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.