Thursday, December 29, 2011. Emma began talking a blue streak last night, Wednesday, around two in the morning. I got out of bed and went downstairs to the living room where she sleeps to see what was going on. She was half sitting up in bed. “Get me out of here,” she said. “I’m trying, but I can’t get out of here,” she went on, as she gripped the side rail of her hospital bed. “I’ll be here all night,” she said then. So she was aware it was night. She hasn’t seemed to notice differences between day and night since she settled onto her docile plateau in July.
I felt sorry for her, being trapped there. I can relate. Would I want to be trapped in a hospital bed? No. I was trapped in a hospital bed in the hospital for five days when I was 3 for a cyst and hernia operation. I had been given a really neat diesel train set which I had brought with me. I wanted my trains in bed with me, and the nurses didn’t know what I was saying. What I said was perfectly clear to me. “Does she want a drink?” they asked each other. I was so frustrated, and I see Emma reacting that way: “Get me out of here.” (Likely, “Get me out of this life.”)
My aunt, Emma’s sister-in-law, who will be 98 on New Year’s Eve and is in a nursing facility an hour from our home, is cognizant but confined to a wheelchair unable to walk without falling, says essentially the same thing – “When I get out of here: When I came in here I gave my cat Maggie to the vet because I knew there she would get good care. When I get out, I’ll get her back and take her home.” She told me this over the phone Christmas day.
“Oh,” I said. When Emma, Jetta (our teacup poodle) and I would visit my aunt in her home, Maggie, a big orange tabby, would lie in wait for me in the dark hallway just outside the bathroom door. When I’d emerge, she’d spring and pummel me: “How dare you bring that dog into my house.” Maggie chased Jetta around and around an easy chair until Jetta was chasing Maggie. It’s a wonder they didn’t melt into a pool of butter. (–“Little Black Sambo,” one of many stories Emma read to me when I was a child.) Maggie got old and infirm and my aunt had her put to sleep before she entered the nursing facility.
The day after Christmas, Monday, Emma’s blood pressure began to fluctuate, from dangerously low in the afternoon to above her normal rate that evening. She refused to open her mouth when our aide tried to feed her dinner (the aide feeds her dinner in bed from a tray table). That’s when I called our Hospice agency. Of course it was after hours, and a holiday, anyway, for many people. I got the answering service who notified the on-call nurse. When the nurse phoned me and I told her what was occurring, she said, “She’s had a decline.” Wow. A decline. I never would have known, in these seven years since Emma’s dementia was diagnosed.
“I’m going to end this call and call back and speak with your superior,” I told the nurse. I did that and got almost the same response. Clearly, no on-call employee wanted to be interrupted from the end of their holiday by phone or to visit. And the superior talked over me, so she didn’t hear me when I said I wanted the nurse to come out and check Emma’s blood pressure. “I don’t want to play doctor here,” I said. I don’t know whether to administer her blood pressure medication or not, in case her blood pressure is too low.” By the time the superior got around to hearing me say that I wanted a nurse here – this process took five phone calls – I had given Emma her blood pressure medication; I recalled that Emma’s regular nurse, Tess, had told me that this medication regulates her system as well as balances her blood pressure. It was good I did give it to her because when the nurse got to our house and checked the pressure, it was elevated, not dangerously so, but the fluctuation is a concern. Ultimately, Tuesday morning and evening we were able to get Emma to eat.
Wednesday afternoon our Hospice chaplain came and she explained the way the declines work: in this final stage of dementia, especially, the patient will experience a downturn, then come up a little, but not as high as before, level off briefly, then down again, and the downslopes become steeper. The chaplain’s enlightening words and guidance supported and comforted me.
Wednesday night, when Emma began talking full sentences and became agitated, I didn’t sleep. I stayed with her most of the time. When I left the room she called for me and then called for my brother, “Bob! Where’s Bob?” Bob lives eight hours from here. I hesitated for hours, not calling for a nurse. I didn’t want to deal with someone who was going to argue with me and blow it off as simply a decline. Of course it’s a decline; but what do I do? I’m not the doctor here. Ultimately I realized that I needed to stop being stubborn and just call. A very compassionate nurse came out, took care of Emma, checked her blood pressure – up, but within a normal range for most patients.
This morning, Thursday, our regular Hospice aide came, then, later, our regular, team Hospice nurse, Tess, came. Tess requested Hospice put us on “continuous care,” meaning that I will have someone here 24 hours; that is, strangers creeping around in my house, coming and going during the changing of the guard, in the middle of the night. But that is better than my having to get up and find Emma thinking she can creep around and then falling. She had gotten her legs through the rails on the bed sidebars a couple of times and she came very close to figuring out how to lower the rail, this the woman who has been weak and mostly unresponsive for five months.
Tess stayed with us for two and a half hours until the continuous care person arrived. Emma is still talking, and when she is not trying to sit up, staring and reaching for some phantom above and in front of her. We don’t know what she sees. Emma’s doctor prescribed Atavan, a medication to calm her, to be taken as needed. As I write this tonight, she is still talking, but the continuous care nurse is sitting by her side, holding her hand, and that settles Emma.
She’s back in the sense that she is forming complete sentences – “I forgot to tell Marie why I was late coming back from lunch. I didn’t get back until three” – yet she is unable to recall the subject moment of which she speaks. She has experienced these “she’s back” events before and each time they indicate a downturn from which she will not recover.
Friday, December 30. Emma’s agitation grew wilder during last night. The night nurse reported that she was lying on her bed with her feet up on the wall and would not settle down. The cause may be due partly to the nurse’s not being able to add four hours to the hour Emma took her first Ativan to arrive at the next prescribed hour to take the medication. Her sum amounted to five hours rather than four, so she gave Emma the second dose an hour after she should have.
Finally, around 2 a.m., Emma apparently wore herself out – I was not nearly so active, merely missing a night’s sleep, yet I was exhausted – and fell asleep. Now, at 9:30 p.m., Emma still sleeps. We tried to wake her to give her medication and to feed her, at least to administer liquids, but she just pushed everything away and turned her head.
Madam Queen, the night nurse, arrived at 7:30 this evening and refused to listen to where things are and to my instructions. She told me she knew it all even though she had arrived in the middle of the night last night, was gone early in the morning and I had not met her. Rather, she ensconced herself in a chair in the living room and when I didn’t place her crown upon her head, turned her back to me, truncating our audience. She uses the microwave while the dishwasher is running, liable to throw a breaker switch in this old house even though I asked her to wait. Wait till I instruct her to go down into the cellar in the dark and find which breaker switch has been thrown in which breaker box. Wait till she gets a bill to pay the mortgage, since she thinks she owns the place.
Emma and I are, otherwise, so very fortunate to have such a compassionate team of Hospice supporters – Tess, our nurse; Geri, our social worker/bereavement counselor; our chaplain; and our music therapist – all who extend themselves to listen and to help us, constantly here for us. Emma has no idea, I believe, how fortunate she is. I do; and to these and to my consistently concerned and supportive friends, I am humbly grateful.
–Samantha Mozart, December 29-30, 2011