Broken routines

Okaasan lives a daily routine.
Wake, doze, open curtains, toilet, doze, TV, doze....Tv....doze.....lunch.....doze, sleep...TV....late afternoon walk....shops.....home....TV...dinner.....TV.....doze...sleep.

Not this past week.

The old apartment building across the road is being knocked down. 8 am to 5 pm the whole street is shuddering with the digger, the breaker, the truck etc And even in the one hour lunch break, when quiet might come - the truck driver keeps the engine running for his essential air con.

So, it's noisy.
Gives us all stress.
Okaasan complains about it, in her usual strange round-about-way. It isn't that: "I don't like that noise" - but "Dear Son doesn't like that noise and he went to work early!", "the woman next door said "We shouldn't put our laundry outside because of the dust!" (this is actually Okaasan's opinion about ME and MY laundry...which I have reassured her about countless times this week).

So she goes out earlier in the afternoon. To escape the crash and bash of deconstruction.

And yesterday: left the house at 9.30 am!!! I went downstairs to check the money in her wallet before I left for work. And she'd gone.

Caused us a few troubles because it was a lunch box delivery day, so I contacted Dear Son, he contacted the delivery guy...and the box was left in the fairly cool hallway. Okaasan still out.

I came home at 6 pm to find Okaasan surrounded by empty and full food boxes. The ones she had bought outside, the delivered one. All scattered around on the carpet and table around her. She was eating a rice ball. The shopping receipts (ALWAYS my main source of info about her day!!!) showed that she was round our local shops buying stuff at 11 am...and THEN went downtown by subway and around 3 pm DS met her while he was bike taxi working.

So she was out for hours - 6 hours or more! All to escape the noise.

Not surprisingly, at dinner she didn't want to eat much. Didn't decide that until the food started to be served (why why is that?) - and then sat at the table watching us eat. But she was lively. Chatty. Unusual. Usually, recently, she sits silent at dinner and I'm afraid he and I chat to eachother about our working days...in English...which isn't inclusive. But she just sits and eats, eyes down. Unconnected....

Yesterday - all the activity in Okaasan's day - forced out by the noise - was actually good for her. Made her go out and walk more. Instead of hours of sleep and TV. It activated her brain much more and in the evening - instead of being exhausted after 6 hours out of the house - she was connected and chatty

Activity is so important. I wish we could get her into day service or a  club for the elderly. But she won't. She would need to be organised into it every week, and picked up from home and delivered - she isn't able to follow an appointment. And she and Dear Son aren't doing that. Only the winter care.

When I am old I will make sure to live in a situation where I am almost forced to have daily activity, physical and mental. Sitting by the Tv for hours is so bad. Sleeping in front of the TV in a lit room also bad.
There was a report recently that scientists believe lack of deep sleep over a long time is bad for the brain and allows the buildup of the substances which start blocking the brain connections and end up in dementia. Deep sleep - sooooo important. I think Okaasan has spent years falling asleep in front of the TV, and then waking throughout the night in a fully lit room with the flickering screen.

Too late for Okaasan now. Not too late for me.
Activity
Sleep.
We need them!

Fraying routines

Dinner is finished.
It's time to stand up and check there is water in the electric kettle.
Then flick the switch down to start the water heating.
Walk to the dresser and get a tea cup and the green tea can. And a wooden spatula.

Put them on the table. Open the tea can. Put a spatula of tea in the cup. Close the tea can lid.
When the water boils - the click of the switch and the light off indicates - pick up the kettle from its holder and pour the water into the cup. Stir a little.
Sit and drink.

That's the routine. Okaasan's lunchtime and dinnertime routine. Without fail. After a meal, time for green tea.
She doesn't cook now. She hardly sets the table. Clears her dishes from the table sometimes, washes a dish sometimes, wipes down the kitchen counter...

But the tea making is her solo task.

We've noticed it is fraying a little. Usually she manages to do it all in order and complete the task. But sometimes ...recently more times...not.

Right from the start actually. From the decision to make tea - sometimes she finishes eating and we are busying around the kitchen (well, ok...trying to escape) she just sits. And sits. Doesn't actually make any move to get up and start the tea process. Just sits and watches us washing dishes, putting leftovers in a box, changing the trash bag.

