Monday, 11 September 2017

Downhill...sharply

Okaasan's condition has deteriorated. No real clear reason why. Yet.

Since last week she has had a fever, not very high...but a change. The hospital but the physical training on hold, and she ate less....and stayed in bed.  quiet...

We spent 2 hours with her Sunday. Sitting at her bedside being chatty and gentle. She liked a dried persimmon fruit we took in and snacked away on it....but her body stayed curled up and facing away from us.
When she nurses brought the lunch tray, they tried to get her to straighten her legs...it was a big performance and she seemed to have pain in the right knee...but finally stretched both legs out.

She ate a bit. Tried to. Gripped the chopsticks and the spoon strongly...but almost fell asleep while feeding herself and spooned pudding everywhere...I tried to help by supporting the plate and putting food on the spoon...and trying to get the spoon near her mouth.

It was agonizing....slow...quiet and a big struggle.

I wondered: is the beginning of the end? She seemed exhausted by the smallest effort. The hospital had her on an IV drip the day before....the doctor couldn't find anything specially wrong with her leg. Worrying.

After a bit of lunch she did look at photo albums a little. Smiled a little. But very different.

Most worrying: a week now of no physical training...again...so all her muscles will get weak again.....just as we were seeing progress.

I suggested DS tae in music and headphones on some device, so she can listen to songs she likes. Watching Tv or a magazine seems too much effort.

Worrying.


Thursday, 7 September 2017

Walking...strolling...

Occasional updated blogging...sorry.

We visited Okaasan at hospital and saw her physical training session again. She was mentally and physically a little dull, but she could walk around the training room using a walker/stroller on wheels - but with the staff firmly holding the belt of her pajamas.
Not self standing and moving yet.
She and I paid a toilet visit, she was quicker about standing up from the wheelchair and moving to the toilet seat - but sat down half on and half off the seat! Noooooo! very dangerous. That is exactly how a fall happens.

She is happy though. Chats to us, drinks a can of coffee...looks at the newspaper a little.

Tomorrow she is having a dementia test at the hospital - I don't know what the test a week or two before was. Anyway - it all helps to assess what kind of help we can get, practically and financially.

Next week NEXT WEEK!!! I am going to the Uk for a 2 week holiday, so I doubt Okaasan will come home before or while I am away, which leaves her at the hospital until the end of September. It's a long long time since her fall in the kitchen in May.

The house selling is still on hold. Dear Son will try to apply to the court to become Legal Guardian for his mum.

And so. All of that.
Over and out.

Thursday, 31 August 2017

Missile approaching...


Not what you want to see on your breakfast Tv screen...missile course over where you live.

That's us, that big green island - Hokkaido, with the north Korean missile flying over Tuesday morning...actually flying about 3 hours south of here...

Dear Son and I were drinking coffee at 6 a,m and watching Kevin Spacey in House of Cards - where as US President he rips up democracy in Season 3 - when both our mobile phones started ringing and vibrating with government alarm systems.
Incoming missile. Take cover in a strong building or basement!!!!

I mean really. What would you do? 

Do you actually get up from the sofa, grab a cat and run for the nearest basement - in our case the local supermarket? 
We didn't. We sat watching TV and checking Facebook...cos that's what we do...

And then you go on the BBC website and send a Contact email so that later in the day a BBC journalist can contact you for a few words of "local British person talking about missiles"....I was in a webpage story and my voice and HORRIBLE LinkedIn photo was used on the lunchtime TV news....very strange to sit here listening on my phone and to hear the programme presenter say: "UN...President Trump....North Korea...Japan....Amanda Harlow in Hokkaido"....

You can read the BBC thing here :-)



Sunday, 27 August 2017

Festa!!!!

Here we are!
Okaasan and Me Festa! Festa!

The hospital annual summer festival for patients and families was a wonderful WONDERFUL event.

Big and well planned. Staff in festival jackets directing cars, manning game corners and food and performances. Lots of kids - lots of old people in wheelchairs - pajamas - festival coats - aloha shirts - music - balloons - food!
The physical training room transformed, corridors decorated.

We had a blast.

Dear Son was on his last day of bike taxi working with the special customer, so I was the family member with Okaasan for this event and she and I ate our way thru octopus balls, friend noodles and shaved ice with syrup - had our picture taken, pulled lucky strings and chatted to lots of friendly staff and volunteers.

Okaasan had a good time, watching the kids play with their balloons and laughing and smiling. She kept asking me WHEN the commemoration photograph had been taken - "was this a long time ago?"..."No, it was 3 mins, 10 mins, 20 mins 1 hour ago...look you and I are wearing the same T shirts now!"... 

After 4 months of hospitals and stress, it was nice to do something normal and fun with her.  
Can she come home soon? I guess....one nurse said she is now walking with a frame....

We had a toilet visit together, and I took off her dirty diapers, but had to get a nurse to help with putting on fresh diapers...it's strange this - to change from being the friendly family member to saying "sit down, do this, go here, lift your bum, let's change these"....crossing back and forth over the personal line .

Anyway. A good day.

After the festival I went for a long walk by the river, came home and watched TV...went out with Dear Son for dinner, ate Christmas Cake and ice cream - a present from a British friend...it was a good day.


Saturday, 26 August 2017


Ahhh...who IS that sweet little girl?

All innocent and charming. With her daddy in a garden in London, UK a long, long time ago.
One day young girl you'll grow up and move to a country far away. Meet a man and end up washing his mother's underwear. What a delightful life you'll have! 

