No Kobayashi Maru

Today in a school conference for my older daughter, one of her teachers said ‘she seems a little stressed’. This stands out, because more typically, teachers say things like ‘I wish I had a a whole class like her’. I explained to the teacher a bit about the current events regarding my mother The fact […]

Today in a school conference for my older daughter, one of her teachers said ‘she seems a little stressed’. This stands out, because more typically, teachers say things like ‘I wish I had a a whole class like her’. I explained to the teacher a bit about the current events regarding my mother

The fact that my daughter is stressed is neither news, nor unexpected. But saying it out loud to a stranger made me think about exactly how much stress this really is.

Things have not gone well in the last few weeks. I’d hoped mom would improve, once she began to get regular care. Once she knew we’d be around daily; once she had a nurse to tend her wounds, medication for pain and anxiety, i figured, she’d begin to feel better.

Mother’s never been long on coping skills; memories of this flood back. Now, suddenly, I remember her complaints about clothing that didn’t fit like she liked, or shoes that were too hot, too tight, too lose. I remembered driving back 300 miles on a family vacation because she’d left the only pair of sunglasses she could tolerate in an egghouse in jackson hole, wyoming.

These scenes were so ubiquitous in my childhood that I hadn’t even considered them in decades.

Yet now, I see what I saw as a child; panic, fussiness, intolerance of any discomfort or frustration or insecurity. I remember now seeing my mother react in screaming agony or howling rane to things I wouldn’t even break stride for.

All of it comes back, now that her limited coping skills are eroded to nothing. With her short term memory almost completely gone, anxiety engulfs her, and every discomfort, every question, every task, leaves her shaking and gasping. She’s alternating between rage and terror, with no clear idea of what’s she afraid of.

And I watch in mute frustration.

I’m ill-equipped for the unsolvable problem. I always describe this – revealing the depth of my geekiness – with a star trek reference. Kobayashi Maru – the no-win scenario. In Wrath of Khan, Kirk refers to having hacked the test in order to provide a ‘win’ scenario for a test that was supposed to have no solution, stating that he ‘didn’t believe in the no-win scenario’. That’s me. Down deep inside, I’m absolutely certain there’s a fix to every problem, given enough cleverness, enough resource, enough refusal to accept defeat. Things that can’t be beaten or out-thought or hacked fall far outside my frame of reference.

Thus, old age and mental illness mock my inability to solve them. Rage does no good; negotiation is useless. Even brute, cave-man force does nothing but worsen a tragic situation.

I lost my temper with my mother last weekend. Even knowing she’s physically helpless, slipping into madness, and utterly miserable, she exceeded my tolerance when she decided a bandage was causing the wound under it. She’d taken off her bandage, and told me proudly that she was going to call the nurses and tell them they couldn’t come and hurt her any more.

I yelled at her. And she yelled back, screaming that I don’t understand, that I don’t know what’s wrong. I wound up in tears, and she looked at me in confusion, not sure why I was mad at her or why I was wiping tears out of my eyes.

I am utterly powerless to help her; and every call I make to her doctor, her social worker, her nurse, leads to another goose chase that eats the hours of my day.

The stress is getting to me. Because I can’t move anything along. The hope of her improvement seems to have been in vain; yet to her doctors feel she’s getting better because the wounds on her leg are closing.

Because they gave her prozac for her depression and codeine for her pain, they feel the fatigue and anxiety are solved. Never mind that she refuses to take her meds out of terror they’ll exacerbate her confusion. Never mind that she’s coming apart mentally and physically. Never mind all the other things that might be wrong with her, given that she hasn’t been to a doctor in years.

And so I’m left to manage nursing care for a patient who won’t follow orders, by an agency that only wants to shovel her into the grave as soon as they can so they can close out a file without any more cost.

Twelve or thirteen years ago, my brother died. And I didn’t morn his passing; he’d checked out, mentally and physically, years before. I’d said my goodbye to him already; his death brought closure and relief. I did not expect to experience that again in my life; and yet here I sit. My mother is in a state of crushing misery, a trap of fear and pain she can’t escape, and I have no tools to ease her pain, no comforting words for someone who can’t remember what anyone said to her five minutes before. And all I can wish for today is that she slips quietly away in her sleep, saving further pain.

