Wednesday, July 26, 2023

Greetings From Hell- Hump Day Update

First off, thanks so much to those who have commented, sent messages, reached out on FB and even those who have mentally given the Mr and I hugs.  Your support means everything.  I'm going to have to apologize up front as the blog may get a little morose in the coming months as the Mr and I deal with the inevitable and sort through the life lessons we are supposed to learn.  I can't even begin to describe the pain because so much has happened.  So much was mishandled throughout this entire process which added a heap of stress we didn't need to go through.  Hard decisions had to be made spur of the moment to provide care.  So many things I want to talk about I probably shouldn't as we're considering our options to try to get policies changed so that other families don't have to go through what we are.  The message is the same as I've always told you many times here...say it with me your own advocate (or your parents.)  A glaring, likely life saving (definitely life extending) simple test result almost a year ago should've raised a huge red flag and if it had been followed up on I am fairly certain we wouldn't be here.  She could've had years left.  

We never even got a chance to get to chemo or even consult with an oncologist during these last 3 weeks.  I remember when we were excited when her oncology appointment got moved up.  In the end, it didn't matter for various reasons.  If you don't have access to your parents medical portals, get it even if they are perfectly capable people like my mom is as it's always good to have an extra set of eyes.  If you want to promise to only look at blood work results and they don't want you involved in anything else, fine.  If you see ANY measure of your or their bloodwork is outside of the normal range on routine blood tests, Google it for potential causes and ask for further testing.  If they say it's not needed, get a second opinion and/or switch doctors!!  There's no time to piss around with bureaucracy and ego.  These stories are so frequent it's not even funny.  If you are over 55, you may have a loyalty to your doctor they don't deserve that was passed down to you by your parents.  Even "good" 5 star rated doctors make life altering decisions because they dismiss something that should've been looked into more.  The poor Mr lost his father, a wonderful man, because his new cancer doc didn't want to check a box on a blood test form because "your daughter in law didn't go to medical school and stop consulting Dr. Google."  He literally had an 85% chance that his relapse was a 90% treatable refracted form of his cancer and *I* was right and the doctor didn't run that test until his platelets were too low to accept treatment.  He paid with his life.  Here we are, in a somewhat similar situation with my mother.

You never know what you're walking into each day no matter how much you read the portal and get stat/note updates before going in.  Each day brings some new heartbreak you didn't see coming when you get there.  Bittersweet moments of fleeting lucidity, weak smiles of love between us, visits from people who want to see her before she goes, and of course the dreaded 'rally' where you know the end may be closer than you're ready to accept.   All of your attention goes into trying to decipher and understand what she is trying to communicate so it doesn't frustrate her or trying to hear her weak little voice.  You don't realize how much brain power/energy that takes just listening and trying to put on brave faces for people so as not to make them uncomfortable when your brain is screaming fuck that!  Some days you know your game face is in the shop and your tolerance for BS is lower than low and you show that too.  Every night we come home and say "today was a long week."  Every day does indeed feel like a week.   We usually fix whatever is easiest, like a bowl of oatmeal, intend to distract ourselves with a show but are an intertwined heap of exhaustion passed out within 10 minutes.  I find myself up from 1-3am writing update emails for friends who have been nothing but an amazing support, a few who have been down this road themselves.  

I've been warned by several I will change.  I already am but I also have made heartbreaking realizations which is how much I apologize and don't want to be a burden come from her.  I always thought it was a defense mechanism because of my parents divorce but I think it was a learned behavior.  That tears me apart to think that she ever felt the way I did because those thoughts are consuming for me.  I have had people the past week or so politely yell to STOP apologizing for thinking I will retraumatize them.  I have apologized for crying to so many people, it's not funny.  Apologize for my thought processes.  It's a hard realization to have and something I wish I'd seen sooner so we could've talked about it and maybe found our way out of that together.  My best friend has told me before I apologize for my very existence and she's right and I wonder if mom felt the same.  I also get my manners from her.  While I may seem a surly lot, I am very polite to servers, people who do things for or give me things and the like.  Every time I give her a sip of a drink, she says thank you even when her cognitive abilities are not there otherwise.  If she belches, she still gives me the wide eyes and "excuse me!" that she has given my whole life.  I will rip a belch that tears the fabric of space and time and but still say 'pardon' after.  😆

Now I'm going to say something not high on Miss Manners list.  FUCK THIS SITUATION!!!  ALL of it.  Every last bit of everything she's having to go through.  Everything we have to watch and not be able to help her.  The frantic panicked calls to family asking "are you sure we've done everything??"  The funeral plans of that impending day when a visit to the hospital isn't on our daily list of to dos anymore.  Of knowing the last time I tuck her in for the night or feed her her favorite foods could be the last time.  Of scrambling to think of where we're going to put her stuff or not forgetting "oh I want that!"  The guilt and regret that comes when the person is far too young to be going anywhere and the concept of time is suddenly chucked at you saying "sorry...your procrastination and good intentions of getting together more is really going to cost you now."  

Obviously, because that is going on means life continues to happen so let's throw in my favorite uncle dying, a friend from high school dying the other day and you know, my laptop decides "you don't need a cursor or functioning N and M keys, right?"  Everyone gets to go about their daily lives while we just sit here in hell with blank stares, tears and a lifetime more living that will never get to happen.

For those of you who have been through losing your closest parent, I am so very sorry for the pain you went and may still be going through.  For those who haven't been through it yet, nothing will ever prepare you.  

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  1. Unfortunately literally millions IMO have a similar story to share. This should NOT be happening in the supposedly greatest country on earth. I'm for full body scans yearly but the insurance companies need to maintain their 98% profit margins to keep making politicians investors richer. That is why I think the crooks are so interested in Medicare, etc.
    Every feeling you are sharing is valid and spot on. Currently going through similar situation with a dear friend.
    Having lost Mom dec 26 and my soul mate 12 years ago, losing Mom hands down the toughest.
    The 6 months of fighting for proper care and running around to so many doctors, hospitals and skilled care centers resulted in PTSD and acute depression im still fighting my way out of.
    I don't think there is anything anyone can say or do to help prepare us for losing our Mamas.
    Only person who loved me my entire life.
    I feel you, all you are required to do is breathe.
    Hugs and more hugs

  2. I am realizing that the reason so many people going through this kind of situation appear so numb is because they are not only dealing with the immediate sadness and grief but also the minutia of everyday life and all the forms, preparations, etc that also have to be made in frantic fashion many times. With my Dad, they were 10 hours away and my Mom had to deal with a lot of that stuff and we helped as much as possible via phone and email but didn't see that first hand. Now that I am seeing it first hand it's extremely eye opening to me just how messed up our health care industry is and I so wish we had people in charge who could understand this.

  3. I'm so sorry you are going through this. I lost my mom last August to similar medical ineptitude and it was beyond frustrating to find out after she was almost gone that she could have been fine with better medical care. My thoughts are with you both through this painful journey. I wish I could tell you it gets easier, but it doesn't. Sending virtual hugs your way.


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