Physical ability

Here is the physical therapy training room where we spent yesterday morning watching Okaasan being put thru her paces.

Really interesting - stretches and massages, then:

* practice in sitting upright and swinging legs over the side of the "bed".
*  Walking between those bar-rails to the chair at the end, turning by changing hand position and sitting down.
* Standing up right from the wheelchair and remaining standing for a count of 20 - holding onto bars in front.

All of this while wearing heart rate monitors.

Okaasaan enjoyed it. You could really see that she enjoyed the physical challenges and chatting to the young, cute therapist. She did well and we sat nearby and watched and gave her smiles and thumbs up.

Before the therapy session started we spent an hour with Okaasan and her wheelchair. All over the hospital, looking at views, looking at prints on the walls and two trips to the toilet with the help of nursing staff.

"Can you stand by yourself?" Dear Son asked Okaasan at one point as the three of us, plus wheelchair, were squeezed in a toilet cubical.
"Stand myself? Of course I can! I couldn't live alone if I couldn't stand on my own!"

Very true.
That is the point!!
Okaasan thinks she DOES live on her own - somehow surrounded by other elderly people in wheelchairs and nursing staff in white and pink uniforms. We know she doesn't - and are trying to judge whether she can even come and live with us again and be left alone for a few hours safely every day.

The hospital did the dementia/life assessment again last week.
Maybe a score of 9/30....two years ago it was 8/30.
It was 14/30 six years ago.
Does this mean OKaasan has improved???????!!! OMG!!!

No. I don't think that interview test is so accurate. But I am surprised if they really think she is mentally the same as 2 years ago. Anyway. That interview result is considered alongside family interview and physical ability - and then the social services decide the level of public health care we can use.

Watching the physical therapy was interesting. Okaasan is getting stronger and can stand and move from bed to chair better. Her walking (aided) is good. Turning so-so.
Turning is important, because that's what we need her to do if she goes to the toilet without us at home. We need her to be able to stand up from the bed, walk thru the kitchen, open the toilet door, go in, turn round and pull her clothing down - and then sit.
Of course we can put in more hand rails - but the basic ability needs to be there.

It isn't there yet. 
Another 2 weeks? I guess that's when we could try and stay at home and see how she is.
To see if we can work it all out.
Or not.

Tectonic shift in thinking

Okaasan's future may not be home with us.....

A shift has taken place in Dear Son's thinking. A huge shift. Tectonic plate size change in thinking.

He is now thinking and talking about a care home future for her.

I'm trying to be gently supportive, not pushing one view or another.

A few days ago we went to visit her at the physical therapy hospital. He'd visited alone a  day or two before and watched Okaasan's training - how far she could walk holding onto bars and how much her heart rate increased when she tried to use a walking frame. He came home fairly positive.

Our joint-visit on Friday. Okaasan was in her bedroom with the deaf roommate shouting annoyingly. We got her into a wheelchair an the three of us sat in the physical training room - watching other elderly people have their training regimes with balls and bars. Okaasan kept saying how being in this room was a first time for her...despite having been in the room doing the very same exercises just a few hours before.

We drank canned coffee and chatted.
Okaasan smelled bad...I knew a diaper change would be necessary.
Then she asked to go to the toilet.
We wheeled her to the toilet and the three of us went inside.

Dear Son was advising/helping Okaasan to stand and move from wheelchair to toilet seat.
Advising her how to move her legs so her body changed direction. She had no idea....
I was pulling down her pants and reaching back and between her legs to catch the heavily soiled diaper as her bum swayed near the toilet seat...managing to catch and lift out the diaper before she sat - and into a handy trash bag nearby.
Then I went to get a nurse to help with cleaning and re-diapering....

We stayed for an hour or so. Wheeled around the hospital looking at pictures. Left Okaasan joining others for dinner time near the TV.
We came away.....for our dinner and life.

Hmm...

I wondered. Could Okaasan come home at all soon, like this? Come home ever, like this?
She has been in diapers for 4 months now, mentally and physically she is used to that. This will be beyond "toilet accidents", to regular diaper changes....even if she decides and activates a toilet visit on her own....I am guessing there will be more diaper use. Much more.
Could she turn in the toilet? Our toilet at home? Would she understand HOW to walk in, turn round, take down her pants and then sit? Could she DO a toilet visit alone?
Could we leave her for more than an hour alone...?

These thoughts were in my mind. I talked to friends about my worries...and said to Dear Son that I still thought Okaasn's permanent return to life with us was only a 50% possibility.

And he agrees...thinks the percentage is larger - in the negative.
He doubts we and she can manage together at home. Even with day service 5 days a week.

I guess this IS the hoped for/expected result of putting her in this kind of hospital/home environment - thinking by the social worker to get the family and the aged person accustomed to the reality of care outside the home.

Dear Son said he is going to talk to the social worker this week.
He is starting to believe that Okaasan may be generally happier and safer in a care home....

If you've read this blog for a while, you'll understand what a change in thinking this is for him. From not wanting any outside help - to accepting and coming to the realization that the time for us being able to care for his mother alone is coming to a close.

A new chapter is ahead.
I am relieved. I think so. 
I can't see how it would be here...specially how it would be for me in winter alone with her. Impossible.

Black Sunday

Knackered.
Have to go to work today...and the next 5 days.
Spent a lot of emotional energy yesterday...

We visited the hospital at lunchtime. While he parked the car and went on upstairs, I went to a local cafe to get a choice of coffee or a cocoa, and a nice cake for Okaasan. Try to take her something nice everytime.

A few minutes later I arrived in the ward room. Okaasan was the only patient - the other 3 bed were empty and clean.

And fury was in the air. She was NOT happy - she was angry - at everything we did or said. The fury. The aggression. Anger. Rudeness. Raw emotion sitting in a wheelchair.

DON'T sit there!
Don't move that chair!
Hmm. Coffee? Cocoa? Both.
Don't put your bag there.
Don't use that trash bin.

