This past month, August, is the fourth anniversary of the beginning of Janis’s journey out of her home and our life together. The exact date I have never looked up because I don’t want to know every August in the future exactly when this all fell apart. Not an anniversary I want to celebrate. But this past August 2018, (another August marker) Janis has taken another fall. (When I titled my first book I never could’ve known how apt it would be for me and her over time.) A fall for her is a fall for me. She became ill around the 8th of August with a high temperature. I was called at home in the early evening and told she was unresponsive. I drove in immediately. It takes about 40 min, I got there safely in about 30. Little or no traffic. I will skip some details here, but she did come around a little that evening, and the next day I was there early. It was thought to be a UTI. It took a while with antibiotics, but they brought the temp down. Skip ahead: Thursday the 16th of August, she still runs a slight temp and is not feeling well, I’m sitting beside her as she dozed in bed. She would awaken at times and I would hold her and let her sleep, then sit down again. At one point I looked up and she was in a strange position, I stood and could see what looked like a grand mal seizure. Her head thrown back, eyes rolled up and she was trembling. I went into the hallway and grabbed a CNA who came in after calling to the RN. The doctor on duty showed up, not seeing the seizure but making note of it she re-diagnosed Janis with Lewy bodies dementia!
Okay.
After 20 minutes of explanation and answering questions (not to be dismissive of the doctor, she did a sensitive and thorough review of what Lewy is (parkinsonism symptoms and AD symptoms) and why it is so difficult to make an accurate clinical diagnosis with dementia) I had to agree with her. Janis has a long and serious mental health history previous to any signs of dementia, and spent years with psychiatrists and therapists. The findings of Lewy bodies as a new diagnosis was just another blow. I can only say that I was glad Janis would not have to take another hit. At this stage, she has no idea what is happening in her life. She has been knocked around her whole life with all her diagnoses. So, after the doctor left and the RN spent a few minutes (kind, intelligent, and compassionate Julie, a wonderful, classic version of a nurse with a mission) comforting and answering questions–we were alone. I was in a daze. Janis was asleep. My head was churning away with all the new information. It was only later, after getting home, that I was able to let go. Could these 2 events on the 8th and on the 16th be related somehow? I spent days reading up on Lewy bodies. And one point stood out that I struggled with: a hallmark of Lewy bodies is early on in the disease there are episodes of hallucinations. I could not recall any such thing with Janis. I turned to her diaries and spent an entire morning perusing them, a hurtful trip through her tortured thinking. And there it was! She plainly described what can only be an episode of hallucinating. It was in December, 2005 a few years ago but within range of early onset. This entry she even described as an “hallucination”. She never mentioned it to me, and I never touched her diaries until after her placement in 2014. I’m certain now with hindsight, that there were other episodes of behavior problems that happened since 2005. It was confusing to me because she also had serious behaviors during our marriage that we dealt with that I see now as distinctly related to her mental health issues, not dementia. It has been a hard life for her. She bravely faced it down for years and later, when all else was failing her, she tried hard to hang on to that earlier coping mechanism as a girl, perky and outgoing. But it often came across only as strange, quirky, immature. But somehow–to me at least, maybe because I could see the young Janis there–as charming. I love her for her effort and for her courage to push back at the losses that she faced.
Four years. 4 Years! And not a moment of relief from this dementia. Janis fades with every loss. I mean, sure, there are moments thank god, mostly with my grandchildren when I can laugh, when I can see the world through their youthful senses, but in the background, and always aroused with memories small, sometimes long scenarios of what it would all mean if Janis were still with me, I realize that every little thing I do is somehow connected to Janis. Everything. I would like to use that word one more time for emphasis, but I won’t.
This morning I intended to get back to writing Entangled. However, I once again find myself avoiding the text, I scanned the draft I have written so far (about half way I think) yesterday afternoon, but I can’t seem to attend to it. Not really blocked, just I’ve got so much to write about it seems overwhelming. So I compromised and wrote here instead.
“Patience is not endurance. Patience is loving acceptance.” ~Robert Aitken
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