Okaasan's Care Home!

Just writing that title makes me happy!!! :-)

Forgive me if I break off every now and then to go do a happy dance....

One stage of Okaasan and Me life is finished, and the next stage is in motion.

Wednesday we went back to the hospital/care home to check out various points, got shown round by 3 staff...bathrooms, rooms, recreation room again, huge confusing discussion about financing (even the people working in welfare in Japan are confused by the government's latest tweaks)...and finally...

We were standing in the recreation room - when Dear Son said to me:
"So? What do you think?"
"About here? It's good. It's got everything. Yes, I think we should choose a room..."

And he agreed. The staff laughed, because it was obvious who wears the pants in decision making in this couple, and we all went back upstairs and looked at the three vacant rooms. Proximity to nurse station, wheelchair toilet, view, light...

And decided on Okaasan's room :-)    :-)

One of the smaller rooms, but big enough for bed and furniture - that we will rent and bring from home. A view of an apartment building, a bit of the city and mountains. Next to the toilet. Within sight of the nurse station.
The atmosphere on a weekday in the whole place was different: residents, families and various care workers around. A gaggle of old ladies watching TV, an old man sorting thru newspapers and more mobile residents taking walks around. It felt all good.
Her floor has about 15 rooms, a lounge with TV etc where that floor residents eat together. Lots of toilets, bathrooms. Downstairs is the recreation room with exercise machines and a central table where handicrafts etc take place.

It's not Florida. No garden. Just a nicely decorated tower block in the city center. But it is light and clean. I hope Okaasan will settle into life there - her own room with things around her, the lounge with the TV and outings with us locally.
He chose downtown because it will be easy for him to go before or after work in summer. In winter I can get there on Tuesdays after work, and by car at other times. There is a hospital in the building if she needs help in any way.

After the room was chosen we went downstairs again and he filled out the application forms. He looked knackered after it all. I was doing happy dances in my brain - finally!! Finally! - but we quietly went out separate ways to work. Had a quiet dinner and small discussion that night.

Okaasan is going to move from our home and daily care to a care home.

Never thought I'd be able to write that!

When? In the next 2 weeks maybe? Lots of official paperwork to be done.

I've started thinking what things from her room here at home we should move - and we already started to make plans to move my English school here. have to ask the house owners etc and make plans for THAT. It'll be interesting too see which of my students reads this blog and understands that the school may move....so far students have heard me talk about moving Okaasan, without making the next-thought-step: what about your big house?  It's a home we rented for three people to live. far too big for just two of us - and I will be very very Home Alone here this winter.
But moving the English School will be financially a good idea, and will use the space.

I haven't told the cat yet. He thinks the room off the kitchen, the blanket, the sofa....all his....

Shopping for a care home...

Sitting nervously on a sofa to be interviewed by a care home.

Who is interviewing whom?

We are explaining our candidate...her needs and abilities.
The care home staff is explaining their services and systems.

Somehow we hope to find a match.

Yesterday we went to visit one place, and there are two more this weekend. Walking around looking at bedrooms and day lounges, dining rooms. Checking things like staff numbers, night care, recreational activities, medical services, light, TV.....my Japanese vocabulary is expanding into new areas!!

The first place was good: warm,welcoming, nice big rooms that families are encouraged to furnish with familiar things. Small communal lounge with TV and friendly feeling. 4 times a month entertainment or recreational activity event. Weekly in-home activities like singing or handicrafts.

But. But...

* no physical training room or programme
* no sunshine in most of the rooms or lounge, because it was downtown and surrounded by buildings

Most of the residents we saw were in wheelchairs and we REALLY hope Okaasan will soon (next month?) be up and moving around with at least a frame on wheels. We don't envision her going on and on and on in a wheelchair...we still hope she will be walking again...at least inside, with a walking aid.

Maybe a bigger home is better? A place where - when she IS walking - she can walk round and round? Or a place in a wheelchair that she can GO somewhere? Like now in the hospital we go to the 5th floor for a view, we go to the training room, the courtyard garden, the day room....she isn't (yet) a non-thinking human in a wheelchair.....

It was interesting. You don't know what you want, what is necessary until you start looking. So we will continue looking. We must get her into somewhere by the 3rd week of November, before DS's ski work starts and he is out of town...