DON'T!
It's itchy on my back. What's this thing round my body. I want to go to the toilet. What's this. Don't.

Such a change. We'd left her Saturday afternoon all smiley and pleased to have seen us.
And come on Sunday to this.

I got riled up too. I couldn't help it.
Dear Son put a warning hand on my arm....I went to walk around the corridor with my coffee. I Reset and went back. 

DON'T walk around the hospital like that with a coffee cup!
DON'T put the lid there!

It's impossible to fully get over the shock of seeing someone so different. So much anger, where usually there is none. 

I left again. Blood boiling. Went to the toilets downstairs.
Came back.

She was talking about the itchy feeling of the corset and wanting to go to the toilet. Dear Son trying to explain that she couldn't GO to the toilet - she was wearing diapers and a urine tube and bag. Trying. Anger. Wanting to defecate. Badly.

We left her. Hoping that without us sitting by the bedside she would defecate. 

Stood in the rain in the parking area wondering what had hit us. Was she alone in the ward because she'd turned difficult and the nurses had moved other patients? Or was that just a coincidence of hospital admin?

We went to lunch. Tried to Reset. Exhausted. Dear Son had a whole thing about whether he was bike taxi working or not, whether the rain would stop.

One hour later we went back to the hospital.

She was in bed. The anger was gone. Replaced with whimpering sadness and irritation about the itchy feeling.

I'd bought a back scratcher. While DS  paced the room I sat at the bedside and tried to scratch inside the back of the corset. Okaasan endlessly telling me to take it off and check her skin for redmarks. I sat and talked comforting, kind words. On and on....she calmed.
I got one of her magazines and held it over the bed, showing her pictures of old Tokyo - asking her about places in the city. Scratching. Talking. Calming.

It was a relief. She had returned. That other person, the anger person. Gone.
I guess everybody who lives with dementia in the family has this experience? Seeing a whole OTHER side to the person they know? It's amazing. Scary and confusing.

20 minutes later DS wandered off to the toilet. Okaasan heard the word "toilet" and started getting agitated. Flapping her hands on the bed, whimpering...stress building.

I asked the nurses to come and a team of three went into action behind the curtains to help Okaasan. We stood in the corridor and wondered when this will all come right...when will she be able to come home?

She HAS started physical therapy. End of last week. She had talked happily about the nice therapist. Obviously a positive experience. Will she be able to stand and start walking this coming week? 

We left. In the rain. Exhausted by the two hospital visits.
Went home to finish cleaning Okaasan's room and clothes. Watched a video. Ate steak for dinner.

And now a week of work begins.

Ho hum.

Diapered.

I just diapered my mother-in-law.
And I'm feeling flushed with success.

I caught her just as she was leaving the toilet early morning. I followed her back into her room and showed her the new diapers.

"Maybe it's a good time to change these?"
"Why? Did I wet myself? I didn't, did I?"
"I don't know, but you wear these now in case you do - and you haven't changed for a few days. maybe fresh is nicer?"

I pulled up a chair, sat her on it, gently took off her pajamas...and pants (Oh...NOT diapers, that means there are soiled diapers somewhere in the room...) and helped her put on the fresh diapers.

"Did I wet myself? I don't think so?" she actually fingered the crotch area of her pants and showed it to me......like kids who pick up interesting bits of sick seconds after vomiting....YUK

But success.

She is just more passive now. Really. If you talk her gently into an action, as though this is a normal thing, we always do etc etc...and then she just follows.

Busy week at work - knee getting better - holding it all together with the help of convenience store food. 

But thought I'd share that big success with you! Cos I know you were waiting to hear...

Signs of the future

It says "Toilet". It's on the kitchen door. And there are two others: on the door from Okaasan's room to the kitchen, and on the toilet door.

We hope that helps her. Helps her to FIND the toilet, helps her to remember that is why she stood up, helps her to remember that maybe she should go to the toilet.

All of that.

Our new norm.

I hope she will leave the signs in place. A year or two ago we tried to put  signs on her clothes drawers to help her find things, but she ripped them all down within 24 hours.

This week we did a family trip to the local city office to get our My Number ID cards. Japan has introduced these cards, which has everyone in the country befuddled as to their usage. So, everytime Okaasanb asked us: "Why am I here? What should I do?" we were as in the dark as she. Just waited for the counter staff to call us and exchange bits of paper for other bits of paper and card.

Day Service also started. Two hours on a Friday. Dear Son and I went out to dinner together to leave the care worker alone with Okaasan. Apparently she went out willingly.

He started ski work today. Next week more. I am about  to have crazy December of end of year parties and Christmas/New Year preparations....into winter HERE WE GO!

Where IS the toilet?

Okaasan came home yesterday evening all happy from the hair salon.
New cut and perm. Looked good.
Dear Son had taken her to the salon thru an amazing November record-breaking 23cm of snow and then picked her up two hours later and brought her home.
I welcomed them in the hallway and went with Okaasan into her room - hanging up her coat, switching on the TV etc.

"I want to go to the toilet. Where is the toilet?" came the voice behind me.
She looked around the room and the kitchen beyond. The living space she has been in every day for the past 8 years...and had no idea where the toilet might have flitted to at the moment.

Oh god. It was amazing. 

I showed her. Go thru this door into the kitchen, then left into the hallway and that door in front of you is - as it has been for 8 years - the toilet.

Amazing. These moments of dementia in action just blow my mind.

Maybe. Just maybe she was confused about the place because I was talking about her hair cut and how nice it was. maybe she thought this was still the hair salon and didn't know where the toilet was.

But all around her was her own room. Her own clothes and Tv etc.

It was pretty amazing. And scary.

Time for signs to the toilet???

Recently she has soiled her clothes/pajamas more. We always assume it is because she can't stand up quick enough to reach the toilet. But maybe it is worse. maybe she stands and looks at the two doors in her room - and doesn't know where the toilet is?

A winter of Okaasaning - which I now make as a new verb - it has begun.

