The Tao of Dementia

Weekends are difficult to separate the home from the task. Perhaps the notion of separation is a reaction to the situation. It seems to be a symptom of caring that one becomes isolated, the distinction between work and home becomes blurred because caring is work, and so it can get to the point where you think you are always working, even when you are just at home.

It draws one to the conclusion that a degree of separation is necessary. It is sometimes not all that fun living and working in the same place, especially when the hours become so mixed up.

In fact not just the hours get mixed up, it is the whole dynamic.

You grow to understand the nature of the dementia slowly. You know what to say and how to react, when to do what, and how to steer around the pitfalls you've made before. Yet you know this person. You knew her before some connections in her brain got fried by a cold night spent on the floor at the foot of the stairs. You have to reconcile the past with the present on a human level, respect the relationship you had before. Dementia isn't that the brain doesn't work, the synapses still bang away sending their signals, it's just that the memory access is a bit suspect. I'm still a grandson, Granny is still a grandmother. She still thinks that she is perfectly ok, and in some ways she is. That's where I have to help her to be. It's hard at weekends though, where one ends and the other begins.

If you overesteem great men,
people become powerless.
If you overvalue possessions,
people begin to steal.
The Master leads
by emptying people's minds
and filling their cores,
by weakening their ambition
and toughening their resolve.
He helps people lose everything they know,
everything they desire,
and creates confusion
in those who think that they know.

Practice not-doing,
and everything will fall into place.

So runs chapter 3.

(I should note that this translation comes from S. Mitchell and is posted at http://www.wuwei.org/Taoism/taoteching.html)
and there are lots of other translations out there too, the Tao Te Ching was written, it is said, by Lao-tzu who having decided to leave the service of the Emperor was stopped by a palace guard who had him sit and impart his knowledge/wisdom to paper before he was allowed to leave, which he then did. It could be true, who knows, the past tends to be generally a matter of opinion.

Posted by Patrick at 9:15 PM | Permalink | Comments

I love my brother. He's a bastard, but he's still my brother. He told me the other day that he's the master of reading other people's moods. Perhaps he is. I reckon it's one thing to read them, another thing to affect them.

When people see some things as beautiful, other things become ugly.
When people see some things as good, other things become bad.
Being and non-being create each other.
Difficult and easy support each other.
Long and short define each other.
High and low depend on each other.
Before and after follow each other.

Therefore the Master acts without doing anything

and teaches without saying anything.

Things arise and she lets them come; things disappear and she lets them go.
She has but doesn't possess, acts but doesn't expect.
When her work is done, she forgets it.

That is why it lasts forever.

It can't be taught. When we meet would we ever know?

There's a song by Hal that just came through my headphones, it's called Keep Love As Your Golden Rule

Put your hang ups in the closet Put the fears you have in a box Come on baby pull up your socks And sunbeams will shine They will give you light in the dark Don’t give yourself a head start Cause the radios beating its tune All the crackles through the waves And there ain’t nobody to blame So keep trying baby be brave Don’t listen to what they say Keep going you’ve come all this way It’s evident do as you do Cause your just so beautiful Keep love as your golden rule Keep loving the way you do Cause that’s what those stars are saying And count your many blessings And sunbeams will shine They’ll give you light in the dark Lets get ourselves a head start Cause the radios beating its tune All the crackles through the waves And there ain’t nobody to blame So keep trying baby be brave Don’t listen to what they say Keep going you’ve come all this way It’s evident do as you do Cause your just so beautiful Keep love as your golden rule

Supper is ready. 'Are you hungry darling? I've still got a schoolgirl's appetite.'

Posted by Patrick at 8:15 PM | Permalink | Comments

Constant repetition is a part of living with dementia. This repetition isn't necessarily a bad thing for my Granny - she has only a limited number of stories to tell, if she was to realise that she had told them many hundreds, even thousands of times it would upset her and perhaps she wouldn't be inclined to tell them. That said if she did realise then she wouldn't have dementia and she'd be able to remember other things to talk about.

