Everyday is...

Everyday is....this.

I'm promoting the films "Everyday is Alzheimer's" currently and it's made me think about the everyday....everyday....

I took this photograph in the evening. But it could have been 9 am. Or lunchtime. Or mid-afternoon.

Because every day, every hour for Okaasan is the same. She sits or stretches out between the sofa and the heated table, with a blanket over her - and clothes and papers and bags all around.

Sometimes I clean. Take up a layer of paper and clothing. Remove the rotting food and important letters. Leave the rest.

This IS Okaasan's world.

And I expect this scene is repeated in the homes of many dementia sufferers.

Okaasan is experiencing this moment. "Later" she will tidy up, or put that away. Always "later". Meanwhile, the familiar things are all in sight and can be reached easily. She can pick up the same things and look at them for a few moments. Watch a bit of Tv. Then pick up the same things again. Sleep. Wake up. Tv. Look. Sleep.

Apart from going to the toilet and coming to the kitchen for food - when Okaasan is at home she is here. She has two rooms. But hardly stirs from here.

It looks awful to us: we feel the need to clean and tidy. Make it 'nice again'. Is she leaving it like this because she lacks the energy - mental and physical - to do anything about it? Where to start? Depressed about doing it?

If I offer to help...she gets very stressed, picks things up and puts them down in quick succession, nervous that something important will be thrown away.

 But I stress about it myself less now. It's Okaasan's familiar nest and I don't disturb her. Just let her be.

Recently an 80 year old student went to visit an old friend who she knew from the mountain climbing club. My student is still an active member of the club. And the church choir. And her residential community. And. And .And. Everyday rushing around doing things.

Her dementia-free life is so different from Okaasan.

My student's friend is 90 plus and living in a care home in the hills near the city. Still recognizing family members and visitors, but needing help for feeding and toilet etc. Repeat stories, locked away in the 1920s Japan of her youth.

My student was sad after the visit: "From the care home you can see the lights of the city, but it is far away. There is nothing around there. She must be so lonely and sad. I NEVER want to live in such a place. Her family say she is 'happy'...but..."

I wonder. I suspect her friend is happy in her own way. 

Now her world is her room, the care home dining room, bathroom, living room. The blanket. The TV. The smiles from staff. The flower in the windowsill. The magazine.

A much smaller world. But giving her reassurance and pleasure in every day.

She has no concept of "I haven't been out to the shops for weeks", no concept of being away from the city. I am guessing.

Here and now. This moment.

Everyday is Alzheimer's.

Alive in Sapporo!

This is the public me....

Next month - May 23, Saturday at Sapporo Plaza 2.5 movie theater in Sapporo a double-bill film event, PLUS a visit from the director of these two Japanese documentaries!
THREE HUNDRED tickets will be on sale on the door - there are going to be laughs and tears and learning and sharing. It'll be a great event.

I fell in love with the first film when I saw it about 3 years ago. One snowy afternoon in a tiny movie theater. Sitting in the dark surrounded by other middle aged people all seeing familiar scenes on the screen - the family members of people with dementia.
Loved the first film. I was excited that film 2 was coming. Then disappointed that no local theater planned to show it. 
Now they will. 
Well, I will.
Booked the theater, booked the films, caught a lucky break with the director being in town for a conference of the Japanese Society for Dementia Care....and spent a somewhat stressy time getting the flyers designed/approved/printed.
Now I am coasting down with one month to go - to promotion, organizing on the day volunteers and generally worrying about things like microphones/tickets/timing.

:-)

So that is public me. Headless chicken with huge ideas.

Private me.
You know....

We got Okaasan along for a hair cut.
I booked it, then DS was due to take her. But.....he forgot, and she didn't remember of course. So big apologies to the salon and she went a day later.
Looked great afterwards. It lasted a week.
Then she had a bath and her hair looks all matted and strange.
Not sure why - she isn't washing her hair for sure. Or she is washing it with soap? Or what? A nice hair cut now looks very bad.

Her walking is back to normal. Goes out late afternoon. Usually the local shops. Comes home with a stash of familiar things.
Family dinners with hardly any conversation - more and more Okaasan just looks at her food and eats. Even if we are talking in Japanese about general, happy topics....she hardly ever joins in. Will answer if we directly prompt her - but she doesn't join the conversations much.
Thankgoodness DS is home and he and I can talk.
Also that he is housewifing a lot for me.

I had one of Okaasan's summer blouses repaired in a local repair shop. The woman did a wonderful job and it gives Okaasan something more to wear.

Another summer for Okaasan. Hopefully she will enjoy the walking and foods. Flowers and chat. Simple stuff.

Oh...and going back to me...
I almost fainted at work recently. At the end of a long day. Started blacking out in the classroom. Rescued by a student who pushed the whiteboard back and got me down on the carpet.
Dear Son came rushing over and he and the student called an ambulance, mainly because it was 6 pm on a Friday and hospitals start closing.
Ambulance ride to a local well known brain hospital! MRI!

Brain all ok. Blood pressure was low.
Now I bought a blood pressure checking machine and I am keeping records. Trying to eat at regular times. Trying to rest.....

Trying....

But got 300 tickets to sell.....

...and back...

Thursday.
Not a good day.

Okaasan had a great pan-burning event at lunchtime. Really, REALLY burned the pan I had left her lunchtime tofu/onions/egg dish inside. 
I could smell the burn as soon as I opened the front door. MUST use/get better hot flask thing to leave her lunches in. She is beyond heating stuff up now. And I am beyond pan rescue.