If we say: "Okaasan, there's water for tea!" she starts in on the routine. But often not.

Then the whole kettle/tea/cup/spatula process gets all mixed up.
Cup with only hot water.
Tea into the dirty bowl which has traces of curry on it.
Tea and water BACK into the kettle.
Tea in cup placed slightly to one side and a second cup made straight away.
Tea and cup left forgotten on the table.

More and more we notice that the routine isn't going smoothly.

Onward truckin'

Friends and students ask: How's Okaasan?
And I say: Doing ok. Life goes on in her routines. No big dramas. Luckily. Summer is easier, because he and I are home and looking after her. We fill in the gaps of stuff that she can't/won't do...and life goes on. Almost 5 years now?

And so it is. Not exciting bloggable dramas...just general calm and routines.

Here she is a week or two ago - engrossed in picking the soy beans off a plant that a neighbor gave us. Had to find her special, flower arranging scissors to do it and enjoyed arranging the newspapers and towels on the carpet etc. Sorted out the good beans.

I started doing the job myself in the kitchen, but suddenly realised it was exactly the kind of job Okaasan should be doing - good for her brain and hands, and giving her a feeling of contribution to family life, an opportunity to do something she knows - and to show a British woman what to do with this most Japanese of foods.

We've had a few family meals out to local restaurants. Had a few toilet accidents. Found more than a few old food packages with rotting food inside. Baths and laundry. Dole out the money.

Slightly interesting...but only slightly!!...she has several times mixed up the TV remote and the cell phone. Waves the cell phone at the TV and wonders why it isn't changing channels or turning off.

And when we ate soba noodles at home recently, she twice tried to drink the noodle dipping soup - mistaking it for a glass of wheat tea? Even though we were talking about noodles, and 1 meter away her son was standing at the kitchen counter and dishing out noodles.

She still picked up the brown liquid to drink.

A little sign of beginning to mix up objects that should be familiar.

But really nothing else to report on the Okaasan front. We are enjoying the end of summer, with food festivals, friends and working events.

Have to start thinking about Okaasan and winter activity soon. Whether to try and get her interested in day care and hula dance. Or just to give up on that and go directly to arranging a taxi once or twice a week for her.

The taxi driver could come and get her and drop her off at the local subway station, so she could take herself downtown for a walk. Then some system to get her home again.

She needs to be going out at least once a week to see more than her room and the TV.

Anyway. All calm.

"I can do it!"......or not...

Carer's ego trip.
I sometimes wonder: "If I stopped doing all the things I do for Okaasan. What would happen? How much could she do herself? All the planning, shopping, cooking, serving, washing up, laundry, cleaning, money managing, arranging of life's necessities....if I just stopped. What would happen?"

I get a glimpse of the answer when I am away from home for a few days and Dear Son does most of the above. But not the cleaning or the laundry. It's a male thing, isn't it? I come home to a carpet strewn with newspapers and supermarket flyers, old bits of food and lunch boxes nestling down under it all, random underpants and socks. Unwashed tea cups with dried tea stains.

And that's just our 2nd floor living room. :-)

But, seriously. I do wonder. How much could Okaasan cope? She wouldn't starve. She could buy or find food and eat it. Maybe cold. She can go to the toilet herself. The trash would mount up around her ears. But she would get by. I guess.
When Dear Son found her 5 years ago in her house near Tokyo she was "getting by" in a trash filled home with money and rotting food, paper and clothes around her. Eating at a local restaurant every day and fighting with the post office about money she believed it had stolen from her.
Which is why he brought her to live with us. So the trash wouldn't mount up, the food would be served and the money guarded.

Last night turned into a little experiment. In "cooking"...well in heating up pre-cooked dinner, serving and eating it.

Okaasan came home from a successful day care trip. Had enjoyed a bath, lunch, chat and a movie with popcorn!
At 5 pm I was starting to prepare her dinner to put into flasks before I headed out for evening work.
I usually do this once she has settled down by the TV, it avoids all the confusing conversation (and my guilt) about yes-I-am-going-out-you-have-to-eat-alone. I prep it all, put it on the table and then cheerfully tell her just as I am leaving.

