Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
Earlier today I officially "closed off" some of the other sections of these journals...
...the obvious ones that simply can't take any more of their usual posts: Life After Death Sentencing; Mom's Daily Tests & Meds; Caring. About Food.. I announced Mom's death on most of the others, where it seemed appropriate. In all cases I included the assumption that, as time continues and I reread what I've written over the past years in these journals, I may find reason to ruminate in any and all of them about discoveries in arrears. It wouldn't surprise me, for instance, if I continue Essaying the Situation, at least.
I had a wonderful Christmas holiday with family and friends. I was surprised at how ready I was for visiting. It surprises me even more that I'm considering that I may feel the need, in my future, for much more people contact than I've preferred during the last several years of my companionship with Mom. When I first realized this I was thinking that the level of contact I seem to be wanting, now, is even more than I wanted when I was living alone, before Mom and I began our adventure. But, looking back, for all my isolationist tendencies, I've actually always included a fair amount of contact in my life with friends and relatives. So, I guess I'm just readjusting to my previous parameters. I'm considering pleading myself into another Valley visit with friends over the New Year...it was that good to be with others over Christmas. Then, soon after, another one of my sisters will be visiting and I am relishing that visit.
I was also surprised to discover that I was a wee bit anxious when I entered my home, last night, after the trip back up the mountain, knowing that I would be alone with my kitties. Thank the gods the kitties were here. I think the anxiety, which is low level, is due to knowing that I've embarked, suddenly, on "the rest of my life" (god, how I hate that phrase) and not only have no plans, I have no idea what I will "do" with it, other than what I'm already doing, which is maintaining a holding pattern in this odd area between my past and my future. I think, usually, there is often something from the past that continues through one's present in these situations, one's work, the rest of one's family, etc. So, I'm in a fairly unique and potentially nervy position, here. I still envy others their continuing jobs and concerns which I imagine will bring them safely through this kind of period without the possibility of frightening missteps...but am beginning to feel a stir of excitement about the position I'm in, as well: That of someone who has the opportunity to redraw the outer circumstances of her life; maybe even the inner circumstances, as well. I imagine some of my direction will come from the need to find work within the next few months; some will come from discoveries I make about the differences between who I was previous to becoming my mother's companion and caregiver against who I am, now; some will come from examining my interests, past and present, and considering whether and how they will bloom into the future. I continue, as well, to feel a natural (I think) desire to prove to my mother (not at her behest, but at mine) that I can rise above the pitfalls of such a time as this and "make something" of my "new" life that would please both her and me.
Everything seems to be "up in the air"...including me; at times. I find myself catching on a mental attitude of extreme omniscience, as though I'm viewing my life from a point in space far removed from where I actually am. It's a fairly pensive place to be. I've tried zooming back in but it seems these periods have their own obstinacy and refuse to release me until they are ready.
I noticed a message on my voice mail from yesterday: The death certificates we ordered are ready for pick-up. I'm not quite ready for them, for the business they predict, actually, but, you know, I think this "not quite ready" feeling is something that's going to follow me for awhile. I'm not worried, I should slog through without getting too much mud too far up the legs of my jeans. That's what I'm hoping, anyway.
In the meantime, hmmm...well, I guess I'm living in Mean Time..."mean" as in "equally far from two extremes". Which reminds me. I've discovered that my watch, while continuing to tell time perfectly, is displaying the date wrong and has taken to displaying the day of the week backwards, as well as sometimes displaying it in English and sometimes in another language. I'm delighted about this. It reminds me, every time I look at it, that I'm in transition from timelessness back to timing...and suggests that I have options about how I wish time to conduct itself in my life. That should be fun!
Death Stories Readers Are Telling Me - 1
Following is the first death story sent in by one of my readers, and a doozy it is, folks. It is the death story referred to in this comment. I am reproducing it exactly as the reader wrote it. Please respect her copyright of her material.
