At Work Upstairs

I’ve been preoccupied with school these last months: going back to school after a long absence is hard work. Doable and satisfying but hard work.

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.

Vernon Fisher
Originally uploaded by heyther

One of the blogs I make sure I check every morning is Elizabeth's. I check because I want to read what she has to say and I check because I want to make sure she's still alive.

I started reading it because I liked her novel Zed. I've stuck around because her voice is compelling (though usually NSFW) and she makes me think about what it means for an athlete to move from figuring out how to make it onto the Olympic fencing team without a sponser to figuring out how to live, really live, in a wheelchair with a progressive, terminal, rare, and poorly understood medical condition. 

If you read Elizabeth's stuff you'll learn a lot about goth lolly culture and anime, wheelchair sports (sadly not as egalitarian as you'd expect), despair and cutting, the underbelly of the Canadian health care system, the limitations of home care agencies, disablism, memory loss, rage, and most important, determination.  (If you ask, she'll send you a labour of love and hope: a postcard that takes much effort to put together.)

What's that got to do with the photograph? The man in the wicker wheelchair: that's my great uncle Vernon.  He died the year before I was born. And since my family loves secrets, it was many many years before I learned that he had probably died of ALS and more years before this snapshot came my way. 

When I first got the photograph what I saw was the chair. Now what I see is Vernon: smiling, open, and as mischievous as he was in boyhood photographs. And in an odd, round about way, that is Elizabeth's gift to Vernon: I see him.

Heather

Week one of vacation has passed in a blur of traveling, visiting, clearing, chatting, and waiting. Not a particularly restful time but needful things were done.

I meant to take pictures but didn’t manage to drag out the camera in time to grab shots of the happy new nephew or the dancing niece or relatives or my old home town.

I spent most of the week clearing out my mother’s house, getting it ready for sale. She moved into an apartment with a better support system in November but the house was still full. It’s a small, post-WW II house, about 1200 square feet with a full attic and a full basement.

Exactly how full? Well, we filled a 12-foot dumpster and the house still wasn’t empty when I left. Somewhere over the last 4 or 5 years, frugality turned into hoarding. And hoarding coupled with memory problems meant that every nook and cranny was stuffed.

Some of it was easy to deal with: twenty years of nearly empty paint cans, broken and ancient appliances, empty cardboard boxes, empty bottles, packages and bottles of stale food, years and years of paid bills and receipts.

Some of it was odd: cracker boxes stuffed randomly amid the linen, caches of sanitary napkins, kitchen objects wrapped in tinfoil.

Some of it was smelly: cheese left on top the fridge, butter left on the the counter, and used kitty litter bagged up in a corner.

Much of it was sad: Bag after bag of fabric and sewing supplies, piles of craft supplies and projects for herself and her grandchildren, hundreds of reference photographs for her paintings. Each object represented a plan, a hope, a possibility. All that hope is gone now and that’s the hardest part. Not the sorting out of family heirlooms and memories but the discarding of projects she’ll never be able to finish.

She still thinks of herself as a person who can paint and sew and still has plans to make more art, more clothing, a new home. But the dementia has taken away much of her visual understanding and her understanding of spatial relationships. She’s only partially aware of this and so her plans go on even though she can’t thread a needle, draw shapes, follow a pattern, or easily manipulate tools like TV remotes or coffee makers.

She was a fiercely independent person and doesn’t and can’t understand why she is thwarted by the objects around her. She’s much diminished. Her bouts of sadness and frustration come and go with her attention span. We hope for a long plateau before the next inevitable set of declines and the next move away from independence.

Heather

We’re storm stayed. Stuck, absolutely stuck inside. Well, sort of. We do have snowshoes but a soft chair and a little nippy sweetie (aka Bailey’s) is far more interesting than figuring out where we’re going to put all the snow once it stops blowing around. While the sight of a neighbour skiing down the street makes me happy, the sight of another one using a broom as a pretend golf club is worrying. Cabin fever has struck early and, obviously, he needs another nippy sweetie.

I’ve been holding up the nothing side of this blog very handily don’t you think? I could, I suppose, deploy a random list to fill up the nothingness, a shaggy list of things semi-accomplished. I’m too chicken to actually check how long it’s been. Okay. I checked. Two and a half months.

In late September my mother had a health crisis that’s rendered me silent. For the last two and a half months I’ve written nothing and read very little. I’ve spent lots of time on the phone with her, with family members, with doctors and nurses. I’ve travelled hundreds of miles there and back by train and somehow over the course of the journey stopped reading, stopped writing.

My mother is going through one of the most difficult transitions in her life, a transition that she doesn’t fully understand, can’t fully understand. The loss of her short-term memory has taken away her art at the time when she needs it most. Her failing memory and a sudden plunge into dementia has taken away her home, her car, and her independence.

As she settles into a new apartment and mourns the loss of her self, we’re moving toward a new normal. There’s great sadness here and little hope for improvement. I hope for slow progression, kind nursing care, and peace amid the losses that accumulate.

Heather

Gordon, Carol, Donald, the chicken, Barbara

Donald looks very pleased with himself.  The chicken looks calm.  My mother and aunt look solicitous, most likely of the boy since they didn’t like the chickens.

The man taking the picture, I’ve recently learned from my mother, was probably laughing.  Vernon, it turns out, was a bit of a joker.

Over the last couple of years several of our relatives have undone our trick of moving a thousand miles west to create psychological space in the family. Somehow half the family has followed us and we now live shortish train rides away from them. And when kids were added to the mix our refusal to travel in December eroded. We still avoid scrambling to be with the extended family on the twenty-fifth but we do First Christmas a week or two before to please the children and the parents. The trip was pleasant enough; the gifts made people happy all round; and the food was excellent.

The kids giggled themselves silly. We suspect that one secretly thinks her father is Santa and not just her Santa but everyone’s Santa. The other is still very worried about the definition of “good” but is very clear that Santa only brings toys and never brings socks or underwear.

We’ve passed the milestone of First Christmas. And now we’re into the slightly less mad rush to fill the house up with good food and drink, clean away the year’s accumulated grunge, and enjoy the passage of time in each other’s company. An entirely secular and private time.

My mother and aunt a couple of months before my cousin and I were born. I’m now nearly twice as old as my mother was in this photo. Years will pass before she looks like she’s more than 13 or 14 years old.

I have one relative who will call every 20 or 30 minutes until she works up the nerve to leave a message on the answering machine. Now I have two. And an unplugged phone–the rotary phone doesn’t have a ringer but is heavy enough that I’ll be able to thwart a burgler with it if need be.

I have a recurring habit of buying fragments of other people’s family history. There’s something very melancholy about finding discarded photos in antique or junk shops. Whole lives heaped in random jumble. On Saturday, I found bits and pieces of a photograph of a family at a beach. The partial captions place the family in 1924 in Ferndale.

These three women are probably sisters or cousins–they appear in other family groupings on the tattered pages.

The photographs I buy are always are in bad shape—browned, faded, dog-eared but I find them very compelling. Not just for the women in the foreground. The tiny things going on in the background: the sisters’ feet; a girl hugging an older woman; a boy waving.

This postcard from 1907 (via ImagesCanada) shows a bit a land not five minutes walk from where I learned to swim some 60 years later. Trees and buldlings have encroached of course but it’s still easily recognizable. And still a place part of me thinks of as home.

What the postcard doesn’t show is the small harbour five minutes walk in the other direction.

This 1905 photo (via ImagesCanada) must have been taken from the edge of the quarry where my great-grandfather was paymaster and my grandfather would load stone into small rail cars for 14 cents an hour.