Useless Information
This is purely anecdotal evidence as opposed to rigorous scientific evidence based on studies. There can be no studies - this involves one person and one night. I give the evidence based on several factors - having known my mother for 54 years; being a daughter; being a mother; being there earlier that night - and extrapolating from those facts.
On the evening of 22 June I walked into my mother's room at the extended care facility. The room was darkened. "Jane" (not her real name), my mother's pastor's wife, was sitting by my mother's bedside in the only chair, the wheel chair, holding my mother's hand and talking with her. I went around to the other side, the one with more space, and leaned over to let my mom know I was there. She did not look at me. Per Jane, she did not turn her head to her right now. That's why Jane was wedged between the bed and the wall. My mother was mildly agitated. We continued with Jane in the chair and me on the other side of the bed for a while, then Jane gave me the chair and went to the other side of the bed.
My mother was still agitated. She appeared to be trying to tell me something. She moved her jaw a little but her lips would not move and nor did her tongue. She grasped at my hand and then flung it away. After a while Jane left and went to sit in the lobby of the facility, leaving me alone with my mother.
She continued to try and tell me something. No consonants - you need oral contact to make consonants and she wasn't moving her lips or tongue. In fact, her teeth were out and her lower lip was laying back across her gums and onto her tongue. She had some success with vowel sounds but you really need the consonants to tell what's being said. She did well with "aiiiiin" (pr. like the German 'ein' only more drawn out), which I interpreted to be "I" or "I'm." Because of her reaction - she calmed momentarily - I believe I was right. The next two sounds of the three sylable communication were similar - "aiiiiiin aiiiii iiiiiii." This set of three sounds was repeated a few times. I tried to fit in something cliche but probable based on the situation, "I love you," but the vowelation did not fit.
The more I missed the translation the more agitated she became. I recalled a conversation I'd had three or four days before with the evening nurse in which the nurse said my mother got agitated quite often when she had company. I told her that I thought I agitated her more than anyone. This worried me since she had, since coming to the facility, worked herself up so she had to go to the emergency room once and had, on several occasions, gotten so upset she had to have oxygen or some anti-anxiety meds.
When I didn't get what she was trying to say she would shake her head violently, "ooo-hoo-hoo" ("boo-hoo-hoo" sans consonants), then, toward the end of the half hour, crane her neck and clear her throat loudly as if the only problem was that she wasn't speaking loud enough. She moved so much that she slipped into what had to be an uncomfortable position. I left my bag on her bed and went to ask the nurse if she could send someone down to adjust her.
I would have, and I tried, but I was afraid she would fall apart in my hands she was that frail. Another thing I noticed was that her nose was that yellowish-white color that you see if you press on your skin when you're retaining water. The nurse said they would come down in a few minutes when they got ready to go around. I checked for Jane but didn't see her. Found out later she was hidden by the large shade of a lamp. I went back to the room.
She was still agitated. I talked to her, told her we were taking care of things. I told her I knew - she looked at me skeptically then went back to the voweling, ooo-hoo-hoo-ing and throat-clearing. I wanted to tell her to stop because she was fading and only making it worse; I wanted to tell her she was going to die but what if she only wanted to tell me someone was stealing her mail, her identity, her Bible notes the way she'd been going on for the past month and some? I didn't want to agitate her worse and one of the aides had told me that when one of her church friends advised her to just let go and go to be with the Lord she just got agitated. She was agitated enough. Never mind adding to it.
She finally fell into a fitful half-sleep. I snagged my bag and snuck out. There were no nurses or aides at the nursing station. They were on their rounds. I walked past the empty desk. That's when I came around that lamp and saw Jane watching TV. I told her my mom was sleeping, said she might want to peek in on her but not to let her see her or she'd be there all night. Jane said she would come the next morning to sit with my mother after she made breakfast for her family; I said I would come the next afternoon when the husband got home - a dying woman's room is no place for an antsy Autistic young man like my third-born. Jane said she would go peek in on my mother. I warned her again not to be seen and left. When I got home I told the husband we were now officially on the Death Watch.
That is all I saw myself. The rest is what Jane told me.
Jane heard my mother's monumental throat clearing before she got to the room. She peeked in and my mother gestured to her. The nurse or one of the aides, I'm not clear which, came up behind Jane and told her that my mother was dying, she didn't want to die alone, she wanted Jane to sit with her.
Jane did. When we compared notes I told her how agitated my mother had been when she was trying to tell me something. She said my mother was the same for her but she (ignored it / persevered / some other turn of phrase meaning she sat through it until it ended). From ten o'clock when I left to two in the morning my mother apparently fought with Jane, pushing and pulling at her, clearing her throat. At two my mother was medicated again and she slept until around four when Jane noticed she was getting warm. That white area around her nose had spread to her cheeks.
