Journal Entries from Entangled

~Journal/Diary entries are one part of a compendium that includes other text material. Diary sections of the book are not edited or proofed but are entered as-is from the original; usually written contemporaneously, or later on the same day. ~


8/17/18 Friday
I walked this a.m. at Bowdoin. Last night I drank two beers. I wasn’t thinking. (I guess that was the point.) It was stupid…what if I had been called in again? Here’s what happened yesterday, Thursday, 8/16/18:
I spent a lot of time watching Janis sleep, slogging through her day in a haze of infection, temperature, antibiotics, and the cocktail of her ‘regular’ medications. About 1 pm or so she was sound asleep on her bed. I sat reading a magazine, (I think it was one of her roommate’s lifetime subscriptions from her deceased husband who was an Army officer, Military Officer’s Journal, or something like that. She never looks at them, but they keep coming.) Several times I saw Janis wake up and I would get up to kiss her. At one point I looked up and she looked strange. I went to her and found her eyes rolled up into her head, her arms shaking. I ran to the hallway and grabbed Susan (CNA) she called out to the RN and came in and saw Janis in this condition. Her doctor was on duty and came in, but by then Janis was out of that seizure. The doctor spent much time explaining to me that she believed what Janis has is not Alzheimer’s, but Lewy bodies dementia.
Later that night I was struck by this entire past two weeks and this new diagnosis. It felt like another hit. And it certainly was, for Janis. I was grateful that Janis was likely unaware of what was happening to her. Waves of remorse and guilt for not seeing it for what it was and what she must have been going through during those years. The doctor’s notes describe her as in advanced stages of dementia.

(Just some things I jotted down out of sequence, some of these quotes, spoken at different times, from Janis that I didn’t want to lose. Some go back a couple years, but I want to get this into the notes: She said, “You’re a good man.” “I love you.” “I know you didn’t want to do this.” and later, “I loved him so.” (those pesky pronouns that get screwed up with dementia.)

8/15/18 Wednesday
Late last night (Tuesday) as I was getting ready for dinner and then to bed early, the PA from Janis’s Unit called me to tell me Janis was ‘unresponsive’.
I dressed and left within 10 minutes of the call. I contacted Bo and told him, but I also told him to call his sisters and tell them not to come in until they hear from me after I get to mom’s unit and see her. Cathi and Sonia showed up shortly after I arrived. Janis had opened her eyes, she smiled, we kissed, she fell asleep again. But the nurse, (J.) was encouraged. We were waiting for the doctor’s call. Her temperature was back up to 102. The doctor had called in to prescribe antibiotics. (They had ordered a urine testing for UTI earlier.) So today, Wednesday, she is groggy, sleepy, incoherent, but her temp is down.

8/12/18 Sunday Stayed home today.
I stayed in bed this a.m. for an hour on my laptop reading articles on Alzheimer’s Disease, and dementia. It was very striking to re-read the stages of AD. I have resisted being able to accept the diagnosis for some time. Knowing full well she has dementia. (Go figure.) But gradually and with sadness, I am more able to see the stages of her dementia, and familiar memories of what I denied/ignored. It makes me feel a kind of (entry incomplete.)

8/11/18 Saturday
Janis and I went to her room. I was very weary and tired. So, was she (still very sleepy)? Her bed was still unmade (unusual, but substitute CNA’s for vacationing staff). I climbed onto her bed, (I can’t lift her) a rubber covered mattress. I left her in her wheelchair and pulled her up alongside me. I jacked the head of the bed up to a near sitting position and we held hands. We both dozed off. When I woke, she was looking at me. I smiled. She made a little smile. I mouthed for her in case she still could read lips(!?), “I stole your bed.” I doubt she understood, but she patted my hand several times. An affectionate gesture. I got up and kissed her. Later when I got up to get her lunch, she took hold of my pants by the pocket and tugged at me. I leaned down and we kissed again. Then, went to get her some drinks. I cut her nails and brushed her teeth. Went outside to the Garden. Lots of water and fluids today. A long visit. 5 hours. Janis was tired but relaxed and in a good mood most of the time.

8/8/2018 Saturday Hot and humid.
Janis is sick today. The temp was 102 when I arrived at 8 a.m. It’s about 10 a.m. now; her temp, with Tylenol and a shit load of fluids, is now down to 99.8. I texted the kids. The doctor will be in to see her this a.m. I fed her breakfast, she ate pretty well, about 75%. I kept cold washcloths on her forehead. She sleeps now as I write this.

Note: Part 3 to LOVE IN THE TIME OF CORONA~coming.