Today, we spoke to a nurse – finally someone who seems to recognize the severity and tragedy of the situation. For the fist time, someone from Kaiser agreed that she needed real care, something more that ‘two aspirin and call me in the morning’. Perhaps her experience in hospice nursing will carry weight that my ‘inexpert’ opinions don’t, and they’ll take some action to provide the care she’s entitled to as part of my father’s pension. My fingers are crossed, yet my expectations are very low; Kaiser cares about it’s patients the way a slaughter house cares about it’s product.

And what I can do now, is simply try to manage my own stress, and that of my family. My children have seen too much death and pain in the last two years; this will make the third relative down this path in that time. My job as parent is to tend them, giving what I can’t give to my own mother. And that one thing helps my state more than anything else I can do.

0 thoughts on “No Kobayashi Maru”

  1. sob.

    Karl, I’m so sorry. I know that I can’t do anything concrete to help and hearing that you can’t do much either is crushing to me, so it must be nearly unbearable or your end.

    Makes me want to drive by IL and give you a hug. Are you at work this week?

  2. Oh, man. I am so sorry. I can’t even begin to imagine how completely soul-breaking this whole experience is. It has all the makings of a true nightmare: childhood memories, family drama, blind bureaucracy, mortality, and futility.

    For what it’s worth, I’m thinking of you and hoping for the best in this face of the worst. It’s slender comfort, I know, but there it is.

  3. My cousin texted me a bit ago from mom’s house. Evidently the decline is speeding up. I don’t know WHAT the fuck I’m going to do, but I have the feeling sometime in the next two days I’m going to wind up back in the Kaiser ER waiting for someone to actually test my mother and figure out what’s wrong.

  4. In a world where people are living longer and longer, children are having to make more and more medical decisions for their parents when situations — that none of them ever considered — start to arise.

    I was 26 when my mother passed and 29 when my father died. My mother’s passing came unexpectedly, despite her being ill my whole life. My father was in decline for years. I was textbook in the grieving for Mom, but Dad had left me years before so I was at peace when he was gone. But all the time preceding his death was filled with turmoil, guilt and confusion.

    And while every situation is different, I empathize. Completely. And hope beyond hope that your mother’s health improves.

    It’s easy to lose sight of the fact that you are doing THE BEST THAT YOU CAN. And that NO ONE knows what they’re doing when caring for a parent. When the roles are reversed and one becomes the caregiver to the person who raised us, no one wins.

    But try to look for the glimpses of joy that come your way. Hug your children. Splurge and buy that book or CD that you’ve been considering. Bring your mother something that might bring her some happiness, like flowers or a trinket. The light in her eyes, although fleeting, will be worth it in the end. And tell her you love her. And mean it. Frustration can color all of your actions — it did mine — but years from now you’ll be glad that you let her know how much she means to you.

    And know that while you feel like that you’re treading water in an angry sea, waves crashing everywhere, you aren’t alone. Even if it feels like it.

  5. I’m so sorry you’re having to go through this. The decline of a parent is incredibly painful to see. Compounded with apathetic and ineffectual insurances and health care, it’s a nightmare.

    When my mother was ill and we were dealing with Medicaid and Medicare (my mother didn’t believe in planning for the future and had only a little supplmental insurance and no resources) we called on the services of an ombudsman in the area to help us navigate it all. He was extremely helpful. Also, the social worker at the hospital she had been in helped even when she was discharged and, ultimately, the local hospice service saved our lives. Without them, my brother and I would have simply lost our minds.

    I urge you to call on all resources you can. You’ll spend more time than you care to on the phone, but it only takes one call to find the right person and it can change everything.

    Big hugs, luv.

    Eve

    This is a link for the national ombudsman association – http://www.ltcombudsman.org/static_pages/ombudsmen.cfm

  6. I know there is nothing I can say or do will help
    you thought this impossible time but just know I am thinking of you and your family.

    If I could give you my strength I would

    Love
    KM

  7. Sometimes what you offer is yourself. The knowledge that you’re trying. The knowledge that you’re there.

    Sometimes what someone needs the most is just peace. Just your love. Time you spend with her. Maybe reading a book, or sitting for a few extra minutes talking about your day, time reading her a story, or bringing her a new cd.

    The things that are the hardest to add into our own lives, and the ones that you feel don’t “fix” anything. I think deep down they do…

    Hugs.

  8. I’ve never commented here, but I’ve watched for some time. I watched my husband die under similiar circumstances, and my mother is going that way now.

    Be strong…this too shall pass. Don’t let the guilt eat you up…guilt in the passing, or guilt in the meantime. When mine passed, my main emotion was relief…don’t let that fuck you up. What else could you be expected to feel?

    Peace to you.

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