John was born in a village on the south coast of England in 1930. He travelled north with his lift-engineer father in 1939 and back south in the mid fifties to take over a failing electrical shop which quickly went bankrupt. His time in National Service in the army was notable only for losing a pair of trousers. Despite his obvious education he says that he was never able to hold on to any full-time work. Most of his memories relate to a period in his teens and early twenties when he worked as a deckchair attendant. He has no surviving family and never married. John was diagnosed with a rare form of Parkinson’s disease about twenty years ago. Although he talks about sitting in a chair he is in fact in bed and immobile. John wanted to tell his story so readers would not just see him as ‘another man in bed’. We completed four short sessions before John died.
I’m having hallucinations this morning and I’m rather confused… I thought I was being woken up in my bed upstairs… and being brought down here… by that chap, my carer… he brought me down here and he said, “I’ve got your lunch, where do you want to have it, in bed or up at the table?” I remember saying, “I’d like to have it in bed.” So I had lunch in bed here. After a few minutes I realised I was still in my own room... that I hadn’t in fact moved at all… but we definitely took a journey here… we’d definitely gone downstairs… I remember the movement… so… have I moved? Have I been pushed out again? I was told that my needs were greater than could be dealt with downstairs… my medical needs… but this doesn’t help with the hallucinations.
It’s real but its not really there, that’s what I try to keep telling myself. When I have these dreams they very often relate to travel… moving somewhere… going somewhere… fetching something… I don’t know why. I miss… well… I miss going shopping… simple things… being able to move.
I never reacted too badly to the diagnosis when it first came along… I just regarded it as a nuisance… other people don’t understand it… how it slows down the thinking process… it has… slowed down my thinking… days seem shorter for me now… time passes and I don’t know if I’m awake.
Am I definitely in the right room? Am I in bed? How would I have got back into bed then? Should I just lie here then? Is that what I should do? Am I on the floor? Did I fall down a hole?
I think this has been a minor hallucination… a very small one. It’s happened before… the doctor knows about it… and the neurologist knows about it. You see if you know where you are you should be able to determine whether you’re awake or asleep… This is starting up now… not knowing if I’m awake or asleep… I’m not worried... or I try not to be worried. You see the trouble is with this medication is that you dream a lot… you dream vivid dreams. They’re dreams about going somewhere… moving or doing something… usually related to my previous activity before going to sleep. I think that’s what happens when you cross over from consciousness into sleep. Those last thoughts follow you… and you dream vivid dreams.
I’m fighting a fatigue 24/7… you have to fight this fatigue… it doesn’t go away when you sleep because when you sleep you wake up and the rest hasn’t done you any good… the fatigue still remains… so there are no more good days… if you do manage to get some sleep… or you’re unconscious, it gets no better. I think it would be better now if I were asleep all the time.
I’m really tired all the time now… and I can’t handle the radio either… I’m not strong enough… it’s too heavy and I just don’t have the dexterity, and there aren’t any staff to help tune it… nobody helps me… it’s no good now… all I can do is sleep… and I had another hallucination I didn’t mention. I thought there was a staircase leading down from this room into a basement… two flights of stairs leading down from the corners of the room into a basement… a staircase going down under where they’ve put the table.
I didn’t know if I was awake or asleep… I didn’t know where I was… I decided I must be here because I recognised the flooring and the line of the door and so on. I knew I was here but I didn’t remember the steps leading to the basement and I wanted to get up out of this chair and go outside but I couldn’t get up out of the chair. I don’t think there was any real danger of me falling down the steps, even though they are steep, because I was too far from them and there are what appear to be banisters. I think if you look in the corner you can see the shadow left by the banister… that’s what I saw. I know there are no stairs.
I think the trouble is that I’ve been made to sit in this chair day after day. I’m made to sit in it so much with nothing to occupy my mind that I drop off to sleep… I drift in and out of consciousness. It’s like torture. I think for some reason that this chair is conducive to the inputting of hallucinations. The noise is present in all of my environments for the last two years so I’m quite accustomed to noise that would disturb other people… shouting and cries and so on… but what I don’t like is that the call bell itself is so unreliable… I can ring the bell for hours and nobody comes... I’m not sure it works. I’m sure they would come if they heard it… wouldn’t they? Maybe they don’t know that I’m still here… we should give them the benefit of the doubt… they might think that I’m already dead.
When I first went to the GP he wouldn’t do anything because he said he had to wait for a letter from the hospital and it was never typed… then they lost the file… so there was a hiatus there… when we did finally get a letter… he waited too long… he took steps eventually… made a phone call then wrote to the neurologist… it delayed the appointment with a neurologist for six months or more by which time I was struggling.
I used to visit a clinic for eye drops and one day one of the nurses saw me. She said, “You don’t look too hot today, John, are you feeling alright?” I told her, “I don’t feel too good now.” She said that she could arrange for me to have a bit of extra help for a time, just over Christmas… I said, “Yes please.” Off I toddled for a week or two and I never came out… I never went back to my own home again… that was five or six years ago in the autumn of 1966.
People were reluctant to tell me what would happen to me… when I came here they were less than frank… and they continue to be less than frank. They have plenty of opportunity not to be frank and they avail themselves of it. I reserve my criticisms for the seniors, the carers have a job to do and for the most part they do it well enough. My criticisms are for the managers who make money by putting too few carers on the wards. I think I deserve better than I get. All these people are what I’d call economical with information. My life’s always been a bit out of reach.
