Do dementia sufferers know their condition?
It's been written about a lot and experts seem to think that - yes - on some basic level people do know what is happening to their mind, and they take endless steps to hide the troubles from themselves and others...to present an OK face to the world.
I've been thinking about this recently cos I found Okaasan's interview with the doctor at her general health check recently.
I was hunting for the COSTCO card in the car and found the envelope of test results and interview where Yujiro had left it in the glove compartment...
As I have no morals at all, I got a kind student to help me translate it so I can peer into Okaasan's self-presentation to the world. Apparently Yujiro was in the room with her during this interview..."she lied!" he noted wearily. Of course he could hardly contradict his mum in front of her!
Okaasan scored very well for her age on the physical things and general life circumstances questions:
Do you go out on your own every day? (Yes)
Do you take public transport unaided? (Yes)
Do you exercise daily? (Yes)
Do you talk to people beyond immediate family? (Yes)
That kind of stuff...
She admitted to:
Do you do your own banking and financial affairs? (No)
Do you visit the homes of friends or family? (No)
But then a few little porky pies:
Do you do daily grocery shopping? (Yes!)...errr...well squid, and icecream, random veg., fish paste sausages....
Have you fallen over in the past year? (No!)
Do you have problems remebering the current date/time/month? (No!)
and my absolute favorite....
Do people around you sometimes say:"You've told me this story before?" (No!)
The last question is a Beaut!
How would a person with memory problems REMEMBER people saying this?
And who would say this to a person with dementia? No stranger would say it. No aquaintance would say it. Only very close friends and family maybe. And if they already realize you have dementia ...they are unlikely to be pointing out your failings.
It's a real chicken and egg situation.
Of course this is a very general, quick health and living cicumstances check-up and I expect the doctor knows there is a certain amount of Economy with the Truth.
But even so. It isn't very representative of Okaasan's current condition for the local health service records. She scored a very respectable 3/20 on the Daily Life questions and 1/5 on the Emotional Wellbeing questions.
I reckon 6-7/20 on the Daily Life would be a truer reflection of Okaasan in 2010.
I did think about suggestioning to Yujiro that he drop the doctor a note for the file - pointing out that Okaasan's answers about herself were a bit off the mark. But I've decided to leave it this year.
She would never submit to any medical care for dementia (or anything else!) and at the moment she is bumbling along in life ok. Another year or two it may be different. At least she HAD the check-up and is on the files now locally as an elderly woman living with her son and being cared for at home.
But it's interesting.
Okaasan of course knows that she is physically very healthy. She credits this to two meals and day, no food before 11 am, regular exercise etc as recommended by Katsuzo Nishi, a Japanese healthy living guru in the 1940s and 50s.
I reckon she does know that her memory is not good....so she writes endless little notes to herself in her room, and she constantly checks her bag and often asks us the name of things.
But of course, she isn't going to tell a strange doctor with a waiting room of people anything about this. She has no close friends. Yujiro is her one and only confidante.
We noticed recently that:
a) she really has very little awareness of weather, even if she's been out in it. Sapporo the past few days had had torrential rainfall and if we mention this she looks puzzled and says: "Was it? Not where I was. I must have been inside!" when the soaked umbrella in the hallway tells another story.
b) she often buys foods that are on her mind, but she doesn't know why, either i) something we served for dinner the night before; ii) food mentioned in a conversation or iii) food she's seen on a TV program. And there are definate Foods of the Moment. The past few weeks there has been a lot of squid, fish paste sausages, green beans, ice cream...
c) the Going Out Routines - at the moment late afternoon/early evening it's a walk to Seiyu and then coffee and McNuggets in McDonald's.
My mother has just been diagnosed with Alzheimers disease. I was home recently to visit my folks-hadn't been for four years. Mum had deteriorated significantly since the last time I saw her. She now talks to the garden dwarfs and the "man" who lives in the potting shed...however, because I live so far away-my aunt takes care of my parents. I feel for you. It must be very difficult. My husband is also Chonan (spelling?) and some day mum-inlaw will be my responsibility....Your blog is very interesting to me. We are moving to Japan for keeps by this time next year. I am trying to learn as much as I can before the move...
ReplyDeleteHi there,
ReplyDeleteI'm sorry to hear about your Mum...I can't imagine what it is like to see this take over someone you know and love...Okaasan is actually a stranger to me because before she came to live here I'd only met her 2 or 3 times on polite weekend visits to her home in Saitama.
I've had friends say that in the end with your own parent it's sometimes almost better NOT to see them because they are really only able to connect with people who are familiar/regular visitors....and occasional visitors - whatever the relationship - just doesn't ring any bells and that it's sometimes better to try and keep the memory of the person before the condition.
But in the end there ARE no rules for any of this and you have to go with what feels best...