Dementia views

HI!
A few hours from now I will be taking Level 4 of the Japanese Language Proficiency Test at Hokkaido University. Trying to improve my language skills so I can be a volunteer at the 2020 Tokyo Olympics.

So, I should be studying. Cramming. Trying to get my ga's, ni's, kara's in order.

But I'm here instead, cos it's more relaxing. :-)

Was my last posting a whole week ago? Where did all that time go?

What on earth happened in the past week?

Right......it was Dear Son's birthday! He became fifty five years old. Absolutely ancient. I took him out for cheese fondue and red wine. 

What else? I was still recovering from the Tokyo lurgy, so operating on half energy for much of the week. I still have a pile of stuff on the table that I took out of my handbag pre-Tokyo - haven't had the energy/interest in putting it all back in there again.

I'm getting like Okaasan.

Oh! And blog reader K-san and her family came to stay!!! Via Couch Surfing, the people to people homestay website. I think she looked on CS and suddenly realised the British woman in that host profile - is the same woman living with that old lady and cooking tofu in a million different ways. We had a sushi dinner out with her and her husband and children, but not really enough time to chat about Okaasan and Me and our lives. But still, nice to know there are real people out there reading these ramblings and enjoying them.

Okaasan good this week. She went to day care twice - although stuck again on the thought: "I go there twice a week? Really? twice a week?", but she got up when reminded and got ready and went. Apparently she saw "someone" at the front door and actually greeted them....although there was nobody there because the driver and Dear Son were chatting by the car.

Day center recently have asked us to send Okaasan along with an extra pair of black trousers, because the toilet accidents are more frequent and they need to change her into clean clothes. At first we were handing over the extra clothes surreptitiously to the pick-up driver. Now we just do it directly and if Okaasan asks we say "clothes for after your bath", and she accepts it. I went and bought another pair of black trousers, so there are 4 in rotation - worn/being cleaned/extra/lurking in her room. The night before going to Tokyo I was sewing the hem of the new pair - my duties as Oyomesan :-)

Experts talking dementia and home care.

Last week NHK Tv broadcast a special program about dementia and care in the family. A retired producer had videotaped his mother over many years at home, from the start of her dementia to the sad, last gasps in hospital as she died aged 99. 

Many of my students - middle aged and elderly people - watched it and commented on it. We recorded it and finally got to watch it last night. Dear Son and I.

Oh, the familiar scenes.

The Okaasan in the program had lived alone for many years after her husband died, independent and healthy. But a good neighbor noticed strange behavior first about money management and housekeeping, and less and less cooking.

It sounded so familiar.

Then there was a period when the family were pre-cooking trays of food and leaving How to Cook in the Microwave Oven instructions, and going in to clean and sort out a messy house.

Then there were toilet accidents. Shit everywhere. And the Okaasan very surprised about it - reminded me of my conversations here last year? with Okaasan about soiled underwear.

And then loss of mobility after a stay in hospital, and more toilet accidents, and confusion...and feeding, and dressing.....and decline.

Of course, there were funny and happy scenes as the mother and son laughed and talked. The studio experts said how important it was to have routine and normal family life.

The producer and his mum.

As the program was finishing I glanced at Dear Son and realized: he was crying.

I comforted him and reassured him we were doing great. HE is doing great. These years now are forming a bond so that when we have the hard times ahead with Okaasan care, she will trust us and we will support eachother. It's all ok.

One of my students who commented on this program is in her late 70s. Fiercely independent and able.

"All this stuff now about dementia being a sickness, you know...years ago nobody said that. It was just accepted as one of the things about getting older, so people just helped and understood and did what they could...it's how we should think..."

I agree with her. To an extent. It is just a stage of getting older, but it is also more than that. The person with dementia is kind of protected within the sickness, they don't know the limits of their life - that they haven't eaten, or brushed their teeth or hair, that outside is cold and not T-shirt weather, that they have bought 5 pots of the same yogurt, that there is rotting food under the newspaper, that there IS no man standing outside the door at night.....for the family/carers these are the things to help with and gently guide around.

