The last few weekends over here have brought a crew of happy visitors to our house (or in previous weeks, to the hospital). I look forward to Saturdays, and today we were supported by many loved ones.
I’ve noticed a trend with the way the days tend to go now that we’re back home. Mornings are hectic, high energy, and anxious for my dad. He wakes up early with my mom – sometime around 4:30, and then goes back to sleep until around 7am. He then wakes up, demands a huge cup of coffee, and makes his way into the kitchen.
His tumor makes him highly impulsive, and he’s the most demanding and fixated on things early on in the day. Today, he had my mom scurrying around the house searching for his ring of carabiners (which he’d like to use to attach odds and ends to his pack). These seemingly small demands begin to feel increasingly burdensome after an hour of searching for something that loses it’s importance for my dad as soon as it’s discovered (remember, his attention span is short). My mom and I noted how exhausted we were today from all the errands and things he wants to have in his hands. That being said, we’re not in a place where we’d say no to him. He’s largely confined to the small area of the house, so bringing the important things to him is part of the process of getting him moved in and comfortable in this new context.
We had another aid come by to help with house upkeep and supporting my dad. The additional help was certainly appreciated, but we’re still searching for the right fit. I feel ambivalent using the agency: on one hand, it solves the immediate problem and brings help to us which is so, so great; on the other hand, it feels like an unnatural relationship that I have trouble with. We’ll continue to use the service until another option reveals itself to us. If any of you have had success with certain aids, I’d love any recommendation you could offer.
Jon Zimmerman came down from Seattle to spend the day with us. He and Mike took my dad around the neighborhood for a slow stroll in the wheelchair, and noted how much more eased my dad seemed while outside. Meanwhile, I picked up some good carabiners. It was a huge help to have Mike and Jon spend some time with my dad – good for my dad to have some fresh faces, and good for my mom and I.
Andy, Kelly, and Anna came by later in the afternoon. The whole Bohn-Johnson clan is excellent at really being there on these weekends. They come with no expectation, and seek to support in all the ways they can. Today, that meant they brought some dinner along with them. I am enormously grateful for their patient, steady support.
That’s about all of the update for today – we’re moving into a routine, though it’s likely things will change a lot once chemo and radiation begin on Monday. My dad is already exhausted by this: today he went to bed around 7pm. Chemo responds differently to every patient, but it holds a reputation of exhausting those who are on it. I am bracing myself for the effects the treatment will have on my dad.
To be honest, I can’t help but wish there was a more happy medium between his frenetic behavior in the mornings, and his pure exhaustion in the evenings.
My dad’s response to our questions of what he would like to do for the day (asked to him while he was having his morning bm): “doing paperwork before I can think of anything else.”