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.

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!!!!!!
🙋

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.

Let's hospital.....

Okaaasan and me went to hospital. Oh yes indeedy.
A wonderful weekend of togetherness.

All started Saturday morning. In the toilet.
I'd had a party with students Friday night...eaten and drunk too much. Had an upset stomach. 
Thought that was it. Planned to spend the day quietly anyway with a Downton Abbey Season 3 and 4 DVD catchup. Felt a bit hungover.

Saturday passed. So so feeling. Quiet. Bit tired.
Lunch and dinner with Okaasan. 

Saturday night...Sunday morning.

Toilet hell. 
Both ends for me. Diarrhea and vomiting.

And the missing toiletmat told me Okaasan was having diarrhea too.

Sunday dawn I was in her room - weakly - checking for soiled towels and pajamas.

A kind friend whose husband has just spent a week in quarantine in the guest room with a stomach virus etc was advising me via Facebook thru the night and so I bagged up my and Okaasan's soiled clothes and two toilet mats and started the search for a hospital open on a Sunday.

I mailed Dear Son at the ski lodge. Told him that I was definitely going to get medicine. He agreed I should try to take Okaasan too. I'm 56 and can probably fight off a virus. She is 86.

I dreaded it. Really didn't have the energy to fight it out with her. Hospitals no no no...doctors no no....medicine....no no! I decided  to try and gently trick her into it. And if she fought me on it not to waste my dwindling energy on her.

She seemed fine. Of course didn't remember anything about her diarrhea. Even when I showed her the mat and pajamas covered with.....

At 10.15 am I entered her room and brightly suggested: "Let's go out! Nice weather today" She willingly scrambled up and started getting ready for "out". Hoping shopping and food. 

Instead we drove to a local hospital.
As we entered the parking area I made an excuse: "Oh, I was a bit sick last night, I need to get some medicine here, yes...yes...come in with me...waiting in the car is cold..."

And she came with me. No fight.

A full waiting room of zombies. Sweaty, dull, exhausted people. Influenza and stomach virus is everywhere here now. We registered and sat watching TV for an hour or more.
I had a temperature of  37. 4. Okaasan was 36.

Finally saw a breezy, cheerful doctor who managed to process us both within 4 minutes.

"Ichoen". Stomach virus. Not Noro Virus. Not food poisoning. Not infectious, unless you cough on people or share a dirty toilet seat.....and then eat food with your hands....

He questioned Okaasan, who agreed with the last thing suggested to her - without really knowing what was what.
"How many times did you have diarrhea? 4 or 5 times...?"
"5 times? yes, maybe..."

I was worse than her. Luckily. About to fall off the hospital chair actually.
They put me on a IV drip for 40 minutes.

OKaasan sat in the waiting room with all the sick people. She looked tired. She needed lunch. I needed my sofa and a blanket. But I couldn't think of easy food at home to give her, and I felt sorry that her trip out in the car was this tiring,. negative experience.

So, after we got our medicines I took her to lunch. Let her order what she liked. I ordered the smallest thing on the menu for me. And ate about 25%.

She was happy! Not a care in Okaasan's world!

THAT is all her lunch set. And still many Japanese people say - "Oh Americans/foreigners eat so much! The meals are too big"

Look at all of that. Soba noodles, 4 pieces of sushi, tempura and egg custard.

Made me feel ill just looking at it. But I managed to take away half the sushi and all of the tempura while she was looking at fallen bits of noodles on her lap. She didn't notice at all. Didn't notice the big space on the tray. Short term memory loss has its uses. The waitress looked surprised - specially as the sushi was hiding on the seat next to me. But I managed to make excuses and get it taken away.

And then. Medicine time!

"Okaasan, time for our medicine! Yes. You and me. The doctor said. Here you are. Yes. You should take this. You and I had bad diarrhea last night. very bad. Yes. We need medicine. I don't want to clear up the toilet again  this afternoon. Yes. Medicine. Here is the water. Here. Yes...here"

And. 

She took three pills.

Even exhausted. I was elated.

Mission accomplished.

Got her home. Got me to the sofa. Slept for 3 hours.

Went for a hair cut and gentle chat with my kind, sweet hairdresser at 5 pm.

Gave Okaasan small dinner and MORE medicine.

Ate half a piece of toast and dosed myself.

Slept for 10 hours.

Now? I still have diarrhea. Yesterday 70% energy. But I did classes and a magazine interview about Hokkaido tourism.

Okaasan seems fine. No diarrhea I think. My Friday night part students said in Monday class that they were all fine - it wasn't food poisoning from the hotel party food.

I'm still operating at 80%. And very careful what I eat and drink.

But. The GREAT takeaway from this is that I CAN manage Okaasan and a medical situation. I can trick her gently into coming to a hospital with me. And even into taking medicine.

