Tonight's picture was taken in January of 2009. Mattie posed for a photo with some of the art work he created for his hospital door. This was the outside of his door. We may have been living in the hospital, but Mattie's room was always festive, filled with activity, and art work. I remember move in and move out days in the hospital. Peter and I had about ten bins filled with our things that we needed in order to live in the hospital. One or two bins were decorations. Every time we were discharged, I would have to pack up Mattie's room and Peter would move all the bins to the car. We had the same procedure for move in days too! I assure you this wasn't easy logical wise, but we learned quickly what we needed access to in order to live in the hospital full time.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 70,070,539
- Number of people who died from the virus: 864,304
Just when I think the days can't get worse, of course they do. I got up this morning and literally I had to drag myself out of bed. After which I went downstairs to make breakfast. While in the kitchen, something in the refrigerator spilled all over me. So for most of the morning, I smelled like mushrooms. Then I went to grab a box of blueberries and the whole box fell all over the floor. I knew this was a sign that this wasn't going to be a good day, and I was right.
After breakfast prep, I went upstairs to wake my dad up, shower him, make the bed, compile garbage and collect laundry. While my dad was showering, he literally pooped in the shower. He has done this before, but today's gift was over the top. Needless to say, later in the morning I had to scrub the whole thing down with Clorox, including the bath mat. While doing this, I somehow fell backward and though it hurt, I had to get up and keep on going.
While my parents had breakfast, I ran outside to meet our gardener to discuss bushes we want planted for the spring. Now that we have a new metal fence between us and our neighbor, to me the backyard looks like a jail. I want to correct this by planting bushes/trees. In addition, we are changing the front flower bed which is in the shape of a kidney. Delightful no? We will work to change it into an oval and plant grass to correct for the kidney shape.
My biggest bone of contention is my mom wants to go out daily to eat. They like going out at lunch time for a big meal. That wasn't a problem in Los Angeles when it was just the two of them, but Peter works Monday through Friday, so if we go out he isn't joining us. In addition, if I eat a large meal mid day, there is no way I can eat dinner, which means I am not cooking. Which also means that Peter isn't getting dinner, eating a balanced diet, and worse we aren't eating as a family. This drives me up the deep end. This is in addition to NOT having one minute to myself. I think because I am a prisoner in my own home, when I took my parents out today, I was like a ticking time bomb ready to explode. I got so angry at lunch that I literally wanted to get up, walk out, drive home and leave them there.
Today was a very frustrating day, on top of many other frustrating days. Even if I had a caregiver for several hours this truly wouldn't help. As this is a 24/7 proposition, with no breaks, no independence, and no freedom. When I discuss the need for a break or time with friends, I am met with great opposition. So to me there are no solutions. All I know is I am dealing with so many impossible things. Not just daily tasks, the intense physical demands of caregiving, but I am dealing with a host of cognitive issues. It is the dementia that frankly could make me absolutely crazy! Crazy I tell you!
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