Coping Mints
I went to bed early last night since we had a big appointment the following day. I got all my ducks in a row. I planned the route down South. I planned for his meds to come with us. I planned for another snack since his lunch was earlier than normal. I planned water bottles and Gatorade. I made sure he was clean enough. His last shower was 3 days ago. He slept in those clothes each night and wore them to the appointment. I don't know when my last shower was, maybe 10 days ago. I had to power through with a wipes bath because I was out of energy.
Of course going to bed early backfired. Of course I woke up at 3:30am. Of course I was pissed off that trying to get caught up on rest backfired. Of course I started writing angry letters in my mind. That is what I do in this season to cope with the insane amount of trauma. I write and write these letters and keep them in my back pocket for a rainy day, just in case I need them. Everyone gets a letter when they betray or disrespect or ghost or fail to do their jobs. I have only sent one good letter this season and that was to our favorite EEG technician in the hospital. I will tell that story another time.
After I journaled for an hour or so about how pissed off and surly I was, I attempted to turn the inner fire around and start publishing my ramblings on my own domain. I think I did it. I think I am really pleased. Maybe a tinkering post of joy later. I have decided on a digital hearth instead of a digital garden. Much to discuss about this topic!
Before we left I checked the cats' food and water. I checked the lights and closed his laptop so no cat would hurt it while we were gone. He no longer realizes things this important - to take good care of tech that we do not have money to replace? He tried to lift a large format printer for me this morning with a microfiber towel still on it, very slick and how did he get it to the counter and not have it slide? Everything has to be monitored now. I can no longer just say "please feed the cats" and expect it to have been completed. I must now check behind each task. I can't just do it myself, I have to be his brain and I am worn the heck out already. I am also the entire C-Suite now. So yes, I still ask for help with the physical things while he can still execute them. My own body is very tired and complaining about the constant strain I have put on it and given it zero down time and it is just getting more and more compounded by the day.
I'm already worn out from the effort to get ready. I choose to take the backroads so I do not have to add the freeway to my overload. This doubles the travel time. Maps took me all ramble-y and twisty-like and we saw scenery we had not seen before. We crested the hill as you come up to the overlook at Del Mar Beach and the view was so stunning I gasped in awe. My husband did not react whatsoever and I was crushed inside. I could not let that piece get to me right then, I had to forge onward. There was no parking until the roof. It was 83 degrees out and I just had to deal with whatever spot we could get, no matter the sun. I had to hold it all in and race to find a restroom very quick once we parked. I hate this facility. They charge you to park. $6 for two hours. In a medical facility, because bougie neighborhood. We're on Medi-CAL and also displaced and it pisses me off to no end, the audacity of medical corporations...
Blank faced young man attempts to get the Alzheimer's patient to relay all his medications and that was infuriating. "It's part of the process." Ok, I'll sit back and watch the train wreck. I see it all day long, have at it. Blank and now glazed face now turns to me and asks for clarification. I said it's in his chart, you dismissed me right off the bat, so you can grab it from there because I am not doing your work for you. "oh, ok" He leaves. LOL!!! My husband sees I am no longer messing around with these people. I am here for extreme documentation purposes of the highest order today. I am armed with a three page summary of brain droppings stripped of every emotion associated with those traumatic events and translated into medical speak so they do not dismiss me again.
Neurologist comes in THIRTY MINUTES LATER with zero apology and has to get herself back up to speed. I wait. I hand her the list when she looks up. She asked if I wrote it. I said yes. "Ok, if you wrote it I will read it later." WHAT THE FUCK!? I gave you every detail of every brain dropping in a perfectly laid out four category list. Ok, I just watch her and answer her questions about her own decisions in his chart that she forgot she made. More medication adjustments. I ask why is the cliff so steep? It does not match one thing I have read about Alzheimer's? She does not answer at all. She orders a five day hospital stay to monitor his seizures again via EEG and adjust medications? HOLY FUCK. what? I thought the point was to NOT have him seize again. She orders a speech therapist. I said he can speak just fine. She said it was also for memory too. Well then say that also? "Where is all of your family?" There is no one to speak of ma'am. Also she busted out with "a motel is still a home" - WHAT? In what world is a motel a home? A motel is a temporary roof, no matter how you look at it. Unless you mean a bougie motel in Del Mar, then sure, but that is not where we are. "You qualify for such and such program" No, that program is for Medicare patients ma'am, I researched it. "oh, well then why don't you get Medicare?" OMFG, I applied on April 30th for disability to even get that rolling and do you know what they are waiting for? YOU, because you have not responded yet! "Oh, I will go figure out where that is." She sends blank face glazed man back in with an EDD form LMFAOOOOOOOOOOOO! I sent him away with a snarl. My husband cannot work, that is for someone who can get back to work within the year. He lost his career over a year ago and we did not qualify for it then. I already told her it was SSI/SSDI based and the office is so clueless they throw whatever looks good at you.
