End games, revisited…

A short conversation with Mom last week in the car recounted events from seven years ago.  Seems to me that we have this conversation every year*, and it doesn’t change.  Just like the events from April, 2002 aren’t going to change either.  In the end – just as we did seven years ago – we agree to disagree.

Dad didn’t die of colon cancer.  It was multiple organ failure, compounded by sepsis.  Started with a botched lithotripsy for kidney stones in January.  He experienced excessive bleeding, and a massive urinary tract infection – missed by the urologist who performed a cursory and dismissive follow up. 

Dad became weak, and fell, tearing his Achilles tendon.  This landed him in the hospital, and then a rehab facility where he was stuck on his back for a month.  During this time – after a direct accusation of malpractice from one daisyfae – the urologist got off his ass and prescribed antibiotics for the infection.

While Dad was flat on his back doing some rehab three times a day, a fluid-convention began in his lungs.  Then, after perhaps too many days of Keflex, he developed a serious bacterial infection.  But by then, he’d been admitted to the hospital to deal with the fluid in the lungs.  i noticed one day an unusual red “biohazard” sign on his door.  Off to the nurses station.  We learned that the bacterial infection was pretty damn serious, and we probably should have been scrubbing in and out of the room… Nice of them to inform us.

Dad was augering in pretty quick.  The doctors recommended thoracentisis, a palliative treatment to fuse the lining of the lung and prevent further fluid accumulation.  The last conversation i had with my Dad alone was the night before the procedure.  He was lucid and clear-headed when the thoracic surgeon came by late in the evening.  After the doctor left, Dad said “I’m tired”.  i knew what he meant… His wishes had been consistent.  No heroic measures.  He didn’t want to linger.  He didn’t want to suffer.  His living will said “do it!”

After the procedure the next day, Dad never fully regained consciousness.  In and out of a semi-comatose state in the Intensive Care Unit.  We took shifts – Mom in the morning, me in the afternoon, and my sister, S, or niece, DQ, in the evening.  The doctors wouldn’t offer advice, nor could they predict the future – “we’ve adjusted his fluids” or “his kidneys are shutting down”.  They only stated facts.

i grilled them daily: “His organs are failing.  Is this reversible?”  “Have you ever seen recovery from a similar state?”  “Have you exhausted all options?”.  They clearly hated these questions.  Mom was dead set against hospice care**.  We had to aggressively seek pain management.  He’d be tossing and tugging with discomfort and we’d run for a nurse to jack up the morphine.

After four days of this, Mom still hadn’t signed a “do not resusitate” (DNR) order.  This meant that if Dad went into cardiac arrest, they’d have to slap the paddles on him, burning his chest.  My niece and i had tried to bring Mom to the logical conclusion.  That night as my niece and i sat with Dad in ICU, he showed up one more time.  He opened his eyes, pulled at the restraints.  Looking first at me, then her – unable to speak because of the tubes – he shook his head “no”.  Unmistakable direction.  He tired, closed his eyes, but was still thrashing in the bed.

We got the nurse, she upped the morphine, and he went back to sleep.  It was 11:00 pm when we got to Mom’s and told her to sign the fucking DNR.  She did the next day.  He was still on full life support.  And could linger a very long time in that state…  The doctors said “we’ve done all we can do”, and when pressed by aggressive questioning “he is suffering multiple, and irreversible, multiple organ failure”.

It was another five fucking days before Mom made the call to stop life support.  The rest of us told her that we were comfortable with the decision, but she waited.  Knowing his wishes.  Understanding the medical situation.  Waited.  For what?  i’ll never understand.

