Agony walking

Full-on Oyomesan duty yesterday.

We decided that Okaasan would never get downtown to the dentist on foot/train. So I volunteered to take her by car and get her back home in time before my 11 am class.

Oh the agony! For both of us.
Her walking was really painful to watch...and of course painful for her.
She crept down the steps by the front door, holding onto my shirt fiercely for balance...and crept to the car....out of the car, up the curbstone and into the dentist's building etc. Into the chair, out of the chair, to the waiting room....more agonizing steps....to the toilet etc.

Okaasan has always been very nimble on her feet, trotting around, up and down stairs - so this was all kind of shocking.

I brought the car as near as I could to the building front, but Okaasan couldn't get down the curb....I walked her a little further along to where the pavement and road met on an almost flat section...and finally into the car...

"Oh, down there is Doutor Coffee Shop! I could go and have coffee!"
"You? Go to the coffee shop? No way! You can hardly walk from the front of that building to the car, I am certainly not leaving you downtown alone!"
??????????????? Just amazing. She instantly forgot the preceding 15 mins of inability and pain and actually wanted to set off on her own downtown?

And 5 mins later as we were diving thru the city center:
"Oh, you can stop here, I can get out here...."

No Way.

The good thing, is that having said these off-the-wall things and been denied, she doesn't push the topic and try and try again, it's more like a passing sentence - unrelated to the current situation.

So. I got her home safely and crept up the steps inside again. Threw down the lunchbox I'd bought for her at the station, and then I galloped to work. For a rest.

And so it goes. Really if this leg pain continues all next week too - I hope even Dear Son will think it is time to go to the hated doctor/hospital. All the time she isn't walking her leg muscles are getting weaker and weaker, which will make walking more dangerous.

* Meanwhile, I AM taking actions about MY leg pains. I had 3 weeks with no pain, and was beginning to think acupuncture and stretching was conquering it. I even cycled to a jazz festival last weekend. 
It was probably too much. The twinges in my right thigh have come back.....so I am returning to twice a week acupuncture...and feeling a bit depressed...

Ongoing...with help.

Okaasan's painful leg drama is ongoing, but at least now we are sharing it with the daycare staff.

They came on Tuesday and checked that she was alive. She sat slumped under her heated table and grudgingly showed the staff her legs and knees. But she was lively enough.
Tuesday late afternoon she actually said she planned to go for a walk, but Dear Son stopped her because it was rainy and windy.
She ate lunch and dinner ok.
Then yesterday she started talking about going out - and I was encouraging her - from 4 pm onwards. Then she lay down on the carpet and dozed again...and again.
Finally at 6.30 pm she was talking about going out and we stopped her again: dark and dinner is in 30 mins.
We thought that was all a good sign - showing that she wanted to go out.

But this morning. Day care? Today?
No thankyou.
Dear Son was his usual insensitive self about asking her.....if she gives some rambling, confused answer he turns on his heel and walks out saying: "I don't understand you, you aren't making any sense!". It's a huge help to a dementia patient. Not.

Day care called for the Thursday outing and then sent the staff round at 9.45 am to see what Okaasan was up to. When she arrived I was in the last 10 mins before going to work - rushing around with a towel wrapped round me and cooking Okaasan some lunch for the flasks on the kitchen table.
The daycare staff tried to get Okaasan to go for a "little walk in the fresh air", but she refused...said she would just sit and the pain would go away, as it had in the past. Said she wouldn't eat anything, and the body would get better on its own etc etc
The staff were lively and determined, but Okaasan wasn't playing ball and they didn't force the issue.
But Okaasan was walking round her room when the lady came (well actually she had been crawling round her room on hands and knees JUST before), but she was more physically active.

And so. They left again and grinned understandingly at me...

It IS good that someone else is in on all of this (apart from you lot of course!!), some kind of person with training....who will monitor the situation.

Just have to let her be and see what happens. Tomorrow there is a 9 am dentist appointment. I look forward to seeing how Dear Son is going to get Okaasan to go to that.....

