Mom’s response to the world around her continues to be something of a rollercoaster ride. There are days when she is quietly content, even (in her own words) “happy.” Sometimes I find her deep in conversation with one of the other patients in her unit. One of the ladies – Dottie – told me that she and Mom “look out for each other.”
There are days when she is furious, beyond angry and into the red zone because of the unfunny jokes her brain plays on her, the delusions and misperceptions that present as reality to her. No point in giving you details on those days; it would only make you sad.
There are days when her affect is flat and withdrawn, when she keeps her eyes closed during my visit and barely responds, or days when her gaze wanders away from me and toward anything that moves (the images on a TV screen, for instance).
On angry days, the words tumble from her lips. On happier days, she converses mostly when prompted by questions.
Her conversations usually center on a single topic and she will talk about an instance in her perceived time over and over again in the course of a visit. For her, all time is now. Rather than perceiving her life on a horizontal scale, her life is now tipped on end and stands vertically. Most of these conversations bear no resemblance to reality as we know it.
It’s difficult to say what she remembers and what she doesn’t because her brain betrays her and will not allow her find words, or it hands her the wrong word and that’s the one she uses because nothing else comes to mind, or it hands her a totally fabricated memory. There are those who find this sort of “mistake” amusing. Trust me; it’s not. Ed made the perfect analogy to this condition – it’s as if her memories and words have two sides, one of Teflon and one of Velcro. Depending upon which side brushes against her brain, the memory or word either slips away or sticks. Just because she calls you by the wrong name doesn’t necessarily mean she’s forgotten you (although maybe she has). It may mean that the name she’s using is the first one that came to mind.
If she’s unable to remember you or acknowledge you (and she’s good at faking it, believe me), it doesn’t mean she doesn’t love you. She can’t help what’s happening to her. This is her disease, not her. She is not the sum total of her disease. Somewhere in there, Virginia still exists. It’s only that she’s sometimes (often) hard to find.
I had a long conversation with the head nurse yesterday. She had stopped me to ask my permission to request an additional anxiety drug for Mom to help keep her calm. (Of course I said yes.) She mentioned that the anxiety drugs also aid in helping with respiration as end of life approaches, which made me ask the following: Knowing that there are no rock-solid predictions, what was her gut feeling about Mom’s progression toward death?
Mom is losing weight at a slow and steady pace. (She is now down around 100 pounds.) There are many days when she refuses food, refuses her meds. (I try to help her take her meds because I want her to be pain free. For those of you concerned about such things, none of these meds are “keeping her alive,” they are just keeping her comfortable.) Her confusion is increasing as is muscle weakness. She’s now a fall-risk and they monitor her closely.
The nurse told me that she thought death was “not imminent,” but felt that we are now talking months rather than years. Eventually, Mom will stop eating altogether. At that point, the progression to death could take something from days to as long as a couple of weeks.
So there we are.