And then evening....

Okaasan went out for a walk. Cell phone - OK. Coat - OK. Hat - OK.
No front door key.
I had evening classes and left her dinner all ready in the table top hot pot. At 7 pm I called to see that she was home and eating it.
Found she was in the old neighbor's house. In the phone call I couldn't really clearly understand from her if she was because she was being social (unlikely) or because she had no front door key (more likely). My student arrive 3 minutes later - so at 8.45 pm when I got home I discovered it was the No Key scenario and so Okaasan needing digging out from the neighbor's living room and feeding a very late dinner.

Agh.

My fault really - I didn't check that she had her key when she left the house at 4 pm.

We have to check all of this every time for her. We should also put a big notice by the shoe box in the hall, to remind her to check.

Not a great day.

Springing forward

Maybe.
"Spring" as a concept is almost here in Sapporo.
Sometimes. Maybe.
There are days of warm sunshine, when crocus flowers crowd the gardens and park. We walk around smiling.
Then there are days of ear-burning temperatures, swirling snow flakes. Hunched shoulders and grimaces.

Okaasan is alternatively out and about vs snuggled in the heated table asleep.
Her solo walking is getting more regular and safer. A few times coming home late and tired. A few times with no telephone/GPS. No falls.
Dear Son has been home more as the ski season sputters on - so Okaasan has had more conversation and family mealtimes. She even washed up the dinner dishes twice - but the fact that I remember that and recall it here shows you how irregular that action is.

We notice little things about Okaasan and her life-view that tell us her brain cells are drifting away, although day to day she is a happy old lady - giggly and smiley.

* VERY giggly and smiley if she can get alcohol! We have just finished the small bottle of sake that we've been giving her tiny amounts of at dinner time recently. We pour a little in a cup and then hide the bottle quickly.
On the last night I gave Okaasan the bottle and cup so she could look at the label and pour for herself. She put the bottle to her lips, threw back her head - and downed the remaining sake in one! Guy style!
No Japanese ladies of her generation - and probably many generations after too - would ever do something as uncouth as that :-) It's a childlike untrammeled joy in something tasting good. Very uncharacteristic of a polite, elderly lady.
And a very good reason for hiding bottles of alcohol.
I think the day is a-coming when DS and I won't be able to have glasses/cans of alcohol on the dinner table - because if we have it and Okaasan spies it - she wants it, and more, and more...

* Another evening we gave her the box of heated rice and her rice bowl to serve herself. However, there was a tea cup in front of her too - and I watched Okaasan carefully move the steaming rice with her chopsticks - from the box into the tea cup.

Giggles all round.

* Missing stories:

Sad proof that one of Okaasan's old stories has gone - temporarily or for ever.

I have a new student who is born in Japan, but introduces himself as Korean. I was talking about that with Okaasan. How many such people have "yagi" as part of their Japanese family name etc.
I waited for her once-familiar story to appear: My friend at school was called Tamako Yagi, but the day the war ended, she never came back to school - maybe she was Korean and her family went back? 
I've heard that story a million times. Three/four years ago.
Now I told my story a few times, she told me that "Yagi" is a common name used by Korean families in Japan etc. But her school friend's story didn't emerge.
THEN I told her story as if it were my own.
One of my students wartime had a school friend named Tamako Yagi, but the day war ended she didn't come back to school...
Nothing.
Okaasan just made "really? Yagi is a name used by Koreans in Japan" replies. 
Her own story, once an endless part of her repertoire, just gone?

As a reader of this blog commented once: the annoying, repeated stories become almost like friends - when they have apparently gone, you kind of miss them.

The Oliver James book Contented Dementia recommends identifying A Primary Theme - a story/experience that the "client" holds special, that as the dementia progresses you can use to enter their world by key words/gestures - when speech is disappearing.

I made a list of Okaasan's favorite stories when I read the book - four years ago?

1. Korean food is best - New York and the JTB guide - Ikebukuro restaurant.
2. Tamako Yagi and school.
3. Father bought crab home and I waited up for him.
4. Father drank sake and gave me drinking snacks.
5. Our house had a telephone and neighbors came to use it.
6. War started and there were no lessons, I made army underwear and picked vegetables. No food.
7. I played with my brothers by the river.
8.The US didn't bomb Kawagoe because of its history.

Now? 1 and 2 seem to have gone. We don't hear those stories now. Even if we prompt with the key words. The others are maybe there - 6 and 8 particularly.
And so it goes....

MY life - and kind DS too - was rather than over my the cat crisis of a close friend. One of her indoor cats vanished for 9 days. As she had just come out of hospital after knee replacement, we headed the search for her - with a poster and flyer blitz of the neighborhood. Police and vets and every possible way we could think. Rushing away with a cat trap in the middle of dinner when a possible sighting was reported etc
On the 9th day - my friend found cat poop and hairs in her English classroom........
A few hours later she had caught her kitty and he is fine. We are all amazed.

And.

Plans for the screening of Mainichi ga Alzheimer/Everyday is Alzheimer, the documentary films by Yuka Sekiguchi - plans are in motion. Just about to get the event flyer printed...6 weeks now to the event, time to crank up the promotion and gather a screening day team for May 23.

More on that later.

I see sunshine and blue sky...it may be spring...I should go check. :-)