From one moment to the next..

...you never know where dementia is going to take you.

One of the messages to come out of last weekend's films (apart from the fact that I am NOT a good publicist) is that everyone experiences dementia differently. While there are common threads: the short term memory loss/the raw emotions etc, nobody's brain is the same and how an individual deals with the illness can be very personal.

Even within the same person - from day to day, or even hour to hour - the dementia is working differently. It makes living with dementia an interesting ride - trying to judge whether we are needed to help/remind/protect/guide - or not needed at all.

Generally Okaasan isn't so great at doing clothes laundry now.
She washes some of her clothes once or twice a month. Usually at the same time as having a bath. Usually leaves the wet clothes on the bathroom floor or in the sink...for "later" - a later which never comes. She can walk past wet clothes and not see them. Once they are dumped on a surface they are left.

This week I saw how Okaasan can react very differently to an almost identical situation...just days apart.

On the first day I'd done some of her laundry and put the clean, wet clothes in a wash bowl. I went into her room and gave it to her: "now is sunny! Maybe a good time to hang the clothes outside!"
She readily agreed. Put the bowl on the floor and started getting dressed to go out to the clothes line. Dressing and watching TV.
A few minutes later she was dressed. Stood there. Wondered why she was dressed? And sat down again to watch TV. The bowl of wet clothes forgotten in an instant. Now left. And would have stayed there for...hours...days....(but I rescued them).

A day or two later I am in the final flap of getting ready for work. Shower, teeth brushing, get dressed, get lunch pack, work books, car keys etc etc. The usual cramming everything into the final 10 minutes.
Okaasan comes into the kitchen: "the blanket fell down off the clothes line! You should pick it up quickly before it gets dirty!!"
"Yes, yes - in a minute I will. I am wearing a bath towel right now - I'll do it in a few minutes...thankyou, thankyou!".
She came and told me again a minute later.....and I promised to get to it sooooon.

Then I'm upstairs, dressing, hair drying, this that this that....5 minutes later I am out in the garden to attend to the fallen blanket.

It's back on the clothes line. Okaasan has got herself outside, down the steps and picked up the blanket, pegged it back on the line. And is back inside watching TV. She saw the situation, reacted to it, acted on it and finished it. No problem at all.

Why such different responses?
Did situation 2 have an element of "danger and risk" of dirty laundry on the ground - so Okaasan could keep that thought in mind and respond to it? Was situation 1 just a bowl of clean laundry which she didn't have any knowledge of until I handed it to her? So she quickly forgot about it?

Or was it nothing at all to  do with the laundry situation? Just different day, different dementia function? Strange.

A bite too far...

Bit off more than I could chew.
Licking my wounds.
Learned my lesson.
Sharp learning curve.
Positive, not negative.

With Sekiguchi-san - director of "Everyday is Alzheimer's"

All of that - and a lot more - could apply to me this Sunday evening. My film screening event was...err...under attended.....60 people came....far far short of the 240 plus I was hoping for.....

My fault. I didn't hassle the local newspaper enough to make sure of publicity. I relied on a press release delivered to the dozy door men on a public holiday, and uploaded information on the paper's electronic Events Diary.
I should have called in favors with people I knew...should have made the phone calls....

Going to be some hasty financial rearrangements in my life. Holiday in America this September looking uncertain...

Me counting the empty seats...

But. But.

The people who came loved it. Loved the films. Loved the director's talk. Great learning, emotional experience for all of us. My team of students/friends were dynamic as a set up team. Old students/friends came...it was fun...on that level.
But still. A theater for 370 people...had 60 people in it.....lots and lots of space....

After the screening four of us - including Dear Son - went out for dinner with Sekiguchi-san, over beer and food we chatted and laughed. She is a power house of a personality. I loved meeting her. I feel more energy to do right by my Okaasan after seeing the films and meeting her.

The actual practical thing for her and us? While we are out promoting caring, flexible dementia support in general - her mum was in short term stay for 2 nights and our old lady was dining on convenience store food boxes. We had to call from the restaurant to make sure she was home safely and eating.

It WAS great to see the audience being moved by the films, it WAS great to see Dear Son absorbing a whole lot of information...it was good.....good...good...

But.

Not going to write more cos I'll get teary. And I'm meant to be a big girl now who can face up to life's trials. Learning my lesson. 

Positivity. That is the best thing. 
And another beer.

Home and Away

Home

Life with Okaasan pottering along - no big dramas. She seems very mellow these days. Basically happy in her day to day routines.
Going for walks in the neighborhood late afternoon - once or twice downtown alone. But her Going Out trips are generally more limited in scope now. She sits and watches TV, sleeps, watches more TV.
This week's bath time I was in the house to make sure she got out ok - which she did unaided. We had lunch together, a little chat about wartime Japan. 
Okaasan did some "smalls" washing the other day - managed to use the washing machine on spin cycle, but then got pretty confused about HOW to hang the clothes up outside: the outside sandals, the clothes hangers, the space, the inside shoes - all those steps took a bit of time.

