My Dad’s a Goldfish – Don’t ask, don’t get

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It is truly astonishing the amount of equipment required to allow someone to continue living in their own home when the person has dementia combined with mobility problems and other medical conditions.

Most things are actually available through social services or the NHS but it’s not quite as simple as putting in a request and receiving what is needed. For one thing, you don’t know what you’re going to need at different stages. The handrail by the back door, which was helpful when the Goldfish started to become a bit tottery but could still manage steps with his walking stick in one hand, was utterly useless when he had to use a walker on wheels. Try getting that, and him, down steps!

Also ‘they’ don’t always tell you what is available even though they are the ones supposedly trying to keep people living independently in their own homes. And sometimes what they provide is not what is needed.

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The wheeled walker. Can you imagine getting it and the Goldfish down the steps at the door without mishap? And can you picture the Goldfish sitting on it laughing uproariously as I ran up and down with it?

 

The Goldfish couldn’t get to grips with the NHS model of walker, which doesn’t have wheels and can’t be pushed along the ground so we bought him a walker on wheels. We were advised to go for the four-wheel type, which has a lidded storage box which doubles as a seat if the person needs a rest. The Goldfish thought it was hilarious to be pushed around the house while sitting on his like some god-like creature while I sweated and built up arm muscles which would have been useful on a building site. He also once mistook the lidded box for the toilet – but we’ll draw a veil over that.

When the Goldfish began to go walk-about at night, one instance involved the police who reported it to social services. We were given a door alarm and he was also – after being found unconscious on the floor one morning – given a fall detector.

Then came the time when the Goldfish couldn’t walk any distance and we requested and were provided with a manual wheelchair. We still had the crazy performance of getting him down the steps and into the car, out of the car at our destination and into the wheelchair. By the time they were able to provide a banana board, which fits between the chair and the car seat, the Goldfish, although physically able no longer had the mental capacity to understand what he should do.

We bought various bits and pieces to help – a thing which hooked on the door so the Goldfish could pull himself in could double as a tool to smash the window if we had a crash. Finally, we bought a vehicle

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It was lucky the Goldfish had some savings and could afford to buy this vehicle which allowed him regular outings – so many people arre not in such a fortunate position.

 

which was adapted to take the wheelchair up a ramp into the back. I am well aware many people are not in a situation to be able to do this. I guess their Goldfish can only enjoy outings within chair-pushing distance.

We were so lucky we had an exceptional occupational therapist who visited whenever we needed help. She recommended the handrail in the early days and, later, a raised toilet seat, a handrail by the loo, had joiners in to remove the raised lip in doorways and to re-hang the bedroom door so it opened in such a way we could wheel the chair in. It meant dad’s dressing gown hook was now on the outside of the door! But life was much easier when we didn’t have to dodge around a door.

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The Goldfish rather enjoyed using the stand aid – gripping the handles like he was on a motor bike!

One of the things which made the biggest difference to our lives was the stand aid, which enabled us to help the Goldfish out of his easy chair and into his wheelchair. We’d seen one used in the hospital. The DH said we needed one for home use. I think they just laughed at his request in the hospital but our wonderful occupational therapist was soon on the job and managed to obtain one for us. Without it, we were liable to put our backs out plus the Goldfish was likely to end up with pressure sores if he sat in his chair all day every day. Again, it was a case of asking for what we needed and again, I’m so aware that people who need such an aid probably don’t receive it because they don’t know about its existence, don’t know it is available and so don’t ask. And probably don’t have the exceptional occupational therapist the Goldfish had.

A major problem was that the support workers who came in would not use it without a second person helping – health and safety! This meant one of us always had to be on hand, which rather undid the benefit of having a carer in to give us a break. I read and re-read all the literature which came with the stand aid and nowhere did it say it required two people to operate it.

The second invaluable piece of equipment was a hospital bed. Getting the Goldfish into and out of bed had become a nightmare. By then he could do little to assist us and the strain on our backs was dreadful, plus it was horribly undignified for dad to be heaved around like a sack of coal. The bed had an air mattress to prevent pressure sores, it went down and went up, and the top could be raised, as could the bottom part if he needed to keep his feet up. I’m sure it could have made the bedtime drinks if we could figure out the programme!

We would not have had any of those aids had we not asked. No one told us they were available for use at home. Obviously, I can only speak from our experiences in south west Scotland – things may be different elsewhere (though I suspect not any better) but I’d advise anyone caring for a relative at home to ask and keep asking for anything and everything which will make life easier. They want to allow people to stay in their own homes (cheaper than residential care) so they need to make it easier to do so.

