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.

Day 7. Rescue....zzzzzz

I'm not doin' it alone anymore.
He's home from the "ski instructors' meeting in Tokyo", and even remembered to buy a box of cakes made in Okaasan's birthtown Kawagoe. What a Dear Son!!!

He got back just in time. I was exhausted. Still am. Somehow, knowing that rescue is at hand makes the last 24 hours harder.
Okaasan was fine, to be honest. But I was having a busy work week, and what with the weather and the cats and all the other bits of life....shattered.
By the time I got home and got dinner on the table I was almost incoherent. So good to have him chatting along all jokey.

How did Okaasan feel about his week-long absence this time?

Well, in the morning I mentioned that Dear Son was due back around 4 pm.
"Oh? Isn't he back yet?" she said vaguely looking at the calender...

And when he arrived at the door he didn't have his key, so he rang the bell. Okaasan came into the hallway asking: "Who's there?" and opened the door.
"I'm back!"
"Oh, you aren't upstairs?" she replied.

;-)
So, Okaasan not really stressed this time about his absence at all really!
Last year she was more aware of his absence and asked about him several times. Not so this time. Good really. Shows she is basically ok with me looking after her.
And the mystery doorbell ringer didn't make an appearance either.

So. His holiday is over. Before work start at the ski resorts (opening this weekend in Hokkaido!!!), he has important stuff to do. 
Change the car tires for winter. Number 1.
Fill out all the paperwork from the city office for DAY SERVICE. Number 2.

And! Apparently I read the paperwork wrong. Okaasan's level is higher than I thought - meaning even MORE care/service is possible. ;-)
There are two Low Support service levels or 1 and 2, and then the 1-5 of actual Needing Care ranking. Okaasan is Level 1 in the second stage.
Excellent.

And. More good news: yesterday was my final day at the physiotherapist for the latest knee drama. My left thigh muscles are now so super-strong I can maybe do ski jumping on one leg....please come back if you have problems...but continue the exercises at home.
Good.
Now I can get onto the next health problem - I've reached the age where it is all falling apart - next is this potential polyp in my stomach. I need the stomach camera and I've found a hospital where my student swears they will knock me out senseless before forcing tubes down my gullet.
In my working week I don't have time for more than one Japanese hospital wait-for-hours routine - so now the knee is super-strong it is time to move to the next problem....

And. It is a long weekend. Three glorious days of no work. I need it. Rest time. This week was tiring. I need to get energy up for the whole Christmas/End of Year....and I need to ski.....ski ski ski ski....

This is a video of Niseko one of our famous ski resorts earlier this week. Some guys from a local company went up to enjoy first runs in a deserted ski resort with no lifts working. Oh.....look at it...look at that powder....oh....

And so............

Quiet here tonight.
We are watching baseball, hoping the local team will win this stage of the national championships.
Okaasan is sitting in her room downstairs watching TV.

We had dinner seperatly. We ate first in the kitchen and she stayed in her room. Then after we finished and came upstairs, she went and got food and took it into her room.

The doctor said:
Okaasan scored 15 out of 30 points in the dementia test. Not early stage dementia anymore, pretty advancing dementia. More than we thought.
Even before meeting the doc, when the nurse asked Okaasan: "How often do you have a bath?" she cheerfully said: "Oh, every day!", and when Yujiro corrected her she said:"you don't know because you are out, I have a bath". Of course that could, techincally be true...but it isn't for sure. She always does laundry in the bathroom and leaves the water in the bath, and wet towels around.
That only happens when we TELL her to have a bath, once or twice a week.

The doctor says a recommendation for day care shouldn't be a problem. Dear Son should go back to city office and make the application, she will recommend it.

Phew. All of it.
But for now, we are quiet.
He is feeling down - "I thought I was doing my best for her, I didn't realise how bad she was", and I just feel tired with it all.
Okaasan, who amazingly DID agree to go along to the doctor on her son's direct "in winter, you don't exercise enough, you should go to daycare, but first you must go to a doctor" - I am sure she is feeling tired, stressed and not happy.
So, we'll leave her to have a quiet weekend and hope it all fades in a day or two...and she will come back into her routines.