The hunt is on!! And yes....I am getting giddy with the excitement of having winter of freedom...absolutely giddy.
So are the cats...I've started letting them into Okaasan's FORMER room. Now I am using the room for drying clothes and wintering houseplants. Yesterday Chi-chi claimed OKaasan's sofa....where there are some odd socks and coathangers...and he curled up for a long sleep. And I let him.
Our home life is changing....

Visualize it....and it will, will come about...

Social services have reappraised Okaasan and the level of care she needs.

Moved her up from Level 1 ...to Level 4....of a 7 level gradient.

I don't know the details of that. But I'm guessing it is good for us all. Good that we will qualify for more public care and finances, and good that DS will really see his mum has changed this year and needs greater protection and care.

She has been Level 1 since living with us and being under the social services system. But the events of this summer - God it all seems so long ago now - the fall in May and the broken back bone, hospitalisation, dementia explosion and subsequent medication and physical decline - ALL of that has changed her.

I know it.
DA knows it, if he is honest with himself.
Now social services have given the official recognition of it.

We went to see Okaasan yesterday.
Had a slight panic when we couldn't find her in the hospital for 5 minutes - a mix up about her being in physical therapy, or not - and actually she was happily sitting in the day room with the TV..

But there she was. All smiley and content. We wheeled her to the 5th floor of the hospital and sat with her and some canned drinks - pointing out the deeply boring parts of the south Sapporo suburban landscape, the pictures on the walls, the packaging on the  rice crackers...just making a little light, friendly feeling for a lady who doesn't know a whole lot.
She knows us. She knows Hokkaido. Doesn't react much to chat about old familiar things - Dear Son's blind customer who is in town from this weekend again...autumn flowers...

It's ok. Just an hour of chat and smiles...

We replaced her dirty clothes with clean and secreted into the drawers a new, long-sleeved pink blouse that I'd bought - I think I know her taste will enough now and I don't think she will be so aware of what clothing is her's or not...anymore.

Then we had a toilet trip. The 3 of us squeezed into a smaller than usual toilet - with the  wheelchair and our bags....he was holding Okaasan and I was reaching around her for her pajamas and diapers.

And finally we delivered her back to the day room where patients were being wheeled in and arranged at tables for their lunch. Ten or so elderly people, in various states of awareness around tables. They don't interact with eachother so much, they watch eachother and us...we smile...Okaasan looks at the TV, and us...and around the room - she isn't too bothered.

And then food arrives and her focus shifts...and we wave bye bye and slip away.

Dear Son says he understands and will start talking to social services about a care home for Okaasan. He KNOWS she can't come like this....he says he understands.

So.

Onwards.

Blogging again :-)

YES! STILL HERE!!!

Actually I wasn't. Had a 2 week holiday in the UK - ate everything I saw, drank whatever I could and talked with lots and lot of people really really fast.

Happy trip.

Came back to Japan and had jetlag. Then a headcold. And a pile of teaching work and tourism consultancy work (gonna get paid by Japanese TV to go and eat season sushi :-) someone has to do it....)

Ok.

Okaasan.
Still in hospital.

When I last bothered to write this blog she was in a bad state: with a fever and a mystery knee pain. That lasted more than 10 days. Her energy went right down and she didn't do any physical therapy. So, of course, her muscles got weak again.

While I was away she started to improve. Dear Son continued visiting the hospital and finally in the last week, she has started to do physical therapy again. Much less that before - short distances. But her speaking voice is stronger and she seems to have turned back on course.

So.

While in England many friends asked me about my life with boyfriend's mother. And what is the future.
I said - I can't see her ever being able to come home and live with us again. I hope she will go to live in a care home. But boyfriend isn't at that point yet. In Japan it is a recent idea - putting elderly family members into the care of strangers.

So. I came home and wondered how to bring this about...

I talked to him. He agrees - the likelihood that she is going to come home in the coming month is zero. We couldn't safely leave her alone in the house. From the end of November he will be ski teaching.

It's time to start looking for a place in a care home for Okaasan.

I used two arguments....which I hope will persuade him...or at least give him a feeling that it is the best thing to do for all of us....

