Could she? Breaking it down.

Okaasan whinged at Dear Son the other day: "I don't need  that woman, I can go out on my own in a taxi shopping.

"That woman" would be the wonderful, patient care helper from the local authority. Who comes for two hours every week to get Okaasan dressed and out to a local supermarket by taxi.

Dear Son told his mother bluntly - NO, your mental condition is far worse than you know. You need help in going out and in winter is safer with a helper.

I thought about it afterwards.
Could she do it alone?
What could she do? Couldn't she do?

Task:
Order a taxi, get dressed, get handbag/phone/gloves/key/money - go shopping. 
After shopping get another taxi and come home. Pay the taxi.

Well, to be honest it isn't that hard. 
What areas would be difficult for her? End in confusion.

Ordering a taxi.

Would she just sleep the afternoon away? After lunch fall asleep and only when we come home at 5 or 6 pm, wake up? So, too late to go out? Probably. Usually her days are spent dozing with the TV, hour after hour blending into the same time. The actual decision "Now I will order a taxi and go out in 30/45 mins" - the ability to make that decision and act on it. Gone.

Even with a taxi company number and her telephone - I don't think she could do it. Have the conversation to tell the taxi company where and what time. And then be ready for the taxi when it arrives.

Get ready for going out - don't think she could do it alone. I think the taxi driver would be hovering in the hallway, with the car parked in a narrow snowy street while Okaasan fussed about gloves, or heater, or key, or phone...impossible for a middle-aged Japanese male taxi driver to come into the house and assist Okaasan.

After shopping - coming home by taxi. Maybe she could get a taxi, give them the address to come home. Would she have enough money to pay each time, or would she have used it all for shopping?
And then if there was no taxi outside the supermarket at the moment when she emerged, would she try and walk home in the snowy, icy streets...

Yes - we could arrange it ourselves. Pre-book a taxi to come every Wednesday at 3 pm.
But we'd have to telephone her at 2.30 pm ...and 2.45 pm to make sure she was getting ready.
And still I worry about the poor driver having to hover while she fussed.

Mainly the problem is Okaasan WANTING to go out or not.
I can easily imagine a pre-booked driver arriving at the front door - and Okaasan peering out at the snow and saying: "Oh, a bit cold today, I don't feel like it, thankyou....I don't want to spend that money".

Part of the day helper reason is the cheerful conversation and interaction she gives Okaasan. Monday to Friday in front of the TV alone isn't good. If I am working nights, the amount of conversation with me is limited to a few sentences about the weather or the heater as I rush in and out.

So. We use a day helper.

That is the breakdown of why we don't think Okaasan could order a taxi and go shopping herself. Impossible to explain that all to her, of course. 
And in fact, we are VERY lucky that - until now - she hasn't tried to do any of this. She has a phone, she usually has some money, there is probably a taxi company number on a city public service newsletter - she could decide to head out independently. But she doesn't. Usually sleeping with the TV.

* And in happier news today.
I managed to get her into a bath, then she climbed out of the bath alone and I got the timing precisely right for me to go into the bathroom and start washing her hair. While she was sitting on the edge of the bath.
Just marched in, took the shampoo and set about it with what I hoped was a day service helper kind of brisk, friendly efficiency.
Success.

Now I've given her lunch.

And I am going out to a local cheapo steak place to gorge on steak. I have a cold coming on and my European body-in-the-land-of-tofu is craving MEAT. That will make a difference.

Head cold. Injured cat. Old lady and her bath.
Happy Saturday.

Will just have to open up yet another Adam Lambert video on YouTube and make myself happy.

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?

Pasting on some happiness

So.
The legs are slightly better.
She is getting up off the carpet fairly easily and getting around the house ok.
Only went out twice on her own.

Outside the front door I moved the garden bench nearer the steps so she can use it for support. It used to be there, but as I was drying lavender on it recently and there was heavy rain I'd moved it back against the wall. Maybe she really does need that as physical and visual support.

And I bought a book about rheumatism. For Okaasan.

Just a start, to try and get her thinking about her condition and how to help it. I discussed with DS about the book - "she won't read it" he commented and I share that worry. She firmly believes she knows everything about health because of the health-guru Dr Nishi 40 years ago.

So she rejects any other advice or suggestion.

In my mind I have rehearsed some possibly persuasive conversations: Yes, I know Nishi-sensei was a genius, but that was 40 years ago. You were a young woman then. He didn't need to teach you about rheumatism. But of course study about health is important at any age! You can never stop learning about health can you? Maybe this book has some ideas! Have a look!

I've had that conversation with myself while sitting on the train, vacuuming, feeding cats. Replayed that scene many times.

But at the end of it Okaasan is always dismissive of the book: I don't need a book. I know about health. I studied health with Nishi-genius, I don't need a book. I know about my body. 

and on an on and on and on.

I can see me. Like Ellie in the NHK drama, standing all dewy-eyed and lip trembling. My hopes crushed.

So.

I sneaked the book into her room and onto her table. Put it under some newspapers and bits of paper. Left it for her to find.

This way she can think that maybe she bought the book. That it's her book already. Can glance at it. Get used to the  sight of it on the table. And eventually maybe open it and look at the exercises and recipe ideas inside.

If she mentions it we'll just say: "oh, you bought it didn't you..recently?" Her dementia is advanced enough that she isn't 100% sure what she bought recently.

