Tag: hospice

Living Wake

Posted in An Ongoing Journal..., Growing Older8 Comments

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

Posted in An Ongoing Journal..., Flight, Growing Older, Mommy Mind1 Comment

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

Posted in An Ongoing Journal..., Growing Older, Mommy Mind, Pics2 Comments

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 he and mom retired and moved to New York permanently and we kids were out on our own in the world – 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 him a photo I’d enlarged of the two of us from fifty years ago, me as a wee one 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 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? He laughed weakly, and then 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. But my dad was the real thing. Although it might’ve seemed far too sappy to say aloud at any other time in my life, this was my final opportunity to express myself, and so through streams of tears I finally said “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, and held it up for his grandfather to see. Dad took it in with appreciation. Elihu set the picture down and then 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 how 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 words, 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 me a slight feeling of 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 to imply content. It was a weaker version of their bit, but still very funny and we four all enjoyed a good laugh. 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 followed that with “don’t worry, it’s just like turning a page”. Oh, is he truly just ten years old? Yet as precocious a child as he is, he is still a child. Maybe he doesn’t truly get it. But maybe he actually does get it better than any of us! There is a certain matter-of-factness in his demeanor which puzzles me. Then again, 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.

Recently Elihu told me that he doesn’t like to get sad about grandpa dying, because that would be like getting mad at what is, and that would be a waste of energy. Ok my little Buddha boy. What makes me sad is that Elihu’s memories of Grandpa Robert as a functioning, alert man are diminishing, and so I believe he doesn’t feel the loss as deeply 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.

Holding Pattern

Posted in An Ongoing Journal..., Flight, Mommy Mind4 Comments

I’m afraid my last post was probably too emotionally charged. It generated many responses and communications from people and had me wondering if I hadn’t made too much of a stink about things. Even though I expressed myself truthfully, I wonder if it wasn’t a bit self-indulgent. And I wonder if I may have stirred the pot too soon, as it were. I say this now because, after making a big deal of all that’s been going on, I begin to wonder if Dad won’t be here a little longer than I’d originally thought after all…

Why? Because he’s got a big, comfy hospital-style bed in the living room now. A bed which self-inflates and self-deflates in different zones in twenty minute intervals in order to prevent bed sores and keep circulation going, a bed which can raise him up to eat in a sitting position, and lower him down to sleep. He has been given – through this miracle operation of hospice – a full range of gadgets and accessories that promise to make his life cleaner, more comfortable and healthier than it has been over the past few weeks (if not months). All that and his lasting and evident sense of humor are telling me he may stick around for a bit.

I kinda wish I had a bed like that myself to hide out in right about now. Frazzled with a sudden influx of things going on at school and falling behind in a myriad of domestic chores, I haven’t showered in at least three days and my son and I haven’t had a fresh vegetable in nearly a week as I’ve had no time to catch up. I know it’s not just me; this time of year we grown-ups have a lot on our hands. With presents and parties and cards and driveways to shovel, I know I’m not the only one up to my ears in laundry and dirty dishes. Even the gal who drives my son to school in the mornings – usually a fairly upbeat and energetic woman – even she seemed a little worn and tired this morning. I thought I recognized that look, I certainly felt the same. So now that dad and mom are getting into their new groove, I’m feeling a bit of relief. This afternoon we finally have no commitments. No doctor’s appointments (Elihu had his braces put on yesterday), no car pool duty, no chorus to accompany, no students. So I’m taking the opportunity to go grocery shopping. Last night we ate the last of the pasta in the house and rounded things out with leftover party food. Ich. Can’t wait for a salad…

Elihu flies to Chicago this weekend too. I’m so very happy for him, he’s beside himself with anticipation. I’ve never seen him fill the Advent calendar so eagerly (ours is a series of pockets into which we insert a feather a day). I’m happy for him, and also relieved in that I don’t think dad will go while he’s gone. Never know, but I have a feeling. Having the house to myself is most welcome, but at this time of year it can be bittersweet, too. Last year was my only Christmas with Elihu here, and it wasn’t exactly a success. Santa found him alright, but a household of just two can be lonely on Christmas morning. So my heart is lifted to know he’ll be with his baby brothers, grandma and full household. On our end, it will be strange. Dad in his big bed, Andrew wordless, silent, unreadable, and mom chattering away to fill the space. And the tv on behind it all. I’d say jokingly that alcohol is a welcome buffer, but is it then fair to drink in front of Andrew? I don’t know. I really don’t like this situation. Likely I’ll drink. Most likely.