So. There, we did it. 15 out of 30. It ain't very good. We probably already make allowances for her, because we live with her. She does a good job of covering her confusions about life. But big gaps are developing in her mind.

Back to the baseball. This week was neverending on so many counts.
My weekend starts here.

Oyomesan Dementia Scale

No - not me! Yet.
Although, with all the stuff that I am trying to fit into this week my time is probably not far off.
There will have to be major sitting and doing nothing this weekend.

Tonight I found time to try and condense Okaasan's ability level into an easy-read A4 page.
A kind Japanese friend has agreed to do a quick translation job on it, in time for THE doctor meeting on Friday.
So, here it is. Trying to be truthful here. As a general appraisal of Okaasan's abilities. She isn't a gibbering wreck, but she isn't an old lady operating on all cylinders. Some of my students are in their late 70s and early 80s and I notice the difference in their public conversation ability and direction of their lives.

Here is where I think Okaasan is in the autumn of 2012...after almost ...oh shit... FOUR years of living with us! FOUR!! How time flies...

Oyomesan Dementia Scale

Thank you for agreeing to see my mother-in-law.

My main worry is winter: her dementia becomes worse. She goes out to walk only 2 or 3 times a week. She cannot judge weather or road conditions. She is home alone 9 am to 6 pm, watching TV or sleeping. My husband is away from home for work 1 week-10 days. I work full-time. 3 nights a week I work until 7 or 8 pm.

Her mental and physical condition becomes bad, and she is doubly incontinent. She hides soiled underwear and uneaten food in her room.

She needs once or twice a week day care mental and physical stimulation.

 

Her abilities.  Scale 1 – 5  (5 is good)

 

Going out alone and returning.                                   4

           ( a few occasions of return with police or neighbors)

Feeding herself.                                                             4

Dressing herself.                                                            4

Body washing                                                                 3

(but bathtime and hair salon must be arranged for her)

Clothes washing                                                            2-3

Room cleaning                                                               2

Cooking                                                                           2

Shopping                                                                        3

(same purchases day after day, same shops)

Money management                                                    2

Conversation initiation                                                2

Conversation response                                                 3-4

Single incontinence (urine)                                          2

Double incontinence (feces)  Winter                         3

Understanding of TV/newspaper etc                          3-4?

(but recently watching weather channel 1 hour etc)

Awareness of “what did you do today?”                                 2

Machine use at home                                                    3

Sleeping at night                                                           2-3

Hallucinations (winter: stranger at front door)        3

Awareness of season/month/date                               3

Awareness of time/having eaten lunch etc                3

 

Peeking through the dementia fog.

Dementia isn't 24/7.


At least not at Okaasan's stage.
Anybody meeting Okaasan for a short time wouldn't think anything is different: just a nice old lady who says various stock phrases about the weather/food/names/traditions...and maybe repeats them a bit.
Spend a bit of time and you realize the phrases are repeated a lot and nothing much "new" is offered into a conversation, instead slightly inappropriate giggles and endless checking actions.
Living with her: silences and emotional highs. Sometimes fluid responses to chat and almost-normal conversations. Sometimes hamster-wheels.


And sometimes: wonderful moments of clarity.


Last night Yujiro and I had our usual pre-dinner glass of wine and nibbles of cheese upstairs when he came back from work.
Then I made dinner (stir-fried squid and ginger/cabbage/rice, soup, pickles - really GETTING this J-food cooking now :-)).
Called everyone to the table around 7 pm.
Yujiro came with the last centimeter of red wine in his glasss. I'd already quaffed mine and refilled my glass with water so I could take my menopause and cartilage supplement pills.


We all sat down and said: "Itadekimasu" (Thanks for the food, let's eat) standard Japanese phrase before eating anything.


Okaasan looked across the table at our wine glasses....


"Excuse me, but can I have something to drink? You've got red wine! You've got sake!"


??????!!!!!! Loved it.
Yujiro explained that he was finishing off some wine, and I'd got water, not sake.....and Okaasan was ok with that excuse and busied herself making tea (which took ages with all the checking of water and cup and tea and water and cup and tea..).


