Snow storm

Hokkaido disappeared in a snow storm this week.
Typhoon speed winds, snow, rain, snow again.....days of it.
Flights and trains cancelled and roads all over a white out.
Luckily I didn't have to go very far to anywhere: the 9th floor of my Japanese teacher's apartment was shaking and the supermarkets were deserted.
Quite a week of Back to Work really.

Okaasan, of course, was stuck at home.
The day service helper came on Wednesday at the height of the storm, but couldn't/didn't take Okaasan out - just stayed an hour and chatted.
But it meant that Okaasan hadn't got out of the house for 7 days....since I'd taken her to the shrine.
So, on Thursday Dear Son and I both got home from work about 6 pm, fed the cats, and turned right round and went out again with Okaasan in the car to a local big shopping mall.
Walked all over the supermarket and shops, and had dinner at a ramen place on the way home.
Exhausting, but necessary.

DS was home quite a bit recently. "Home" as in into the house around 6 pm, and out again at 6 am. Going to bed by 9 pm, so "home" for 3 hours a day, minus the long time he can spend in the toilet looking at his iphone, in the shower and packing ski stuff into and out of the car. Actual "home and talking time" is probably about one hour. But he was around.

Okaasan was ok. Sort of. Watched Tv and slept her way thru the week. Occasional looked through the bags she has on the carpet around her. Stuffed them with rolled up newspaper. Took the stuffing out. Put it back in again. Giving her some of the bags and removing the rest from sight was a good idea.
But even Okaasan kind of felt she hadn't been out for ages and had cabin fever a-growing. So the shopping mall was a relief.

Hey!
Big news! I shared this with close Facebook friends now, and I think you blog readers are pretty close too - so here's sharing with you:

I'm going to organise a film screening, plus director Q and A session in Sapporo in May this year!
The film is 毎日がアルツハイマー/Everyday is Alzheimer’ｓ

This is a Japanese documentary by director Yuka Sekiguchi. EIA1 was released a few years ago - and shows the everyday life of Sekiguchi-san's mother Hiroko. EIA2 was made last year, and is about the director's trip to the UK to talk to care givers and managers about Alzheimer's.
If you look on YouTube, you'll find many excerpts from the films. Some with English subtitles.
EIA1 was shown in Sapporo a few years ago at a small theater for a week. I went and was so moved. All around me in the theater darkness were other people being moved too. You could FEEL it in the air. Other, mainly middleaged watchers, seeing their own family situations up there on the screen and realizing they were not alone.
Sekiguchi-san is a wonderful, positive person - I haven't met her yet - but throughout the film you feel her energy and humour. It gave us all renewed energy to go back to our own kitchens and living rooms and be positive with our family members again. The kind of film experience that speaks to your heart.

When I heard EIA2 was made I looked forward to seeing it. Went and asked at local theaters...no answer...no plans....I could see showings in Tokyo and Kobe etc..nothing up here in the northern wilds of Japan's 5th biggest city.

Frustrated.

Best way to deal with frustration is to do something yourself.

hey!

** Hire a movie theater! Yes!
** Contact the film distribution company! Arrange screening rental!
And by huge, wonderful luck - discover that director Sekiguchi will be in Sapporo in May on other business, and thru Facebook she kindly offers to drop by to my screening event and say "hello and thankyou" to the audience.

I got myself a Film Screening and Director Appearance event.
Everyday is Alzheimer's ONE and TWO are coming to Sapporo!

Very excited. Can't explain how much. Had to sit on this a bit while I was setting it up with the movie theater, the distributor and Sekiguchi-san.
But now everything is officially in place and I can let the lid off my excitement.

WEEEEEEEEEEEEEEEEEE
YIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIHAAAAAAAAAAAAAAAAAAAAAAA

That's how I feel!
The movie theater seats over 300 and is right in the center of the city. Comfortable seats. Last year I organised screenings of HAFU at a community center, big success with over 200 people...but the chairs were painfully hard.

This time will be better.

Many things to think about. But the main pleasure for me is knowing that 300 people in Sapporo who live with, or work with, or worry about Alzheimer's can come and share with eachother.

It's a strange, sometimes scary, sometimes funny, often frustrating disease: but the message of these films is that with humor, openheartedness and acceptance it doesn't need to be a grim, daily struggle for carers or sufferers.

It is possible to hunt thru kotatsu garbage and smile. :-)
Usually.

So. I'm pretty chuffed. (That's British for happy..)

Tooth fairy for seniors?

