Christmas time again

This is sad.
I am updating a blog on Christmas Day.
And you are reading it.

;-(

But 'yknow, this is the first day with hours of empty nothingness I've had since...November?
It feels like it.
Endless year-end parties with students, classes, a mammoth edit job which I was determined to finish by Christmas. And all the usual shopping/sending panic. And some jazz concerts. Work/Tired/Fun.

Okaasan agreed to go to the supermarket with the day care woman by taxi. But I didn't get her in a bath. Shoot...maybe that means she hasn't had a bath for about 10 days....maybe I should.
Dear Son is away until next week, when he will be home for 2 days.

So. Okaasan and I for Christmas 2015.
I did it easy. Worked until about 4 pm on Christmas Eve and bought some fried chicken at the supermarket. Took it home to serve with veggies and a little wine. I decorated the table to show it was Christmas...and Okaasan and I sat down for dinner.
I called up DS on my smart phone video and he shouted greetings from the ski lodge at Okaasan, then we ate and I heard the wartime and food stories.....and after 45 mins I retreated upstairs to a Hugh Grant film and wine...

I didn't give Okaasan a present. Because I am sure she doesn't have one for me, and it would be awkward.  So, just companionship and food. Enough really.

A large piece of salmon got delivered the other by somebody. Okaasan just left it on the kitchen table under a bag. There is no note. She has no idea where the fish appeared from. Makes it impossible to thank whoever sent it....

And so.
I am driving to the ski school lodge this afternoon to meet my man and have dinner with him. Snowstorm here now. Hopefully ok. If the roads are  too bad I will turn back. There is a Christmas party at the lodge for the staff tomorrow, but I have plans with friends.
So.
Christmas 2015.....

Trying to bring about change...

He was home for two nights between ski jobs.
Arrived late on the 1st day, left early on the 3 rd day.....

It didn't leave us much time to make plans for change.
WE looked thru the elderly assist equipment brochures that day care gave us. We decided a chair/step that you put in the bath would be best - to make Okaasan's sitting higher. Then she can still sit with hot water around her and stretch her legs out...but when it is time to get out she will be able to firmly grasp the side of the bath.

And that is really all we decided. I guess he has ordered it. I don't know.

Okaasan was taken off in a taxi to the supermarket by the helper on Wednesday. I didn't talk to her that night, so I didn't get any complaints. DS says he will try to phone her every Wednesday afternoon to pump her up for going out for a useful walk.

So he is gone again, until December 28th.
I have lots of plans for the last week to Christmas, work projects to finish and fun things lined up.
Okaasan is just in her room.
I offered to take her to the supermarket today in the car, but she declined. I couldn't be bothered to force the issue with her. She asked about walking outside - but now we 've HAD 30 cm of snowfall that is out of the question. I could have taken her hand in hand for a walk...but I didn't.

Just leave her be. Feed her twice a day, take out the rotting food, give her money for the when day service come for the shopping trip. That's it.

I am nervous about getting into the bath situation and fight with her again.
I think I'll just leave her. Until we get the assist equipment.

My end of year work situation is busy - Okaasan and her needs are low on my Must Do list.

Not the best of weekends.

Started well. Very well.
First there was this.

That was Saturday. All great.

Came home mid afternoon, hardly any snow in the street now (big, strange warming here), so I let Okaasan go out on her own for a walk. I escorted her to the end of the street over a few ice patches. She came home 45 mins later looking very tired, with a bag of boiled foods - oden in Japanese - which had leaked all into the bag and down her trousers...

Anyway. Sorted her out. Made dinner. I went out to friends for dinner. All good.

Today. Not so.

Bath time. After 1 hour I went into the bathroom and suggested that it may be time to come out. She was not happy....I left her some more...then one hour and 15 mins later tried again. Started letting the water out of the tub to encourage her...

Didn't want her to get all faint again....

She was getting antsy with me. She didn't have the energy to pull herself up. I am trying to help. Putting my hands under her arms to give her a starting lift...she starts screaming at me and swatting at me with her hands.

My antsy is rising. Voices rising. I can't actually lift her because the bath is low in the ground....I expect the neighbors can hear us shouting...

I leave her. Go away to calm myself down. Check every 5 minutes. Worry a bit about her getting cold in the waterless tub. Bang me head on my hands.

After another 15 minutes she manages to get out by herself and is all sweetness and light. She has forgotten. I haven't.

Serve lunch and eat it with her. Wartime rah rah rah memories. Oh joy.

Mid-afternoon I suggest she goes for a walk, escort her out again. 

She starts to complain about "that woman who comes. That day service. I don't need that. Look! I can walk! It's a waste of money! Why does she come???".

Which of course is true. On a Sunday afternoon when I am not working, so I can cook lunch and dinner for her. And make sure she gets out safely. With door key, money, cell phone. On a day when there is no snow in the street. Today. But not usually in winter in Hokkaido. 

We have booked the once a week day service help from now till spring. Without knowing that a strange, unseasonable warming up would happen. A week ago there was snow. Now there isn't. Because in winter Okaasan needs to go out at least once during the week when DS and I are away working. She needs to get out of the house and have some mental/physical stimulation.

But of course today: she is doing that fine. She doesn't know this is an unusual day, doesn't know anything about day service ordering systems, our schedules yadda yadda...her own inabilities.

I see her off down the street. She is back soon with the same oden food as yesterday.

A few hours later I am prepping dinner.

She comes into the kitchen and starts in again on "WHY day care?????" etc etc etc. Her voice angry and rising. There is no reasoning with her. We go round in circles. She believes she does everything for herself.....she is unaware of the long, winter weeks when she just sits by the Tv with nobody, no conversation, no exercise....

I can't have Sunday dinner with her like this. Just can't.