But it was sweet. Complete clarity of mind and expression of need.:-)
This on a day when she'd needed reminding to have a bath, needed lunch setting out for her, and has a wet towel in a bowl sitting on the carpet of her room....amid the dementia life-fog complete clarity of thought and awareness of surroundings.


Okaasan loves a drink. A bit dangerously so in fact, because she can't remember HOW much she has drunk and tends to knock it back unguardedly. Over the New Year holidays must remember to bring some alcohol to the dinner table for her. :-))

Kitchen table travels.

Okaasan took me on a tour last night - from the kitchen table - to Israel, Jordan and Egypt.

We looked at the Wailing Wall, we dipped our toes in the River Jordan, we were disappointed at the lack of souvenirs, we learned about Christian history...

She was on great form in fact. Pretty lucid and clear in her conversation. Repetitive, but not hamster-like. Just a nice cosy chat with an old lady telling me about her travels.

When Yujiro's Dad  died (a few years before I met him), Okaasan took on a whole new life - joined the hula class and started going abroad with a religion-study group. I've seen pictures of her riding camels and hiking Ayre's Rock. It must have been a wonderful time for her - free from being a wife and no need to be a mother or grandmother.

Dinner last night I served up fish and Japanese-style veggies and soup and pickles - and she talked. Students had given me persimmons and I mentioned that in England persimmons (if we can get them at all) maybe come from Israel. 

"Israel" was the key word - and Okaasan was off on her travels....with me as her audience.

So, yesterday all good.

Lunch on the table and I doled out Y1,000 of spending money to her before I left for work. She accepts this - us giving her a little bit of money - it always surprises me really. How she accepts the passive role of someone who doesn't have money, but gets it from us.

I was home at 4 pm - as the skies of Sapporo darkened for the first snowfall of the season. Local radio and Tv had been predicting this event since yesterday, on and on, everyone was in "scurry mode" to get stuff done and get home before the snow arrived.

I got home and found Okaasan....preparing to go out.

She made it out ok, into the dark and cold with the first flakes falling.

She was back in under and hour luckily.

Yujiro called from yet another drinking party with old friends in the Tokyo area. He has a new Smart Phone with a SKYPE Ap. and like a child with a new toy he is endlessly calling me and asking me to shout "Hello" and wave at various drunk friends in bars. I'm not sure if it's the So Young Looking Foreign Girlfriend, or the Smart Phone with SKYPE he is showing off, after all these years as a couple I suspect the gadget has the greater appeal.

He is back on Thursday, so my Mission Oyomesan is heading into its final stages - and has been pretty successful I reckon. :-)

Thankyou for some nice comments this week : saying what a kind, sweet, generous woman I am.

Well, I am I suppose. I try. I think I fought this Okaasan situation for such a long time - giving me and her stress. Now I am accepting that this life is what it is...for a few years. I am SO LUCKY that Yujiro is the rare kind of Japanese guy who takes an active part in the caring, he shops, cooks, cleans (a bit). I am also very lucky that I have my own life and work to escape to.

And I'm lucky to have this blog to vent into!!!

Watching those dementia videos recently reminded me that Okaasan is probably at Early/Mid stage dementia now. 

On a good day - like last night, she is just a rambling old lady, who needs someone to cook/clean for her and control her money. She doesn't initiate conversations and she can't decide  and act on thoughts like "Have a bath" or "have a haircut". She has single-incontinence, sometimes double. She hand-washes a few clothes. Usually not sure what day or month it is, not sure whether or what she last ate.

She can: dress herself, go to the toilet herself, feed herself and go out for a walk and come home. She can follow a conversation and respond.

On bad days: she gets into a depression and confusion, can't operate machines, can't use kitchen things, hunts for "lost" things, accuses people of stealing stuff, has double incontinence and hides the soiled underwear.

Being nice and kind to Okaasan is a self-preservation act for me: Happy Okaasan = Easy to Manage Okaasan = Relaxed Oyomesan.

:-)