The irony is: sometimes she doesn't actually REMEMBER the whole pain-in-the-leg-drama at all. Yesterday afternoon I suggested that she shouldn't go too far for a walk because of Monday night's events - and she didn't remember anything about the station staff calling Dear Son, coming home by taxi and being carried into the house on a garden chair...and hopefully nothing too much about us shouting at her...

Sigh...

And yes, I forgot to write it. Understandably. Monday night was also the 4th anniversary of my dad's death. In fact the 4th anniversary of getting that phonecall from England to say the postman had found him on the living room carpet. They thought he'd died 2 days before.....
4 years ago. Seems like a lifetime. So much has happened, good and bad. So much.

Rheumatism drama

Had ourselves a bit of a rheumatism drama last night.

Okaasan had a bad rheumatism attack at the subway station on her way home from downtown. She couldn't stand or walk. The station staff rescued her in a wheelchair and called Dear Son.
He brought her home in a taxi.
Then they stood in the street outside the house - he holding onto his mum and trying to help her walk into the house.
She couldn't. Kept shouting out about pain in her legs.

I arrived home from work in the car and found Mother and Son standing in the street clutching eachother.

Dear Son and I then put our hands under Okaasan's arms and slowly, slowly walked her across the street to our garden.

Then we thought it would be easier for her to get into the house thru one of her room windows, because it's 30 cm off the ground - kind of easy to sit and swing her legs round...maybe.
But we'd forgotten about the slightly raised area in front of the window. Followed an agonizing, stressful, panic-filled 10 mins as the three of us looked more and more like a version of that game Twister.
Okaasan, moaning and shouting at us in pain, was hanging onto the window frame and one foot was stretched waaay back on the lawn, her whole body swaying to the right, while Dear Son tried to escape the garden hose loops and I kicked away the garden table.
One cat miaowed at us stressily from inside.
It was a right scene...

It would't happen. She couldn't pull herself into the window. We couldn't lift her.

Then we got the garden chair and got her to sit into that - and we CARRIED her into the house on the chair! In stages, cos we both have bad knees......

She claims it is rheumatism. Says she had it years back. The remedy is to just sit and not walk. And of course - not eat.

So she sat. In the garden chair in her room in front of the TV.

At 10 pm we were getting ready for bed and we wanted to see if she could get up and walk, even a little. Worried of course about nighttime and toilet.
Okaasan got very defensive and angry with us.
"I can do it! I don't need help! Leave me alone!" etc etc.
Finally we were shouting at her to force her to stand up and SHOW us that she could walk. She did for a moment, and then crashed back down onto the sofa.
Very angry with us.
We were angry. 
I shouted some home truths at her. Dear Son swatted her on the head.
It wasn't our finest moment as carers and cared-for.

But she COULD stand and walk.
We left her alone. During the night she took off her own clothes, went to the toilet, lay down again on the carpet.

* This morning was day care day. Of course Okaasan didn't want to go.
So the day care staff just came to check on her.
She is brighter and less angry this morning, and chatted to the day care staff about long ago leg problems and pain. Said she was just going to stay home on the carpet.


I don't know anything about rheumatism.
Her knee looks swollen. Yesterday her feet and ankles were swollen.
Of course, there will be NO doctor for this old lady.
She will be the authority on her own care.

Sigh...................

Oh. Yeaaaaahhhh....

July 2014
Brazil. Rio!
FIFA World cup.
That's a little soccer/football event.......

Air tickets booked!
Final game tickets no-hope-in-hell applied for in a vast FIFA controlled lottery.
Hunting now for somewhere to stay on Airbnb.
Me and the man.

Oh YEAHHHHH!!!!

11 months to worry about cats and Okaasan.

Weather I will or weather I won't.

.....rain, rain, rain....................

End of the summer holidays and it rained on and off for two days. Hot, humid rainy. Would stop for 5 minutes and then another downpour.
Luckily we were just home watching TV and had no plans outside. But sad for all the people trying to camp with kids. Trains were derailed in mudslides, villagers killed in parts of Japan. Grim weather.

Okaasan hardly connects to the weather.
Beyond her 24/7 vision of the world from the carpet in front of the TV, she sits and watches TV programs about mudslides and calamity, but doesn't connect it to what may be happening outside in the street here.
When you can hear rain crashing down against the window etc, she'll ask several times if the fan is switched on, and then repeat and repeat that question. Our answers about rain, don't lodge in her mind.