Okaasan  deep into a program about dinosaurs...with the rheumatism book among her clutter.

 (and yes, I should clean the windows in the door!)

Sneaky. But maybe the best way to introduce the book and any good ideas it has.

* Other news.

* A local convenience store telephoned the house and said they were still holding the magazine that Okaasan bought recently. She bought it and asked the staff in the shop to keep it for her - because it was too heavy to carry. And then forgot it.

* Sorting out thru Okaasan's handbag (I periodically throw out old receipts and forgotten bits of food wrapped in tissue paper)...I came across... Okaasan's TOOTH! The one that dropped out last month. Nearly wrapped in a bit of paper and in a side pocket of the handbag.

This week has been okay. About Thursday Okaasan suddenly had a very swollen top lip. She looked like a chimpanzee. But no bruising. No idea, of course, how it happened.

She ate a little food and said it was tender to touch. But not a toothache. We don't know. She fell on the day I found her sitting on the step? She has some other problem?

Don't know. It's faded again now.

Yesterday we took her out for a Family Outing.

Lunchtime trip to a department store downtown. Car ride, walk round two floors of the store looking at clothes and shoes. Then Japanese lunch in an old fashioned restaurant.

She loved it. Trotted round the shop behind us, touching the things we touched. Commenting on the sale items in loud whispers: "That is too flashy, no ordinary woman wants THAT! Only nightclub staff, that's why they couldn't sell it!". Loving being in a shop.

She ate the largest amount of food she's eaten all week and responded to chat about fish names and shopping. A good time.

When Okaasan first came to live in Sapporo, 5 years ago, she used to go to this department store culture school for hula dance class. That's amazing in fact: she used to get dressed, on schedule go downtown and join the class and its events. Chat to the other members. Enjoy. Until the alleged "bullying".

Now she can't. The whole getting ready to go out on schedule and join a group event thing. Can't get herself on target for that.

Made me think what has changed in 5 years.

And so.

Winter cometh. DS says he'll get the day care manager to come in for a meeting with Okaasan and we'll try to get her interested in going once a week to a hula dance class and lunch. And if a wall of negativity defeats  that, we'll arrange for the local taxi to come once a week and take her out.

Thankyou for your comments:

I hear you. I really do. He IS passive about her medical care. I know. He takes the easy way out.

I am sure it is frustrating to read about this. This inaction with an elderly woman who may benefit from medical intervention.

I feel frustrated writing it.

But. A few points by way of explanation/excuse.

a) It's not my mother. I'm not even married to this guy. 14 years of co-habitation. So until he is away working in winter and she is my total responsibility - he has to be the primary carer. In any society, and definitely in Japan.

 

In winter, when he is away - if she falls down or can't get up to the toilet etc - I am going to be on the phone to an ambulance SO QUICK she won't know what's hit her. Some nice friendly paramedics will carry her out of the house and into a local hospital. And I will sit back with a glass of wine and a big satisfied smile on my face. I'm hoping that will happen this winter. I really do. :-)

b) I think there is a different attitude to crawling on the floor in Japan. The floor is not an alien place, as it is to adult Western people. Japanese people sit and sleep on the floor. Live their lives on the floor. Okaasan certainly does.

So, when her legs were so bad that she couldn't stand - and she crawled into the house from the front door steps. I think MY reaction is more shocked than her, or her son's reaction. 

If my mother or father had only been able to crawl into the house, they and I would have been shocked: "My god, it's reached this terrible level! Like a baby or an animal!"

But for a Japanese person? I think that position is just more normal. Not 100% normal, of course, but not a degrading, unbelievable level to have reached. Just a practical adaptation to a physical change. I can't stand, so I will crawl.

c) The whole No Medical Intervention is HER choice. Yes, made thru the murky prism of dementia. But still a conscious, reasoned choice. A large slab of traditional thinking. Pain is to be endured with stoicism. It will pass. Stay calm and eat a little. Sleep a lot. Let the body right itself. What will be, will be. I am old. The old body needs time to recover. 

And you know - it does.

She goes from a screaming, flinching mess on the carpet to tottering around her room peering at shopping receipts in the space of a few days. Sometimes a week. Sometimes 2 weeks.

But she does. It is amazing.

There is something to be said - and OH MY GOD THIS IS HARD TO WRITE! - to her method. Not rushing off for medical intervention at a sign that the body is under stress. But just accepting it, living quietly with the pain and waiting for it to pass.

I don't subscribe to this myself. After my stomach melon situation 4 years ago - I now happily take my problems to hospitals. It's my body and I decide.

She is 84 years old and she is deciding to do a different thing.

In spring this year - when she announced she was going to quit day care - I reached a new stage in my attitude to Okaasan. After my fury about her decision subsided, I decided:

Let her be. Just accept more of her choices about how she wants to live her life at the end of 84 years. Don't let HER choices give you stress. You don't need the stress.

If she wants to endure the pain and pee on the carpet. 

Just let her.

If she REALLY needs outside help. Or you do. Then get it. In an emergency.

But if she (and her son) want to end her days like this. It is her choice. I am a bystander to her life. A recent part of her life. I have an overwhelming desire to jump in and help and make it better. It's my nature. But she is not a person without mind yet. 

Her choice. My life and stress levels need to be my concern.

I am trying to think like that.

Trying to let it all just wash around me.

Sometimes I can. Sometimes I want to jump in and try to change the water flow.