The other thing we were able to access for the Goldfish was a new, made to measure wheelchair – but this post is long enough so I’ll keep that story for next time.

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My Dad’s a Goldfish – And now for something different

cropped-goldfish-87-1254566814ncva1.jpgAnd by different, I mean totally unrelated to dementia or Goldfish. As followers of this blog know I have been posting rather infrequently over the last few months. One excuse reason has been that I’m in the process of converting the material from this blog into a proper memoir.

I have another excuse – I’ve been working on the publication of a short story collection – and it’s now up there  as an ebook on Amazon.

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Here’s the back-of-the-book blurb:  Shot through with flashes of humour the stories here will entertain, amuse, and make you think. Mary Smith’s debut collection of short stories is a real treat, introducing the reader to a diverse range of characters in a wide range of locations. A donkey boy in Pakistan dreams of buying luxuries for his mother; a mouth artist in rural Scotland longs to leave the circus; a visually impaired man has a problem with his socks; and a woman tries to come to terms with a frightening gift – or curse.

At only 99p (just over a dollar if you are across the Pond) it’s so much cheaper than a cup of coffee – and you can re-fill re-read it as often as you like.

It’s already got a couple of reviews on Amazon UK, one of which, on LindasBookBag blog,  had me wearing a huge grin all day. You can read it here. There’s also a sample story on Marcia Meara’s blog.

The ebook is available now on Amazon.

I promise I’ll get back to the Goldfish and dementia in my next post but I’m so excited at getting my new book out – first fiction I’ve written for ages – I wanted to share with everyone.

My Dad’s a Goldfish – making a movie

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Well, a DVD. I was asked to take part along with some other carers and some Alzheimer charity and nursing staff. We’d gather in small groups to chat over tea and biscuits about different topics and the things we’ve found which work for us.

The topics included communication, eating and drinking, washing and dressing and moving around. The idea behind it was to create a film which would be useful for other unpaid carers like us as well as health and social care practitioners. I was with the eating and drinking group.

We were told it would be very informal and we shouldn’t bother about tarting ourselves up so I didn’t. Everyone else did. The camera focussing on us made us all a bit nervous to start with but it wasn’t long before we’d forgotten the camera and were chattering non-stop. Carers always have plenty to say!

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From the DVD insert – I think you can see we all had plenty to say!

Some people with dementia seem to stop enjoying food – and we talked about ways of encouraging them to eat and drink. Although the Goldfish never lost his appetite, even when he had to be spoon fed, we had issues when he was unable to swallow and with getting him to drink enough. My top tips were mini sized Mars ice cream bars for when swallowing was a problem – the cold ice cream triggered the swallow reflex. It could, of course, be any ice cream but we found those worked best. Sometimes, I would yawn very widely and this made the Goldfish yawn – and swallow!

We were once shown on a training course various ways to re-set the swallow reflex, one of which was to gently stroke a finger down the person’s cheek. I tried this several times but it didn’t work and I felt it was my fault, that I wasn’t doing it properly. When we were filming I told the trainer, who was in my group, that for future training days I’d like to see things like this done with a real person. It’s horrible feeling useless when something doesn’t work.

We strayed off topic a couple of times which was fine because we were all learning useful things – and what wasn’t relevant could be edited out later. I was complaining about how difficult it is to get the Goldfish into the car. We’d bought one of those twirly cushion things which didn’t help in the slightest. One of the women in my groups said, ‘The best thing is a plastic fertiliser bag. They are nice and thick and slippery.’

I could visualise how well it would work but, ‘Where do you get fertiliser bags?’

She smiled and said, ‘I’m a farmer’s wife.’

We were invited to see the film after the first edit when it was still too long and it was fascinating to hear what things worked for other people. I was interested in hearing how people can’t make a point and leave it, they repeat it over and over as if trying to emphasise it when in fact by doing so what was a very good point is lost.

Some of us helped with editing the transcripts for the final cut and then we all gathered in a hotel for the premiere. It was entered in a competition but didn’t win – but, hey, we created something which may help other carers find a solution to a problem.

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The DVD: This Worked For Me

My Dad’s a Goldfish – Glimpses from the past

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I know, I know, I’m hopeless at posting regularly! I really meant to put a new post up days ago but I’ve been doing a bit more rummaging through photos and papers in what the DH calls the Dad Archive.

