Update as the Year Winds Down

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There are days when her affect is flat and withdrawn, when she keeps her eyes closed during my visit and barely responds, or days when her gaze wanders away from me and toward anything that moves (the images on a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.


About Melissa Crandall

Longer ago than I care to admit--although I will--I cut my writing teeth on fanzines and media tie-in novels. Since then, I've moved on to narrative nonfiction, speculative fiction, and essays. I write to explore and understand the world around me, the things I see and experience nearby or from a distance. If I shake myself up, cool. If I shake you up, even better. Not gratuitously--what's the point in that?--but to set what I know, or think I know, on end and realize, "Well, doesn't it look different from this side!" My work is neither sexually explicit nor graphically violent. Let's face it - your imaginations will come up with things far worse than anything I could write, no matter how descriptive. Besides, it's just not my thing. I live in Connecticut with my supportive husband Ed, a cat named Ruby who might just think she's a dog, and an epileptic Australian shepherd named Holly who isn't quite certain anymore who she is, except she knows she loves her mommy.
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4 Responses to Update as the Year Winds Down

  1. Barbara Davis-Dickman says:

    The subject is so difficult, but your words are beautiful. I know it’s not necessarily your intent, but they help me deal with the loss of my own mom. Thanks Melissa…..have a peaceful holiday and know that I am thinking of you.

    • Barbara, apologies for not responding sooner to this. I’m just getting back onto the computer after what was probably a “way too long” hiatus. I’m glad for whatever help my words can bring to someone. It’s just so nice to know none of us is alone in any of our human experience.

  2. frangipani says:

    Thank you for sharing your journey. My mom is declining too, but has not reached the state your Mom has. Nonetheless, we grapple with having to adapt to the new realities as they present.
    Wishing you both well this holiday season.

    • Apologies for taking so long to respond. As you say, we adapt as new realities present themselves. Every now and then I think longing of being able to play ostrich, stick my head in the ground, and just pretend none of this is going on….but there have been so many golden times I’d have HATED to miss. So there you go – a two-edged sword. Peace to you and yours.

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