I make an excuse about being tired. Which is true. Take food upstairs secretly and eat alone. Serve her dinner. Leave her to stew.

Dear Son tried talking to her after dinner on the phone. He is back next week. They will talk again.

With absolute bad timing the day service woman is coming TWICE this week - Wednesday as scheduled and tomorrow - because I am out from 9 am until late night, with two end of year work parties. I need the helper to feed Okaasan and feed the cats.

But of course there is a street with no snow and Okaasan will think - and will be right - that she can go out alone. Won't need the help that is coming. Will certainly get angry again...

Sorry. BOring blog. Just feel caught in a web of it all.

I wish it would snow so she is housebound and we can argue about the need for the helper's help.

Tomorrow I think Okaasan may send the woman away. I will try to leave the woman a note about Walking NOT Taxi with Okaasan....and hope that at least she accepts the helper escorting her down the road.

hate having to argue and negotiate all of this with her.

Can't cancel the booking - tomorrow is necessary as I am out till late. Wednesday is the scheduled visit.

The weather news says winter will return on Thursday.

Please..

Some days...

...just mean.
Me.

Can't be great all the time.
Tuesday night? I was pretty mean to Okaasan. Felt guilty afterwards. But also just let myself do it.
Sometimes carers are tired and don't give a ****.

End of a long day. Wanted to eat food and watch Tv and go to bed.
Had to paint on the friendly manner and smile for a bit at dinner. Failed.

I made the mistake (for both of us) of telling Okaasan that daycare helper was coming on Wednesday. She got all grumpy about "I don't need that". I got all grumpy about "Yes, you do, otherwise you will sit in front of that TV from Monday to Friday. It's helping you and us"...and it went downhill from there....

Next I criticized how she was gulping down the alcohol I'd give her...just a bit...but  drunk in under 1 minute.
She told me: "I've been drinking alcohol since I was a child. Are you really telling me how to drink?"
And I did.

So. Rest of dinner in silence and I left the table soon after.

Not great caring.
Sometimes all the resentment and meanness comes out.

And so.
Wednesday Okaasan went with the helper on this winter's first taxi ride to the supermarket etc. All apparently well.

I am just spiraling on in the usual end of year chaos. Just about keeping it all on track. 
I bought three Xmas presents. Ate one of them myself.
Haven't sent any cards. Have bought the Japanese New Year card bases, but haven't designed on written them yet. I have four work parties in the next 8 days, one teachers' party and a friend's dinner.
Kind of feel not in control much.

I want to escape it all and go skiing. 

Winter weekend

Our first  winter weekend of the season together.

On Saturday I got her in - and out safely - of the bath. This time I walked right into the washing area and chatted to her about the water temperature - so that both of us get comfortable with me being there.
We've asked the Day Care people for information about making the bath safer. It is a long, deep tub and kind of swallows up little OKaasan.

Then gave her lunch, while I cleared snow and went to the gym.

Mid afternoon I took her downtown in the car. I had to walk around and locate a Christmas party venue for a class. Pre-Christmas madness was filling all the parking spaces, but eventually I found one a little far from Okaasan's favorite coffee shop.
But it made a good, underground walk for her - I installed her at a table in the coffee shop with a coffee, her favorite cake and a magazine I rushed out to buy. Left her there happily for 45 mins.
When I came back she was perfectly happy. I sat down. Drank a bit of water. Then brightly suggested we moved on "because those people are waiting for a seat!" - and she came willingly.
Walked her back to the car and home.
She followed me quite happily, didn't seem to want to go any further than I suggested. All the dashing Christmas shoppers made the experience quite a challenge I think. Probably enough.
While I went out to a party I left her with one of her favorite sushi box sets.

Sunday served her lunch, left her for the afternoon and then ate dinner with her.

All successful.

I used to stress a lot about spending time alone with Okaasan. Worried about my Japanese ability and how to entertain her. Now, more relaxed. Comments about the weather, rich Chinese tourists, snow, cats....it all drifts around.

Tomorrow she will get her first Day Service visit for this winter.
A student described to me how her mother goes five days a week to day service: lots of singing and handicrafts and laughter.
Makes me sad still that Okaasan doesn't get any of that. But her and her son's choice. If she were mother I would be hunting for a day service place that she liked and making sure she went along. But DS doesn't push and Okaasan firmly refused to go to the center she was attending 2 years ago (after a staff member brought her baby into the kitchen)...so that option - for now- is off the table.

Talking of table....in Japan a kotatsu is a heated, low table with a blanket hanging down on four sides. Okaasan lives under one.

Last year we gave her a new kotatsu, because her old one seemed to have irregular heat. She was complaining of being cold.
But I kept the table equipment in the garden shed.

I've just brought it out and set it up. For the cats.

Chichi is in catty heaven!

Making a memory :-)

"I went to Kawagoe! I was born there!" Okaasan excitedly told the Day Care Manager when he came last week.

She remembered our trip 3 weeks ago.

Anyone who is living with dementia knows how special that is. A recent, new experience held on in the mind and shared with someone. Very special.

We are so happy. Makes it all worthwhile. Well, almost...maybe not that last-minute desperate packing scene....or the toilet floor saga.

No, seriously - it was very good. The manager man was surprised, and DS too. It means that the experience was good for her and she has kept that as a good memory.

So, the care management meeting for this winter. I wasn't there: but they have agreed to do the same as last year. Every Wednesday to come to the house for 90 minutes, take Okaasan out by taxi to the local big store, walk with her, shop with her and come home and make sure she has dinner. And feed our cats for me.....also made a booking for are on a night when I am out at a work party.
Okaasan's care needing condition is the same level as before. Her dementia level is a little more advanced, but not so much. A holding pattern all round.

Winter has begun.
DS left yesterday for his first 10 days of work at a ski resort far away.