#$%* Happens

Hope you're not eating breakfast.

Cos it's unhealthy for you to eat breakfast and surf the Internet at the same time!

And you might find topics like this.

Found a nasty little parcel in Okaasan's room yesterday.
Casually left next to the sofa and the recycle newspaper box. A supermarket flyer crumpled up. ThankGOODNESS I didn't grab it.
Something brown and squishy inside.

Set me off on a hunt for the pants or pajamas that she'd been wearing at the time. Soon located the nice flowery jimjams I bought her this spring. Squishy and probably stained beyond rescue.

Sigh.
These "toilet accidents" at more than before. We use to find them in winter, or when her legs painful. Times when maybe she hadn't got to the toilet in time.
DS also has a theory that sushi is to blame. He's stopped taking her to sushi or buying it for meals at home. I think that's sad - she loves sushi and sashimi. A little is ok. But gorging out at a revolving sushi bar is probably a bad idea.
Maybe slightly old food in the fridge is also a bad idea?

Old people and their digestion? Or something more? We'll never know if it is something medically wrong. Cos she will never go to a doctor.

Anyway. About once a week now.

Can't talk to her about it. Tried that in the past. She doesn't remember the incident afterward.
Could try putting a toilet style trash box by the door in her room? Would that be enough of an association to get her to put soiled things there?

Onwards thinking.

Peaceful Sunday.
I got her into a bath, gave her lunch and then went out myself for a long walk and a movie.

Came home with a small amount of raw fish and tried to cook the burdock and carrot dish. It didn't look so good and Okaasan told me I'd done it wrong - I used to flare up at her advice. Now I just let it was over me and nod, and aplogise for being a bad cook. I have learned to control my flare up feelings over the last few years!
Hey....
If I am home early enough tonight I might ask HER to show me how to cook it.
Might.
Or I might come in thru the front door, pour myself some Chardonnay and watch TV.

Well...not off the carpet 100% yet.

We are still locked in a dance of toilet/walking/denial conversations.
And on-going carpet dwelling.

Okaasan IS a whole lot better than last week.
She sits upright and watches TV, she eats a little food.
She has walked herself to the toilet....twice in the past 2 days.
The rest has been...predictably a carpet and pajamas and diapers situation.
She made it to the kitchen table...once.

So, you can see - we aren't off and walking yet.

Trying to persuade/recommend/encourage her to wear the diapers - or even the sanitary towel-like pads is a struggle. She constantly claims to be on the verge of going to the toilet room herself. But usually doesn't. Her focus goes back to the TV, or if she is trying to actually move she will reach one stage of the journey from carpet to toilet - and get stuck there, for an hour or more....one knee off the carpet, sitting on the side chair....

Hard.
The moaning/screaming painfest on the carpet was easier to 'nurse' - but emotionally/physically tougher for us.
Now, because she is mentally more together, everything we try to help her with has to be discussed WITH her and reasoned thru again and again...repeating the messages in loops.

He and I did escape for a few hours yesterday afternoon and early evening - to meet friends in the beer festival downtown. Then back by 7 pm to feed Okaasan.
She was aiming to stand and get to the kitchen table all the time the food was being prepared. So she got up off the carpet. To the sofa. To the side chair.
When the food was ready and on the table - she was still 4 meters away on the side chair in her room. She examines her feet and legs as if they are a disconnected from herself and she is waiting for them to kick into action...as if somebody somewhere will throw a switch and she will be mobile...
The food was in the bowl all hot and waiting. That 4 meters gap looked undoable. She refused to use a stick or a supporting arm from a caring family member.

We gave her a small bowl of pasta at that half way station.
Then she slipped back down into the carpet nest.

And so it goes. I'm home today.
Next week - if he and I are working - we'll have to leave food for her within reach of the carpet nest.

Ah. The carpet.
I am trying to clean it up. Hard with her in situ of course.
I've got towels and newspapers down to mop up pee, I am trying to dry it out - with a hair dryer!!! And the blanket that covers the kotastsu heated table is damp too.....

Yuk. Yuk

I am doing mopping up operations in front of Okaasan - because it's a way of trying to enforce the idea that "you DON'T always get to the toilet, and it IS embarrassing, but I'm ok with it, but it WOULD be helpful if you wore the diapers or pads"...trying...trying to get that message across.

Of course she doesn't think that sitting on a pee-soaked carpet is a good thing. Every good-housewife cell in her brain tells her that. But there's a vast disconnect between knowing that and agreeing to help us with that situation.

Oh, and it's all in a second language for me.
:-))

Ho hum.

Meanwhile...just to add spice....one cat has brought home TWO still-alive catches this morning!
The bird that was in this computer room - I managed to let escape thru open windows.
The baby rat/large field mouse is still lurking somewhere in the living room.....last seen shortly after 5 am behind the CD collection.

Ahhh...the weekend. So relaxing.

Carpet dwelling

I've just changed my mother-in-law's diapers and given her lower body a towel wash.
I think we've pretty much crossed all the personal boundaries that exist.

Yesterday was more and more of Okaasan prone on the carpet of her room, curled up under a blanket, or sitting, or propped up on one arm - looking at her legs and rubbing her arm. Glancing a little at the TV. Drinking a little water, eating a little rice and soup. At some points stretched out face down on the carpet, trying to push herself up on her arms like a baby - and lacking the strength to do it. Falling back and staying there for another 20 mins, off and on.....
She doesn't have the power to drag herself, or the understanding how to move her body to another part of the carpet using her buttocks or rolling. 
He stayed home all day, I came home three times between classes. We carried her to the toilet 3 times in the morning using the chair.
But in the afternoon she refused help and said:"I can go there myself" or even "It's ok, I went to the toilet!" - all the time prone or sitting in the same 1 meter of carpet space, at slightly different angles.
She slept deeply.

