“Strange days have found us
And through their strange hours
We linger alone
Bodies confused
Memories misused”
Strange Days – The Doors
Strange days have found us. It started at the end of December, when Mom had pneumonia and CHF again, and out of nowhere asked me if I was in my second year of college. Of course it threw me for a loop, so I just nodded. She then said “you must be 14.” Again, threw me for a loop, and I nodded. She asked me what I was studying and I finally got an honest answer out with “English.”
That seemed to satisfy her, but then an hour or so later, she said “I’m sorry you didn’t come live with me.” I am no good at this, so I said “me too.” Then she asked if my sons took me in. And I said “no.” She went to bed, and I realized a couple of hours later that last conversation was with her favorite aunt, who died almost 30 years ago. A little weird, but I shook it off.
She talked all night in her sleep and picked at everything around her, including me (not picking on, but picking at). Neither of us slept well. She finally crashed around 5 am, but then woke up around 8 am calling me into the living room and telling me, without fear, that something had just run across the computer and I needed to find it. I looked around, ran my hands over everything to show her nothing was there. Satisfied, she went back to sleep for an hour. When she woke up, she sat straight up, looked at the bookcase on the opposite wall, and mumbled something. She didn’t have her hearing aids on, so I spoke in her better ear and asked what she’d said. Clear as day, she asked “do you know those three angels over there?,” pointing at the bookcase. I said “I don’t think so.”
She had an on/off day, without any more hallucinations, but sleeping a lot (and I temporarily upped the melatonin, so that I could get some sleep too) that day, but then seemed to be back in present reality.
And, although physically visibly getting weaker with each passing day, with roller-coaster blood pressure – although the highs have come down some with better med spacing, but the lows, at night, have dipped very low – and continued stability and dizziness issues, Mom has stayed on a pretty even keel mentally until the middle of last week. She had part one of a crown down last Wednesday afternoon (I’ve been through a whole series of self-beatings as to whether it was my fault this past week has been full of strange days, but I’ve come to the conclusion that this is disease, and it would have happened regardless because all the signs were already there) and came home exhausted. Nothing out of the ordinary happened, so I know that and this are just coincidental. But it shook me for a couple of days.
She was tired and very weak all day Thursday, but she was lucid. She was asking questions, though, about Elaine and Rachael, and was getting them mixed up. So I sat down with her and went through some family photo albums. She had a hard time recognizing any of us, including herself and Daddy, which made me realize that lucidity has become relative.
Friday, she was still tired and still weak, but seemed to be doing a little better. Saturday, she was up all day and pretty much with the present until dinner time. We were sitting at the kitchen table eating dinner when she looked at me and asked “did you go to college over there?,” pointing into space. I knew she meant East TN State University, so I answered “no.” She then asked where I did go to school. I answered “North Carolina.”
The next question hit me out of the blue again.
Mom: “Is that where your real mother lived?”
Me: “No.”
Mom: “Is she dead?”
Me: “My biological mother is dead.”
Mom: “Did you have a daddy?”
Me: “Yes.”
Mom: “How many brothers and sisters do you have?”
Me (after counting on my fingers to make sure I got everyone): “Six…that I know of.”
Mom: “Do you have pictures?”
Me: “Yes.”
Mom: “I want to see them sometime.”
Me: “Okay.”
And then she seemed to poop out. We’ve made a habit, after we eat dinner Saturday evening, of watching basketball and she’s always hung with me pretty well. Saturday night by 7 p.m., she was done and wanted to go to bed. I put her to bed and she was out like a light all night.
She woke up between 8:30 and 9 Sunday morning and ate breakfast and was back asleep by 10:30 a.m. And slept, except for dinner, all day Sunday and all Sunday night. Monday, except to get up and go to the bathroom and eat a little, she did not get out of bed all day. I called Home Health and asked for a nurse to come out. In the meantime, Mom mostly slept and I kept a close watch, lying beside her at times, holding her hand, reminding her that I love her.
Something in my gut said I needed to let Deb and Elaine know what was going on, so I called them both. Elaine said she wouldn’t be able to get back for the funeral, but asked me if I would come to Washington so we could have a memorial service for Mom there. I said “okay,” and she broke down in tears, explaining that she didn’t expect me to agree so readily to that. I was surprised and thought “Why not? I know the cost of getting five people from the Left Coast to the East Coast on little notice is prohibitive, and they need to have the chance to say good-bye too.” Deb was calm – surprisingly – she got the Norovirus making the rounds at the retirement community where she works (the Health Department quarantined all the residents on Monday) during the first phone call, but then started stalker-calling me later in the day when it sunk in.
The home health nurse came late in the afternoon and as I was saying I thought it was time to switch to hospice, he was saying the same thing (just got a call about an hour ago for the hospice consult today). Other than a low-grade fever, her vitals were okay. He suggested giving her Tylenol for the fever (and it broke Monday night and hasn’t returned, so that eliminates the possibility of infection) and said he’d work on getting the doctor to approve the hospice consult. I was insistent that if her PA wouldn’t approve it, then to go to the doctor in the group who has also treated her, been in on hospital stays, and knows her history to get the approval this time.
Mom slept most of the night Monday night (after eating dinner, she wanted to go right back to bed), but woke up around 3 am, bolted out of bed, took off on a tear with the walker (I was right behind, but was surprised at her speed and agility), and slammed the bathroom door in my face (we’ve been leaving the downstairs bathroom door open and the light on at night so she doesn’t get scared). I opened the door and saw the fear on her face. “Is that man upstairs?,” she asked me. I said “yes, no need to worry.”
She got up yesterday morning and was fairly alert and stayed up until after lunch, when she asked me if the man was still upstairs (I told her he wasn’t), and then asked me where the twins and the little girl were. Again, even though this shouldn’t take me aback, it did, and I had no way of answering her. The afternoon degenerated into full-blown hallucinations and R.E.M. Disorder. She wanted to go to bed right after we ate dinner, but she spent the next three hours doing something with the walker (I lock it and put it beside the bed…all I heard for three hours was clicking and every time I went in, there was a crazy conversation about things like wrapping and sending a fork to someone, sending medicine somewhere, sending blood somewhere, etc.). I finally laid down beside her, thinking that would calm her down.
She talked, mostly incoherently, to people all night long, picking at everything around her, including pulling her oxygen off every time I turned around. I doubt she slept. I know I didn’t. She was up and down several times in restlessness, but then kept telling me she was going to sleep. When she got up at 8 this morning, I made the bed (I’d been up since 5 because I was hot and tired of the picking and the poking and the restlessness and knew that sleep was just not going to happen) and when I brought her back from the bathroom, she wanted to go back to bed. She dozed – maybe – for an hour or so and sat up and asked me where everyone was and what we were supposed to do. I told her everyone was at work and she and I were going to stay home and look after the house. Seemed to satisfy her, but then she asked me how many people were living here and when would everyone be home. I shrugged. I’m tired of trying to answer things I don’t know the answer to. And she was okay with that.
Strange days. Strange nights. Strange life. Nothing prepares you for being in the middle of it, no matter how much you read or hear about it happening in the course of this disease. It is never the same as actually experiencing it. Lessons abound. I hope that I learn them well.