There was a program on TV about a manga artist and his mother who has dementia. Okaasan was watching it and laughing as the mother failed to recognize her son in a hat etc - and she actually came to the dinner table and talked about it: how funny it was. Unusual really - she hardly ever talks about what she has just been watching on TV. This obviously made an impact on her.

I've written before: the elephant in our midst is Dementia. 

It's a very big topic in Japan right now of course - all this aging society etc. But we don't talk about it at all within our family. Seems too sensitive? Recently I found myself stopping my chat-flow as I described an 89-year-old student who is caring for his wife with dementia...."err...err..he is very active....err..and he is caring for his wife...err...she is sick...". Self-censoring.

I have film promotion flyers/posters for the film screening this Saturday - and I am trying to be careful to take the car window flyer down when the car is parked outside the house. In case Okaasan sees it and feels something negative about me and this event. Over-sensitive?

She knows she is "bokke" - "forgetful" - but has the storyline to us that it isn't so bad really. Just natural old age. Whether she has deeper worries on the topic we don't know. If we react to an incident of memory-/confusion we try to joke about it and laugh: your body is healthy, but your brain is a bit...you know!! It's ok, we can help you. No problem!

But we have to be watchful about her life - care for her and fill in the gaps.

I watched the film "Everyday is Alzheimer's"on DVD again yesterday at home - because on Saturday I probably won't get the chance to enjoy my own film event...

There's a scene where the day care staff come and discover that Hiroko has long, yellow talon like toe nails. I remember that when I saw this scene 3 years ago in the cinema I was amazed: how could the family not notice this? Shocking! (and kind of brave to admit that on film...)

Now I watched it and realized we had exactly the same situation with Okaasan this winter: finally realized that she had stopped cutting her own finger and toe nails. Long talons growing and curling around the toes. Yuk. Actually her finger nails are long now....
You CAN live with people and not see this stuff. They are wearing socks. You don't focus on the details of their personal care. They are walking and talking, not incapable in a bed. So you aren't looking out for such personal things.

It was good to see the film again.

Away.

SO!
If you are in Sapporo, north Japan this Saturday....

COME TO THE FILM!S!!!!!!! and come and say "Hi Amanda, I read your blog!". I'll be the curly-haired foreign woman running around in a panic....easy to spot. 
Lots of good buzz about the event - local newspapers will feature it this week and I have a wonderful team of helpers ready to staff the event. The theater seats over 300 people....
Come and join us for toe nail clipping and other tales.
Personally I am so looking forward to meeting the director Yuka Sekiguchi - she has been my inspiration for care with humor. It'll be great to hear her talk about her films and after it is all done, I get to have dinner with her too. ：－）

Happy....gurgle gurgle...

Happy Mother's Day!
Hope you are being good to a mother figure in your life.
I am.
I was in the bath with mine!!!!!!

Don't think that is the usual thing to do with your beloved mother figure...usually flowers, lunch etc

Okaasan got stuck in the bath this morning and couldn't get out.
I had to jump in to the bath and haul her round carefully by holding her under the arms and pulling her....then 10 minutes later she finally managed to stand up and get out of the tub herself.
Thankfully.

Sunday morning and bathtime. I started the bath running and alerted Okaasan as usual. Set out the chair, towels, clean clothes and hair dryer. She got into the bath about 10 am.
By 11.30 I was starting to wonder....an hour is not unusual...but....

I was starting to prepare her lunch, and hoping to slip away myself for lunch out (because I am the kind of horrible daughter-in-law who tries to escape the duty lunch if I possibly can).
I called out to Okaasan thru the bathroom door: Are you ok? You've been in the bath a long time!
She answered me, but her voice sounded a bit odd.
I left it 10 minutes. Tried again. Heard a bit of water sound. A voice again: I'm ok!
5 minutes of indecision...shall I cross that privacy line by marching in on someone in the bath? Ahh....

Then I opened the bathroom door and walked in.

Okaasan was in the bath on her side. In the water. Propped up on one elbow, with her head just above the water. Very red in the face.

Oh my god.

She couldn't pull herself upright to a sitting position. Don't know HOW long she'd been on her side like that.
I jumped into the bath. Socks, leggings and all and supported her body weight. Pushing her up, pulling her round in the bath - getting both hands to hang onto the side of the bath. Let out the bath water in case she slipped and went under. Rushed to the kitchen to get a cup of cold water for her to drink.
Lots of protests of "I can do it! I can do it! Myself!!" - so I retreated. Waited upstairs nervously.

10 minutes later I went back - wondering HOW I was going to haul her upright to her feet. Found her standing naked in the kitchen. Safe. She'd got out herself. Didn't remember a thing. Wondered why I was SO relieved.

