece Susan.

Robert and Nancy Conant were married at the Church of the Holy Trinity in Manhattan on October 10th, 1959, Fr. David Gillespie presiding. Though seven years apart in age, Bob and Nancy shared the same birthday.

Robert Conant was born on January 6th, 1928 in Passaic, New Jersey. His father was a judge, his mother a talented pianist. He attended Choate, where on a school trip to Manhattan to hear a concert by the iconic harpsichordist Wanda Landowska, he was first inspired to dedicate himself to the study and performance of the harpsichord. Mr. Conant went on to receive undergraduate and graduate degrees from Yale University, class of ’48 and ’56 respectively, where he would later teach as well as become curator of the Yale Instrument Collection. Mr. Conant made his professional debut at Town Hall in Manhattan in 1951. He later taught at Chicago Musical College of Roosevelt University under Rudolph Ganz, from which he retired in 1986.

Mr. Conant performed and recorded with many groups and individuals here and abroad including the American Bach Society, The Collegium Musicum, Robert Shaw Chorale, the Viola da Gamba Trio of Basel with August Wenzinger and Hannelore Mueller, the Alfred Deller Trio, Henryk Szeryng, Fritz Rikko, Paul Doktor, Janos Scholz, Renato Bonacini, Josef Marx and Kenneth Slowik.

Mr. Conant was a pioneer of the early music revival of the post World War II years, promoting the use of historically accurate instruments and tunings. Mr. Conant created the Foundation for Baroque Music in 1959, and began to host an annual concert series, The Festival of Baroque Music, the first several of which took place at the Seagle Music Colony in Schroon Lake, NY, and which later moved to its permanent home in The Studio in Greenfield Center, NY, an open-plan concert hall designed for its superb acoustics. The Festival of Baroque Music ran continuously for 52 years, concluding in July of 2011. In addition to his love for early music he was an avid supporter of twentieth century music and commissioned several new compositions for harpsichord. He received a Lifetime Award from Yale University as well as a Lifetime Achievement Award from the Saratoga Arts Council. When appearing before an audience, Robert spoke with masterful eloquence as few can.

There will be no formal visitation; online remembrances may be made at http://www.burkefuneralhome.com. The family would like to express their deepest appreciation for the exceptional level of care given by hospice workers. In lieu of flowers, friends may make donations to The Community Hospice of Saratoga in Robert’s name.

Bob entertained friends and family with his great talent for hilarious, spot-on impersonations and will be remembered by everyone who knew him for his ever-present sense of humor, cheerful demeanor and endearing smile. Robert loved all things beautiful, sonorous and poetic, and he lives on through our enjoyment of great music and art.

Please note that the link to www.burke@burkefuneralhome.com may not bring up Robert’s page just yet, as there is still a bit of paperwork to complete before he’ll be represented on their site. Visit back soon and you should be able to leave a remembrance. Thank you all for your love and support.

 

Vigil December 27, 2013

I have mixed feelings about writing a post just now, but I feel compelled to share what it is that I, and we as a family, are experiencing. Few people are comfortable talking about death, yet everyone present on this earth will themselves die, and most everyone will experience death in his or her immediate circle of friends and family. I wish it still didn’t feel so taboo, but somehow it does. Perhaps in my writings I can help to dispel some of the mystery and help people to feel more at ease talking about the subject. Not sure I can put my money where my mouth is however, because even though I may be ready for this on some level – and even long for it on dad’s behalf – I am scared shitless.

Just an hour ago I’d been at the store, hoping to pick up some produce and other staples when mom called and told me I’d better get home. Dad’s been experiencing a rattling sort of breath over the past day, and it had just gotten more pronounced. Can you imagine the feeling in my body as I drove over the pastoral roads of the countryside towards my dying father, as Bach played on the radio? The most poignant soundtrack ever, and the snow-covered countryside out my window just made it even more intense. Hold on, dad, I kept saying to myself. I was fairly confident he’d wait for me; just before I left his side I told him I’d be out for an hour or so. Each time I’ve left his side – now, for example, as I’ve run home to eat a bite and just get a little emotional breather – I’ve told him what I’m doing, where I’m going and when I intend to be back. Many folks may not believe that this will mean anything to a man heavily medicated and sleeping, but I do. And I think he’s aware, on some level, of what’s being said to him. Just a couple of hours ago he held my hand back – and I knew he was there. We have all three been with him, sitting vigil at his side, yet on and on goes the wait. So when on earth will he go? And just what is he waiting for?