And now, Thursday morning a soaked and smelly carpet and a full diaper to change. Trying to get her to roll her body a little so I could tug the diaper out from under her, washing her and then gently easing clean diapers over her feet and up her legs.
The breakthru is that she accepted wearing diapers. She allows us to put them on and take them off. It's embarrassing, but at some level she knows it is necessary.

And he says we will wait "a few days".
In the past when she falls or has self-diagnosed "rheumatism" she has laid low for a few days, hardly eating etc - and then gradually got better. Last summer she went from unable to walk to being able to stand herself, and then crawl around the kitchen table....and then, after weeks and weeks - to recovery.

So he is prepared to wait. Because he too believes that if you wait, the body will cure itself.

I know, I know, I know.....

I will give him "a few days"? Play it his way? Or will I just call the day service people? Call the ambulance? 
If she is still almost immobile on the same spot of the carpet...by Monday?
These are questions I don't know the answer to myself. As the initial crisis of Tuesday night has passed, we have entered a holding pattern which is kind of manageable. She MAY have some internal injury we don't know about, but she is marginally brighter that yesterday and can move her left arm around - but can't put weight on it.
So a holding pattern.
Trying to keep her clean and dry on her lower body, trying to keep her warm and fed. Trying to keep her feeling positive.

So strange that this has all come out of the blue.
Tuesday morning I got her to have a bath, she ate lunch and at 3 pm set out with a ring to sell it....took herself on the subway downtown.  By 6 pm she was holed up in her favorite coffee shop with pain and fear.

NV or not to be....

The one toilet accident last Friday become two - another on Saturday.

The washed, dried carpet tile spent about 3 hours back in its place - and then was hauled off into the bathroom again for cleaning. A new toilet mat hadn't even made its appearance.

Okaasan denied she had any soiled clothes in her room and Dear Son accepted her denial.
But when she went to the toilet again a few hours later I ran into her room and found it all folded up in a newspaper, nesting on top of the spare room heater.

Grim.
Did Okaasan have the dreaded Norovirus that is common at the moment among school kids and nursing home residents? Was it just forgetting to go to the toilet in time - twice in 72 hours?
She hadn't eaten anything unusual or a large amount.

We waited another 24 hours.
Okaasan seemed "down" over the weekend. Ate silently, didn't speak much. Shuffling around under a cloud. Was that the continuing bad feeling after two toilet accidents, or was it a worsening condition?

Okaasan with Norovirus would be haaaaard. Trying to do all the cleaning and keeping things hygienic, when she wouldn't remember the details and probably resent constant checking. Only bright spot would be she'd probably stop eating.

By Sunday night she seemed a little brighter. Sunday had passed with no accidents.
She seemed back on track.
Relief!

I told day center on Tuesday, felt it was only fair.
They wanted to know if she had had or still had a temperature. Of course they can't risk having a virus-carrier in the center. I hadn't actually checked that, of course. All I could say was that the toilet problems appeared to have gone. And she seemed fine again.
They accepted her to go.

* Bathroom.
Dear Son got Okaasan to have a bath after the 2nd accident. But she couldn't get UP from the little shower seat. We went and bought a much higher seat for her...and for us :-) This time he was right - she was in the shower for ages and he actually opened the door and went in and helped her stand up. Recently when she was in the bathroom for ages I called to her from outside the door - to check for signs of life - but I didn't actually open the door and go in. I should have done.

Dementia views

HI!
A few hours from now I will be taking Level 4 of the Japanese Language Proficiency Test at Hokkaido University. Trying to improve my language skills so I can be a volunteer at the 2020 Tokyo Olympics.

So, I should be studying. Cramming. Trying to get my ga's, ni's, kara's in order.

But I'm here instead, cos it's more relaxing. :-)

Was my last posting a whole week ago? Where did all that time go?

What on earth happened in the past week?

Right......it was Dear Son's birthday! He became fifty five years old. Absolutely ancient. I took him out for cheese fondue and red wine. 

What else? I was still recovering from the Tokyo lurgy, so operating on half energy for much of the week. I still have a pile of stuff on the table that I took out of my handbag pre-Tokyo - haven't had the energy/interest in putting it all back in there again.

I'm getting like Okaasan.

Oh! And blog reader K-san and her family came to stay!!! Via Couch Surfing, the people to people homestay website. I think she looked on CS and suddenly realised the British woman in that host profile - is the same woman living with that old lady and cooking tofu in a million different ways. We had a sushi dinner out with her and her husband and children, but not really enough time to chat about Okaasan and Me and our lives. But still, nice to know there are real people out there reading these ramblings and enjoying them.

Okaasan good this week. She went to day care twice - although stuck again on the thought: "I go there twice a week? Really? twice a week?", but she got up when reminded and got ready and went. Apparently she saw "someone" at the front door and actually greeted them....although there was nobody there because the driver and Dear Son were chatting by the car.

Day center recently have asked us to send Okaasan along with an extra pair of black trousers, because the toilet accidents are more frequent and they need to change her into clean clothes. At first we were handing over the extra clothes surreptitiously to the pick-up driver. Now we just do it directly and if Okaasan asks we say "clothes for after your bath", and she accepts it. I went and bought another pair of black trousers, so there are 4 in rotation - worn/being cleaned/extra/lurking in her room. The night before going to Tokyo I was sewing the hem of the new pair - my duties as Oyomesan :-)

Experts talking dementia and home care.

Last week NHK Tv broadcast a special program about dementia and care in the family. A retired producer had videotaped his mother over many years at home, from the start of her dementia to the sad, last gasps in hospital as she died aged 99. 

Many of my students - middle aged and elderly people - watched it and commented on it. We recorded it and finally got to watch it last night. Dear Son and I.

Oh, the familiar scenes.

The Okaasan in the program had lived alone for many years after her husband died, independent and healthy. But a good neighbor noticed strange behavior first about money management and housekeeping, and less and less cooking.

It sounded so familiar.

Then there was a period when the family were pre-cooking trays of food and leaving How to Cook in the Microwave Oven instructions, and going in to clean and sort out a messy house.