Oh my god. That was close. I could so easily have set her lunch on the table and gone out of the house for a few hours. She could have stayed in the bath like that for ages. Could have...all the variations of "worse"....
Okaasan could have died in the bath on Mother's Day. While I was sitting in the park with a sandwich.
Awful.
Certainly can't leave her alone in the bath from now on. We'd thought until now that she was ok getting in and out alone. Not now.

Happy Mother's Day.

Actually we did it yesterday, because DS was home. So the three of us went out for a soba lunch and a walk round the shopping center. Okaasan enjoyed it and all was bright in the world.

The perils of blogging....

Got a e mail via the comments section last week from a researcher on a TV program: looking for "international couples" in Japan for a variety show about the shocking truth that there are foreigners leading normal lives out there in Japanland.

Would we be interested in joining the fun?

Well, now. I and he have appeared on TV a few times. Local programs to do with the FIFA World Cup and other international events. Few interviews in local newspapers.

 But this is different. They would almost certainly want to come and film our family life here at home. While it would be a giggle for us - after a massive housecleaning stress, it really wouldn't be fair on Okaasan at all. A Tv crew here in the house. 

She gets all nervous and stressed when friends come here for dinner.

TV crew impossible. 

So we replied "No" to the TV researcher.

It's funny. I have debated with myself the ethics of writing this blog about our life with Okaasan.

Dear Son knows I write this. He found out a year or two back. Wasn't too bothered.

Okaasan doesn't know. 

I have argued to myself that it is ok: I don't write anything here that I don't say to friends or students. That a blog audience is a bigger version of that.

Peeing in trash cans and domestic violence and all that...

Nobody in Okaasan's life is ever going to read this and tell her. It's an English blog. She knows so few few people.

I write with weariness and anger, with admiration and care.

A small blog is ok. I have convinced myself.

But TV would be a step far FAR too far! :-)

Alcohol and blossoms

Alcohol and cherry blossoms go together in Japan - as the nation celebrates the flowering with parties under the trees and over-consumption of various brews....always a bit of a shock to Muslim visitors who come here for the flowers and are met with scenes of debauchery. I've heard that they sometimes complain to tour guides. Who can't do a whole lot about the debauchery of course...

In our family we are also keeping our flowers and alcohol separate. And our alcohol under strict control...

Okaasan bought the bottle of plum wine for herself. I luckily found it when I was checking her bag for yogurts and half-eaten bread rolls. Dangerous! No way should Okaasan have even this small bottle of alcohol in her room without our supervision.

She drinks alcohol like water. Actually with a lot more gusto - tipping her head back and draining the last precious drop into her mouth. Even shaking the glass like a child trying to get the very, very last drop. All that in about 2-3 minutes. If there is alcohol in front of her she ignores the food and drinks all the alcohol first.

So I spirited away the plum wine. Now we are giving her small amounts at dinner time, mixed with water. But if we have alcohol in our glasses Okaasan spies it and wants some. We'll be on water at dinner times soon!

I think many alcoholics develop dementia as alcohol kills off brain cells. But I bet any dementia sufferers can easily become alcoholics too - with an uncontrolled pleasure in drinking and no sense of how much they've consumed.

So Okaasan's alcohol is carefully monitored. A drunk Okaasan is not something I wanna see...or deal with. Although...I wonder what kind of drunk she is? Over the top happy or angry?

 *********************

And cherry blossoms - lots and lots in Sapporo now. 10 days too early and all flowering in the city parks. Dear Son took Okaasan out to visit a park, because on her regular walk round the neighborhood she only every goes to the supermarket and the Seicomart. 

So he took her out for a walk in a big park. Walk and a sit down near the lake to enjoy an ice cream. Great son and mother bonding time. Sunshine. Flowers. Ice cream.

That evening at dinner - Okaasan had NO memory at all of all of that. Zilch. Poor DS! He gave up his time to make mum happy and she didn't remember it!

When I asked about the trip she replied with vague general statements about cherry blossoms in the city now. The hours with DS chatting, walking and enjoying ice cream? All gone.

Of course the pleasure from those experiences must have been with her - which is a big positive. But the memory of 4 hours ago had gone.

This is of course why Okaasan has less and less conversation to offer - we usually talk about what we've seen or done, or we ask conversation partners about what they've seen or done. Dementia robs you of any memory of "seen" and "done"...so you can't talk about it.

The only "seen" and "done" is years and years ago.

As Okaasan drinks the plum wine she tells us (many times) about a woman who lived near her home in Saitama, and how the woman had plum trees and gave Okaasan old plums to make plum wine with etc. That story is there. Still.

Happy Golden Week everyone!

I'm home with Okaasan, the cats and the garden. Planning to do a whole lot of nothing much.

A little film screening promotion work. Dinner with friends. Movies. 2 months of accounts inputting on the computer.

And alcohol rationing!