Aversion to assessing one's self

My parents are totally adverse to assessing themselves, and have passed this down to my sister. Beyond that, I/we (Caroline and I) think that this is a very American value - don't think about whether what you are doing is making you happy/content; instead, use your place in the social strata, your salary, your politics, and your technology (TV, radio, mobile phones, social media) for self-affirmation.

I don't think this was ever how I wanted to think, but for a long while, society - as well as my parents - pushed this on me. I am very grateful to Caroline for getting me to think about how I use technology, and more generally about the things I invest in emotionally. It seems to me for those living by external expectations of who they should be, it is a recipe for nearly constant dissatisfaction for nearly everyone.

Christmas 2019: I Hate Big Gatherings

We celebrated the 4th night of Hanukkah (it was also Christmas, which we don't celebrate) with my parents last night. As per usual, my mother insisted that we must hold a big party at her house.

My mother did

• Nearly all the cooking (although she let Caroline make the latkes, and I think she sent Sophi or Jon out to get a pair of rotisserie chickens)
• Hung all the decorations
• Wrapped all the presents
• Took care of dad
• Organized the invitations
• ...Basically everything

As I've chronicled, she's been exhausting herself taking care of dad well before we had this party, so now she like, really really really exhausted. And you know what? Exhausted people are so much fun to be around...

My father

• Pulled out his feeding tube again a couple nights before. Which actually wasn't the worst thing, as in he'd already managed to effectively destroy the feeding tube cap (non-replaceable) before that.
• Was feeling sick and in a terrible mood. And I was tasked with sitting with him and trying to cheer him up; it didn't work
• Was very short tempered with everyone, especially mom
• Wouldn't take his feedings or his medicine

My sister

• Held court talking to her sister-in-law Adie about
• How wonderful and beautiful California is
• How awesome her Peloton cycle is, and how it has changed her life
• How stupid her children's friends parents are
• ... And when she was done she spend the remainder of her time on her awesome phone

My brother-in-law

• Was on his phone and spoke to no one, as per usual

When the party was done...

mom

• Lost the yogurt container containing the syringes she needed for tending to dad
• Poured dad's pain relief medicine down the sink
• Blames dad for everything

And dad

• Yelled at me and Caroline to help mom find the syringes / yogurt tin
• Yelled at mom that he was in pain and needed his pain medicine
• Got an broken up ibuprofen pill that mom has smashed up (in lieu of the medicine she'd poured down the sink) stuck in his feeding tube, and yelled (more like grunted angrily) at mom
• Wrote me an email at 3:30 AM apologizing, but also noting how frustrating mom's care and her inability to accept help is to him
• Blames mom for everything

My parents

• Can't communicate. And so they are never going to solve these problems

Why oh why do we need to do big gatherings?

12/15/2019

Six days to the "shortest" day of the year. My father is still improving from his hip infection. Called my parents (aka "the folks") yesterday: They said don't come over, "we are saving energy to go to a concert"... they still haven't adapted to the reality of where dad is in life. They still need the challenge and to push past the limits. I can understand this thinking, but it just seems to me so insensible to not adapt to reality. Nothing I can do about it though. They are not the listening type.

So about me:

Yesterday we went to synagogue. I wanted to go in particular to meet up with a friend who had sent me a very sweet note of love, advice and encouragement. (I can definitely use all the love, advice and encouragement you all have for me right now) Entering the synagogue, I broke down in a little cry - overwrought with emotions. All that is going on with my dad, all that is going on with setting up my business, and then about how many wonderful loving friends I have, and how many blessings - how many miracles - God has bestowed on me. What a life! I am at once proud of who I am, and humbled by the how loved I am. I am overwhelmed by the challenges set forth before me, and comforted to have Caroline, Anna, and Alma helping me navigate through more than I ever thought I could. When the friend I had gone to synagogue gave me a long, deep hug, listened to me and just let me know that she was also there to help me navigate, I felt such thankfulness to God and to life for putting me in this place where life truly does transcend me, but where I have a backbone of love from my friends and my family to help me get through it.

I am crying now. It's a lot... But I'm doing it! They say that to whom much is given, much is expected... And so SO much has been given! The only way I have to express this is "life transcends me".