There are two episodes I can tell you today, two early memories… since we started this I’ve spent some time trying to push back into my memory… this is 1938… so I would have been three years two months… something like that. It’s a real memory… we had no opportunity in 1939 to go on a picnic because we moved up to Yorkshire. So I’m certain that this is the summer of 1938. I remember going on a picnic from my Grandmother’s house… it was a Thames river picnic… a route of the riverbank picnic… like you have in The Wind in the Willows… and I remember Templeton, one of my father’s Admiralty friends had a Riley 9… one of those very old cars… he had to go back and bring the kettle… he’d forgotten to pack the kettle with the primus stove… off he toddled.
Templeton was in the Admiralty… he had the distinction of having served in World War One for one day. He arrived in France at 11 o’clock on the day of the armistice… he raced through the night to the front and when he got out they told him he was too late. He arrived to the minute as the firing stopped. Wallace’s wife was clearing out the attic after he died and she came across one of those long handled grenades. The postman identified what it was. It was still armed. It seems that he’d been at the front for 30 minutes and he’d picked up a grenade and brought it back as a souvenir.
The way I handle the routine is this… if you’ve got any thoughts in your mouth as I have at the moment, you try to get it out… and I can’t always take what I’ve got in my mouth, I can’t get it out… it’s just like a piece of cherry stuck in the mouth. It’s absurd. I know it is… you always concentrate on the next thing you’re going to do… you say, “What are we going to do next?” Sometimes the nurses say, “What do you mean by next?” I say, “Is there anything we do next?” it’s like limbo… one day is the same as the next… it’s the same in prison… it would be the same in prison… do you know Leonard Woolf, the author? He was posted to Sri Lanka in 1904 when he was a very young man… into the colonial service and he had a district to look after and in this district there happened to be a prison and because it was his district he had to attend the executions… he had to be there for any executions… when they took place… he had nothing to do with the case at all… he said it was a most harrowing experience… and he said that the trouble with it was that he had official duties to read out the last words of the prisoners and the death sentence… he had to inspect the equipment and he didn’t know how to inspect it… nobody had shown him what he should be looking for and he was a young man just like yourself, listening to the words and checking the executioner’s equipment… when he came back he married Virginia Woolf and she committed suicide. Are you married?
The way people see me now… the way people regard me… is that I’m just a person lying in a bed… just another old bloke in bed… he can’t use his hands… well so what? He’s just another bloke in bed, there’s nothing special to say about him. They should take it from there but there isn’t very much they can take from there so that’s it for me, goodbye nurse.
My mind is still very sharp at times… you get a flash of the horror of the situation… flashes of acuity. Time passes differently now. I still dream much the same… moving downstairs… stairs and stages and passing through doorways. The dreams take away a lot of my energy. Am I asleep now?
I’ve learnt over very many months how to use the brain a little bit to my advantage… it seems that when I want to have tissue I don’t think of T for tissue, I think of T and I and that helps… usually if I’m looking for a word I think of the first two letters and the rest of it follows like train carriages… there are one or two the same in that sort of cupboard… I try not to use the word ‘tissue’ very often.
It’s getting worse you see… because of the approaching of dementia… I’m finding it rather hard to keep on track… I have all sorts of thoughts running in and out all the time and it’s difficult to pull out the one I want. Have I told you this before? I think that the next big thing for me is the onset of dementia… I think that it will suddenly come… I shall just have it… and then I’ll get no better… I shall drift off into a dementia just like Joseph did… we had a man called Joseph, he died… he came with me… he had dementia… I think I’m going to go that way… or I’m going that way now.
I think I need to drink much more water… cold water… I need to drink plenty of water… and they don’t give me enough here… they just give me sips, these so-called carers… these little girl carers, they give you a tiny sip of water and say, “Enough for now!” and then they disappear round that door.
I take far too many tablets… practically a breakfast of tablets interspersed throughout the day… the doctors do it automatically almost as a knee-jerk, they write a prescription and they don’t think how it feels to take them all… how wearing it all is… and they’re not all that regular… sometimes they are and sometimes they’re not… if they were regular you could use them to measure the passage of time.
All I remember about my grandfather isn’t really a memory at all… all I’ve got is… not an image… I remember somebody in the next room… someone in the bed… and my mother saying it was my grandfather… he had gone out or gone in… Shakespeare was much more specific with his ghosts.
This place is a parking place… that’s how I feel… an annex to death. I was told that I’d be here a short time but I don’t think there was ever any intention that I’d be going home. No one made a positive move to get me home… I’m at the end of my tether… it’s just dementia next… a whole procession of full stops… I find it difficult to focus on times… all I have is meals… I find it difficult… today I know it’s about 10.30 because it’s not long since breakfast… but if I sleep until twelve I might think it’s late afternoon… there’s nothing at all to help me. It’s all Mickey Mouse. I think the place is pushing me towards dementia.
Earlier on I was thinking about the gravel quarry where I used to play… the Piltdown quarry… it was privately owned near where I lived when I was a child… I used to walk along the railway lines with my mother. My mother had an interest in fossils… she had a small collection. In her time there was a lot of activity in Kenya in East Africa and she found all this endlessly fascinating… the excavations of Doctor Leakey… is this what you were saying?
It was in all the newspapers… you must have seen it... I’m not sure where her fascination lay… we’re digging down underground trying to make sense of the world in the very best way we can. Joseph was trying to do that but he was fighting a losing battle with dementia… and John, he can still be lucid… it’s some kind of scam… and...
… Dalmatians… you’ve got to make sure they don’t mix with other dogs too much… they don’t mix well… put them together and the consequences aren’t good. Doctor Leakey used to take pedigree Dalmatians to the digs in Africa… to the site
I’ve forgotten what I’m saying.
I guess this is it.