Tonight's picture was taken in February of 2009. I will never forget this moment in time. Mattie and I entered the outpatient pediatric cancer clinic and his art therapists greeted us with a project. They were asked to design a welcome sign to the in-patient pediatrics unit on the fifth floor. However, they wanted to include handprints of several of the children on the sign. They were expecting Mattie to quickly jump into this project, since he loved creating. But that invitation did not intrigue him until his therapists said... well how about a footprint? Mattie jumped at that chance, and I captured the process. To this day, this sign is still on the fifth floor of the hospital, featuring Mattie's footprint. I am sure most people have no idea or even think about whose footprint is on this sign, but to me, a piece of Mattie greets all the children who are treated on that floor.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 75,571,752
- Number of people who died from the virus: 893,526
Today was not a good day, period. It started with my usual tasks. But this morning a new physical therapist was coming to evaluate my dad. He was coming because I complained to the health care company. I told them that the previous therapist assigned to my dad could only work with him after 4pm. Not a good time for my dad, because as the day goes on, he fades mentally and physically. Mind you he isn't particularly strong in the morning either. Any case, to appease me, they sent another therapist to evaluate my dad, and he was scheduled to come at 11am.
Fred showed up on time and he did do a very good re-evaluation of my dad. He compared how my dad did today with evaluation notes from January. My dad is making some progress, but what they can't see is the significant decline in him from the Fall of 2020 and Spring of 2021. During those times, we got my dad to walk twenty minutes consecutively. Now we are lucky if he will walk more than five minutes. I caught the first thirty minutes of my dad's session today, and Peter did the last thirty minutes. I had to hop on a conference call that I committed to at 11:30am.
The schedule here is what it is. What set me off today was the conference call. Particularly the fact that everyone went around to highlight what they are working on, their accomplishments, and basically how busy they are. When they got to me, I explained that I have in essence become a full-time caregiver to my parents. My story and life look very different from the people on the call. They truly had NO appreciation for what I am balancing and their solution they offered me (though I wasn't looking for one) was to hire people to handle all these tasks.
Honestly I wonder how stupid people think I am? Do they think I haven't thought this through? Perhaps there are reasons that I am not pursing this right now. I remember when I was conducting my own family caregiver research for my doctoral degree, that caregivers would tell me how much unhelpful input and hurtful things people said to them about their roles. I naturally listened, absorbed what they were saying, and empathized. I am no stranger to caregiving both professionally and personally. Even when caring for Mattie with cancer, I got mouthfuls from people. It was very hard taking all that in back then and I honestly do not know how I survived that time in my life either.
But I wasn't prepared to feel this way with today's call. What it stirred up in me was irritation, anger, and the desire to severe everything I am doing right now..... from caregiving to Foundation work. Instead of having a meltdown, I was greeted with more tasks.... cooking, cleaning, grocery shopping, walking Sunny and the list goes on. What I would say is that caregiving for a child with cancer versus a parent is quite different. Caring for a child (even one with cancer) is a natural part of life, but caring for parents is not expected. All I know is non-stop tasks and demands impacts my personality, how I feel about life, the future, and in the process I can see why caregivers have told me in the past that they lost or forgot who they were in the process.
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