When kids lose their teeth the tooth fairy comes.
When an 84 year old cheerfully shows you a gap in their gums - what's the protocol as a carer?
Book them into the dentist and drag them off to make sure there isn't anything worse happening in their mouth :-)

This time ok.
DS took his mum along yesterday morning and luckily the dentist replaced the tooth in one visit. Okaasan had minimal stress.
Last summer she was going once or twice  week for dental work - and we were trying to get her to brush more often. Finally her mystery leg pains halted that, because we couldn't get her out of the house, let alone into the car and downtown for a dental appointment.
I kind of think the leg pains were a physical response to the stress of endless dental work. So we gave up.
This time all done in one visit.
Mind you, Okaasan didn't remember the visit herself a few hours later. Late afternoon she was checking her handbag and getting dressed. I advised her to stay home as the rain clouds were trundling in - "and you went out this morning downtown and walked, didn't you..."
"Did I? Today?" . No memory of that.
It still amazes me, this blank. She and her son rode the subway together, then walked to the dental office, she had the treatment, then walked alone downtown and maybe had some lunch in a coffee shop, came home and probably slept in front of the TV. 
At 5 pm - no memory of any of that.

Summer is ending here, back to work with a full schedule.
Apologies for not blogging much. We have a cat with a war wound, I am trying to diet, helping a friend with clinic visits etc etc
But here.

* Read a wonderful short story recently about dementia.
Canadian writer Alice Munro's book "Dear Life" contains a story called "In Sight of the Lake", which appears to be a tale of a woman going to a doctor's appointment in a strange town. But, by the ending we realize she is a resident of a care community in the town. An inside view. Read it if you can.
* Also trying to track a new documentary film called "Everyday is Alzheimer's" by the Japanese director Yuka Sekiguchi. A follow up to her film about life with her mum. I follow Sekiguchi-san of Facebook and now her latest film is out. Not yet in my area, but showing in mainland Japan. Catch it if you can!

Comparing dementias...

Can't help it really....I often find myself talking to people about dementia they know, or watching videos on YouTube of dementia sufferes, or reading books...comparing, comparing.

I KNOW no two dementias are the same, because no two people are the same - and dementia is a layer of inability on top of the existing self. There are the similarities - probably most outwardly noticable is the memory loss, the habits such as daytime sleeping and late afternoon/evening alertnmess, the constant little checking movements and questions and note making.

This week I've looked at videos by film maker Yuka Sekiguchi, I went to see her documentary Mainichi ga Alzheimer's (Everyday is Alzheimer's) and now I follow her via Facebook and on YouTube.
The latest video I saw (you can see it HERE) was about her mother's reaction to Yuka's absence; actually a week or more in Australia....mother didn't realise she had gone! Was kind of shocked that she'd just come back with suitcases etc and said "I felt you were here, usual feeling you were here, you were away?"

It strongly reminds me of Okaasan's reaction in the past winter to Dear Son's 2 weeks absence skiing. The first winter, and maybe the second - she actively missed him and asked where he was every day. Last winter she didn't. If I didn't say anything about him, and she and I ate dinner together - she hardly ever asked about him.
His clothes were on the kitchen chair, his shoes were in the hallway - our home routine continued. She seemed content that he was "there" somewhere. She didn't of course remember that she hadn't actually seen him or talked to him for 2 weeks.
And this video of Yuka's mom is just that. Mom was in her own home, other family members were providing the routine of care. Mom didn't miss Yuka at all.

Of course...Dear Son and I are starting to plan a VERY exciting trip in July 2014 to Brazil to see the soccer World Cup....and what to do with Okaasan is in our minds. Probably we will leave her here at home with day service coming in every day to cook and chat. She is unable to shop and cook for herself for a week. I wonder a year from now how aware of our absence she will be?

Other videos I watched this week are:

This slightly scary one of a lady shouting at the food-eating celebrities on TV because she seems to think they are in the room with her and have stolen her food. :-(

An rather soft-focus, surging music sentimental HBO documentary called Caregivers, which looks at sufferers and the people watching out for them. Sufferers' eyes were the stand out in this film for me: how their expression grew worried and tired looking as the dementia progressed, or the blank look to anything happening around them.
Okaasan gets that worried/hunted/tired look sometime....and it is usually a sign that all is not well in her world.

12 Minutes with Alzheimer's - a US Tv experiment with the reporter and a carer donning googles, hand tapes and earphones with confusing noise as they try to accomplish tasks around a home. Oh gawd.......the clothes folding! the searching thru clothes...Okaasan to a T!

