Sunday, 12 October 2014

Pasting on some happiness

So.
The legs are slightly better.
She is getting up off the carpet fairly easily and getting around the house ok.
Only went out twice on her own.

Outside the front door I moved the garden bench nearer the steps so she can use it for support. It used to be there, but as I was drying lavender on it recently and there was heavy rain I'd moved it back against the wall. Maybe she really does need that as physical and visual support.


And I bought a book about rheumatism. For Okaasan.


Just a start, to try and get her thinking about her condition and how to help it. I discussed with DS about the book - "she won't read it" he commented and I share that worry. She firmly believes she knows everything about health because of the health-guru Dr Nishi 40 years ago.
So she rejects any other advice or suggestion.
In my mind I have rehearsed some possibly persuasive conversations: Yes, I know Nishi-sensei was a genius, but that was 40 years ago. You were a young woman then. He didn't need to teach you about rheumatism. But of course study about health is important at any age! You can never stop learning about health can you? Maybe this book has some ideas! Have a look!

I've had that conversation with myself while sitting on the train, vacuuming, feeding cats. Replayed that scene many times.
But at the end of it Okaasan is always dismissive of the book: I don't need a book. I know about health. I studied health with Nishi-genius, I don't need a book. I know about my body. 
and on an on and on and on.
I can see me. Like Ellie in the NHK drama, standing all dewy-eyed and lip trembling. My hopes crushed.


So.
I sneaked the book into her room and onto her table. Put it under some newspapers and bits of paper. Left it for her to find.
This way she can think that maybe she bought the book. That it's her book already. Can glance at it. Get used to the  sight of it on the table. And eventually maybe open it and look at the exercises and recipe ideas inside.
If she mentions it we'll just say: "oh, you bought it didn't you..recently?" Her dementia is advanced enough that she isn't 100% sure what she bought recently.
Okaasan  deep into a program about dinosaurs...with the rheumatism book among her clutter.
 (and yes, I should clean the windows in the door!)

Sneaky. But maybe the best way to introduce the book and any good ideas it has.

* Other news.
* A local convenience store telephoned the house and said they were still holding the magazine that Okaasan bought recently. She bought it and asked the staff in the shop to keep it for her - because it was too heavy to carry. And then forgot it.
* Sorting out thru Okaasan's handbag (I periodically throw out old receipts and forgotten bits of food wrapped in tissue paper)...I came across... Okaasan's TOOTH! The one that dropped out last month. Nearly wrapped in a bit of paper and in a side pocket of the handbag.

This week has been okay. About Thursday Okaasan suddenly had a very swollen top lip. She looked like a chimpanzee. But no bruising. No idea, of course, how it happened.
She ate a little food and said it was tender to touch. But not a toothache. We don't know. She fell on the day I found her sitting on the step? She has some other problem?
Don't know. It's faded again now.

Yesterday we took her out for a Family Outing.
Lunchtime trip to a department store downtown. Car ride, walk round two floors of the store looking at clothes and shoes. Then Japanese lunch in an old fashioned restaurant.
She loved it. Trotted round the shop behind us, touching the things we touched. Commenting on the sale items in loud whispers: "That is too flashy, no ordinary woman wants THAT! Only nightclub staff, that's why they couldn't sell it!". Loving being in a shop.
She ate the largest amount of food she's eaten all week and responded to chat about fish names and shopping. A good time.

When Okaasan first came to live in Sapporo, 5 years ago, she used to go to this department store culture school for hula dance class. That's amazing in fact: she used to get dressed, on schedule go downtown and join the class and its events. Chat to the other members. Enjoy. Until the alleged "bullying".
Now she can't. The whole getting ready to go out on schedule and join a group event thing. Can't get herself on target for that.
Made me think what has changed in 5 years.

And so.
Winter cometh. DS says he'll get the day care manager to come in for a meeting with Okaasan and we'll try to get her interested in going once a week to a hula dance class and lunch. And if a wall of negativity defeats  that, we'll arrange for the local taxi to come once a week and take her out.

Thankyou for your comments:
I hear you. I really do. He IS passive about her medical care. I know. He takes the easy way out.
I am sure it is frustrating to read about this. This inaction with an elderly woman who may benefit from medical intervention.
I feel frustrated writing it.

But. A few points by way of explanation/excuse.

a) It's not my mother. I'm not even married to this guy. 14 years of co-habitation. So until he is away working in winter and she is my total responsibility - he has to be the primary carer. In any society, and definitely in Japan.
 