Ever the humorist, I suspect he may choose to leave us at 4:15, which is the tuning for concert A in authentic, historically accurate Baroque music. Just now, when I explained that I was going home for a bit of lunch, I told him the current time. And I suggested to him that possible time of departure too – cautioning that at the very least he might not want to go at 4:40. ! Then I kissed him on the forehead, told him I loved him so very much, and parted using Elihu’s last words to his grandfather: “See you shortly”.

Last night, when dad gurgled for the very first time and choked ever so slightly on his inhalations, my entire body immediately filled with adrenaline. I was there at his side, and quickly spoke to him as soothingly as I could. I took his hand and waited. When it seemed his breathing had returned to an even, rhythmic pattern, I sat down again. I noted how very panicked and full of pure fear I was. My very body had been physically jolted as if I’d just been in car accident. It was very surprising. And alarming. Proof of just how afraid I was. And I am a person who truly believes that my father is on his way to a grand reunion – and a much more joyful, love-filled place than here. Even with this firm belief, I am still frightened to the core of that final moment. Yet I so earnestly desire to be there with him for it. I pray that I don’t miss it, even if I am petrified of its finality.

Andrew has spent the past eighteen hours at dad’s side. He must be wrecked with exhaustion – and I pray now that he’s gone to his house to get a nap in, that he doesn’t come back drunk. Christmas evening – the one day on which my mother had so dearly hoped my dad wouldn’t die – Andrew returned from Martha’s drunker than either one of us had ever seen him. He stumbled in, and plopped down at the island where we were having dinner. He picked up his stuffing and ate it with his hands like a caveman. Unable to get much food successfully into his mouth, he got up and left, lumbering out of the kitchen and down to his house. We were on the lookout for lights from his place (just at the bottom of the driveway) to indicate he’d made it. No lights were ever turned on. As I left later on that night I made sure that I didn’t find his body passed out in the snow. It was brutally cold out, and he’d left in nothing but a sweatshirt. Suffice to say, our father’s death is pushing Andrew to his absolute limits.

Mom tells me she’s told dad it’s ok to go. She’s given him her permission, so have I. Whether Andrew has done the same we’ll never know, but at least he’s had a good amount of private time with his father. That makes me feel better. So now it’s purely a waiting game. I finished writing dad’s obituary today, and in lieu of a date of death, I’d written in December 28th. Mom gasped when she read it, as if, like me, on some level she simply cannot fathom his dying. I told her it was just to fill in the blanks, but she remarked that I shouldn’t “push things”. Man, are we mixed up about this. I look forward to having this whole experience behind, and not ahead of me. What a challenge is life… and what a greater challenge is death.

Hospice workers tell us that the very final and sure signs that death is within hours are a change in skin color in the legs, feet, arms or hands. A bluish tint will occur, signs that the blood is no longer oxygenating as it once did. I’m glad to have something to look for, because dad has seemed on the very precipice of death for the past twenty-four hours. His mouth now hangs open, his breathing is deep, faster than before, and his face had truly become sallow. His face still looks like him, yet now his cheeks have become sunken and if one were only to glance at him, a person would register nothing but an ancient man. How quickly he has changed. In some ways it makes it a bit easier, for we are not saying goodbye to the man we all knew. He has already departed. It’s a wonder what exactly it is that remains. He must be hovering somewhere in a semi-conscious ether, trying to muster his last earthly courage to let go of the cord, to bid us all a final adieu.

You are loved by so many, dearest father, and you have left a grand and beautiful legacy. Please be at peace, and know that you may let go without fear, and travel to the place that calls you now. We’ll see you shortly.

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Post Script: Dad did in fact die on 12/27/13 (although legally his date of death will always be recorded as the following morning when a nurse arrived to ‘legally’ pronounce him so. We know the true date, however.) It was around 11:20 p.m. when Andrew, mom and I were just sort of doing our thing at the house. Mom at the kitchen sink, Andrew at his computer on the dining room table, dad in his hospice bed, and me on the couch with a view of all three. Dad emitted two vocalizations which where unusual in that they were focused and a bit louder than anything he’d uttered recently. I personally feel he was summoning his effort to get our attention. The whole family was there, there was a cozy, familial feel to the home and it must have been the right time. It worked; it got my attention and I called to mom and Andrew. We were immediately at his side. Now his breathing had begun to change.

