Wednesday, 26 June 2013

Can do/Can't do

Was going to write a - "Okaasan is on a roll and got herself out and delivered herself to the dentist, maybe she doesn't have dementia at all" posting.
(Thought: "God, my blog is getting boring, nothing to write about recently...maybe Okaasan really isn't that bad...")

But then.

She couldn't.
Last week she could. Today. Couldn't.

Me? I kept far FAR away from today's activities, by taking myself for a haircut at 3 pm - so I was not involved in any way with it all. Luckily!

Dear Son put two signs on the kitchen table reminding Okaasan to get her stuff together and leave for downtown by 2.13 for a 3 pm appointment.
He telephoned her to make sure she was heading in the right direction, and then 20 minutes later he called the dentist to check she'd arrived.
He's said "walk towards Sapporo Station". She'd walked TO Sapporo Station and was wandering lost.

He called her back several times to guide Okaasan  to the clinic and called 4 times to check she was there or not. Calls here and there to make sure she got there...finally at 3.40 pm.
So HE had the headless chicken routine. :-)

Me? I sat in the hair salon chair listening to relaxing soul music and reading the newspaper.....

I got home about 5.30 pm, just as Okaasan staggered home looking very knackered.
"Did you go to the dentist ok? You found it ok?"
"Yes, yes....but I am exhausted. I had an injection, I am tired...." She sat on the hallway chair for about 10 minutes before getting into the house.

I only heard the truth of the visit when HE came home and related the afternoon's headless chicken routine. And on Monday? He is taking a day off work and he'll TAKE her to the clinic himself.



This is the hardest thing about dementia - the can do/can't do.
You can never be 100% sure what she can do or can't
We probably do too much for Okaasan actually - because it is easier for us that way. We do all the shopping and cooking, the cleaning and laundry. She washes plates occasionally, dishes up rice and rubs old newspaper on her carpet to clean it...oh and ties up newspapers for the recycle box.
We should probably let her do more, or encourage her to do more.
But we don't have the time to be patient with her...

So, I was planning the dentist and taking her. Then last week she took off independently and got there herself, while I was wailing and knashing at the subway station.
Today - couldn't do it. Confusion central.

And tonight, the whole experience - certainly the confusion about losing her way - had left her tired and troubled. She didn't want any dinner and tucked herself on the carpet under the blanket, with the TV for company.

Can do/can't do/Can do/can't do....

Thursday, 20 June 2013


How will I know I have dementia?  
(middle aged and elderly students are often asking me this...)

Answer  # 23,894
"When your family and friends are wailing and knashing their teeth, tearing at their clothes and dashing babes to the ground because you f####ed up yet another arrangement with them."

Okaasan decided she could go to the dentist alone yesterday.
Fine. Independent. Can do personality. I'm not a child etc etc

But. She didn't tell me.

I'm standing at the subway station, checking the clock, fretting and wailing/knashing/tearing/dashing.


Dentist Day III all on course for success at the start - whiteboard notice on the kitchen table: "Today you have a dentist appointment, meet Dear Oyomesan at the subway at 3.30 pm to go together". Maybe today I will give her the money to pay for the treatment herself - check to see if she understands the location etc Maybe next week she could go alone? If we just phone beforehand to check she is awake? Maybe.

I go off to work.  Classes.
Afternoon. Have a little mix up with a student who comes 30 minutes late for the 1-3 pm class, so I have to finish class early to go get ready for Dentist trip.
At 3.05 pm as I am leaving the classroom I call Okaasan to check she is awake and coming to meet me.
"Yes, yes - I am leaving now!"
"Okay, XXX Station at 3.30 see you!"
"Yes, yes..."

From the station near work I jump on the subway - go one stop to our near home station and wait inside the ticket gate.Wait. long can it possibly take her to walk from the house here?
I call Dear Son. He checks on his mobile phone with the GPS tracking ...and finds Okaasan already downtown...................


Cue lots of frantic phone calls to and fro about dentist payment and checking and next appointments etc etc. Dear Son locates Okaasan and makes sure she gets to the dentist (luckily he was downtown and between bike taxi jobs)....I do headless chicken thing for a bit and then go to the gym to let off fury, go home with a packed dinner for Okaasan, feed the cats and leave home again.

