Dementia is a long series of losses and for my mother these losses come more quickly than I expected. In September, she was living in an assisted living facility and she needed help with many small day-to-day tasks and her caregivers had known her or members of her family for many years. While she couldn’t reliably tell me who had been to visit, she was still able to move about the building, go on very short outings,  and could still initiate and maintain a conversation. Some of the conversations were reports that her mother and grandmother had been to visit—harmless delusions since their visits made her happy.

Eight months later, she’s no longer able to walk or take care of her basic daily needs. She’s now living in a nursing home where none of the caregivers have a strong sense of who she was before dementia erased much of her personality along with her memory and basic physical abilities.

During the first few months of her stay in the nursing home, I would be greeted with a huge smile and some surprised chatter about my being there to visit. As her ability to hold conversation started to weaken, we spent much time visiting the facility’s kittens and talking about cats. Some visits we would spend time watching television together and she’d alternately be disturbed by some televised nonsense about aliens visiting Peru or be fascinated by the colour of old Star Trek episodes. Innocuous and sad but not yet heartbreaking.

Monday is my day for visiting.  It’s now twelve days since it became very clear that she can no longer recognize or remember me. She’s nearly non-verbal now and a genuine smile can be hard to come by so I count the moments when I can make her laugh as triumphs. And in a few weeks, this heart breaking loss will have become one of the ordinary, everyday losses that inevitable mark our way through this awful passage.

Today it was Esi Edugyan’s Half-Blood Blues. It’s gotten a lot of positive press following multiple literary awards and award nominations. Edugyan’s account of a group of African American and African German jazz musicians in Berlin and Paris in 1939 is compelling but what grabbed me and held me was the language, the beautiful turns of phrase and the shifts in tone as the narrative moves between 1939 and 1992. I’m kicking myself for returning it so quickly since I travelled too quickly over sentences like this one: “A grim little room, more like a closet of ghosts than any joint for music, the cracked heaters lisping steam, empty bottles rolling all over the warped floor.”

A rereading in conjunction with Ondaatje’s Coming Through Slaughter–a novel about Buddy Bolden, New Orleans, art, and loss–would be a fine thing.

Here’s an interview Edugyan gave the morning after she won the Giller.

Image by manavo CC licence

I know I did schoolwork today and even went to a class in the evening but it’s all a blur.

Today we took my mother to see her geriatrician. We go every six months and each time, inexorably, there are more losses to count up. Each mini-mental exam confirms what we already know.

First up: finishing reading another chunk of AACR, reviewing material by Chan and Taylor, and reviewing slides for upcoming class. The reading itself is dry but every once in a while I’ll trip over something that surprises me. Today it’s not so much the sequence of rules–which are in some ways very much like style manuals–but the ways in which exceptions are covered in some detail. For example, the way publication details are handled if a label has been stuck over the original publication details. (Go with the label and don’t peel it off to get at the original data – 1.4b5.) I’ve fiddled about creating a couple of records but it’s clear I’m a rank beginner.

Next up: finishing up readings for systems class. Three or four articles/chapters read. Much of the content is familiar or connects to previous work history. Some of the textbook strikes me as fairly basic stuff so it makes for quick skimming. I’ve hit a little roadblock in an assignment to evaluate a web app — the app isn’t outputting any content. I’ll give it another day before swapping topics.

And to round out the day, writing up minutes and working on recruitment for a student journal.

All in all a quiet, uneventful day. Tomorrow will be harder.

Photo by artolog / CC

Since I want to regain some writing fluency–writing a simple paragraph really shouldn’t feel like dragging bricks across sand–I’m going to try something a little different for a while. Most of my time these days is taken up by going to class, preparing for class, and doing assignments for class. So. I’m going to try using this space to actually capture what I’m doing day to day–what I’m actually working on. Some days it will be a laundry list of tasks, others  will be more substantive, and the kvetching that’s a standard part of library school will happen mostly offstage.