In winter, when he is away - if she falls down or can't get up to the toilet etc - I am going to be on the phone to an ambulance SO QUICK she won't know what's hit her. Some nice friendly paramedics will carry her out of the house and into a local hospital. And I will sit back with a glass of wine and a big satisfied smile on my face. I'm hoping that will happen this winter. I really do. :-)

b) I think there is a different attitude to crawling on the floor in Japan. The floor is not an alien place, as it is to adult Western people. Japanese people sit and sleep on the floor. Live their lives on the floor. Okaasan certainly does.
So, when her legs were so bad that she couldn't stand - and she crawled into the house from the front door steps. I think MY reaction is more shocked than her, or her son's reaction. 
If my mother or father had only been able to crawl into the house, they and I would have been shocked: "My god, it's reached this terrible level! Like a baby or an animal!"
But for a Japanese person? I think that position is just more normal. Not 100% normal, of course, but not a degrading, unbelievable level to have reached. Just a practical adaptation to a physical change. I can't stand, so I will crawl.

c) The whole No Medical Intervention is HER choice. Yes, made thru the murky prism of dementia. But still a conscious, reasoned choice. A large slab of traditional thinking. Pain is to be endured with stoicism. It will pass. Stay calm and eat a little. Sleep a lot. Let the body right itself. What will be, will be. I am old. The old body needs time to recover. 
And you know - it does.
She goes from a screaming, flinching mess on the carpet to tottering around her room peering at shopping receipts in the space of a few days. Sometimes a week. Sometimes 2 weeks.
But she does. It is amazing.
There is something to be said - and OH MY GOD THIS IS HARD TO WRITE! - to her method. Not rushing off for medical intervention at a sign that the body is under stress. But just accepting it, living quietly with the pain and waiting for it to pass.

I don't subscribe to this myself. After my stomach melon situation 4 years ago - I now happily take my problems to hospitals. It's my body and I decide.

She is 84 years old and she is deciding to do a different thing.
In spring this year - when she announced she was going to quit day care - I reached a new stage in my attitude to Okaasan. After my fury about her decision subsided, I decided:

Let her be. Just accept more of her choices about how she wants to live her life at the end of 84 years. Don't let HER choices give you stress. You don't need the stress.
If she wants to endure the pain and pee on the carpet. 
Just let her.

If she REALLY needs outside help. Or you do. Then get it. In an emergency.
But if she (and her son) want to end her days like this. It is her choice. I am a bystander to her life. A recent part of her life. I have an overwhelming desire to jump in and help and make it better. It's my nature. But she is not a person without mind yet. 
Her choice. My life and stress levels need to be my concern.

I am trying to think like that.
Trying to let it all just wash around me.
Sometimes I can. Sometimes I want to jump in and try to change the water flow.

But thankyou for all your thoughts and support! Nice to know there are real people out there reading this and along for the journey with me. I know I am not alone.

Finally. A cat picture. Cos we all need one.
A new cat tower. Thanks to Amazon Japan. The boys are unsure at the moment. But like the TV cat whisperer Jackson Gallaxy: I am tempting them with snacks into their new playland and hoping that it'll keep them entertained in the winter months ahead.







7 comments:

  1. You are definitely not alone. And yes, it is frustrating to see the daily battle you are forced to fight every day.

    However, the "It´s not my mother, we are not married, no medical intervention is their choice" all of these would truly be fine and dandy if you were not cooking for her, cleaning after her, and dealing with her "alone" during all Winter. Since you are expected and required to perform daughter-in-law obligations you earned the right to have your say about managing her condition. Once again, it´s all about fairness. It should be 50-50 fair to them, fair to you.

    I do hope she has a (minor) problem that allows you to call an ambulance while he is away. This way she will have a medical assessment and hopefully you will have some extra support. Hang in there.

    Francesca.

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  2. Hi, I agree with everything you said about letting her make her own decisions. You are following the four principals of medical ethics, where you have to chose which of the four should take presidence, and you are chosing autonomy. The only problem would be, like you said when your partner is gone for the winter, and you have to make a decision about care. Calling the ambulance could be a big mess, with the patient refusing to go, or once she is there, refusing treatment. People with dementia usually don't do well in the hospital, and you may have to stay with her. (also the possiblities of falls or infection etc.). As I took my walk today, I was thinking about maybe which your partner is still in town, you and he could go together and discuss you MIL situation (explaining about her painful episodes etc. ). I know that the doctor is maybe a psychiatrist, but he may have some suggestions for you. I was thinking also that you may need to renew her techo. Then if you took your MIL to the doctor again, since she did go and see him once, maybe he could draw some blood, so that possibly you could diagnose her problem. I think that if she had rhematoid arthitis, you would see some swelling or joint disfiguration along with the pain, so it really is kind of mysterious. I was looking today on line and found Sjogren's syndrome, which is mainily dry mouth and dry eyes, but can also give you joint pain. But anyway, if you had a diagnosis, you could maybe change her care status. so that you could have nursing care at your home and could call someone in to help move her etc. So that if you needed to provide home care for her during an episode, you could easily do it. Otherwise, it would be reallly difficult for you to do the lifting etc. by yourself, and when you consider lost work days etc. it would be really stressful for you. I think that her goal is to not use a doctor, but it is also to stay at home. If you can't provide care for her by yourself, than staying at home would not work, so if you had some kind of emergency system in place to use, it would really relieve your stress I think. I was thinking also that you could maybe make a large skate board (buy a board and some wheels at a home center, then she could roll onto the board if she was incapacitated and you could push her.) Or anything with wheels on it would help. At school, I use my office chair as a wheel chair to move kids around, since I don't have a wheel chair. I agree that most chronic illnesses can not be cured, and medication is not always helpful, but it it was more of a gout type of problem, there are good medications which can prevent episodes, so it would be worth it to find out. Also I don't think that you can qualify for more care, without a diagnosis. Sorry to go on and on. Please feel free to ignore this letter. I was just thinking about your and your partner, and trying to think of something helpful. Sincrerely, Nancy in Tokyo
    Beauchamp and Childress' four principals Basic Principles of Medical Ethics
    There are four basic principles of medical ethics. Each addresses a value that arises in interactions between providers and patients. The principles address the issue of fairness, honesty, and respect for fellow human beings.
    Autonomy: People have the right to control what happens to their bodies.
    Beneficence: All healthcare providers must strive to improve their patient’s health, to do the most good for the patient in every situation.
    Nonmaleficence: “First, do no harm” is the bedrock of medical ethics.
    Justice: The fourth principle demands that you should try to be as fair as possible when offering treatments to patients and allocating scarce medical resources.