Thank you friends. Thank you

11/21/2019 - 11/25/2019

I was really struggling on Thursday. At work, they are once again moving to try to discipline me and get me in trouble. I have been thinking a lot about this is weekend (naturally) and thinking about how to counter what they are doing. I think I've got a better handle on this now (11/25) than I did on the 21st.

In general, I had a bad week. Work was bad. Dad has got his hip infection under control, which means he's feeling better, which in turn means hi is yelling at everyone  (mom, me, Caroline) And barking orders. He tells me I am not helping mom enough. Mom of course won't accept help. There is nothing that can be said to him or her that would improve things. Despite how much effort we've been putting in, dad in particular still thinks I'd rather not be helpful.

He's excited to be getting better. "I could live another year!" He says. I don't know how mom or I are going to last a year at this pace.

+408 Days

It's been a week since I blogged about the current state of affairs.

• The parents got rid of the first lady they hired, but have hired a new one. It seems like mom and dad have finally accepted that this is more than a one person job.
• My dad continues to be really bad at being sick and incapacitated. His temper is short, and there are constantly things he would like others around him to be doing. And he's having problems dealing with his pain
• It has become easier for me and my family to see him and be in my parents apartment. The parents have got more help, but also I think we've all normalized as to what to expect

Summary: Just woke up on Sunday morning. Or I should say that my younger daughter Alma just woke up, and that woke me up. I had been in a light sleep state, my mind uncommonly free and unencumbered, just basking in the quiet serenity because the new day starts. My kids and partner (wife just isn't the right way to describe Caroline) are great! Their light brightens my life

+397 Days: Echoes of emotions long buried

"I don't want to live like this. I am ready to die"

… And suddenly, it was 1999 again, and I was back in the hospital in Berlin.

All week long I had been way off-center emotionally, and I couldn't put my figure on just why. Today it became clear what the root cause of this was.

In 1999 I was studying abroad in Berlin, Germany when I wound up in a hospital with a massive tumor almost dead center in my brain. The tumor had cut off fluid drainage, and I now know that I had been experiencing a condition called hydrocephalus - CSF fluid build-up in the brain. I had been dealing with this condition for over a month before it was properly diagnosed. And between the time I first had symptoms to waking up in a hospital with tubes coming out of my head and beakers of brain fluid filling up next to my hospital bed, reality had become fiction, and fiction my reality. I thought I was on an alien spaceship. I thought the parents that I'd always known were just a sinister fiction. I had full blown paranoia, and where reality seemed to reemerge in the day time, night time was always a reminder that the reality that I was so desperate to latch onto was false. It got to be so bad sometimes, and so unending. Having lost touch with reality, I was so deeply desperate. And all that was real was my pain, the tubes coming out of my head, and the nightmares enveloping me. "I can't live like this" I thought. and the desperate idea  of death as an escape from the pain and delusions was something that I started to contemplate.

Back to my father: A day or two after he had been hospitalized, dad wrote a note on his pad and handed it to me:

"I don't want to live like this. I'd like to die in dignity". "Oh dad!" was all I could say. I gave him a soft hug. I knew right where he was, and I remembered my distant memories of being so desperate.

I left the hospital and went back home. I thought I was dealing with this just fine. What I didn't realize was that seeing my dad in the hospital and reading his note that he was ready to die triggered old memories of my paranoia and desperation in Berlin.

Today, the old emotions and feelings from being in the hospital in Berlin that I thought I had handled burst through my sub-conscious into my conscious brain. And all of a sudden I was back in the hospital - the feelings of paranoia, desperation and powerlessness came flooding back. I broke down and wailed. It flooded through me, and the paranoia and desperation that I hadn't felt or been able to summon for years was suddenly right back upon me. "Just stay in the moment" Caroline and our friends were advising me. I knew this was all I could do.

+387 days: Dad, pneumonia, and the ER

I went to visit my parents today; dad was in bad shape. He couldn't get out of bed, had been sleeping/resting all day. By the time I got there, things had rapidly worsened. Mom had called his doctors, who all advised (a) that previous testing suggested that he might have pneumonia (b) that he should go to the ER if he was struggling and couldn't breath.