I have control of the TV remote.
I have the cats.
I have ALL the planning/shopping/cooking/serving/washing up/cleaning duties in this home.

I have Okaasan care - bath times/exercise/clothes/room cleaning/money/chat duties.

I have wine.
Let it all begin for another winter.

Bath.....

NOT back to normal, then.

Dear Son had a scare the other day when Okaasan seemed to be in the bath for a long, long time.

Finally, after many "I'm ok, thankyou" through the bathroom door he got worried, and opened the door and went in. Okaasan was floating face-up like Ophelia - with one hand barely gripping the side of the bath. Barely talking.
He hauled her out and onto a chair.
Then she fainted for a few seconds, he brought her round with water and chat - and 10 minutes later she was fine again.

But scary.

The day care people come today for a meeting, we'll get their advice about adapting the bath to make it safer.

Many elderly people have problems getting out of the bath of course. But the dementia aspect makes it more dangerous, as Okaasan has no sense of HOW long she is in the bath for and responds with "I'm fine!" to questions....when obviously not fine.

Okaasan's days of privacy in the bathroom are numbered. We need to be in the room with her much more and monitor her bathing.

Back to reassuring routines

First week back after all that excitement.
Okaasan seems fine. 
I did worry that the whole experience would push her into a new level of confusion, and certainly while we were on the trip we saw lots of confusion - now we are back home all appears to have reverted back.

After we returned there were 3 more days of autumn, time for me to hastily prepare the garden and put up Christmas lights over the front door - and then BOOM! A record breaking 42 cm of snow fell in 24 hours and turned everything into winter.
So Okaasan can't go out walking. The day service people are coming for a chat tomorrow about what kind of help we require this winter. At least once a week take her to the supermarket, dinner and chat would help me get thru the winter again. If they offer more....even though we'd have to pay for more....would be nice.

Okaasan mixes up objects at home a lot now. Cups and bowls and mugs. What to use for what food/drink. I saw her poking an apple with some scissors the other day.....

But so the warm feelings after the trip to hometown continue I have printed up a big picture of the family group. Put it in a frame and given it to her. Plus a small album booklet of pictures.

"Did we all go here?" she asked me. Probably not sure WHEN we did, but the photograph is proof that sometime we did go and meet those people.

And so: winter Okaasaan and Me. Always fun. While Dear Son is away being a ski instructor for weeks on end, Okaasan and me and home a deux for endless dinners and wartime memory chats.
ho ho ho.

Watch this space.

Return to...where?????

There we are - back in Kawagoe, back with the family, back with the memories.

We did it! She did it. I did it. He did it. Success.

Along the way....oh.....ho ho ho.....

First of all: she enjoyed it. She got noticeably brighter when we arrived in Kawagoe. Lots of old chat came out. With the family she didn't know who they were at first ("Hello? I think we met recently?", but then understood and smiled and laughed and chatted.....and DOESN'T she look great? So young and beautiful!

It was a good thing to do. Worth all the work...all the work....for her and for her family members. One of Okaasan's brothers is not so well at all, and this may be the last chance for them to meet. 

But.

Oh, but.

You can imagine...the GETTING there was one whole HUGE puzzlement for Okaasan. Out of her familiar surroundings she was all at sea in confusion of place and time and reason. She depended on us a lot. Her dementia leaves her very vulnerable to confusion.

At 6 am on departure day she had no idea we were going anywhere. No idea there was a letter. Wanted to know WHY we were going. Wasn't at all interested. It was a major effort to get her up off the carpet and dressed.

Mind you: she then happily told everyone she met along the way: "I love going places. When they invite me to Tokyo I jump right up and say "Yes!""....yeaaaah. Right. Oyomesan groaning in the background...

The packing was a nightmare. Couldn't do it. All she could do - after a lot of pushing from me - was to put hand towels and handkerchiefs in a handbag. I packed her suitcase out of sight...and unpacked the towels and handkerchiefs....then unpacked and packed her in Yokohama and Kawagoe hotels.

And place: "Where is this?" was a constant, constant refrain. Every few minutes. At the airport, on the bus, in the hotels, in the streets, on the trains, in the hotel elevators, in the toilets...

Funniest was: "Is this my room?"...standing in the hotel bathroom? "Is this where I/we live?"

"Is this Yokohama? Is this Sapporo? THIS is Kawagoe?"

Return to Kawagoe.

And toilets: I KNOW I have been in and out of every single public toilet in Yokohama station area and then between there and Kawagoe, all over that town, and back to the airport. Know it. 

Actually maybe our trip was a tour of toilets.

We did well finding toilets and averting accidents - almost...in the final trip back to Tokyo airport I let Okaasan go into toilets alone and she chose the Japanese style squat cubical...minutes went by and she didn't come back...then started calling my name and banging on the door!

She had fallen down on the toilet floor, with her clothing round her knees...and couldn't stand up. Her body was wedged against the door - so I had to force my way into the cubical to haul her up off the floor....and get her dressed again and safely out.

While we were at the Elton John concert - 5 minutes away from the hotel - she was dozing by the TV in the room. But locked the door from the inside...had to telephone and bang on the door constantly to get her awake etc But she was safe.

And Kawagoe. The three of us walked and bussed around the old historic town, where little Kazuko had played long ago. She and I went inside the old house where a shogun was born, saw treasures and autumn leaves. She had great delight in showing off all the history and telling EVERYONE: I was born in Kawagoe!!!

We even found a town history exhibition with a friendly curator. He was obviously very interested in Okaasan and what she must know, but his questions confused her and she kept repeating: my friend lived in that shop, I don't know her name, where did I live? I don't know, I was born here!, my friend lived there, I played there, we went to the doctor's office in a rickshaw...

Frustrating for the curator. A child of course doesn't know the names of places and people. And now Okaasan has child-like memories. Lacking the facts.

