This work is licensed under a Creative Commons License.

Goodbye – A Journal of a Death

Copyright © 2004

Nic Bernstein

Dear reader,

What follows is a journal which I've kept during the last 25 days of my mother's life. I did not set out to write what you now hold in your hands (or view on your screen), rather I tried to find a place to park my thoughts, dark and tortured or light and hopeful, so that the next day my mind could be clear to do whatever was needed of it.

I apologize in advance if my prose are dense or strained. I often find that my own thought processes are best accompanied by metaphors based upon my life experiences or memories, and this writing is rife with such.

Everything written here is actual and true. I have not dated the entries because the actual time or time separation matters less than the sequence and the remarkably short span from start (June 4th) to end (June 29th). In most cases an entry will mark a single day or experience, in some cases several entries comprise a single event (such as the first seven entries, which all emanated from one long, hard day).

I have written from my own perspective. This inherently makes it seem as though I am doing everything – which was not the case. My entire large family was involved in many ways large and small. It is true, however, that because of my role in the family, my relationship with my mother, and my availability of time, that I ended up, either alone or with my sister Sarah, guiding Mom through difficult end-of-life decisions, talking with doctors and other health-care providers, and other such things. By no means was I alone.

Nic Bernstein

July 1, 2004

— 1 —

I have found myriad ways, over the years, to ruin my mother's day: Lost glasses, skinned knees, expulsions, suspensions, cavities, dropping out of college, etc. Today I hit a new low; today I told my mother she was going to die. Soon.

I am not an ungrateful son, I am a painfully normal one. My act is neither noble nor plain; it is that all too familiar point where the balance of power tips completely from one generation to another. That point, that atom, that precise definable second when the parent becomes the child and the child becomes the parent. I did not ask for this job, it came begging for me.

One never knows when the die is cast that determines that you will be the one, that child, who will have the job of ministering to your parent in such profound and yet so mundane a realm as death.

My earliest memory of my mother is quite simple: I am standing in the neighborhood bakery and a woman is handing me a pretzel rod, and my mother is looking on with a mixture of admiration and reproval. That mixture, that blend of support and apprehension, would come to define our time together over the next forty years.

“I have spoken with Dr. G, he said that we can expect that there will be more incidents like this for a while now” is what I said. It was true, as far as it went. “Well, that is better than I expected, then.” she replied, “That implies that there is light at the end of the rainbow.”

I stumbled, mentally, on that mixed metaphor, but I did not hesitate to correct her misunderstanding. “No,” I corrected, “no it doesn't.”

I let the words of that last sentence hang in the air for a moment. Her face started to sag. The chin went first, then the brow, the rest of her face was trapped in between, somewhat like the cartoon characters who run off the edge of the cliff – their ears shooting up while their feet struggle in vain for a purchase, before the whole body falls down the precipice. Her face did that, it fell like that, as I went on: “No, there isn't a light at the end, this is the end.”

There, it is that simple. That is how easy it is to ruin your mother's day. You don't really need to marry the wrong person, or flunk class, or get arrested. None of that is necessary. If you can be the person who tells her that her life has reached its penultimate moment, you have won the derby.

— 2 —

In the bakery that day, I took the pretzel from the nice bakery lady, I dodged my mother's reproving eyes, and I never looked back.

This chapter is easier, in many ways, than I could have imagined. My mother has been a cancer patient for over two years, but her stamina, myopia and perseverance have sheltered us from facing the worst of outcomes until just this past few months. By the time we got here, the terrain was almost familiar.

— 3 —

My first name is James, a fact I did not learn until I was several years old. It was quite simple: my father explained to me that I needed to learn to sign my name. My grandmother had left us some money and I would need to sign a statement once a year that I had received the interest on this money and had not spent it. It was a simple tax thing. Problem is that I thought that my name, my real unadulterated-by-nicknames name, was Nick. It wasn't Nick, it was James, then Nicholas. I had to learn to write James, and I was not the least bit happy about this.

