Tonight's picture was taken on August 5, 2009. This is a day I will never forget, because on this day we learned that Mattie's cancer metastasized 6 weeks off of chemotherapy, making his diagnosis terminal. This was news that we never wanted to hear. There was no more treatment possible and instead of fighting, we had to switch gears and discuss end of life care and helping Mattie die with some sort of dignity. Which DID NOT HAPPEN.
On this particular day, I fought to get Mattie an ultrasound and CT because his symptoms concerned me. In fact they concerned me for months, but doctors did not listen to me! Instead they kept telling me that Mattie's symptoms were psychological or he was manipulating me. In any case, between physical therapy and testing that day, Mattie and I went outside to the hospital rose garden to have lunch. Mattie posed by the art therapy elephant (a precious photo). Mattie was smart enough to know that something was going on and fed off of any reactions I had. We had a very tender time together in the rose garden and it will be a day etched forever in my mind. Mattie literally crawled onto my lap in the garden and asked me to tell the story of the day he was born. A story he loved to hear. It is hard to believe that Mattie was able to smile through any of this, but it was the beauty of Mattie which I will never forget.
Quote of the day: There are many ways of breaking a heart. Stories were full of hearts broken by love, but what really broke a heart was taking away its dream — whatever that dream might be. ~ Pearl S. Buck
Today was another winner of a day! I went to bed at 5am this morning and woke up at 9am. I was completely dazed but I could hear my mom was already up and I know it is vital that we get to the hospital as soon as possible. Mornings however are not the best times for my mom, as she needs a lot of time to ease into the day.
When we arrived at the hospital, my dad's room door was closed. The first thing I did not like! When I opened the door, he was in bed and out of it. We woke him up and as I approached him, I could smell him first. He was sitting in a huge pile of poop. Literally, and I have no idea for how long. My dad hasn't been out of bed for two days now, and is connected to an external catheter, which is quite an amazing device, as this thing is taped to him externally and it sucks up urine. In any case, I went flying out to the nurse's station and requested to talk to my dad's nurse, Angel. Seriously I did not make up this name. Unfortunately she didn't live up to the title!
I explained to her what was going on and she snapped at me. I snapped right back. We both did not appreciate each other's attitude. I loved when she asked my dad.... didn't you know you needed to poop? Why didn't you press the call button? That is when I lost it! You just need to spend two minutes with my dad to realize, he isn't with the program, can't advocate for his needs, and better yet isn't aware when he has to go to the bathroom. This is one of the things I have noticed regarding Peter's abandonment of me, it has transformed the person I once was. I am now overly tired, strung out, because I am working around the clock, my fuse is short.
As soon as we got my dad cleaned up, the medical resident walked in. It was a competition on who made my blood pressure rise higher today! He was so out of touch about my dad and his plan of care, that I let him have it too! This resident came in to tell me that my dad was being discharged today. I literally said to him.... I don't think so! I asked this doctor whether he had seen my dad get out of bed, use the toilet, or walk the hallway?! Of course the answer was NO! So I said, that my dad needed a physical therapy consult, because I knew my dad came to the hospital depleted, and sitting in a bed for two days straight is equivalent to a month for someone his age. Truthfully this resident did not know what hit him. He agreed to the consult.
Right after dealing with him, my phone rang. It was the case manager assigned to my dad. Her role is to work on my dad's discharge plan. I snapped at her too. How can there be a discharge plan without a full assessment of my dad's needs. I told her that my dad needed to be evaluated by physical therapy and that I believed he needed to be admitted to their acute rehab center, to regain strength and mobility. I learned of this center in 2022, when my dad was admitted for a pacemaker placement. Thank goodness I know the system, because I assure you the system doesn't work for the patient and has little to no interest in the burdens of the family.
I made phone calls and sent emails today to the acute rehab center, and fortunately from 2022, I know the name, email and phone number of the director of the program. Thankfully she wrote me back tonight and her team is coming to evaluate my dad tomorrow. NOTE, these individuals have the ability to override the discharge. I learned this in 2022, and though mentally and cognitively it would be better for my dad to come home, I need to make sure he is safe to come home. Which means he needs to work on getting up from a bed, using the toilet, and negotiating stairs. We shall see what tomorrow holds, all I know is tonight, I am spent on every level.
As I was writing tonight's posting, I noticed that a reader was kind enough to write a comment (see below) to me on last night's posting. Chris is another wonderful person I have never met, yet we share the loss of a child and I am honored that my words, reflections, and journey means something to Chris. As I told Chris, this comment sparked something within my heart tonight. Thank you for reading, for your beautiful message, and valuing my role as a caregiver.
God bless you. You are such a wonderful daughter and I pray that I will have someone who cares for me as much as you care for your parents when if I ever need it.. Or perhaps I will care for them so much so that I can make the decision to grant them their life and place myself in an assisted living facility. You are a gift to all you love. I understand you so. I am 72. My daughter Jillian passed away in 2010 from retroperitoneal synovial sarcoma. she was 20..We fought cancer for 4 years with many years spent living in the hospital per say.....there is no loss so great as that of our children. I somehow found you in 2010 and have followed you since. You have my thoughts and prayers daily. Chris.
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