Last week, on Thursday, April 4th, Jerry's mother, Florence aka MIL seemed to be rallying. She was up in her wheelchair, ate a good breakfast, had therapy sessions, and was out in the dining room, eating somewhat slowly (nothing new for her ) at the noontime meal. She added an extra sugar packet to her strawberries and really poured the salt all over her food eliciting a comment from Jerry who is another salter (is it genetic?) that he had already salted it for her. She wanted no help eating, fed herself slowly as we sat and waited and watched, helped cut her food a chicken cordon bleu meal. Really everything looked delicious. She ate nearly all her boiled redskin potatoes, half her roll, a bit of chicken and all the strawberries, drank all her water and ignored her tea. She adamantly refused the apple juice proclaiming that she had read that it is not good for you. Her voice was low but she is only recently out of the woods off the Tramadol that had reacted so badly with her. What's with that but we did not question her , merely looked at each other, she is likely back to her normal self now or as normal as normal is for her. The aide who pushed her wheel chair into the dining room mentioned she was a bit peevish, he is new so we assured him "that is her normal attitude."
Friday, morning April 5 she refused to eat breakfast and was hallucinating terribly and trembling just as she had on the Tramadol causing us to wonder if someone at the SNF had screwed up and mistakenly given her another dose. I sent Jerry to ask immediately thinking I should have done so because I get an immediate sense of truth or not and the SNF staff pay more attention to me, they know me and word abounds about my prior professional background and connections. . The nurse said definitely she was off it and had not been given any, well then what is going on now? She was not the same one day later. We watched her almost violently refuse her noontime meal that they brought to her room, waving her arms, shouting almost, "I don't want to eat. I am not hungry." She was so agitated that we summoned a nurse who attributed the behavior to her oxygen level so she immediately inserted the oxygen tubes and called an aide to help get her to bed. Florence continued to ramble loudly on and on but finally we did get her somewhat calmed, whew hours later.
No sooner had we walked out into the hallway to leave than I spotted another elderly lady, Joann from the church, a friend to Florence although Florence has not remembered her for many months now. "Oh please," I whispered, "not Joann now." Joann is in her 80's, another shaky elderly, walks with a cane, has dementia and/or Alzheimer's diagnosis and is on Aricept, but still drives and still lives alone. Long story short, I question her family's lack of sense perhaps inability to face and argue with an old woman. Too late as she looked into each room along the way, spotted me and made her way down the hall. I asked if she was going to see Florence and sure enough she was. We'd closed the door partially and I explained that Florence was having a rough day and we had just gotten her settled and sleeping. "Well I will just say hello, I won't stay." "No, Joann you cannot go in now." "Oh won't she know me." "Joann I'm sorry but she is sleeping" "Well I won't wake her I will be quiet." "No Joann, I am sorry but no".We tried to help escort her back down the hall when she spotted the room of someone else she knew and stopped in. We left, because it had been an exhausting spell of hours again culminated with further exasperation.
All weekend MIL continued to decline, refusing to eat, nothing but water as the oxygen dries her out. Sunday the charge nurse wanted to send her to the hospital but we refused, what for? An ambulance ride for what? Acute, skilled care no longer working it is time for palliative. Her vitals remain good, but she is agitated and moaning. One very exceptional nurse, Kathy, who is on duty on weekends and who has 34 years SNF experience besides seeing her own father decline and pass at 92 knows her stuff and got Florence to drink some Ensure. I asked Kathy if she thought it time for hospice and she agreed, "why fight this?" She noted and said they could request that Monday along with sub lingual morphine, because Tylenol was doing naught although MIL maintained she had no pain. It was a long weekend and Florence remained in bed, moaning and jabbering. By Monday they no longer got her up and dressed but she was more delirious. Yes they had contacted hospice but cautioned this means she will be back on non covered room and board, private pay, but we are thinking so what, use up what remains of her $$. And I well know Medicare would have dropped their few days payment anytime now because she was not progressing in therapy or ADL (activities of daily living). She has been private pay anyway, what's new? Monday the SNF got orders for Atavan and I was most skeptical of giving her that, I have seen it counter act badly in frail elderly, worst example the mother of a friend in PA. I cautioned the SNF nurse about it reminding her that Florence had reacted badly to the Tramadol but she said it was less than a half dosage. I said we would stay to watch any effect, and luckily we did. Within 15 minutes she was worse, more agitated, babbling constantly, incoherent, and then thrashing about in bed. I went immediately to the nurse and said "come see this." To which she said, "well give it time..." NO 20 minutes more that's all. I was able to calm MIL a bit with cold wash cloths to her forehead which caused her to relax and close her eyes. After an hour I again grabbed the nurse who was waiting for the orders on morphine. "Waiting? Well who must I call?" Within 5 minutes we had a dose sub-lingual and although the jabbering continued, the thrashing stopped. Her most common phrase repeated, "I don't know," but sometimes the comical "Bingo, bingo" followed with a low chuckle. She had complained that her back hurt so Marissa, a young concerned aide, called another to help change her position. That evening I returned to be sure all was being done right and just in time to observe the night nurse give her evening morphine. I verified that no Atavan was ordered.
Tuesday, yesterday, she was babbling less, but still some and recognized us. We met with the hospice team and I felt like the weight of the world lifted from my shoulders. Today Wednesday, April 10 she is bed bound but calm. The hospice chaplain was with her as we came in, he said he had used her hymn book, one I'd given her to use when she played the organ at the SNF in the back room, and that she had opened her eyes for some choruses. I told him she knew those hymns by heart. Sure enough he and I sang "it is well with my soul' and she opened her eyes. We think she is off somewhere. Little recognition, some coughing but when we tried to swab her mouth, she is no longer drinking water, she screeched. No one knows how long this will continue. This is her 6th day without food and second sans water. Such a slow, miserable way to die. I am thankful my family went happily, peacefully and some without warning. The weather turned wintry mix thunder, lightning and hail last night. Surely the heavens are not pleased either.