I was with my mother the moment she died. It was October 18, 2003. She was 66. She had a trache and had been on a vent since May 31st. She also had a PEG (feeding) tube. She had gone into respiratory failure at home, spent a month in ICU and was transferred to Kindred Hospital on the 4th of July; Kindred specializes in 'catastrophic illnesses' and almost EVERYONE had a trache/PEG combo there.For many years, one of my mother's (and my) favorite things to read in the paper was the obituary section. We considered that the second best ones were the really wordy ones that gave an overview of the deceased's life. The best ones, we felt, were the ones that had specific details about the cause of death and/or circumstances surrounding the person's death. Both of these types of obituaries are rare, our absolute favorite type being the rarest.
Anyway, my mother was alert and oriented x3 and was a 'full code'--it was her wish that if her heart stopped she wanted every doctor in town jumping up and down on her chest. She seemed rather content in the hospital--she had her TV remote, chapstick and Kleenex; not to mention people waiting on her hand and foot. (She was the same old miserable soul she had always been: instigating fights between us sisters via dry erase board.) The whole purpose of being at Kindred was to try to wean off the ventilator and she would make some progress towards that goal and BOOM something would happen (kidney failure, pneumonia, blah blah blah) and we were back to square one.
The Old Goat and I had a meeting with her doctor on a Thursday (must have been the 16th) and he said unless some serious progress started happening the hospital would need to discharge her and she would either need to be taken home or sent to a nuring home in Miami. (Miami is 6 hours from here but this area has no nursing homes that accept adults on vents) She actually had a fabulous day that day--spent 12 hours off the vent, breathing on her own, as she did the following day as well. However, on Fiday night (the 17th) she was complaining of a pain in her back/side that was at first thought of as gas. Apparently it was not and she was given a chest tube at 3am because her lung had collapsed. The last thing she ever said to me was : 'Gas, my ASS' early Saturday morning. I left, and when I got back Saturday evening (probably 6pm-ish) her door was closed and there was a flurry of activity in and out of her room. She had coded but they brought her back. And hour or so later she coded again and the OTHER lung had now collapsed. When they asked my father for permission for another chest tube he said no, enough was enough and it was time to leave her alone.
By this time it was obvious things were very dire so my husband came to sit with me. The nurse was in about every 15 minutes getting crazier and crazier vitals each time--the last B/P he got was something obscene like 40/20, I don't remember exactly...
The last time he came in he no longer found a pulse or a B/P but it was the weirdest thing because she was still breathing via the vent. He could not pronounce her so we sat there another few minutes for the doctor to come in and I believe she was pronounced around 10:30pm.
It was not an awful or gruesome death, but very odd that she still looked alive because of the machinery. The whole ordeal cost the insurance company upwards of five million dollars (!!!) but my father was only out of pocket a few thousand because he had excellent coverage. He was also compelled to put his wishes in writing due to this experience--he would like major amounts of morphine, even if it 'hastens death' but he is NOT interested in machines, antibiotics, IV hydration, NOTHING!
Anyway, this got even longer than I thought it would...but as a final thought I would like to add my mother was pretty much Mommie Dearest (without the fame and money, LOL) and we did not even speak for many years. I ran away from home at 15 (in 1983) and did not speak to her or my father again until the year 2000. And of course, most of her other children could not be bothered to even see her in the hospital, but in the roughly 180 days she was there, give or take, I missed two days, and was there at the very end.
That's my story...
Some years ago she and I read a letter in a Dear Abby or Dear Ann Lander's column, not sure which. The writer complained about the amount of detail about deaths sometimes recorded in newspaper obits, including revealing the disease that led to the deceased's demise. I remember that the columnist agreed with the reader, going on to say that it was nobody's business how people died.