So at 5.30 pm on Saturday she decides to go for a walk. Ignores advice that it may rain any minute, ignores/forgets advice about an umbrella...and sets off.
5 minutes later the skies are streaming down again.
We are not sure if she actually TOOK an umbrella, so use the GPS to track her to the local Macdonalds. Then phone to check, then go in the car to pick her up and bring her safely home.

And again on Sunday. This time she took the umbrella, and came home in another downpour.

At least it is only rain. Winter and the snow and icy roads are harder.
One day we'll have to do locks on the front door, I think.

* Wrapping up stuff - Okaasan should work as one of Santa's helpers, she LOVES wrapping stuff up in old newspapers. Usually food that she doesn't want to eat. But yesterday a dirty plate lunchtime was wrapped in newspaper and placed on the carpet by the sofa.....have to check everyday to see what is wrapped up here and there.

* Went to see Quartet, the Dustin Hoffman-directed film about a retirement home for singers. Second time for me. First time for a friend. Pauline Collins' character Sissie and her dementia is spot on - the repeated little phrases, the checking, the fierce identification of "mine" with her possessions, the running around, the change of expression. I wonder if the actress has someone with dementia in her family?

YES! Her own mother...Internet search found me this in an interview with Collins about the role:

Collins, best known for her award winning performance in the 1989 feature Shirley Valentine, once again brings a lovable character to the silver screen with her portrayal of Cecily “Cissy” Robson, a retired mezzo singer “just beginning to tip-toe down the dementia road.”

It was a somewhat personal role for Collins, whose mother also suffered from the illness.

“(When I got the role) first of all I thought of my mum, who had it, and then I thought how my mum was very joyful, all the way through, and maintained her sense of humour ... and then she dipped into another world. So I wanted that for Cissy,” Collins says.

“I wanted the way that she conceals her dementia a lot, because I think a lot of people do that, especially in the early stages, or don’t readily admit that they might have it. Because we’ve all done things where we’ve left our glasses and don’t know where they are. So I wanted that element that everyone can recognise in themselves. And also, the sweetness of her character which was still there.”

"Brush your teeth time!!"

Start as you mean to go on with a new regime.

That meant I reminded him, and he then brightly told his mum to brush her teeth.

And she laughed a bit, but got up off the carpet and went into the bathroom to do what the dentist ordered.

So. Day 1 good. We've thought it best to do it in the morning, when we are in the morning drink/breakfast/go to work routine. The end of the day is less fixed - with Okaasan coming home at different times and us trying to escape the very-boring-dinner-table-conversation by leaving the kitchen while she is still picking around at the food.

So. Let's dental care.

An order from the dentist...

Okaasan's dentist did a great letter to her.
Good big print. Clinic headed notepaper. Polite but firm Japanese: Recently you had to come for dental treatment many times. Your teeth are in a bad condition. I worry about your general health. You MUST clean your teeth twice a day, otherwise dental problems could spread to other parts of the body. Your right foot might fall off.

Well, not the last part.
But the rest.

Dear Son gave it to Okaasan this morning. She laughed a little nervously and read it, several times. Then put it back in the envelope and back on the table.

Hmm.
We have taken color photocopies of it, so if she loses the original we can wave other versions of the letter at her.
But, still is the problem of actually physically making her clean her teeth more. Making her get up off the carpet by the TV and 6 steps away to the bathroom to brush her teeth.
She's an expert at saying: "I've got that/done/that/seen that" - whatever our questions are. So when we ask "Time to clean your teeth today!" I can see she will endlessly say: "I did it already".
And then she will stay in front of the TV and the tooth care program won't be any better.
Have to be tough. Tougher.

She goes to the toilet several times a day. She goes to the bathroom to wash her face a) before going out b) before lunch/dinner. Maybe we'll have more luck of getting the tooth cleaning done when she is up and moving around in the kitchen/toilet/bathroom area?
Or we can ask day care to start pushing on the teeth cleaning too?


