Everyday is...

Everyday is....this.

I'm promoting the films "Everyday is Alzheimer's" currently and it's made me think about the everyday....everyday....

I took this photograph in the evening. But it could have been 9 am. Or lunchtime. Or mid-afternoon.

Because every day, every hour for Okaasan is the same. She sits or stretches out between the sofa and the heated table, with a blanket over her - and clothes and papers and bags all around.

Sometimes I clean. Take up a layer of paper and clothing. Remove the rotting food and important letters. Leave the rest.

This IS Okaasan's world.

And I expect this scene is repeated in the homes of many dementia sufferers.

Okaasan is experiencing this moment. "Later" she will tidy up, or put that away. Always "later". Meanwhile, the familiar things are all in sight and can be reached easily. She can pick up the same things and look at them for a few moments. Watch a bit of Tv. Then pick up the same things again. Sleep. Wake up. Tv. Look. Sleep.

Apart from going to the toilet and coming to the kitchen for food - when Okaasan is at home she is here. She has two rooms. But hardly stirs from here.

It looks awful to us: we feel the need to clean and tidy. Make it 'nice again'. Is she leaving it like this because she lacks the energy - mental and physical - to do anything about it? Where to start? Depressed about doing it?

If I offer to help...she gets very stressed, picks things up and puts them down in quick succession, nervous that something important will be thrown away.

 But I stress about it myself less now. It's Okaasan's familiar nest and I don't disturb her. Just let her be.

Recently an 80 year old student went to visit an old friend who she knew from the mountain climbing club. My student is still an active member of the club. And the church choir. And her residential community. And. And .And. Everyday rushing around doing things.

Her dementia-free life is so different from Okaasan.

My student's friend is 90 plus and living in a care home in the hills near the city. Still recognizing family members and visitors, but needing help for feeding and toilet etc. Repeat stories, locked away in the 1920s Japan of her youth.

My student was sad after the visit: "From the care home you can see the lights of the city, but it is far away. There is nothing around there. She must be so lonely and sad. I NEVER want to live in such a place. Her family say she is 'happy'...but..."

I wonder. I suspect her friend is happy in her own way. 

Now her world is her room, the care home dining room, bathroom, living room. The blanket. The TV. The smiles from staff. The flower in the windowsill. The magazine.

A much smaller world. But giving her reassurance and pleasure in every day.

She has no concept of "I haven't been out to the shops for weeks", no concept of being away from the city. I am guessing.

Here and now. This moment.

Everyday is Alzheimer's.

So that was Christmas...

...and another year almost gone.

I made it to the end of working. Well, classroom working. I still have a massive editing job to do over the holidays which I think I can do with cups of tea and regular supplies of Xmas chocolate..

Christmas came and went, without Okaasan noticing much.
It isn't a big thing for her generation of Japanese, so I didn't feel too guilty to be going out for fun with friends and students.
I decorated the bits of the house she sees - toilet and kitchen, entrance hall. And on Christmas Eve and Day I made her mealtime sitting place at the kitchen table look festive.

Dear Son got back late on Christmas night from work, so after a lot of eating and drinking with friends I cooked him a cheese and potato omelete and shared some TV time with him. He is home for 4 nights in a row, which is in itself a present to us as a couple at this time of year. Ski school schedule change brought him to a ski area nearer home. He'll be here till Tuesday, and then gone again.

Okaasan ok.

Went out with day care helper Christmas Eve and didn't buy up a ton of food. Only a huge cabbage.

She had another toilet accident that evening. I was making Christmas cup cakes for a class, humming carols etc Noticed that she'd been in the toilet ages....she came out looking a bit sheepish...I made gentle helpful noises: "upset stomach?" and she mentioned not quite getting to the toilet in time, but claimed to have cleaned it up.

She hadn't.

But I couldn't break my fruity Chrissmassy cup cake joy with carols to face that on Christmas Eve. I just bundled up the soiled mat (had only been newly cleaned and in place 5 hours!) and carpet tile - and put them in the bathroom to cope with the next day on my way to work.

Oh. And the chair standing and top cupboard exploring.

She's at it again today...