Then there were toilet accidents. Shit everywhere. And the Okaasan very surprised about it - reminded me of my conversations here last year? with Okaasan about soiled underwear.

And then loss of mobility after a stay in hospital, and more toilet accidents, and confusion...and feeding, and dressing.....and decline.

Of course, there were funny and happy scenes as the mother and son laughed and talked. The studio experts said how important it was to have routine and normal family life.

The producer and his mum.

As the program was finishing I glanced at Dear Son and realized: he was crying.

I comforted him and reassured him we were doing great. HE is doing great. These years now are forming a bond so that when we have the hard times ahead with Okaasan care, she will trust us and we will support eachother. It's all ok.

One of my students who commented on this program is in her late 70s. Fiercely independent and able.

"All this stuff now about dementia being a sickness, you know...years ago nobody said that. It was just accepted as one of the things about getting older, so people just helped and understood and did what they could...it's how we should think..."

I agree with her. To an extent. It is just a stage of getting older, but it is also more than that. The person with dementia is kind of protected within the sickness, they don't know the limits of their life - that they haven't eaten, or brushed their teeth or hair, that outside is cold and not T-shirt weather, that they have bought 5 pots of the same yogurt, that there is rotting food under the newspaper, that there IS no man standing outside the door at night.....for the family/carers these are the things to help with and gently guide around.

The TV program reminded me what may be ahead for us. The toilet accidents, for sure. Now Okaasan regularly pisses in her multi-layer pants, and about once or twice a week there is shit on the toilet floor or in her clothes. She tries to clean herself up, she hides the soiled clothes in her room. And forgets them. I go in and find them and wash or throw them away.

I think we are nearing the time to get some kind of sleeping mat or sheet - so that we can keep her sleeping and sitting area clean.

Okaasan sleeps on the floor between the sofa and the heated table, under the heater blanket. Under her body is just carpet and wood flooring, and usually a towel.

We gave her a futon when she first came here, but she has never, ever used it. She watches TV in the evening, sitting on the floor under the table blanket. And then sleeps there too. A few times she sleeps on the sofa. Usually the floor - she is Japanese, afterall.

But the toilet accidents are increasing and a easy-to-clean mat would be a good idea...

She hasn't tried to cook (heat rice/egg/water) in  a pan for many months. She hardly washes her own clothes anymore.

But she dresses herself, usually successfully. She keeps some kind of order on her table. She (eventually) puts away piles of washed clothes and she takes part in conversations.

Next week? December 3rd maybe? It is FIVE years since Okaasan came to live with us. Five years since this blog started.

We have done so much to make Okaasan's life better. If she was still living alone in her home in Saitama I think her dementia would be much worse. Actually I think she would be incapable of reason by now. So we have extended her happy, calm life by our care.

I thought - naively - she may live only 3 or 4 years when she first came....

In the NHK program that lady lived to be 99!

Okaasan is 83 now. Plenty more years left in her.

I think I'll be blogging for a while yet....

now....what shall I do with the rest of my Sunday???

Hmm.......

Reality...cleans.

So, there you are.
Sitting at your computer. Hi, there!
Yes, Blogger now has spy camera technology - I can see you - sitting there with that cup of wine to hand, reading the blog of that British woman in Japan with the mother-in-law and she has dementia..

In a few minutes from now one of your family members will come into the room, armed with rubber gloves, a bucket of water and some towels and start talking about cleaning "that stain on the tatami mat".
And they will start cleaning away at a brown stain on the floor, and you won't know why.

And they will talk about you had a little diarrhea this week and there was a little mess, and they will continue cleaning.
And you'll stand there and wonder why, and remember nothing about having an upset stomach last week.
Even...when they show you some of your pants...all very dirty.....
You won't know WHAT they are talking about.

You'll be gobsmacked, won't you?

Okaasan was.

I HAD to go in openly this morning and do it.
He is away for 3 days with the car again, so Okaasan probably won't go out...and really that kind of stain can't be left for many more days....
I wondered about making up some story about some OTHER kind of stain. But the trouble is, I don't have a routine of going into Okaasan's room and cleaning WHILE she is there...so anything I did was going to be strange.
Finally I decided not to lie and layer on the deceptions: just do it openly and honestly and non-fussily, like a nurse. No nonsence practical.

Of course Okaasan had NO memory of " a bit of an upset stomach last week", and even when I showed her the soiled pants (which I fished out of the cat toilet box trash bin) she had no idea.

LUCKILY the stain seems to have...errr...soaked thru the tatami mat, so with a bit of water and towel you can't see much now.

I sandwiched this experience for Okaasan with nice stuff; gave her new, winter pajamas last night - and then tonight bought her favorite classic sushi. I just hope the nice experiences will counter out the confusion.....

Oh, sorry - you should go now - I think that family member is coming in to tell you something....

I keep forgetting things...

Okaasan IS aware of her mental condition, for sure - but not to the extent of it.


"I keep forgetting things" she said last night, as she was reading about an exercise class for oldies in the community newsletter.
The class info listed lots of good reasons why joining the class is good for you: and one of them was of course "to delay the onset of dementia".
I'd got Okaasan to help me read it over KFC dinner - hoping of course that SHE might feel interested enough to go to the community center and give it a go.


But seconds after commenting on her own forgetfullness, she counter-acted it swiftly with:
"...but I'm not that bad, I don't need this kind of class because I go walking downtown every day!".


I gently commented that the "every day" was more like "3 times a week" in winter....between long spells of sitting in front of the TV...but...but...


Complete Truthfulness is never going to happen in this family. It's a Japanese family and brushing stuff under the carpet is in the DNA. I sometimes read the blogs of dementia sufferers - usually Americans, who in a far more direct and pro-active society are fully aware of their own condition and doing what they can to counter-act it.


Here, just the gentle comment stage....


