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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

Hey, if you are a follower and know what this entry is referring to, well good. If you are not a follower of this Blog, just know that there is some background to this weird looking entry that you missed.

I finally figured out how to provide the link to the ACE Study site.  (Ah…also known as Cut and Paste theory? As the kids say, “Duh”.)  As you can tell, there is a lot of luck involved in getting this Blog off the ground.  (As Stephen King put it, our generation grew up ‘page oriented’, this generation is ‘screen oriented’). But I’m getting better at it. (Okay, just in my own defense, I haven’t really spent all this time trying to figure out how to cut and past that link. I’ve been busy.)

The Ace Study is a remarkable, longitudinal study out of the Kaiser Permanente Medical Program in San Diego, encompassing thousands of participants, over years. It is a correlative study, and so overwhelming in scope it is almost breath-taking to see the connections. See the link below. (Oh, and It’s free. Imagine that. Something for free.)

I found that Robert Sopolsky’s recently published book, BEHAVE, (Not free. But worth every dollar) provides a substantial body of research into the brain and abuse, that is a good supplemental text that dovetails into the ACE Study. But with a more neurological look at the brain, answering the questions of how and why?

https://www.cdc.gov/violenceprevention/acestudy/

It’s not necessary to read the entire study, but if it is your interest, if you have experienced childhood abuse or know someone who has, or not sure that you were abused as a child (you’d be surprised how some people missed seeing it as abuse), this is the place to be. This study, and the trainings several years ago with Dr. Felitti, was a hallmark event in my work and life. It helped both Janis and me understand what happened to Janis, and hence to us.  Sopolsky’s book put the how and why into place.

The next posting, Part Three, will be about the ACE Study (not the study itself), another brief read on Sopolsky, and a little summing up of Parts one and two.

Then back to the Blog. And Entangled.

I’m slowly making progress on this work. I still have only a loose idea of the structure the text will take. I am subtitling it A Compendium Of Us. For now, anyway. I will attempt to work more on this Blog as I work on the book. This entry is taken from the Introduction.

Entangle.
I was surprised when I looked up the definition to find mostly negative sounding definitions for this word. For example (hard copies, of course) Merriam Webster Dictionary: tangle, confuse. I went to Roget’s 21st Century Thesaurus 2nd edition: bewilder, burden, complicate, puzzle, interweave (less negative), intertwine (better). When searching for a word that somehow grasped the nature of our relationship for a title, I selected entangled, because I understood this word as a mostly positive term. I view our life, my life with Janis, together as something like braiding or weaving, ancient-sounding terms that seem, strong, gentle, loving, and sharing. I understand this is a romantic portrayal, and I am aware that it also has its shortcomings. I also considered symbiosis as a title. However, it sounded too perfect, a botanical-sounding term (“mutually beneficial”) that left little room for the imperfections (not always mutually beneficial) that occur in any long-term relationship. So,in my definition entanglement embodies mostly positive elements, with the understanding that there is always room for human missteps.

[Journal entries are nearly all written contemporaneously  during visits while Janis sleeps, or shortly after leaving her. I confess that I am reluctant to include the really unpleasantness of some visits. For example, when she has been encopretic, and needs to be cleaned up and changed, or requires a shower. Her behavior is extreme and distressful. And though I’ve tried to deal with this myself, it requires 2 people to safely attend to her.  And the emotional level is unbearable. I now let staff handle this. I leave the area so that I can’t hear her. Nevertheless, I will attempt to be as candid as I can while respecting Janis’s dignity, for the sake of presenting an honest presentation of dementia. Of course, when the book is edited some entries may not gain entry. As I have said before in other places, with the writing and publication in 2005, of A Certain Fall, and the training modules that we conducted, Janis made it clear that she wanted her experiences with trauma to be of help to others where possible. So I work on Entangled with that in mind.]

For you Janis. I love you.

5/19/2017 Friday

Yesterday, my self-imposed day off, it was 95F. and humid, and nearly that in the apartment. I installed the AC and ran it all day. Today it is 80F. I am at the unit with Janis now. The power went out here just a minute ago. I got up and checked doors (fire doors release when power goes off). Staff were hustling but did not seemed overly concerned. I went to the Nurse’s Desk. They were checking, but no answers yet. All seems okay. We will wait for a few minutes.

