Back

Manuela

 

Manuela Sykes stood for Parliament, first as a Liberal and then as Labour candidate, narrowly losing to the Conservative candidate. She edited and published a union newspaper for over forty years from a tiny upstairs room overflowing with books and papers.

In one day, she phoned me eighteen times and visited twice. She explained that she had “given her mother a terribly hard time” when she developed dementia. Her hope was that people learn from this transcription what it is like to have dementia. She saw the work we did together as a continuation of her work as a political activist. 

 

My first memory? I remember looking across a great expanse of gleaming water… in the sun… with my mother… and that I think turned out to be Mexico… I must have been less than three years old. My mother… my mother was… beautiful… the most intelligent, witty and caring human being I have ever met… she was always helping other people… and all during the war… Such an extraordinary person with extraordinarily principles… a huge sense of humour… and rather risqué at the time… We had much fun… Her mother was an aristocrat… She came from a long titled line… She was half Dutch and half German, with a splash of Spanish… a dash of French, but… I was born in Mexico… My parents met in America… and… fell in love and got married… and travelled on to Mexico, which is where I arrived… I came back when I was two or three or something… I’ve been back [to Mexico] several times… A beautiful place… Guadalajara by Lake Chapala…

Mummy tried to get into films in America… She had a wonderful singing voice… I sang in choirs but I’ve not inherited her gifts.

My father was a Yorkshire man… and… he was very different from my mother… He had a very compatible sense of humour but a different kind of character from my mother… a great deal of male dominance… He didn’t get away with it… They evidently must have had a great deal in common at some point…

I had a brother… He died… but he got married and had children and so on… and… just two of us… I was five years older and I think rather protective of him… but then when he went to school he came home one day and said, “Boys are better than girls. They told me that at school.” For quite a while his attitude changed and he tried to dominate… because that was the culture… and… I didn’t exactly throw him down the stairs but… well, we disagreed. Mummy of course backed me up… and… I think probably he had rather a rough time because there were two dominant females and he was the younger male… My father had left the house… The whole culture… which I noticed my brother picking up and coming home with… That was how I began to realise what was really going on in the world outside and how it had to be changed, but of course he was quite pleased with himself… That was how the inequality came home to me… I realised that the whole of society was fundamentally wrong and it begins almost at birth. I studied the history as well as the illogicality of it… and… men… little boys are so badly brought up… All the bloody churches… the churches of all the various denominations and religions reflect phallocracy… and… do the opposite of what Jesus said… “Mary has chosen the better part and it shall not be taken away from her”… and ever since that day men have been taking it away from her… All bloody men produce is a squirt and that would be better bottled… analyzed… the best part removed and the rest thrown away… I wrote about this in the newspaper… I got the most enormous mailbag… Women have been degraded… abused… victimised… and enslaved… by men in every conceivable way… The only reason you might think things have changed would be because of the group you mix with… But Britain is better than most… If you go to a church down the road… go to a marriage, who takes whose name? No matter what and where they teach, teachers should be instructed in… the essentials of expressing themselves… with absolute equality… sexual equality… We make a point I think… or we used to… I haven’t examined it recently… of emphasising the necessity of racial equality… Does this remain so? Well why the hell don’t they do it with sexual equality, because they don’t, do they?

I was in the Fleet Air Arm… but… I was a Wren. Do you know they have ships with aircraft? Well I was on one of those… a direction officer… I flew them off and on… I carried on being a direction officer in many ways later on…

I remember all these people… These memories are rock solid… This dementia… it’s just the recent things that I can’t hold on to… It’s a nuisance… I can’t hold onto the threads…

I’ve lived in this house for more than forty years, I think…

I was on the council… We were talking about this? I mean this is a long time ago… I can’t remember the details of the conversation but… but… obviously it was a financial meeting… and… and… we were talking about money being spent on the local authority and various things that should be done… and so on… and rates came up and… and I asked how much we got out of Buckingham Palace since… Buckingham Palace is in Westminster… how much did we get from the rates of Buckingham Palace… and… and… because I thought it would be quite a large amount… and how is it being used… and… and that was when I got this sort of snigger around the table… and one of the people said, “Councillor, palaces don’t pay rates!” That’s exactly the phrase… Nobody was surprised except me… and I said, “What!” and they said again, “Palaces don’t pay rates,” and then everybody chipped in, “Palaces don’t pay rates.”  Well, I asked, “Why the hell not?” It’s national… no palaces paid rates¼ “Why should Westminster residents pay?” And so that grew and they couldn’t answer that, could they? There was the customary snigger but that’s no answer… Well, I said that I would go and challenge the Government about this because it is irrational and unacceptable… So I did… I went to the Members of Parliament and I said, “Did you know?” and they said they did not know… I thought, “Well, here you are in charge of our government and you can’t say any longer that you don’t know because now I’ve bloody well told you… Go and check it…” “Yes, yes, yes, we will.” To cut an interesting story short, they did find out… that I was right… They were fairly appalled… because as I pointed out this was a national issue and not just Westminster… so I said I was going to have great fun in Westminster and places where there were similar palaces… with the local population who evidently didn’t know either, but they very soon would, because I said I would print it in the newspaper, and I did… One of the gorgeous things about the newspaper was that you could say the unsayable… I said that I thought the palace should be doing its job properly… and become part of the democratic system… but we haven’t got real democracy anywhere.