Mom and I both took exception to this. Often we'd read obituaries, for both young and old, and wonder, out loud, what took the person out. Although this is often considered "lurid curiosity" in polite company, the truth is, just as we live in character, we die in character. Whether a death is "tragic" or "peaceful", the details of one's death are a final, revealing commentary on the person's life. While I certainly understand that any information about a person can and "should" be considered private, at the same time I think our subterranean knowledge of this "dying in character" aspect of life is why we have a high curiosity about the details of the deaths of people we know and, often people about with whom we aren't acquainted. Knowing a bit about a deceased person's life, sometimes even just knowing the person's name and the age at which they died, I think, automatically causes us to wonder about their death, and vice versa. I also think it would be refreshing to live in a community of the scale that allowed and dictated that every death within the community was a Monumental Moment and treated as such by all members of the community, including the creation and relating of a death story for each deceased member. The reason, for instance, that, instead of just reminding my mother of the deaths of relatives about whom she was asking, I composed death stories (the actual stories are here and here; note, as well, that of the deaths listed in the first link, two about which I know and that I often related to my mother are missing: The stories for her sister and her maternal brother-in-law; which reminds me, I need to fill those in) about those whose death circumstances I was aware is because just reminding my mother that so-and-so had died was never enough. She would inevitably ask, "How did s/he die?" Even though my mother was fairly blase about her own death, living, and dying, with the firm attitude that death happens, you don't have a choice about it so you may as well live until you die, this did nothing to assuage her own curiosity about the deaths of others.
It's a natural question that we seem to be preprogrammed to ask whenever we hear about a death, whether it's of someone known to us or someone unknown. The telling of the stories also gives us information about the survivor(s) who tell the story and their communities. I would go so far as to say that death stories are one of the more important types of stories that we tell ourselves and each other.
Note, as well, the death story, above, sent to me by a reader/correspondent wouldn't be complete without the last paragraph, a brief description of the woman's relationship with her mother and, by inference, the relationships between the mother and her other children. After I read this death story I couldn't help but glean bits of information from it that seemed relevant to my experience of my mother's death and deaths in general, as follows:
I love, especially, "that...she wanted every doctor in town jumping up and down on her chest". People forget that, although living wills are common, they do not necessarily include a personal wish to "go gently into that good night". In fact, I'd wager that, despite the press that "no heroic measures" documents get, probably quite a few more invite intervention on behalf of the possibility of a longer life, even if it includes broken ribs, sternums and drilling extra artificial orifices. My mother actually waivered on this more than a few times when the subject was broached during critical care, which is why I saw to it that she was a "code" at the nursing home, even though she was a "no code" at the hospital to which she would have been transported if she'd coded at the nursing home. It seemed like a reasonable compromise on behalf of her often convoluted wishes, at the time, to make sure a doctor pronounced her dead, rather than a nurse.Death stories are not only important in forming impressions of the ones we know who have died, they are are also a source of personal education and evolution. Once again, I invite anyone who wants to participate to submit stories of deaths you've witnessed and you want to relate.
The pain that your mother described is (love her last words, by the way, I hope I have the sense to say something equally provocative and apropos; I think my mother's last word was "No", in response to one of my two endless questions about pain and comfort, which, actually, fits her character), I think, similar, if not exactly the same, as the pain my mother experienced when her body had reached the upper limits (for her) of air hunger. Maybe she was laboring with collapsed lungs, the last few days of her life. That hadn't occurred to me. At any rate, even if we'd known this, I imagine she would not have been treated for it, other than attempts to make her "comfortable", which, by that time, would, most likely, have been for naught.
In the meantime, today I'm heading down the mountain for a few days to celebrate Christmas with family and friends, which includes providing the Christmas Dinner my mother so salivatingly and quirkily ordered. It will be the final phase of the "party on me" that my mother dictated in her codicil. She was a dyed-in-the-wool party animal, especially over the holidays. If she is capable of being there, I'm sure she will be, and she'll be thrilled with the celebration.
I'll be back sometime Friday.
Reports from the Outside World - 1
When my mother was alive and no longer getting out much, as I ran errands I'd notice all kinds of things that I knew would interest her, made notes about them on the fly (one of the reasons I always carry a small notebook with me) and report back to her, telling her, "I've got another report from the outside world, Mom, that I know you'll love!" One of her favorite types of reports were of bumper stickers I knew would tickle her, puzzle her, cause her to think. When we were in the car together she was an inveterate, intemperate, sometimes obnoxious, bumper sticker reader. When she no longer occupied the passenger's seat in our car, I'd collect "the good ones" for her consideration. I have no idea, and wouldn't care to guess, if my mother is still aware of life here. I like to think that, at least part of the time, she is, though, so, here's a Report from What Is Now Even More of an Outside World for her than previously, a bumper sticker I noticed as I was running errands today, made for my mother:
I couldn't help it, you know me, the habitual researcher. I plugged the phrase into Google. The very first result that popped up was this. Scroll down the page. Notice the place where these stickers originate? Prescott, Arizona! How curious is that!