This time she found me starting the prepping.
"Oh, you don't need to do that! You are busy, I can wait till later! I can do it myself!"
"You can? Usually you don't. So Dear Son and I prepare for you. Recently you don't cook, we help you, don't we? Can you do it tonight? Wonderful....okay....thankyou..."

So I left her to it.
I left pre-cooked  rice and a tofu dish in plastic boxes for reheating. I  left spinach and soy sauce. I left the instant soup packets. All on the kitchen counter.

Very interested to see what would happen.

A snow storm, work and delicious local curry restaurant dinner alone...came home about 9.15 pm.

All the food boxes and food was on the kitchen counter exactly as I'd left them at 5 pm.
Okaasan was in her room watching TV.

Oh well. Guess she wasn't hungry  after day center popcorn. She slept and watched TV instead.

I put the food in the fridge and went upstairs. TV, wine, cats, e mails....get ready for bed.

9.45 pm a little voice comes echoing up the stairs:"Amanda-san! Amanda-san!".
"Are you home? I didn't eat anything! I'm hungry! Is there any dinner?"

So back to the kitchen and got the food out again. Heated it up. Okaasan standing there hugging herself and looking a bit manic. She didn't remember anything about the 5 pm "I'll do it myself" conversation of course. 

Had just watched TV and slept and watched TV through the evening until the hunger drove her into the kitchen/or she vaguely heard me coming home....waited to be fed...but nothing came...so emerged into the kitchen and then, seeing no food on the table or counter...didn't look in the fridge...went to the bottom of the stairs to call for help.

So. If we weren't making and serving food at set times of the day, she would be hunting for food at random times when hungry. Would that be bad? I guess in the long run - yes. The routine of the days, the mealtimes would all get blended into a stream of TV/sleep/eat/TV/sleep/eat.

It is probably better that she is kept on a routine of lunch at 12, dinner at 7. Now it is daytime. Now it is nighttime. 
So. I have a value :-)
As I said, carer's ego trip.

Still oblivious.

Okaasan still hasn't asked about hula dance class.


And we're not saying.


And that is the wonderful PLUS side of managing the life of someone with dementia...you can let tricky topics slip and slide away.


I guess that Okaasan lives in the same day, over and over again. Like my fave movie "Groundhog Day". She is always sitting there in her room, the TV is on with the familiar faces and sounds, she is wearing her flowery pajamas, there is a newspaper and magazine on the table and shopping receipts to check, if she goes to the kitchen there is lunch in flasks on the table or we are cooking and serving dinner. There are side trips to the toilet and to wash her face, or take a bath and do a little handwashing of clothes.
And that day goes on and on and on.
She isn't connected to the time/day/month particularly. It could be July or September, or Sunday or a Thursday. Maybe morning.


:-)


For us it a holiday weekend in Japan and we are having our annual, mammoth BBQ.
Did the big shop yesterday at COSTCO, the American superstore.

Cat food as a BBQ extra...

Today about 25 people will come to consume all the beef and fish and salads and cheesecake and beer and wine.
I'll feed Okaasan in the kitchen quietly late-morning and I expect she'll head out for a walk in the afternoon and hopefully feel confident enough to come home when she wants to.
Last year? I remember seeing her standing out in a parking area some way from the house, standing there for 20 mins or more looking at the house and the late guests still in the garden - and standing there. NOT coming home.:-(


So. Into BBQ day this year. 


and DON'T mention hula!!!

Routine, routine...

Trying to banish all thoughts of scary men (and it IS always men isn't it!), I gave Okaasan a day of good, reassuring routines.


Took the newspaper to her room and chatted about the weather.
Started the morning bath running and gave her the hair dryer.
Left for work with a cheery "Goodbye! I'm going now!"
Lunch delivery while I was away.
Came home at 4 pm and my coming into the kitchen kick-starts her late afternoon activity - so she got up, got dressed and set out for a walk.
Laid the table for two and heated up various leftovers.
Okaasan home at 6.15 pm. More weather chat.
Dinner on the table at 7 pm.
An hour - an HOUR!!!! - of chat about flat fish, prewar fish supplies to Kawagoe, wartime food, fish types of Japan, fish prices, Okaasan's mother's family in Sapporo a long time ago (10 children !!), crabs, rich Chinese tourists, flat fish...


