Dear Joe,
I am sorry for not writing in the last 6 years, so much has happened and some of it downright devastating.
First, I want to let you know that Carl has passed away; as of October 14, 2023.
He had a massive stroke in January of 2018, was doing pretty well (so I thought) at UCSF in their care, but all of that changed when we had to relocate him to another Acute Care facility for his rehab in order to come home.
That was when the real nightmare began and did not stop until his passing.
He had been in 2 separate Acute Care Facilities, one worse than the next, before he ultimately got to come home and be cared for by mom there. Sadly, he never regained the ability to walk, speak in full sentences, or eat solid foods.
Basically, he was rendered paralyzed living in a hospital bed, in a diaper, sometimes on a ventilator, with a surgically implanted feeding tube, in the living room. I know that was sheer hell for him. You could see it in his eyes. It was hard to watch.
I will spare you the details here, but there were quite a few times he had to be taken back to the hospital due to repeat pneumonias, and a couple of times for sepsis.
This last time in September of 2023, mom was complaining of hip pain, and I noticed she was walking kind of funny, but she did not tell me that she had been falling down recently. No one else said a word to me so I was unaware that this was happening.
Finally, after weeks of me bitching at her to go see a doctor, she finally agreed to on a Sunday night.... Of course, because I have to get up at 4am for work the next day. She couldn't have gone on Saturday instead??? Nope. Some things never change.
She got x-rays done, and the nurse asked me repeatedly if I saw or knew of her falling at all. I did not.
So they sent her home with pain meds and told her to follow up with her primary care on her x-rays.
A few days later, Carl was back in the hospital and mom said that she just needed 2-3 weeks to get better (found a hip fracture on said x-rays due to a fall) so that Carl can come back home, and she can resume caring for him once again.
They both made promises to each other that they would not let one another die in a hospital.
Unfortunately, that was a promise that neither of them could keep to each other.
About a month after Carl went back to the hospital, I found mom in bed practically lifeless.
What I thought was I saw on the side of her mouth was dried chocolate ice cream, but was in fact dried blood.
She had taken so much aspirin and pain meds to take away what I thought was her hip pain, but was in fact something much bigger. When I saw her she was grey in color and ice cold.
I screamed and shook her violently until she woke up. She was delirious and confused af. I called 911 and on September 16th everything changed. I was told that my mother not only had a fractured skull (so she hit her head on something), but that she had a tumor on the back of her skull, and that she had extensive metastatic cancer that has invaded her whole skeletal system.
Hearing that just destroyed me. In the span of 2 hours, I thought my mom had died, but now I knew she was in the process of dying.
She spent about a week at John Muir where she was absolutely insane trying to keep all the pertinent details away from me. Stating that the Courts will be the ones to decide her fate, not her daughter. She was not going to put me as Power of Attorney and have me govern her care or her assets.
She appointed a childhood friend of mine instead. That friend told me that when mom passes, there are things that I need to know but not before that.
She was told by my mother that my mom KNEW she had cancer a few years back and that if she gave me PoA over her, she knew that I would find the medical information where she had a mammogram showing the beginning stage of her cancer. She wanted to die before Carl did, and this was the best way for her to do so without directly taking her own life. I guess she in a weird way did not want to sin according to her Catholic faith she was brought up in.
The fact she hid it from me was because she told my friend that she did not want to have the conversation/argument that would ensue from me especially seeing as what I do for a living (still in oncology).
Mom never came home, she wanted to come home and pass away, but she never made it that far.
Unfortunately, her worst nightmare mostly came to fruition... having to be in a Nursing Home, but I came to see her just about every day. The days I wasn't there, was because either she didn't want to see me (she blamed me for putting her there), or I was told to stay home by the hospital staff as it was taking an emotional toll on me (I had a breakdown a couple of times).
Mom was on what was called Hospice Chemo; basically it wasn't that she was going to cure the cancer but it was to slow the progression down and give her a few years to live. That is if her body could handle it.
She hung in there for 3 months, then she had to be taken to the ER for low potassium levels. That is where they found a blood clot in her lung so she could no longer receive treatment for her cancer.
The clock at that point started ticking on how long she had left, it was estimated 1 week.
She lasted 17 days; died on January 28, 2024.
I got the call from her PoA letting me know that mom had passed away at 9:15pm that night. I was there that day and noticed that she wasn't waking up, her color changed to a very pale dusty yellow, and her breathing was a bit different but nothing that I had seen or heard about on the various Hospice Nurse channels that I was binging on YouTube trying to prepare for the inevitable.
I will spare you the details of it all. Dying of cancer is cruel, and watching my mother go through that was traumatic. Traumatic for both her and I. But now she is out of that excruciating pain and that body that was failing her miserably.
I was not there for Carl's passing... Aileen was the one who let mom and I know that he had died.
They both were in hospitals when that happened. I'm sad that they both had to experience that.
As much as it sucks, I'm glad mom didn't have to wait too long to be back with Carl.
I have to believe they are together on "the other side."
Anyway, that is what has been happening in my absence... it doesn't sound like a lot, but believe me, it was.
I hope you are doing well. I think of you often.
Take care of yourself,
"Jill"
P.S. I have a new colleague named Audrey lol