Today is the 8th anniversary of my dad's death. Well, actually it is the 8th anniversary of the day I heard he had died. We think he died 2 days before...he collapsed and died in his living room one evening, after returning from visiting his wife in hospital. He was cooking sausages. His dog was with him. The TV was on. His pancreas exploded. The doctor had come that morning to examine him...because of pains....but had gone away with a "nothing wrong, let me know if you feel worse".

I guess dead on the living room carpet is worse.

I miss my dad still. I'd seen him 2 weeks before he died, on one of my trips back to the Uk. Remember that year I went to the Uk...what? 4 times?? It was the horror year.

So. Today I will be doing Okaasan care. Dear Son is busy all day with bike taxies. And today Okaasan's hospital has some kind of summer festival event. I will go and watch her physical training and join her at the event.Daughter-in-law duties.

3 weeks from now I will go back to the Uk. We still don't know if/when Okaasan will come home. The idea originally was BEFORE I go to the Uk...but I wonder if that is possible.

Anyway. Dad. I miss you so much. I'll eat some delicious food in your memory today - a creme brulee. Or a cake.

Sunday, 20 August 2017

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.


Friday, 18 August 2017

Don't count...

...your care homes before they....are a reality.

Dear Son is not there yet.....

Another visit, another look at the physical training....and reassuring chat from the staff that the diaper use is not constant....really???...and he came away more positive about our ability to have Okaasan at home with us.

I am not so convinced.

But, I am playing the good wife role...gentle, understanding support.....whatever he want to chat about.

I AM being strong in opposition to the point that daily diaper changes are beyond me. And if we can't leave her safely for less than a few hours - home life isn't possible.

But.

Japanese man.
Man?

Making a decision seems to take forever.

I am guessing Okaasan will come home. And we all will see how that is...and then eventually....he will understand that a care home is a better option.

He is an intelligent person. Got one of those off the chart IQs, in fact....but sometimes SO BLOODY dense!!
"Oh, I talked to the social worker...getting a place in a care home isn't so easy..."

You think?
Yeah. Right. Japan - fastest aging society in the world...millions of families just like us, all trying to get outside care for their elderly. I know it. I talk to people....how can he not know this??

Am now waiting for him to reveal to me:

Eggs are not round
The world is not flat
Japanese office workers do no meaning overtime
Trump is going to bring America to its knees.

Sigh.

Holiday. 4 weeks from now.....counting the days....

Monday, 14 August 2017

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.

Monday, 7 August 2017

Birthday at "home"


Happy Birthday Okaasan! 87 years old and getting stronger and stronger.
Our birthday cake visit went well. Just got the timing right:  at towards the end of dinner time in the hospital lounge. She enjoyed the cream and strawberry cake with her nearest and dearest...and only family members.

Still in a wheelchair, but she can stand and move to the  toilet or bed much easier. Blank memory about most things and confusion about place.
"Do you want to stay at my home?"
"U(m, this isn't your home, this is a hospital....you live with us at home..."

Doesn't matter. It just means she accepts the hospital as the "now" and ok place to be. It makes leaving her and coming away much easier.

Most years for her birthday we go out and eat her fave crab. This year was different. But happy enough :-)

Saturday, 5 August 2017

Hospital Visit

I did the daughter-in-law/wifely duties yesterday - the hospital visit.

AFTER I remembered which hospital she was in. I drove blithely to the wrong hospital...and minutes away realised my mistake and had to turn the car round and head in the right direction...

DS was busy all day driving a bike taxi at a city event. So I finished work at 4 pm and went to visit Okaasan in her latest hospital.

She was in a wheelchair in the day room, parked right under and in front of a huge TV. Engrossed in the later afternoon local Tv show of cooking and housewife things. A nurse and some other elderly residents were behind her doing simple handicrafts at a table...folding bags...

Okaasan was happy to see me. Chatted happily about the TV program. Enjoyed  me wheeling here around the ground floor of the hospital - looking at all the paintings and flower arrangements. Friendly, positive. Happy.

NO memory at all of physical therapy - the room nor the activity. Never mind.
Aware of her own birthday tomorrow..after some prompting.
Quite accepting that DS was at work, and that when I came to leave that I had to go shopping. She seems perfectly accepting of being in hospital - whichever hospital it is. This bodes well for the future I think - whether that is regular day service or longer care.

Tomorrow is her birthday. 87 years old.

Thursday, 3 August 2017

Final hospital before...

We moved Okaasan to the 4th hospital yesterday - two cars, two adults....a lot of running around and coordination. I had an unexpected window of 3 hours between classes - so was able to give my morning to the whole operation.
He took charge of Okaasan and wheelchair - and all the paperwork and consultations. I brought up the rear by packing all the stuff, carrying the bags, unpacking all the stuff. Amazing how much "stuff" Okaasan has...considering she has lived in pajamas for 3 months.

Okaasan was happy and cooperative throughout. She accepted it all. No chat about "want to go home"...maybe she doesn't know where IS home? Or, she is so in the moment that she thinks this is always just a temporary place?

The new hospital is a big place, currently undergoing major expansion. Half the site is a building site with cranes and men in hard hats. It's linked to one of the big care home groups. The hospital has a large physical therapy room...I was reminded of a training room for war injured people...there was even a group sitting in a circle throwing a big beach ball around - the classic scene of any physical therapy.

Okaasan is in a two person room. But sadly she is near the door.....where it is darker and the view through the doorway is to a busy corridor with all sorts of people walking up and down noisily. Not a great situation. The other occupant is a shell of an old woman...attached to an IV...who moans "mamama" every 90 seconds....

Hmmm.

We'll see if we can get a better room....

The physical therapist came to visit and asked Okaasan what she'd been doing up to now. Okaasan was a blank. DS was away with a nurse doing admin...I filled in the missing details as best I could. The staff were surprised that Okaasan can sit up and swing her feet to the floor by the bed - they will use a sensor to make sure she doesn't try to walk herself...

We get the feeling she will be here for a short time...and then...come home....

Our freedom time is going. So we are heading to a beer garden after work today.
Dear Son had better drink sensibly.....

Monday, 31 July 2017

Next stage...

Okaasan will change hospitals this week - to a physical therapy hospital. For the last stay to get her really prepped for coming home. Maybe 2 weeks there? 3?

She IS getting better day by day. Yesterday I went to see her, without DS so he could have a break from hospital visits.
She was very alert and friendly, happy. I took her a magazine with a free bag present. Opened the present for her and she was so happy with the bag she immediately put it round her neck and kept showing it to me and explaining its design points!

I also took a coffee  from a convenience store, and we sat sipping coffee in a friendly way.
When the nurses brought the wheelchair for the toilet visit - Okaasan could ALMOST stand unaided to move from bed to chair, and on return was even better.

All good.
Modern medicines are amazing - that her natural state would be that angry, shouting old lady - suspicious and delusional. The drugs have made her like this. Incredible.
I have a glimpse into the future that she CAN come home again and we CAN look after her. It won't be the same as before, she will have less independence - we will have to take her out more....I have no idea how the winter will be - can he work and leave me for weeks alone looking after her with just day service care? 
We'll see.....

We went to see the new hospital on Friday.
Not a great visit - he and I were still angry with eachother about the drinking and his fall. It was raining. I had a 3 hours block of time between classes - we visited Okaasan and then the new hospital and the social worker.
Lots of mis-information. Mistakes. Confusion about where to park the car. Shouting and stress. I never actually got to see the room because the introductory meeting went on for so long....didn't make for a happy Friday.

Anyway. a calmer weekend. A lot of sleep. A walk in the park and flowers. My foot condition is a little better? Maybe? The doctor is trying new medicine. I am being ultra-careful at home clean socks and dry surfaces. Every morning I help DS dress HIS wound. He started work again...with a baseball cap and sunglasses to hide the 5 stitches above his eye.

Onwards. August starts tomorrow...it is Okaasan's birthday next weekend. I guess we'll do something at the new hospital....or she will be allowed out in a wheelchair for a restaurant visit?

Onwards.

Friday, 28 July 2017

And another one down...

Shouldn't blog while depressed.
It'll make ordinary moans seem worse and crisis level.
But I can't help it. Need to vent.

Another member of the family has fallen at home...while I was upstairs...and I REALLY REALLY promise I have nothing to do with it.

Stupid fucker of a boyfriend. He got drunk and fell late at night in the bathroom. Hit his head on something and gashed his eyebrow area. Deep, long cut. Blood spatter everywhere. Bathroom walls and floor. Towels, T shirt, bed linen. The works. Nasty, stinky iron-smelling blood that dried in angry dark blotches everywhere.

Refused hospital aid that night. Of course. Next morning went and had 5 stitches to his face. Very lucky it wasn't his eye 4 cm away.

Stupid stupid man.

I am angry with him. Disgust and anger. Tired and SO over this man and his problems. His mother, the dementia, the hospitals - the whole thing.

I am having holiday in UK in September. 7 weeks away. It can't come soon enough.

I hate his over drinking. It's the culture of Japan - drink till you are stupid. It's the culture of Britain too. Smart people should know that and not let it control them. I don't need this in my life and I am angry that he doesn't see how stupid it makes him.

Four of us went for a drink in the city beer festival Wednesday night. A friend and his new wife, me and Stupid Fucker. Met about 5.30/6 pm. Drank and ate until just after 8 pm. All of us had work the next day. I had an 8 am narration job for the university. I had one drink and then stopped so my brain and voice was ok for people who are paying me to be in control.

God knows how much Stupid Fucker drank. 4 large glasses? Maybe. But it was with food. It wasn't a binge night out. Just a few hours in the city park, at an annual event, with friends.

He and I went home. He was staggering and tripping. The usual. Got home. Prepared for bed. I dealt with the cat and yet another not-dead-yet-mouse....then Bed. He got up to to the toilet downstairs...and as I closed my eyes..glad we'd got home early enough to ensure a chance of sleep...

Crash. Crash. Bang.

I lay there. Wondered. Stupid drink had fallen against the kitchen door? the bathroom sink? Where was the noise from? I waited. 
And 3 minutes later he came upstairs with a towel round his head. Blood everywhere.

Stupid.

I hate him at the moment.


And just to pile on the moans:

I am enduring endless hospital visits and medicines etc because my left foot has some awful fungal condition. The skin is being eaten away and it is and open mass of fragile skin layers. I've changed hospitals and doctors, I'm on my third course of treatment. I can only wear one pair of shoes. I want to go kayaking, but maybe I can't because of getting the foot wet and dirty.

So, there is that.
Moan.

And Okaasan?

oh yes. This blog is meant to be about her.

Yes.

Later today we will go to the hospital and see how her physical therapy is coming along. Then we will go to a different hospital and meet the social worker....because the next stage is that Okaasan will transfer to this physical therapy for old people hospital? Two weeks there maybe to get stronger....and then come home to her super happy family.

That's us.
Stupid Fucker and Angry Zombie Foot.

And a nightly parade of dieing mice.

And how is YOUR summer???

This is mine.

Tuesday, 25 July 2017

Holding pattern and happy

Really sorry - getting behind on the blogging.
Sapporo turned hot again and I just don't have the energy for things...

Okaasan is doing well.
She is starting to walk with walking frame supports and they are pleased with her. One foot is still swollen. She can't stand up herself from seated position.

We've been to see her a couple of times and mentally she is good. All smiley and friendly. Looks at photographs of South Africa and Rome - this lady traveled! - and we wheel her around the hospital floors for a different view.
Hard to visit someone who doesn't have any conversation skills. She sits and smiles at us...we chat to fill out the space. Talk about the tree...talk about the picture...

But she is happy.

The nurse at the weekend said there will be a medical appraisal this week and maybe an assessment of how much longer she NEEDS to be in this hospital - and when she is ready  for transfer...AGAIN! ...to a care facility that will do more and more physical and mental therapy.

Japanese hospitals are a constant merry-go-round...I think this is their way of milking the national insurance system. Moving patients around every few weeks so everyone gets a share of the insurance pie.

But we are sure: until Okaasan can stand on her own and walk from her room to the toilet and back again. She can't come home. We can't sleep with her every night, we do need to go out and leave her for a few hours. If we can't get her to that state - then it's a care home future.

We are hopeful...that in August she will be home. Whether that is for good, or not, we don't know.


Wednesday, 19 July 2017

Restraints in hospitals....

A patient was admitted to a mental health hospital in Japan.
For 10 days he was tied hands and feet to the bed.
After 10 days he had a heart attack - the family suspect Deep Vein Thrombosis.......Economy Class Syndrome...whatever it is you want to call it.

Lack of movement and exercise in a mental health hospital. Restraints.
Something apparently long criticized as inhumane by international commentators.

Sound familiar?

A very sad story about a Kiwi English teacher in Japan.
you can read it here. 


Okaasan is doing ok. DS told me.

He went to see her Sunday. She was up in the wheelchair and trying and failing to stand. She had lunch at the table in the day room. She chatted to him. He came away happy. This week the physical therapy will start.

Tomorrow Dear Son will meet case worker and social worker......

Sunday, 16 July 2017

Visiting dementia

Not a great visit to Okaasan yesterday.

No big crisis. Just the sad reality of a lady with dementia....and an hour of silence and a few words exchanged. a smile or two.

We came home sad. Drank beer. Ate dinner. Felt sad.
]
As soon as we walked into the room we could see it: her face. That face of dementia. She was on the bed, slightly curled up - looking at the wall with an anxious face. The nurse bustled in with us and started raising the bed and talking brightly about family visitors and dinner-soon.

We unpacked the things we'd bought - special shoes, another mug cup with straw...a magazine that....will she look and enjoy mangazines anymore?

Dinner arrived. We sat with Okaasan for 45 mins while she picked at dinner. Alternating between chopsticks and a spoon. Seemingly enjoying the orange jelly....a little miffed that the veggies didn't have soy sauce. 

DS encouraged her to eat gently. He and I talked a little about his customers and the weather. Okaasan ate. Stared at us. Stared at the name card on the tray. Stared at the food. Eventually we turned the name card around - because she stared at it so much and tried to process it. And didn't eat.

Stared. Long.....stares. As if every thought process was taking time. Which I guess it is. SO different from saturday, when she sat and showed me the South Africa pictures - elephants and hotels and friends. Laughing, informative. So different.
Why? She is taking the meds. But maybe yesterday was a lot of stimulation...and she reacted well. A day in the bed in hospital...with a few visits from well-meaning nurses....staring at walls.

It's a 3 day holiday weekend. No physical therapy is going to happen till Tuesday. We worry.

Can she really come home again? Ever? In August, when DS has the rich customer for 10 days of bike taxi work - will I be sitting with Okaasan for lunches and dinners with her like this?

What IS going to happen?

This IS dementia. I feel as if the last few years have been a gentle preamble. A confused old lady, who was able to do most things herself with our reminding and encouraging.

What is here now, and what comes next. Suddenly in 2 months we are here. And it doesn't look good.

Saturday, 15 July 2017

Third hospital...

So.
Okaasan is in her third hospital in 10 weeks.

This time a large, bright Circulatory Hospital - with super bright nursing staff and a positive mood. She is in a sunny, two-person room near the nurse station and has already run a bunch of tests and preps for getting her UP and MOVING independently.

We hope that this hospital can achieve mobility without the need for the brain-fluid draining operation - that meds and physical training can do it.

Hospital decorations


We feel positive.
We think.

We moved her  from mental hospital to circulatory hospital ourselves yesterday afternoon. Sapporo was sizzling in a once in 127 years July heatwave. temperatures at 34 C.....I saw a deadcrow and another one thrown back when he tried to land on a cable....

First mental hospital. Pay the bills, get all the meds, check all the correct letters and mails have been sent between the doctors. get two huge bags of clothes and washing things, diapers.

Okaasan arrived in a wheelchair. Happy enough to see us.
Loaded her in the car. Drove quietly and gently to the other hospital.

Waited, endless tests...and finally admission.
More bedside tests for Okaasan.
Finally she is sitting happily in her bed and looking through photo albums with me - talking about South Africa again. It's the best conversation I've had with her for weeks. Entirely normal. Happy and good conversation.

I was so happy. I moan a lot about Okaasan. But I have - strangely - come to love her. When she is in a good place mentally it is such a relief and so welcome.

The hospital had a good vibe. Like a smart business-style hotel in Japan. Decorations, pictures, nice furniture. View from the window of the forests and hills.



The admissions procedure was exhaustive/exhausting. The staff interviewing us about Okaasan and her recent events - even the hospital dietician  talking about her food tastes (no cheese or milk or mince. No prawns, but loves crab etc)

And this is maybe a strange comment, but foreigners who are living/have lived in Japan will understand: the staff treated me as a human, NOT a foreigner.
They made eye contact while talking to DS and I, talked to us equally...asked me questions. Just treated me as the family member. It's a small but good point about a group of people.

Okaasan seemed happy in her new place. I worry that the change from quiet, non-stimulating mental hospital private room to a shared room near the bustling nurse station will be too much for her - but we have to hope it's ok. There are no private rooms available at the moment.

And so. We hope again - to get her standing and walking a little. To try and get her OUT of diapers and using the toilet herself. It's a holiday weekend in Japan now, so not much will happen for 3 days - but then we hope this hospital will get Okaasan's body matching her new, calm and happy mind.

She's been gone from home over two months now. In August DS has a demanding, regular customer for the bike taxi and in September I will be returning to the Uk for the first time in 5 years. At the moment it is easy for us to share the Okaasan worries - in the coming months our lives will be busier.

Anyway. Mercury is rising...I have sweated the computer chair into a mush. I am going to go and stretch out by Netflix and indulge in "Homeland".


Wednesday, 12 July 2017

Huge choices :-(

Came the message from DS on my smartphone at lunchtime.

"I'm in a different hospital with Okaasan :-("

And so our day changed...

The mental health hospital alerted him mid-morning: Okaasan's legs were swelling up, they were worried it was signs of heart problems etc. Please come quickly. 
He swept into a rush of getting away from work, taxi to the hospital, consultations, ANOTHER hospital recommendation - Circulatory Hospital? - then he took Okaasan by taxi to the other hospital for 4 hours of checks, advice...waiting and diagnosis.

Not heart problems....phew! - but circulation problems which are probably due to inactivity and blood thickening. Meds for thinning the blood...recommendations for circulation treatments and physical therapy...and recommendation of admission to THIS hospital to tackle these issues...

DS very shocked to realize in all of this that Okaasan couldn't stand by herself or walk....he was hauling her in and out of the taxi and hospital chairs. She is in diapers. Happy enough, luckily. Not over-stressed or angry.

He took her back to the mental health hospital - she was happy enough to be returning there. During the long waiting in the afternoon she'd constantly said to him: "Oh, it's busy here, we should go home" - but seemed happy enough that the "home" place she returned to was a big building with a smiling woman in a white uniform...

So. All of that.

And THEN he had to change tack and rush off for his 5 pm appointment with the lawyer to talk about the house sale and the legal problems of that....

Trying to summarize:

Selling the house is going to be hard.
He can't become her Legal Guardian for the housesale unless there is some major reason WHY the house needs to be sold.
Just "nobody in the family needs the house now" is not enough.
If she needs the money from the house for expensive care - better.
Hospital stay/general care home - probably isn't a good enough reason for a judge.
This is why - there are empty homes all over Japan. Many families are stuck with former homes they can't sell until the elderly person dies. 

Bugger.......................

Very unlikely/dangerous to try and get her to sign documents now - the fact she is in a mental health hospital and her dementia level has gone up - no legal professional is going to go near that situation and risk professional censure.
If she had signed the documents 2 months ago, before the fall, all would have been ok...

Bugger.

Oh .....and even if he and I get married....and then he dies before his mother...I would be able to take care of her life decisions and use her money for her care...but after she dies...the proceeds from the sale of the house would go to the Japanese State...and not to me...unless I have children. Cats don't count.

I don't need/want Okaasan's house money...all I want is to know I can make decisions for her in the event of his death by over-skiing.

Are you still with me?
I'm not.

So. We have had looong, sad discussions last night and this morning.....and it's only 7 am...

We both feel that her physical decline in walking etc is the most pressing concern. Bad.
The latest meds seem to be calming her mental condition. Good.
The mental health hospital is making her physical condition worse. Very bad.
She can't be at home unless she can at least walk to the toilet herself - even if she goes to day care Monday to Friday daytimes, that would still leave us nights and weekends of DS having to sleeping in her room to stop her walking and falling....and all the diaper changing.

So. If the mental condition is under control - she should be admitted to the Circulatory Hospital to get standing and walking again? They have a physical therapy training room and program?

IF she can stand and walk a bit.
THEN come home?
OR - find a care home for her?

TRY to start the process for DS to become Legal Guardian. TRY to get permission to sell the house?
OR: just leave the house empty and unsold, until Okaasan dies?

We are exhausted by all these choices and decisions.

There you have it.

The orthopedic hospital last month didn't care for Okaasan's mental condition.
The mental health hospital now isn't caring for her physical condition.

In 2 months her mental and physical conditions have declined sharply. All because of a fall.

Bugger.

Sunday, 9 July 2017

Update....

Sweltering with 27C here at 9 pm...pretty unusual...so I can't sit near the computer very long.

Okaasan had another good week. The new meds seem to suit her. DS went to visit midweek, and we went together on saturday.

She was in a wheelchair...but calm...kind of over calm...just watching our faces and smiling a bit...looked at photo album...made a few comments...didn't recognise a picture of her late husband. Passive. 

I guess this is the new Okaasan. I miss the livelyness....but don't miss the rage and anger and paranoia.

Social worker and DS talked about how things might be if Okaasan comes home - 5 days a week she would go to day service.. and we'd care for her at weekends. Need to do more about her walking. Not at all sure about the brain fluid draining operation - some friends tell me it can be really good....I don't know....another hospital...more poking and prodding...more strange faces and places...

And...finally. DS is going to see the lawyer I introduced to discuss becoming the legal guardian thingy for Okaasan. He still isn't sure she can sign all the necessary house documents...and understand. He said he mentioned the house to her...that it was empty and that they should sell it...she just responded in a general way...did she even know WHICH house? No mention of oldest brother...

Anyway. He will go and get legal advice and see what he should be doing. It isn't just one document...but several....official papers are registered in the wrong place. The buyer is being patient.

Sorry. Too hot and sweaty here...going off to sit somewhere cooler,

Sunday, 2 July 2017

Black Butterfly


First things first.

Okaasan is still in a better place, mentally.
Since last Monday she has been on new meds and so far the doctor is happy with her progress and stabilization.

And Okaasan is spending most days sitting upright in a wheelchair in the dayroom of the hospital - watching TV and even interested in newspapers. The restraints are used to stop her taking out the injection needles and tapes on her arm. The hospital will try to reduce their use...

She has slight pneumonia.....they are monitoring that.

All good. No feeling yet about when she might be ready to come home/move to a care home. Only 1 week so far of fairly stable condition.

BOTH of us went to see Okaasan in the mental care hospital yesterday.
It's a new, large hospital - nicely surrounded by gardens. Different buildings. I could see people sitting in day rooms with large tables and TVs...staring a bit vacantly.

There was a whole range of security systems to get in - and then the woman doctor came to meet us and I got invited upstairs with DS for the doctor/family meeting and Okaasan visit.

Okaasan SAW me and SMILED and WAVED!!!
As we came out of the elevator on our way to the doctor's room she was being wheelchaired to the meeting room - and she SMILED AND WAVED!!! I've never been so happy to see that!! Felt all overcome with emotion :-)

We sat and heard about the latest drug regime and how it seems to be working better. Her moods are better and she is more mentally alert.

And then the PET? MRI? photographs came out. I couldn't whip out my smart phone for a picture - so you'll have to make do with some stolen-from-the-internet images.

Okaasan's brain is like that right picture - she has a big black butterfly in her brain. It's the space. In Japanese the "heya" - which can be "space" or even "room". She has a lot of space, filled with fluid.

To be honest, it was a bit shocking. We've lived with her all these years and known her mental condition. But to see it in technical detail in a hospital. Kind of shocking.
In fact her brain has an even bigger, and fatter butterfly than this picture here. The doctor said she may have excessive brain fluid, which could be adding pressure...another hospital could ultimately do further scans and there are procedures to test by drawing out fluid thru the spine - and if it has good results to drain off fluid from the brain.

All a bit shocking to think of for an 86 year old, who has already suffered 6 weeks of hospital life.

That's a future possibility.

For now - the immediate concerns is continuing the drugs and hoping for another week or two of good mental/emotional condition.


And then we went to see Okaasan in the meeting room. Hiding our hospital visitor name cards. Sitting across the table from her in an all-white room. We stayed 40 mins.

She was happy to see us. Smiled. Looked tired. Kind of passive. Listened to our double-act, prattling on about stuff conversation (which we carefully did all in Japanese) and occasionally responded.

Yes, I've been to South Africa
Australia
Maybe Kenya
New York

Okonomiyaki pancakes? Yes, like those.

Dear Son had forgotten to take the holiday travel pictures to show her and chat about, so he and I waffled on and on. A strange conversation - Okaasan sat across the table from us and sort of followed it. The weather - food - travel - on and on.

Many years ago as a reporter in the UK I went with a woman to visit her son in prison. He'd hit another man with a baseball bat in a  fight and killed him. Mother was campaigning to prove his innocence. She invited me as a "friend" to prison visit, so I could write a story. We sat in the
prison visit room with her boy chatting about normal life beyond  the high walls - family news/food/sport...and it was pretty strange. 

Visiting Okaasan was like that. I think Dear Son was grateful to share the visit with me.

So.
Future?

We can't really imagine Okaasan coming home for another few weeks....
Coming home. Care. Signing the documents about the house sale.

Any of that. Not yet.

And the whole brain fluid - whether it could be drained and make a difference? Not a priority.

So, there we are.
After the hospital DS and I biked downtown. Enjoyed the park on a Saturday - flower festival and sights. Rare for us to be together downtown.
We went to a big buffet place and ate ourselves stupid. There was a $6 dollar all-you-can-drink-wine plan. We drank. I ate ice cream with loads of dried fruits.
We came home and slept in the afternoon. 

Onwards.


Friday, 30 June 2017

Two good visits

Just putting on blog record:

DS went to see Okaasan on Wednesday and again she was in a good space in her brain. Happy to see him, happy to chat and look at pics. All seemed normal. Conversation a bit odd and mixed up - but happy.

He is meeting with the doctor on Saturday. 
I am going along to the hospital too and will wait outside....he will ask the doc if it's ok for me to go visit too. Or whether it'll send Okaasan back into a dark and angry place.

If it's ok - I'll go and visit too.
Then we've booked ourselves a late, and hopefully lovely, lunch at a famous buffet restaurant.

So. stand by for a blog report about a Japanese mental health hospital....

Tuesday, 27 June 2017

Positive...but shackled..

Sorry for my sad rant yesterday. If I can't let it all out here, where can I?

DS will meet the doctor later this week....to see if the shackles are really necessary at all times....etc etc. It just seems so harsh. What is the worst she is going to do? Rattle the door handle and shout at the staff? I guess if they have lots of patients rattling door handles....

Anyway.

DS went to the hospital on Sunday. Okaasan was in a good place mentally. He sat with her for an hour in her bedroom. They looked at photographs of her trip to Kenya, they looked at pix of that family trip to Kawagoe we did 2 years ago (when her brother and son were alive)...and she recognised me in the pictures. And didn't hurl it across the room in rage.

That's progress.

So. DS says he hopes for at least a clear week of mental happiness before even starting to consider what happens next. The hospital originally said one month to get the drug balance good. Now it is 2 weeks....

And so.

Oh my. I hope I am never, ever shackled to a bed...never....never...

Monday, 26 June 2017

Is this the best we can do?

Shackled to a bed.

Okaasan is tied to a bed in a mental health hospital, on drugs to control her moods.

We are having serious doubts about this. 

DS gave the hospital permission to use restraints at the start, because we were all worried that Okaasan would get up in the night and fall down - damaging her spine or other body part again. It was for the best care.

But now? She is in a room alone. The door is locked. And there are foot and arm restraints.
Is this the best that a Japanese mental health hospital can do with an 86 year old who suffers from dementia?
She isn't a danger to other people, maybe there is a risk to herself if she gets angry about the locked door or something in the room. But, restraints?

DS is calling the hospital today and hoping for a doctor meeting later this week.

We feel awful. Guilty. Is this the best way?

Surely there must be a better way to put an 86 year old on mood controlling drugs in a safe environment? She was shouting and angry with people and things. She threw things across the room - but she wasn't running amok in a public place with a carving knife.

If I were tied to a bed in a locked room, with no TV or magazines I WOULD BE ANGRY TOO.

It's all shades of every mental health care scene I've seen in movies, Jack Nicholson in One Flew Over the Cuckoo's Nest, or the recent Silver Linings Playbook. We are the family unfamiliar with all of this....and Okaasan is depending on us to make good decisions for her.

Oh. I don't know. She can't be at home shouting and throwing stuff at us, a care home doesn't want her until she is calm and careable....and this....is this the best we can do?

Friday, 23 June 2017

Holding pattern...

This family drama is in holding pattern - circling the airport, peering out the windows...wondering when we'll get permission to land...or whether we'll be redirected to another airport.

Okaasan in the mental health hospital, taking drugs to calm her down.
Dear Son visiting a few days a week.
Me staying away enjoying my life.

Dear Son thinking that he is going to wait and see what happens with her brain - and whether he can waltz into the hospital one day (or if she comes home) and give her papers to sign which will mean her home for 40 years will be sold.

He seems to think that might be an option...still.

Thankyou for advice about becoming legal guardian - two readers who know me in real life have contacted me to offer advice. Dear Son has done his research and talked to the real estate agent. There apparently isn't a big rush on the house sale because the buyer is a developer, not an individual. 
Delay on the papers doesn't mean a family is homeless, just that the development company can't start house demolition and site clearing as quickly as they hoped. Becoming a legal guardian would take a month or two - so DS is going to wait.

Wait and see: will Okaasan calm down enough to be able to cope with this topic and accept and sign?

This week she was calmer on his visit. Still angry about the nurses waking her up too early, but chatted with her son about things in a reasonable way. He came home a little relieved. We continue our Life Without Okaasan - eating random food we like, even planning a small BBQ with friends...alternatively happy in our life, and guiltily remembering Okaasan's enjoyment in things.

Wait and See.

Monday, 19 June 2017

And then....

First of all - that's a picture of my weekend :-)

Rented a bike in a mountain village and cycled for 5 hours. Saw flowers, listened to birds, ate icecream, met a wood sculptor, got sunburned.

Also enjoyed time with my man : homemade hamburger in the garden, sushi, movies on TV.

And. Booked airtickets for a UK holiday in September.

And then...

Saturday he went to see Okaasan.
He came home crushed.
After two visits when she seemed to be happy and good. This time, she was angry, shouting and NOT happy. The nurses warned him before they met, but he was still shocked.
He really feels it. To see his mum like this. Wondering if she will ever be "herself" again. Will she ever be able to come home and be happy with us?

For the first time we talked about what will happen if she DOESN'T come home. She will have to be in a care home. And us? We live in a big old house that is expensive for just the two of us. Questions about the future - should I move my English school here? Should we explore Airbnb?

And then....

The real estate agent called.
There is a buyer for the family house in Saitama. A good enough price. If it all goes through Okaasan will need to know about the brother "moving to somewhere smaller"/house sale etc and sign the documents to sell.
While we thought that would be possible for Okaasan to understand and agree to one month ago. Now is totally different. What timing....

Now, if she is told her house is being sold? What would that do to her mental state? Would she understand and be able to really make a decision? It doesn't sound promising. It's unfair to make the house buyers wait too long.

Discussions are taking place...DS may have to consult a lawyer to get the legal right to make decisions on behalf of his mum. Another complication he doesn't need in his brain right now. I am being gentle and supportive to him. Poor guy.

Friday, 16 June 2017

Tasting freedom...

Ok.

I can confess here: I am soooo happy Okaasan isn't here.

There. I said it.

I am beginning to enjoy and luxuriate in the freedom of being just a couple again. After so many years.

There is a lightness to home life. We are playful with eachother. The schedule of life - specially meal times and contents - has relaxed. My God - we are even going out after work and doing things.

It's a new norm.

And I am loving it.

Yesterday DS went to visit Okaasan and I had a sudden fear that the hospital would say she was fine to come home and we would have yet another weekend of tension and care work. But no - he came back and said she seemed fine, but that she wouldn't be coming home so soon....in fact the hospital originally had said one month...ONE MONTH???!!!! - whatever - not this weekend.

My mind is giddy with possibilities. Walking! Cycling! Flowers! Eating. Pokemon special event! Is my knee strong enough to load the kayak on the car roof and go out to the lake?? All of that.

You don't realize how trapped you are/feel until the bounds are loosened and release. We have lived with Okaasan for years now, it's become our normal life - with only a night or two of break - and now I am REALLY beginning to relax. Carers need a break, really.

I am careful, though, not to express my happiness too much with Dear Son - after all this is his mum, and she is in a hospital away from home. He has sole responsibility to make decisions. I am lucky that he trusts me enough to talk to me about the situation - but the decisions are his to make.

Hopefully the medicine will give Okaasan a new level of serenity and she can come home again. And if she does come home - now she and we can understand that it is possible for her to stay in another place - so maybe short stay breaks for all of us are an option in the future. Or - maybe she can't come back home and we have to find a care home for her.

All of that is to come. For now - I am planning a weekend of relaxing. Have a nice one everyone :-)

Wednesday, 14 June 2017

Happy..................

LISTEN to those lyrics!
Okaasan is HAPPY!!!!!
Dear Son reports from the hospital that she is smiling and calm and HAPPY!
He went and sat with her for an hour, watched her eat her lunch.
Chatted about things....or listened to her chatting about things.

Amazingly. She was happy.

So, we are happy. And we aren't on meds.

Is this possible in just 24 hours? Was this just a lucky moment that when he went she was on a high? He said she seemed naturally happy, not manically so. She said the last time they'd met was maybe downtown...she knew who he was.

Really wonderful. 

He met her in a meeting room of the hospital and the nurse brought her in a wheel chair. She wasn't allowed to have one of her magazines (too much outside stimulation) and she isn't allowed TV (in fact we did notice at the weekend that Tv seemed to enrage her even more, "WHY are those children working at 7 am?? WHY?").

So. There we are. The meds are helping. Thankgoodness for modern medicines.

We had a nice calm after work evening. I weeded the garden. He watched football on TV. The cats lounged on warm concrete. We ate dinner together in the kitchen....I take Okaasan's chair at the table now (work out the symbolism of that...) and then after some TV we slept. It was nice  and normal.

Meanwhile.

***WOW!! You lot - blog readers.
Thankyou so much for all the messages and support. They kept popping up on my e mail feed all day on my smartphone. Gave me lots of warm fuzzy feelings. Thankyou - I know there ARE people reading this blog, but at times like this past week I really understand it.***

What happens from now on, we'll see.
But several barriers have been broken - specially with Dear Son and his thinking. He has accepted outside help from care manager and social worker, and doctors. He has accepted that medicine maybe has a role to play in his mum's care. All of that is quite a lot. He is his mum's son, her attitudes to hospitals, doctors and medicine have inevitably influenced him.

But now. Medicine and a hospital are maybe helping.

HAPPY!!!!!!
๐Ÿ™‹

Tuesday, 13 June 2017

Guilt

In Japan. You know who is in and out by the shoes in the entrance hall.
I came home yesterday to find Okaasan's slippers.

So. I knew she was out. Gone. Not at home in her room raging at the curtains, us, the ceiling, the Tv, the blanket, the water.....

The house was empty and quiet. I changed into my home clothes, opened a beer, fed the cats and cut the lawn.

Dear Son came home soon after, looking exhausted and emotional.

Okaasan is now in a mental health hospital. In a locked room. With a restraint on the bed, so she doesn't get up and fall in the night. On drugs to try and level out  the anger at us and the world.

And we feel awful about this. Guilt.
What have we done to Okaasan? Is this the best thing to do? Really?

Apparently, an elderly care home won't accept her at the moment because of the anger issues. Consideration for other residents and staff. If she calms down enough to be with other people then admission to a care home is possible - probably a private room with staff looking after her. Or home? Maybe.

But this was the next stage advice from social worker, day service manager and the doctor at the orthopedic hospital - that Okaasan's fury needs medication, and then once she is manageable another stage of care home or real home can be considered.

Dear Son took his mum yesterday. They had a short joint interview with the doctor, in which Okaasan denied ever being in the orthopedic hospital for 3 weeks etc and waffled on about going downtown alone every day. Then a nurse took Okaasan gently away and Dear Son talked to the doctor alone about their suggested program. To keep her at the hospital, try some dementia drugs to find a good level for her.....a level which will let her be easier to care for. 

Finally, after years of ignoring the drugs options. Dear Son is accepting that drugs may help his mum.

He was shocked to be in a mental health hospital. However new and bright it was. Many many locked doors. Warnings about not bringing sharp objects, outside food...restricted visiting hours, questions about who was allowed to visit. All of that. Me too - I have images of One Flew Over the Cuckoo's Nest.

We went and ate soup curry near home. We went to a local bar. We drank and talked quietly. Both just shocked, and feeling sad and guilty.

"It's like a pet that people throw away. That's how I feel. I think I should have done better for her" said Dear Son.

And I agreed. I tried to gently soothe his feelings by saying how much we have done for Okaasan over the past 10 years. So many things we HAVE done right. To make her happy here with us. How we have taken the right decisions along the way...and in the past 3-4 weeks.

She needed to go to hospital for the back.
She needed to stay quiet in a corset in bed.
The hospital has no mental health care for patients.
We tried to have her at home.
We tried to protect her physically, and mentally.
We tried. 
 

We have tried to look after her at home. It isn't possible now. That isn't our fault. It's the sickness of dementia that has taken over her mind. If someone is injured or sick, you try to get help - professional help. And that's what we are doing.

We tell ourselves this. But we don't feel it.