I didn't trust myself to be able to have dinner alone with Okaasan ( he was working late), too much gyaaaghhh inside me, threatening to spill all over the dinner table and spark a row. Not meant to take out fury on dementia sufferer, know that, know that...but.... so SO need to get away from all of this

Need a movie and dinner out alone.
Got it.
Came home and Okaasan was asleep. End of day.

Was it MY mistake? Did she say on the phonecall: "I am going by myself" - I can't be 100% sure, because my Japanese isn't perfect. But I know she said "yes, yes" when I reminded her of the meeting time and I am 95% confident it wasn't my F### up. There is always a slight fog on the field of communication between Okaasan and Me, but I am 95% sure this time it wasn't that.
I'm guessing that sometime in the afternoon in the kitchen she saw the note about the dentist appointment and decided: I don't need to be taken to that, I can go there myself.

And in her mind that decision was somehow already communicated to me...specially when I phoned. She thought she had told me this. But I'm pretty sure the decision wasn't communicated to me. Cue confusion and confusion.
Yesterday I said that it was a Good Thing that Yuka's mom didn't realize that she'd been away for a week from the house. She felt that her daughter was there, so didn't worry.
But the Bad Thing of this same internal dialogue is that dementia makes you think you've communicated with someone, because YOU have had the thought - so you go on your merry way leaving a trail of wailing and knashing behind you.
I try the same thing with Johnny Depp - I think about undressing him and covering him with chocolate - and I am sure he is understanding the message and will pop over real soon with a bar of Dairy Milk.

### But let's stay positive. Otherwise my ovaries will multiply and explode under stress...yesterday showed us that actually Okaasan DOES know the way to the dentist and can get there alone. The coaching about the location of the dentist (opposite hotel, Exit No. 5, this building, 9th floor etc).
Next week - I am staying well out of it. Way, way, waaay out of it.

Wednesday, 19 June 2013

Comparing dementias...

Can't help it really....I often find myself talking to people about dementia they know, or watching videos on YouTube of dementia sufferes, or reading books...comparing, comparing.

I KNOW no two dementias are the same, because no two people are the same - and dementia is a layer of inability on top of the existing self. There are the similarities - probably most outwardly noticable is the memory loss, the habits such as daytime sleeping and late afternoon/evening alertnmess, the constant little checking movements and questions and note making.

This week I've looked at videos by film maker Yuka Sekiguchi, I went to see her documentary Mainichi ga Alzheimer's (Everyday is Alzheimer's) and now I follow her via Facebook and on YouTube.
The latest video I saw (you can see it HERE) was about her mother's reaction to Yuka's absence; actually a week or more in Australia....mother didn't realise she had gone! Was kind of shocked that she'd just come back with suitcases etc and said "I felt you were here, usual feeling you were here, you were away?"

It strongly reminds me of Okaasan's reaction in the past winter to Dear Son's 2 weeks absence skiing. The first winter, and maybe the second - she actively missed him and asked where he was every day. Last winter she didn't. If I didn't say anything about him, and she and I ate dinner together - she hardly ever asked about him.
His clothes were on the kitchen chair, his shoes were in the hallway - our home routine continued. She seemed content that he was "there" somewhere. She didn't of course remember that she hadn't actually seen him or talked to him for 2 weeks.
And this video of Yuka's mom is just that. Mom was in her own home, other family members were providing the routine of care. Mom didn't miss Yuka at all.

Of course...Dear Son and I are starting to plan a VERY exciting trip in July 2014 to Brazil to see the soccer World Cup....and what to do with Okaasan is in our minds. Probably we will leave her here at home with day service coming in every day to cook and chat. She is unable to shop and cook for herself for a week. I wonder a year from now how aware of our absence she will be?

Other videos I watched this week are:

This slightly scary one of a lady shouting at the food-eating celebrities on TV because she seems to think they are in the room with her and have stolen her food. :-(

An rather soft-focus, surging music sentimental HBO documentary called Caregivers, which looks at sufferers and the people watching out for them. Sufferers' eyes were the stand out in this film for me: how their expression grew worried and tired looking as the dementia progressed, or the blank look to anything happening around them.
Okaasan gets that worried/hunted/tired look sometime....and it is usually a sign that all is not well in her world.