As well as finding lots of army photos, I’ve come across paperwork from those days including the order of service when the Lovat Scouts were stood down in Greece, a lovely reference from his Commanding Officer and his Lovat Scouts cap badge.

I’ve not found any photos for the period from when Dad left the army to when he went to live on Islay where he worked for the next eight years. He took many, many photos on Islay including colour slides (not sure how to deal with them so happy for advice if anyone knows) and he loved life on the island. I think if it hadn’t been for me, he’d never have left. In those days – 1950s – the school only went up to Primary 7 after which pupils had to go to the mainland and be boarders. Mum wasn’t keen on this idea (to think I might have had the opportunity to fulfil my dream of going to boarding school –  though in fact I’d have been at an ordinary secondary school and staying in lodgings) and when a vacancy on the mainland came up, Dad applied and we moved in 1960.

This time, I’m leaving the army days behind (though I’ll come back to them) to show some of the photos from the Islay days. This is where I was born and lived for the first seven years of my life.

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Dad and Mum on a picnic on Islay

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Dad with Betsy the dog, who growled if Mum tried to chastise me, and Blackie the cat named with enormous originality

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Dad on the peat bank on the back road between Bridgend and Port Ellen with Innes McLellan whose mother was my Godmother

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In full song at a ceilidh in our house, Bowmore, Islay. Dad with his arm round someone who was not his wife! Both of them smoking!!

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All the best parties happen in the kitchen. Beside the packet of Corn Flakes is our tea caddy which had a picture of the Queen on one side and Prince Phillip on the other. I always thought (when I was young) Dad looked like Phillip.

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Now, he’s got his arm round yet another woman not his wife! I was going to say it was possibly before I was born but I think that’s a tin of baby powder on the mantelpiece.

 

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Christmas or New Year – whichever, a good time was being had.

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I love that they still wear their ties however wrecked they are! And the man in the front is sitting on Paddy, my dog on wheels with which I learned to walk.

I hope you’ve enjoyed this glimpse into Dad’s past on Islay. When I look at the ceilidh pictures I’m reminded of when I found a Gaelic CD at Dad’s. I put it on and within minutes he was singing along, though it was about sixty years since he’d last heard those songs.  The power of music and song.

My Dad’s a Goldfish – Going back

cropped-goldfish-87-1254566814ncva1.jpgSince I put up some of Dad’s army days photos on my last post I’ve been digging through the boxes of unsorted photos and am now in the process of scanning them. I’ll put some up soon, including one I found of the football team I posted last time which has names, in Dad’s handwriting, on the back.

I’m also scanning some very interesting photos of ceilidhs from the years on Islay – alcohol was clearly involved. Whisky, for sure. On an island of eight distilleries it would have to be!

The project to turn the Goldfish blog into a book, which I’ve mentioned before, is taking time. I had originally begun it with the diagnosis but wasn’t really happy with that starting point. I toyed with beginning at the end of Dad’s life or with when the Step-monster walked out on him. However, I think I’ve decided the best place to begin is the point at which my life changed – the day the Step-monster announced she thought it would be good if the Goldfish went into residential care one day a week.

My life totally changed that day so I thought I’d repost it – and you can tell me if it seems like a good place to begin. Funnily enough, Facebook reminded me today I posted this three years ago. I think it was about the second post on my blog.

Obviously, in the book, it won’t be exactly as this post.

over-the-bath-showerAfter some time the step-monster announced she thought it would be a good idea if the Goldfish went into the local residential home – “only one day a week so he can have lunch and a shower.” Wee-sis and I were horrified at this thin end of the wedge being shoved in. He’d hate residential care.

Since the dementia started he has become terribly confused – to the point of hallucinating – whenever he’s had to go into hospital, not knowing where he is and not understanding why he is there when we explain he is in hospital. We’ve had some of the most bizarre conversations when the Goldfish has been in hospital. Once, he was convinced the nurses’ station was a bakery and told Wee-sis to go and ask for a cake as they were just about to take one out of the oven. On another occasion he thought he had been taken to a hospital in the north of Scotland for blood tests and had been away overnight. “You’d think they would be able to do the tests here,” he complained, “instead of wasting all that time and petrol to go to Perth.”

In residential care we knew he would deteriorate fast. It was not an option Wee-sis and I were even going to consider. We could, though, understand step-monster’s difficulty in getting dad to clamber into the bath to use the over-the-bath shower. Apart from the dementia, he has serious mobility problems caused by an arthritic hip which gives him a lot of pain.

