Friday, December 12, 2025

Friday, December 12, 2025

Tonight's picture was taken in December of 2003. Mattie loved going to Los Angeles. It was a real adventure for him, especially in the winter months, where it was so much warmer than the East Coast. Since Mattie was all about being outdoors, this was the perfect Christmas escape for him. As you can see from this photo, he was practically dragging my mom..... when Mattie had an idea in mind, he was all business and he wanted my mom to catch up with his plans!

Quote of the day: I felt her absence. It was like waking up one day with no teeth in your mouth. You wouldn't need to run to the mirror to know they were gone. ~ James Dashner

Is it possible for me to get more distraught? The answer is YES! Today, I thought my heart was going to jump right out of my body! I knew I couldn't get to the hospital early today, because I had a pre-arranged appointment to get my Prolia shot. I have learned the hard way that not taking this drug consistently impacts my bone density score. So given I was told that my dad's physical therapist wasn't coming back this week, I did not feel the stress and pressure to get there early. When I went for my shot today, they had me sit in a recliner and they take my blood pressure and basically have me relax. What a concept. My blood pressure was so low, I wondered if I was alive! Any case, sitting still for ten minutes and listening to the soothing music they had playing was therapeutic. How many people can say that going to get a shot is like going to a spa and is therapeutic? Probably not many, but this forced break was wonderful and I was hoping that feeling would carry me through the day! I am not sure why I even think this, or have the hope for peace, because it just isn't my destiny. 

When I got to the hospital today with my mom, his nurse came in and gave me the good news that my dad was going to be admitted to the hospital's acute rehab. This program is run by my dad's doctor and my dad already went through this program twice before, so it is a known quantity.... which is vital for my dad, who suffers from moderate dementia!

Literally after hearing this news, I was breathing a sigh of relief. I could feel the tension go out of my body, because this program forces him to work three hours a day with therapists, who help him rebuild his strength. NOTE that my dad came to the hospital walking, yet after countless transfers from beds to scanning tables, he developed muscle pains and spasms. In addition, he has been kept bed bound for a week, and is therefore stiff and weak on top of having muscle pain. After 90 minutes of learning that my dad was going to be admitted to the rehab unit, my dad's case worker came into the room. She let me know that a physical therapist did a re-evaluation of my dad today (so I was given misinformation yesterday, that she wasn't coming back to evaluate him) and it was deemed that my dad will not qualify for the rehab center. Criteria is determined by Medicare, naturally, and if criteria is not met, Medicare will not pay for this care. Naturally I was confused as I was told he would be admitted 90 minutes earlier. 

This case worker truly did not know what hit her today. By the time I finished with her she was teary! I basically told her that if the medical team releases my dad to a nursing home, this will be the beginning of the end for him and I will hold them all accountable for his demise. I was literally so upset that I was screaming. The charge nurse came into the room and was present for this conversation. She happened to be a bright and sensitive woman, so was quickly connecting the dots about our case. She pulled up the PT notes from today and the therapist basically documented that my dad elected not to get up, he wanted to rest in bed. The charge nurse said that as healthcare providers they are required to listen to the patient's desires and wishes! That is when I lost it! Certainly I can appreciate that decision if you are talking to a rational and cognitively intact individual. But my dad is NOT competent to make any important decisions for himself, which is why I am his medical power of attorney. I made it clear that all questions and decisions have to be run passed me. I also demanded that my dad get re-evaluated by the physical therapist in my presence and if I have to appeal the decision to discharge him, I will. Which I believe will buy me the weekend (maybe). 

My dad is weak and his muscles ache. If you ask him to move, he will naturally say.... no I do not want to move. I tried explaining to my dad tonight the importance of complying and I told him how he would be assessed. But frankly it is like talking to a sieve. Information goes right through him and he can't understand the importance of giving it his all with the therapists. Truly tonight I wanted to jump right out the window of the hospital. I was so distraught working with a system that doesn't understand the complexities of older adults, a system that could care less about the family caregiver or seeking our insights and perspectives, and a system that leaves a 90 year old bed bound for a week and then expects that on an assessment, he will just bounce out of bed and comply. What kind of world do we live in? 

The notion of my dad going to a nursing home will just about kill me. I have done everything I can possibly do to keep him healthy, active and living within the community these last four years. Now when I turn to a hospital for help because he presented as confused and disoriented on December 6, I am left with a patient who is more debilitated a week later than when he entered the hospital. Whenever my dad is in a hospital or rehab, I work even harder than when he is home. Because I basically have to move into the facility to oversee him and his care. Not only is he an older adult, but he is cognitively vulnerable! 

Tomorrow, my dad is seeing a physical therapist again. I am getting to the hospital earlier and I had them make a note that the therapist can NOT do the evaluation without me being present! All I can say, is GOD help me and help me manage this situation. As I was driving home, feeling distraught and yet having to keep it together for my mom, I said to myself..... I MISS being MARRIED! I MISS having another competent body and mind to bounce problems and ideas off of, and I MISS NOT FACING THE WORLD ALONE. I am ANGRY, DISTRAUGHT, and UPSET and it takes a great deal of inner strength not to let these feelings that are by-products of childhood cancer, child loss, a horrible divorce, and caregiving, fully consume me.