Okaasan wasn't mentally great at dinner last night: rambling on and on in a hamster wheel story - it started out as I-don't-eat-breakfast-Nishi-guru-told-me...and somehow got stuck on the school teacher who had first introduced her to Nishi-Guru - and then she couldn't escape the story - told me about 10 times about how he'd come to the house to discuss which university the older son should apply for, and the difference between the universities, and how the teacher didn't know, and how he'd come to the house to discuss.......and how...and how...


on and on and on.


Rambling meant not eating too, so finally I had to stand up and clear my plates and start washing up to get her to stop talking and finish her dinner.


My students and friends who occasionally meet Okaasan say: "Oh she's sweet, she seems ok!"...because Okaasan is able to do polite chit-chat for 5 or 10 mins. I wish people could see her real conversation ability...this endless story hamster wheels, how a sentence loops back on the one before - with no recollection that she used the exact same words 30 seconds or 50 seconds earlier.


Yu and I are in this together, we can suffer thru these conversations and insert the required responses. Carers who are alone with dementia sufferers have NO escape.


*  Cup of Water or Not? Haven't decided yet. Thankyou to everyone for comments on blog and off it. 
I do kind of agree that deception isn't a healthy thing. But, having the real world example of WHY she needs to start using incontinent supports would be so, SO useful.
This morning the toilet mat was soiled again...so I shall try and get into her room and find the soiled pajamas/pants etc and maybe use that as my lead-in.
I've got the pink trash box with it's trash bag, I've got the ST pads, and I've got the diapers.
All I need is the lead-in and a VAST amount of courage to go in and have the conversation......

I hate F#$!=ing Family Trips.

Hate 'em.
I think I had the "Family Group Fun" gene removed at birth because the whole let's-go-out-together-and-do-something-together-even-it-isn't-so-fun thing....bores me F######ing stupid!!!!


How do people do years and years of this?
Like those Hollywood movies about businesspeople who inherit a baby/toddler/teenager and don't know what to do - me and Family Trips. Oh God.
I'm an only child with older, working parents - I enjoy doing things on my own or with one other person. If there is a problem you can ammend the plans and there is a 100% or 50% chance you can do what you want.
In a family group you are stuck in not-fun have-to hell.


But it all started ok.
I got home mid-afternoon to water garden, pack supermarket food bits into the backpack, fold up the garden chair, prep Okaasan, play with cats etc etc.

Even managed to have a Moment in Memory of My Dad: a student had given me a can of a drink called Pim's, it's a popular summer party drink in the UK and as I drank it I remembered that my Dad loved the stuff....so I had a little quiet Dad Memory Moment in the afternoon sunshine in the garden.


Anyway. Oyomesan On Duty.
5.30 pm got Okaasan ready to go - made sure she had the right things to take with her and left unnecessary stuff at home. Walked with her to the subway station. Crowds of people starting to gather, girls in yukata summer kimono - the clip on sash (obi) popped off one girl and Okaasan scurried to help her put it back on which was sweet.
Rode the subway into town - Okaasan got the old people's seat in the corner and I could stand nearby with the camping chairs and backpack of food. The pink flowery yukata-wearing girl next to me..was actually a boy with a blonde wig which kept slipping.


At the Susukino subway station Yujiro met us with his bike taxi and took us to the riverside park - fun actually to ride in the bike taxi and wave to people. Okaasan all giggly.


All good.

Saki, Yoko, Kevin and Ikuko...Okaasan and Yujiro behind.

Then....6.20 pm Yujiro dropped us in the park and went off to return his taxi to the garage. I set us up on a bench by the river, some friends found us and came to say hello, and we watched the crowds gather and the kids playing in the water.

And waited.
And waited.


Yujiro took for bloody ever to come back....30 minutes or more I sat there trying to chat Okaasan along about kids and water and fireworks and yukata...and yes...many, many, many  times the story of how she and a friend had stayed in the Tobu Hotel when they came to Sapporo.
Finally he came back. And then - he started talking about going to buy beer somewhere - NO!!!!!!!! DON'T leave me again!! I'll get the beer for you, YOU sit here with your mother....pleeeeeeese.
So he did.
I got beer and came back. We opened up the supermarket packs of food and ate.
And waited some more. 
I stayed in the Tobu Hotel when I came to Sapporo.


The Fireworks Display was due to start at 7.45 pm....we sat there for ages waiting...
At 7.30 pm Okaasan asked: "Are the fireworks finished then?"
??????????????????????????????????????????????????????????????
To all the friends and students who have recently said to me: "Oh, but Okaasan looks so normal!"...this is the reality - Okaasan had NO idea sitting there in the dusk with us in a crowded park by the river...have I watched fireworks yet or not??? She had no memory of what had happened there.


Finally they started. 
And we couldn't see the F#)&$"!?*`##ing things.
Hidden behind buildings.
Don't know why. Many more high buildings in Sapporo now? Less money spent on big fireworks that can be seen from downtown? The Lord Almighty determined to F#$( with me?
Our friends disappeared in the crowds to get a better view, everyone got up and crossed the big road to get a better view...we kept moving the camping chairs and Okaasan .....moving...moving..
Finally watched the display through the streetsigns and electricity cables near a road packed with crawling cars....a complete failure as a firework watching experience.


And Okaasan shat her pants.
I could smell it and there was a stain on the camping chair.
Even though we kept pointing out the toilets - because this was afterall why we had chosen this place for the evening - she still shat her pants.


F!$&()?*`=)'(%"!"ing Family Trips.


I hate 'em.

Happy Family Trip to the Fireworks...or Don't Believe the Happy Smiley Faces in Photographs Because It Ain't True.

No Rainy Season.

"...Hokkaido lacks a rainy season and is spared most of the typhoons that ravage the rest of Japan."


(Hiking Japan website).


Hmm.. Maybe time to update the tourist blurb?


Just had 24 hours of non-stop something wet falling out of the sky. Obviously NOt rain. Not sure what.


We stayed home all day watching TV and showing eachother funny YouTube videos. There are many bad things about the Internet, but for those moments in conversation when you need a fact or a picture - wonderful -....