The TV program reminded me what may be ahead for us. The toilet accidents, for sure. Now Okaasan regularly pisses in her multi-layer pants, and about once or twice a week there is shit on the toilet floor or in her clothes. She tries to clean herself up, she hides the soiled clothes in her room. And forgets them. I go in and find them and wash or throw them away.

I think we are nearing the time to get some kind of sleeping mat or sheet - so that we can keep her sleeping and sitting area clean.

Okaasan sleeps on the floor between the sofa and the heated table, under the heater blanket. Under her body is just carpet and wood flooring, and usually a towel.

We gave her a futon when she first came here, but she has never, ever used it. She watches TV in the evening, sitting on the floor under the table blanket. And then sleeps there too. A few times she sleeps on the sofa. Usually the floor - she is Japanese, afterall.

But the toilet accidents are increasing and a easy-to-clean mat would be a good idea...

She hasn't tried to cook (heat rice/egg/water) in  a pan for many months. She hardly washes her own clothes anymore.

But she dresses herself, usually successfully. She keeps some kind of order on her table. She (eventually) puts away piles of washed clothes and she takes part in conversations.

Next week? December 3rd maybe? It is FIVE years since Okaasan came to live with us. Five years since this blog started.

We have done so much to make Okaasan's life better. If she was still living alone in her home in Saitama I think her dementia would be much worse. Actually I think she would be incapable of reason by now. So we have extended her happy, calm life by our care.

I thought - naively - she may live only 3 or 4 years when she first came....

In the NHK program that lady lived to be 99!

Okaasan is 83 now. Plenty more years left in her.

I think I'll be blogging for a while yet....

now....what shall I do with the rest of my Sunday???

Hmm.......

No dinner...again.

I cooked dinner.
Okaasan didn't eat it again.

This time it was her sleeping which got in the way.
She was sleeping deeply from about 4.30 p.m...so when we woke her up around 7 p.m. she was all befuddled and didn't want to eat.

Should we just let her sleep? Should we wake her and try to keep her connected in on the scheule of the day?

After all she is almost 80 years old and older people sleep. But she sleeps so much.
Of course her room arrangement doesn't help: she sits on the carpet with her back against the sofa, her lower half under the heated blanket...and often just keels over sideways onto the nearest pile of newspapers/underwear/pillow when the TV gets a bit boring.

Yesterday she was awake 7.30 am to at least 9 a.m. cooking fuki in the kitchen.
I took Yujiro to work and stayed in town 2 hours to buy a digital camera (there WILL be pictures on this blog when I work out how to use it....)
I came home at 11.15 a.m. and Okaasan - surprisingly - was out. The fuki was all finished.
She came home around 1.30 pm.
At 2.30 pm I talked to her and saw that she'd bought pre-cooked fish and bits and pieces and eaten them for lunch - we chatted a bit.
By 4.30 pm she was asleep.
Still asleep at 7 pm.

So at 7.15 pm we ate dinner and Okaasan came and sat at the table with us, drinking water and giving Yujiro grief over Not Wearing Sunscreen.

By 7.45 pm she was back in front of the TV.
By 8.30 she was half sleeping again.

I guess it doesn't matter so much. She ate lunch. She chatted to us in the morning, afternoon and evening. And slept.
If she was in an old people's home the nurses might come along and wake her up...but in a busy home maybe not...

* The fuki was good. Not blow-your-mind-delicious ...but ok in a cooked celery kind of way. We made sure to praise Okaasan's cooking efforts a lot. But she didn't eat it...

Slept until morn.

Okaasan seems fine after her huge sleep and no dinner.
She had obvioulsy ferreted around the kitchen during the night and covered up some of the food plates etc.
But at 6 am when I was in the kitchen she poked her head round the door all smiley and happy.
"I was very tired, I walked a lot yesterday, I forgot to get the buttons for your coat, I was tired!.
I reassured her that the coat and buttons could wait. Anytime ok.