Got a bit testy with me when I said it was dangerous and that the only things up there were unwanted stuff. Told me: Japanese people don't fall off chairs (!!!!!) and that you should always sort through things in case you might need them now.

Aghhh....

I got her into a bath and then did a frantic 20 minutes clear out of the top closet. Put the bags into trash bags for protection and put six bags (each containing about 8 smaller bags!) into the shed in the garden. Left about 3 bags on the floor in her room for her to sort through. Took the closet doors out of their runners and hid them.

Now she can SEE there are no more things up there to reach for. She can sort through the stuff within reach. And hopefully be content enough. Because I really can't start hiding the kitchen chairs every time I go out :-)

I'm sure this sudden interest in the closet is a sudden burst of end of year cleaning thoughts. But she can't be standing on a chair like this as her age. Her balance on a flat shopping mall floor isn't great. A chair is an Everest.

But the dementia makes her aggressive to any suggestion of help: even when I showed her after the bath how I'd helped her - look I took the things down for you. Now you can sort them out safely. She was still testy with me. No gratitude for the help.

I got her all smiley and chatty at lunch: wartime food, New York, etc. The old tales. Maybe just averted a flareup.

Maybe.

I'm going to get DS to warn her about chair climbing though, she does listen to him and if he says something is dangerous she may take his advice. May.

I have to get rid of all these bags. Shall have to find someone who does flea markets in the spring and offload them all.

And so. Another New Year holidays of Okaasan and Me approaches.

Dear Son will be away. It'll be me and Okaasan for the festivities. I bought some frozen crab legs and readymade traditional food. I'll take her shopping tomorrow and try to control the amount she buys.

:-)

Naaah

Did I ask Okaasan how to cook burdock and carrots?
Naaaahhhhh.
I came home on Monday at 6 pm after 4 hours of classroom time and NINETY minutes of the dentist chair (ongoing and almost finished root canal treatment) and poured myself a large glass of Chardonnay. Flopped on the sofa with a cat draped over my knees.
Dragged myself upright enough to put the burdock and carrot in a miso soup creation, and heat up supermarket fried fish for dinner. Gave Okaasan 30 minutes of chat time at dinner.
And retreated back to a 2nd large glass of wine and more TV.

Didn't have the warm, relationship building joint cooking thing at all.
I have a dream, that if I wasn't working full time I would be spending lots of quality time with Okaasan chatting to and doing things with her to build our connections and give her fun in life.
But - too many days are like this Monday. Work comes first, and Okaasan care is limited to getting some kind of food on the table by 7 pm every day.
In between work we fit in the bathtimes/the walk times/the laundry/the cleaning/the lunches left on the table or ordered in for her.
Two people working don't have much extra time to give to quality caring.

We do what we can fit in, without feeling too guilty.

Meanwhile - DS is back from Tokyo and getting ready for his ski season.
I've turned up the nagging level so that he has been forced to call the day care manager and arrange a home visit for next week to discuss what they can do to help Okaasan this winter.
We are hoping for a friendly woman to come every Wednesday afternoon and take Okaasan out to a local big supermarket, let her walk and shop for snacks and magazines, bring her home and maybe cook some dinner for her. If that happens mid week thru December to March, then I can take her out at weekends.
If she gets out of the house and walks at least twice a week - it is a good enough basis for life.
Plus - if I can get that Nishi Guru exercise video set up....

Have to give up on going to day care for now. She is too negative about it. And DS isn't eager enough to push her.

We did a big clean of her room today. Got the carpet back from the dry cleaners and threw away a lot of papers and stuff in her room. 
Found more #$*?<" in a supermarket flyer...left on the heater in the kitchen :-( I'd noticed the paper there for a few days...hadn't realised what was inside the fold....

yuk.

We really HAVE to check and clean her room and areas more now.....

Dear Son has realised that his mum's walking isn't steady at all. He doesn't want her going on her own to much. In fact she hasn't been out on her own for a walk for a week or two, and she has been downtown on the subway for maybe a month or more.
With winter coming her life is about to get much smaller...

and my life is about to get....BUSY!
This blog, which has been comatose during summer will probably liven up.
Probably.