Mom and dad have the same birthday, January 6th. Epiphany. Imagine that. I still find it fascinating. I mean, what are the odds? They’re seven years apart, and their total years always add up to an odd number. A quick tally tells me they’ll be 165 this year. I find myself wondering if dad might wait til then. I wonder. Nothing is certain. How we’ll handle it, how I’ll be able to keep my professional self together until then, and after then. How life continues. I realize I’m sounding like the first person ever to have gone through this, but until an experience is personally yours, it kinda feels like it has no relevance at all to you. And really, it doesn’t. You pay so much more careful attention when you are living through something. You just don’t fully notice or appreciate things until you’re dealing with them. Like buying a car, or getting a haircut, or having a baby. As soon as it’s on your mind you start to seek out information. You want to hear other folk’s take on things. And then when that’s done, it’s off your mind again. And the time in between events is sort of a coasting, a living on auto pilot sort of thing. At least for me it is; it seems I travel through life from one heightened sense of awareness to another, with great wafts of less intense time in between. I feel a queer mix of both right now. With the house soon to be empty, and this great not-knowing going on, I don’t feel I’m really anywhere. Strange place, this nowhere.

The weather might be a bit blustery for travel this weekend, so part of my attention is going to that situation too. I think of my son’s plane, being de-iced, sitting, waiting on the tarmac for the opportunity for departure. Here too is an uncertain situation. He’ll be bringing a good book, a bottle of water and his DS. So he’s prepared for a long wait if need be. Never once in his years of travel has he ever been re-routed on account of weather, and I pray things remain thus. Nothing I can do about the outcome, so I’ll just have to wait and see.

There’s a lot of wait and see these days. Like an airplane in search of safe landing, we’re all just in a holding pattern for now.

Going

Posted in An Ongoing Journal...8 Comments

Let me tell you a bit about the scene: Mom and Dad’s house is an open-plan, post and beam beauty in which life takes place in the kitchen – which is the first room you walk into through the garage (as with most of the world, they never, ever use their front door). As soon as you come in, the dining room is just beyond the large kitchen island, and the L of couches to its right. (A Franklin stove sits near the couches but has been dark and unused for the better part of the past two years, unlike decades before when it was well-tended and in daily use.) There is a large tv that bisects the kitchen and the living/dining area, and it is constantly on. Mostly it’s the old black and white movies, sometimes it’s the cooking channel, and in the evenings it’s set to the local weather. Mom has become ever so slightly hard of hearing these days, and so the tv plays at a volume that adds a certain frenetic energy to the room. I always have to turn it down in order to hold a conversation. And through it all, dad – at least the past few years – has either been sitting at the island on a stool, sitting in his chair to the side, or lying down on the nearby couch. Since we four Conants moved him from the stool to the couch this past Sunday night he has lain there ever since, and it’s my suspicion it may well be where he remains until he dies. Because there’s little question about it now: my father is dying.

As I’ve said before, we Conants – at least mom and dad, Bob and Nancy, that is – aren’t very comfortable with physical displays of affections. Or spoken expressions, either I suppose. It was only through a very intentional campaign made by my ex husband years ago (when he was still my very new boyfriend) that I learned to say “I love you” to either of them. Thank goodness it was over the phone – I don’t think I could have done it in person. But at the end of my catch-up calls on Sunday evenings from Chicago to sleepy Greenfield, just as I was about to hang up, Fareed would lean in close to my face and mouth in an exaggerated way ‘AND I LOVE YOU!’ and he’d shake me til I said it. I thank my ex for a couple of things in my life, and this is one of them. From that time forward it because customary to end conversations with an ‘I love you’. But in person, not so much. And after I moved here, even less. Only in the past few months have I made an effort to revive it. Because, well, now’s the time, you know?

