Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment. Our team in Washington, DC contacted the NY team to let them know that Mattie LOVED cardboard boxes. They encouraged them to save some for Mattie's visit. They did and they thought that was an ODD request. Look what Mattie built while in the NY clinic. This airplane left the hospital, was placed in a yellow NYC taxi cab, and it came back to the hotel with us. Mattie wanted to take it back to Washington, DC, but we agreed to take photos of it and leave it in NY. I am quite certain the staff at this clinic quickly learned that Mattie was a unique and creative fellow and that wonderful things can be constructed from boxes that would otherwise be thrown out!
Quote of the day: Emptiness is a symptom of loss. ~ Jean-Paul Sartre
It was a stressful morning because I had to get both of my parents up and in the car by 9:30am, in order for them to make their rehab doctor appointments on time. The appointments are at the hospital, which is over thirty minutes away from us. I can control my dad's schedule, but managing my mom in the morning is hard. When she moved here in 2021, she would get up at the crack of dawn and had much more energy. Now, I think with age and also the grief and trauma we live with, I believe this has greatly impacted her existence.
We managed to get to the doctor's office and because of the cold, you should see the number of jackets and coats I juggle. My mom wears three and my dad two! To move into the doctor's office, that required the removal of all jackets and coats in order to be examined. This doctor has been working with us since 2022, when my dad was admitted for a pacemaker placement. He always greets me with a hand shake, a smile, and then asks.... how are you doing? He reminds my parents often that they are stable because of the excellent care they receive.
Throughout the year, I juggle physical therapy sessions for both of my parents. Sometimes they qualify for in-home therapy and other times, my mom at least qualifies for outpatient therapy at the hospital. On an aside, between Mattie and my parents, I have a solid understanding for how the healthcare system works, or doesn't work. It certainly is not a user friendly system for older patients!
Today, the doctor felt my mom needs physical therapy asap. So in March (I elected for the spring), I will begin once again with driving my mom back and forth to the hospital, most likely for another 8 months of therapy. As for my dad, the doctor is encouraging him to take more responsibility for exercising, but honestly within 30 seconds, my dad won't even remember that conversation. Which is frustrating. The doctor came up with a strategy where my dad would have to sign an exercise contract at home so that he would be more engaged in the process. Again, all that is great, but any time you place a responsibility upon my dad, that means it will be one more task for me to manage.
I think dementia is the kind of disease that isn't truly understood or appreciated. Because it is an invisible disease! A person, like my dad, may look good and seem functioning, but that doesn't mean that is actually the case. So many doctors think my dad showers himself, does all his basic hygiene and takes responsibility for things. Unfortunately that couldn't be further from the truth. It is a great sadness for me to see my parent's disease progressions and knowing one day they won't be with me.
As tonight's quote points out, emptiness is a symptom of loss. Loss that has happened and even loss that will eventually happen! I face and contend with all sorts of losses daily. Without my parents, I will be alone. The life that I thought I had, is gone, and as you get older, the re-inventing yourself becomes harder on every level. I already had to re-invent myself when Mattie died. It has been a hard reality having to accept that I would no longer actively parent my son and that I have missed out on every typical milestone moment for a mother. At what point is enough, enough?! How much loss and trauma does a person need to absorb? I have no answers, only constant challenges.
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