She loves to tell you a story. You can see it when one occurs to her, you can see it in her eyes and in how she sits a bit straighter and leans forward holding her hands together with a smile. She'll tell you about her parents' dog Jock, and how the local police would borrow him on a saturday night as they did their rounds of the pubs. He was an Airedale, smooth coated, and when he stood he could put his paws on her father's shoulders, and her father was six foot two. I don't tell it the same way as she does, but she will tell it to you again sometime using exactly the same words with the same intonation. She might tell you in five minutes, an hour or next week, she'll never forget it, but not that she's told it. I'm all there with my coughdrops, she'll tell you.

I am used to repeating myself too. Where we are going, what we are going to do, who we are going to see, what the occasion is, whether she paid or I paid, that I'm not out of pocket, that she has given me some money for the petrol, that I've got the key in my pocket, that we left a light on for the cat (she worries about the cat and that it might not be safe in the dark), that we locked the front door, the back door, that we left a light on for the cat, that she has given me some money for the petrol, that we locked the front door, the back door, that we left a light on for the cat. You get the drift.

The tao that can be told is not the eternal Tao
The name that can be named is not the eternal Name.
The unnamable is the eternally real.
Naming is the origin of all particular things.

Free from desire, you realise the mystery.
Caught in desire, you see only the manifestations.
Yet mystery and manifestations arise from the same source.
This source is called darkness.
Darkness within darkness.
The gateway to all understanding.

I think meditation helps.

She'll never change. She is the Tao. The desire to make her better only makes you more aware of the manifestations of how she is. The world of 10,000 particular things that just come round and round and round again.

She is very patient. She will hear you out as you explain to her whatever you want her to understand. She will understand but she will not remember. You'll explain it to her and she will understand. She is very patient, she will listen to you, but she will not remember. You'll explain it to her and wonder whether it is you or it is her, whether your mind is playing tricks on you, or if she is playing a trick on you.

Posted by Patrick at 7:53 PM | Permalink | Comments

Granny has dementia. She doesn't remember much from minute to minute, much less from day to day. But she doesn't realise this, she cannot remember that that she doesn't remember. She lives in the eternal present and the distant past, which thankfully she can remember, in parts. When she tells you a story it will be told in exactly the same way as she told you the same story five minutes previously, or yesterday, or last week, or last year, even tomorrow it will have just occurred to her to tell it, and every time for the first time.

She has a routine, which daily she remembers what to do and when. She is aware that she has had a meal or not, whether she has had a cup of tea in the afternoon or that she has had a mid-morning cup of coffee. She knows on a thursday she goes to town, she knows on a sunday we'll usually go out to the pub for lunch.

She's slightly incontinent, and it upsets her, but only when she is changing - it has never happened before and it will not happen again. She still paints, she says, but she leaves the her painting equipment on the dining room table, all laid out as though she had been using it just yesterday. She hasn't touched it for weeks, but it is there, so she feels that she is keeping busy.

Yesterday she returned from the day centre with a raffle prize of five chocolate bars. She gave one to me. When I came downstairs an hour or so later there was only one left. I asked where the others were but she thought the one there was mine and had had nothing to do with her in the first place. She had no memory of getting the chocolate, eating the chocolate or throwing the wrappers in the bin. She told me she wouldn't want much supper because she'd had a good lunch at the day centre - she always tells me she has a good lunch there, it is all she can remember of her day. If I ask her what else she's been doing there she says, 'oh, just the usual, lots of sitting about.'

I've lived with her for nearly three years now. She's 90 and I'm 34. We live in a small town in the south west of England, a nice enough place but a long way from anywhere, the kind of town people like to retire to because they are scared of the big wide world, or the kind of place people grow up and stay in because they were brought up being scared of the big wide world.

There was a headline in the local paper during the recent conflict in Lebanon...

"Invasion!"

... but the article was about Japanese Knotweed moving into some local hedgerows.

It's that kind of a place, the big wide world is the big wide world, but it doesn't exist here and when it pulls into town the locals don't like it.

I love my Granny. She's barking mad, to coin a phrase, but at the same time she's more in tune with herself than a lot of people seem to be. She knows yet she cannot remember.

If you know anything of the Tao you'll know that the Tao that can be followed is not the true Tao.

If you didn't you do now. Dementia is a state of mind. Coping with dementia is a state of mind.

And, we must remember if we can, that the name that can be named is not the eternal name.

Posted by Patrick at 10:54 AM | Permalink | Comments