When my parents began their post-city lives here they found themselves in a cozy little social group which included a gay couple (that they were gay never registered to me until I was way into my own adulthood – they were simply my beloved Jim and Everett), an ‘older’ (as in my age now) opera singer, husband and wife musicians who ran an old-fashioned farm and maybe a couple extra characters that joined in the parties and concerts over the years. But the core group was always Frank and Martha, Jim and Everett, and Ruthie. Over the past decade I’ve seen all of them die. Except Martha, that is.  (One might joke that she aint never dying. And if you knew her, you’d laugh, shake your head and tend to agree.) Since only the trio has been left, it’s naturally had me wondering who would go first. And now I’m pretty sure we know.

Mom did finally call someone to learn our care options at this point. And finally, there it was, “Hospice”. For me it wasn’t a shocker, but the idea hit mom like a train. I heard it in her voice on the phone – she even readily admitted that even she wasn’t emotionally prepared for hospice to be brought up (the suggestion actually surprised her!). Later, when we visited, her eyes began to well with tears as we talked about the next phase. She’s held out til the last possible moment, and while I myself might have done many things differently, none of that matters now. Dad is still happy, so if we can keep him comfortable and healthy, he will die here at home. That, in my world, is a HUGE blessing. But regardless, it is still the death of my mother’s partner of over fifty years we’re talking about here. As much as we might toss it all around like so many common plans for the to-do list, we all know what this means. We are getting ready to have dad die, right here, and very soon. She is facing the biggest good-bye of her life. And after that, the house will be empty. She will be alone. Shit. This is hard. So goddam hard. It’s not like we didn’t know it was coming, either. “So how long did you think he might still live, Mom? Three years? More?” “Oh God no!” she snapped. “But then what, like another year?” I pressed. I’m not sure she herself knew. One doesn’t tend to actually sit down and map this stuff out. “I don’t know. His mother lingered like this for years….” she trailed off. That may have been so, but it looked like we were closer than that. Never know though. You hear stories of folks being put on hospice care and then living for years… Just never really know. But then again you kinda do….

Now that it’s real I feel a mix of three things: first, concern for my mother (and Martha too). How will she react? Will she allow us to see her cry? Childbirth gets so heavy that all modesty goes out the window; will she behave in a similar way with the death of her spouse? How does this work exactly?? Next, my brother. Just how will he react? How will this affect him? His drinking? Will this be what he needs to finally rise up and get healthy or will he sink to his own final funk? And then I myself feel a queer mix of sorrow and relief. The two battle it out inside me; when I take a closer look at his existence, it seems we only want him around us for ourselves, plain and simple. He himself would probably greatly appreciate an escape from this tired, confused body. But even as my mother had admitted a few weeks back, just having him there – even if he’s asleep, checked out, for all intents and purposes ‘not there’, his energy and presence is still very much there. And you feel it. You just know he’s there in the room. And it makes a difference. We both try to imagine the house without dad in it somewhere (as it’s been for the past quarter century) and the house seems almost pointless. Good thing mom has that goddam tv to fill the house up with crap and distraction I guess. Sigh. Elihu has great compassion for mom and her need to ‘fill the space’. “She just doesn’t want to really understand how far things have gone. She’s scared, so she tries to ignore it.” Yeah kid, probably a good bit of truth to that. Whenever I mutter about mom under my breath he says “I understand. She doesn’t mean it. She’s just trying to figure out how to behave”. Yeah, once again, thanks for keeping me on track. This isn’t easy for any of us.

