Tonight's picture was taken on September 1, 2009. I will never forget this day. Peter and I were struggling about Mattie's end of life care. We weren't sure whether Mattie should die at home or in the hospital. What happened? Mattie decided for us. He was in so much pain that he asked to return to the hospital. By that point, it was like our second home and he intuitively understood that he needed much more care than we could provide him at home. This photo was taken in the outpatient clinic, where Mattie was then admitted to the hospital. His art therapists gave him this remote controlled dinosaur and they were desperately trying to engage him and keep his mind off the horrific pain he was in. You can see that Mattie looked very sick and out of it. He was attached to a pain pump, but we got to the point that no amount of narcotics could relieve his suffering. This memory will remain with me always.
Quote of the day: There is a fine line between challenging yourself and overwhelming yourself. ~ Brittany Burgunder
I am proud to say that there are now Psychosocial Standards of Care because of Mattie Miracle and ultimately because of Mattie Brown and his experience!
Back to dropping my dad off at his memory care center in the morning.... once that was complete, I went to mail my mom's things, filled the car up with gas, and then went to the grocery store to buy fresh fish. I am trying to do Fish Fridays at home. But fish is that kind of protein which I won't let sit around in the refrigerator. So that means schlepping to the store. Once I brought it home, I prepped the fish and other things for dinner, so that I wasn't scrambling later in the afternoon.
Once that was done, I folded the laundry and helped my mom with paperwork. Then I got her into the car and off we went to therapy. Once her session was over, my mom wanted to go out for frozen yogurt. I thought I would have time to manage this before picking up my dad. But we got stuck on the highway for an hour because of a car crash miles ahead of us. By the time we got off the highway, I decided to run home first to pick up the tote bag I use when I have my dad in tow (it has a change of clothes, depends, wipes, etc). I was going to chance it and take my dad for frozen yogurt without the bag, but then reality set in. So I went home first. When I saw Peter at home, I asked him to pick my dad up and take him home, because I just did not have the where with all to do it all today. Therefore, I was able to take my mom out for yogurt without my dad with us.
My mom has now convinced herself that she wants to go away on vacation. Though I would love to do this, I continue to provide the reality check on our situation. My dad doesn't have the stamina to travel anymore. He also has no interest to do this either. If dealing with his dementia isn't hard enough, then his dementia combined with irritable bowel syndrome, is truly over the top. I literally can't figure out how I could take them anywhere, without assistance, and someone to stay with my dad while I toured my mom around to see friends. So without a plan, I am not moving forward with this request.
My world maybe moving in twenty directions, but I will never forget September 8, 2009. The day our lives permanently changed forever. I can't believe that Mattie will be gone 14 years. Around the anniversary of Mattie's death, we always visit his memorial trees and decorate them.
Since September is childhood cancer awareness month, and the awareness color is GOLD, I am happy I was able to find a few gold ornaments. But the theme here is really the SUN and Sunflowers. Mattie LOVED drawing and painting the sun and I love sunflowers. They remind me of Team Mattie, who gave me plenty of sunflowers between hospital admissions. Therefore, these ornaments resonated with me for the tree.
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