But thankyou for all your thoughts and support! Nice to know there are real people out there reading this and along for the journey with me. I know I am not alone.

Finally. A cat picture. Cos we all need one.

A new cat tower. Thanks to Amazon Japan. The boys are unsure at the moment. But like the TV cat whisperer Jackson Gallaxy: I am tempting them with snacks into their new playland and hoping that it'll keep them entertained in the winter months ahead.

And...here we go again...a deux.

Haven't blogged - just had a normal life.
As normal as it gets around here. :-)

He was home for a week and we had family dinners, and watched TV and worked and shopped and stuff.
Even went for a date to see the movie Gravity Zero with Sandra Bullock looking SO BLOODY TONED! And George Clooney somehow looking sexy in a space suit. Amazing movie. Go see it with the 3D glasses and lose the contents of your stomach.

I also had an old colleague staying in the classroom - so lots of reunion dinners etc with people I used to work with way back when I was Okaasan-less (didn't even BUY tofu in those days!).
My friend even came to dinner with us and Okaasan in the kitchen. We ordered up a big tray of sushi and Okaasan was very stiff and polite with the guest, we had to tell her endlessly to help herself to sushi. But she appeared to enjoy someone coming to dinner.

Okaasan went back to day care Tuesday and Thursday....slow to get up and ready, needed prompting about gathering the right things together - but happy enough to go.
I took her to the subway station yesterday and released her for a few hours downtown alone. Luckily my shopping/play trip with Cutest Baby and Mum ended just as Okaasan was back at the station.
She actually called Dear Son's phone - but he was still at the ski resort - it was just lucky that I called her a few minutes later. I don't think she knows/remembers that on her mobile phone the One button calls Dear Son and the Two button calls Dear Oyomesan.

And now.
Dear Son has gone again. Maybe a week. Who knows...

Okaasan and I are alone again together.
I cooked her dinner tonight...but she says she has a sore mouth...or is it tooth...and only gingerly chewed on a few grains of rice.
BUT! She stayed sitting at the table with me chatting: and actually said "I don't remember so many things now, it's strange...living on my own would be hard...that's why I live with you and Dear Son!!"
My Japanese isn't great. But I think that's what she said.

I made reassuring noises about losing memory being ok, because he and I can remember the important things...what you had for lunch today or whether you even had lunch isn't SO important. And she agreed and chatted on about how her mother had lived into her 90s!!! and then wartime food shortages, and American planes not bombing Kawagoe, and the military police stealing any food that relatives had sent....on and on and on.

* Clothes shopping alert....
I think I'll have to go clothes shopping again with Okaasan. This time for long sleeved shirts or sweaters. She really has very few winter-place clothes, and the ones she have are old and frayed.
Getting ready for day care the other day she got very stressy:" I don't have ANY clothes! I don't have ANY money! I never go shopping!"...whining like a child.
It's not that bad, but there is a shortage of longsleeves.....
I will have to get my brain together for that.
Can't send her to the shop with money and hope she'll come with the right thing. It'll be another silk scarf with rose patterns, or a bag....

shopping. I hate shopping.

"Good" times a-rollin'....

Okaasan is getting back in her groove.
Back at day care twice a week - and enjoying the dance sessions. Even managing to remember some dance steps, apparently.
Back to walking on her own round the neighborhood, and actually having the energy/muscle power to come home by herself. Twice.
She hasn't been down town yet on the subway alone and walked round all the fun of there. Thankfully.

Interesting that although she apparently doesn't really remember the leg pain saga of September and October ("I didn't go downtown, the roads were bad condition?"), she has some sense that downtown would be a step too far.
Maybe.
She has the subway card, she passes near the subway station on local walks. But she doesn't go in and take a train downtown.
Some sense of her inability? Or just out of that routine now for over 2 months?
Interesting.

As a family we enter winter mode from now on. He has just stopped his summer job as a bike taxi driver. He has the usual November off, to see friends and drink himself stupid and to do all the little jobs I have been saving up for him around the house. Then December he'll start work as a ski teacher. And MY winter job of full-time carer for Okaasan starts.....cos he'll be away for several weeks.

So, with Okaasan getting stronger and walking more we are back to our kind of "normal".

I rush into her room as soon as she is in the day care car: to scoop up old half empty lunchboxes, dirty underwear, old papers, yet MORE bags (will blog about those another time), and try and keep the clothes piles on the sofa and floor to below UNESCO registration as mountains levels.
We shop and cook, and room clean for Okaasan, we do her laundry, we clear up the occasional toilet accidents, we switch her TV channels from repetitive weather or TV shopping to actual programs, and we make sure he has just enough money for magazines and a few snacks.

Onwards.

* My blogging life and so-called reality are gonna meet! I've had a message on Couch Surfing from a woman who is a reader here - and she is coming to Sapporo with her family later this month!!! She recognised me from my CS profile!!! Small, small world.....
I keep hoping the handsome, blonde American exchange student at my university in the 1980s in England will also find me on the Internet....but that hasn't happened yet.
I bet he has an old mother to look after anyway....

Dentist Date II

Another cosy twosome - to the dentist last week.
We left Okaasan large notes at home to meet me at the subway station at 2.30 pm, so I could come and get her between classes - and after a few minutes of nervous waiting...she trotted into sight at the station by 2.40 pm and we just made the dentist's clinic by 3 pm.
It's clear she doesn't really know where the dentist is. On the way I kept repeating the phrase: "almost there now, it's opposite Grand Hotel, isn't it!"...she maybe she got it fixed in her memory.