Never once was there ever any discoloration of his legs, feet or arms, so our only indication that things were reaching a new phase was the breathing. Now he’d take a labored breath and wait much longer til the next. We got into our positions by his side; mom held his right hand, Andrew his left, and I held both of his feet in my hands, dancing side to side in an expression of my acute distress and fear. We all must have known this was it. The past twenty-four hours the cats had paid their visits to his bed and alerted us that things were changing, now it was our turn to sit with him one final time. We stood like this for some twenty minutes. It was apparent what was going on this time. We were getting ready to watch our beloved Robert die.

He took another deep breath and then… nothing. We all began to sob for our loss when he surprised us by sputtering to life again, taking in another breath. He went on to repeat this a few times – each time throwing us into tears, each breath having us laughing at how it had fooled us… It seemed he was taking a couple of curtain calls at the end of his life – so we began to laugh even more at the idea. It happened again, one breath, a pause, then mom, maybe sensing his wasn’t quite ‘it’ yet, began to talk about something she’d been doing before this – a cat-related item – and I shushed at her to stop talking – because it really seemed this was it! We quieted down and waited again… I hoped we’d hear another breath, but none came this fourth and final time. Having those three fake-out curtain calls had softened the departure, leaving us crying and laughing all at the same time. When we were sure a minute without breath had passed, we agreed he was finally gone. And a cat meowed twice from his office precisely at that moment as if to confirm it. I’d watched dad carefully through the whole thing, hoping I’d recognize that one final moment of departure, but I didn’t.

But when I moved in close to look at his face, I got it. Yeah, there was no one home to animate that body anymore. That thing that made the difference between a physical body and a charming, intelligent, funny human being – that ‘whatever it was’, was just plain absent. He was here just a few minutes ago. But now he was definitely gone. Nothing in between about it. Wow. Kinda nice that he had us all laughing through our tears as he left. Thanks, dad. We really appreciated it.

And we hope you’re still laughing where you are now. We’ll spill some tears here for you yet, but in the end you’ll have us laughing more than crying, I’m pretty sure of it. Curtain calls at your own death, indeed. !

Robert Scott Conant died at 11:51 pm on Friday, December 27th, 2013, and did so as peacefully as any person should ever want to go. Amen.

 

Christmas Last December 25, 2013

On a bright and sunny Christmas morning, peaceful and still in my little house, it’s difficult to imagine all that’s going on across the land at the very same moment. Living rooms are ankle-deep in wrapping paper, parents are sitting nearby, watching the chaos, relieved they pulled it off and children are awash in new toys and chocolate. Yet at the very same time hospital beds are occupied by people for whom this day is much like any other, some are just waiting, some are in pain, some are not even aware of being there. Some young women are realizing that their new baby’s birthday will be today, and some people are getting ready to watch a loved one breathe for the very last time. Yes, it’s a holiday, but everyday life does not take day off.

When I went out to tend the chickens, I discovered a hen taking cover underneath the water trough. When she tried to move, she faltered and fell. I’d seen her only just last night, on her roost and doing as fine as always. How did this happen? And what, pray tell, took place? It seemed her leg was broken, yet I couldn’t imagine how. Her back showed signs of pecking, a bare spot and a fresh scab told me that she’d somehow sunk down the pecking order and had begun to show evidence of it. Unpleasant as that was, it did not explain a broken leg. Immediately I picked her up and brought her in to the house. Likely she’d be housebound and in my care for the next week. I thought of all the folks, animal and human, whose needs continue, acute and mundane, regardless of the celebrations. My father, awaiting his death, still needed to be changed and moved in his bed, and this hen still had an injury that needed attention. I kept thinking to myself that this was a good year for Elihu to be away. Not sure how I could possibly have been present for these situations otherwise.

As I think about my son on this morning, far away and in the midst of his own magical Christmas morning, I do realize that it’s the last such Christmas that he’ll believe in Santa – already the signs have been showing over the past week – and I’m a bit sad that I’m not there for it. Yet in the end, it doesn’t really matter. While we have distinct, clearly defined holidays on our calendars, time itself is a bit fuzzy. Events stretch out over time… not believing in Santa doesn’t happen in a second, instead it’s a process. A slow calculation built upon a growing body of evidence. Likewise, a natural death does not happen all at once. It too is a process, a gradual slowing down. And while there may truly be one final breath, it in of itself is not the dying. And so I realize that I can have no regrets on this, the final Christmas that Elihu believes, and that my father lives.