I used to have a friend (the one who dropped me cos she couldn't deal with my stressy change of life after Okaasan came to live with us...) - anyway, SHE used to clean her cat's teeth by holding the animal down over her knees, wrapping his paws/claws in a towel and brushing into the jaws of certain injury.
I'd like to try  something similar with Okaasan.

* Anyway. Life is ongoing. It's hot. I'm on sort-of summer holidays here. We've had beer garden trips with Couch Surfing guests, I went kayaking again and have got seriously hooked - thinking of buying my own kayak now, Okaasan is trying to smuggle chocolates to daycare in multiple bags...and I am finding them and eating them.
Onwards.

Ahhhhhhhhhhh.....all warm and fuzzy.

That's "Ahhhhhhh!" as in cute.
Not "Agggghhhhh!!" as in what-the-fuck-has-Okaasan-left-rotting-in-this-plastic-bag.

I took Dear Son and Okaasan to the subway station by the car Monday morning as they headed off for another dentist trip.
They got out of the car, I started looking in my back mirror and to the side - to pull back out into traffic.
A movement caught my eye. I looked back at Okaasan.
She was waving at me and smiling, And waving.

Ahhhhhhhhhhhhhhhhhhhhhh. So cute!
So different from the stressed out, angry lady on Saturday evening in BBQ Hell. So different.
It really is like living with two different people: the happy, friendly, almost-childlike lady who giggles and laughs; and the stony faced, sharp voiced old bat who wants to savage your ankles.

Dear Son took a box of cakes to the Korean restaurant and thanked them for caring for Okaasan Saturday, and bringing her home. They said they realized she was confused when she tried to pay for her lunch and couldn't locate money in many purses and pockets in her handbag, and they worried that she couldn't find her way home. So they chatted for hours and brought her back.

And onwards. Bloody hot here now. Some days are over 30 C. Hot for here. I bought Okaasan cotton long gloves - Japanese women wear them to cover their arms from sunshine. Recently OKaasan has been going out in a T-shirt AND a thick, long sleeved jacket - and looks so hot and tired when she returns. I wonder if she will use the cotton gloves?
Can but hope.

* and yes, I DID see that story in the Japan Times about acupuncture-is-it-worth-it. But I'm a believer, for now, so I am going and getting needled twice a week and I'm happy the Japanese health insurance is helping pay for it. I've had fewer spasms recently - so I'll take the benefits of whatever.

Celebrating 83 :-)

After Saturday's shenanigans we should have locked her up in the small room and thrown away the key.
But we are good people. So, we didn't. Reserving that option for another time.

Yesterday was all smiles and laughter as we helped Kazuko celebrate 83 years of eventful life.

First there was lunch at home with Darling Oyomesan.
Then there was a trip downtown to a surprise footcare salon place for 40 minutes of massage and footcare (all ok apparently).
THEN there was dinner in a big busy sushi restaurant downtown. Sitting up at the counter with all the bustle of the chefs and customers around us.
A ride home on the train with Dear Son and Oyomesan.
Finally this morning: a present of gorgeous house slippers.

Not bad for a birthday 24 hours. :-)

And now: she has to go to the dentist...again. ;-(

BBQ Police

Okaasan was on patrol to stop any bad behaviour yesterday.
Our bad behaviour!!!

At 7 pm she was telling off her 53 year old son for bring the house into disrepute and causing hatred among the neighbors.
He stood before her - wearing a black lingerie joke apron and a grin - rolling his eyes heavenwards and saying "Haiiiiiiii (Yeeeeeeessss)" helplessly.

Oh yes. BBQ day at our house. Whole bundle of fun.

At 11 am Okaasan left abruptly. Luckily this time we hadn't got a lunch delivery coming, but I was cooking up a delicious salmon and potato soup (a BBQ guest had sent us a whole salmon in advance).
Lunch? Salmon soup? No, don't want that. I'm going out, Amanda hasn't invited me, she doesn't want me here. I am going out. 

You get the picture. Dear Son tried to coax her back into the house. They stood in the street talking. I hid in the garden.

But no. Okaasan had decided to leave.

So, we enjoyed our BBQ with luckily a much smaller group of friends this time. Only 10 people. More relaxing for us, I actually had time to chat to people instead of running around with plates and drink requests.

.....