....and finally I washed my dinner dishes and she washed her dishes and we both retreated to our living rooms and TVs.


I didn't put the sign on the front door, and decided to switch off the outside light. There is a scattering of ice candles outside, in various stages of success as I battle with buckets and water, so I think any bad man can readily recognise that someone cack-handed is living here.


Not a scary man in sight.
I hope.


It's February!!!! He is home....???? Saturday??? Sunday??? 


This past week I've heard 3 different student stories about relatives starting day care center attendance. Sounds soooooo nice. Hope I can push the mountain of indifference (Yujiro) and get Okaasan assessed, accepted and willing to go to day care by next winter.
That's how I think of it: first have to persuade Yujiro that this IS something worth pushing for. Then of course, supporting him while he persuades Okaasan to go for a health check with a despised doctor...then beyond assessment and far, far into the future there would probably be a visit to observe a day center and then hopefully a grudging agreement to try it.


One day my day care center service will come.
;-)

Bits 'n pieces.

That beach in Australia...is fading into a holiday memory now.
Real life kicked in finally.
This is actually week with no public holiday - so Monday to Friday work, but nice to finally see my Monday students again. :-)


First snow in the city limits in Sapporo, on top of the local mountain....but still. You can see the white from downtown.


All jogging along at home.
Okaasan eating what we leave out in the kitchen for lunch, sleeping all afternoon and heading out about 5 pm for a little neighborhood walk...usually home by 6.30 pm or 7 pm. She really doesn't go far these days, the Seicomart convenience store or Seiyu supermarket. In Sapporo now it is dusk at 5 pm and cold, but Okaasan isn't tuned into that at all - and off she sets when the best weather has finished. She's on a yogurt-buying-spree at the moment. She buys endless pots of it.


This week she did a little laundry for herself, dropped her favorite rice bowl on the kithen floor and smashed it, giggled about the cats etc. I cooked her old fave food potatoes/cabbage fried up...but it wasn't quite as she does it...so there was endless analyzing of THAT scintillating topic at the dinner table - I am getting better at just gritting my teeth and sitting thru this, but OH MY GOD - really....why do Japanese family members do this to eachother? Why not say: "Oh it's a bit different from usual, but tastes good, thankyou for cooking it....and what did YOU do today?"????
Instead Okaasan, with Yujiro's inevitable encouragement, go on and on...and on and on about "oh this is different, why is different, oh it's different, what is it different.....yadda yadda yadda".
Drives me nuts.
It's potato and cabbage fried in a pan for God's sake! Not centuries old traditional New Year food!!!!


Ahhhhhh. Just need to get that stress out. Thankyou.


I hope Okaasan just drifts in this daily routine for a while, but I often worry that when I come home one day I'll find her in a crises - not sure exactly what of course, but something. Some family accounts in the dementia books tell how the family come home one day to find their dementia sufferer in a huge mess in the toilet, or upturning all the contents of the kitchen or ripping up all the flowers in the garden - and that for some reason unknown the dementia has reached another stage.


Instead the cat gave us stress: we were both working late Monday night (left notes on the table and phoned Okaasan to buy something for dinner at the supermarket)....but the cat? Chichi obviously came home. Found nobody and buggered off again. Until now. Tuesday evening, he came home about 45 minutes ago....I guess he was away in his Hanako alternate reality.
Maybe he needs a cell phone with a GPS function so we can track him too.


Two bits of good news....more to do with me that Okaasan though...


I can now reveal (because she says it is ok), that one of my oldest friends in Japan is MOVING TO SAPPORO FROM TOKYO next year!!! With hubby and baby! Her husband has been offered a job here and they will move in early 2012.
I am so selfishly happy - never ever thought one of my Japanese sisters would actually come and live just along the subway line from me. I am imagining all sorts of fun activities - barbecues! coffee shops! izakiyas! skiing!...oh...she has a tiny baby....well...maybe afternoons on the carpet with toys and nappies then! But it is happy happy news.