All I can do is be fully present in the moments I’m given. I can take some peace in knowing that I will carry the memory of this day with me until the end of my own, and it’s in this way that I’ll make this final Christmas day last.

 

Living Wake December 24, 2013

Mom and I both said it at the same time. This evening had turned out to be – with no prior intention – a wake. The impromptu party of old friends, with tales re-told, pictures snapped and the general volume of the room increasing as the night progressed, had truly become a living wake. Had there ever been such a thing? mom and I wondered aloud to each other. How fantastic a gathering it had been, and how important for all of us. Likely there would be no such gathering after dad’s death; so this had been it. We had gathered around dad’s bed, telling stories and laughing, then gradually made our way to the living room filling in all the available seats. We all stayed much longer than I think any of us had planned. And while my father opened his eyes only once or twice in the four hours we visited, we all agreed that he had been present for the party. Stories were recounted, old photos were passed around, and there was laughter just like in the old days. (Our house had always had humor if nothing else!) And somehow, although she had not planned for it, mom rose to the occasion as ever she did in the days of yore, pulling cheese, crackers and wine out of almost-empty cabinets to continue her long-standing role as queen hostess.

Back in the days of my father’s early music festival he’d always had an assistant to help him during the summer. The duties of said intern were wide-ranging and went far beyond simply picking musicians up at the airport and manning the box office. These various and sundry jobs were the subject of hilarious tales re-told tonight, none of which had to be elaborated upon to be entertaining. And what made this all the more precious a night was that two of dad’s long-standing assistants were here: the two Jims. They are more than former employees, they are family. I’ve known them both far longer than I’ve known just about anyone, and while I don’t fancy myself an old person, the way the tales were flying tonight I think that my generation now qualifies for that category. One of the Jim’s son was also there along with his girlfriend, and I found myself suddenly very aware of how old we all sounded. As a child I can remember my own parents talking of things that happened long before I was born, and thinking them irrelevant and, well, ancient. I looked at my own father and realized in some new dawning awareness that one day I too would not only be old, but very old. Sometimes it’s more than hard to believe; it’s scary. But it’s the crazy and unpredictable stuff that happens in the middle that makes the trip worth it I guess.

If I’d wondered how my brother would fare in the face of our father’s imminent death, I had my answer tonight. Andrew wobbled in during the party absolutely stinking drunk. Thankfully everyone (save perhaps that poor young girl) knew the deal. More than that, they responded with love and compassion. One of the Jims even let my poor brother collapse in his arms as he succumbed to his grief. I’m grateful to him for understanding. This is a tricky situation for anyone, and much more so for someone who doesn’t have it together emotionally. My mother was also able to get teary, although I haven’t seen her out and out cry yet. But it’s coming, I’m sure. I found it strange, but as we were wrapping up the evening and making our goodbyes she began to cry a bit, and I didn’t. In fact, I felt almost cried out. It almost feels as if this waiting is just too much. Like I’m done already. Only thing is, I know I’m not. And I’m still so very scared.

It’s late now. And it’s Christmas Eve, too. I’m so tired. Mom must be tired too, but it’s not over yet. We’re almost there, mom I think to myself. I also think to myself that dad must have – on some level – appreciated the company tonight. He shifted positions nearly the whole evening seemingly in search of a comfortable spot, yet I’ve heard this is simply a phenomenon that happens near the end of life. And although he seemed mostly gone from the room, he was able to nod a time or two in response to a question, and had us roaring with laughter at his agreement. Yeah, I think dad knew what was going on. He’s just pooped is all. Just too tired preparing for his transition, too tired fighting this defeated body to speak, to engage. After all he’s been engaging, performing, teaching and living for eighty-five years. I can understand.

Thanks, dad, for throwing such an awesome party.

 

Delay December 22, 2013

Although Elihu was scheduled to have flown to Chicago last night, the weather looked threatening enough for Southwest to re-book him on an early flight this morning (one benefit to flying as an unaccompanied minor). It was such a welcome gift of time. Through a miraculous chain of events we went from nearly missing the new flight to being the last ones to board – to meeting the pilot. Earlier that morning I’d written a thank-you note to the pilots, one which we handed the fellow as he and Elihu boarded together. I have never once taken for granted the skill and professionalism of the people that get my son – and everyone else’s loved ones too – safely to a faraway airport. And especially on a day like today; black ice sheeting the roads as rain continued to fall and freeze all around. I suppose I also chose to write this letter today because given what I’m currently going through I have a heightened sense of how precious and important friends and family are.