But he was in a state. He didn't want to go to the ER, and he didn't want to get an ambulance. Mom was making more calls, dad's panic was rising. Mom suggested wheelchair service (to the ER?). Dad, in full panic, scribbling on his notepad:

I AM DYING

Mom rushed in and asked if she could call an ambulance. Dad nodded. I called 911 and told them that we needed an ambulance and where we were. I was … what was I? I was very VERY worried. Dad was in full panic. He had me bring him all his clothes and help dress him. The whole apartment was in panic: I was looking frantically out of the windows (a) to try to calm myself (b) to see if I could spot the ambulance. Mom is racing around the house trying to find all the medical insurance cards

IS THIS IT? IS MY FATHER LEAVING THE APARTMENT FOR THE LAST TIME?

Finally, I spotted an ambulance coming in our direction. It turned the corner and stopped outside the apartment. "The ambulance is here" I said to dad. I met the EMTs at the front door. They came in and examined dad. It felt good and reassuring that they were with us. Mom calmed down and gathered his insurance cards and other paperwork. As for me, honestly, I think I was calmer now that my parents weren't in charge of what to do next. The EMTs finished dressing him, pulled him up to a sitting position, and laid him on a stretcher. Wheeled him to the elevator (there wasn't enough space for me. I caught the next elevator down).

When I got down, they were just preparing to raise the stretcher so that they could slide him into the ambulance. They got him in, and started securing him inside. "Are you going too?" They asked me "Yes absolutely" I said. They directed mom to a side door where they'd set out a small foot stool to help her get in. Mom wasn't having any of it. She clambered right in through the back, and the EMTs help to buckle us in.

"I don't think I've ever been in an ambulance" mom observed. "I have definitely been in an ambulance" I told her, "and I think you have too - when you had your anaphylactic reaction to cold?" "Yes yes true enough" she replied. She was taking a lot of interest in the equipment laid out around us. I think she does this as a coping mechanism. Inside my head I was making up all kinds of scenarios out what could happen when we got to the ER, and if there was anything vital that I should have in the front of my mind.

We arrived at the ER. It turns out this facility is/was a free-standing ER with no hospital attached to it. They got him in to see the doctors right away. The doctor's did the usual stuff: IV line, Stethoscope for breathing. Took blood. Took an x-ray of his chest. Diagnosis of pneumonia was confirmed (though later, oddly, this diagnosis turned out to be incorrect) he was put on IV antibiotics. There was a question of which hospital to transfer to: Columbia, where his doctors are, or Lenox, where the ER had a relationship, and where they knew that they could get a bed for him. Eventually, we decided on Lenox. Mom and dad got another ambulance to transfer them, and I got a sandwich and went home.

How I feel / felt

Heavy, very heavy. To come home and get the report that dad couldn't get out of bed all day, to see him so unwell. The hardest thing from me has been communicating with him. He scribbles his fear out on his pad. When he wrote: "I am dying", and mom still was looking for the number for the wheel chair service, I felt panic and hopelessness.

But on reflection, I think it would have been even harder if I hadn't been there. So much harder to hear the news that dad needed to be rushed to the ER and then to the hospital, than being there in person. So in that sense, I guess I was lucky?

-- update --

Can we cut through this shirt?

I am just now remembering how in the ER, they asked this. Otherwise, they'd have to take off his breathing mask to get the under-shirt off. I immediately said "Yes", and mom concurred.

Now that I've remembered this, it is bringing up thoughts and emotions in me I didn't know were there.

One of my strongest childhood memories of dad (Sophi's too) is dad roaming around the house in his tighty-whitey's. It wasn't rare for him to have on a white undershirt too. These undershirts were typically deeply sweat and errant food scrap stained. The undershirt is/was a testament to how he lived life actively, with a little bit of sloppiness and hedonism mixed in.

Now I am realizing that my feelings of seeing his undershirt cut off is like seeing the past sheered away from him. The man he was, to the sick man he is now. One more veneer of constant strength in life gone. One sweat-stained undershirt removed. One man's life almost over.

+401 days

We went to see mom, dad, and Lorna again today. Things were much much better! My father has settled in, and mom and Lorna told me that he'd had a (mostly) peaceful, happy, and mellow day.

Good Changes:

• The Problem with the hospital-type bed not being about to rise high enough so that he could sit up and get in and out of bed was fixed by adding an extra pillow under him.
• Dad was in a diaper. This is good not only as a precaution for when dad can't get his pee bottle quick enough / get to his potty quick enough, but also because I believe Lorna made the suggestion that he'd be better with a diaper, and it seems like my parents were able to listen to her and take her advice
• On the subject of Lorna, she has become a stabilizing force in my parents home! It was pretty obvious that mom was grateful to finally have help.