Enjoy. Maybe not actually enjoy...but food for thought.

Here in OUR world: I had dinner with Okaasan last night as he was working. I fished around in Okaasan's brain to see if her story about "a JTB tour guide in New York told me Korean food is the best in the world" was still around.
Zilch. Came up with a big fat blank. Gone. :-(
I steered the conversation into Korean food - New York - delicious - you in New York ...and NONE of those prompts brought forth that old, once-familiar story. Nothing. She just said that she'd been to New York on her way to Mexico, and that Korean food was good. A year or two she was always telling us the tale of the JTB guide and what they'd said about Korean food. Always.
Now that story seems to have gone.

Dentist again today.

A busman's holiday...

What does an Oyomesan do on a Saturday night off?

Go see a documentary film about dementia...毎日がアルツハイマー (Everyday is Alzheimer's) is a Japanese film by dierctor Yuka Sekiguchi about living with her mother and the big A - Alzheimer's.

I went to see it for several reasons: a) to compare Okaasan to this lady, b) to try and see how I and Dear Son could be doing better and c) to see what our future might hold.
Excellent movie. Really recommend it. Hate the phrase heart-warming, but it was. And depressing. And funny. And a bit scary.

Sekiguchi returned to Japan after 29 years away in Australia - so virtually a stranger to her mother - and moved into mum's home  to care for mum amid a house stuffed-full of STUFF.

Lots of familiar things: the food hoarding, the mess, the compulsive buying (toilet rolls), the repeating conversations, the stony face, the worried face, the giggles and simple laughter, the negativity, daytime sleeping and nighttime activity.
All there and so familiar.

The movie spans about two years, and mum's face changes - as her eyes show more confusion and sadness and her personal care gets worse and worse. In one shocking scene the daycare workers get mum's socks off and everyone realises she hasn't cut her toe nails in ages...and they are knarled and yellow and animal-like.
There are two interviews with a doctor - the old "What day is today and can you remember three things I told you a few minutes ago?" tests, and brain MRI, and interiews  with experts. And many, many scene of life at home.

The audience in the movie theater was mainly middle aged women - I bet all of us carers to demented family members. All of taking a night off at the movie theater with a film about our daily lives!

Comparing Okaasan? I think her conversation powers are not as strong as Sekiguchi's mum, and her determination NOT to do something (hula/social/buy a coat) is very strong. But she goes out a lot and wants to engage with the world more. That's good.

As I trudged home in the blizzard - Sapporo got hit by a huuuuge

storm yesterday - I felt that the main take-home message of the film was the importance of human interaction, the chats, the little laughs, the breaking up of a day, light, activity, routines, more laughs.
Scenes in the film between mum and grand-daughter were pretty awesome, the simple communication, and then the final scene - where mum watches a video of grandson in Australia playing piano - and her eyes soften as she enjoys the music and applauds. My old, stony heart was warmed.


So, back at the local station I popped into the supermarket to buy cat food. And then bought some sprigs of plum blossom for Okaasan.
Today is Doll's Festival in Japan, a day for families with girl children to display dolls and eat foods colored pink.

While I was out at the film, Okaasan was home with a tabletop cooker pot of food....which she somehow managed to burn. I think I'll be scrubbing that into reuse...

But, for a moment I put THAT to one side, and like a little ray of sunshine I trotted into Okaasan's room just now and asked her advice about arranging the plum blossom. Then together we cleaned the Japanese room display area and set out blossom, dolls, snacks and sweets.
(while she was kneeling I checked her toenails.....all ok there, she is still doing that herself!)
Okaasan happy. Chatting about how she had a big 7-step display of dolls when she was a child. But then all the younger children were boys, until the final girl. And then there was the war....and then her childhood was over.
Happy and chatty. Positioning the dolls, dusting the alcove.
A little bit of happiness in life.

I think I do a good job with Okaasan generally. But I'm not a chatty, big personality person at home (THAT all goes into work as a language teacher), and I envied Sekiguchi her ability to chat along, roar with laughter and generally be a force of energy in her mum's life...and her ability to hold a camera and think of camera-angles while doing domestic stuff.
But I can try to do the little bits of lighthearted things. The chats, the playing cats entertainment, the seasonal/traditional things. I can do that.

A day to be good to my Okaasan and lighten her world.

 

* P.S. "busman's holiday" is British? slang for a holiday that isn't really a holiday, cos it is doing a familiar thing. Bus drivers who go on a bus tour for their holidays aren't really escaping their everyday working lives.