Home and Away

Home

Life with Okaasan pottering along - no big dramas. She seems very mellow these days. Basically happy in her day to day routines.
Going for walks in the neighborhood late afternoon - once or twice downtown alone. But her Going Out trips are generally more limited in scope now. She sits and watches TV, sleeps, watches more TV.
This week's bath time I was in the house to make sure she got out ok - which she did unaided. We had lunch together, a little chat about wartime Japan. 
Okaasan did some "smalls" washing the other day - managed to use the washing machine on spin cycle, but then got pretty confused about HOW to hang the clothes up outside: the outside sandals, the clothes hangers, the space, the inside shoes - all those steps took a bit of time.

There was a program on TV about a manga artist and his mother who has dementia. Okaasan was watching it and laughing as the mother failed to recognize her son in a hat etc - and she actually came to the dinner table and talked about it: how funny it was. Unusual really - she hardly ever talks about what she has just been watching on TV. This obviously made an impact on her.

I've written before: the elephant in our midst is Dementia. 

It's a very big topic in Japan right now of course - all this aging society etc. But we don't talk about it at all within our family. Seems too sensitive? Recently I found myself stopping my chat-flow as I described an 89-year-old student who is caring for his wife with dementia...."err...err..he is very active....err..and he is caring for his wife...err...she is sick...". Self-censoring.

I have film promotion flyers/posters for the film screening this Saturday - and I am trying to be careful to take the car window flyer down when the car is parked outside the house. In case Okaasan sees it and feels something negative about me and this event. Over-sensitive?

She knows she is "bokke" - "forgetful" - but has the storyline to us that it isn't so bad really. Just natural old age. Whether she has deeper worries on the topic we don't know. If we react to an incident of memory-/confusion we try to joke about it and laugh: your body is healthy, but your brain is a bit...you know!! It's ok, we can help you. No problem!

But we have to be watchful about her life - care for her and fill in the gaps.

I watched the film "Everyday is Alzheimer's"on DVD again yesterday at home - because on Saturday I probably won't get the chance to enjoy my own film event...

There's a scene where the day care staff come and discover that Hiroko has long, yellow talon like toe nails. I remember that when I saw this scene 3 years ago in the cinema I was amazed: how could the family not notice this? Shocking! (and kind of brave to admit that on film...)

Now I watched it and realized we had exactly the same situation with Okaasan this winter: finally realized that she had stopped cutting her own finger and toe nails. Long talons growing and curling around the toes. Yuk. Actually her finger nails are long now....
You CAN live with people and not see this stuff. They are wearing socks. You don't focus on the details of their personal care. They are walking and talking, not incapable in a bed. So you aren't looking out for such personal things.

It was good to see the film again.

Away.

SO!
If you are in Sapporo, north Japan this Saturday....

COME TO THE FILM!S!!!!!!! and come and say "Hi Amanda, I read your blog!". I'll be the curly-haired foreign woman running around in a panic....easy to spot. 
Lots of good buzz about the event - local newspapers will feature it this week and I have a wonderful team of helpers ready to staff the event. The theater seats over 300 people....
Come and join us for toe nail clipping and other tales.
Personally I am so looking forward to meeting the director Yuka Sekiguchi - she has been my inspiration for care with humor. It'll be great to hear her talk about her films and after it is all done, I get to have dinner with her too. ：－）

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..)

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.