Bad Changes:

• There was a problem getting the safety railing on side of the bed to move up and down
• Dad is having panic attack episodes. He will start with short, shallow breathing and if he has a pad, scribble like mad and then panic that whoever's there (a) figure out what he's after and (b) do it immediately. We're all worried that he might kill himself by not breathing properly

As for me: I was happy that I could be with dad. I was VERY relieved that the emotions that had been summoned up the week before - The echoes of my own time in hospital when I was ready to die - were related to the hospital and not to seeing him. I helped mom and Lorna in getting him into and out of bed.

One moment with dad

"Dad," I said, "it is hard seeing you like this. And I know for you it must be so much harder. But at the same time, I am glad that I can be here with you. It is important to me not only as your son, but for all that you did for me - how I became your priority #1 when I was sick with my cancer. I want you to know that it is important to me that I look back on this time and I can say to myself that I didn't flinch; that I was right there with you."

He smiled, and I gave him a hug

+400 Days

Approximately 400 days ago, my father was diagnosed with ALS. Thus the title of the post: +400 days (since diagnosis).

But before getting started, an explanation of the title of the blog, "Life transcends me". Understand that I was still reeling from the events and emotions of +397. Understand that if right now I could kill my father legally (aka assisted suicide), I think I would want to grant him this. I know that at this point, death would be a release for him.

I love my father, and he is my role model for what it means to be a man and a father in this world. We have had so many wonderful times together, and I wish we could still keep having them. But reality is reality. And life transcends me.

This is my first post about on this blog. I started the blog to be able to write my feelings down so that I could deal with them more objectively / more as external feelings. I have jumped right in on this, without providing enough background to justify the narrative. I think my subsequent posts provide better narrative for others to understand my experience. This post is for me.

Meditating, trying to calm my mind: Given the thoughts I related above and below under "Losing my center", I trust you understand when I state that my mind was going in every direction at about a zillion miles an hour.

When I meditate, I normally switch on a series of arias I found on YouTube. I find this very soothing. Today though, the arias weren't working. So I switched to Sarah McLachlan. The first song was "In the arms of the Angel". And as the music flowed over me, I remembered and re-centered around my angel - Caroline. When I am lost, Caroline has always been the one to help me find my center.

Losing my center

Last night we went to visit my folks - my father had just been released from the hospital and was coming home. I/we wanted to be there to greet him and bring some merriment into my parents lives... it didn't work out that way. By the end of the evening, my father had soiled himself, the hospital bed that had been set up for him had broken. He was/is in more pain than his pain medication can resolve. My mother was declaring the whole idea of leaving the hospital for palliative care at home a disaster. They have finally gotten a person (Lorna) to help my mother and help care for my father, but I doubt that anyone got any sleep.

I am caught between so many emotions: Wanting to help my parents, who were there for me 100% when I had my brain cancer. Wanting to help my parents itself comes with several emotions, as they aren't the best (I'm sorry mom and dad) at accepting help. Another emotion I have is not to hide my face - not to shirk from dad's ALS progression, from the pain, the poop, the pee and his increasing inability to communicate. In fact, the last is one of the hardest emotions to deal with. For while I expected his voice loss and I think have adjusted to this, the texts and notes he writes on his phone and notepads have been increasingly incoherent. There's the emotion of helplessness when he wants something so desperately, but he cannot communicate what it is he needs.

Back to the "Arms of an Angel (aka Caroline)": This is what I need today, and is the where life / god / the mystery has brought me. I need to be with my Caroline, my rock, and our kids. I have known for a long time that Caroline and the kids - but Caro in particular is the source of my strength.

So today I am starting the morning by devoting myself to thoughts of my wife: My angel, my rock, my path to centering myself, to understanding... to truth. I am putting myself in the arms of my angel, trying to find my center amidst all that is happening and all the emotions.

-Another thought-

While it might have been better if I had started this blog 400 days ago, I think it's a really smart, good thing that I've started this today. I have been using work on my project: Adding, refining, and fixing features and creating supporting documentation, and focusing on this at times so as not to think about other things in my life, such as my dad's ALS or my job, especially when I'm trying to sleep. I am hoping that blogging my feelings here will help fill the gap that being essentially finished with my project has opened.