Back to my recollections.
My youngest came in from work around one a.m. I sat up a little longer because the bedroom is so far away that time of night. I finally got to bed around two-ish.
At ten past four the facility called me and told me my mother's temperature was 104 point something and her heart rate was 160+. I barely remember the call since I had been getting very little sleep for the last few nights. They called back just before four thirty to say she had passed away. They also told me that their rules called for removal of the body within four hours. I had to get up and find a mortician. I texted Jane to let her know she didn't need to come sit with my mother that morning. In reply I received the worst text message I ever have had - "I know i am with her"
Rant: Why? I wondered why they had called for her to come and not called for me to come. The husband said that fever call was a hint to come down. I said they'd certainly mention if they thought I should be there. He said he knew, that's why he asked me if he should take the day off work.
He asked me that? When?
Turns out Jane stayed the night with my mother, ignoring her agitation, holding her hand until the last when she woke, squeezed Jane's hand a couple of times, took two breaths, and died.
Analysis:
Information is no good to anybody unless it is amassed and put together in a meaningful way. That night, Jane was the only person on earth in possession of two vital pieces of information:
1) I was planning on coming the next afternoon to sit with my mother.
2) My mother wouldn't last until the next afternoon.
Jane, a mother and a daughter, a pastor's wife, a human, did not put those two pieces of information together to form the idea that perhaps I might want to be called back. When she was being informed that my mother was dying and didn't want to be alone I was probably still in the parking lot since I move slow. Even if I was on the road by then the car has good steering. It's brand-new. It senses things behind it and shows me how close I am to things when I back up. It turns well. I could have turned around. And even if I had reached home by the time Jane put these things together the car can be turned on again and driven over. There is no upper limit to the amount of times the car can be driven in a day.
During those four hours between ten and two my mother displayed what I recognize to be frustration in her attempts to communicate. Back when she could talk as well as, and often more than, other people, if someone didn't get what she was trying to say she would ratchet up the pitch of her voice and she would sometimes even do that "boo-hoo-hoo-ing." As she got older and her voice grew softer she would also clear her throat as if she was about to give a speech. I have known my mother for 54 years. I don't think she would change such fundamental behaviors just because she's dying.
Jane also did not put those two pieces of information together with what would naturally follow for a mother in such a circumstance or with what a daughter might want in that situation. The stereotypical obituary mentions the deceased passing "surrounded by (optional - "loving") friends and family." This is what people expect and, for most, this is what they want. Not everyone is this way. My mother-in-law left orders that she was not to be visited in the last week of her life. For many others, though, being with loved ones seems to matter. The nurse or aide, who has experience with the dying, said this is what my mother wanted - not to be alone.
It looks like I'm laying all the blame with Jane here. I'm kind-of ignoring my part - I shouldn't have left. I should have gone back. I should have at least called the facility to see how she was. I should have called Jane. I can tell myself all of that and I do. That's personal. Moving along...
I've told Jane a few times (five by my count but I haven't kept records) that she should have called. I think the difference between southern-speak and western-speak is setting us at odds here, even into different conversations. I say it, she says that's all right, like she'd taken the burden off of me, did me a favor. Sort-of like she's hearing a variation on, "Oh, you picked up my trash can when it blew over? Why, you didn't have to, I was home, you should have called" when what I'm saying is more like, "You just ran a red light - you should have stopped."
Now, Jane is a sweet person, not a mean bone in her body, I don't think a mean thought could figure out how to grow in her brain. She did her duty as she saw fit at the time, did her duty as a pastor's wife and (tried to) comfort(ed) the dying, spoke soothing words of hope of a better "beyond." I can't fault her for not thinking of it too much, it was late, she was tired too, it never occurred to her between the hand-holding and word-speaking. I've never seen anyone just hours before death in my life. I had no context to fit things into. Jane has been with the dying before but even she expected to sit with my mother the next day.
In my meanest moments I imagine her being forestalled from going to her mother's bedside and being denied her sons' presence at her own. That's plain mean of me and it won't turn back the clock. I'm going to mention it to her - hopefully I won't break down or get that mean streak going. I keep thinking, if she'd had this pointed out to her last year or last decade, she might have remembered and called me. If I mention it she may be more aware the next time this comes up.
But she was the only one with the two pieces of information necessary to have gotten me back there. She obtained them within ten minutes of each other by my best reckoning. The information did no good because it was not consolidated and assimilated with other information such as the human need to be surrounded by friendly faces at death and the desire of the survivors to be there. Information in and of itself is useless unless some intelligence puts it together. Without putting the information together to make a larger picture, information is useless.