And she can eat last night's dinner for lunch today while we are out working.

So, all is ok. I think. She doesn't seem unduly stressed by the cancelled hula class.
She can spend the day in front of the TV, help herself to food in the kitchen and then we'll do a family dinner routine tonight.

* One wiered conversation from yesterday: Okaasan was rabbiting on about not having a small towel for her bathtime. I took her to the towel shelves in the utility area and gave her a small towel that had the logo of a hot spring resort on it.
"I can't use that, I'm not going there!" she exclaimed.
?????????????
"No, no , it's ok...please use this towel" I said.
And she took it from me and did.

So odd.
In the moment of me handing her the towel and her reading the name of the resort. Did she think we were packing up to go there? So strange.

Beginning to settle down.(J)

Sorry - I haven't blogged.
The weather has been great and as I've had a half teaching schedule I've been spending a lot of time outside - STARTING THE GARDEN! Yeah!!!


Gardening is so, so cathartic. It relaxes me more than I ever realized. Even with Okaasan coming to help/hinder...it is relaxing. (But I have learned that if I stay away from just outside the living room windows when she is home she won't come out and join me!).

Maybe it is the gardening. Or maybe it is just that finally the moving stress is beginning to recede. But I feel more relaxed and I feel that there IS some happy future in this situation for all of us. Finally. Since Okaasan came in December it's been mainly day after day of stress. Now I feel life opening up in front of me...and him.

So, a quick round up:

1. He and I started morning walking again, exploring our new neighborhood.
2. Okaasan and I spent a morning in the sunshine tackling 3 years of bamboo grass growth. People using the street and the old lady opposite stopped by to comment on our good work. Okaasan enjoyed the gardening, although I did have to watch that she kept on task and didn't stuff dead bamboo grass in the plastics trash bag. She only started that childish whining once - when I wouldn't prune a bushy thing as she wanted it. I walked away and a few minutes later talked about something else, and she appeared to have passed on and over the stressy situation. The garden looks huge! I am so happy. It's going to be a big challenge, but I come from a family of gardeners. It's gonna be fun. I don't think Okaasan actually knows much about plants and gardening...but she likes flowers.

Bobcat makes his garden debut.

3. Okaasan came home from a shopping outting at 7.30 pm. We'd started cooking dinner after deciding that we'd go ahead and eat without her. She walked in just as Yujiro was serving up 2 bowls of noodles. So, being the good son that he is ...he gave Okaasan HIS dinner, and started cooking another portion of noodles for himself. "Eh, Yujiro isn't eating anything?"she asked..."Yes, YOU are eating his...!" I remarked nastily....She really has NO concept of time. It annoys me like mad.

4. Yujiro escorted Okaasan to hula dancing as the class resumed today. We wanted to be sure she knew how to get there. She told him they were going to walk the 3 km to the sports center, so they left early. He came back later and commented that she didn't really seem so sure of the route.

Around 4 pm I had just finished "stealing" some of my plants from my old house garden (helped by my wonderful neighbors) and I decided to wait on the road near the sports center and spy on Okaasan from the safety of the car to see how she went home from Hula dancing....first she walked with classmates to half a kilometer to Nakanoshima. But then I guess the classmates went into their apartments and she cheerfully set off in the WRONG direction! She did stop and ask some women the way, but as it was starting to rain I finally broke cover and spun her a white lie about happening to see her as I was returning with a carload of plants...and scooped her up and took her home.

One night recently she came home from "shopping" and she looked so cold and tired I am sure she was walking lost for ages. It's sad, but there isn't much we can do...wants to go out, she enjoys walking. But I fear she often walks in circles.

5. I discussed with Yujiro that we should try and get Okaasan to look after herself for her mid-morning meal. He agreed. But then cooked for her twice. I kind of feel he has brought this dependency on himself by cooking almost every day for her since she came here in December. He is starting to job hunt now. When he and I are both working she'll have to fend for herself and I think we should be getting her in training!