Look! The coach of the Swedish  women's soccer team looks like....Boris Becker!


* Look! Here is that Japanese men dance group doing their robot walks in New York.


* Look! Here is a 1930's map of Sapporo that shows our area as seriously blank countryside.


And still that wet stuff fell from the sky.
The cats kept going to the front door to look, and then came back upstairs and paced up and down.
Okaasan snoozed by the TV.


At lunchtime Yujiro checked she wanted to eat some lunch.
No....I had an upset stomach last night while I was sleeping, "toilet accident" in my pants over there - NO ! No! Don't clear it away, i'll 
do it later. I shouldn't eat any food.


So she didn't. And I made a mental note to go into her room as soon as possible and hunt down the soiled pants. Yujiro thinks they are under a newspaper by the window.


Of course it's gross that I have to go hunting for my boyfriend's mother's dirty underwear...but it is also good that she told him about this...some kind of progress on the trust levels. I guess.


We took Okaasan out in the evening to a local noodle restaurant, just to get her UP off the carpet and AWAY from the TV for an hour.


And still that stuff fell from the sky.


*  Only exciting news: I made application on the ticket agency webbsite for London Olympic tickets...on 14 different days! Only Athletics and Gymnastics. No chance at all really. But giving myself 14 chances. If ALL my applications are successful I may have to sell my soul and become a Susukino hostess to pay for it all.




I think the typeface here is very strange....I tried to copy and paste the website quote at the top and it's buggered up the whole page.
Hope it's legible.

To hula or no?

Hula....here we go again.


Should Okaasan go or not? Hula Performance Day is tomorrow.
This time her hula class performance day starts at 11 am and goes on ALL day until 8 pm! Hours and hours of practice and lunch and chat and make up and hairstyling and performance and chat at one of the civic centres on Sapporo.


Yujiro's decided that it would be too long for Okaasan and that he won't talk about it and hope she had forgotten. Just let her stay home and have an ordinary day.
He argues that she would worry about toilet control, so she wouldn't eat all day...and just get tired and confused with the new dance steps etc etc.


So. I am under orders to Not Talk About Hula.
Easy enough, cos I am GOING AWAY FOR A WEEKEND!!!!!


But I do wonder...when Okaasan goes to hula class next week and all her classmates are talking excitedly about their performance day...how will SHE feel when she realizes she didn't go to it?
Probably come home and kill her Oyomesan on the kitchen floor with a Japanese tea whisk thingy.


Oh well - his decision about his mum. Out of my hands.


I am off meanwhile on a train tomorrow a few hours south to Hakodate to get a rental car and drive to the historic town of Esashi, stay at a lake resort in a cheapo guest house and then drive to Esan on the coast to see the wild azalea...


so I am OUTTA here!

Mother's Day

This is my mother, Eve.
Today is Mother's day in Japan and the US (in the UK, confusingly, it usually March or April).

My mum died in 1996 of myeloma, a cancer of the plasma cells. I'd just arrived in Sapporo to start work at a cult-like English school and one June morning my step-mother and father called to tell me that mum had died in hospital after 2 years of illness.
She had fallen down while walking a few years before, then later doctors found a big part of her skull and hip bone was soft and spongy...and her bones and blood got worse and worse.

Mum was a writer, editor and graphic designer. She wrote handicraft books and edited the sewing section of a woman's magazine.
She was an awesome cook and gardener, loved cats and wine and mystery novels and Scrabble. She was one classy dresser, and never went out without make-up and carefully co-ordinated clothes.
Mum was bossy and emotional, laughing and argumentative. Married twice, and one daughter.

Now I live with HIS mother, to me she is just an old lady we have to care for - but I TRY to remember that for him she is mum...not always a source of trouble, but also lots of positive shared-memory things. I try. Not always very successful. :-))

*** My current "mother"....Yesterday was one unexpected sharing moment with Okaasan; she actually TOLD me she was having toilet problems! Very surprising.
I walked into the kitchen and found her making tea and looking a bit distressed. She told me she had constipation and was getting tired sitting in the toilet. I made her filter coffee and told her (truthfully) that I've had this problem all my life. So I gave her two cups of filter coffee and hoped that did the trick - it always does for me.

I wondered too about the diet we give her, are there actually enough vegetables and fruit? Maybe too often in our meal times "vegetable" means salad, because it is easy. But a few bits of lettuce and stuff isn't a lot of roughage and Okaasan doesn't eat so much anyway. She eats rice, soup and the tofu/fish part with pickles.
Sometimes she buys apples ( only green are deemed good enough to eat), but she often forgets them after a day or two and I end up eating them instead.

Anyway - as luck would have it, I was shopping yesterday at the cheap and great vegetable shop so I bought up a load of stuff and did roast veggies with garlic and rosemary for dinner, with turnip leaves as a side dish etc - so we ALL got a good shot of veggies yesterday.

But interesting that Okaasan told me about her toilet problems. It was a good personal topic sharing-moment and made me wonder whether I CAN broach the topic of diaper pads with her?

Hmmmm.....

Talking toilet.

No - not a Japanese Super Loo that chats while you squat..although I expect that exists somewhere.

He and I - sitting talking about "What to do with Okaasan's toilet situation?"
Strange conversation to be having.
Prompted by yet another "accident" on the toilet floor mat last night. I was in the bathroom brushing my teeth and I could hear Okaasan taking a looong time in the toilet and using up loads of paper...I found it this morning...the mat anyway...haven't found the clothes yet because we can't get into her room while she is there.

So. What to do?
This is going beyond the occasional accident that Yujiro could explain away by saying Okaasan had accidents when she couldn't stand up and walk to the toilet in time.
From Internet searches I am guessing we have two problems; a) elderly people lose power in the bowel muscles and the shit becomes softer and b) dementia sufferers don't remember and act on the "must go to the toilet soon urge".