It was time to get social services involved, despite the step-monster not wanting anything to do with them. The decision was followed by much running around on my part talking to social services, getting referrals (nothing, I have learned can be done without a referral: it can be a doctor’s referral, a social worker’s referral, even a self-referral but the all-important referral must be made) An OT (occupational therapist) came along and suggested removing the bath and installing a walk-in shower. This will make life easier. Then someone else comes along to measure up, discuss colour schemes, the ordering and placement of handrails – and the costs involved. We are told it could be free if the Goldfish’s income and savings are below a certain amount but we know he isn’t eligible and decide not to go down the means-testing route. I could imagine him deciding to do without having the shower in rather than have someone asking personal questions about his pension and savings. There is, we are pleased to hear, a substantial discount available without the means test being necessary.

The CC (care co-ordinator) from social services came to confirm the work was going ahead and offered to provide a commode to be used while the lavatory is unplumbed during the day. We’ve been assured it will be plumbed in again and usable overnight. The step-monster didn’t think a commode is necessary. “We already have a facility in the bedroom,” she said.

“Oh, you already have a commode?” asked CC.

“Well, no,” this said with a wee self-deprecating smile, “but we manage.” What she means is she makes the Goldfish pee in a bucket if he needs to go in the night. I said it might be nicer for him to use a proper commode instead. CC agreed. “Oh, well, whatever you think. You’ll know best,” the step-monster said.

Commode duly arrived and the step-monster put it in the garage. Said he could use the ‘facility’ in the bedroom and if he needed a ‘number two’ she could take him up the road in her car to the supermarket!

As well as organizing the shower installation, I arranged to take the Goldfish out one day a week to give step-monster a break. We don’t actually see what difference it makes as she goes out and does her own thing every day anyway… Leaves the Goldfish parked in front of the telly. At least it will be something he will enjoy.

I hope Wee-sis can help out with some outings, too. We all – Wee-sis, DH and I – have to work for our living. Wee-sis is a support worker and does day and night shifts, DH runs his own business and I am a freelance journalist and writer. As I have no fixed hours (thought very definite fixed deadlines) I am the one who can most easily do this. In everyone else’s eyes at least.

On the first outing the Goldfish and I made together, the rain started as I pulled up to collect him. He was less than enthusiastic about going out in the rain and I understood why when I realized walking is so painful it takes him ages to go walk the twenty yards to where I’d parked. The rain didn’t stop until we came home.

Our first stop was at an art gallery/shop in a nearby town. There was a ‘country pursuits’ exhibition which I thought the Goldfish would enjoy. He sank onto the first seat he came to (which was in fact an exhibit and not intended for customers actually to sit on; the owner kindly turned a blind eye) and looked at the pictures he could see from where he sat. He liked the ones depicting hares.

Coffee and cake was next on the agenda which he devoured with relish before I drove along a coastal road, the two of us peering out through the rain at the glorious scenery. The Goldfish kept up a running commentary, naming trees, guessing their age and repeatedly saying: “I’ve driven along these roads a few times in my day.” When I say repeatedly, I mean roughly once every minute. We stopped for lunch at a café where he consumed – very slowly but with obvious pleasure – a huge bowl of soup plus a sandwich, coffee and an ice cream. There’s certainly nothing wrong with his appetite. Back in town I called in to see Wee-sis so the Goldfish could enjoy patting her dog. He always had dogs and misses having one around. Wee-sis also has cats, one of which really likes the Goldfish and made a beeline for his lap where he lay, purring and shedding masses of orange fur.

Wee-sis asked the Goldfish what he’d been doing, to which he replied: “Nothing. I’ve not been anywhere.” Six hours touring around, £50 on petrol, lunches and coffees and he doesn’t remember a thing about it!

My Dad’s a Goldfish – Wishing I’d listened

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I’ve been sifting through a box of the Goldfish’s old photos wishing I’d paid more attention to the things he told me: about his childhood, his school days, his army days, his life as an adult on Islay (as opposed to my life as a child on Islay).   

I know he was in the Lovat Scouts. I think he joined up in 1944, which is when he turned 18. I think he may have done his initial training near Aberdeen. He was at some point stationed at a prisoner-of-war camp but I’m not sure where – possibly what’s now the Barony Agricultural College – though he told me of wonderful models the prisoners made of water wheels and bridges. He went to Greece, via Italy and when he talked about being in the army it was usually about that time in Greece he talked. He was stationed in Athens, billeted with a family there. Image200714143218-000

I know he loved it there – the people, the sunshine, the historical sites. I remember him talking about the fun of bargaining for things in the markets until the Americans arrived. They had so much money in their pockets and everything was, in their eyes, already so cheap they saw no need to bargain. Prices shot up making it harder for the British soldiers and taking away much of the cultural exchanges enjoyed before.