Delivered her safely for treatment, and then I managed to pay up front and make the next appointment - before I headed back to work. Reassured the clinic staff that Okaasan would be ok this time leaving alone - once she gets outside the building I was certain she would soon walk into a familiar area of downtown.

Later in the evening we all met up again back home for dinner and I apologised to Okaasan for not waiting for her.
"Oh, THAT'S ok! Don't worry at all! I'm not a child!!! It's no problem!" she said happily.

Maybe next week I will give her the cash to pay for the treatment herself. Will still probably have to take her there, and make the appointment myself - but the leftover cash won't be such a large amount. We usually only give her Y1-2,000 a day...any more and she gets shopping crazy in department stores and comes home with expensive, old fashioned vegetables or dried fish...which we then have to work out how to cook.

It's hard - how to balance managing Okaasan's life and how to balance letting her do stuff herself. I'm always surprised that she generally lets us direct things - timetables/money/plans and only occasionally gets tetchy with us about being over managed. I guess at some level she isn't certain and welcomes the reassuring help.

I'm losing my memory, aren't I?

After the Dentist Double Date (me and Okaasan, not me and the dentist...nice married man...and not my type...)....anyway...

After the dentist Dear Son came to the dental office and took Okaasan to the subway station in his bike taxi.

Two hours later at home she couldn't remember that at all.
"I met him? He took me in the taxi?"
"I'm really losing my memory aren't I? What should I do? Should I take medicine or something?"

We made all the reassuring, but honest comments: yes, you are - but it's ok because we know and we check things for you. You remember long ago things ok, but just now things are gone, it's a normal aging thing, you'll be ok, it's not so bad....etc etc

And really that is all we CAN do in this situation.
Okaasan and her anti-hospital feelings would never get into testing and treatments for dementia, never. 4 trips to the dentist in the coming weeks is her limit.
But those moments when the dementia sufferer is aware and needs reassurance.....sad really.

Reality...talks.

So, how are you today Oyomesan? (as Facebook is now cheerfully demanding of us...)

Me? Oh I'm FINE.< is there a sarcasm smilie? :-()

Gave out huge doses of reality today.
Let the cat out of the bag and whirled it round my head madly.
Walked the elephant right thru the room.

And other bad plays on language.

I told Okaasan she has dementia.
And I hung up the phone on Dear Son and told him to stuff it.

And then I happily babysat for 3 hours. ANYTHING is better than this bloody family.

Hah. Got a LOT of agro to get out here.


Are you sitting comfortably? Then I'll begin.

Taking a break from doing my taxes, I wander thru the kitchen mid-morning and Okaasan asks if Dear Son is home.
No, back tomorrow night. Anything I can help you with?

Cue: 20 minutes of VERY angry Okaasan telling me exactly why she does NOT want to go to that place in Sumikawa with the hula dance, and the lunch and the hairwashing.
What IS that place? Who are those people? Why is Dear Son spending money to send me there? That teacher is no good. The students just sit around. It is much better that I go and walk myself downtown to exercise. Those two men came here last week and we signed a contract. Why? I don't want to go there!

SO much fury. She was almost shouting. She almost pushed the table to one side in fury. Slammed her hands down.

But you know what. She was clear-headed.

It wasn't the dementia talking.
It was Kazuko, clear and loud, telling me what she wants. Or, rather  - doesn't want.
Clearly.

So. I talked to her. I sat down on the carpet and talked for 20 minutes.
Ok. So that "culture school" is not interesting. But exercise is important in winter, because your body and mind condition declines - so why don't we spend the money on booking a taxi to take you to the subway station regularly? Then you can go and walk downtown, meet your friend in the coffee shop etc.
How about that?
And she agreed. Much better.

I don't want to end up like that old woman across the road, she is senile - she forgot that she asked me to get a bag for her. Exercise is important for brains.

Yes, well that woman does her own garden herself in summer, but in winter she stays home all the time. You too - it's bad for you. You forget many things, you repeat stories many times - Dear Son is worried about you. That's why he thought "culture school" was a good idea.

After 20 minutes I brought her down to calmness.

But instead I had her fury inside me... I booked a taxi to come and get her after lunch. I came over all heavy with a friend on Facebook about her health decisions (SORRY V!!!)... I emailed Dear Son and told him to cancel the Tuesday day care and accept ski work for Tuesday. Let's just accept that now isn't the time for Okaasan to go to Day Care. Later it will be time - we don't want this negativity stopping her when she REALLY has to go etc etc. Just accept for now that the money should go to taxi rides in winter....we all tried, but maybe we have to accept that she isn't ready for it....etc etc etc.

I had lunch with Okaasan. She told me the same I went to healthy cooking school - film star house nearby -  husband came to look- story 8 times.
I had too much emotion boiling inside me.
So.

I TOLD her she'd just told me the same story 8 times.
She asked me: Did I? What, today?
Me: No, now, in the past 15 minutes while you've been eating that food. THIS is why we are worried about you. Your body is healthy, but you memory now is very bad and if you don't exercise it will get worse. It's not just old age, it is worse than that. It's very hard for us to have these repetitive conversations.

Broke every rule in the Dementia Rule Book didn't I?