6. We are eating all the stuff she buys. She goes out every day and comes back with stuff...apples, yogurt, rice balls, snacks...but she soon forgets when it is in in the fridge. So we eat it. Nothing has been done about the lilly bulbs yet! They are lurking in the fridge,

7. Okaasan is still falling asleep in front of the TV on the living room carpet. She wakes up a lot at night I think, but she forgets to heat her bedroom...so it isn't an attractive place to sleep. We don't know quite what to do.

8. He and I have had a few words about how much of our habits and life need to be extended to include Okaasan. He chatted to her about cheese fondue, she looked unconvinced (naturally, because she doesn't really like cheese...even though she eats pizza!). I felt sad because I have happy memories of US eating fondue. I don't want to share the experience! Then we talked about a local curry restaurant we want to try..."she'll like that, she likes curry" he said..."well, she doesn't need to come, WE can go and eat curry, she doesn't need to come with us all the time! I wailed....

9. The ghost/spirit/whatever hasn't made any more appearences. Maybe we've scared her away!

２００９年４月８日（水）　　

落ち着き始める

ごめんなさいね・・・ブログをご無沙汰しちゃって。

気候もよくなってきて、仕事量も半分だったので、長い時間外で過ごしていたの・・・庭仕事のはじまりはじまり！　イエーイ！！！

ガーデニングはそうね、すごい癒しだわ。いままでわかっていたよりもずっとワタシをくつろがせてくれるわ。お義母さんが手伝いとか邪魔をしに来てもね・・・のんびりするわ。（でも、ワタシ、学んだの。お義母さんが家にいても、ワタシが居間の窓の外から少しでも離れていれば、お義母さんは出てきて手伝ったりしないって）

ガーデニングかもしれないわ。いえ、たぶん、やっと引越しのストレスがなくなり始めているのかも。でも、もっとリラックスしているのを感じるし、この状況においてワタシたち皆の幸せなこれからがあると感じているの。やっとよ。１２月にお義母さんが来てから、明けても暮れてもほとんどストレス続きだったの。今ワタシは自分の前に人生が開けるのを感じるわ。彼の前にもね。

それでは、最近の出来事：

1. 彼とワタシは朝のウォーキングを再開し、新しいご近所を探索しているの。
2. お義母さんとワタシは朝日の中、３年かけて育った笹と格闘して過ごしたわ。この道をいつも通る人々やお向かいの老婦人が立ち止まり、ワタシたちの成し遂げた仕事にコメントしたのよ。お義母さんはガーデニングを楽しんでいたわ。お義母さんが仕事を続けて、枯れた笹をプラスティックのゴミ箱に入れないようにワタシが見なければならなかったとしてもね。ワタシがお義母さんの望みどおりに茂みを刈り込まなかったとき、お義母さんは一度子供っぽく愚痴を言い始めたの。ワタシは立ち去り、数分後、何か違うことについて話したの。それでお義母さんはストレスの状況をやり過ごし逃れたみたいだったわ。庭が大きく見えるわ。ワタシはとてもうれしいの。これは大きな挑戦になりそうだわ。でも、ワタシはガーデナー一家の出よ。たのしくなるわ。ワタシはお義母さんが植物やガーデニングに精通しているとは思わないわ・・・でもお義母さんはお花が好きなのよ。

（写真説明）ネコのボブ、ガーデンデビューを果たす

3. お義母さんが買い物のお出かけから７時３０分に帰宅したわ。ワタシたちはお義母さん抜きで食べようと決めて、夕食を作り始めていたの。ユウがちょうど二人分の麺をよそい終わったときに、お義母さんは入ってきたわ。それで、彼のようにできた息子がすることは・・・ユウはお義母さんに自分の分をあげ、そして、彼自身のためにもうひとつ作り始めたの。「あら、ユウは食べていないじゃないの？」お義母さんは聞いたわ。「ええ、お義母さんが彼の分を召しあがって・・・」ワタシは不愉快な気持ちで一言いったの。本当にお義母さんは時間の観念がないのよ。それはめちゃくちゃにワタシを困らせているのよ。

