Still Alice

Got to see Still Alice at the weekend, and watched it with a double purpose:
Okaasan and...me.

Although it is the story of a middle aged Alzheimer's sufferer, and the smart life linguistics professor heroine is nothing like Okaasan, I could of course identify with many of the situations and emotions.

And I watched it with me in mind - me and my recent memory lapses.
MY life is far from the smart, linguistics professor too - a lowly English teacher in Japan isn't the beautiful life of a Hollywood movie where people have gorgeous kitchens and stylish bedrooms.

I enjoyed the film. Of course.
Jullianne Moore is excellent. She is catching Meryl Streep up with these kind of roles.

On the whole: I felt the film (and I guess the book too) does justice to dementia sufferers and their families.
I liked the variation in condition, from moment to moment: a woman who is somehow able to put together a family lunch then greets a guest twice; the woman who thinks her daughter must be sick in a hospital room is able to snap at family members a few moments later: "I do still know how to hold a baby, you know".

And I liked the self-preservation acts - the note making, the double checking as Alice is determined to keep track of her thoughts.

On the downside: I felt the film focused too much on memory loss, and less on diminishing abilities (making cups of tea/using a home appliance), and didn't dwell too much either on lack of personal care. Alice went from carefully groomed to ragged, without comment.

But: everyone's dementia is different. Everyone is different.

Okaasan has long been good at covering her dementia tracks, or papering the cracks. She writes a lot of notes to herself about TV programs, shopping, food. She sticks to familiar places and routines, so that life is safe. She is good at answering questions with vagueness, or agreeing with what is said - whether it is true or not.

And me? What did I feel about the movies and the descent into dementia? Am I there yet?
Well, warning signs I guess. I'm an educated person with a love of words and communication. I pack a lot into every day. Multi-task too much.
There ARE bound to be gaps.

I often mix up words for things miso/maple syrup; butter/bacon.
I often can't think of the name of something - is that cos my brain is split over two languages?
I forget appointments.
I leave on an iron all day.
I went to remind someone they hadn't paid me some money...and they told me they'd paid it 3 weeks ago.
I wander the house looking for my glasses/the car keys/a friend's address on a piece of paper.

Hmmm.....

In the scenes in the movie when Alice is given the recall a name and address test. I was failing along with her.

I'm functioning in my world. But I am taking precautions to check for cracks.

Got to get ONE family member gently into their last years with careful help before we start on the next generation!

I've now bought the book Still Alice, will see what I think of that. Onwards.

Is it????

Am I losing it...????

THREE times in the past 3 weeks I have mixed up/forgotten a class time/day.
And I left the iron on in the house - centimeters away from an inflammable material notice board - for a whole day.

These things make you wonder. Make me wonder. 
Are these just slips of the mind, or the start of something more.
Ironically, because one of the films I want to see this month is "Still Alice", with Julianne Moore as a linguistics professor who develops Alzheimer's.

So. The classes. I can explain the mix up on each one. I think.

1) A student who comes very intermittently. She cancels due to work reasons a lot, and if I don't have the following week class written in the diary....I suddenly saw a phone message from her that she was waiting at the classroom door at 8 pm....while I was at home.
2) A student who was coming at 11 am. The class before finished at 10.45 am - and I went off to the gardening center to get flowers for the classroom planters: thinking "Oh it is still 10 am....I have an hour until she comes...". She arrived 5 minutes after I'd driven away.
2) A student who made his class time reservation in a Facebook message - usually he comes Thursday...this week it was Tuesday...and again...a phone message while I was finishing family dinner alerted me to that.

Aghh......I feel bad. My students are forgiving. Nice people.

But it isn't good.

I am double checking everything now.

Caring.

Have reached a new level of care: cutting Okaasan's toe nails for her :-)

And oh MY!!! It is hard! and scary! Usually you see your toes from above. Doing it the other way round....scary.

But she let me do it. And chatted away about best time to do/not having clippers/forgetting/bath time etc etc etc.

Pretty long. Probably painful to walk in with socks and shoes.

After bath time...even if we give her the clippers her attention goes to the TV or she is busy drying her hair, or she just closes up the case of clippers and puts it to one side on the table. And another week will go by with uncut toe nails.
So I put on my best friendly/determined/brightly engaging carer's voice and offered to help her. Got her on the carpet with a foot on a box...and set to work.

Hope she feels better after that.
In fact Okaasan has been going out regularly: walking late afternoon. A few, very short trips alone downtown on the subway. Coming home ok. Summer is her good time.

And...for me....

VICTORY!!!!

That's me, yesterday - ON TOP OF THE LOCAL HILL. I CLIMBED IT FOR THE FIRST TIME IN SIX YEARS!!!!!!

Long time readers will know that 6 years ago I damaged my knee cartilage. Ended up with painful injections, various supplements and treatments. Couldn't walk round the supermarket at one point. Had to use wheelchair assistance at airports.

Gradually leveled up to a walk in the park, and shopping downtown. And skiing, and biking.

But climbing the local hill above the city was too far. It was always my goal: "maybe this year".

Yesterday I suddenly decided to try. Half-way.

At the halfway point I got motivated by all the people around me and went on to the very very top. Took my 90 minutes, not the 45 mins I once could do. But I feel so so so happy that I could do it!

Came home and iced the knee twice.

Best thing: this morning? No real pain! Slightly swollen. But no pain.

BIG achievement. BIG.

Family time

Okaasan had two outings with us this week:
Costco for a mega shopping and lunch.
The Shrine Festival down the park for Japanese crowds and fast food.

