The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

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.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Wednesday, December 24, 2008
 
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.
    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...
    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.
    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.
    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.
    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.

    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.
    Later.
Comments:
Great post! I agree... I've always wished that obits would give more information than the usual bullsh&t.

btw.. Merry Christmas! Sounds like you're having a good one!
 
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