James was the fault of Nurse James, the midwife, who told my parents, about to leave mother England, that if they were going to take me to America they better give me a middle name. So they did. My father returned home one day, shortly after my birth, to announce that James Watson had won the Nobel Prize for his discovery of the double helix structure of DNA. My father, the microbiologist, was giving a tip of his hat to my mother, the geneticist, when he suggested that they give me the name James in honor of my mother's old colleague.

My mother was an old fifteen when she first enrolled at Indiana University in 1944, but for an Army brat it was a safe billet in an unsafe time. She was soon in illustrious ranks. She told us, when we were kids, that she had worked with 5 Nobel Laureates. There was H. Joseph Muller, Tracy M. Sonneborn, and S. E. Luria, as well as Joshua Lederberg, and that Watson.

As a young child I was inculcated with the idea that greatness was not only within my grasp, it was expected that I would grasp it.

I never did.

So Nicholas James it was, until the British registrar of deeds, one Ivy A. Alabaster, got hold of my birth certificate. James Nicholas I became, in that one instant, and so I went forth.

— 4 —

So I took the pretzel, and met my mother's reproval, and then my father's sneaking support, and thus was the basic core of my character forged.

My mother's face had sagged completely. I, unable to stop, went on to explain that while there may be periods of relative comfort between now and the end, it would remain a one way journey.

I really don't know what else I said. I know it wasn't too bad, since when I was all done, Mom thanked me for “delivering such a difficult message with such sensitivity” and told me that I should be the executor of her will because I have retained my sense of humor(!).

— 5 —

The pretzel rarely made it all the way home with me. If it did, my father might eat it.

“I guess I had better start to think about final disposition” my mother started to say. She went on to talk about her Viol, an early musical instrument, her recorders, some other things that none of her kids would understand. “I want the harpsichord, the grandfather clock, the other things your father built, I want those to be somehow divided up that they stay in the family and not get sundered...”

I was outside somewhere, I wasn't really in the room anymore, as she started to rattle off the items of her estate that she cared about. My mother, the quintessential pack-rat these past 25 years had suddenly started to think about individual things, rather than things as a collective noun.

What does James Watson's pretzel look like right now?

— 6 —

In the past two days I have:
told 4 siblings that our mother is dying.
told one spouse that my mother is dying.
told one uncle that his sister is dying.
told one mother that she is dying.

I don't think that I am cut out for this, but I am certainly getting better at it. I don't even cry anymore. Does that make up for all of the pretzels that I took?

— 7—

I need to start to move my mother towards the grave. That is my new charge.

Any son who tells you that he is ready for such a task is just kidding himself and you. No, I know, the pretzel is just a feint, it really means that I need to start to recognize that the mother that I have disobeyed for so long is going to make me be honest in these closing hours of her life. She is going to make me be honest in these hours and honest in my own life.

That pretzel was never more than an agreement for me not to cry. The bakery ladies knew it, my mother knew it. I guess, now, when I cannot cry (not yet, it will come, not now...) I know it as well. I will soon enough betray that deal. My mother will likely not be here to see my failure, the bakery ladies are long gone, as is my father, the Nobel prize winners, and all the rest. I will cry, just as my mother's jaw slackened.

I will always remember the moment before, however. That moment when my mother did not know that she was soon to die, that moment when the worst thing I had done to her was to drop out of college. I will always remember that moment, and I will always regret that I had to cross that line from child to parent, form jester to salve, from son to survivor.

I fear it's too late.

— 8 —

My fears turned out to be unfounded. I had not accomplished my worst act, not yet.

After several days, my mother grasped at one last straw — a desperate surgery — in the hopes that it would be the magic which would save her. This time it was almost like watching my self on stage; I was performing (it seemed), rather than just being.

My older sister Sarah proposed that we lay out a rational argument to dissuade her from this procedure (all but certain to fail — even success would mean only three months). I said no, let me try something different; an emotional appeal. This is rare in our family, and maybe it was the thing to do to keep Mom from going under the knife for an operation which even the surgeon didn't want to do.

