Tonight's picture was taken in August of 2008. Mattie was outside in the hospital garden showing a rock to his cousin. In fact, these rocks were all around the medical library. Mattie absolutely loved escaping from his hospital room on a nice weather day to meander around the garden and to check out these rocks. I must admit, that one day Mattie took a stone from this area. To this day, this stone is our door stop! Normally I wouldn't allow Mattie to take anything that wasn't his, but it was a bad day (in a sea of bad days) and I could see holding one of these rocks and taking it with him made him feel happier. When caring for a child with cancer, you do just about anything to make the day just a tad brighter.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- number of people diagnosed with the virus: 4,818,328
- number of people who died from the virus: 157,930
Eleven years old today, our world changed forever. This was the day Mattie's diagnosis turned terminal and we learned 6 weeks off of chemotherapy, his cancer spread everywhere. I will never forget that moment in time! Mattie was practically emaciated and was complaining of constant pain. Instead of doctors taking us seriously they told us that Mattie was being manipulative...... developing an eating disorder and was addicted to pain medication. Literally I wanted to lose my mind and in the process I had a 7 year old who was in pain. I demanded scans, scans that doctors did not want to do. So they started with the lowest of assessments..... a sonogram. I can still remember the tech doing the sonogram. He literally asked me what kind of cancer had Mattie been treated for! I knew that wasn't a good sign. We never made it out of the hospital that day, because once the doctor got the sonogram results, we were shuttled to do a ct scan. It was a day filled with great stress, incredible advocacy (a mom fighting a hospital system) and of course the deepest sadness knowing that we would outlive Mattie. I wanted the doctors to prove me wrong, but unfortunately MOM KNOWS BEST!
Meanwhile, today was a challenging day. For various reasons. It is very unsettling to have people coming into your home non-stop, managing phone calls and demands, and at the same time trying to keep things stable. The straw that broke the camel's back was when the caregiving company called me to tell me that one of the three caregivers took another job and won't be coming back. This happened to be one of my dad's favorite caregivers too. I was actually surprised by her behavior, because I literally saw her yesterday. She made NO mention to the fact that she took another job! To me caregiving is NOT like a regular job. It can't be because you are working with vulnerable people who need care and compassion. A caregiver has to know that patients bond with them and a family relies on them! Therefore, I truly take her decision to leave personally!
But at the end of the day, it is a doggy dog world and people who do what is in their best interest. I don't blame her for leaving per se, as we all have financial obligations and have to do what works best for ourselves and our family, but to me there is a certain respect and regard one must have when working with people. Kindness and common courtesy would be nice. Though I can see this is too much to ask for clearly! I will get over her behavior and move on, but what I see is caregiving is a very transient business. I had no idea that caregivers can actually work for MULTIPLE caregiving agencies. Therefore, they truly are in control and have no allegiances to one agency. They instead bounce around from one job to another as better opportunities arise. Great for them, not good for the patient and family, who rely on consistency and develop a bond and rapport with the caregiver.
In June, I thought we put together a good team of caregivers and I was hoping this would help stabilize things at home and help my mom. Instead, in a way, it complicates the situation. Caregivers are needed, but I am very aware of the fact that caregivers are doers which is good, but as they are doing, my dad isn't! My goal is for my dad to regain independence, but if he is independent then a caregiver and the agency have no job, and lose our money. So in a way their goal and my goal for my dad are VERY different!
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