"My friend lived here, we played together!"

Funny which experiences or information stick.

As we stood in the hotel foyer saying goodbye to family members I commented how well T-looked: "Was he here today? Did I meet him?"

But next morning: "H-san didn't come yesterday, because one of her husband's relatives is very sick."

So she forgot the brother who she sat next to for two hours. But remembered the sister who didn't come...and why.

And so. It is done. My good deed. I promised myself that she should go two years ago when I visited her hometown. And we managed to take her.

Success.

Today she is tired but seems fine. Chatted away. I will make up these photographs into prints and give them to her to aid her memory of the trip.

It was a huge amount of work - but the results for her and her family were good.

Now. Winter.

We got THIS far!

Yes!

Panic packing x2

I'm packing.
Okaasan is packing.

And the taxi is coming in 45...30....20 minutes.

I am packing her suitcase surreptitiously in the kitchen.
She is packing a shopping bag with endless hand towels and scarves.

I failed to Stealth Pack at 10 pm and 5 am...because she was awake and I couldn't get into her room.

So.

We are packing.

6 am conversation:

"We are going to Tokyo? When? I didn't know? Why? What letter? When? Today. Why? I didn't know!".

Pray for Oyomesan.

Please.

Stealth packing...

I'm waiting - Ninja like - to pack Okaasan's suitcase for our trip starting at 7.30 am.

She's failed to pack. :-(

This morning we talked about weather and clothes again.

I came home from work at 3.30 pm.
No sign of packing.

I got a bath running and got Okaasan to have a bath, so she is fairly presentable for the family...and other airplane passengers.

While she was in the bath I brought the suitcase out and put it on the carpet near her sitting area.

After bath and hair dry and relaxing TV...I started trying...nudging...reminding....

5 pm...6 pm...she is looking at The Letter and looking at the TV. Doing nothing.
I offer to help, and start picking up some of her clothes to put near the suitcase. It gets her up and active...but then she gets fixated on a stain on the trousers she must have worn yesterday. Angrily refuses my suggestion of a little dabbed water and fusses on.

At 7 pm we have dinner and I talk up the excitements of Yokohama and Kawagoe again. What fun we are going to have tomorrow! You can show me your hometown because you know it so well!

Now it is 8.30 pm.
She has turned off the main light in her room and is stretched out on the carpet, under the heated table...with her face to the Tv. As usual.

3 pairs of pants are nestling forlornly in the suitcase.

I realise now I should have done the packing while she was in the bath. And put the suitcase in the hallway out of sight. Should have done it for her this afternoon.

So. I am waiting till I can hear her heavy, sleepy breathing (which is when we usually turn down/off the TV or lights) - and then I will sneak into her room and pack her stuff!!!!

This IS gonna be a good trip, gonna be...gonna be....

"This here letter..."

Okaasan is getting with the program.
Maybe.

Yesterday morning she called me into her room and waved The Letter at me - asked me about it again, talked about clothes and weather. Seemed a little interested in going to her beloved hometown...

Yesterday afternoon I got back to find her sitting half dressed, with the letter in her hands:
"This. Are we going now? Today?"

"No, no...in 2 days time.  Today is the 16th, look at your desk calendar. Look it says "18th" on the letter here and here, and here on your calendar it is marked with a red circle on the 18th. You can relax. The day after tomorrow!".

Hmm......maybe good. 
She didn't start moving clothes around yet. 
I've done as much washing of stuff as necessary. I've put a small suitcase in her side room, and taken the cat hairs off it.

Wait and see.

Last night I tricked two lovely relaxed, happy felines into horrible carry boxes and transported them to Kitty Hell in the vets office for 5 whole nights. A house without a cat is not a home.

One more day to go till blast off....packing is coming.

I STILL have a suspicion Okaasan is going to pull a sickie and say she can't go. Like last year when I bought the concert ticket for her and that evening she claimed to be sick and unable to go. 
We'll all waste money if she doesn't go: flight ticket/hotels for 3 people, family dinner at a hotel. I am not 100% sure I will be on a bus to the airport with her 24 hours from now...

We have lift off. (muted)

You know those moments before you tell somebody something...

Shall I do it now?
Or now?
What about now?
While they are still eating?
When they have finished that drink?
When they come back from the toilet?

When shall I tell them??????

Like the moment you break up with a lover, tell someone you are sick, tell someone you are angry with them...

I told Okaasan at 7.25 pm. After the haircut, after she'd walked home by herself, after a nice a deux dinner, after some shared beer....

"There was a special reason you had a nice haircut and perm today! Dear Son has a lovely surprise for you! Look! Here is his letter!!!"

And I gave it to her.

She read it. I waffled on brightly about how nice it will be to visit Kawagoe etc, how exciting, how nice to see her brother and his wife etc..

Her response? Muted. Not negative (thank goodness), but strangely muted. I might have suggested opening the window for some fresh air.....

We talked about it for a while.  Well, I talked and she responded...mutely.

Yes, Kawagoe is where you were born - it isn't where your house is.
Brother's wife's name??? No idea
Yokohama - maybe Chinese food?
Wednesday morning we are going to the airport.
Look I circled the days on the kitchen calendar!

She read the letter several times. She did understand. But her reaction was massively muted.

I guess she needs a long time to process this new information and think about what it means.
There was a news report recently about how changes in sense of humor can signal dementia, with inappropriate laughter at bad news or events etc. I think too many emotional responses are off-balance: lack of empathy "Oh Paris? many people died? Oh, yes" to this muted response to news about a trip to see hometown and family.

After dinner I came upstairs to watch Richard Gere movies and a program about person-centered care for dementia sufferers, and Okaasan sat in front of yet another ice skate program (Japanese TV is full of them) and read her letter.
She kept ON reading the letter...when I was in the bathroom before sleeping I could see her still reading the letter.