She was already talking as though she had made her mind up, and would have the procedure. I stopped her and, tears welling up, explained to her all of the warnings, caveats, etc. that the surgeon and nurse had explained to me. I then said "I'm asking you not to do this, not to have this surgery. If something goes wrong, which is very likely, then this is the last time that we will see you. I think that you need to accept your situation. We should be making plans, so that you can see your grandchildren again, see your children again, and exit with some control over things."

She just stared into my eyes, her own jaw trembling, and then turned to my sister, “What's your 2 cents on this?” “Nic is speaking for both of us.” she said, her face half hidden in her hands. “Well then, I guess that's it then, isn't it.” She paused, for a long time, and then said, “I guess I was grasping at straws, I hadn't really heard how dire my chances were...”

This is the hardest thing I have ever done. What I did today was so much harder than just telling my mother that she would die soon, today I asked her to let go. And while I am convinced that I did the right thing, I am sure that I will live much longer with this memory than with the other.

— 9 —

There is no pretzel anymore, no more feints, no more Nobel Prizes, no more artifice or bravery, no more brownie points or merits, no more brave moments. Now is just the slow descent to death. I am not the passenger, nor the guide; just the doorman.

Soon I will sit next to my mother's bed as she draws her last breath (if I am lucky) and she will be gone, and we will call a nurse. The pretzel will become a distant memory, again, but a much more painful one.

No one writes about heroics in the language of waiting, not since the Greeks, anyway, but that is my immediate future. I once helped a friend down this road, so I know, if not all of its twists and turns, at least its basic contours.

— 10 —

I am not Jewish, despite being a Bernstein, but I am aware of some of the basics. When someone dies, someone close, you “sit shiva” for them; you cover the mirrors, close the drapes, and sit on a hard, low stool, and you suffer for them, on behalf of them. This is the highest point of duty, and a severe moment at that.

My mother has had no nourishment in nearly three weeks, and she shall have no more. Slowly, now, but soon faster, she will wither away. Her mind, her prodigious mind, the mind that worked with five Nobel Prize winners, will soon start to fade, drift and fail. She will grow gaunter and frailer, and, finally, will fall off into longer and longer sleeps.

The last few days, she will not awaken. Then, as her breaths grow more strained, there will be one; faint, weaker than the rest. She will exhale and not inhale again, ever. That is when I will stop sitting shiva for her. That is when she will have left me, us, this world – she won't need me or my fears any more.

If I am ever to reclaim my childhood right; that agreement, that understanding that the bakery lady would give me a pretzel, I would not cry, and affairs would move forward. If I am ever to take that memory which has become, for me, such a metaphor, and return it to its proper place in the past, I must do so soon. If I don't it will forever become that metaphor, and the memory will need to die as well.

— 11 —

Today the topic was the obituary.

I cannot see the end yet, but I know it is there, soon, around the next bend, or the one after. Until then, we have a list of things which require our attention, while she still awakens, while that last breath lays still in a future which I cannot define but hope gives me the time I need to put a child's memory back where it belongs and find a man's metaphor to excuse his mother's death.

This journey is mine, but is not unique, is not the last. Countless others have been here before me and will follow. I can only report what I know and live. My metaphors are clumsy, yes, but they have provided me a tool-set with which to handle unfamiliar territory; as has my writing. For some reason searching for that proper sentence or phrase makes this process easier; lets me get outside of myself and delve deeper into myself at the same time.

— 12 —

Confabulation: (noun) “a plausible but imagined memory that fills in gaps in what is remembered”

My older brother Steve brought his family to town today, they visited with Mom in hospital and then the grandchildren planted red, white and blue flowers in her front yard. My mother insists that this planting of red salvia, blue agerotum and white allysum is a cherished family tradition; one that my father had practiced for years while he was alive. This weekend would be his 82 birthday, and Father's day, so it fell to us to uphold the tradition.

The only problem was that none of us have any recollection of it at all.

This custom-crafted memory of events which never occurred is a confabulation.