And the other is a work thing: I've been introduced as a possible teacher to do examining for the IELTS test, the big international English-ability test that people who want to study in the UK (mainly) have to take. 
I teach it sometimes and now I am taking the first steps to maybe becoming a local examiner for the speaking section of it...or even teaching a short course in it locally. All good professional advancement :-))


Anyway. Tonight dinner is easy - dear kind wonderful generous Tamiko gave me salmon roe - so tonight will be rice and fish eggs and soup and vegetable/salad. I am wondering which part of that I can muck up.
Or maybe we'll have an interesting dinner conversation instead.


P.S. After that amazing giant turd story in a class last week I decided to tell the manager of the class, so that if there are complaints about that student from his classmates - at least the company are forewarned. The manager was supportive about it and said if it gets worse he's call the family....but I'm hoping THAT kind of behaviour doesn't happen again in my class!......I feel for Okaasan's hula dance teacher and classmates because I am sure they had to work around her...but thankfully I am pretty sure she NEVER told a giant turd story in public!!!!!!

A Year of Living...dangerously

We moved to this house a year ago - living all together in the same crazy mix.

So, it's the long weekend holiday and I actually had almost 3 days off. Yujiro was home some of the time thanks to bad weather stopping all the ski lifts and we did stuff together around the house. I also managed unheard of luxuries (for me in the past injured year anyway) of getting downtown twice alone to have lunch in a nice Italian restaurant, go to the woodchip sauna twice AND - GET THIS - DRIFT AROUND THE SHOPS AND BUY CLOTHES!
Just being able to walk where I choose, alone and with free time. Such a luxury.
Mind you, I did sit in the sauna salon lounge and reread Contented Dementia. I thought it was  a good idea because now I know Okaasan so much better.

As the book advised I actually wrote down in first person narrative all her hamster-wheel stories - wartime/Kawagoe/food shortages/warwork/father/crabs/picking vegetables etc etc. I could easily write 9 of them because now I know these stories well.
I think Yujiro and I are better at getting her onto these stories and letting her rabbit on and on. Although if she joins a conversation with a slightly off-topic piece of information Yujiro is still liable to say:"but we're not talking about THAT!" which isn't what the dementia book advises. If the client joins in, let them talk - even if it isn't so connected.Let them take the stage with their familiar topic.
The book also refers to the constant, repeated question that the client is asking. But I don't think Okaasan really has one. "What day is it?", "What time is it?", "Where's Yujiro?" aside.

All seemed well with Okaasan. We shared some meals with her and chatted her along on stuff. My coat and the buttons seem to have vanished, she said to Yujiro that she'd been to the sewing shop but forgotten to get the thread and was going back.
It's a bit tricky this one - how to gently remind her, without seeming to hassle. I really don't mind how long the button sewing takes - I have another coat. But what was designed to be a pleasant thing for Okaasan to do - seems to have thrown up all sorts of problems and I don't want her to start having negative feelings about me/the coat/the sewing.
I did wonder if I should go and buy the button thread and give it to her...or would that be giving her feelings of inability?

Yujiro went off skiing this morning.
I started Okaasan's bath. Reminded her about hula dancing. Reminded her about the bath. Gently kept her on preparation schedule. Served a light 11.30 am meal for her. Encouraged her out of the door.
45 mins later Yujiro telephoned to say that there was NO hula class today! National holiday etc. Okaasan had gone to the department store culture school. No class. She'd called him....(bet THAT felt good for the super-cool ski instructor to have his mum on the phone about hula dancing!!)
It's a real bummer after all Okaasan's confusion in the past week about the class schedule. Couldn't come at a worse time. Strange cos usually this class meets even on numerous Japanese public holidays.

But not today.
So poor Okaasan had got all gussied up for nothing. A negative experience connected with the thing she loves doing.

I came home about 6 pm from shopping. Okaasan was fast asleep under the heated table in her room.
I made dinner, called her several times. Stood in the door of her room. But she slept and slept.
Finally I sat down and ate dinner alone at the kitchen table and hoped the smells and sounds would rouse her. They didn't.