Healing the World One Nap at a Time
Open Yourself to the Possibilities
Outside, outside world to my Ancient One: Mom, if you hear me, take a nap, now!!!
If she reads me, she's grinning, raising her figurative index finger and eyebrows, saying, "Good idea! I think I'll nap on that!" and looking for a place to sleep.
"Sometimes I feel like a motherless child..."
This post is going to be a hard one to write, so bear with my stumbling. I'll attempt to edit it into something coherent, but doing so may not be a measure of its applicability to anyone else.
Within hours of my mother's death I was confronted, repeatedly, with the issue of feeling like an orphan when one's last surviving parent dies. The first confrontation was direct; someone involved in the exit of my mother's body from our home expressed sympathy for my loss by patting me on the forearm and repeating the phrase which is the title of this post, a famous line of a an enigmatic spiritual. From then on I was alert to references to the feeling, direct or implied, everywhere. I suspect I've heard of this feeling previously, probably many times, but have never paused in notice of it because, well, for 57+ years of my life at least one of my parents was alive, so it wasn't something I felt the need to ponder.
Finally, on December 18, MFASRF wrote me. One of his parents, with whom he is in close touch, survives. He mentioned that he'd recently heard, in a discussion among several people, that no matter how old one is, when one's last surviving parent dies one feels like an orphan. He said that everyone involved in the discussion strongly agreed. He asked me if that's how I felt. Because he and I are in the habit of asking each other such questions and responding as honestly and completely as we are able at any particular time, which sometimes means reopening the discussion weeks, months or years later when our feelings change, I considered it an obligation to think and write back to him about what I had so far experienced in this regard and why I thought I was feeling the way I did. It was an emotional and intellectual workout to examine and express my response. I don't think what I wrote to him was particularly cogent, but it was my best first effort. I considered, at the time, writing about it here but decided against it because, although my experience, so far (I'm leaving myself open to the possibility that in the months and years ahead my experience may change), differs from what appears to be the mainstream experience, the mainstream experience is so ubiquitous that I didn't want to imply that any experience of missing one's parents is "wrong", or "right", or "well-considered", or "thoughtless". One's experience of one's parents' deaths is what it is, exists within the context of each person's eccentric relationship with each of their parents as well as her/his overall experience of being parented. No need, I felt, to intrude upon the grief of others, in this respect.
Then, yesterday afternoon, I got a call from the Hospice Bereavement Counselor. She was extremely patient with me...I think I must have chewed the poor woman's ear off, talking to her, in response to her questions and comments, about my grief process. I was grateful for the opportunity, too. Although I've "talked", a lot, here, and with my sisters, about my experience, and my sisters' experiences, of grief, talking into the ear of a sympathetic, trained human carries with it a sense of relief that seems impossible to find from any other source. She allowed me to pile word after phrase after sentence, one upon another, about a variety of aspects of my life with my mother, my sense of my mother's life, the days and hours leading to my mother's death, my reactions since her death...then, in the middle of it, she posited that (this is not a direct quote because I don't remember her exact words) I must feel, now, like an orphan.
This stopped me in my rambler's tracks. After some thoughtful seconds I responded that it was interesting to me that she would mention this because it was an assumption that had come up several times, in a variety of forms, since my mother's death, and, through a friend, I had been allowed the chance to mull this over. No, I had to admit, I don't feel like an orphan. Although I didn't say the following specifically and cleanly (the words didn't quite tumble out in a succinct, organized form, I'm afraid), I talked around the fact that because both my parents functioned well as parents as long as they sensed I needed them to do this, then stepped back and took on other roles in my life when they received signals from me that I was ready to relate to them on other levels, I, instead, had the sense that their job of parenting me was completed long before their deaths. Certainly, I said, I missed my mother and, by implication, my father, as singular, influential people in my life. I missed the reciprocal ability to exchange affection for, information about, interest in and influence of each of our processes of evolution as human beings. I missed the experience of us all being alive at the same time. But, I didn't feel like an orphan.