I didn't know that was the word for it but, after gardening, we all — my older brother and sister, and their families, myself, and my younger brother Joe (only my wife B, my younger sister Sandy and her family were absent) — went to a late lunch together, and discussed confabulations.

When we all get together, these past several years, it is almost always with my mother, and involves some sort of holiday or birthday, or something like that. All of the strains are so evident that we don't really have many real, comfortable conversations. But this was different. Here we were still family, but the normal strains weren't there. I guess Mom's current condition was such a heavy guest at table that it became easier to just relax a little the usual guardedness.

My younger brother started it off, he explained that Confabulation was the word for Mom's mistaken gardening memory, and then we all started to air our own uncertain memories, and seek either confirmation or refutation from the rest of the clan. It was a wonderful exchange! Sure, there were jibes and laughs at other's expense, but it was so light!

It was light, so light, and nothing had been, not for a very long time, and not between all of us kids. I told my wife, later, and she suggested that I had to write this, too, in my journal; that I needed to record the light things too. I told her that I didn't know if I could. I have lost the way to grab hold of those light airy moments the way I used to be able to. I have gotten so used to the leaden feel of the constant heaviness.

Well, there you are. I have gotten hold of a light moment again! I must practice this more often.

— 13 —

I visit almost every day, and often my wife B and I will go together. We are not clingy or such, so she will visit without me, too. Today we went together.

Mom is in a lot of pain now, so she is almost always on Dilaudan. It doesn't make her as “woolly minded” as morphine, or so she thinks. I guess as long as she thinks so that's what matters.

So we visit, and then my niece Emily shows up, as well. Just 18, she is a sweet young woman, very tender to her “Nana” and smart as a whip. Her field is botany and sustainable agriculture, so all of those years of gardening and walks in the woods with Nana have really provided a fantastic connection between the two of them.

We ask the nurse to disconnect all of Mom's tubes so that we can take her for a stroll in her wheel chair. She loves to go around the block (several blocks, actually) that the hospital is on, to look at the gardens of the neighborhood. Her own house is just half a mile away, so she even knows some of the homeowners whose yards and gardens we enjoy on these walks.

She looks so much older now, her skin, parchment thin and almost transparent, so frail. When the sun breaks through the leaves to dapple upon her face, she closes her eyes and tilts her face upwards as though bathing in a shower of sunlight. I look at her, as we sit in the hospital garden, and I imagine if this is how her face will rest upon death. I look over at my niece and I wonder, seeing her considering her Nana, if she is thinking the same thing.

After the stroll we invite my niece to join us for an ice cream from a nearby store. We take a long stroll with our ice cream, past the large mansions of the old monied neighborhood, and to a fountain overlooking Lake Michigan – not far from the hospice where we want Mom to go. My niece reminds me of another walk we took, her and her mother and I, some ten or more years ago. This is so long ago to her, but just a few memories ago to me.

I feel very connected with her, right then, and I want to tell her so much. I want to tell her how strong and good her own mother is, how good she has treated Nana. I want to say “You have the opportunity to watch your mother exhibit great grace while feeling great pain. You will have the chance to witness great compassion and remember it. You will see the best in people in these next few weeks that Nana is with us, and you have the chance to let those memories help you to do the same when your turn comes.”

I don't say these things, of course. What kind of jack-ass would ruin her day, already so stressed, with such obscure painful prattle. She is wise enough; she will know when the time comes to take her emotional snapshot of those around her.

— 14 —

Today I did something good!

Listen; I took my mother into hospice care today, and for the first time in a long time I really feel as though I am contributing to improving her lot. I know, intellectually, that I have been doing so all along, but when your positive contribution is telling your mother how little time she has left to live, for example, it is easy to miss the bright side.

Still, there was the guilt that swept over me for the brief shot of joy I felt when the call came from the hospice managers and they told me that a room had “opened up” in our first choice facility. Guilt, because that obviously means that someone else had passed away. I was glad because someone else had passed away, meaning that a bed was free for my mother to die in. See? It really is that easy to no longer be able to feel good about anything!

