Tonight's picture was taken on August 6, 2009. This is a day I will NEVER forget. The previous day, I learned that Mattie's cancer had metastasized. On the following day, we met with Mattie's oncologist to talk about end of life care. An absolutely horrific and heartbreaking conversation! You think we live in the 21st century, where we have access to all sorts of medications and treatments. Forget it! Cancer care is still lacking, especially for children. While Peter and I met with the oncologist, Mattie was being entertained by his therapists and Kathleen (one of his inpatient nurses) who came to the clinic to visit with Mattie. This photo was taken when Peter and I returned back to the clinic after our doctor consultation. As you can see, Mattie was studying our faces very closely because he knew something was up!
Quote of the day: When you are standing in [a] forest of sorrow, you cannot imagine that you could ever find your way to a better place. But if someone can assure you that they themselves have stood in that same place, and now have moved on, sometimes this will bring hope. ~ Elizabeth Gilbert
I appreciate the sentiment of tonight's quote, but I am too hurt to see the forest through the trees. I see very little hope. Since Sunday, I have been working very hard to manage my home, my mom, and my dad in the hospital. I have pulled 8-9 hour days in the hospital and I am exhausted. Mind you I started depleted. But I know how hospitals work. It is hard enough being cognitively intact and surviving a hospital visit. It is much worse for patients with dementia. I am quite certain if I wasn't so present and vocal, my dad would have been left unattended and in bed throughout his stay.
When I arrived at the hospital this morning, his nurse, Paul, got my dad out of bed. He was already sitting in a chair when I got there, which was lovely. Way to go Paul! I think my assertiveness yesterday got the point across to his medical team, and that was, MY DAD MUST GET OUT OF BED daily. The longer my dad remained in bed, the harder it would be to get him mobilized and more independent.
Though I fought a valiant effort, I could not get my dad into an acute rehab. They all felt that he was too high functioning. Which is hysterical, since his own hospital's acute rehab center felt that my dad did not have enough energy to manage three hours of therapy a day. So which is it..... too high functioning or too depleted?!
Though we scheduled his discharge for noon today, I did not get him in the car until 3:30pm. It is the beauty of hospital time. The 3:30pm discharge also would not have happened if I did not ride the staff for two hours. I changed my dad into clothes myself and packed up the room. So I meant business.
After I got my dad settled, I did chores, made phone calls about follow up care, and then ordered food. I am very lucky to have some many wonderful friends who have given me gift cards to door dash! It is thanks to all of you, that we had a lovely dinner tonight. I just did not have the energy or wherewithal to cook.
This evening, I will attempt to get my dad up the staircase. Thankfully his physical therapist is coming tomorrow morning and I will get her assessment.
I am signing off this evening and feeling distraught. Somehow the house seems very lonely and I realize I do not have my other half to help, for support, and to assist me in managing the countless things I do each day. I would never leave even my worst enemy in such a fashion, and I am quite certain being a devoted wife for 29 years, I did not deserve this.
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