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..)

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.

Day 2 - Solo dining and a letter.

Tried, and failed to be a good Oyomesan...but not my fault.

Okaasan has eaten alone for two days, since we were out Wednesday night and I was working Thursday night.
That means she hasn't had a conversation longer than a few words with anyone for 2 days either.

Okaasan's lunch things waiting for me at 5 pm.....

So, last night I was home and cooking. Made a delicious pork/potato/miso soup, and equally delicious rice with little scallops in it, plus saute mushrooms. All great.
Okaasan came home about 6.20 pm and sat watching Tv surrounded by magazines, newspapers and convenience store and bread shop plastic bags...

At 7 pm I called her in for dinner. But she looked uninterested.
"I've only just come back and sat down, I'm not ready for dinner yet. What time is it? What time is dinner? I've just come back..I'll wait and have dinner when Yujiro is home...he's in Tokyo???!!! Why...for job training....????...."

Sigh. But. Yippee. I can have dinner alone.
So I sat at the kitchen table and read the newspaper and ate the delicious dinner.
Two meters away Okaasan sat in her room watching TV. I hoped she might hear the sounds of chopsticks on bowls and come and join me...but no.
Ironically - in the paper I read a really interesting story about a documentary called "Everyday is Alzheimer's" (Mainichi ga Alzheimer), it was made by a Japanese woman who came back from living in Australia to care for her mother. You can find bits of the movie on YouTube and I think there have been some public showings too - looks interesting.

After eating I washed up the cooking stuff and my plates and put hot food for Okaasan into the lunchtime flasks, she was still watching TV. I told her that dinner was on the table anytime she wanted...and left her to it.

:-( A pity really. I hoped to give her some mental stimulation over dinner. But I think she'd eaten something out, or brought home bread and snacks - so of course...not hungry.
If I was a really good Oyomesan I would have gone into Okaasan's room and tried to get her chatting about something to FORCE the mental stimulation on her, but it was already 7.45 pm on Friday night and I was ready to relax. So, I left her blobbed in front of the TV.
Later in the evening I noticed she had eaten what I'd left out for her. She will never, ever starve :-)

This weekend winter arrives in Sapporo and I doubt she will go out, maybe I should take her out for lunch or dinner? I should make sure she actually has conversation anyway.

AND!!!!!!
The letter from the city office about day service has ARRIVED!!!!!!!
I've opened it. No excuses, just nosy...and desperate.

I think it says that she qualifies for Level 1 - which is the lowest level of service...and there are lists of day centers and forms to be filled in etc etc
Exciting!!
Dear Son is away till next Wednesday, so nothing can happen.
But the Next Stage of Getting Public Help is HERE in the house. Oh yes, yes, yes, yes!!!