Tuesday, July 01, 2014

Dementia brings back the monsters under the bed?

I've been reading Love and Forgetting: A husband and wife's journey through dementia by Julie Macfie Sobol & Ken Sobol, which tell the story of Ken Sobol's dementia (Lewy Body Disease) both in the first person and from his wife's (Julie's) perspective.

The following passage is a first-person description of the hallucinations he'd have.  As usual, any typos are my own:
Moving day was October 1, 2007. When I got up the first night at the new place to use the washroom, I was startled to find that the stacks of boxes, floor lamps and other scattered leftover from the move were providing material for new kinds of bizarre shapes. The forms were back again the next night. In fact, it got to so that virtually every evening I would find waiting for me outside the bedroom door a troupe of odd, inexplicable creatures doing their best to shake my grip on reality.

These were not like the alarming nighttime apparitions I'd seen in the hospital after the TURP procedure. the new ones came in two basic guises: animals of various sorts - mostly small, skittering creatures - and tall, thin types. Sometimes they ignored me. Sometimes, but only if I turned toward them and started, they became animated. Then, for example, the low rectangular radiator in the hallway might suddenly convert itself into a small sheep; a cluster of scarves on the coat hook might become a high fashion hat; an Inuit print could spring to live as a circle of wolves following me with their eyes. (A litho resembling such a wolf scene hangs on the wall of our home office.) Some of the more feminine figures, if that is the proper designation for them, carried what appeared to be small creatures in their arms.

At first, I freaked. No surprise there.But then I noticed that whenever I approached them, they would immediately rise and move off in a slow motion down the hallway, or simply disintegrate on the spot, before reforming into normal lamps, jackets and whatever other objects in the darkness had led me to imagine their existence.

On the nights that followed, some of the forms even entered our bedroom and then at times, I had to waken Julie to make sure they went away. (Not that she eve saw them, of course, but her voice was reassuring to me and commanding to the apparitions.) Ultimately, it seemed clear to me they meant no harm nor presented any real danger. All the same, when I later came across a reference book that called them "benign visions," I was relieved.

I rarely got a glimpse of the hall dwellers' faces; I wasn't even sure they had any. They never spoke, and except for one accidental instance, they always managed to fade away before I made physical contact. The incident where I touched one took place as I came out of the bathroom one evening and tripped on something (a shoe, I think,), losing my balance. As I thrust out my arm toward the wall to catch myself, so did a vaguely alpaca-like creature. We met and touched at a corner - Julie's terrycloth bathrobe and my shaggy Irish wool sweater hanging on the coat rack. The creature and I both sprang back in alarm. When I looked again it had disappeared, fading into the woodwork.

I didn't know what to make of this tactile experience; I still don't. But as time passed, I grew so accustomed to the apparitions that I began looking forward, albeit in a slightly uneasy way, to seeing what form they would take each night.

Then there were those other apparitions, the ones that could come at any time and that manifested themselves not as things I see, but as things watching me. They lurked just outside the corner of my eye; if I glanced their way, they also would run away, as if they didn't like being seen. (Of course, maybe they were just getting old and cranky, like the rest of us when we reach a certain age.) A few times I found myself addressing one of them, momentarily forgetting that I was asking for an opinion from a pile of clothing or perhaps quarreling with something as vague as a wisp or memory.
What struck me about this passage is the extent to which his apparitions resembled the monsters that haunted me when I was a very small child.

My monsters very rarely moved around, instead preferring to stand around menacingly.  I was never brave enough to engage with them so I don't know what would have happened. But his description of how everyday objects would turn into apparitions really reminds me of my childhood monsters.

In the past few years, with my grandmothers declining and various people around me having babies, I've been thinking that old age in some ways resembles a reversion to early childhood.  But it never occurred to me that that could apply to cognitive processes as well.

4 comments:

laura k said...

An amazing quote. I never would have known that.

People with dementia sometimes (often?) revert to their first language, even if they've been speaking their second language almost all their lives. Would that be a similar cognitive regression?

impudent strumpet said...

I'm trying to figure out if that's cognitive or if that's loss of acquired skills. Maybe it depends on the level of fluency and the point in their life where they acquired the language?

laura k said...

I'm assuming if you lose acquired skills, that loss is caused by cognitive changes. No?

impudent strumpet said...

By "cognitive", I'm thinking of understanding and interpreting the world. But this is just me observing things and making theories about them, not the result of reading or research or anything.