On her way from the hospital, the ambulance crew drove past her house, where they stopped and wheeled her out to see her garden and greet some neighbors before continuing the trip. An experience which was at once both heart-wrenching yet fulfilling for her.

But, my mother is now in hospice, and the chaplain is schooled in Native American theology, and its application to hospice care, and he is not churchy. This is about as good as it gets. Oh yeah; wait – from her room you can see Lake Michigan, and the park! She won't even mind if this is the room she dies in. I have done well by her, and have found her a good resting place.

Let me explain that last comment. We are not a religious people. We don't believe in an after-life, and all that entails. When I was a young man, when that bond between my mother and I had first formed that defined that it be I who lead her in the last days, she made me make a promise. A friend of hers had died recently, and it was not a pleasant end. My mother had told me then that she never wanted heroic measures taken to keep her alive when her time had come.

“I don't ever want to be a burden on you kids.” she had said, “The Eskimo have it right; when they decide that the time is right, they just walk out into the tundra, lay down, and go to sleep. That's how I would like to go.” I pointed out that our thaw comes much earlier than their's does, which made her laugh, but that was the moment when I knew, somehow, that it really would be my task to take her down her final path. So far, at least, I feel that I have not betrayed her. I have jolted her a couple of times, but not betrayal.

— 15 —

My wife is off on a sailboat race tonight, and I have a date with my mother to watch the start from the windows of the hospice. I have learned that these little things, scheduled in advance, give her the urging that she needs to progress from one day to the next. That momentum, which we all take for granted, is precious to her now. In this case, today, it is the sailboat race.

Sarah has dropped off a couple pairs of binoculars earlier in the day, and Joe is to arrive shortly before me on other business. I make the walk from my house (about a mile) enjoying the neighborhood as I stroll. My mother taught me to enjoy my surroundings as I walk, and I am thankful for that lesson.

When I get to the hospice I quickly realize that we will not be able to appreciate the starting line from my mother's room, there are too many trees in the way, but the lounge offers a perfect vantage point. While the nurse readies Mom for the trip to the lounge, Joe and I size up the fleet (185 this year) and the binoculars. A commissary worker and a nurses aide join us to watch the boats and listen to me pontificate about sailing.

Shortly Mom joins us. We take turns spotting ships and handing the lenses to her to see. She is so weak – she can only hold the glasses to her eyes for a short while, and then needs to rest. My wife is due to start at 6:30, and we count down to that, when we all wave. Mom's wave is faint. She is tired, and asks to be returned to her bed shortly after.

As I walk home, later that night, I see a moon waxing three quarters, in a reddish brown haze. The is a large splotch low on the orb. My wife is at sea, and in a sense so am I. The only one who is certain of their fate is my mother.

— 16 —

The moon cried tonight
I know it 'cause I saw it
The moon shed a tear tonight
I saw it and I felt it
The moon let me in tonight
To its torment and its fear
The moon let on tonight
That the end is coming near

I once wrote of a tree at night
Its branches held my gaze
I wondered if they were animate
The way they danced and played
A child's hand wrote out that poem
A child's heart had felt it
A child's voice intoned the words
When that child's father perished

I wrote they were enchanted
And held a young man's heart
The way they held the moonlight
And kept the night apart
From wandering upon the land
From straying too far afield
From taking a young man's dreams
And casting them away
From missions yet to yield

I saw the moon cry out tonight
I saw its gaping maw

I saw it clenching back its jowls
I saw it cry and spread its arms
I saw it sob and drop its eyes
I saw it heave a longish sigh
I saw it let go its heart
I saw it slip into a slumber
That wasn't meant for me
To see

I'll join the moon someday soon
I'll join it in its mourning
I'll soon enough let on my pain
I'll soon enough be mourning

— 17 —

I did something today which I haven't done in many, many years: I got a grass stain on the knee of my pants.

I went with my wife, B, to visit my mother in hospice. It was about six in the evening, she had only just woken up, however, and thought it was six in the morning. With the pain meds she sleeps more and more now. It is getting harder for her to keep track of time. The other day we had a conversation where I had to correct her; she thought she had been in hospice over a week when it had only been a few days.