I think some of what I feel has to do with my interpretation of the word "orphan". I've always thought of orphans as people who, for one or more of a variety of circumstances have lost their primary resource for being parented while they still urgently need it. I think there is probably rarely a time when we can no longer use the steering and acceptance of someone in a parental role (a role which, later in our lives, is often called "mentor"; for an expanded view of times in our life when taking advantage of a mentor is, likely, no longer possible, see this essay). I also think there comes a time when many of us are able to successfully fly solo because we've incorporated the parenting of our mothers and fathers as a type of autopilot (in addition to them being foremost members of our super ego) which never leaves us, even if the people who were our parents have left us.
I wonder, too, if a lot of adult children use the term "orphaned", when their parents have both died long after their parental role has diminished or stopped, in order to express the overwhelming sense of loss that occurs when one is left without someone who seems so indigenous to one's existence as to be analogous to the color of the sky; the rising and setting of the sun; the existence of flora and fauna; the need for hydration and nourishment and human camaraderie. The fundamental character of the world changes when one loses both parents, I think, or a sibling or other person who has been "here" as long as, and in the case of parents, before, one can remember. You have to reorient yourself, as surely as an orphan has to reorient him or herself to having to rely primarily on his or herself long before he or she has enough experience to do this with any degree of confidence in their competence. However, when an adult who has long been fending for oneself in a variety of ways, relying on one's own judgment with assurance, expecting to endure the knocks of misfortune and bad judgment as well as enjoy the rewards of luck and good judgment, loses both parents, I don't think that adult loses a parent in the way an orphan does; at least this is what my most recent experience in the wake of my mother's death tells me. I think what I've lost is an emotional lock on the sense of the world...what I'm experiencing is the bewilderment of having to redefine that sensibility. Intellectually we know that, at least at this time in this society, it is more likely that parents predecease their children. Emotionally, though, we have no idea what this feels like, what it will mean to us, until we are left without our parents, or someone else who has been preeminent in defining the unquestioned nature of the world for us.
Late last night MPS called. I decided to ask her, without preamble, "Do you feel like an orphan, now?"
She hesitated for thought before she answered. No, she admitted, she didn't. She continued by elaborating on the detail of the loss she feels. She, essentially, mentioned the same aspects of loss about which I've written above. This probably isn't a surprise, since, despite our differences, we were raised by the same parents, thus share many perspectives.
After she and I talked, though, I thought back to how my father reacted to his mother's death. He was emotionally leveled by it; so much so that he fervently believed that he would not outlive the age at which his mother died and, curiously, died at the same age his mother was when she died. His personal history of being parented is also quite a bit different than mine. His father was mostly absent from the home for a variety of nefarious reasons so my father, at a very young age, became the breadwinner and considered himself the equal, in his born-into family's household, of his mother; in some ways, from what he and some of his relatives have described, he considered himself his mother's and sibling's supporter, above and beyond his mother's ability to support (in more than monetary ways) the family. When my father was about 16, his father returned, fully expecting to resume his "rightful" place as head of the household. My father, dismantled by his father's reappearance, issued an ultimatum to his mother, "If he stays, I go." His mother said, as it has been told to me by more than one of my father's relatives, "Good-bye, son. Good luck." Whereupon, my father set about his adult life long before he had received what our current society, and society at that time, has tended to agree upon as adequate parenting. I'm sure, when his mother died, he felt like an orphan.