* Best for her.
Now she is sharing a room with an even more demented, and deaf old lady. Who shouts. Okaasan's TV is usually on a bedside table that is pushed back out of reach and vision. Okaasan herself doesn't have the decision-making ability to ask someone to set it up for her. When someone asks she says "Oh, I don't watch TV", but of course she does. Hours and hours. The nurses clear it out of the way. I think in a private room in a care home we could set up the TV exactly how she can watch it easily from her bed, or a chair. She could have all her stuff around her. It would be "home", not "hospital bed". I think her hour to hour life would be happier.
When we come to see her she will get 100% of our attention, not the usual harried conversation of tired, working people.
She will be safely monitored and at far less risk of falling again.
She will have all the activities - the singing, the seasonal events, the hobby things....a community of activity. Not just us and the cats.

* Best for us.
We can get on with our lives knowing she is safe.
We - and really I - don't have to worry about being late for work etc when Okaasan suddenly refuses to go to day care...I can imagine the driver coming and me trying to get her dressed to go out...her refusing and the care unit van blocking a snowy road....lots of staff and I try to get her out.....and my work responsibilities pressing.
When we see her we will be happy to go and chat. No stressed.

So. Let's see.
I think it will be hard to start this process....Dear Son seems to think it will be easier.....just a matter of applying and then getting her to move to another place in the same, or neighboring, building.

I doubt she can get a room in the same place. It is a hospital and care home - but it IS a city wide company, and the fact that she is already a patient in the system must be good. Japanese systems take forever to unwind....it won't be easy. 

Anyway. Cross your fingers!!! It may be happening......but it won't happen at the speed I am hoping for, that is for sure. I will have to keep on his case...can this all happen by the end of November??

Watch this space...

Physical ability

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

Really interesting - stretches and massages, then:

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

All of this while wearing heart rate monitors.

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

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

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

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

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

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

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

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

Tectonic shift in thinking

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

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

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

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

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

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

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

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

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

Hmm...

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

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

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

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

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

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

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

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......

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.

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.

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.

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.

Boning up on...vertebral compression fracture.

That's what Okaasan has got.
My new word of the week. Or, collection of words.

This week she's got one. And she has had two others - sometime in the past. 

Kind of amazing this. I didn't know that elderly, and specially women, can have spinal bone fractures as the back bones weaken and crumble. And some people don't even know it's happened, they just feel a bit sore in the back for a day or two...and carry on.

Okaasan has falls. Maybe about two a year...or so. The front door step. While out walking. The subway station area. I guess there is damage inside that we don't know about.

Dear Son has told the doctor that they should get her fitted up for a soft-type corset and get her able to stand and walk the toilet again - and then send her back to the living family. Hopefully after the carpet comes back from dry cleaning.


I visited her yesterday, we both visited her today.

She was in a much better way mentally and physically. Able to sit up in bed and wheelchair. Had enjoyed a shower by the nurses on a special shower bed. Had clean hair. Enjoyed ice cream and bits of hospital food. Watched a bit of Tv.

But she IS ansty. Wants home badly. She told me yesterday she was going to leave - BIG whisper about that - without the doctor or Dear Son knowing. Don't think she actually will escape from the hospital, because she is there in bed and has no idea where to go from a 4th floor ward!!

She gets stroppy with us for speaking too loud, or too quiet. Or other people having visitors. Or the food cutting style. Or...whatever. 

But much brighter. Stronger. Less pain. maybe.

So. We enter the second week since the accident. Hope they will get her up out of bed this week. I can't go to visit so much because of work, luckily Dear Son is in that direction every day.

Thankyou for all your comments and support! Real people are out there. It still surprises me that this blog thing reaches people out there in internets-land. I'm bad at replying to comments, but I do read them and enjoy. Thankyou.

Going to sit myself down with a blue cheese salad, some alcohol and the final season of Breaking Bad on Netflix. So ends my week :-)

Staring at walls

Okaasan in hospital.

Not a happy thing.

She doesn't remember the fall, doesn't remember the pain - until she tries to sit up or move her body....

so wonders - endlessly - WHY AM I HERE?

WHY???

We expected deterioration in her mental ability with such a dramatic change of location/people/routine.

But even we were shocked at the physical change in her. Okaasan's speech is slurred and sometimes incomprehensible. Of course she suspects the nurses, doctors and other patients of spying on her and the family - told us that in big whispers - that "they" are bad people. Old, familiar paranoia is back to the fore.

The slurred speech and rambling words. That was a surprise. Even here 4 days ago - as she lay on the carpet in pain etc - her speaking ability was clearer.

Yesterday we did a joint visit. Okaasan was on the bed staring at a dirty, stained grey wall. The TV on the bedside table was turned in another direction and the magazine was unopened on the side table. Dear Son said she had watched Tv before, but then dismissively told the nurses "I don't need that", so they'd maybe moved it away from her.

