Tonight's picture was taken in August of 2009. After we learned of Mattie's terminal diagnosis, we spent about two weeks at home before returning to the hospital and NEVER returning home again with Mattie. Mattie elected to do end of life care at the hospital, surrounded by his hospital family. Mattie made the best decision because his death was horrific. Forget hospice, they would have been ill equipped! They could never have managed what I witnessed..... as Mattie's bed was lined with countless syringes of pain meds! It looked like a war zone. Pain meds couldn't get pumped into him fast enough and then at the end Mattie needed a fatal dose of propofol to place him in a coma to die. It was a nightmare that remains a part of me. But while home, Mattie wanted to take out the big tent and he wanted us to sleep inside the tent. Since Mattie never got the opportunity to go camping (which he was looking forward to), we tried to bring camping to Mattie. What you can't tell was there was an IV pole outside the tent, connected to Mattie, and Mattie was also connected to a pain pump.
Quote of the day: It is what he made clear within weeks of leaving, that he believed my contributions to his career, to our family, over twenty years, amounted to nothing. ~ Belle Burden
Don't ask me about today! It was a complete blur of cleaning, more cleaning, and then more after that. I took my parents out to our local diner, which I do every Saturday. I toileted my dad before leaving the house, but he needed to be changed by the time we got to the restaurant. I thought I would then get a break! Nope, he went again while eating. More changing, more cleaning, more laundry. When I objectively look at my life, I just can't get over it. Any full time caregiver knows how all consuming my days are, and then add to all the chaos I have had to work through...... having to hire a divorce lawyer, learning house finances, having to work on assuming the mortgage, dealing with taxes, house maintenance, car maintenance, bill paying, running the Foundation and doing all the admin including the financial accounting, and the list goes on. Some days I wonder..... why haven't I cracked up yet?
Going out is not only juggling the bathroom routine. My dad always has a drippy nose while eating. Doesn't matter the time of day or season. His nose drips at every table. So much so that I always have a packet of tissues on the table and I carry a garbage bag to pick up his debris. But on top of the nose, I have to regulate his eating, as if left to his own devices, my dad will choke from shoveling food into his mouth. He just doesn't understand the concept of pacing, of chewing and swallowing before putting more food into his mouth. So I feel like I am constantly doing surveillance and policing at the table. Then add to this my dad's desire to pocket all the items on the table. If you don't watch him he will empty all the sugar packets, all the jam containers, and what ever smaller item is on the table and it will land up in his jacket pockets. Thankfully today, I caught him before he put ten butter packets into his pockets!
As I always say, caregiving keeps me busy and when I am busy, I don't always get absorbed in the pain of my divorce. However, while at the diner today, our server took out his phone to show me photos of his children on vacation and the fun they were having. It is simple and innocent moments like this that remind me how different I am. I do not have these happy parenting moments, in fact, putting that aside I haven't been on a vacation since June of 2021. This December, I will be caregiving non-stop for five years. In down moments, I want to scream, I want to curse the day that I was left alone to manage the impossible on my own. But since that serves NO POINT, I instead will stop writing for today and go into my garden and then exercise in the basement. I find movement is the only way that helps me push through intense grief, anger, and hopelessness.
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