At 4.15 pm we saw Okaasan coming home.
Being BROUGHT home hand in hand by a middle aged woman!

It was the woman who owns the Korean restaurant by the subway station. Bringing Okaasan home. And checking on the bad family who had forced this poor old lady out into the streets on a hot day to eat alone, while they ate and drank with their friends at a BBQ party that didn't include the aforementioned poor old lady.....

Pretty sure THAT was the impression the woman had, from what Okaasan had been telling her!

Apparently Okaasan had gone there for lunch - at 11.30? and stayed and stayed and stayed...chatting and chatting...I can't go home yet, there are people there, can I stay longer, chatting and chatting....over 4 hours!!!
Finally the woman (who maybe wanted to close up the restaurant and have a rest before the evening work ), offered to bring Okaasan home. Only 10 mins walk. But still. Even in amazingly over-kind Japan, this is service beyond service to a customer.

Dear Son (wearing the black lingerie sexy apron) apologised a lot.
I took Okaasan inside and get her settled down with the TV and a drink and some chat.
We shook our heads in disbelief.

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

At 6.30 pm I was making my rounds in the garden saying "bye, I have to go cook dinner now" to friends.
Okaasan appears on the doorstep and starts telling Mother of Cutest Baby in the World and another guest: I have to be strong and tell Yujiro that this is too late for guests (YOU!) to be here, it is getting dark and this noise is disturbing the neighbors, and my husband always had people to the house and I had to be patient, but eventually I had to tell him - I have to tell Dear Son too. It is TOO LATE! You should all go HOME!


Aghhhh!!!
6.30 pm. Saturday. Summer holidays. BBQ-crazed Hokkaido.
8 people!
Agggggggggghhh.

I aplogised to the guests, got Okaasan inside with lots of reassurances that now it was her dinner time, and everyone was leaving soon, etc etc The neighbors are ok. It isn't that late. Nobody is worried about 6.30 pm on a saturday evening in summer.
This isn't the Fuji Rock Festival. It's 8 people standing at the side of the house in the garden.
etc etc etc

Okaasan went on and on about it. Get stroppy with me in the kitchen.
I got stroppy too. Broke all of those dementia care rules.....
"You've said this 20 times now in 30 minutes, enough already, it IS ok. In Hokkaido this is ok. Maybe 50 years ago in Saitama this was rude to the neighbors. Here in 2013 in Hokkaido, it is only 6.45 pm in school summer holidays on a Saturday. It IS OK! The guests are going soon, don't worry".

Okaasan very stony face at me.
Yujiro came into the kitchen with dirty plates - wearing the apron with lingerie design - and got a dressing down by his mother...

I heated up the soup, made other food, rice and salad and sat her down. Sat down with her to pretend eat stuff opposite her. Chatted on and on sweetly about all sorts of positive stuff - the salmon present - the cute design on a candy box - the flowers - the salmon - the weather - on and on...finally Okaasan was less tense and actually talked normally.

Finally.
I sat with her a bit and then left her with the TV and a cup of tea. Pulled her curtains closed so she couldn't see the furtive BBQ guests huddled in the twilight round the BBQ coals...

agggggggggggggggggghhhhhhhhhhhhhhhhhhhhhhhhhh.

And that was our day.

* We have to go today and take a thankyou gift to the Korean restaurant woman. Apologise and convince her we aren't bad people to this old lady. That it is HER choice to out and stay out, etc.

And I feel sad that my name is being used by Okaasan as the bad person who isn't inviting her to the BBQ. She is putting the bad feeling on me, not Dear Son.

And really - telling our guests that it is time they went home - that was a bit of a shock. Telling us is one thing, but going out and telling guests off, even in a nice way, for still being at a party at 6.30 pm. I'm amazed she did that. Of course our friends know what's up here, and don't mind...but imagine if it was someone we didn't know so well.

I guess the whole focus is on self and self feeling. Appropriate behaviour goes out the window.

;-) Tomorrow is Okaasan's birthday. We are taking her out for sushi tonight, and I have made an appointment for her to have 40 mins of foot care/massage at a place nearby. We'll tell her it is a birthday gift, but I've asked the staff to check Okaasan's feet and see if there are any problems.

aghh.....work starts tomorrow. That will be nice a restful.