When we went over earlier today, dad was resting on the couch. It was a different sort of resting now. Having continued to lose weight, his cheeks took on an extra sunken look in his horizontal position. Honestly, in his current condition, if you just glanced at him, you might think he was already gone. But no, he is there. He is there. Still. While Elihu chatted with grandma, tv continuing to do its thing, I sat next to dad, hoping for something. Some new pearl, some word, a smile…. Sadly, gone was my hope for a cute anecdote or story, it was all he could do to recount his two childhood pals by name for Elihu last time; now he related tiny blurred scenes to me, and all I could do was to try and understand what he was seeing as best as I could. Which I noticed became increasingly hard to do as mom continued to badger me with useless and uninteresting facts about this and that… a constant stream of crap that may as well have come from the goddam nightly news… Can’t that wait? I’m thinking, but biting my tongue lest it come out as I think it might… Please, lady, just shut up!! Can’t you see I’m trying to hear what dad is saying? But I don’t move, my focus is essential here. I listen, then I place my hand on his. We are connected now by touch, and I swear I feel him relax. His eyes have been closed the whole time. “Hi Dad, it’s me, just sayin hi”. He opens his eyes and smiles gently. “I love you so very much, dad” I tell him. And in a not-too-faint voice he answers me “Oh Elizabeth, I love you so very much”. Then he closes his eyes again. But my hand is still on his, we are still engaged with each other. Mom comes over to us and leans over the couch. I hope she doesn’t stay long, because she’ll probably start asking him what he wants or trying to make sense with him, asking him things that require answers – hell, that require opinions. And dad just doesn’t care now. Can’t you see that, lady? I’m thinking. Dad opens his eyes and looks at mom, saying “Pop is here…” then trails off. Mom laughs it off as the nonsensical mis-firings of an Alzheimer’s-riddled brain, and thankfully, she leaves. But I know that something is going on in there, and I stay with it. Me, I believe he’s just seen his father. His Pop. A pause. He closes his eyes and smiles. “I am in pleasure” he says, with a slight tone of humor. But then again, I take it to mean that he’s feeling ok too. He’s letting me know. “Susan” he then says, his eyes opening and looking a bit off into space. “You mean Susan, your niece?” “Yes, Susan. Where is she?” he asks. Now me, I personally believe he’s probably just seen Susan himself. She knows he’s coming soon, so she’s letting herself be seen. “Your niece Susan died about a year and a half ago. It was rather sudden. She was living with Jean in Florida. She got very sick and died.” What else to say? Sorry was not what this was about. He seemed to be thinking of – if not actually seeing – family members that were now gone. Sorry was the opposite of what was going on here now – all I felt was ‘yeah, this is it. Yes, there is some love and comfort awaiting him when he goes.’ And thank goodness! It makes me feel much better about things. A moment passed after the Susan thing, then he raised a finger and pointed a bit out and to the right… “who are all those people waiting by the curve?” he asked. “Oh, Dad, I wish I could see them too, I wish I knew who they are, but I don’t.” As if to keep things real, keep humor in the house (a staple of our family) he summons a bigger voice and in a funny accent says “I weesh to be reech”. He repeats it again, closes his eyes, and a wide, happy smile settles on his face.

This is the fork in the road at which many of my friends may choose to part from my company. Because for me, I do not believe dad’s words are meaningless bits of information, retrieved randomly from disparate areas of the brain…. I do not see this as a purely physical phenomenon taking place. Surely it is on some level just that, but there is another equally ‘real’ phenomenon occurring now which is not something than can as yet be quantified by science. I recognize my father is becoming less vibrationally in tune with this reality, and he is now becoming aware, if only in the faintest way, of the new reality he’ll soon be joining. Bunk and booey to my neurotransmitter-as-only-real-data-channel thinking friends, I know. My dear friends of the ‘it’s either working or it aint’ school of thinking will know dad’s behavior to be nothing more than a failing system of data transmission. In short: a body breaking down. Yeah, I’d agree with that. But I’m going to take that other path from here on, the one that knows we are more than an organic machine, and that there are countless energies we are a part of that no meter or machine can measure. I know that ‘real’ can be real without tests, trials and placebos. My dad’s death is certainly a real experience to him, and that, ultimately serves as the Truth here and now. Quantifying or qualifying his Truth does seem rather silly, don’t you think? A moot point really.