You are not meant to tell the sufferer they are suffering? Right?
I've done it a few times in exasperation: kind of like when a child is whinening for sweeties at the supermarket check-out and mum says: ok, ok, I hear you, I hear you!!!
But I've never said it to Okaasan as part of a calm, almost-logical conversation.
She was surprised. But agreed that exercise was important to preserve memory ability, and so going to the subway in a taxi is good idea etc. It was actually all very calm and accepting.

Cats and elephants out in the open.

I read blogs of people in America who know they have dementia, I read blogs of carers whose loved-ones know they have it - doing this whole charade thing is exhausting.
Yes, you have a problem. It's ok, we will help you. You are interested in health matters - and you know that walking and eating correctly are important. We agree.
Surely that is right to do?
I don't know. But it's what I did today. And she was surprised, but not bowled over. Is openness better?


Finished lunch.

Then Dear Son phoned Okaasan and told her: you are going to "culture school" next week.

Then Dear Son telephoned and hassled me for getting into this topic with Okaasan.
Told me he will be home tomorrow to make sure she goes to Day Care. No, she is confusing day care places. She MUST go.

Me: NO, I am the person that pushed us all to do this. I am telling you now - I made a mistake. We should accept she doesn't want to go. Taxi is a better use of money. Etc etc etc.
Yes.
No.
Yes,
Noo.

 I put the phone down on him. And switched it off.

Sent Okaasan off in her taxi.
Finished my tax data on the computer and met my Friend with Baby to go downtown.
Surprised her with a ticket to see Le Miserables and kidnapped Cutest Baby in the World for 3 hours of babysitting at the nearby community center.
Sitting with him was SO theraputic. All my anger and stress disappeared. Feeding him yogurt and fruit, exploring the community center from a 1 year old's viewpoint (ooooo!!! locker doors with keys! ooooo!!!! whiteboards with wheeled feet!!) - so relaxing. He's cute. I love him. 3 hours of cuteness. Soothed.

Dear Son calls to apologise. BUT he will try day care again on Tuesday.
Pick up happy Friend from the movie theater and we head home...
Okaasan calls me from the subway station. I tell her to wait. Okaasan and I  ride home together in a taxi.
I cook dinner.
Okaasan and I chat about all sorts of stuff.....she is almost coherent.

It's been a fuck of a day.

Facebook. There isn't enough space in that status update space.
That's why I rant into a blog.

VICTORY!!!!!!!!!!!!!!!!!!!!

Victory!!!! Victory!!!! Victory!!!!!!

Dear Son is a saint.

I am an awesome, all-powerful Oyomesan.!!!!!!!!!!

Care Section of Toyohira Ward Office in Sapporo is stupendous!!!!!

A young woman came this morning and spent an hour or more at the house, talking to Okaasan and Dear Son. She interviewed Okaasan with a 74 question survey.

"What season is it now?"

"Spring?"

"Does Sapporo have snow in winter?"

"No, Sapporo doesn't get much snow..."

...and other winners...  :-)))

The next stage, apparently is that she decides what level of care/service Okaasan needs and gets back in contact - after reading the doctor's report. And then, maybe in December we get a choice of suitable day service centers that would love to stimulate Okaasan's mind and body.

And Okaasan???

She seemed to go along with all of this. The fact that the roads are bad in winter and this will be her way of exercising.
To make sure of that I printed out 3 photographs of our street in winter, piled high with snow...and gave them to Dear Son to use as evidence.

Towards the end of the interview, Okaasan told Dear Son to leave the room and leave her alone with the city office woman! Either embarrassment, or could it be (hopefully) a taking control of the situation for herself? My health. My discussion? That would be good.

Or????? "I hate these people, please find me an air ticket back to Saitama, I must escape them....specially that British woman who interferes in everything.."

That would be good too.

So. The day has come. I really have wanted this day for SO long. Can't tell you how happy I am.
In fact, when I sat with my Dad's body in the funeral home in England 3 years ago, I told Dad "don't worry, we will get Yujiro's mother into day care or something, don't worry about me, it will be ok..." and then I cried a whole lot more. Sitting there with my Dad's body, clutching his favorite chocolate biscuits.
How's that for drama?
I know my Dad and step-mum worried a lot about me and this situation - the stress it was putting me under etc Yujiro's attitude to outside help.
Now, wherever they are - they can rest on this subject.

Maybe.
Of course, we haven't got Okaasan into the bus and into the doors of the day service center yet.
But we are another step nearer.

I didn't leave anything to chance though.
This morning I printed out my friend's translated letter. The one I gave to the doctor. Then I stuffed it in an envelope and rushed to the city office on my way to work at 9.15 am.
Bugger whether the city office care manager thinks I am an over-micro managing Oyomesan. Bugger that. THIS is important to me. I am a big part of the decisions and care of Okaasan, and I want my voice to be heard.
So I delivered it to the care managing desk - actually into the hands of the poor woman who was heading out to see her first client of the day.
She was a worriedly young-looking woman. Kind of social services/librarian type. Would Okaasan walk all over her. Would Okaasan be fooled by her youth into letting her guard down?
I wondered. And wondered. All the way to work.
Shit. Would she show Okaasan the letter, by mistake or on purpose?
In fact, I rushed back into her office to make sure: this letter is for you to read now, NOT for my Okaasan - despite the fact her name is on the envelope.
I was that nervous about it.

No worries. Maybe. She DID talk about the letter to Dear Son in the entrance hall of our house...surprising him a bit (but he is used to his micro-managing woman after all these years...). So, we hope Okaasan didn't hear that conversation!