So. We'll see how she feels about this trip as today plays out. I have work, but am home to catch cats for pet hell late afternoon, and then home again after an evening class.

Will she get in a panic about the clothes required for the trip? Or get annoyed that a visit to her house isn't included?

Wait and see. :-)

6 days and counting....

He's gone.
I've got the letter. Three copies in case she loses it.
I've had my hair cut.
The cats are booked in for the pet hotel.

Okaasan doesn't know what delights are ahead for her.

I'll get her to have a bath today or tomorrow.
I'll try and get a few more clothes out of her room and cleaned.
Take her to the hair salon on Sunday afternoon.

Meanwhile my brain is going into overdrive about what MIGHT happen...the other night I had a dream where I was in the kitchen and DS was leaving at the front door while Okaasan had washed ALL my clothes and her own clothes and laid them out on the kitchen floor to dry...the bathroom was full of wet clothes, the sink area...and I had to shower and rush to work.
Okaasan-in-the-dream was telling me that this was the correct way to dry clothes and wouldn't let me pick anything up....

I also have a worry that she will actually refuse to go on the trip at all: because "I am sick"/ "I don't want to meet people"/ "I have nothing to wear".
With pop concert tickets, flights and hotels booked I will have to leave her. Get dayservice to come in and care for her and leave without her...
Actually that would be a better trip....

So. You can see I am in a very relaxed mood pre-trip.

Anyway.
Sunday evening at dinner. Okaasan will learn what exciting things are about to happen.
May the force be with me.

:-)

Countdown to THE trip

Two weeks and counting.
Actually in 2 weeks it will all be over.
The trip to Okaasan's hometown and family.

She, of course, doesn't know anything about that. We hope. Think.
Fairly easy. We usually don't talk about DS's annual trip to party with his friends until the day he goes: "to a national ski teachers' meeting in Tokyo". Okaasan has accepted that lie and his absence quite happily for a couple of years.

This time his trip will turn into the Happy Family Trip as Okaasan and I fly to Tokyo a week later to join DS for a) he and I going to a concert and b) Okaasan going back to her roots and family.

But we aren't telling her until it is necessary, because she and we (mainly I) don't need to stress of her getting in a tizzy about the trip. 3 days notice is enough.

So. We make plans while Okaasan is oblivious.
He bought the souvenirs to send ahead by delivery company to all the family members we might meet, or who might know we are in town. Japanese custom - LOTS of gift giving. 
I'm all primed with the air ticket details.
My student who is a taxi driver is all primed with pick up information to get Okaasan and I to the airport bus stand, and then 3 days later pick us all up at the airport.
DS has the tickets for Elton John concert and all the hotel details.
Okaasan's sister in law is organizing the hotel and the family dinner.
DS goes off to meet his friends in the Tokyo area next week, leaving Okaasan and me as a happy twosome for six days.

In the final countdown:
I'm getting some of Okaasan's clothes washed/cleaned ahead of time so she can panic over clean clothes about what she needs for a two night trip
I'm booked in for a hair cut.
I've booked HER in for a haircut next Sunday afternoon - which will give me a few hours to get her clothes in final order.

And on Sunday evening next week I will tell her that DS has a surprise.
I will hand her a letter from DS (so she can keep all the information straight) - and announce:
"Hey! You and I are going to Tokyo in 3 days time!! You need to put a few clothes in a bag."

It won't be that simple......
His letter will tell her that
* The souvenirs have all been bought and sent
* You don't need new clothes for a simple family dinner
* You only need clothes for 3 days

And we'll try to leave any mention of Okaasan's old house (where useless brother lives) until....we can think of a good enough excuse for why this trip isn't going THERE.

Oh, about useless brother.
I casually mentioned to DS about who might come to the family dinner. Brother and his wife, a sister? A sister in law? The useless son/brother....

"Err...I didn't tell him. He has diabetes, he has XXX, it's not good for him to eat a lot of food..."

What the Fuck???

Men can be so, so dense sometimes.

Of COURSE useless brother should be invited! This is probably his last chance to meet his mother before she dies! He never comes here. He hardly phones. She probably won't be physically or mentally able to do and enjoy this kind of trip in future.
Whatever the man's failings as a son...err...adult human being...he IS her son and for his sake and her sake they should meet if at all possible. A child and mother relationship is important. Never mind coming to the funeral when she dies (as they all will I am sure) - NOW is the time to come and spend a few hours with the living person.

I couldn't believe the man-of-my-dreams could be quite so highhanded, stupid and dense. And I told him so.


Anyway, at the moment nobody has been able to contact UB - so maybe he won't come. Which will be a real shame.

Hey ho. Strange family.

Okaasan drifts along, sleeping/eating/the occasional walk/lots of TV.

We notice more and more little strange things creeping into almost every day.

* She is rearranging the toilet mat again. Sometimes level with the toilet,sometimes with the door frame. Sometimes at an angle touching both! Obviously it bothers her - that this mat is in the wrong place....but what is "wrong" changes daily.

* Had a saga with a lost kitchen knife, I asked Okaasan if she had it in her room ( because she peels apples while watching TV), but she was amazed that a knife may have somehow migrated anywhere near her...and kept offering me the TV remote instead...then came to the kitchen and tried to show me how to cut chestnuts with a carving knife....
But surprisingly - 20 minutes after I'd got back from the local store with a new knife - Okaasan had remembered long enough what I had been hunting for and found it under all her stuff.

* Oh...and trash.
She goes out often with scrunched up newspapers in her handbag....containing trash to throw away. One day it was toe nail clippings,another day a rotting shrimp from the lunchtime box a few days before.
She has two trash boxes in her room - which she uses. She also (occasionally) puts things in the kitchen trash boxes.

