Sunday, 1 December 2013

Dementia views

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? 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'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???



  1. I wish you all the best with the proficiency test!! I should do that at some point too Lord knows, but the study.... >.<
    And I think you and DS are amazing for looking after his mother like you do. My MIL lives in her own house with her daughter, and is still young and very genki. But when I think of doing something like you
    Before I first came here, her son (my husband) suggested that maybe we should all live together for a while. And both she and I vehemently disagreed, for which I'm eternally grateful.
    So the end result of this is I think you're doing a lovely thing that maybe not enough people appreciate. But after working in rest homes with dementia patients, I can appreciate what you're doing. So really, you guys are pretty damn awesome. Don't forget it!!

  2. Dear A-san, thank you so much, we had a great time and it was lovely to meet you face to face. You are right, no chance to talk properly and I guess I even didn't manage to tell you how much I enjoy your writing. What a coincidence that we both took the test (well, maybe not so much given it is only 2x a year). Mine Attempt was a massacre :) もっとべんきょうしなきゃ。。。Happy Birthday to Y-san!!!

  3. Longtime lurker here... you and Dear Son deserve big congratulations for all yo have done for Okaasan. As you say, your care and the calm, quiet and healthy atmosphere you provide are essential to her good health and longevity. Big kudos to you both! And separate kudos to you for this blog; I enjoy it not only as a past resident of Japan but also for the education it provides. - Karen from Washington, DC