She DOES need TV. It's her everything at home. It's life and entertainment. Companionship.

We got the nurses to move the furniture back into position. We guided Okaasan to her handcream to attend to scratchy feeling on her leg where the hospital diapers were rubbing her skin, we gave her drinks and chat...and...

There are three other elderly women in her room. The others looks more mentally alert. The room is near the nurse station - from where I am sure Okaasan listens to every conversation and thinks they are talking about her.

She is eating the foods. She is sleeping. She can sit up a little, if the bed is moved into position.

Today Dear Son will meet the doctor and hear what he thinks. Was it spine damage, not exactly a break...maybe a crunching together? A nerve is caught?

The house is so strange without Okaasan in it. Feels huge and empty.

I came home Friday night. Dear Son was working late.
I threw all the left overs in the fridge into a frying pan, added cheese and ate it upstairs in front of the TV. No need to plan a healthy dinner at 7 pm.
Years of having my daily routine guided by Lunch at 12. Dinner at 7. Must Feed Okaasan. Must Check Okaasan. Now freedom....strange.

We really, really hope they don't keep her in hospital a long time. get a corset fitted, get her sitting and standing and walking again. Get her to come home the end of next week?

What more is necessary for an elderly lady? As long as she isn't in great pain. She doesn't need perfect physical ability. She needs a livable-with feeling in her body.

So.

From kind of looking forward to the day when Okaasan might go to hospital and experts would take some of the burden off our shoulders - I am already missing her and hoping she comes back to us soon.

Strange that!

And waiting...

Waiting for the miracle self-healing thing to work.

She is still on her side on the carpet, under a heated blanket.

We are giving her water to drink, and yesterday managed to get her to eat a small dried persimmon and a bit of a rice ball.

Interesting. The whole "I'm sick so I don't eat" mantra was less yesterday. I put a nicely warmed up rice ball on a plate and put it 10 cm from her nose..

"What's that? I ate, didn't I? I ate dinner, didn't I?"
 Really, she had no idea whether she'd eaten or not - and once the food was there within easy reach and she could put some in her mouth - she did :-) 

But we are changing her diapers because she hasn't sat upright or walked since Saturday night. Now it is Tuesday morning. Diaper change was fairly easy. She just lay there and let us do it - a messy job...but we never had a baby, so this is our shared couple-experience...

By coincidence: last night student came to class and told me that over the recent public holiday her 81 year old mother had tried out a family member's balance ball...at 11 pm!!!!!!!!!!!!!!!!!...and lost control of the ball - falling 5 steps down the house stairs!!

She was badly winded and in pain. But finally managed, with help, to stand and walk to her bed. Next morning she couldn't move at all and was taken to hospital. Broken lumbar. Is now in hospital 3 weeks and wearing a corset.....

Hoping......it isn't this. But I wouldn't be surprised.....

I told Dear Son this story and we talked a bit.
He said that if she isn't moving any more by tomorrow...he will take other steps...

goood.

Waiting....

Diapered.

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

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

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

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

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

But success.

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

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

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

Hobblin....hobblin...

Still hobblin.

I don't know. Sometimes I think it is getting a little better...and then I move in a random way and there is a lot of pain. I can't put my leg straight. There is still knee swelling.

But sanity (and exhaustion) - I have gone back to work. With big help getting there etc.
Telling the same old story over and over again. Actually it's a good judge of student's real ability - how much they can ask and find out about the situation from me. Should use a Faked Disability as a level check for future students????

Okaasan.
Her reaction.
Well, of course she sees me hobbling around with crutches and has asked three times why.

Ski accident.
Knee injury. Hurts

Oh? Skiing?

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

And that is about that.
That lack of empathy really. I could be wearing a bright yellow sweater with live kittens sewn into the sleeves....I think there would be the same response.

None of the: where/why/how....doctor advice?....shared tales....offers to help.

It doesn't matter. I GET all of that from wonderful students/employers at the community centers and my man....but it is interesting how she responds to obvious injury and pain and hardship in another.

Last night she watched me wash up all the dinner plates - sitting on a chair at the sink, with crutches to my left.....and there was no offer to help....nothing. Dear Son was chatting and she was responding....and nothing....usually Japanese women rush to help you even before you have an inkling that you might need ANY help....but no.