When I found (power just came back on) Janis this a.m. she was curled up on someone else’s bed. Not unusual. I went to her room and dropped off my stuff. When I returned to the room she was napping in, she was standing, back-to-me, staring at the room and appearing a little confused. I touched her shoulder, she turned and burst into a smile, she hugged me and mumbled something incoherent. We kissed. She called me by name,”Bobby.” First time in a long while that she has used my name. Later, we went to lunch back in her room instead of the Dining Room. This is private time for us, although we sometimes eat in the Dining Room with the others when Janis is inclined. After lunch, (roast chicken with gravy, mashed potatoes, string beans, yogurt, pie, and drinks) she looked up at a photo on her wall that came from our living room at home. It was something she had put together in a frame. A picture of me and her at about the ages of 9 or 10 on either side of a photo of our three children, Stacia, Bo, and Maya. I always liked this framed capture of our children between their 2 parents as children. Janis had a real talent for creating something special out of ordinary objects.  I took the photo down and handed it to her. She tried to express herself: “This is (moving her hand across the photo)…this is, all of it…Everything!” She was matter-of-fact, not emotional. She seemed to want to convey to me that this was important to her. Later on, as she started to doze off, I leaned close to her and mouthed (“I love you.”), “I love you too,” she whispered. A small smile. This was more talking than she had made recently: a random moment where the neurons fired someplace in the correct order.

6/10/2017 Saturday. Hot and Sunny.

Janis had a major yelling, screaming, fighting battle, while being cleaned and changed. I could hear her down the hallway. I cringe when this happens. I had tried to attend to this myself in the past, thinking it would be easier for her. But, it doesn’t matter who takes care of her at these times, she is in a full blown panic (PTSD) attack. She is assigned two very good female CNA’s now, (it takes 2 people).

I met Janis as she walked out of her room. Crying her heart out. I grabbed her and she clung to me. “I don’t…I don’t…my husband…” She weeps, then, “I can’t do this. I can’t do this.” A refrain since she was placed. It leaves me weak in the knees. I held her to my chest, stroking her hair and speaking directly into her left ear (no hearing in right ear and questionable hearing in her left), I speak loudly into her left ear, “You’re okay. I’m here. I will always be here. I won’t forget you. I won’t lose you.” Later, after she had calmed, I held her and we slow-danced easy and with familiarity, while I sang You Are My Sunshine directly into her left ear. She Beamed! Her whole mood changed. And later, we watched an old B+W Mickey Rooney and Judy Garland film and she laughed at least a half dozen times, loved the choreographed dance scenes. A little more verbal. Ate a full lunch today.Walked the hall a little for the exercise. She tires easily. Her gait has changed dramatically. She has trouble with stairs. Her steps are child-like and weak. She went to bed in her room. I stayed and held her hand until she was asleep. I left.

6/15/2017 Thursday

There’s a Team Mtg later today. I visited Janis before the meeting. She is very sleepy lately. Sleeps much of our visits away. But I hold her hand. Today, I crawled up onto her bed beside her to rest. I’ve been very tired all week this week. I spooned with her, and I fell asleep. I awoke holding her close. We had slept for at least a half hour. We had cuddled and slept together for the first time in 2 1/2 years.

Notes from the Team Mtg. : No changes in her meds recently. She has been off  the anti-psychotic med for sometime now and doing okay. Her kidney is still at stage 3. No significant change. Thyroid okay. She weighs 134, gained 1 lb from last month. Mood has been better. Doing better at her regular shower periods. But still panics when soiled and cleaned. Her morning washing and dressing has been less contentious. Good appetite, esp at breakfast. Lost a lot of verbal interaction. Almost non-verbal. Her gait has deteriorated to a very slow pace. Sleeps a lot.

~      ~      ~

[The book I am attempting is titled ENTANGLED. It is a compendium, subtitled: ‘All That Was Us’. I am struggling to find a format that makes some sense. It will include some journal entries, some biographical material, some thoughts and essays on related topics, some poetry, excerpts from Janis’s journals and diaries, and some of her miscellaneous notes. The cover, I hope, will be a painting of hers that I consider one of her best. It’s titled SIX LEAVES, and its simple beauty is its charm…much like the artist herself. ENTANGLED will be self published through Create Space at Amazon. ]

website: http://www.robertwchapman.com