12 Minutes with Alzheimer's - a US Tv experiment with the reporter and a carer donning googles, hand tapes and earphones with confusing noise as they try to accomplish tasks around a home. Oh gawd.......the clothes folding! the searching thru clothes...Okaasan to a T!

Enjoy. Maybe not actually enjoy...but food for thought.

Here in OUR world: I had dinner with Okaasan last night as he was working. I fished around in Okaasan's brain to see if her story about "a JTB tour guide in New York told me Korean food is the best in the world" was still around.
Zilch. Came up with a big fat blank. Gone. :-(
I steered the conversation into Korean food - New York - delicious - you in New York ...and NONE of those prompts brought forth that old, once-familiar story. Nothing. She just said that she'd been to New York on her way to Mexico, and that Korean food was good. A year or two she was always telling us the tale of the JTB guide and what they'd said about Korean food. Always.
Now that story seems to have gone.

Dentist again today.

Saturday, 15 June 2013

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.

Tuesday, 11 June 2013

Family trip out

Took Okaasan to the local dance festival at the weekend - the three of us, with camping chairs to sit on by the roadside.
Okaasan fussed a bit about too hot/too cold, too windy, can't see - but finally we got her settled just right in a good spot to enjoy it all. She leaned forward in her seat and clapped to the music.

Yosakoi Dance Festival is a big thing in Sapporo - mainly downtown on stages and in parades inthe city center streets. But our local team is one of the best, so there is always a big turn out for their local performance.
After an hour at the festival we had early lunch at the Indian restaurant and Okaasan was animated and ate loads. Then home to snooze away the afternoon...and luckily so full she didn't need dinner either :-)
Got another dentist trip tomorrow....

Saturday, 8 June 2013

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.

Thursday, 6 June 2013

Dentist Double Date

Open - wiiiiiide!
Doesn't get much more personal than this...sitting with a ringside seat at the dentist while someone is prone with their mouth open and bits being picked out of their teeth :-(

Okaasan and Me - we went to the dentist together, she at 3 pm and me following on at 4 pm.

I was there for a brief checkup (recent night guard and cleaning) and she was there because of all the recent complaints of tooth pain and strange comments about going to the Ear, Nose and Throat doc. Except she didn't know why she was there. The tooth wasn't painful today. We had to keep telling her.

I drove her downtown and to my surprise the dentist actually invited me into the treatment room, instead of leaving me with the magazines and staff pet photo display. This meant I was doing the chatty small talk to ease Okaasan's mind. I chatted about the realistic imitation flower display, the hotel across the street, the picture, the festival in the park, the dentist's daughter (a student many years ago)...and on and on.

An XRay showed a large cavity top left - no wonder she felt pain recently. Okaasan was trying to wriggle out of it though - "Oh it's ok, the dentist is so busy, I don't want to bother him!", "it's not so bad, is it?" etc
But she caught in the web of decisionmakers - I called Dear Son on my cell phone, Dear Son and dentist chatted, Dear Son gave the go ahead for treatment, then dentist explained it as a done deal to Okaasan and before she knew it the chair was back down and she was being prepped for root extraction.....


I felt lots of sympathy actually, after all the treatments I had last year. But, not enough to let her wriggle out. She is 83 years old, but she needs to eat and stay healthy. And increasing tooth pain isn't good.

Kind of interesting to see how they did an old patient: they had a special cushion for under her back, they fitted a heart rate monitor to her finger and kept checking it as it beeped up and down, they questioned her about taking medicines and general health (Okaasan got stroppy with me when I mentioned that she was energetic enough to do dancing at day service, she doesn't like outsiders to know she goes to that...)
And then they started...carefully injecting and treatment. I sat there - on a stool at Okaasan's feet for 45 close as any non-medical person wants to ever get to a treatment without it being your own out of necessity!
My dentist and his nurse were soooooooooooooooo good......

Poor thing. Okaasan. When she finally sat back up again she looked whacked. I felt a rush of human-to-human sympathy for her and almost hugged her.

Then there was the whole process of deciding whether she would wait for me and my treatment, or go off shopping alone. And who would pay (me) and who would decide next appointment (me)....which was another 15 minutes of toing and froing.
I called Dear Son and his bike taxi to come and pick her up and take her to the subway station and waved her off in the elevator hall - me actually wearing the dental paper bib as I was being prepped for MY check-up...

and so.....Dentist Double Date.


For both of us.