So we went to visit her, and she is looking very gaunt. It struck me that her face is starting to look very different than it has for the past several years. I've known that this would come, but it is very different to actually start to see it. I really have these thoughts while I am visiting with her – these kinds of analytical conversations within my head.

Tonight, as I look at her, I begin to see that she is dying. It seems odd to think, but even though her impending death has been such a central part of my own life for so long now, I haven't really seen it in her. Tonight I do. I can see the shortness of the time she has left.

We talk about things of no consequence, and I can tell that she is very cloudy about things. She is so focused on the gap in her recollections, that she had thought it was Monday morning when it was really Sunday evening. She is so caught up in trying to straighten out the recollections that she has recorded in her diary – not really a diary as much as a log that she keeps as a memory aid. She is starting to realize that this log is becoming more demanding than helpful as she struggles to maintain it.

After a while I tell her that we have a dinner party to attend, and will be leaving soon. I try to give her as much warning as I can before leaving, now, so that she will remember to tell me those things which she had wanted to talk about when I wasn't there, so that she remembers them before I leave. It is one of the adjustments one makes, like talking in a louder voice than normal, or not being bothered by those very things which have bothered me about her for years. One makes adjustments.

Next to her bed, on the table, is a card I haven't noticed there before. I look at the picture on the front, and compliment it. “It's from my sister Peggy” my mother says, “You may read it if you'd like.” So I do.

As I start to read it, I remember her telling me about it a couple of days ago. My Aunt Peggy, a few years older than Mom and having some health issues of her own right now, went out into her garden in Indianapolis to write this card. The picture on the front is of a goldfinch, and she writes of sitting in her garden watching the group of goldfinches which come to eat seed from the thistles which grow there, and of the legions of fireflies at night. She recounts a memory from their childhood, “Remember when daddy used to pile us all into the car in the evening and take us to along North River Road (West Lafayette) to see the thousands of fireflies along the Wabash River banks? It's one of my favorite memories”

The note closes on the facing page, a short single sentence. “Sleep well tonight + dream of fireflies and soft spring rains!” Just kind, simple words to a younger sister, the sort of thing that one might say to comfort a child frightened by thunder or some such. But here, in this setting, they felt so different. I can sense, at once, both my Aunt's remoteness, and her closeness. I know she wants to be here, with her sister, but she cannot be. This simple sentence serves as her proxy, her avatar.

This is like emotional Kryptonite to my stoicism, and my eyes start to well with tears. I grab a tissue, as discreetly as I can, and as I dab my eyes I say that we should leave.

As we leave the ward I start to sob, and then a noise starts to fill my ears. It is coming from me but it is not familiar. I cannot cry out, but I cannot continue to walk, either. I sit on a couch in the lounge long enough to regain my composure, B is right there with me, looking as though she wishes she could do something (I really don't know that, I realize, I just sense it. I haven't actually looked at her. I don't have it in me to look at another person's face).

“Let's go sit on the bluff,” I say, “and look at the lake for awhile.”

As we walk out of the hospital I hear the noise start up a couple more times. B asks me what the card said. I tell her about the goldfinches and the thistle seed, and I tell her about the old memory of fireflies by the banks of the Wabash river. As we exit the building, and make our way to the bluff, I try to tell her about the closing note. The noise rushes up again, I cannot see, I cannot talk, all I can do is close my eyes, stop walking, and cover my face. B is holding my arm, she is trying (I think) to look into my face, to see what is happening.

I make a couple more efforts to talk or walk. Then it happened, I just crumpled like the proverbial rag-doll – my knees buckled and I was laying on the ground sobbing uncontrollably. That noise was now a loud rush in my ears. I got myself up to a sitting position, while B sat beside me and put an arm around me. The noise started to subside, and I finally get enough momentum to tell her what the closing note said, and how it struck me.