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  3. Thankyou both!
    Long or short comments - all are welcome.
    Lots to think about.
    I do understand that once get her into a hospital she won't be happy and she may well refuse treatments etc - but she will be THERE and they will do basic things like blood work and a physical look over.
    The mental health clinic probably - almost certainly won't do.
    So , yes - I am hoping for some drama this winter - while he is a few hundred miles away - and then I can take the decision that might lead us to more information and help.
    A student's father in law went into hospital 2 years ago for an ulcer problem...and never really came out. Today I heard his body has stopped accepting the tube feeding and now (at the age of 92?) he will have an operation to put tubes and a reservoir into his body....it is no way to die :-(

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  4. Hi, I'm the Anonymous writer from the previous entry, with an elderly (81) mother of my own.

    First, I think you are doing the right thing to start distancing yourself from the situation as best you can. Painful, but necessary IMHO.

    Second, you may want to look into the legal ramifications of 'what if'. If something happnes while your BF is away, what legal rights and obligations do YOU have, as (sorry to say) merely the girlfriend? Would these change if you were actually married? I am thinking in terms of decisions regarding care for his mother, treatments, etc. I understand if you have moral or ethical objections to marriage, but being married may make it easier for you to be involved in treatment decisions, as well as in dealing with the hospitals.

    Third, the story about the old man with the permanent feeding tube scared the hell out of me. This is something you should discuss with BF and his mother before anything truly terrible happens. I had (with my siblings) the same conversation with our mother, and she agrees that she doesn't want any such measures to be done. She'd rather just go peacefully. My wife and I have also agreed to the same thing, should the worst case scenario ever happen.

    Fingers crossed!

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  5. My f.i.l has advancing Alzheimers, but my m.i.l refuses to even try respite care. Yet, she complains all day long how she can't cope looking after him. My husband wants to insist his dad goes into a care home, but his mother is an adult, so if she doesn't want to do that, then we have to respect her wishes (even if it means her complaining never ends) It's her choice and her life. Unfortunately, the rest of the family have to endure the consequences of that.

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  6. I have been racking my brains to see if there is something else you could do. Then I began wondering about the possibility of using the Nishi guy in your favour. I found a book about the Nishi System online and just read it. You can read it here - https://www.scribd.com/doc/135331659/The-Nishi-System.

    The book has a series of small exercises that would be really nice for her circulation and she should be gently pushed towards doing them. They would be helpful for her circulation during Winter. Also, the sensei has developed self-diagnostic methods which you could use to make her realize she is not in the tip top shape she thinks she is, and perhaps push her into doing something about it. You can use reverse psychology "If she is a die hard Nishi lady she should be doing them" :-)

    The health method is not as hard core as she makes one think it is. Have a look at the book in English (it is very small) and see what you think. Then, perhaps you could buy a new recent edition of the book in Japanese and give it to her saying you would like to learn more about it as well. This could be an opening to make her see you under a different light.

    I also found this website in Japanese - http://www.nishikai.net/ - but I have no idea if it is good.

    One last thing - I read that during the 40s and 50s hospitals in Japan did offer Nishi system therapy to their patients, maybe there is a list of Nishi healthcare practitioners somewhere and you could contact one of them?

    Cheers,

    Francesca

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    Replies
    1. My GOSH Francesca!!! Thankyou! I had found the Japanese website before, because he was influential injudo circles somehow too...but I didn't know there was more.Great. You are wonderful. I will take a look for sure :-))

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