One day I do hope we’ll have the opportunity for a good laugh together about it all as we re-evaluate our Earthly lessons and kick back for a little respite after our exhausting lives on this tricky planet. Cuz I believe this is one tough-assed school. And I believe we’ve come here to work on things. We’ve found the right groupings and scenarios and countries, bodies, talents and occupations – the whole shebang – so that we might most effectively learn what it is we need to in order to become better. Dare I say, more Godlike. When I put it like that, kinda makes me laugh. I mean man, this planet don’t exactly seem like a good choice for a mission like that, huh? Pretty crappy place sometimes. Sure aint easy, even when you do have it easy. Plus there is this existential uncertainty which thrums through us our whole lives, nagging at us to try and answer it if we dare listen. But thankfully, there are lots of diversions here to muffle its drone. Yeah, you can easily go through your life and never give a shit about anything but just getting by. The challenge, however, is to care, and to widen your sphere of caring and loving influence. And we all know that is much, much easier said than done. The distractions are so very tempting – and easy. But a life spent mostly on the path of love and caring is one spent pretty well, at least I think so. Certainly more of a step ahead than not. And my dad has made many steps forward here. He’s also had to carry some burdens that I wish he hadn’t. He grew up knowing he was loved, but he grew up in a culture where love was not expressed. A handshake from dad before he went off to the Army. Nurses instead of mother. Boarding school from a young age. I’m glad that now, in these final, restful moments on the couch that I can tell him I love him.

Because if he’s going soon, all he really needs to know is that we love him. The rest will sort itself out on the other side.

One More Goodbye

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The husband of an old friend died last night. It had been years maybe since we’d talked in person, but she’d showed her love and support often on Facebook in response to my blog posts. I didn’t usually respond with much more than a thumbs up – a virtual nod of the head, an invisible wink of recognition across the vast space in between us. I knew she was going through a truly difficult time, and because of it I often felt guilty when I’d complain about my own situation in my posts. My life these days was so much easier than hers. She had a deep and frightening heartbreak looming on her horizon; her husband had been battling cancer for the past year. He was now in hospice. In spite of her upbeat demeanor, she knew what was coming next. I don’t know how they dealt with it – head on or voices hushed – but she was being stronger and more publicly stoic than I myself could have been. And in spite of all this, she was still witnessing the joy in the little things around her; only days ago she paid tribute to a spider web made in her bicycle wheel! Every time I’d see her name I’d say a small prayer for the family. I watched from afar. Nothing I could do. I couldn’t read what was going on inside; her mood seemed much the same as it had been the past year – hopeful, grateful, cautious. She’d done so much to cheer me through this nightmarish tour of divorce, I really felt I wanted to offer my friendship now. I didn’t want to email – I wanted to call. The old fashioned way. Her number was unlisted, so as I made my way through old boxes of date books and ancient to-do lists in my office, I was on the lookout for her number. I knew it was there somewhere, but I couldn’t find it.

Until tonight. Better late than never. The number looked familiar, and I dailed it. I got a recording. It told me the number no longer existed. Damn it. That was it. Nothing more to do. I just can’t email her right now, that just seems lame. And anyway, I really have no idea what kind of a place she’s in. Does she want to talk? Or just stay with family? Or take a pill and sleep a deep, forgetting slumber? God, I don’t know. I’m going to let it be. And just send her and the girls my love. Her husband? I myself believe he’s just fine. In fact, I’m relieved for him. It’s just the ones left behind I hurt for. What a heartbreaking planet this is.

It doesn’t matter how damned prepared you are – how well you know it intellectually that your dear one is dying – when that moment actually comes, it has got to turn your world upside down. I once experienced the death of a good friend, and it was like the breath had been sucked out of me. I walked around like a zombie for months. And he was a friend – he was not a partner, a spouse. I don’t know how that feels. I can’t imagine.

I pray that the girls can all find sleep tonight. I pray that the love they shared as a family helps sustain them during the difficult months to come. And dear Dennis, I’m so glad you don’t hurt anymore. Wish I’d known you better, but what I did know of you was kind and loving. You’ve been loved by friends and family – and that includes, of course, all of your beloved animals. I’ll bet that right now there are a whole bunch of furry creatures who are really happy to see you again!

Enjoy your peace. Goodbye for now…