Yesterday afternoon we went next door to visit dad in what was to be the first of two final visits for Elihu. While we were there my oldest friend in the world (she’d also been matron of honor at my wedding) and her family, husband, daughter and son, all came by to say hello… and goodbye. There were eight of us together in the room, visiting, sharing stories and catching up on life events. Although dad responded very little and spent most of the visit with his eyes closed, he lit up when Sherry took his hand and said hello. And somehow, once again, dad and Elihu had a quick exchange of their fake language for all to enjoy. What a deep and good feeling it was to hear laughter in the room. Dad and Elihu’s little bit was still so delightful, so hilarious. Plus it sounded so authentic that my friend’s son (a high schooler) actually guessed it to be Russian. Imagine that! Success! Those two have that certain talent, that certain thing. Something that not just everyone has. How lucky I felt to witness it one final time, and to have shared it with a room full of old and dear friends. While dad may indeed have one foot outside this reality of ours, he is still present enough to appreciate the company of friends and family.

Last night after supper, Elihu and I went over so that he could make his final farewell. Dad was markedly less present than he’d been only a day before; he was still able to speak, but so much weaker, so changed. I tried to make it clear to him that Elihu was going to Chicago for the holiday, and that he was here to say goodbye. Elihu leaned in and stretched his arms over his grandfather and kissed his cheek, telling him again how much he loved him. When he pulled away dad said something strange… “When beautiful January comes….” and he trailed off. I took it as a sign that he’d wait til then to leave us, and I pressed him for more, but nothing came. I could see that there was no point to stretching this out. This was the tidiest ending we were going to get, and sad as it was, it was time to go. I left the room first, and turned back in time to see Elihu wave, almost casually, as he said “good-bye, Grandpa, see you shortly”. I know some may think it was just a mimicked, stock phrase of parting that my son chose, but I think differently. I believe that my son knows that he will one day see his grandfather again, and in the infinity of the cosmos, it is truly nothing but the merest moment in – or out – of time.

Today was another gift, as old and dear friends made an incredibly long car trip just to see dad one last time. The man who visited, along with his daughter, is a musician who’s been a part of my father’s professional world for going on four decades. And in that time his family has become part of our family too. This was an important moment for the both of them, and while my father may not have been able to communicate very successfully, it was a necessary final visit. I turned away to give them privacy, but I longed to hear their voices in conversation. From where I stood, I heard very little. I’m sure that dad, at this point, was barely audible. Still, it was an important moment of closure. After they departed for a long return trip I remained there with Andrew and mom. I sat with dad, just holding his hand, stroking his head, rubbing his feet. He twisted in the bed, trying in vain to find a comfortable pose. He tried in vain to lift himself up to shift positions, then hollered in panic when I put my arms under his shoulders and pulled him back up in the bed. I knew to disregard this, but it still didn’t feel great to hear. But what was more frustrating was his unending search for stillness. His hands tugged and this and that, he tried to move from side to side, and eventually began trying to curl up into something that seemed on its way to a fetal position. Oh, poor dad. No amount of pillows or propping or shifting seemed to give him peace. And every now and then he’d grimace in pain and even moan as something in his gut had taken place. All I could think of was the bleeding that continued, slow and steady beneath the covers…. Was this his colon breaking down? Did this bleeding hurt or not? Was this just gas? After a few episodes of extreme discomfort mom finally administered some morphine. It seemed to help, but after another hour he was back to tugging on his sheets and writhing in his bed. Hard to watch, and it made me feel pretty ineffective.

