Thursday, July 10, 2025

Thursday, July 10, 2025

Tonight's picture was taken in July of 2008. Literally weeks before Mattie was diagnosed with cancer on July 23. That day we took him to Roosevelt Island. A favorite weekend spot of us to walk as a family. Literally we went to the Island in every season! Mattie did not mind the cold or the heat! No trip to the Island was ever complete without Mattie coming home with a piece of nature. It could be a rock, an acorn, a branch, or something he found while walking. I can't tell you the amazing collection of items we used to have outside our deck door in the city. It was filled with Mattie's findings and in essence a visual of our adventures together.  

Quote of the day: In a futile attempt to erase our past, we deprive the community of our healing gift. If we conceal our wounds out of fear and shame, our inner darkness can neither be illuminated nor become a light for others. ~ Brennan Manning

It was a long night in the emergency room with my dad. Thankfully it wasn't a busy night filled with patients, so literally within thirty minutes of checking in, we were escorted back to an ER room. However, as I entered the room, there was stuff all over the floor and the trash receptacle was NOT cleaned out from the previous patient. So I could see IVs and an emesis bucket in the trash. Truly not appealing and also not hygienic. My mom insisted on coming with me so before I could take my dad to the hospital, I had to pack snacks, hot cider for her, hot hands, a heating pad, and blankets, because she is always notoriously cold. When I arrived at the ER, it was a show. Because I had to get a wheelchair for my dad, I had my mom holding onto me, and I was carrying bags, blankets, and way too much. I almost had a melt down in the parking lot, even before entering the ER. But truly who cares if I have a meltdown? Instead, like any caregiver, you plow through it, because you have no other choice.

Typically in previous ER visits, and remember I was just there in April, when my dad had sepsis, we meet the ER doctor right away. Last night, I never met the doctor, until hours later, and that was only after I demanded to see her. I should have skipped that step because she was a nightmare. She and I were like water and oil. She had an attitude and was condescending! She is all about the data and could care less about my perspective and observations. After all, she may have and understand her data, but she doesn't know the patient like I do! 

She ran my dad through a chest Xray, then a chest CT scan, countless blood work, urine analysis, and so forth. First she was worried about a heart attack and then a pulmonary embolism. Which explains all the testing! I was primarily worried about pneumonia. Once the lungs were determined not to be filled with fluid, she then focused upon a urinary tract infection. However, she never put my dad on IV fluids, so how she thought she was going to collect urine was beyond me. So I had to advocate for IV fluids, then they did not understand that my dad was incontinent. Therefore if they wanted urine, they had to catharize him. Seriously it was like they never cared for a 90 year old before! I love when they start instructing my dad, no matter how many times I told them, he isn't an accurate reporter and can't track their conversation, they continued to go around me. That is when I truly was getting upset.

Now if that was the only nonsense I faced that would have been bad enough, but there was a young adult in the ER, stationed right outside my dad's room who was a drug addict. She was detoxing and it was horrific, painful, and VERY upsetting to hear. Not just for a few minutes, but hours. This girl was screaming, howling, pacing, and demanding drugs. I literally asked the healthcare team why they were not giving her a psych consult. One of them said to me..... this isn't a psych issue but a behavioral issue. That she was showing off to her family and vying for attention. Now there may have been 1/16th of truth to this, but truthfully it did not take a rocket scientist to understand that she was having withdrawal symptoms and you could hear her desperation! Where was the compassion for this patient and for ALL the other patients who were witnesses?

This reminded me of the vicarious trauma (secondary trauma) I endured when Mattie was in the hospital undergoing treatment. It wasn't just his journey I had to absorb, but I had to hear and witness countless other moments of suffering of other children! I will never forget the first week we were in the hospital. The whole experience was new to us and we were so worried about Mattie's first chemotherapy treatment. One night, the child in the next room died. The screaming, howling, and sobbing remains in my head and heart. The only way to drown it out was to put a pillow over my head. Last night's situation with this young girl transported me right back in time to that first week Mattie had chemotherapy. Trauma is an interesting thing, because you may face it and process it, but like a groove on a record, trauma gets ingrained within our DNA. 

My dad's medical data showed a high white blood cell count and blood and white blood cells in his urine. Not to mention he was running a fever, was very weak (so much so that I am now lifting him up from chairs and the commode -- and he isn't light), and extremely congested. Yet all that said, the ER doctor would not admit him to the hospital. Instead, she discharged us at 4am! A 90 year old discharged at 4am!!! My dad was so disoriented, it was ridiculous. What I have concluded, and I told her as much, is that she has NO respect or compassion for the family caregiver. She dismissed me and did not take the insight I have on my dad seriously, because I wouldn't be taking him to the hospital if me and his primary care doctor did not think it was merited. 

Between everything I have faced these past two years, having to split Mattie's ashes on Tuesday, and this total disrespect by a medical provider, I was NOT in a good mental state when I was driving home at 4am. First off, I am exhausted, but second, for two minutes, I thought my life is so miserable that I could drive off the road right now, end it all, and it would be done. Of course, that was a fleeting thought, as I had my parents in the car, and had to get them home safely. 

By the time I got home, and got my dad settled, and I did my evening chores, I went to bed at around 5:30am. However, I had an appointment this morning with Steve, the man who helps me with lights, irrigation, and other outdoor tasks at 8am. Which meant I got up at 7am. I have no idea how I am functioning today, especially since I had a full day of caregiving on my plate. 

Later in the morning, my dad's primary care doctor called me. I had been text messaging him all along, and showed him data on my dad's portal last night as it was coming in. Any case, he called today to tell me that he did not agree with the ER doctor's decision to discharge my dad. He said he had enough issues that merited hospitalization. Any case, I have been taking my dad's temperature, oxygen saturation level and heart rate throughout the day and sending it the doctor. 

The main highlight of my day was talking to Steve. When he arrived I asked him to help me with Jack. Who is Jack? Jack is the rubber fig tree you see in this photo. Jack is special to me. He was a tiny plant (like knee height) that was given to me by two of my friends right after Mattie died. That means I have been cultivating this tree for 16 years. Unfortunately to my dismay, Jack died. I tried everything to bring him back to health, but it just wasn't possible. Seems very symbolic of my life. I did not have the heart to remove Jack from this pot. So I literally rolled Jack to the front door and asked Steve to deal with it. He did and he cleaned out the pot for me. He said this gives me the opportunity to pick another tree of my choosing to honor Mattie. Before Steve left he said to me that he always loves visiting my property, because he can tell the time and attention I put on all the plantings. He said my gardens are beautiful and coming onto the property is like being transported to a tranquil and peaceful location. His feedback made me smile and I literally was clapping! Clapping because here I am one tiny person, taking on almost an acre of property single handedly. He is the third person this week who has called me either ONE STRONG WOMAN or SUPER WOMAN (which is what my dad's physical therapist calls me!).