I swing between excitement and weariness but I suspect that this is the inevitable consequence of combining school with long distance caregiving. The distance is much smaller than it was when we were living in Ottawa but it still plays a role.

The small tasks that need doing get easier to do and witnessing the inevitable indignities can be managed in the moment. Simple decisions are dogged by knowing that there are bigger and harder tasks in the future. These more complex decisions will force a choice between Scylla and Charybdis.

For the moment, I’m working to regain my balance and carrying on despite all.

Lou Ruvo Center for Brain Health (source: Architect Magazine)

I tripped over a link to images of Frank Gehry’s latest building–the Lou Ruvo Center for Brain Health in Las Vegas–and had a look out of idle curiousity.

I didn’t expect to be so moved by the building–there’s something about it that expresses the confusion that comes with dementia. Shambles and beauty in one building.

Architecture Magazine has a short article about the building and a slide show. More exterior and interior images are availble on the Keep Memory Alive site.

Sometimes it’s just nicer to wander into a shop and have a look-see, so you can smell the records, hold them and touch them. (Isobel Campbell)

Some time ago, Douglas sent me a link to a Guardian article celebrating independent record stores. His eye was caught by this reference to the smell of records.

It’s the first reference to the smell of records that I’ve spotted in the wild and it surprised me. It fits quite neatly though into a pattern established by a commonplace lament about the loss of bookstores and print books.

I rarely notice the smell of books in everyday use or even when going into a used bookstore. A book with a smell is a problematic book and one I’m reluctant to take home. If it’s a used book, it’s either mildewed, damp, or been owned by a smoker. If it’s a new book, it’s off-gassing chemicals from the ink, glue, or paper.

I suspect the smell of records is actually the smell of degrading cardboard.

Credit: 96dpi

I’m at the halfway mark. The grades for the second term of my MLIS are trickling in; I’ve just about caught up on sleep; and I’ve stopped dreaming about imaginary assignments I forgot to complete.

Lots of ups and downs over the course of the year—some related to ordinary library school patterns and some related to my particular situation. Both terms have been more difficult than I expected. The difficulties haven’t emerged from the content of the program—which I enjoy for the most part—but from mundane problems of too many meetings to schedule, too much change all at once, and too little time taken to breathe.

When things feel most difficult, I slip into believing that I’ve been doing nothing. It’s a perverse habit of thought I’m trying to let go of since it magically erases the effort that went into selling our home, moving a household, reconnecting with family, learning the ways of a new city, negotiating the long term care bureaucracy, struggling with the pain of needing to arrange long term care for my mother,  looking at long term care facilities and trying to choose the right one, going back to school and relearning how to be a student, learning the outlines of a new discipline, getting good grades, publishing a paper, figuring out how student groups work, working on a student journal, winning a competitive internship, and getting past some crazy-making situations.

My hope for the summer is balance. Yes I want to learn the ins and outs of reference work and web services in a research library but I also want to spend time with my partner (he-who-has-done-ALL-the-household-work), re-start a sitting practice, explore the city more, and read for pleasure. Novels. I remember something about novels.

My grandmother, my mother, and my aunt

My plans to visit my mother every couple of weeks fell apart in October and I’m not sure how to fix that in the winter term.  She’s living in an assisted living facility sixty miles away and I travel by bus. To visit her, I leave the apartment at about 10:30 in the morning and get back at about 7. The visit itself is about two hours: longer than that is too tiring for her.

I spend a lot of time in waiting rooms trying not to think about the many ways in which she is disappearing.

The other day she was delighting in a cat calendar which she probably bought as a gift for me. She can’t really read a calendar anymore: she’s unmoored in time.

Each time she sees that cat calendar it’s fresh and new to her: she rediscovered it three or four times over the course of my visit. And each time I got to see that giggle you can see in the photograph just behind the cat.

She’s disappearing but she is still there.