It's time to move onto diapers - called rehabili  (rehabilitation) pads in Japan - and a special trash box in the toilet and her room so we can throw away the soiled pads easily.

But how to approach this topic with her?

I am all for getting the nurse at the health check hospital to do it in May. Maybe send a letter to the hospital now outlining the situation and asking them to have a private, gentle chat with Okaasan when she goes for the free health check. Then having the diapers and trash boxes in place. Let the professionals give Okaasan some semblance of privacy on the matter.

Yujiro thinks HE can talk to Okaasan about this topic and suggest the time has come for diapers and toilet trash box etc. He looks pretty depressed about it, as you can imagine - it won't be an easy conversation to have with your own mother.

I feel like I'm trying to a balancing act: trying to support him in this new strange role in his life, but trying to push him to do what I feel is best for all of us. I WANT the outside world (doctor/health center/care people) to know about Okaasan and our situation - but Yujiro wants to take care of it all himself....for love/guilt/pride reasons?

And so. aghhhh...............

Whatever we do it'll probably have to wait a while; until we've got the Fallen Out Tooth situation dealt with. I made an appointment for Okaasan for next Monday afternoon and prepped my dentist about her aversion to modern/Western medicine ideas....so we'll see if we can get her to go to THAT first.
Yujiro will be working as a cycle taxi driver - so it'll be my responsibility to get her ready and out to the dentist.
She seems fine - yesterday she actually went downtown to meet Yujiro (he'd forgotten to give her money for lunch) and she ate dinner with us in the evening, seemed a bit quiet...but basically ok.
The dentist visit isn't essential of course - but if the tooth has fallen out I am guessing the gum isn't healthy and there could easily be infection which will spread.

So, first Tooth....then we'll tackle Toilet.
Or Yujiro will. I feel a bit helpless - I don't have the language ability and I don't have the close relationship with Okaasan to be able to talk about such a personal topic with her.

Ability and Secrets.

Okaasan seems to rock from one extreme of ability to another - all in 24 hours.

Yesterday we were delighted to find that she'd decided to have lunch/looked in the fridge for food/chosen some appropriate food/heated it up/served it to herself.

Yujiro was home for another 24 hours between jobs and he and I had been out doing errands. We rushed back at 11.30 am to do Okaasan's food. And found her in front of the Tv eating a bowl of rice--left-over-soup-fishy-snack-things.

Wonderful.

She also went out for a walk and came home on time. And did the washing up after the evening meal.

And then.

There was a large piece of shit on the toilet wall....we're not sure how it got there (did it fly out of her pants and she didn't notice it or forgot to do something about it?) and at dinner her conversation about Japanese machines and cars started well and got lost and confused in a myriad of started sentences and lost thoughts...something about how her father before the war had a Ford truck to deliver highclass wooden chests that were made in Kawagoe.
Something. She didn't seem to find the words..or the thoughts. And stopped and started. I didn't know whether to prompt or not. So I just smiled and made encouraging noises. But those parts of her brain that were meant to be supplying the vocabulary...just didn't.

All in one day.

Patches of ability.

Although - our delight at finding that she'd fed herself is an indication of how infrequently THAT happens. Usually she sits with the Tv...and maybe about 1 pm or 2 pm when she is hungry she wanders into the kitchen and has a yogurt or a boiled egg.
It's VERY rare for Okaasan to actually put together then elements of even a heated up meal in one saucepan.

Toilet: I talked to Yujiro about whether we should put a trash bin in the toilet with a label "Dirty Underwear for the Washing Machine". He thinks no - that she would think it was only for sanitary towels like a public toilet. I think it's worth a try. We can't talk directly to Okaasan about her double incontinence, but if there is a bin with a plastic bag next to the toilet I think she might be triggered into putting her soiled underwear into it.

It would be so much easier for her and for us: she wouldn't have to worry about it and do the handwashing. We wouldn't have to worry about it, clean it up and go hunting for it in her room.

I've heard and read that many dementia sufferers end up throwing their own shit around, smearing it behind the sofa, leaving it wrapped up in bits of paper around the room etc...and I am SO thankful we aren't at that stage yet with Okaasan. But almost every day now she is in the toilet with soiled pants and is faced with cleaning stuff off the floor, walls or bowl...and then disposing of the dirty clothing.
Her room stinks of stale urine as it is - I bought an air deodorizer yesterday and hid it away on the back of the (unused) House Shrine shelf in Okaasan's hardly used Japanese style room. The shit is rapidly becoming another problem.

And so.

Today I am busy helping Uni Spagetti move from her apartment and she gets ready to leave Japan next week. She has been such a good friend to me in the past 3 years - we met when my life was normal...and she was there through all the horrors....whose sofa will I cry on now???


Three friends are coming together to help her squeeze bits of life into boxes, send them off at the post office and clean the apartment - and we'll probably all come home with the contents of her food cupboards and fridge.


Just seeing her Moving Mess apartment yesterday afternoon reminded me so strongly of that 10 days in Dad and Jane's house last October....the boxes everywhere, the random bits of a life on the floor....aghhhhhh!!!


Talking of which: MY life from England is heading nearer and nearer. All 15 boxes of it. Plus a large bill. 
The shipping company and customs broker in Tokyo say my ship arrived, the pallet was unloaded into a warehouse and the customs check will be Tuesday next week.
And then it will all come to Sapporo!
Maybe arrive here next Sunday.


And. The bill for all of this? So far...


I paid the UK shipping company 600 UK pounds....now the Customs Broker is billing me for Y85,000 (which is about another 600 pounds)....and it still has to move from Tokyo Port to the Sapporo suburbs.
So: 1,200 pounds and counting....Y160,000 or so.......


Oh MY GOD. Nostalgia is expensive.
I have no children. Nobody but me is really interested in my photo albums....when I die in 30 years or so all this stuff will be trashed by someone.
But. It's my life and now it needs to all be here with me.


So much for simple Zen living.


I think it's time to move the cats OFF the bookshelves and get make space for my (expensive) memories.