Yujiro called to say: don't worry, probably she ate out. Probably she's tired. It's my fault, I should have checked.
Of course somewhere there is a class schedule, and  I'm sure the teacher made an announcement last week. But that's no use to a lady with dementia....
Yujiro should GET the schedule and put it up on the kitchen noticeboard.


So there we are. Nice day. Followed by disappointment. I tried to have some kind of relaxing evening and get ready for classes tomorrow.

And so Year 2 of Living Dangerously starts....

Getting into a routine yet?

Well. We've all been doing this new life now for 1 month.
Are we getting into a routine? Is it getting easier...for all of us?

In some ways, yes.

The apartment basically is ok for okaasan. She covers it all with clothes and bags of stuff, but she seems happy in it. She can use the bath, with one of us in the living room in case she has problems, and she can prepare simple foods for herself with the microwave and the hot water pot. She can go out to the shops, and get home again safely. But we haven't got her into any kind of life here where she can meet other people - Hula dance classes for example. We have to try more on that front.

Daily routine is kind of getting set. Although now is an unusual time because it is winter holidays and he is home with a torn ligaments. And I am home on holiday. (The cat is SO happy to have us here by the way!).

Every morning I go into okaasan to say Goodmorning, give her a weather report and check that the heating is ok. About 11 am or a bit later she comes into us for a mid-day meal. We try to have a small breakfast, so we can eat our lunch with her. Otherwise the center of the day is full of food preparation.
Food is all New Year things at the moment - today I got praise all round for my ozoni - soup with vegetables and rice cakes. But the rest is easy: the pot of vegetables and chicken that okaasan made, and various seaweed/fish paste/bean things that she has bought. In duplicate.

After midday meal she goes home and we have some kind of afternoon.

About 6.30 - 7 p.m. we telephone her to get her ready for coming here for dinner.
We set the table. We get out the extra chair.
She comes and we eat. He chats away with lots of funny stories. I do oyomesan stuff.
I can now time the green tea making and know how to boil the water, how much tea to put in the strainer - how to pour it into the soup or rice bowl so it can be drunk and clean out the bowl.

Okaasan usually stays until about 8 or 8.30 p.m.. Then I walk back home with her and check the heating one more time.

Then I come home and we spend the rest of the evening together, drinking more alcohol and watching movies or TV.
(and yes, if you're wondering...we do have a love life too...the first week or so he was keener than me...now I have energy and interest again!)

But there are stresses. "My" time is so precious. In the psychology of this situation I know I am escaping a lot. Coming upstairs here to play computer games. Lots of evasive actions: the other night I found myself, rather bizarrely, repairing the hall curtains just before New Year's Eve dinner...looking back, I know it was because it was something I needed/wanted to do. Without THEM.

I guess the situation is made a bit stranger because HE is home and sitting on the sofa all day in front of TV. So I can't find my own time away from okaasan even in my own living room. I come upstairs to the computer room a lot. He did so much New Year cooking and I worry that he has been standing on his leg too much.

It all makes me think about how, if we move house, we can make it easier. The other day I was in a friend's big apartment as he packed up to move back to the US. Vaguely I was looking at the large apartment and wondering how it would be for us to live there. In fact we really need a garden and a parking space...but it was interesting to run the ideas through the brain.

The apartment had a big room off the hallway and near the bathroom - and then a separate door into the living/kitchen/bedroom area. I imagined us living there. But - then I knew - I would REALLY need more than just an internal door between me and okaasan!
I want to be able to walk around my home naked.... if I want. I want to stretch out drunk on the living room carpet. Dance with the cat in my pyjamas. I want to chase my man around in his underpants.

I DON'T want his mum in my living room unexpectedly!!!
So. Whatever we do. That would have to be a consideration. We need more space. But I need MY space.
Many families in Japan live behind the same front door, but in separate rooms with their own TVs. But I can't do that. I need to be able to close the door and know that my home in mine.

Anyway. Tonight I am escaping to dinner with a friend. Now I so understand the feelings of mothers and housewives: the desperate need to get OUT and be oneself. To return to regular, adult, singleperson life. I think maybe in the past I wasn't a very understanding friend to many people who were trying to find some balance between themselves and their family-life: wanting to go OUT, but also pulled by responsibilities at home.

Now I get it.