As well, I think, we have to remember that throughout history the age at which one is considered a full-fledged adult, capable of embarking upon an adult life, including parenting, used to be soon after puberty began. In addition, it was not so long ago that children were considered mini-adults within the family, contributing members to the household economy, capable of handling "adult" affairs, including managing their own survival, sometimes going through a period of apprenticeship or indentured servitude to help them learn whatever else was necessary for them to be considered a full fledged adult by society, long before they achieved physical adult stature. This is not to say that the loss of one's parents did not have the same emotional effect "back then" that it does now, regardless of when, or how, one loses one's parents. It's possible, in fact, that during times when few people survive into old age, when it is common that parents survive children, feeling orphaned is so common as to be unremarkable.
So, you know, what difference does it make whether someone considers oneself orphaned by their parents' deaths versus feeling the loss of their parents as people but not feeling as though they have lost, well, someone who wields a parental role in one's life? What does it matter whether someone delineates, for oneself, the eccentric, exact dimensions of the loss of their parents?
In the case of others, I'm not sure. In my case, the difference is that, in the wake of my mother's death I do not feel any more or less adrift in the world than I did before she died. I don't feel lost, as though I am in need of direction that I can find from no other source besides my parents.
It has occurred to me that one of the reasons I don't feel the sense of loss of a rudder is that, for several of the years past I functioned as my mother's rudder. The more I think about this, though, the less I am inclined to believe that I was her rudder. I think, more likely, since she had a clear idea of who she was and how she wished to live her life long before she asked me to be her companion, I was not a built in source of direction for her, as parents to children function, but, rather, the wind in her sails...an outside source of momentum with or against which she could work to continue her life as she saw fit. I was also a crew member who protected her from attack from without, and, sometimes, from within, as long as this was possible; the maintenance hand who helped keep her clean of barnacles and spiffy of appearance, thus assuring her a smooth, handsome cut through the water; an admirer and second in command who extolled her virtues with an eye to allowing her to continue her voyage where and how she wished and was most capable. In the end, though, it is the nature of ships, as it is of every other material thing, to defy our reliance on them and disintegrate into the sea upon which they sail. Their essence, though, lives on in legend. Their crew, if not lost with the ship, transfers to another. Hmmm...could it be, we are all ships and crew...sometimes being steered, sometimes steering, sometimes captains of a fleet which includes our own ship as well as those of others, sometimes intent upon a solitary Joshua Slocum-like journey? When we lose a ship, we miss that ship but continue to sail until we, ourselves, lose our seaworthiness and join the ranks of legend.
I don't know how it feels to others. I would never attempt to argue anyone away from a sense of being orphaned once both one's parents have died. But it doesn't feel like being orphaned, to me.
I, too, Pam,
think it's relevant that you and I were alone with our mothers when each died and share the experience of having been overwhelmed by the image of our dead mothers, despite the image not being "bad", as you say. I'm so glad you commented. I've been wondering if others have had this experience.
I spent some time thinking about this, today, especially the relevance of being alone with the dying/dead and the power of this isolation to burn images into the mind of the witness. My mother is one of three dead I've seen, one at a wake, one in the bed in which he died some hours after his death, but my mother is the only person I've watched die. I viewed both of the other two with other people who were much closer to each person than I. I think, had there been others around when my mother died, my attention would have been diffused throughout the room, watching others and their reactions, as well as watching my mother, and this would probably have circumvented the etching of an image of my mother, any image of her, actually, directly onto my retina. I can't be sure about this, though. Besides your experience, I know of one other in which the image of a dead person attached itself indelibly to the memory of someone: One of my sisters. She saw my father after he died. She was not alone, she was with my mother. She also was not attending when he died (nor, for that matter, was my mother). She was so surprised and moved by his death mask, which was a "bewildered" expression, though, that she was compelled to involuntarily and serially recall it long after his death.
If anyone else reading these journals has had striking experiences regarding images of the dead, I'd love to hear from you, particularly in comments, if you're amenable to having the world know about your experience. Feel free to comment anonymously.
Today I decided to watch some of the movies I'd recorded with the DVR from television with the idea that Mom and I would be watching them later. One of those was Dirty Pictures. We had gotten in on the credits of this movie while we were tuning in to watch another. The credits include a video montage sequence of some of Mapplethorpe's photographs. Mom and I found the photos, as well as the narration about defense of the first amendment versus control of what society is allowed to view, interesting. While the credits ran I quickly surfed play times and queued up the next showing for recording. We didn't get around to watching the movie together before Mom died.