Not sure why she thinks it is a good idea to take trash out of the house in her handbag :-)

And so.
She is getting out for a walk sometimes.
Not far. 
Hope she will HAVE the energy for a whole airport/Yokohama hotel/trains/Kawagoe and family thing.

Hope I have the energy for it too......

Winter afternoons

First snow here last weekend!
Felt a little early to have the swirling white stuff outside while we are still enjoying fall colors. 
My God, I'm English and I just wrote "fall", not "autumn". Have obviously been in Japan too long.

Okaasan isn't dealing with the changing season well.
Many days she fails to get out for a walk in good weather...leaving it till 5 or 5.30 pm, usually when one of us comes home bustling noisily into the kitchen - THEN she decides to go out for a walk.
Such a waste of good, sunny weather. By 5 pm here in October it's dark and cold. A few times I've tried telephoning her mid-afternoon and reminding her to go out. It sometimes works. But, if the TV catches her attention again then she settles down to slump and doze.

So we have an 85 year old tottering around the local streets at dusk as people are hurrying home. Not downtown, she only goes to the local supermarket. Buys yet another magazine to go with the identical one at home (or identical two!), and then home she comes.

But at least she is getting out and walking a few days a week. As the weather gets worse those chances get less and our responsibility to take her somewhere for a walk increases.

Only new thing we've noticed about her recently: green tea making. She is getting confused about that very, very familiar task. Something she has done all her life, probably as the girl child in her father's home business, as a young working office woman, as a wife, as a housewife. 70 years of tea making.
First put a few shakes of tea powder in the cup, then add hot, but not boiling water and whisk or stir it.

That order of doing things is getting mixed up.
The other night she poured hot water in a tea cup. Then picked up the teabox, took a spoonful...and put it in the water tumbler. Then started to pour more hot water into the glass. :-(

Ahh!!! Okaasan...no no...not a good idea! The glass might break, it will be hot for you to pick up...um...no.....

We rescued the situation and helped her get tea powder and water in the same place.

Other days she puts the water in first. Then the powder, so of course it doesn't dissolve, and the expensive tea ($40 a box) floats in balls round and round...then she drinks a bit of the hot water and leaves it all on the table....

So. A common action she has done all her life...losing the ability little by little.

Next week is November and our big trip to Okaasan's hometown is approaching.
About a week before I will take some of her better clothes for dry cleaning, and get her to the hair salon. And then tell her we are going....

And then the adventure will begin.

Um...

Sorry. 
Almost forgot I HAD a blog here....bad blogger.

Life ongoing. No big (interesting) dramas. Just the weeks are rolling by and suddenly I realize I've forgotten my oldest friend's birthday this year AND that I haven't blogged since 3 weeks ago.

Okaasan all good.
Days of strange actions and comments, then days of clarity and surprising awareness.

Take the grapes. Recently we've had a lot of grapes on the kitchen table.

I was surprised that Okaasan asked DS about how they could be "seedless" grapes as a fruit of a plant. It is good cos it shows she is capable of that kind of interest and reasoning.

Two days later she peered across at my plate: "don't you eat the seeds? Look, I ate the seeds!"????????????
Japanese people may be the only grape-eaters who in the 21st century peel their grapes. I'm pretty sure nobody in Japan eats the seeds though :-)
And she had eaten the seeds, was very curious why I hadn't done the same thing...

Another day: do I eat the skin of the grapes? (Repeated 3 times in about 3 minutes)

Anyway. She loves the grapes and stuffs them down. I hide some of them so they won't all disappear in one day.

The food she loves she will eat and eat, and eat. One day I hope to be the same with chocolate and hope some carer will say: "ahh well, she IS 85 years old...let's let her eat chocolate all day!"

Apart from that?
Family drive to a supermarket complex and a soba noodle lunch in the food court. Okaasan ate her way thru a huge bowl of stuff. She was more passive in the shopping afterwards. Just followed us round and round the shop - only chose a pack of expensive dry seaweed - and didn't notice at all when I sneaked it OUT of the cart a few minutes later and back on the shelf.

I cleaned her room another time - major throw out of rubbish. Found the nail clippers under a mountain. Her nails are long, she HAS clippers...but is really getting beyond noticing a personal care thing and taking steps to address it...hair brushing, nail clipping, tooth brushing.

One day the newspaper delivery man came and Okaasan wanted to cancel the newspaper delivery from December. Fine, of course. Until she  forgets this decision and wonders why her delivery isn't coming......maybe we could just give her old newspapers to read...or would she notice the date on the top of the page?

Anyway. Still here. Not very interesting or articulate - THIS writer is much more so! Reader L recommended this story by a person who lived with a man who has dementia. SO many things in this story resonated with me. It's a great piece. Enjoy :-)

Hope is the Enemy

VERY timely...

November family trip is taking shape: we'll stay in a hotel near Okaasan's brother's home. Sadly not the hotel which is just 5 minutes walk away, but still near enough to explore the familiar areas easily. 
Brother's wife is taking on all the arrangements: a family get together dinner at a local restaurant etc.

And talk about this trip being timely! Apparently brother himself is starting to lose track of things/life/conversations/memories - so a VERY good time to unite him and his sister while they can both still understand and enjoy it. Another sister and a sister-in-law may come too.
It'll be fun!
Maybe. Have to keep control of the alcohol....

And to finish here today...just off to do a quick clean up of Okasan's room while she is in the bath...
Read this on the Which Me Am I Today? blog - about perspectives, trying to look at "carers" from the perspective of a person with dementia....
I think I am guilty on all counts for how I view Okaasan. But it is HARD not to when you are involved in the very personal care/management of another person.
The blog writer is a smart, funny British woman who campaigns for greater knowledge and research into dementia. I love what she writes, but I think too that it is all too easy for someone who is still SO able in her world to forget that there are many millions of people who are beyond her level of ability.
And carers: if you pick thru the hidden away dirty underwear of someone it's hard to have a "respect" for them. They are the task you have to do, the necessary job in your already busy day.
But anyway - I read down this guest writer's checklist of "challenging behaviors" by "carers" and thought: Yup, yup, yup.....must TRY harder.