I went home to get some rest, but just as I was sitting down I received a call from an old friend who’s parents live ‘next door’ (a quarter mile down the road) to mom and dad. This gentleman now lives in Boston, and he was here on his annual visit to see his folks. Good timing, as he’d not seen my parents now in two years, and this was clearly his last chance. After catching up a bit on the phone I suggested to meet him at over at their house. We hung up and moments later both pulled in the driveway at the same time. He was very good and gentle with dad; I’d warned him what he would see, but having been through a close friend’s recent fight with pancreatic cancer he assured me that he was comfortable with anything. He took dad’s hand, and spoke his presence, although I was disappointed to see that this time dad barely registered a response. We enjoyed a very brief visit, and at his leaving my heart warmed with gratitude and love as I saw him lean in to kiss dad’s hand. I had to turn away, this again was so real, so very sad and final. I only wish dad had been more responsive. It made me wonder, was this the way things were going to continue? Would he remain in a semi-conscious state until his death? Things had changed so much in just the past twelve hours…

So now I’m at home, catching up in this post, wondering whether I should try to get some sleep in, or if I should rally and just go back over there. I have some old down pillows I’m anxious to stash under dad here and there in hopes it might take the edge off whatever ill-ease it is that he’s experiencing, but I don’t know. I am tired. Got about four hours sleep last night, and it’s nearing seven in the evening now. I’ve been given the rare gift of time here; no more workdays for the next two weeks, no mothering duties either. My piles and to-do lists don’t matter. There is only one thing on my to-do list now, and that is to see my father off into death. I do not want to miss it. But how do we know when to expect it? When mom and I asked the hospice worker today if dad’s death was likely to happen ‘soon’ she responded fairly confidently that she didn’t think it would be that soon – as he still had some ‘transitioning’ to do. Well if this shutting down, bleeding out, sleeping all day, seeing dead relatives and uttering poetic platitudes isn’t considered ‘transitioning’, then what exactly is? Mom and I were a bit taken aback. However, mom is holding Christmas in her heart as the date to which dad must make it – and she hopes that he will choose to go after the day is past. Not sure why, but why not? Standing at the kitchen sink, looking out to the songbirds that flitted about on the feeders, her eyes filled with tears as she said under her breath “he’s got to hold on til Christmas“. I guess I hope so too. Yet in some way I just want it to be done. But in a million more ways, I want to stop the clock completely.

I have a plan. I will rally, deliver the pillows, stroke his head, hold his hand, see to it that he’s resting, then return home. In this eleventh hour I don’t want to skimp on anything. If I can do anything at all to help my beloved father stay in peace, then I need to do so. My time stretches out before me open and without obligations for the first time in months – it’s as if life itself has given me the gift of time. And so, with this ever-waning commodity, I need to honor it, use it, savor it. This is one delay I am very thankful for.

Post Script: The extra down pillows I brought over were just what we needed to get dad snug and comfy in his bed. He didn’t fully wake, but he did respond to me as I made some adjustments. Then I sat with him for a while, my hand on his head, my hand on his hands, and over his heart, just trying to comprehend the moment, trying to memorize all the parts of my dear father, and trying to understand what is was to say goodbye – forever.

And when I left him just now, he was peacefully sleeping. A new event however is a faint gurgling sound that  now accompanies his breathing – and I think I remember reading that this is one of those ‘near to the end’ signs. I myself am currently doped up with half a sleeping pill which I hope will let me rest until 2 am, at which time I will go over again and help mom change his undergarments. Then she can go to bed, and I’ll resume watch. What a strange time. Just how do you plan for a death? I sure am lucky to have all the time in the world in which to do it. I’m in rather a daze, going through the motions, keeping my focus on the task at hand lest I become a sobbing wreck. The tears will come when they must, but not just yet…

 

The Wait December 21, 2013

Harder than the not knowing, I think, is the knowing. Knowing that my father will die any time now. Maybe during the night, maybe tomorrow. Likely after tomorrow, I think, as Elihu will be leaving tomorrow night to visit his dad in Chicago. I think dad will probably wait until he’s said goodbye to his grandson. But either way, his death is not as far off as I’d recently thought.

Seems I’ve been fooling myself in tiny ways. I talk about it, I try my best to be upfront and honest, thinking it will help me to wrap my brain around this, maybe even deep down thinking that my talk will stall the event too. And in my waking day with all its distractions and busyness I am ok. Even though I speak of it, somehow it still doesn’t fully exist as a reality. But when I awake in the middle of the night and find myself alone, the moon lighting up the snow-covered fields, I am scared again. I look to the darkened woods towards mom and dad’s home. It gives me comfort to know he’s still just there, somewhere close, still alive. And it shakes me profoundly to imagine him no longer there. It doesn’t seem real, this waiting for death. Knowing it’s coming, knowing this time it’s not a case of almost. Not a case of weeks more, not even a case of days more, and not a case of more opportunities for forgotten stories, for recountings or great revelations. I suppose there are many cases of death bed surprises, but I don’t forsee any here. The only surprise will be in the finality of dad’s absence. And waiting for that is so hard. But lest I complain too much, I stop myself in time to realize that we are very, very lucky here. My father is dying at home. So many people are robbed of that possibility. Nursing homes and hospitals are most often the places for farewell. My father’s final breath will be taken in his home, and God willing, the three of us present for his departure.