That is a win-win.

Excuse me. The toilet is calling.

OD'd.....

Jimi Hendrix, Kurt Cobain, Judy Garland....Okaasan.
What's the connection?
Dirty underwear all over the living room?
Random shopping?


No. Drugs overdose!!!!!


But luckily, oh my God...luckily...Okaasan just got all bleary eyed and more confused than usual.....as she took 3 days worth of dentist drugs...in 72 hours.


Our fault. We didn't control her intake and she kept taking them.


Dentist on Tuesday morning gave her NINE pills - antibiotics to reduce the gum swelling I think - with instructions to: "Take ONE after meals".


Okaasan had that bit of information in her head ok, and worried and worried and worried about it.


Tuesday lunchtime - check. ONE.
Tuesday dinnertime - check. ONE.
Wednesday morning...um.....standing in the kitchen looking at the medicine packet..."I should take this after food, but I don't have breakfast, what should I do. Is it ok with coffee? It says after meals, but I usually eat at lunchtime....what should I do....it says....".
I suggested eating a yogurt and taking the medicine and she happily agreed and I left for work.
Okaasan by the TV eating yogurt. Medicine in front of her. ONE...?


Wednesday night. Family Dinner: "Do you have your medicines to take?"
"Oh yes, where are they?...here they are. Oh...almost finished aren't they!"


"WHAT?????? Finished???? How?????? You had SIX left this morning!!!!"
"But it says I should take one after meals, so I did".......
"Have you eaten 6 meals since this morning?"
"No, but it says here I should take them after meals..."


and on and on and on and on.
Yujiro got a bit angry with her. I calmed him down. Trying to explain and reason with her doesn't work at all. She doesn't understand...she forgets the first part of the arguement anyway....


Oh my God. We are so relieved Okaasan is ok. She looked bleary eyed etc. But she had been out for a late afternoon walk, and she ate a full dinner.
We guess she took SIX antibiotics during the day...the morning one with the yogurt, and then FIVE more.......


Learned THAT carers' lesson very well then. Okaasan hates medicines and hospitals, so she is never going to take medicine much...but anytime she does...we must be very, very careful. Must dish out the meds ourselves at the correct times...must...must...


Welcome to my world...again.
Beach? Cairns...already fading as a happy memory....

Take your meds, take your meds, take your meds, take...

Okaasan needs to take some meds.
And HE is the person who is going to get her to do it.
I am staying well out of it, at a safe distance.


The Thursday trip to the dentist revealed that there IS swelling and some problems with recent dental work and the dentist recommended anti-biotics and pain killers if the pain stays bad.

Katsuzo Nishi - Okaasan's health guru...

Well, we all know what Okaasan thinks about Western/Modern medicine!
For the past week she has been doing her predictable: No eating! Nishi-sensei's teachings tell us that the body heals itself if you don't eat!
Strange...because SOMEONE has been burning rice and miso in the saucepans at lunchtime - and I don't think it's the cats.
But she didn't come to eat dinner with us, or if she came she drank a bit of soup and nibbled on a pickle. Been nice actually, just having dinner without her (I AM a mean Oyomesan!!).


But, anyway. Dentist's orders.
Take these meds 3 times a day. After food.
Problem: She only eats twice a day...at the best of times.
It's ok! Drink some milk in the morning and then the pills!
Err...milk...she doesn't drink it.


So. Yujiro is displaying amazing patience and kindness - and gently encouragingly edging Okaasan into taking her meds. He got them down her last night after dinner (a few spoons of rice and some soup), and he got them down her again this morning (with yogurt, which as we all know isn't milk.....).
He is doing great - I stand in awe.


Left up to me? I'd probably wrap Okaasan in a towel, hold her head back, slip the meds in and clamp her jaws shut...like I try and fail to do with the cats.


Anyway - glad the dentist confirmed that there is a real problem. I was beginning to wonder how much pain Okaasan really felt and whether her not-eating-habit was just becoming a default response to invitations to sit down for family dinner.
And let's hope the Western/Modern Medicine does the trick.


And.....in other news...


And THIS is the really important news!
I have found my Australian beach hideaway for September. Just went crazy with the credit card online this morning.....the holiday I have been promising myself for the past 2 years...thru all the shit at hospitals and funerals and house-clearings and airports and stuff....ONE DAY I WILL GET AWAY FROM THIS AND SIT ON A BEACH.

Here is my beach hotel...Melaleuca Resort Palm Cove.

Expensive - yes.
 Necessary - Yes! 
Wonderful? Oh YES!!!
I've got some money coming (finally) from Dad and Jane's wills...and this, this my friends, will be how I am spending some of it. 
Dad and Jane would love this place and I am sure they will be there with me in spirit watching sunsets and dipping their toes in the pool....

Roll on September....................................