How's your life? Interview....

A tale of two lives at the kitchen table this morning: Okaasan's view of her life...and then our view of her life.
And the city office interviewer trying to make sense of it frantically on her clip board.

After the recent mental health interview, this was the final Public Care Status interview, which determines what public assistance we can get in the next 2 years.

Okaasan's Daily Life...by Okaasan:

I go walking almost every day. I go to Odori (downtown) by subway almost every day. I meet my friend. Go shopping.
Yes - I have a bath, brush my teeth, brush my hair. Of COURSE!
Food? Um - what time? Um. Cooking? Um. Microwave? Um.
How many people live here? Um?
What season is it now? Um...is there a calendar? Um...autumn? The day? Um.
How old am I? Um...around 80?
What time do I go to bed? Wake up? Um....
Do I sleep on a futon or a bed? Um.....
Yes - I cut my nails! Of COURSE!
Doctors? Hospitals? Health supplements? NO!!!
Can I stand on one leg? Can I get up and down from the carpet? YES!

Okaasan's Daily Life...by Dear Son and Moi:

Walking every day, if the weather is good.
Downtown...once a month in the past year or so.
Sometimes confusions about money/tickets/possessions.
Doesn't get lost.
Doesn't bring back other people's possessions.

Has a bath/cuts nails if we direct her to do it. Can do them herself.

Food - can feed herself (messily). We do all the shopping and cooking. Lunch box deliveries and food left out for her to eat.
Microwave ok. Cooker - rarely uses and burns pans when she does.

Money control - we do it for her.

Goes to sleep and gets up herself. Sometimes we get her up in the morning. Lots of daytime sleeping.

Endless repeat conversations. Random - unconnected topics common.
Mixing up of childhood and adult stories and places.

Thinking long ago life and people is happening now? No...not really.

Can't follow complex explanations - we leave written messages about plans.

Awareness of seasons/weather - patchy. Clothes choices sometimes not suitable.
Night time wandering? Eating? No - not that we know!

There was the Remember 3 Things test: Apple/Car/Train.
I scored 2 and a half. WAS the third one train? Okaasan was a complete blank. She couldn't name any of the things. Even with a hint.

The city office staff was obviously impressed by Okaasan's physical ability: balancing on one leg, getting up and down from chairs and the carpet, turning over, stretching out her arms etc. All very good for 85 years old.
She IS good.
Many of the questions made me realize that so many elderly people have a whole range of physical limitations/weaknesses. Okaasan really doesn't.

But: the mental ability is also clearly not so great. The silences, or hesitant answers to questions about self and routine showed that.

I think it is sad: Okaasan is/was a physically healthy person. She used to walk and do hula dance. Socialize with people. Look after herself. Eat sparingly and well. Travel. Study. Learn. In her late 60s and 70s she was doing all the things you are supposed to do.

But still. In her late 70s this thing called dementia crept up. By 77 she wasn't cooking for herself, she wasn't managing money very well, she wasn't cleaning. And then her son took the decision to look after her.
Physical activity is Dementia 101. But doing it doesn't protect you. By the age of 77 and 78 Okaasan was on the slippery slope.

The interviewer's question about believing past events are in the present was interesting. She went on and on explaining what she meant by this: and Dear Son and I couldn't think of anything that demonstrates that with Okaasan.
She doesn't mistake delivery men for her father, or think the Sapporo supermarket is a Kawagoe shop. Nothing like that.Yet....
Although....the recent "there are four people living here" answer to the Census taker maybe shows confusion about her current living and the past as a wife and mother in Saitama.

All in all a good interview. It was an honest laying out of Okaasan's mental/physical status at the end of 2015.

The interviewer was a totally nice, middle aged woman. Professional and friendly. But - I DO wonder why they do the interview with the family members right in front of the client. We sat there dissing what Okaasan had just said. No - she can't do that. Nor that. Not that. No - she is wrong. It's hardly a warm, positive feeling to hear your family disagree with you in front of a stranger. There was NO suggestion that we should talk privately in our part of the interview.
Bad I think. But then if we did - would Okaasan be suspicious about us talking to someone without her hearing?

After the woman left and the three of us were in the kitchen I chatted brightly about: what a nice woman! Yes, she was surprised at how flexible your legs are!

Okaasan for her part tried to explain away the not going downtown: I don't go recently? Really? I don't have any money? I don't have a card? The weather is bad?

And then I came to work. Dear Son started cooking curry. 
And Okaasan retreated with a cup of tea back to the TV and safety.

We wait now for the Day Care manager to arrange this winter's care. Once a week trip by taxi to the supermarket would be good.

.........

Now: Tell me - what were those 3 things I asked you to remember earlier?
Yes?

Can you tell me?

How many people in your family?

This is one of those Japanese school book questions that makes English speakers wince.

Native speaker teachers spend a few years unteaching this one ( and a lot more)...sometimes it gets mangled into: "How many families do you have?" which conjures up images of sneaky men having dinner at two homes and shuttling between multiple wives.
Anyway. The family survey question is being asked all over Japan at the moment.

The 2015 National Census is taking place. Respectable older men and women with official name cards on straps round their necks come a-knocking and give each household census forms that can be completed on paper or directing you to online submission.

Okaasan answered the door the other day to our local census taker.
How many people in the household?
Four? I think....

Luckily the man realized she was pretty confused and he came back again in the evening, when he got me instead.
How many people in the household?
Three. One man and two women. And two, super cute cats. And the occasional not so dead rat.

