It’s been quite some time. I got a notification that my subscription was renewed and as I went to cancel it, I thought, ‘I wish I would have kept up with this.’ Less than two months after my last post, my dad had a seizure he did not recover from and passed on December 16, 2021. We knew we did not have a lot of time, but we thought at least 6 months, not 6 weeks. He was just put on home hospice care and two days later he had a two hour seizure. We decided to then put him inpatient hospice care. For nine days it looked like he was sleeping, only moving or slightly moaning when I cried while laying on him. Nine days without food or water and he held on. I know he didn’t want to leave us. They say when someone holds on that long they have many things to work out before they leave this earth. And I believe that about Dad. He was a strong man and I believe he had to work some things out before he was ready to go. My partner, mom, and I stayed there 24/7 for 6 days until some delirium of some kind set in and we needed to get out of that small room. The nurses told us that sometimes people need to die alone. She clearly didn’t know my dad – I sat with him for hours in every emergency room, every hospital bedside, every waiting room before radiation treatments – he never wanted to be alone. Before he lost his ability to speak, he’d call, “when are you coming?”

I’d do it all over again and again if it meant he would get better and we could have more time..

Anyway, we decided to leave the Hospice room. Going back to their apartment afterwards was torture. I sat down on the couch where he would lay, frail, and under a blanket – and I just lost it. I just cried and thought: He should be here! He should be here! It was too F@#$%ING SOON!! It’s indescribable the kind of pain that comes with that. There is no amount of preparation that prepares you for that.

Tangent: I think friends and other family, tell themselves (and then told me) “well this is a part of life” or “well you. knew this was coming.” I wonder if they actually think that that relieved any modicum of excruciating pain that was running through every corner and through every bone of my body? Did that make them feel better to dismiss the loss? Did they consider the pain of the gravity of loss that would be for me? Or was that pain / discomfort too much to bare and therefore acknowledge? Losing my dad from Glioblastoma was not a “normal part of life” and nothing softened the trauma (no matter what I read to try to prepare) of watching this cancer rip him of his dignity and kill him right in front of my eyes day by day – kill him in spirit, mind, and body. A cancer that took away his ability to speak, to think, to do the things he loved to do, to eat, to walk, to make decisions, to play games, to play chess, to cook, to bake, to laugh, to love his dog, When those people said those kind of things (reminder: “this is part of life” and “you knew it was coming”), did they think of that type of gravity of loss was normal? (Newsflash: Glioblastoma is the deadliest rarest form of brain cancer). Also, my brother killed himself by suicide 11 years earlier. So compounded loss is a thing, never mind – I am left behind with a parent that I will have to care for – that has a long history of needing from me (in ways she should have never had needed me/ expected of me), since I was a child. Finally, let us not forget, my inheritance of financial pressure that has made a home on my chest. So take your dismissive condolences – if you can call them that – and step away.

I decided to go back to hospice the next day by myself. The nurses said he had been peaceful. When I showed up and gave him a hug he seemed to ruffle again which indicated that perhaps me being there was upsetting. I told him, “Dad, it’s okay. You can go. I know that after Corey died I would call crying over the years so afraid of you dying.” I’d be afraid, it would prompt me to make me drive to NY on a whim just to see for myself that he was alright. “You may be worried about that (I held and kissed his hand), and I get it. But, I’m going to be alright. Mom is going to be alright. We will be okay. You can go and rest now. I love you so so so much.” I left. And 12 hours later, he passed.

This has all come up so fresh for me because we moved my mom until some low-income housing right around the block from us. I am so grateful. And moving and going through things brings back up a lot. The kitchen aid mixer and the tool boxes he loved and will never use again, the pictures of chess pieces he had in his nook at home, the reality that Mom is starting a new life in a new place without him. The heaviness, pain, sadness that brings. I had a dream that I was telling Kaden, “I want to go see Dad today (thinking he was still sleeping in hospice).” I had to wake myself up into reality and remind myself he was gone, he was in an urn, and there was no seeing him ever again. These layers of reality hit more often than i’d like to admit. But here we are. There’s no getting over this – there is just ebb and flow – and some days – you are lucky to be keeping your head above the waves.

October 1, 2021

Drop partner off at work, drive 40 minutes to parent’s house, fight with mother, work meeting (feel completely incompetent to keep up with everything), zoom meeting with an estate lawyer with my mom designating who does what when death leans against the door, rush out the door, while on my 40 min drive back home call and tell my partner I can’t give them the car after all (insert guilt imposed onto me by me), rush to staples because I need to start organizing all of the parent paperwork that continues to pile up in random corners of my office (probably should pick up some work organization tools too since that has totally shit the bed), and rush home to a department meeting and feel pressured to put my camera on because I know my chair prefer this, and scroll and see an irritating co-worker who is historically a completely tone deaf (not to mention self-centered, attention seeking, privileged) annoying person. This is the moment I would like to direct all of my anger at her because she is annoying but I will not since that is not what this blog is about. I’m sitting in this meeting. Angry. I want to throw my laptop against the wall. I want to eat something. I want to walk outside. I want to paint. I want to get my parent’s shit organized because I feel like I am losing track of that too. I need to work on that CME presentation, and then that AACOM presentation, and that AACOM presentation abstract. I am angry. I am overwhelmed. I hate this. I hate HATE hate this.

September 30, 2021

Urologist Office

Customer service. Is this too much to ask for? I think this to myself as I wait by the receptionists desk, one on the phone and not looking up, and the other face down in her keyboard. I stand there, walk up to the window and continue to stand there. If looks could kill, the place would have exploded. (No, I do not have any plan or intent to hurt others). Already running late, because they told us the wrong building and then the wrong suite number. Meanwhile, my weakening father is out of breath from all of the searching for this goddamn office. He’s thinner now, hunched over, over grown beard, using a walker, and even that does not seem to be helping his efforts to move. We will need a wheelchair on the way down to the car. Finally, someone acknowledges me “oh hi! I didn’t see you standing there.” Well of course, you wouldn’t…how could anyone see who is in front of them when they have their head buried, almost resting on their desk. I hate everyone. “Yes, my dad has an appointment, we are running late because no one told us where the building was, three different people told me three different appointment times, and then gave us the wrong suite number. Oh and let’s not forget you had your head on the desk like a kindergarten child during nap time in class.” No, I didn’t say any of that. Anyway, he has to keep the catheter in, he’s in pain and disappointed. I hate when he is in pain. More tests to come.