The reaction from the councillors to the newspaper was mixed… Some of the Labour people were rather pleased… The Tories, of course, hated it… I used to be a Liberal, did I tell you? For a very long time, I didn’t like the way the Labour Party behaved… They were very often as Tory as the Tories… and I printed what Tory means… “To plunder for the sake of gain”…

When I wrote about vegetarianism… and more specifically the treatment of animals, my mother wept… She really wept… She studied dietetics and she thought I’d die… Shows what dietetics were like in those days… I can’t remember how this all started, but if you read through the newspaper in the British Library you’ll find out… I was infuriated… I asked questions about meat and… how they were killed and so on… because my family were hunters… going out shooting and bagging trophies… Somebody said to me that you should go to an abattoir and find out… and I thought, well that’s a useful bit of advice… I’ll do it… and… I went… and I couldn’t believe what I saw… and the way they were treated before they were killed… I’ve written about it bluntly… and I haven’t hidden what I saw… I put some pictures in… and I got the most enormous mail bag… very mixed… but quite a few said that after what they’d read they weren’t going to eat meat any more… Whenever I think about [those animals]… I’m back… I can never erase that memory, however bad my dementia gets… I remember the whole experience in detail… I went on platforms and soapboxes everywhere… Whether I was talking about blue moons or what, I’d always find a way of bringing it round to this issue… and my mother wept for me… but… but… the glory of writing is that you can say what you mean and you can… if you have the courage… make a difference… and say the unsayable… But now I’ve seen people treated just as badly… people in care… people with dementia… drugged and sedated with a cup of tea and a digestive biscuit… It shows contempt for the elderly… It’s been like that for gener-bloody-rations…

It has been getting worse for the past couple of decades… To make a change in care we need to make a change in the politics of care… (a) It’s ignorant and (b) it’s… indefensible… cheaper and easier.

Dementia… I was told mummy had it… I was told I would get it… I was told. I was told that it hits more women than men… and older people… and mostly women… they’re marginalised… and stigmatised… and hidden. I’m very distressed at the way the subject is avoided.

It is rare for a carer to have real integrity, and I should say this applies to the people that run the so-called care homes… They take advantage in so many ways, including theft...  If you examine the character of quite a lot of people involved in… quote ‘care’… you do a bit of research and… you’ll find a lot of people involved in care are… are… bossy boots… I did an article on that… Go and read it in the British Library… Forty years of it… I raised quite a mail bag… most of it unprintable… They really were very angry… I’m blunt… I don’t believe in wasting words… I had the experience of nursing Mummy… I’ve seen what happened in the hospitals…

My mother developed dementia… It seems to run down the family line… I looked after her mostly and… I found it very difficult… because… you’re expected to care for people but you’re never, ever given… I don’t know about now… but I was never given a real understanding of what she was going through and why… or… given advice on how best to look after her… You have to be able to understand in order to be able to look after properly.

Mummy thought I was potty because I read about vitamins and minerals and other things and I think they’ve kept me going… I think I got my diagnosis about twenty years ago… an erosion of the brain… that was the phrase I used… On the brain scan… it looked like a golden cap across the side of my head… and… I said, “That’s pretty, what’s that?”  He said something like, “Sit down and I’ll tell you… That’s your dementia.”… I left the hospital, came back here and carried on as normal… as best I could… doing mountains of other things. I never got paid to do the newspaper… It was bloody hard work… Nobody wanted to take it over… and it made a loss but I thought it was so worthwhile that why would I stop?  I produced that newspaper single-handed every month for forty years. Why would I stop? Things pile up... I’m afraid I don’t have time to tidy away everything every day… I’ve lived for decades like that, so things… as you can see, have piled up.

Dementia care in this country doesn’t exist... The problem is that… a great many people who are supposed to be carers… have contempt… for the loss of memory… and… the mental problems that that leads to… and take advantage of it. They behave in the most diabolical way and think they can get away with it… because… no one would believe the poor woman with dementia.

I’ve been going to worship at the same church for half a century… I helped to found the social care unit. I have huge arguments now whenever I do go… I loathe… I spit upon… despise… what they have done… I’ve told them that they are now doing precisely what the temple did… Jesus criticised the temple and what did they do to Jesus? They murdered him… I said just yesterday, “Here you are repeating the whole bloody thing”… They have taken the cross out of the window… You ask them where it is now… “We took it away and we gave panes of glass… parts of the window… to different people and… and…” and now it’s not a church it’s a concert hall… If you want a church, you have to go down past the bookshop and the restaurant and along the corridor… past the books and finally right at the very, very, very end there is a little room where you might just have a service occasionally… The priest occasionally gives me a tolerant smile… They know me very well… I’ve been there longer than they have… I seem to remember writing an article on this.