I’ve seen my mother falter now, yet still she remains ever in charge, on top of things and very much ‘in character’. I see the edges of her soul curling in though, beginning to yield to the immense wave of sorrow that is almost upon her. Her eyes tear up, but she doesn’t give in. I’ve hardly ever seen her cry in my whole life. Because she is always in charge, dammit. She holds her own world so tightly in her control. Sometimes I think if she were to cry she might never stop. She’s got years’ worth stored up. She is due. While I personally do not look forward to having to go through both dad’s death and mom’s newfound expression of grief, it will be so very good for her. And it may be healthy for us, too. She is always the rock, the solver of problems, the caretaker. Maybe relinquishing all of that – if only for a few moments – will be a very healthy thing. Might even alter our dynamic. Certainly things will be different after we experience the death of her husband and my father together. It’s funny how even though dad is mostly sleeping, and for all intents and purposes not truly with us, the family still feels normal. Each of us in our roles, the four of us existing as a unit. A dysfunctional unit to the end, but a unit nonetheless. So this too will change.

Mom is planning on going grocery shopping tomorrow and leaving Andrew to sit with dad, in order to give him some private time to use as he will with his father. He and dad have always had a sort of ‘non’ relationship. No anger really, no overt animosity, however Andrew has seldom had much to say to dad. And I can get that; Andrew’s not functioning fully as a healthy person to begin with, and then they have so very little to talk about. Dad lives in a world that we, outside his academic, early music world don’t really know or understand well. And beside the bits of humor he uses as a means to communicate, dad has never had much to bring to the table conversationally. At least not in the past five years or so. Not since he stopped being the active director of his Festival of Baroque Music. He had a full and rich life at one time, but we as children knew little of it. When he no longer had that life – essentially by the time we moved here to New York – there was simply less to talk about I suppose. Even I myself (chatterbox though I may be) had very little to say to him save small talk – and dad had little to say in response. My world was so different from his, unfathomable to him you might say. So our relationship was based mostly on an unspoken love simply because he is my father and I his daughter. I don’t know how Andrew will act. I can’t begin to know what’s going on in his head now. But I suppose, no matter what, his heart is breaking too. Because after all, this is still his father.

Elihu and I visited mom and dad tonight. Our hope was to get two good visits in, one today and one tomorrow before we leave for the airport. Elihu will say his final goodbye to his grandfather then. I was able to sit with dad tonight by myself, and I’m glad of it. Somehow, with the cover of nighttime, the gentle glow of the Christmas tree and the Robert Shaw Chorale (for whom my father once played harpsichord) singing the ancient music of the season in the background, it was the perfect environment for close, tender words. Dad smiled nearly the whole time, and I was able to elevate him in the bed to a near sitting position. I showed for him a photo I’d enlarged of the two of us from fifty years ago, me as a baby on his lap at the harpsichord. I was happy to see recognition in his face. “Oh, what a cute baby” he said. “This was in Hamden” I offered. He nodded. Good, I thought, he understands. I began to cry, and before I knew it I was almost sobbing, holding his hand and leaning over him. I had some things I wanted to say, but it still felt a little silly, cliché perhaps, to launch into this end-of-life monologue. But I had to. I started by telling him that I just couldn’t believe he was now such an old man. And said that getting old like this sure was a bitch, huh? To which he, of course, laughed weakly and solidly agreed. I thanked him for making me the musician I was. Then I thought better of that, for I’d always considered myself something of a just-enough-to-get-by, jack-of-all, master-of-none sort of musician. My dad was the real thing. So instead I said through streams of tears “Thank you for giving me the gift of music.” Holding his hand the whole time, I lowered my head many times, kissed his cheek and told him I loved him over and over. And I thanked him over and over. He said something, and I had to put my ear to his mouth. “What, dad?” “You have always been the most outstanding child” he repeated to me. And he too told me over and over that he loved me. Then he said something so out of the blue – and instantly I recognized the child in him; “I miss my dad, and my mommy too.” I’d never heard him use any word but ‘mother’ before in talking about his mom. Did he once call his mother ‘mommy’ as a young boy? I tried to comfort him, and told him that he’d see his mom and dad very soon. I hoped this gave him ease, but if so, it didn’t register on his face. Instead, he had a distant look, and he was lost to his thoughts again. I could hear that Elihu and mom were wrapping up their visit in the kitchen, and I sensed our window was closing, so I backed away and let my son move in close to his grandpa.

