[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.
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[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. ]
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