Ahhhhhhhhhhhhhhhhh.

So Happy.

I did it.

Showing she CAN?

These are bits of cut up giant raddish - drying for later-pickling. A very popular, autumn activity in Japan. All over the country at the moment people in villages, towns and cities (amazing that really) are hanging up giant raddishes and drying them. It's a sign winter is approaching.

And Okaasan did too.

Absolutely amazing. So, I took a photo.

Okaasan hasn't prepped/cooked ANY food for...what?...a year or more? And suddenly this?
I went into her room late afternoon to close a window and found the curtains neatly pinned together with clothes pegs, and a kitchen basket and a plate full of raddish bits, placed by the drafts to dry.
In the kitchen was the cut off top of the raddish, a supermarket box and a receipt showing Okaasan had gone out and bought it about 2 pm yesterday.
Come home. Done all of this. And then...gone out again, as per usual, about 4 pm.

Really amazing. She looks at cooking shows on TV endlessly, she writes down recipes, she stares at recipes in magazines, she cuts them out etc etc But she never actually DOES anything.
It is a real clearing of the dementia fog. This is something she has probably done every autumn of her adult life. And I bet she helped her mother do this as a child too. Something yesterday - maybe on TV - made her get up and go shopping and prep the raddish for autumn.
I am not exagerating, she really never, ever preps any food. Once in a blue moon heats rice and an egg in a pan (and burns it), heats and forgets things in the microwave occasionally, boils water in the kettle. That is it. Not Decide/Shop/Prepare something.

5.30 pm Okaasan comes home. I help her into the kitchen with a plastic pot of Oden (simmered veggies and fishpaste sold in convenience stores). Great. If she is eating this at 5.30 pm she won't need dinner at 7 pm. I go to the toilet and come back to the kitchen. Okaasan is looking at TWO pots of Oden on the table.
"Did you buy this? Who bought this?"
Well, obviously not me...

In her bag she had one pot, in her hand she had a second pot. She had gone to two different shops? The same shop? And bought the same thing. Buying Oden actually involves standing for a few minutes and talking to the shop staff, because it's displayed in hot tanks on the counter and the staff fish out the bits that the customer orders.
So, Okaasan had stood twice yesterday afternoon talking to two staff in one or two shops, ordering the same thing. And bring it it home.
She was pretty surprised to see two pots :-)

I was happy. Easy Saturday night for me. Yujiro was out at a party. Okaasan could eat her Oden. And I could have a quiet, relaxing dinner myself later by the TV. Easy. No dinner chat required at the kitchen table.

So, there. Another odd day in dementia.
Clearing of the dementia fog to prepare a seasonal food. And then complete fog-out a few hours later by shopping for the same thing twice.

Later Yujiro and I talked about it and he said:
"Sometimes recently I feel she is making a real effort to DO things, to show us somehow that she may be old, but she isn't incapable etc. She wants to wash dishes, the wants to prep food like this."

I agree....to a point. We never talk to Okaasan directly about her dementia. But I think on a basic level she does recognise her failing abilities and every-now-and-then she seems determined to DO stuff. It's great. It shows the woman she was is still there - wrapped in a fog of mindlessness a lot of the time - but breaking thru it sometimes.
The "sometimes" is "sometimes" though. The very fact of my amazement at finding the drying raddish shows what a rarity this kind of activity is for her. It's a parting of the fog for a moment. And then fog returns.

And tomorrow? 9.30 am. Cometh the day care manager.
She'll see the drying raddishes too. Hope that doesn't gain Okaasan too many ability points! Glad I've left the room uncleaned. :-)

Finishing with cute cat picture.
Sunday morning with the newspapers.
In the newspapers? Under the newspapers?

Chickens.

We are chickens. He and I. But mostly he.


We haven't told Okaasan the awful truth yet....stalling until she remembers that she wants to join that hula class.
The class that she isn't good enough for.


I got home last night about 8 pm, he and Okaasan had already started dinner and from the front door I could hear her laughter and his chat.
So I went in all smiling and joined dinner, thinking "did he tell her, or not?", but making sure not to mention hula/Hawaii/dance/exercise in case she got onto that topic.
Okaasan seemed very upbeat and we all enjoyed dinner chat and laughs about stuff.


Went back upstairs after dinner.
"Did you tell her yet?"
"Err. No. She seemed very down this evening, so I didn't tell her."


????????????????????????????


Chicken.


But, me too. I put the task onto him.
We are both nervous about how she will take it, how she will react to knowing: you are not good enough to join a performance level class etc.


We talked about it several times....and he says he is going to be honest with her. That this is best. That: "she should know the reality of her dance level".


Reality? A dementia sufferer?? Hello?????
She is still in 15 years ago thinking, when her husband died and she joined a hula dance class etc - when she could still do the dance steps etc.


This morning was pitiful really. I'm ashamed to say he and I skulked around upstairs and in the kitchen, hoping Okaasan wouldn't ask about the Thursday morning hula class.
It's pouring with rain in Sapporo today, so he has no work. He will be at home with her all day.
Would she suddenly realize it was Thursday at time for a 10 am class?


Well, when we left the house at 9.45 am (gave me a lift to the station in the car), she was still sitting in front of her TV engrossed in the morning noise that is Japanese daytime shows.
She has a calender and a clock, but hadn't yet connected to what day/time it was.