We sat there for some time, just looking out at the lake, the boats on it, the clouds in the sky. I looked at these things. B looked at me. I couldn't look at her. I knew that to look into someone else's face would mean that I would have to engage that part of my brain which enables empathy, and I couldn't handle that, that would bring the noise back. For that moment, for those moments, I needed to be completely selfish. I couldn't afford empathy, while at the same time I needed it from her more than ever before.

When I am finally over this, I spoke of my fears that I have not done enough to encourage my mother's hopes. I have been so concerned about the potential let down that she would experience when these hopes don't pan out, that I fear I may have been contributing in a negative way to her quality of life.

As I examine the grass stain on my pant leg, a result of my crumpling to the ground, B says “Look at it this way, tonight you gave her back half a day!”

— 18 —

I visit this morning, as normal, and she has already faded even more than before. We spoke of little. My sister Sarah had visited earlier, and sent me a note that she left a Norton's Anthology of English Literature and a King James Bible, since it was getting harder and harder to have conversations with Mom. I was glad to hear this. Yesterday, when I had visited, I realized that conversation wasn't really possible anymore. Not any real, back and forth conversation, at least. I had stopped trying to really talk with Mom, but just sat, and responded when she would say something. So having these books would be good.

Shortly after arriving I pick up the Norton, and start to thumb through it. My mother has always been fond of Wordsworth, and in particular “Daffodils.” She asks me what I am looking at, and I tell her that I am scanning Wordsworth. She starts the poem “I wander'd lightly as a cloud...” I stepped in to correct, “I wander'd lonely as a cloud...” and read the rest of the piece.

She lay back with a smile on her face, her head tilted just as it had been that day in the garden of the hospital. That same repose which had led me to wonder if this was the face she would wear at death. When I finished that poem, I looked for more. She occasionally spoke, or I did, but nothing of consequence was said for quite awhile.

“What are you looking at now?” she asks at one point. “Lewis Carroll” I reply. “Twas brillig, and the slithy tove” she intoned (from Jabberwocky), and again I carried on the poem, “Did gyre and gimble in the wabe:...” and I read this one as well. Now I must note that while I am reading Jabberwocky to my mother, the nurse is injecting her with Dilaudan, and this is not lost on me. I think that Mr. Carroll himself would have appreciated a dying woman hearing this poem while indulging in a narcotic.

My mother is trying to maintain her log, but it is hopeless. “That log is getting to be too much of a taskmaster,” I say. She agrees, and lets it down on her lap. We exchange a few more words, scattered, really, and then I leave for work.

— 19 —

This afternoon, early, I get a call from the nurse at the hospice. “Your mother has had a significant change in condition” is how she put it. I call my sister, and tell her to get to the hospice as soon as she can. On my way out of my office I am calling other family members to summon them as I have so long known I would have to do. I am breathing hard by the time I get to the hospice (a four block walk) as I am both walking briskly and dialing and talking on the phone.

I do not stop in the chapel on the way in, but I do pause on the grand stairway to let my own pulse slow before entering the hospice unit. When I enter my mother's room the nurse is there, and I can see that things are now very different than they were even four hours ago.

The nurse tells me that Sandy, my younger sister had just left, just before my mother took this last turn, and had been crying heavily. Sandy told me later that while she had had little time to talk with Mom, that Mom had said to her “I'm so sorry, Sandy, I am too tired to visit. I am just so tired...”

She is laying back in the bed, her head is tilted back, her mouth slightly open, her eyes half lidded and glassy, her breathing labored. She is now non-responsive, but there is still some tone in her hand as I take it in my own. I pull up a chair close to the bed, and stroke her shoulder and her head as I hold her hand.

“You can let go, now” I think “You can let go now. I can be strong enough for both of us, you can be weak. It's okay.” I do not say this, but I think it as I look into her eyes and watch the irregularity of her breathing. I dig around in the night stand and find a cassette tape of her favorite music and pop it into the player by the bedside. “I put on the Plymouth Church Concert Chorale tape from 1989,” I tell her.

“I love you Mom” I say, “You can let go, I'm here, you don't need to fight any more battles now.”