4. ユウはお義母さんをきょう再開のフラダンスに付き添って行ったわ。ワタシたちはお義母さんがそこへの行き方をわかっていると確信したかったの。お義母さんは彼にスポーツセンターまでは３キロ歩くと言ったので、二人は早めに出かけたわ。彼はあとで帰ってきて、母は道をよく覚えてはいなかったようだ、って言っていたわ。

　

　　　午後４時ごろ、ワタシは元の家の庭から自分で育てた植物をいくつかこっそり運び出し終えた（善き隣人の手助けを得て）ので、スポーツセンター近くの道路で待ちながら、お義母さんがフラダンスから家にどうやって帰るのかを見るために安全な車の中から見張ることに決めたの。最初お義母さんはお仲間と一緒に中ノ島へ０．５キロ歩いたわ。でも、それからお仲間はそれぞれのアパートに入っていったみたいで、お義母さんは上機嫌で、間違った方向に行き始めちゃったの！お義母さんは立ち止まって、何人かの女性に道を聞いたわ。でも雨が降りはじめたので、ついにワタシは隠れがから飛び出し、お義母さんの気持ちを傷つけないようなうそをついたの。植物を運んで帰る途中で偶然お義母さんを見つけたっていうね・・・それでお義母さんを拾い家につれて帰ったのよ。

最近のある夜、お義母さんは“お買い物”から帰ってきて、ずいぶん寒そうで疲れているみたいだったの。お義母さん、道に迷ってずいぶん長いこと歩いていたのね。悲しいことだけど、でもワタシたちにできることはあまりないわ・・・お義母さんは出て行きたがり、ウォーキングを楽しんでいるの。でも、お義母さんは時々同じところをぐるぐるまわっているんじゃなかって心配しているの。

5. ワタシはユウと、お義母さんが自分で午前中の食事の支度をするように仕向けるべきことについて話し合ったの。彼は賛成したわ。でも、それから２回お義母さんに作ってあげたのよ。１２月にお義母さんがここにきてからほとんど毎日作ってあげたことがこんな依存関係を彼自身にもたらしたって感じてもいるのよ。彼は今、職を探し始めているわ。彼とワタシがどちらも働くとき、お義母さんは自分でどうにかしなければならなくなるし、ワタシはお義母さんを訓練しなきゃって思うのよね。

6. ワタシたちはお義母さんが買うものすべてを食べているの。お義母さんは毎日出かけ、りんごやヨーグルト、おむすび、お菓子なんかを買って帰るの・・・でも冷蔵庫の中にあるのにすぐ忘れちゃうのよ。それでワタシたちが食べるの。ユリ根はまだだけど！冷蔵庫の中に身を潜めているわ。

7. お義母さんは居間のカーペットの上のテレビの前でぐっすり眠っているわ。お義母さんは夜に何度も眼を覚ましていると思うの。でも自分の寝室を暖めるのを忘れるのよ・・・だからそこは眠りを誘われる場所ではないの。どうしたらいいか、さっぱりわからないわ。

8. 彼とワタシは、お義母さんを加えるためにワタシたちの習慣や生活をどの程度広げる必要があるかについて少し話し合ったの。彼はお義母さんにチーズフォンデュのことを話したわ。お義母さんは納得していないみたいだったの。（もちろん、お義母さんは本当にチーズが好きじゃないのよ・・・ピザは食べてもね！）ワタシはピザを食べた二人の楽しい思い出があるから寂しさを感じるわ。その体験をわかちあいたいとは思わない！それからワタシたちは行ってみたい近所のカレー屋について話したの。“母は気に入るだろう。カレーが好きだし”彼は言ったわ。“うーん、お義母さんは行かなくてもいいのよ。二人でカレーを食べに行きましょう。お義母さんはいつも一緒に行かなくてもいい！ワタシは声を上げて泣いたの・・・

9. あの幽霊だか精霊だかわからないものがもう現れなくなったの。たぶんワタシたちが追い払ったのよ！