And so. I am here at work all day.
I will go home tonight and find out how that "she should know the reality" worked out.
I expect Okaasan will be in a sad funk, curled up on the carpet by the TV sadly defeated by the world. Pretty sure she won't accept the idea that the old people's hula class may be better for her. So, again. No hula class. No interaction with other people, no feelings of success at being able to do something.


I may stay at the office all night.


But also, this kind of stuff makes me dread (like him) the whole idea of trying-to-get-Okaasan-assessed-for-daycare-attendance.
We know she will fight THAT idea. And trying to get round her to GET her to a hospital for an assessment, and trying to get her to GO to daycare.
Oh, the battles.


We can't get her to even try hula dance class for elderly people. Not even one. I don't hold out much hope for a hospital and a doctor asking questions.


Sigh.


She is too self-aware still. Much too aware. Have to wait until she is more confused?

Shake your maracas!

Is that how you spell maracas? Those South American, dry bean-filled shaking things?


Okaasan went mambo yesterday.

We sent her off to this concert and she had a great time. came home all energised and smiley. And then slept all evening.


She loves music, specially Latin-music and was delighted with the seat I'd got her near the stage.
She went alone - because she really doesn't mind going to concerts alone, and in fact is proud of the fact that she doesn't mind. Often tells a story about how a neighbor was amazed that she would go alone to music she loves...
It was in the concert hall near where we used to live, but Yujiro thought it best to take her - because her memory for places she hasn't been to recently seems patchy.
So he got her primed up in the morning, early lunch, changed the photocopied ticket I'd given her 2 months ago for looking at, for the REAL ticket....she was ready and had her coat on way too early - we had to tell her to go and sit down and chill.
Then he drove her to the concert hall and off she went.


We enjoyed a Saturday at home...well I did a flash clean of Okaasan's room and some of her laundry etc - but also my neglected garden...and a movie on TV...and stuff with cats...


And Okaasan came home all happy at 5 pm, clutching convenience store food she'd bought. And she slept, and he and I could have dinner together.


All good.


Different ramblings: I had an interesting discussion with two older students Friday about dementia, and how/if you would know yourself in the early stages.
One of my students is in her 70s, as mentally alert and on-the-ball as anything - but she sees friends with dementia and hears about Okaasan from me.
Do people know themselves that all is not well - early on?


I don't think so.
Dementia comes in many forms - not everyone even has the memory loss that is maybe the most known aspect of this disease.
Would you know about yourself?
Would things be more confusing and frustrating, arrangements and schedules hard to keep track of? Would it seem that people around you are being less helpful and obstructive to what you want?
Early signs are often - less care about personal appearance, housework, daily life things that need doing, less energy, more sitting staring at the TV, less social interaction, more sleeping...


If you yourself were doing all of this - would you notice??


Funny story from my student S-san - a friend of hers was so worried about getting dementia that she booked an appointment at the specialist and went along to get tested.


"If you're well enough to make this appointment and come along here today - you don't need testing! Go home!" he told her.


:-)

and...finally...for the blog reader who asked me for more cat pictures:


you are SO right. Can never have too many cute cat pictures!!

I keep forgetting things...

Okaasan IS aware of her mental condition, for sure - but not to the extent of it.


"I keep forgetting things" she said last night, as she was reading about an exercise class for oldies in the community newsletter.
The class info listed lots of good reasons why joining the class is good for you: and one of them was of course "to delay the onset of dementia".
I'd got Okaasan to help me read it over KFC dinner - hoping of course that SHE might feel interested enough to go to the community center and give it a go.


But seconds after commenting on her own forgetfullness, she counter-acted it swiftly with:
"...but I'm not that bad, I don't need this kind of class because I go walking downtown every day!".


I gently commented that the "every day" was more like "3 times a week" in winter....between long spells of sitting in front of the TV...but...but...


Complete Truthfulness is never going to happen in this family. It's a Japanese family and brushing stuff under the carpet is in the DNA. I sometimes read the blogs of dementia sufferers - usually Americans, who in a far more direct and pro-active society are fully aware of their own condition and doing what they can to counter-act it.


Here, just the gentle comment stage....


Okaasan wasn't mentally great at dinner last night: rambling on and on in a hamster wheel story - it started out as I-don't-eat-breakfast-Nishi-guru-told-me...and somehow got stuck on the school teacher who had first introduced her to Nishi-Guru - and then she couldn't escape the story - told me about 10 times about how he'd come to the house to discuss which university the older son should apply for, and the difference between the universities, and how the teacher didn't know, and how he'd come to the house to discuss.......and how...and how...


on and on and on.


Rambling meant not eating too, so finally I had to stand up and clear my plates and start washing up to get her to stop talking and finish her dinner.


My students and friends who occasionally meet Okaasan say: "Oh she's sweet, she seems ok!"...because Okaasan is able to do polite chit-chat for 5 or 10 mins. I wish people could see her real conversation ability...this endless story hamster wheels, how a sentence loops back on the one before - with no recollection that she used the exact same words 30 seconds or 50 seconds earlier.


Yu and I are in this together, we can suffer thru these conversations and insert the required responses. Carers who are alone with dementia sufferers have NO escape.


