My father is ill. Very, very ill. He probably won’t last out the year. More likely, he’s already seen his last holiday season. I’ve been dealing with this on an intimate level for months. My writing and my mood have suffered. My sister and Mom have been dealing with it up close and personal for much longer than that. They’re suffering, too. But we’ve all been taught to “do what you have to do when you have to do it.”
My father has end stage idiopathic pulmonary fibrosis AKA his lungs don’t work and he’s not a candidate for a transplant. I visited him over Memorial Day weekend. Despite how he looked shocking me, it was a good visit and he was doing great for the time I was there. Once I left, though, he went downhill bit by painful bit until “worse” became the new normal. He was put on palliative hospice care.
Last week, Dad was moved to a hospital bed in the house. The last bed he will ever be in. His literal deathbed—and figuring out if that was one word or two really sucked. He can’t really walk anymore. His blood oxygen level fluctuates too wildly, too low. Even when he’s just sitting there. I saw him have coughing/panting fits. I thought they were bad. According to my family, no, they weren’t. At all. They say watching him in a “real” coughing fit is like watching him drown in slow motion (another phrase I never wanted to understand). It also sounds like dementia (it runs in my family on my father’s side) has kicked in.
I work to be there for my sister. She vents to me. We cry together. We support each other. I let her (and Mom) know they’re doing a good job. As much as it hurts to hear the latest update—he can’t work the TV remote anymore, he has a hard time following conversations, he gets angry and confused, he’s lashing out physically—I want to hear them. It helps me process the current and forthcoming pain. It’s giving me a thicker skin. (poetic words here about salt from tears building a scab…)
Yesterday, my sister let me know that we’ve gotten our last StoryWorth story from Dad. He needs to be medicated to such a degree that makes it impossible for him to continue. If he’s awake and aware enough to answer questions, he gets upset because he doesn't understand what's happening. He doesn’t want to answer questions and he doesn’t form many coherent sentences. Still, we got 18 stories from him. 18 out of 52 is better than 0. I’m glad I discovered StoryWorth before it was too late. I have 18 stories and a bunch of pictures that will be put in a book. Memories for the future.
My grief comes in waves like the tide. My father, who has always been one of the strongest people I know, is failing. The man I grew up with is hidden within the shell of a little old man and only comes out to visit on rare occasions. I’m happy he still finds joy in small things…his Neil Diamond CDs, his Astérix & Obélix comics that we were introduced to when we lived in Belgium, my sister and mom bringing out his silly side. But I’m sad, knowing how near the end is.
I’m limiting my time online these days as much as I can. I only have so many emotional spoons to give and they are reserved for my family and my writing. So, that’s my life for the moment.