I expect the population figures for Japan are WAY off in fact, if you multiply Okaasan's confused answer across the country...thousand of confused elderly misreporting.

Okaasan was giving the answer she would have given 40 years ago as a housewife: me, husband and two sons.
The husband is long dead. One son lives in another place. And the best son lives with her and a wonderful daughter-in-law.

Three people.
That's us.

Plus rat...in the bath....it escaped a cat...lived for two days under the second floor fridge...and then somehow fell into the first floor bath. Where I found it late afternoon. Brushed it gently into a box and carried it to freedom.
So. 3 humans. 2 cats. And a rat in this household this week....

Slowly downhill..

That's Okaasan's mental condition according to the mental health clinic.

4 years ago she scored a 14 on the Hasegawa Dementia Test scale (out of a maximum of 30?),  2 years ago she was a 12...and this week she scored an 8.
I think a score of 3-7 is considered Severe Dementia?
Okaasan isn't severe at all, but when she becomes stressed thru fear/anger/sickness we suddenly see the wildly emotional, difficult side of her. So we know it's there.

I guess this means we could be entering a  new stage in the next year or two....

But for now all pretty ok.

"Gradual decline, maybe a little slower than many people - it's good she is still taking a bath on her own, toileting and feeding. And very good she is going for regular walks alone" basically the doctor's report.
This will now be passed on to the city welfare office and when we apply for day care visits and support this winter the test points and Okaasan's care level determines how much care we can request and how much we pay.

Okaasan followed Dear Son happily enough to the clinic, a relief after the fights in the past about any kind of medical check up. She tried to clean her teeth three times before going and wasn't 100% why they were there, or even if they'd already met the doctor 5 minutes after the consultation - but she went along with it all.

After the clinic DS took her out for a walk to a ramen restaurant for a big lunch.

Four hours later she'd forgotten any of that and claimed: "I haven't been out at all today, I'm going for a walk..."

And in other news.
I had coffee with a friend whose mother is far further along in a kind of Alzheimer's. The family have moved that lady to a care home in Tokyo to be near other relatives.
On the flight down to Tokyo my friend's mother kept forgetting that they were IN an airplane. Everytime the plane shook or dipped a little she looked surprised..."why is the table moving???".

Thinking ahead to my trip with Okaasan in November. I think she won't be like that. She'll enjoy an airplane trip I think. Maybe think we are going to New York?? 
Fun fun fun.

The Roadtrip a-COMING!

Yup.
Okaasan and Me will hit the road this November.
Playing the double act, with support from Dear Son and assorted family members in Yokohama, Kawagoe and an airport near you.
Shopping! Travelling! Chatting! Toilet Breaks! Lost Things! Packing! Panicking! More Shopping! Eating! Controlling the Alcohol Intake!

Oh my God. It's gonna be hard.

But DS contacted Okaasan's younger brother and his wife and they wildly offered to let the three of us stay in their home, or in a nearby hotel. They'll organize a wonderful family dinner. It'll all be splendid. Okaasan will walk the streets of home again. Kawagoe. The city of her birth. All those glorious memories.

But first.

I have to get her a hair cut.
Prepare her clothes.
Tell her we are going.
Help her...pack. And pack again. And again.
Get her into a bath.
Get her to the airport.
Steer her past lots and lots and lots of airport shops.
Fly with her to Tokyo.
Steer her past more shops....and onto trains.
Get her to the first night hotel stay in Yokohama.

Then DS will meet us and the three of us will settle into the hotel. Have an early dinner. And then Okaasan will snooze in front of the TV in a nice hotel bedroom...and we will sneak away to the Elton John concert for a few hours of escape.
Praying that Okaasan doesn't escape the hotel.....

I am already trying to imagine each stage and what might happen.
It doesn't happen until November.
But I can rehearse it all in my mind till then.
All the variations of what might happen....
Okaasan, hopefully, won't know anything about it till a few days before the trip.

Meanwhile:

* Having a hard week at the moment. DS has his regular customer for the bike taxi. But it isn't just taxi using, he acts as a kind of personal escort and shopping helper to a sight-impaired lady. Pretty demanding of his time and energy. He is working every evening and doesn't come home till gone 10 pm. THEN he wants to unwind with a beer and Tv...so I am awake late.
And at 5 am the cats are demanding breakfast. I feel I am operating on failing batteries.
It's like the weeks in winter when he is gone.

I had dinner tonight with Okaasan. But she's been a bit abandoned this week. Lots of lunch box deliveries and food left out for her on the kitchen table. Of course she doesn't count the days of this because she is just going from moment to moment - but at some level the lack of human contact and conversation (such as it is from my tired brain) must impact her mood or feeling.
Tonight her usual story of the flower business man who gave her a high quality hydrangea bush when she was a 50-something housewife somehow all got mixed into "my house when I was a child in the war, but of course we didn't have flowers in the wartime, so I don't know what happened to the hydrangea..."
I didn't correct her. Just agreed that flowers didn't survive wars.

* And tomorrow DS is taking her for her mental health check up and dementia assessment at the clinic. Every 2 years apparently. This is so we can reapply for day care services this winter - the day care worker who will come once a week and take Okaasan shopping in a taxi etc
So, that is what DS is doing with Okaasan tomorrow.
That Name 5 Things test, Draw a Clock etc. Dear Son will probably fail the test himself thru sheer exhaustion. Then I can get public assistance for both of them and never have to cook another tofu dish again.

It will be interesting to see what the assessment is.
A little worse I guess. That's what we feel about Okaasan's dementia level.
She is less physically active now. Less talking. Less personal care. Less environment care. Memories of adulthood and childhood are often mixed up.
But okay. I think.

Hence the trip. Time to go connect with her family and past while she still can enjoy it.