Today, as the credits were running after I viewed the film, I couldn't help but imagine how Mom would have reacted to the movie. Overall I think she would have found it interesting, although I have no idea what her reaction to some of the photographs would have been. I suspect, during the jury sequences and some of the commentary in the movie, we would have been pausing it to discuss various aspects of the trial and the issue. She likely would not have been able to focus on many of Mapplethorpe's photos, as the montage sequence technique was used throughout the movie. She may have asked me to describe some of the more confusing images. I would have, although the photographs on trial were verbally well described during the trial. I enjoyed, immensely, imagining what some of her physical and verbal reactions to the dialogue, especially the descriptions of the images, would have been.
This meditation jump started me into a review of her death; not so uncommon, right now. Just about anything, in "the right light", can do this. I realized, today, that, although I was with her, in touch with her, even, right up to her last breath, because I think she wasn't aware that she was dying, or, at least, was in fighting mode against death, in one very important sense I was not with her: I wasn't overtly encouraging her to continue. I do remember telling her that it was her choice. But my assumption, in the last twenty or so minutes of her life, was that she was dying, maybe not as soon as she did, but, you know, closer than I had previously considered. I didn't realize this, before. I wonder, now, how she was reacting to me assuming her death was fairly imminent while she wasn't. Knowing my mother's character, I don't think she felt betrayed. I imagine, if her thoughts, which were probably sub-lingual, at that time, could have been put into words, they would have been something like: "Well, I guess I'll be showing her a thing or two!" Makes me smile to imagine this.
Still, I wonder, now, would it have been "better", that is, a better death for her (as, I'm sure, if she hadn't died that morning, her death was only hours or days away) and a slightly longer life, which, I think, she would have considered "good", if I'd been actively coaching her to remain alive, rather than explaining the events that would be taking place at 0800 that morning to her if she was still alive, then giving her a choice and attending her noncommittally? I wonder if she may have gotten the idea that I was encouraging her to die. I can't say that I was, but, knowing her character as well as I do, as well as I did during those last twenty minutes of her life, I wonder if she was unpleasantly surprised that, instead of murmuring to her that "we'll get through this and come out on the other side," as I often had when attending her through other health crises, I was, instead, presupposing her death and not hiding my presupposition. Funny, there I was, giving her "permission" to die, giving this permission to the woman who had no interest in dying! No, I can't really say I was working with her.
Conversely, her labor to breathe during that last hour of her life was of a distinctly different character than I'd ever previously witnessed. The labor never let up and it increased, breath by breath. Nothing that we had in the house was capable of allaying it, although we had addressed the pain. It wasn't agonizing to watch, as, for instance, watching her sink from the bed and double over in pain a few days before had been agonizing to watch. It was, rather, awe-some, or, perhaps, more to the point, awe-full to witness. I'm sure, as well, that the reason I unconsciously took to breathing with her, in her exact rhythm, was in order to help her take another breath, and another, and one more. When she stopped breathing, I stopped, waiting for her to give "us" the signal to pull, then push, more air through her lungs.
It isn't the fact that I talked periodically throughout the night preceding her death as though I was wondering if she was close to death, saying things to her that were appropriate to say at this time, versus the day before. Nothing I said to her was odd, in the context of our relationship...in fact, over the last few years she became annoyed with the number of times I would ask her if she felt as though she was dying and reminisce about our life together, "as though you expect me to up and die this very minute!" It wasn't, even, that, after informing her of the situation regarding medication, and Hospice's arrival, and what she might be facing if she was still alive when the Hospice Cadre arrived, that I was expecting her to die. I wasn't. But, I knew it was coming. Even as I "helped" her breathe, I knew something to which she was not yet admitting, that she would be dying "soon". In that one small way, I betrayed my mother's character, my mother's belief in herself and in life. That's not what caused her death, I'm sure...nor, I think, did it have much to do with the timing. I just wonder, if I'd been actively coaching her to continue breathing, rather than noncommittally breathing with her and leaving the Final Decision up to her, would she have enjoyed a better death, from her point of view? Or, would active coaching toward staying alive a little longer have been more annoying than what I was doing?