It's ok. Just a thing.

A shitty thing.
Dear Son had the full shitty experience.....he is a wonder...he cleaned up the soiled area, washed the clothes...washed his mother's body AND got her to wear a paper diaper.

He is a good man....

So. Spring is arriving. W"arm sunshine. Melting snow. I'm inside.

Going to try driving tomorrow to work. Can get to the classroom with the center staff's help. TUesday MRI.....Thursday MRI result.....

Heard a horror story from a student:
She fell while skiing a few years ago and drove home with pain.
Had pain the following week and went to the doctor. Got some pain killers.
Had a quiet life....but walked the dog and went shopping.
3 weeks later - THREE WEEKS! - she went to a different doctor and had MRI and they found the ligament had broken in her knee....operation...in hospital for a month..physical therapy for three months.....

Oh God. 

But now she is skiing again :-)

I will return. I will return. I will.

Turning pro...

Carer's daydream.

When this is all over...yes, when Okaasan dies....I imagine what we'll do.

What I ACTUALLY imagine for the day she dies is a lot of confusion...specially if I am alone here and find her under the kotatsu, with the TV blaring and gone. If Dear Son is away in the mountains I guess I'll just have to leave Okaasan in situ and call him to come start the whole process of police? funeral company? whatever whatever (he is having a practice run with that now after his brother's death).

And cheese fondue.
I actually imagine that our first dinner without Okaasan will be cheese fondue.
Yes. I'm that bad.
In my mind cheese fondue represents our lives Before Okaasan. What we could eat when she wasn't living with us. Of course, we could eat it now and across the table give her something healthy - but my fondue daydreams represent so much more than cheese, flour and wine. It represents our old days. Freedom from responsibility. What we could enjoy at home before we had to consider an elderly Japanese lady and her needs.

Anyway.

After that...I imagine we'll have to decide what to do with the next stage of our lives. Stay here in this house? Move? Move to a ski resort? Open a guest house?

Or.

Become a professional carer?

This is actually the point of this blog. Not cheese fondue on the night an old lady dies.

Caring skills. I'm getting pretty good at this - I DO say so myself. I could do this and get paid for it. :-)

I'm basking in Carer Confidence after this weekend's Bath time.
It really all went well, with a few minus points, but I'm really getting the hang of this. And Okaasan followed directions and was happy and didn't slap me. Progress.

Start the bath running. Heat up the changing area. Set out a chair, pink towels (not the frayed at the seams one, otherwise she'll fuss about sewing it).
Tell Okaasan it's bathtime.
Encourage her to switch off the TV and go to the bathroom.
She undresses herself.
Check water temperature.
Leave her for a bit.
Check the water temperature.
Go in about 4 more times under different pretexts - now I am SO much better at just walking into her bathroom. Bright smile, chat. Most normal thing in the world to be standing with you next to the bathtub.
While she is bathing - do a quick clean of her room. Grab laundry.
After 45 mins start encouraging her to get out.
Keep at it.
And again.
Finally start talking about "lunch is ready" and gently tapping her hands and then the bath rail to show her HOW to pull herself up out of the bath.
Direct her with gentle finger taps to move her bum around so she is in the correct position to stand.
Repeat.
Start draining water from the bath.
Finally, put my hand under her armpits and lift her up to start her standing.
Let her get out of the bath.
Sit her on the bath-stool. Wash her hair. Chat.
Help with towels etc, back to her room.
Toe nail clipping.....and under toe nail scraping (wow! 86 year old body still growing!)
Hair drying....encourage her to use the dryer.
Give her water to drink. Time to cool down.

Start cooking lunch.
All of that between 9.30 and 11.30 am.
She was mainly happy and smiley. Didn't get stressed or angry. Didn't slap my hands or shout. Only screamed once - I give myself minus points for forgetting to warm my hands before touching her body in the bath.

Pretty successful.
A year ago I still wasn't confident about even going into the bathroom with her.
Now? Old pro!

So. Should I forget the daydreams of owning a guest house in a ski resort and welcoming guests from around the world? Should I think about opening a care home for seniors?!!

Probably not.
It's one thing to do it for someone out of love for their son. Family duty. Easing the guilt I feel because I didn't do much caring for my own parents in the UK. It would be a whole other level to do this day in and day out for strangers....I admire people who do that SO MUCH.

Pat on the back - with warm hands - for carers everywhere. We are doing a great job. :-)

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.