Elihu had drawn an Ivory Billed Woodpecker for dad, and held it up for him. Again, dad took it in with appreciation. Elihu set the picture down and himself leaned in to speak to grandpa. Elihu, wanting to convey his deepest love to his grandfather, kept saying over and over that “he was just the best grandpa ever” and he told him over and over that he loved him so much. I wish I could have heard more, but I did hear bits of dad’s response… He spoke of loving him forever and nothing would change that. And Elihu agreed. Then dad went off onto a lovely sort of speech…”Every day is a new day, and a beautiful day. And every night is a new night, and a beautiful night. And we will all live together forever…” He said more than this, but I struggled in my mind to latch onto these worlds, that I might take something away with me. Mom came over and took a few pictures of us, I took some too in a vain attempt to capture this final visit, but I doubt in the dim light any will come out. She fed him some chocolate pudding which I was happy to see he ate and enjoyed – and I was happier still to see him wipe his moustache clean. Somehow it gave a slight relief to see him doing something so ordinary without thinking twice. And then we shared a moment I believe we were so lucky to witness one last time; Elihu and dad spoke their made-up language to each other, with gestures (dad’s greatly reduced!) and all the inflections and such to imply content. It was a weaker version of their bit, but still very funny and we all four laughed. That was nice. Truly, I didn’t expect it.

We put the bed flat again for dad to rest. We’d been there nearly a half an hour, and we’d found the natural conclusion to our visit. Elihu, mom and I went to the kitchen. We needed to get home – it was already turning into a late night, and I had yet to make dinner. While mom and Elihu chatted, I snuck back for one last peek at dad, who was not yet asleep. I put my hand on his, leaned in again and told him I loved him. “I love you too, Elizabeth” he said, and then I left.

Elihu doesn’t seem as hit by this as I’d thought he would be. After all, he’s the kid who gets things. But maybe it’s precisely because he does get things that he isn’t as worked up. He even told grandpa that he should leave us now – and then said to him “don’t worry, it’s just like turning a page”. ! It could also be said that for as precocious a child as he is, he is still a child. I myself don’t remember being whalloped by my grandparent’s deaths… I do remember the heartbreak of losing my maternal grandma, but I also remember getting over it rather easily. I was eleven. Hm. He even said to me recently that he doesn’t like to get sad, because that would be like getting mad at what is, and that would be a waste of energy. Ok my little Buddha boy. I think he’ll get it at some point, but sadly for me, his memories of Grandpa Robert as a functioning, alert man are diminishing, and so he doesn’t feel the loss as he would have if there’d been no gradual decline. After all, it’s been a few years since dad was ‘himself’. But thankfully, Elihu has had five years to know him, and at least a couple of those were good. We didn’t visit as often as I would have liked, due mostly in part to Elihu’s acute allergies and mom and dad’s cat-filled house, but I can’t kick myself for that now. I remind myself that we visited as we were able. And that Elihu and grandpa had plenty of lovely moments. Elihu may not remember them well, but I do. I have to be happy with that. It’s more than lots of folks get.

I must get to bed. My stash of sleeping pills is running low – and I’ll certainly need one tonight. I can’t begin to sleep. My head continues to ache and I’m full of dread. I’m flat-out scared of saying goodbye to my only child tomorrow, and then turning back to the business of watching my father die, and watching as his lifeless body is taken away… How in hell will we do this? I know, I know… everyone goes through it. This is nothing new. For millions upon millions of people this is nothing new, I know. Only thing is, for me, it is.

And for now, the hardest part is the wait.

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Mom told me as we left tonight that dad had hemorraghed a huge amount of blood the night before and his bleeding was slight yet ongoing. He seems in a lovely state of comfort and ease, so we don’t need to worry what caused it. Our only concern is he not be in any pain. This does seem to indicate however that his death will come fairly soon.