So we went through it all again in the car last Sunday.  She thinks we did it too early.  i think we could have done it sooner.  And we disagree***.  Same conversation, same time next year… My personal “Groundhog Day“.

~~~~~~~~~~~~~~

* It may be part and parcel of a ‘standard’ grieving process to go over the events leading up to the death of a loved one.  Mom starts this in January every year, recounting each section of track being laid as Dad rode the “Gonna Be Dead Soon” Train.  i listen.  i encourage her to talk.  It doesn’t make him less dead, but maybe somehow it makes her feel better…

** It was a Catholic hospital.  i  found out much later that one of the nurses had told Mom that if you go to hospice, you have to sign over all of your assets, including your house.  Seriously.  She wouldn’t even let me look into it.  Dad had wanted to die at home, and because Mom had misinformation lodged in her head, we weren’t able to follow leads to make that happen… i’d like a few minutes alone with that nurse… and maybe a sock full of quarters.

*** Mom’s desire is to hang on a long time.  She and Dad saw this very differently.  She is terrified of being let go too soon… Which has led to some funny moments along the way. 

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14 thoughts on “End games, revisited…

  1. Wow. I ended up missing a lot of those moments when my grandmother was at the end of her alzheimer’s/parkinson’s fatal cocktail. Grief is totally baffling.

  2. Daisyfae

    Having metastatic cancer, I plan my own end game every week and hope it does not play out like your father’s end game.

    Are you available for Medical Power of Attorney?

  3. stankalicious – not sure it’s something you really want to go through. he’d just tagged me as ‘number one son’, so i kinda had to do it…

    nursemyra – and hugs back to you. i know you hate this subject…

    BLT – remember, the last check should bounce if you plan it properly! and yes… if you need me to do it…

  4. Don’t be too hard on your mom. Letting go is …..very difficult. Regardless of what a marriage has been like – good, bad or just average – we build attachments to the people we share our lives with.

    My late wife had signed her own DNR. I only saw a copy of it a day or two before she died. It was heart-breaking to see her signature on that simple piece of paper.

    Days before she died, we had her seen by a naturopath. This woman was the first person who came right out and said “There’s nothing that can be done.” She also told us that when we don’t let a dying a person go, the dying person experiences further stress in hanging on. And this stress causes pain. Additional pain.

    I did not want her to suffer any more pain than she already was in. I (reluctantly) told her I was letting her go. And why. And I actively counseled everyone else to do the same. I didn’t want to do that. And I had/have much regrets after the fact. It’s something I have to live with for the rest of my life.

    I’m sorry that your dad did not get to die at home as was his wish. I, too, would be very pissed off at the disinformation spreading nurse.

    (((Hugs)))

  5. ah fuck Dais. My mum and I have a similar groundhog moment. She says, if it comes down to a decision, I should let her die. I don’t wanna talk about it. When it came down to it, I don’t know if I’d have the strength. Maybe your mum just needed some days to say goodbye, to find the strength?

  6. unbearable banishment – i’d heard that. i attribute it to the fact that there are a multitude of ways one can encounter a hospital error. it’s a miracle more of us don’t die from such things…

    stephanie – we all process it differently. i don’t believe there is a ‘right’ or ‘wrong’ to it… i’m simply not a fan of unnecessary pain and suffering. the hard part? who decides ‘unnecessary’?

    rob – thank you. i know mom is grieving her way. i try not to imply that i believe dad suffered unnecessarily because she wouldn’t let him go sooner – requires me to bite my tongue until it bleeds, and to soften my words with her. your late wife gave you a gift – by signing it, you didn’t have to. i believe dad tried to give us that gift… i listened when he talked about death, and am still not confused about his wishes. you have to wrangle with your demons, but sometimes it helps to ask the question “what would have been different if i hadn’t done it that way?” better? worse? for whom? thanks for the hugs. sending one back… sorry to drag you through it (again)…

    dolce – mom has many requests. i listen to them as patiently as i can, but ultimately tell her to write them down… among other things, she wants a balloon launch graveside. i shit you not. balloons, where we all write messages to her, tie them to helium balloons and let them go… my message: “Jesus, woman, you were SUCH a pain in the ass!”. maybe tell your mom to make sure it’s all in writing, and then you can get back to enjoying each other? no doubt you are strong. you’ll surprise yourself….

  7. death seems to be the once inevitable thing that so few of us are prepared for… i’m sorry that things didn’t go the way your father had intended… working through the emotions of the “survivor” aren’t easy, and we all go about it differently – good for you for telling your mother to write it all down. i’m sure it helps.

    as for the hospital error – it’s disturbing. you know how i feel about the bulk of the medical profession to begin with. when will people realize that improperly selecting med students, and training them to treat patients as a collection of symptoms rather than human beings, has disastrous consequences that manifest daily?

  8. The summer after my first husband died, I discovered my parents did not having living wills or directives. I harassed them without mercy and by the end of the summer they had them. It appalled me. The misinformation they had about living wills and such, and that they were willing to put my sister and I through the agony of arguing with our other sibs and various relations should the situation ever arise. I had scant info to go on where my late husband was concerned and by the time he signed his living will – his right mind was in doubt.

    I too replay “the events” from time to time. It’s normal, as nearly as I can tell. As to why your mom waited so long? I don’t know. My own scenario involved steamrolling my MIL who would have been content to croon at my late husband’s vegetative husk til kingdom come and still probably blames me for “killing him”. I don’t understand the life at any cost crowd.

  9. I am sorry you go through this every year. It goes with the bitterness, I think. My grandmother, on her deathbed, was still recounting things that had happened thirty or forty years in the past.

    I am so glad that my mom died suddenly, and that my dad picked his time and place. Also that none of us interfered with what was happening. My only regret is that I didn’t visit for Christmas, but then again, it might have broken my heart.

  10. daisy mae – i learned a lot from my father’s illness and dying “process”. i think western culture does a generally shitty job facing death, discussing death, and preparing logically for death… but then again, how to be logical when facing the loss of the people you love? dad’s oncologist was exceptional – and i wrote him a letter of appreciation after it was all over. there are still some good ones out there…

    annie – thank you. i agree that it’s a gift to ‘put it in writing’ and spare your survivors the pain, second-guessing and nights of “shoulda, woulda, coulda’ that are part of the “post game analysis” that we all seem to go through.

    “…content to croon at my late husband’s vegetative husk til kingdom come” — this is EXACTLY what mom and her sisters did as their father was dying. He had left them as young girls, but as he lay dying, they were all there, huddled at his bedside, weeping and wailing… and he liked it. So i guess it’s all ok. Dad commented that he found it horrifying, but supported Mom’s wishes to spend weeks at the hospital, at the bedside of a man who left his young family in fairly dire straights…. thanks again for sharing, and sorry for dragging you through my muck…

    silverstar – it just grates on me at this point. mom is the one who suffers through it… a strange form of self-flagellation. glad you were able to dodge this part of the messy business of dying…

  11. Letting go is so damn hard.
    I wish my father would let go.
    I can’t believe he’s still here.
    He will celebrate his 80th on Saturday ( I have to work)
    He may outlive me at this rate.
    Prayers are already out to you, kiddo
    ~m

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