Ah, well, obviously, there's no definitive answer to this. Not now, anyway. I don't expect this glitch to be difficult with which to live. I have no regrets. I did what I felt was necessary, what felt right, as did she. She died smack dab in the middle of our very active, in-the-moment-and-in-the-years love for one another. No better place to be when one is dying, I think.
Analyzing Grief and Mourning
At this point, I think becoming consciously aware of and analyzing my grief and mourning are emotionally productive activities. Already, after becoming aware of my image problem regarding my mother's body on her bed, a bit of my sense of being stuck in mental sand is dissipating. After writing the immediately previous post I headed out to our usual grocery to pick up a few staples I use that have dwindled. At the grocery I decided to make myself a "formal" dinner: roast chicken, a spicy orzo/feta salad with sun dried tomatoes; steamed Brussels sprouts with a Greek feta vinaigrette. I haven't done this since Mom died...I've just been eating bits of leftovers and, occasionally, one of the fairly tasteless Stouffer's entrees I bought less than a day before her death, anticipating that her appetite might return. Roast chicken with steamed vegetables and a starchy side dish (usually some sort of rice concoction) was/is one of Mom's and my favorite dinners. I used the oven and the vegetable steamer, neither of which have been used since before company left a week ago yesterday morning. It was reassuringly natural to cook for myself again, something I haven't done in years.
While at the store I also looked for something to use as a black armband. I found a black, stretchy headband and modified it for use on my left upper arm. Although I haven't yet worn it outside the house, wearing it as an expression of how deeply affected I am by my mother's death seems to make me feel less grief-bound. It's as though I am transferring my grief to the armband, where it remains in my peripheral vision and doesn't stand between me and my ability to view the world directly. I find it curious that this simple act allows me to feel a bit less thrown, a bit more competent.
For the first time in the two weeks since my mother's death, as well, last night I slept a little over eight hours. I didn't make it to my bedroom. My intention was to nod off on the couch for a bit then spend the late evening watching a movie I'd rented a few months before my mother's death that I'd planned on reviewing for this journal, The Ballad of Narayama. I wasn't at all displeased, though, when I awoke from a refreshing night-sleep early this morning. Yes, my awakening image was of my dead mother. This morning I took it in stride.
I ran a simple search of "black armband" on the internet. It is not only a straightforward symbol of mourning: It is a symbol of the IRA. It is used to protest shameful, mournful political acts. A Canadian blogger used the wearing of a black armband almost a year ago to bring attention to the senseless murder of an intellectually disabled young man; and, per comments to his post, was joined by others. "Black armband history" is a type of historical view/critique originating in Australia's overt awareness of the cultural violence settlers from other lands have wrought on Aboriginals.
My grief over my mother's death has kick-started a review of other episodes of grief in the wake of deaths in my life. I'm discovering that I have never grieved someone even close to as deeply as I find myself grieving my mother. My history is not without deaths, some of which were expected, some of which were shocking, some of which took people from my life in whom I had significant emotional stakes, like my father when I was in my mid thirties and a lover when I was in my early forties. Other deaths I easily remember are: A couple of friends in my youth, none of whom were expected to die; one of my mother's colleagues when she was a teacher; the brother of a long time, very good friend; maternal and paternal older relatives, a slew of them, actually, since Mom and I began our shared life. Along the way, as well, I've become aware, in arrears, of deaths of teachers who made a strong impression on me; the deaths of parents of long ago friends; the death of a blogger whose intention was to blog himself through ALS right up to his death, an intention he accomplished. Even in the cases of my father and my lover, I was content to acknowledge that I'd miss them, bid them good-bye and move on, surprisingly quickly. I don't find myself reviewing, critiquing and/or reliving my reactions to previous deaths in the wake of my unanticipated reaction to my mother's death. Rather, I'm heartened to know that I have the emotional capacity to be derailed by death. I wasn't sure I did and have, at times, idly wondered if this was a character defect.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson