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.

Sunday, 11 June 2017

The weekend

Where do I begin?

Um.

No murders here.

That's good.

A lot of alcohol has been consumed. Necessary.

Short story: 

Saturday she seemed to calm down. Kind of comatose, actually. Let Dear Son lead her and direct her every move. A few flare ups. But basically subdued. He was amazing. A day of nursing. Always always the kind, gentle explaining voice, the helpful agreement. God. What a man. I hope he nurses me like this, if I need it.

Sunday? Today. Bad and good. The morning was all rage and fury.Sullen. Shouting.
Then mid-afternoon completely normal. Polite, responsive. Smiled.

Currently - 4 pm on Sunday. Raging and angry again.

Physically she is so so. We couldn't leave her for a day alone in the house while we work. That's for sure. She can stand up from the bed. But walking isn't good at all.

Food - she actually came to the table and ate with us on Saturday night. Didn't talk or respond much. But ate. Another meal she accepted from a plate held near her nose in bed. Other times she angrily refused.

So.
Dear Son has slept on the floor in her room. He and I have taken turns sitting in the kitchen to be within shouting response or about-to-stand response distance.

It feels as if - the past 8-9 years was a prelude to all of this. The Main Event. NOW we certainly have dementia in the home. Unpredictable and often nasty and tiring. What came before was often funny/weird and  sort of predictable to us.
This isn't.
We are both tiptoeing around our own home, sometimes literally. And we are making peace offerings try and make Okaasan happy and calm. Choosing food and snacks she might like. Arranging things just so, as she usually likes them,. Worrying about the lost button on the pajamas, and whether she will rage about it, Worrying about  the heat/light/curtain/cup/chopsticks.

It's all fluff really. I feel at this stage in her brain - if she wants to find fault and be stressed about something she will be. We can try and make her environment as perfect as possible, but nothing will change the fact that a huge shift has taken place after 3 weeks of hospital.

Feel depressed. That's me. And I expect him.

We are going to talk somehow tonight. Probably an In the Utility Room Summit. In whispers...

To start the process of getting her into a Care Home. To start the process of getting her on medication for the dementia (will he finally accept that?). To ask the day care manager tomorrow morning to help us.

Cos we need it.

Tomorrow is Monday and I have a week or work ahead. As a bike taxi driver he can cancel another week or work. His NPO boss has family members  with dementia herself, so she understands. But he can't sit in the kitchen every day with the Dementia Tyrant waiting to explode.

This afternoon I sent him out for a walk. To have a brain rest.
He came home from the alcohol shop with a box of red wine....


Saturday, 10 June 2017

Home. And not happy.

Coming home.
Just that phrase conjures up such a nice, happy feeling.

Okaasan coming home from hospital wasn't.

She is alternatively silent/angry/whiney...very few moments of lighter mood.
She is totally focused on Dear Son. I am beyond the pale.
She hardly moves her body. Sits or slumps. Doesn't ease back pain herself by shifting weight. Just exists inside her body, until DS suggests a different position.

Her walking and standing is better. But shaky. I don't think DS would leave her alone on Monday or Tuesday. It doesn't look that strong.

But, more than the physical - is the mental situation. 
Incapable, dependent unhappiness....
Watches Tv a bit, without any sign that it is giving her pleasure.
Lots of lying down with eyes closed and crying out with real or imagined pains and complaints about too dark! too bright! too cold! too hot!

Dear Son is a saint. He is endlessly trying to respond to every passing request.

Coming out of hospital was ok. A silent drive home.

Then lunch.

We tried to time lunch so she would be in the kitchen sitting when the Day Care Manager and the rent-a-bed people arrived.
She was. But the timing made her angry:
"Who are you? Why are you here? This is very rude! In Japan you don't go to someone's house during mealtime? Why are you here?!!!" all said with real venom...

It was a big performance. Moving the sofa, cleaning the opened up space, building the bed. THREE bed charity people, plus Day care Manager and us....it was, inevitably, a big noisy confusing time. Okaasan sat in the kitchen watching it all with anger...while the day care lady tried to calm her down with chitchat.
Trying to arrange the bed, with blankets, cushions etc....TV view.....

There was also an hour or two of endless fuss about the windows and curtains, wind and sunshine...Okaasan shouting at us and waving a back scratcher. Refusing MY help and screaming for her son.....finally he helped her stand up and walked her to the windows so she could see up close that what she wanted was structurally impossible with this house and these windows. It was the best way to calm her.

Me. The English woman.....
She has told him several times that my messy, dirty kitchen is bad and that I am trying to kill her.

Pretty ironic from a woman who hasn't cleaned anything in years, who is in a room I spent 2 weeks cleaning....

That's a joke. I know it's her dementia and paranoia.

But I also wonder....DOES she have some memory of the kitchen fall a month ago? Some memory or understanding that maybe it was the car mats left on the carpet that MAYBE tripped her up?

It is my guilt. We don't know how she fell. But the only thing I could see in the kitchen that evening was the car mats I'd left near the kitchen door. I wondered if she had tripped over them. Dear Son has told me endlessly not to dwell on that - because he says he knew about the mats too, and maybe it wasn't the mats etc
But still. It is unnerving now to have her talking about MY dirty kitchen. And blaming me for her fall....and pain and unhappiness.

My kitchen IS dirty. I know. I kind of don't care. And luckily DS doesn't either. We aren't spic and span types.

Anyway. We've agreed to stop talking about falling down/back bones/hospital stay - just respond to her talk of pain as a pain of old age.....and not keep reminding her of a fall and much hated hospital.

And so. Here we are. Another weekend of rain and stress at home.

Dear Son slept on the floor of Okaasan's room. Got up 3 times in the night.
We are taking turns to sit in the kitchen and watch her and respond to her complaints and needs.

There is painkiller medicine. There is calming down medicine.

The day care manager saw the whole situation very well when she was here for the bed installation. She has recommended that Okaasan gets a new mental assessment, that she is put on medication for the dementia etc - that if we can't cope here at home she will activate the Move to a Care Home idea...it will all take time....

And so. We try to get thru this weekend. And see if Okaasan calms down, gets more independent in her environment.

If.

If.

if.

๐Ÿ˜ฐ




Friday, 9 June 2017

Care....home.....


..............

..................................................

.............................................................................















Here.
WE are the Care Home.
Here...at home.

How much can change in 24 hours....

Wednesday they are talking about how she can't walk safely yet and will need monitoring and mental care...Thursday the doctors are saying : "It's a miracle! She can walk! She can climb a few steps! Return to Sender!"

And so. She is coming home.

It's good, for Okaasan. It's um.....um....for us.

Actually, when Dear Son mailed me lunchtime I said: "Bollocks. Bang goes another weekend. "

And then I tried to think positively and kindly.

We are going to the hospital this morning to fetch her. We are renting a bed for her to sleep on, because getting up and down from her usual place on the carpet carries more risk for falls. So we'll have to rearrange furniture (which she will love...NOT).

And so.
That's what is happening....

You really can't say this blog is boring, can you! Bit like American or British politics. Look away  for a moment and huge seismic shifts have happened.

Anyway. Bollocks. 
Let the caring begin.

* Day Care Manager and Dear Son have agreed that if this doesn't work out then the hunt for a short stay unit will resume. But we are all hoping it won't come to that. Hoping she can resume safe/doable life at home. And not savage our ankles.

Thursday, 8 June 2017

Looking for a caring place

Another stage.....

The Day Care Manager/Hospital/Dear Son have agreed that Okaasan should be moved to a care facility of some kind for short stay and physical therapy to get her walking safely and independently again. So she can come home.

The hospital wants her out.
We can't cope at home with her- physically or mentally.

So. Another stage.

I feel sorry for her. I really do. I'm surprised at myself. Thought I'd be skipping around the house, feeling free and eating cheese fondue.

Instead I feel sad that her life has changed so much. A month ago she was living happily in her own room, with her things around her. Going out for a little walk late afternoon to familiar shops. Having meals at the kitchen table while family chatted on about things. Feeling settled.

Now. All different after that fall May 13th.....

I haven't seen her since she returned to hospital on Sunday, but DS has been at the hospital every day. Ironically, he said that yesterday she was very chirpy and told him many times all about the gym/community center she was once a member of - where you could sign up for many kinds of exercise! Maybe a memory triggered by being in the hospital's physio room? Anyway, a happy memory.

So. We wait to see if the Day Care Manager can find Okaasan a room in a care unit where the staff can do more to help a lady with dementia feel happy, while doing all the muscle building necessary to get her walking safely again.

I'm already wondering how to make her room in this place familiar and welcoming. What things she might need to see to feel it is a good place. The little desk calendar, the notebooks, the red blanket....

Monday, 5 June 2017

Back to hospital

Just a quick update, before I head off for work.

Okaasan is back at hospital. Same bed. same room room. With nurses under instructions not to force her to eat food she doesn't want, and to try and just mildly agree with things she says.
If they can....

At the end of all that - getting her back to the hospital was actually very easy.

She was dozing on the sofa at 1 pm and I felt bad that we were about to unsuspectingly rip her out of comfort back to the place of uncertainty. Even though for her own good. Like when the cat is snoozing in the closet and I am tiptoeing around to prepare the cat carrier in another room so he doesn't know the a vet visit is a coming.

Just before the wheelchair taxi arrived Dear Son got Okaasan alert and took her to the toilet. She was there ages...leaving the taxi driver and Dear Son hanging around in the entrance hall...and then...he helped her walk out..oh and "turn right!" and "sit here"...and "put on this coat" and "here is a nice driver man" and "let's go!"...she was out from the toilet and into a wheelchair and out on the road to hospital without a fight. Amazing.

The nurses said she will need at least another week of hospital to get strong enough for solo walking. She IS really shaky and not balanced. The day care manager telephoned...she and dear son will discuss things...whether a short stay unit could be used....or not.

WE were knackered. And I had the extra emotional toll of seeing the events in London on my TV screen. I was born in London. It's my city. I had dinner with a friend near London Bridge after the Olympics....I feel numb about it all.

And so.

We certainly couldn't have Okaasan living with us if she was like Saturday's condition. Impossible. For the first time Dear Son actually said that. He saw the reality. He talked about her living in a care home.

But we really really believe that the Saturday condition was an extreme. She isn't that bad, yet. We hope that she can get strong physically and come home and mentally enjoy life again with us.

We do hope that. I know that is shades of an abuse victim saying: he didn't mean it, he was just drunk and angry. But we don't believe Okaasan is that bad yet. This whole hospital experience is effecting her and will make her dementia worse. But we think she will retutn to a calm state.

But we are exhausted.

And now I am going to work....

* Thankyou for many messages. I can't reply to all. Just no time and energy. But thankyou .:-)

Sunday, 4 June 2017

On watch. In turns.

One hour each in the kitchen - at hand to make sure Okaasan doesn't fall off the sofa, stand up...throw a tantrum. On watch to respond to her ever-changing needs and anger level.

Yesterday morning was definitely worse. Late afternoon she was mixing querulous with bursts of anger. Occasional laughs. Then stressy hand flapping and shouting.

And I am emerging as the focus of negative feeling.

"That English woman..." - who doesn't wipe things down properly, doesn't know Japanese way...doesn't...

And one very odd conversation about "Japanese people don't wear aprons at mealtimes"...from a woman who comes from a culture and generation where women certainly DO wear an apron at mealtimes. Okaasan's absolute routine ever since she has lived here, and back into the mists of time, has been to put on her apron when sitting down to eat.
But now? What is that? Why do you want me to wear it? Japanese people don't do this!

It all has started to come out. Paranoia.
Hate cats
Is this water safe to drink?
Maybe somebody pushed me? Did I fall naturally?

And place confusion.
Where is this? Where are we going to eat?  Do we live here? Are those my clothes? Are we going home soon?

Dear Son is keeping his patience so far.

He and I have had long conversations about options and what-is-best. I think the best option is that she stays at home and he and day care support try to manage this situation into the coming week. Second option is to get her into a short stay unit. Third option is go back to hospital.

Apparently the short stay option isn't that easy right away. Okaasan's Welfare Care level is too low to be able to activate that option immediately. She is Level 1. That's the level based on the interview with the psychologist and home appraisal by day care manager. Obviously her dementia level has shot up (down?) several levels this week, and if she was appraised now it would be different.

Dear Son is for the back-to-hospital option. Even though he recognises it won't be good for her mentally, at all. Physically she isn't so great. This morning she seems to have more back pain. Wheelchair to the toilet again.
Meanwhile HIS back pain is increasing because he is hauling her around....

We are taking turns to be on watch.
Sitting in the kitchen within sight and shout range of Okaasan.
I sit and read a book. Look at my smartphone. He relaxes upstairs with TV.
Then an hour later we swap - he sits in the kitchen watching football on his smartphone and I sit upstairs with Netflix.

He slept again on the floor of her room and took her to the toilet in the night.

Today?
We'll try to do lunch...aiming for a friendly, family feeling at the kitchen table. Which is nearly impossible with Okaasan complaining about the food size/type/arrangement. I keep my head down and just eat. let Dear Son do all the soothing agreeing and gentle explaining.

After lunch.....the major task of getting her BACK to hospital.
Special wheel chair taxi will come at 2 pm.
We've agreed to try and tell Okaasan "oh, let's go out together, let's use the wheelchair...let's take this taxi..." and NOT, initially make it Return to Hospital. Until that is inevitable.

I fear an actual physical situation with her resisting him trying to get her into a wheelchair and shouting and anger.

He feels he must follow the hospital system. Return her there. Talk to the nursing staff etc Then day care manager to tomorrow.

It's the Japanese way. To accept system and authority. Of course, it wouldn't be my way as an English woman....if this was my parent I'd be calling the hospital and TELLING them that my parent was going to stay here at home. Then hassling the care manager Monday morning to give me a) full care worker support for home care or b) get a short stay place ASP.

But it isn't England. It isn't my parent. I try to imagine what it would be like if this was Mum or Dad, or my wonderful step-mum shouting and attacking verbally like this. How I would feel. It must be so hard for Dear Son.

I have a protective non-family coat. I react as a human to the anger and rudeness. But without the emotion.


So. Okaasan will - maybe - go back to hospital this afternoon.

And yes. We are planning to let out our whole loada stress with beer and meat/soup curry for dinner. Looong weekend. It's rained and been cold too.....going to work next week looks like happiness on the horizon...


Saturday, 3 June 2017

Volcano in the living room

Bubbling, bubbling...erupting...throwing out rocks...hot...molten...simmering again...bubbling...spewing forth....raging...simmering...

ALL of the above. Often in the space of a few minutes.
We are on volcano watch this weekend.

Haaaaaaaaaaaaaaaaaaaaaaaaaaaaa. 

Physically? Okaasan IS getting better. We had to use the wheelchair last night. But then she started being able to walk and stand - in a kind of two-step with Dear Patient Son. They look like judoists grappling. She is holding onto his arms as he backs slowly in front of her and she shuffles forward.
She has got to the toilet a few times with help.

She slept on the sofa, with a coffee table upended next to it to stop her slipping onto the floor. And her Dear Very Patient Son sleeping on the carpet nearby.

We had family dinner. She ate well. Looked soooo sleepy and was pretty silent. Maybe happy to be back.

"I went to hospital? When? Why?" was probably the stunner of the evening. Two weeks plus of experience gone from her memory. 

But the impact of those two weeks is right here and raw. 
Fury. tetchy, fractious, scolding, anger - at everything.

MOVE that clothes rack!
Why is that table there?
Why is that wheelchair here?
What's that?
Are those socks clean?
That man on TV.....

All of this with raised voice and anger.

It's very, very wearing. And she only came back yesterday...we are hoping this will subside. Apparently the hospital said she was more aggressive in the mornings.

Oh God we hope so. And we hope it gets less. If THIS is the new norm? It's like the dementia has scaled up by several notches.

And then.
She let us change her pajamas and diapers without too much fuss. Like a toddler - she let Dear Son kneel in front of her and she held onto his shoulders. I was behind her as we took off the clothing, she obediently lifted one foot at a time to let us undress and dress her - all the time chatting on about the name plate of the neighbor's house she could see thru the curtains... 

And 20 minutes later - she took off the hospital corset  and threw it on the floor...."I KNOW what is best for my body? What hospital? What doctor?" 

And then polite again; "thankyou for the flower. That's pretty". 

"Why is that piece of paper on the table? Is it mine? What is that cup?" with cold fury voice.


We are exhausted. It's only 10 am on Saturday.
Onwards into our weekend.

Thursday, 1 June 2017

Coming home.....for...???

Yay!
Okaasan will come home tomorrow.
And stay until Sunday afternoon. Then go back to hospital.

Maybe.

Big maybe....

Lots of negotiations between DS, hospital and day care manager. We have a cute, compact wheelchair and table, we have a special taxi booked, the carpet is back from dry cleaning....the clothes washed, every surface cleaned.
And it'll be a special welcome home dinner of fish.

Today at the hospital she walked all round the nurse station - twice! - with a stroller....an amazing change in ability. If she can do that, she can get to the toilet at home and she'll be fine.

We don't really want her to go back to hospital...but that's the plan, so the doctor can see her again on Monday. If she stays at home day service can arrange some physio care....

It's all stations GO.

We hope.

Amazing how she has made a great progress in physical ability. I wonder if she suddenly understood that demonstrating ability was the key to getting out? Before that maybe she didn't bother to stand or try - just said "Yes, of course I can stand" to the physio. Then realized that demonstrating that was her key to freedom?

AND what will happen on Sunday when she understands she has to go back to hospital?

Deep breath....we are heading into the weekend...

Wednesday, 31 May 2017

Too difficult for hospital...

The hospital is complaining.
They've asked us to take Okaasan home for a night. In the hope that it will ease her aggression/stress/anger.

Dear Son got the phone call yesterday and went in to talk to the doctor and nurses.
They said that the physical therapy is progressing. But she still can't stand or walk alone. So they have taken her to the toilet by wheelchair and lifted her on and off the toilet twice. And she is diapers, of course.

But. She is noisy and difficult. Banging her hand on the wall by the bed. Aggressive with the nurses. Shouting.

Of course.


They suggested she comes home tomorrow for one night. To give her (and them) a break.

We are in a whirl of wondering. And heavy feeling.

Will one night at home make any difference?
Would Friday afternoon to Sunday afternoon be better? 2 nights?
Will we be able to get her back to the hospital?
Is it actually NECESSARY that she goes back to the hospital?
Special taxi and driver with a wheelchair.
How to get a wheelchair into the house.
Toileting......
Should she sleep on the floor (as usual), or the sofa? Or we should get in a bed?
Toileting......protecting the flooring/carpet/sofa.....
Could she transfer to another, more dementia-experienced facility? 
Could she be at home, here - with a physical therapist coming every day?

Dear Son will be calling the day service manager today for advice....

His difficult bike taxi customer leaves today. Finally. He was looking forward to a few days of normality and rest. No chance.

Aghhhhhh...

This is a smallish hospital. Orthopedics. Mainly neck and back. Many elderly patients, of course. But they don't have special staff for dementia and psychological support. The nurses are busy.
As Okaasan's pain subsides and she begins to feel better - she is getting more questioning about her situation.... questioning which is frustration and aggression. She can't remember the calm reasoning anyone gives her and she doesn't do much to ease her own stress.

Anyone in hospital usually arranges their time to while away the hours. A bit of TV, a book, a letter, a visit, sleep, some food, physical therapy, checks...but someone with dementia doesn't. She frets and stews and stares at walls, listens to conversations....turns away magazines and the tricky TV earphones.....doesn't chat to other patients.....living only in the moment of self-unhappiness.

And it's coming our way...tomorrow or Friday.....

Stay tuned.



Monday, 29 May 2017

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.