Lucky!

It is very incongruous to see her in COSTCO, with all the young families loading up with unhealthy American food - and then sitting in the noisy food court and eating her way through a whole Manhattan Clam Chowder pot.
She pushed the trolley all the way round - guided by Dear Son and bought two big bags of rice crackers.
But it is a good walk and very stimulating for her to be in such a big public place. Almost got lost on the way to the toilets! But all ok.

On Sunday night I had a nightmare that DS was blaming his mother's mental condition on me because "you don't treat her kindly and do enough" - so the next day I eased my nightmare guilt by taking her to the city festival in the park.
I don't know WHY I had that dream - DS certainly doesn't think anything like that...some odd sh** going on in my brain!
Anyway...down to the park festival - all food stalls and tacky prize games. Very traditional.

We walked together thru the crowds and ate octopus in batter balls and snacks and juice. Okaasan very nimble about finding places to sit on low walls and telling me endlessly how there weren't any festivals in wartime Japan etc.

It is quite a long walk thru the park and up and down subway steps - she was tired after that. But happy.

And yesterday - obviously fired up by all that stimulation she took herself downtown on the subway. Getting out and DOING something - even better if it is with us - obviously good for Okaasan's brain.

* Funny thing - I picked some flowers from the garden - don't know the name - but they are white and smell heavenly early and late in the day.
Put them on the kitchen table - showed them to Okaasan.
She couldn't smell them - not even after several attempts. Isn't that strange. This is a strong, sweet perfume - you couldn't NOT smell it.
Is that old people? Do they lose their sense of smell. Very odd.

Just as well. Okaasan's room smells horrible. She can live there and not mind.

Date time with DS tonight - yippeee...couple time :@-)
Cheap Groupon dinner of course.

Never ever imagined.

Never ever imagined I'd be caring for an elderly lady in Japan.
19 years ago today my mother died - I was here in Sapporo when I got the call from my Dad and step-mum to tell me.
Later that year I met a Japanese ski instructor who was here for early-season training.....19 years later I am cleaning his mum's room, monitoring her bath times and making sure she gets home for dinner safely.

Would never have imagined it.

My Mum was only 69 years old when the melanoma/blood cancer killed her. She'd fallen a few times and seemed to have weak ankle bones. Then doctors discovered a soft part in her skull...
69 years old seems so young. I am 54 now. 60 is coming soon. There are so many things I still want to do in life - I need much much more than another 15 years to do it all!

Meanwhile. Okaasan at soon-to-be-84 is going strong.
Not AS strong. But still strong.

The day after we did the family trip to the shopping mall she took herself by subway downtown for a coffee and bought a magazine. Came back within 90 minutes.
Her trips downtown are much less now. Mostly local walking.

And we have a screwdriver plan for the bathroom door.

Dear Son has now supervised a few bathtimes for Okaasan, making sure she gets out by herself safely.
Then she locked the connecting door!
So, he was found a screwdriver that will open the locked door - in case she is in trouble and we need to get inside. Interesting that she locked the door - she never has until now. I wonder if it is a reaction to our closer monitoring of her private time? But bugger that - it IS essential that we can get into the bathroom.

Oh. And wine....
Last night DS asked his mum as dinner ended: "Have you had enough? Are you happy?"
To which she replied grumpily: "No, everyone has wine and I only have water!"

In fact my coffee cup contained water too. Only DS was drinking the delicious looking red stuff with his dinner.

Hum.
We will have to be rethink. Probably shouldn't drink alcohol in front of Okaasan if we aren't going to give her some. She gulps it down in seconds, and then looks around for more - it could be hard to refuse her once it is in view. She has NO control over what she drinks.

Ho hum. Water for family dinners from now on!
Wine for special occasions...

Thru her eyes....

Thru Okaasan's eyes the world is very different - and we get glimpses of that when we walk and talk with her.
Yesterday was Family Outing day to the shopping mall.  After Dear Son had supervised Bath Time successfully he said that he needed some sports wear for work so off the three of us went. First a huge ramen noodles lunch (wow - Okaasan can eat tonnes!) -  and then I kindly let him go off to the sports shop alone.
I walked Okaasan round the mall for mental and physical benefits.

Going to the mall does feel like taking a child shopping - one adult goes off to do what they need, and the other takes care of the "child", checking if she needs the toilet, or something to drink or somewhere to sit down. Alerting her to dangers.
Okaasan trots unsteadily along behind me round the shops...touching what I touch and peering out at the world of people.

There was a stage in the center of the mall with a pretty bad girl singer performing for lots of young male fans.
Okaasan realised this three or four times as we walked round the shops: "look! Look! There are people looking at something, there must be an event! Let's go and see!".
And so we went back and forth between shops and the balcony overlooking the stage area. Each time she got to the balcony edge she appeared to be seeing the girl singer for the first time....

Later - while I was on Shopping Alone Time in the pet store - Dear Son steered Okaasan back towards the parking area. As they crossed the glassed-in bridge connecting buildings - Okaasan went to the window: "is this where you can see the girl singing?". And he realized she thought we were still inside the main mall. Now she had remembered the girl, but the place was different.

Okaasan always, always goes on set routes in her trips outside the home. She really must need the reassurance of the same doors, the same stairs, the same shops - to make sense of where she is. Each trip out must be ripe with confusions.

When we got home Okaasan went to sleep - and slept and slept - all through dinner time and only woke up some time in the middle of the night. It was a lot of experiences for her for one day.