Sarah, my older sister, arrives, and sits across the bed from me. We are both looking at my mom, holding her hands, and while I felt so strong and ready to bear any burden just a moment earlier, now that Sarah was here I was suddenly very, exquisitely weak. I start to sob a bit.

The room slowly begins to fill with family – brother and uncles, spouses, etc. The chaplain has taken names and numbers to call, and the fruits of his labors are soon evident. As the time passes we are now taking turns at the bedside hand-holding positions. We are all talking and joking, when we're not silent and sullen. My brother-in-law reads a couple of pieces from the Norton, while my uncle marvels at a word which T.S. Elliot has chosen to include in a poem (behovely).

As the afternoon turns into evening we order pizza, my wife and brother-in-law John go to get it, and some wine to go along. As the last of our family members arrive a veritable party is taking place in this very small room as pizza and wine and soda are enjoyed. We are telling stories, three generations worth, and the fellowship is great and fantastic. I tell my older sister Sarah, “When I was here alone, before you arrived, I felt strong. When you arrived I felt weaker. Now that the whole family is here, I feel stronger than ever.”

A shift begins to occur in the room, around about 8:00 pm, and the party atmosphere begins to wind down. Sarah has called the pastor from Plymouth Church, Mom's neighborhood church (of which she was never a congregant but always a good neighbor). The pastor was officiant at my father's memorial (so long ago...), and Mom has requested that she officiate at hers. My brother-in-law has chosen another piece to read, some Shelly, and does so, beautifully. It is a long and lovely piece, and the pastor arrives in the middle of it.

After the poem, Mary Anne (the pastor) says some words and provides in fellowship some thoughts that none of us have expressed. Though no one has said it, it is plain to all that Mom is breathing more slowly now than before. As Mary Anne is about to leave, my uncle suddenly sits up more than he was and says “It is ten seconds between breaths now!”

The immediate family members have already begun to cluster in closer. We move in more closely now. As it happens, I am in the same seat, closest on my mother's right side, holding her hand, as I was earlier in the day.

She is so pale, yellowish, and her face really seems more peaceful now as she takes smaller and shallower breaths. We are like a huddle around her now. We are all touching, in some way, the person next to us – me my brother, he my uncle, etc. As I perceive that it has been too much longer since her last breath, I reach around behind me and clutch my aunt's card.

I struggle to open it on the bed clothes, and read aloud that beautiful closing note, that emotional Kryptonite from the other day, “Sleep well tonight, and dream of fireflies,” I am choking up now, as I did last time I read these words, and my brother's voice strengthens mine in the final words “and soft spring rains.”

My mother passed away tonight, 8:48 Central Daylight Time, June 29^th, 2004. This tired old woman, my mother, has finally gotten her chance to rest. I hope that she has the opportunity to take her older sister's advice: sleep well and dream of fireflies and soft spring rains.

— Epilogue —

I think that I shall write no more of this. This thing, this journal or what have you, has been my therapy and my friend this past month. I do not think that I could have made it through this experience had I not taken the breaks to write this. I beg the reader's forgiveness if I have been too sophomoric, simplistic or obvious in what I have written.

I have learned a great deal during this process. I have learned that my older sister, Sarah, is the strongest person I have ever known, and has great grace and great compassion. I have learned that my mother, though increasingly paranoid and cynical in the last several years, in her last days lost those attributes and returned to that great sense of humor of hers (even in her darkest times), which I now see has driven my own. (“It's about time for one of your caustic comments” my uncle John said shortly after entering her room that last night.)

I have developed an even greater awe and respect for those people who have chosen hospice work, surely the saddest work that there can be.

Lastly, I have learned that there is more that I can do to help others than I would ever have believed. I would have laughed, six months ago, had you told me that I would be able to do what I have done these past three months. I am no saint, by far, but I have learned that I can have strength and compassion which I don't even know the source of.

Now, gentle reader, let me have my own peace. Let me go to dream myself of fireflies and pretzels and soft spring rains.

(01:27 am, June 30, 2004)