*  Cup of Water or Not? Haven't decided yet. Thankyou to everyone for comments on blog and off it. 
I do kind of agree that deception isn't a healthy thing. But, having the real world example of WHY she needs to start using incontinent supports would be so, SO useful.
This morning the toilet mat was soiled again...so I shall try and get into her room and find the soiled pajamas/pants etc and maybe use that as my lead-in.
I've got the pink trash box with it's trash bag, I've got the ST pads, and I've got the diapers.
All I need is the lead-in and a VAST amount of courage to go in and have the conversation......

Last one standing.

Sorry, haven't blogged.
Too busy being the last healthy person in the household.


Yujiro stopped work finally after 3-4 weeks of non-stop skiing and taxi biking - came home Sunday night...and spent Monday and Tuesday in bed feeling sick (but apparently well enough to watch soccer games on his computer phone)....


Now Okaasan is complaining of a neck ache - which is almost certainly as a result of falling asleep slumped between the sofa and the table - so SHE isn't eating either and is laying low. As before, we'll let her do that for a few days until she forgets why she isn't eating and starts again...


But interestingly, she did remember that Yujiro wasn't feeling well on Tuesday and came into the kitchen to ask me how he was etc.


Of course: mother and son stopped eating in accordance with Nishi-sensei's creed.  Okaasan gives over-eating as the cause of all sickness. In one wonderful moment recently she responded to my gentle, idle chat about the Emperor going in for a heart bypass operation with a comment which kind of suggested even the Emperor of Japan has brought his problems on himself by over-eating....I am imagining maybe the Emperor kicks back on the sofa with a mega-bucket of KFC and a bag of COSTCO potato chips.


Anyway. Yujiro is now back on track and able to battle with our on-going computer troubles...new computer seems to be a better use of money than repairing the old and my tax data may be rescued and fall emotionally into the welcoming arms of the accountant. Or not.


Me? Working, working and.....TUBING!!!!!

This is what bad English teachers do when a hiccup in the schedule gives them an out-of-the-blue Tuesday afternoon off work !!

Just a little side note: cos it isn't big enough to deserve a whole blog entry of its own. Our local city services free newsletter has a big feature this month about dementia and people who care for family at home and MRI imaging etc.

I left it for Yujiro to read and absorb. And then...I brought the extra copy from my English school classroom and slipped it into Okaasan's morning newspaper too.

I really wonder WHAT a person with dementia thinks about their own condition. Okaasan isn't so far gone that she isn't aware of her own failings, I am sure of that. I hope that reading about the newsletter advice about the importance of exercise/ chat with family/ helping out around the home etc will nudge her to think: "yes, I should be doing these things, otherwise these little memory lapses I have will worsen".

I don't think the newsletter advises being extra kind of your Oyomesan though....

Memory and Emotion

Orchid is a new reader to this blog and she posted a comment on the last posting, it was so interesting I thought I'd move part of her comment up here into the main section so it doesn't get missed!
:-)


Here is what she wrote:


First, Okaasan can't remember so many things, yet she remembers if the piles of laundry and garbage in her room are moved/altered. How is it that something so unremarkable can be remembered and she becomes angry? Surely the composition and height of the piles is something even people who don't suffer from dementia would not remember well. Also, she has been angry with you for long spans of time for cleaning her room, but how is it that she remembers what she is angry about for such a long period of time? Why does she remember her paranoid beliefs that you stole a magazine when she can't keep many other memories at hand for a minute?

Is dementia highly selective in this way? Is she storing new memories with an emotional component (those that make her angry or anxious) differently than those which have a neutral component? If so, can that be used to make sure she remembers things of importance which are positive?

I've studied neurobiology a tiny bit, and I know that memories are stored such that both the details and the emotions are locked in together. It is impossible for one to be elicited without the other, and ironically, when a memory is jogged by external stimuli, sometimes the details of the memory are not brought forth but the feeling is. This is why people have anxiety and don't know why in certain situations. The emotion stored with the memory of a similar experience comes out, but the memory itself doesn't make it. I don't know if this relates to dementia, but if your reading has revealed any answers about this selective memory situation, I'd be very curious to know.


My thoughts....


1. I think she remembers what is important to her - and the "you stole my magazine" 2 years ago was a good example of that. Magazines are important to her. She makes special trips to the shops to buy the latest, she sits and looks at them in detail and copies down recipes from them. That time I probably removed a recently bought magazine...now I am much more careful and I take out magazines from the BOTTOM of the piles....!


I don't think she notices the changes in piles of clothes/newspapers/trash around her room - but if she can't find a particular item of clothing WHEN she is looking for it - then maybe the knowledge that we go into her room when she isn't there comes crashing to the fore.


She appears to remember the real angry times for about 5 days - or at least the emotion continues for about 5 days...and then it is gone again.


I reckon she DOES know we go in and remove clothes for washing and take out trash - but she accepts it basically.


2. Positive or Negative emotions, are they stored differently? I don't know! But I think the positive are easier to retrieve if SHE is basically happy in her days.
So every single time we eat okonomiyaki (savory pancake) it brings to life her happy memories of eating it after school as a child. I guess we ALL bury negative memories...


3. I think dementia sufferers do have selective memory - and for carers it can be disconcerting - you are never quite sure if she has remembered or not.
I've even seen her lose the memory of one of her own favorite stories...she is telling it as usual, and then the next piece of information isn't there. The following day - same story and the missing bit reappears! Once or twice I've supplied the forgotten details - but that confuses her because of course there is no reason why I should know HER story (except I've heard it a million times already).


It's all very strange....and interesting...funny...and frustrating....