Tonight's picture was taken on January 12, 2009. We took Mattie back to New York City to begin his experimental treatment for osteosarcoma. He could not get on this trial unless he began it in New York. The hospital where Mattie was treated is NOT a favorite of mine despite its huge reputation. In so many ways it was a factory and inhumane. All treatment was performed out in the open, sometimes in hallways. The whole place made me nuts. But this particular day we actually got a treatment bay to hang out in, which was a miracle. This experimental treatment was a nightmare. Even after the first dose, Mattie got a terrible reaction that required he come back through the ER.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 57,528,962
- Number of people who died from the virus: 831,825
Last night before I went to sleep, I did an internet search on late stage dementia. It confirmed for me the exhaustion I am seeing in my dad, and some of the issues he is having with food texture and swallowing. It is very heart breaking to see someone you love transformed by a disease. My dad isn't my first experience with caregiving, as most of my readers know. My experiences started back when I was a teenager and my grandmother had a stroke. Then there was Mattie, my friends...... Mary, Sully, and Charley, and now my dad. Caregiving is a thankless job but it can get to you at times.
Yesterday was one of the times it got to me. As I was frustrated by my dad's incessant questions, the repetition of questions, and of course some of the physical issues I manage for him. After reading last night, it helped me have a mindset change and to get perspective once again that..... this is not my dad. It is the disease that is impacting every aspect of his life. As a consequence of course it therefore impacts the rest of us.
Today the physical therapist came over to start treatment with my dad and mom. She is excellent and I really loved the exercises she gave both of them. However, what I do not like is Medicare! Medicare is a riot. They will pay for six sessions of PT/OT/Speech. Not six each, SIX in TOTAL. You know darn well that these long term physical issues can't be resolved in six sessions. So what is my conclusion!??? My conclusion is the caregiver becomes the full time therapist, after observing and learning the exercises from the PT/OT/Speech therapists. This is beyond entertaining because what this tells me is Medicare has absolutely NO regard for the role of a family caregiver. The fact is the family caregiver is already doing everything! We shouldn't also have to add PT/OT/Speech to our already full day!!! HONESTLY!!!!!
After the PT sessions, I then ran out to go grocery shopping, as we are expecting more snow. The roads in our neighborhood were finally more passable today, though still not terrific. The grocery store was a zoo and I couldn't get over seeing so many empty shelves. Most likely because of the threat of the storm and the simple fact that trucks haven't been getting through because of weather. I came home and put the groceries away and then made a snack for my parents. Then back out again to walk Sunny for an hour. This is what my days are like. One task after the other. Peter's joke tonight is that I could have been in the military, I guess because I run a tight ship here. I am all about planning, scheduling, and directing.
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