He gets another memory test done. He does not know the city he is in. He doesn't know the date or the day. He didn't draw the clock correctly. He could not recall the same five words they always ask him to remember. He could recite a boatload of words that begin with the letter F though, just like he always does. He's very good at that one because he is a natural wordsmith and will impress them with the amount he can recite in the minute allotted. I cheer him on for doing well.
Memory test over, check out over. We use the restrooms again, find the elevator, get down to the lobby and I see the coffee cart. I ask him would he like some? He declines. Usually he'd say yes, let's split one if you don't want the whole thing? I shove that traumatic gut punch down also. We locate the car again on the hot roof, check. Pay the stupid parking fee. The drive to the post office is an eye opener. The Coast Highway is scenic and beautiful and the leaves at the very tops of the trees are starting to yellow and that is how the quiet of Fall starts to creep up in Southern California. The summer's end, the folks using the last of their free time at the beaches. So many people walking up and down those gorgeous palm tree lined streets full of exciting places to eat and drink and snack and buying something joyful to take home to remember it all. I decide to stop noticing it, my heart wistful and longing to be a part of something so sunny? There is no room for extra outings in this season. There is no extra gas money. It took a quarter tank to get there and back as it was.
I look over next to me because the driver nearly sidelined our car. She was upset and smacking her steering wheel and also crying I am sure of it. I have been there before very recently and seeing that, on top of all the kids in the medical facility with their parents that I had tried not to see? I could no longer unsee anything. I started weeping.
I wept for those scared children and parents. For a child to be at the neurologist? I cannot fathom. I wept because I have not seen the sun in days. I wept because I was no longer allowed to be a normal person with freedom. I wept because I have been that woman in anguish pounding my steering wheel, not understanding why all of this falls on just my shoulders? I am holding up my husband's entire sky and my arms are shaking from the strain.
We make it to the post office and collect the mail. I refuse to look at any of this angry bureaucratic mail until I get us home. But the traffic! Maps took us crazy again and sent me right through the high school traffic where I watch in horror at all those kids looking the same, like lemmings, not one of them original or confident. Wearing furry black boots in 83 degree weather? Why? Insanity. I become very agitated and start noticing every single rude parent and teen driver acting foolish. Why are there crossing guards at a high school? My tax dollars are better spent on the younglings ffs. It makes zero sense in my mind. I am on coping mint number 8 by this time. Life Savers Wint-O-Green y'all. Crunch crunch crunch, exhale. Cool and minty. No one to kiss me. There is entirely too much traffic. Too many rude drivers not letting people merge. Everyone thinks they are more important than others. I am thoroughly disgusted.
As I pull in the motel parking lot the lady exiting was not driving straight and she nearly ran into me because she was not paying attention and then she waved all friendly like everything was hunky dory. Our keycards would not work at the back door. I send my husband around to let me in. We were locked out of our rooms and my key was not used all week, so it was not demagnetized, some bullshit happened and I had to go all the way to the front desk to see if he was taking care of it. I threw all my shit at our door in the hall on the way because I was so pissed off at having to go around to the front after him with my aching and stressed body.
We finally get inside and I get settled and open all the mail. So many angry letters, where are the forms and papers? I SENT YOU EVERYTHING YOU ASKED FOR ON THE 14TH!!! THE SAME DAY, so why did I just get 4 thick notices and half a dead tree in my mail when I did everything through the portal? His seizure revoked driver's license is causing our car insurance to be cancelled if I don't sign a form removing him from the policy asap. This would be another gut punch I was not expecting today. No medical professionals are answering the SSI office requests for more medical information and "IT'S MY JOB TO GET IT HANDLED OR WE ARE DENIED" I only have a few more days to do it and get it faxed in. They keep sending the notices to our old address, so they get lost in yellow sticker hell. The rest of my week is going to be worse than I thought.
I scarfed my turkey and cheddar sandwich down and I have a warm mug of coffee in addition to the Pine Logs soundscape that reminds me of our old fireplace, but I am still pissed off even after all the word vomit. I need to add more coping mints to the grocery order.
How was your day? ✨ I'd love to hear about it. 💖
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