If I don't catch up now......

...this blog will die a blog death of input starvation.

Too much ongoing life and summer sweaty heat to get near the computer and think coherently.
So, forgive random topics.
Although that is probably a good reflection of my life with Okaasan - random stuff.

** She's been trying to take stuff to the day service center. Food and laundry! The day service driver found bean stuffed rice cakes - whole and half eaten, wrapped in newspaper in Okaasan's bag the other day - and a small box of chocolates....and I heard a whole "Oh, Kazuko, you can't take outside food to the center" thing....three times, as the driver uncovered more contraband stashed away among clean knickers and magazines.
And laundry. I found 4 small towels in a plastic bag in the day center bag....when I asked why 4.... Okaasan told me she was going to wash them at bathtime...and I couldn't reason her with her that day center wasn't a place to take your laundry...her answer (and there is ALWAYS an answer) was that nobody was looking...so it was ok.
God help us if she starts taking dirty underpants to wash there. They'll probably ban her. :-(

I guess the problem is that now Okaasan is going to day service twice a week she isn't taking a bath at home, so she isn't doing laundry-at-bathtime here. Maybe once every 10 days she will wash two pairs of underpants...and leave them on the carpet, or on the bathroom floor.
The days of her doing lots of personal laundry and spending focused time outside hanging it just so - those days are gone.
She should probably have a bath at home once a week.....

**  Teeth. I've asked the dentist to write a "You must brush your teeth, otherwise infection could spread to your body" type letter, to help us start a teeth brushing regime with Okaasan.

**   Found an old lunchbox with rotting food in it, wrapped in newspaper and carefully fitted into a shopping bag to help it keep its shape. Okaasan is  constantly folding and wrapping newspaper to make bag stuffings....I almost missed that bit of trash. Have to hunt deeper in future.

**  Old paranoia, directed at me has surfaced again.
Yujiro told his mum that we are having a few friends for a BBQ tomorrow and that there would be delicious salmon for lunch, that she shouldn't go rushing away etc. And she told him that she doesn't eat with us on BBQ days because "Amanda doesn't want me there and doesn't invite me..."

Aghh.... of course on BBQ days I am the person fussing around in the kitchen trying to serve Okaasan lunch and dinner, while Yujiro is out in the garden stoking the fire and doing manstuff....so she somehow attaches ME to the fact that she feels excluded etc etc
We really don't think she wants to be in the blazing sunshine with a bunch of drunk ski teachers and random English-speakers...which of course is why we feed her separately in the calm of the kitchen.

Hearing what she said about me makes me feel sad. Crumpled inside a la Amelie.

Of course Dear Son defended me and told her that this thinking isn't true, that I do so much to make her life better etc....but...her negative feeling is there. And I'm in the vortex.
She doesn't know stuff like: I went to the event ticket office downtown this week and looked for a Saturday afternoon music event to buy her a ticket. Thought she would feel happier if she could escape us and the hated BBQ and go to a nice music concert. But couldn't find a suitable event. Bought Okaasan and me tickets for a big band concert in November, instead.
She doesn't know....

I dread BBQ day really. We are having a BBQ cos a friend who couldn't come 3 weeks ago is now available. So just 10 people this time. I dread the running around being BBQ co-host AND responsible Oyomesan.

Should I invite Okaasan to come and sit in the garden with the drunk ski teachers?

** I think Okaasan may need some old person footcare. She seems to have a big bunion or something growing. And recently the "I won't wear socks to day care" is getting more determined. It may be foot pain?

** It's her birthday next week. We will go and do the sushi thing. I bought replacement house slippers for her, not quite the same as before, but same enough. I hope.

What else?

** oh...I had a week of no leg spasms, thought the acupuncture and bananas were doing the trick. Had TWO massive spasms last night at work. Agony. I was on the carpet unable to stand, moaning in pain.

Probably why I am not sleeping now. Writing a blog at 1.30 am. Too nervous to sleep in case the spasms come again. Will try acupuncture tomorrow...just another thing to factor into BBQ day.

Roll on Saturday. Gonna be a looooooong day.