Anyone he served with still alive will be in their nineties. Maybe, though, their sons and daughters are, like me, now wishing they had paid more attention to the stories they were told. Maybe they have some old snapshots with faded names scribbled on a couple of them and are wondering about the pals their fathers had in Greece.

Here are some of the photos the Goldfish kept all those years. I’d be pleased if you could share far and wide just in case one of them rings a bell with someone whose father was in the Lovat Scouts from 1944. Some if not most of these photos seem to be taken in Salerno on their way to Greece. He also took many in Greece but mainly of the sites he visited rather than people. However, many photos remain to be sorted out.

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On the left is someone called Trevor. Possibly in Salerno.

 

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John Dunlop on the left

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John Dunlop second from the right – others unknown

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John Dunlop in the centre

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Tea time outside the tents. John Dunlop on left. I’m assuming this is the camp at Salerno before they went to Greece.

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In Greece? Unknown person on the left.

 

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Man on left called Bob

 

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On the back of this photo is written: Taken at the camp in Salerno Thursday 28/12/45. Dad was 19.

 

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Dad is not in this photo of what I take is a football team.

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Unknown soldier but must have been a friend of dad’s for him to have kept it.

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Dad on right on second row.

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John Dunlop on left, front row.

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RMS Otranto. This is not the HMS Otranto from WW1. RMS – Royal Mail Ship – became a troop ship and I think John Dunlop sailed to Italy in it or from Italy to Greece.

My Dad’s a Goldfish – Gallstones (part two)

cropped-goldfish-87-1254566814ncva1.jpgI’ve rather left the Goldfish (before he was a Goldfish) languishing in hospital – see last post if you need a reminder.

He’d been admitted with agonising stomach pains, brought on by an infection caused by gallstones. After thirteen days, for ten of which he wasn’t allowed to eat in case they were going to operate, he was discharged – with his gallstones intact. The infection had been sorted (as had the pneumonia he contracted while in hospital) and the doctor decided a low fat diet would keep everything under control.

While it was great to bring him home, it was terrifying that his 80-year old wife is now ‘looking after’ him and hasn’t a clue about how to provide a low fat eating plan. She refused my offer to prepare a handout of healthy recipes. I think because she knows they might involve the use of the grill or oven, neither of which she will ever turn on because she thinks they are too expensive to use. If it can’t be microwaved or fried in a pan or deep fat fryer she doesn’t cook it. She used to use the oven once a year to cook Christmas dinner but hasn’t needed to do that since family members took over cooking the festive meal for her.

A few years before the gallstones episode dad took part in a blind trial for a cholesterol drug. The participants and their families were invited to cookery demonstrations to show the variety of low fat meals which could be helpful in reducing cholesterol. His wife refused to attend. Even when at the end of the trial dad was told he had been on the placebo but did, indeed, have high cholesterol, she refused to change her menus – which seemed often to consist of cheap sausages.

Dad’s welcome home from hospital meal consisted of scrambled eggs and Brussel sprouts. She’d found the sprouts on the reduced price shelf at the supermarket – an enormous bag of them, which will last for days. The meal, if unappetising, was at least low fat.

I printed out a couple of pages from a website which gave a clear and simply-put explanation of what it means to have gallstones. We added the hospital’s logo so it looked as though it came from a more official source than Google. Dad was absolutely delighted with it and said he now understood much better. It would be so simple to do something like that when they are in the hospital. The envelope also contained lists of foods divided into three columns for good, to be eaten in moderation and to avoid.

Oven chips are on the moderation list, which means a maximum of once a week. When she expressed delight at the inclusion of over chips the DH was puzzled because he knows she doesn’t use the oven – so how was she planning to cook them? You can’t do in a microwave. She seems to think it’s okay to chuck them in the deep fat fryer!

Despite all the problems, dad was looking and feeling better. He’d been told he’ll be called back after six weeks to see the consultant for a decision on taking out the gallbladder. In a way I hope they don’t because once it’s out there’s no need for a low fat diet – other than for his cholesterol and his heart….I’m sure she’s hurrying him towards an early grave. No, that’s unkind. She’s 80 and it’s hard for her to give up long held beliefs on diet and nutrition – and calling women ladies, and expecting men to open doors for them and believing that men provide for their wives financially while what the wives earn is ‘pin money’ and kept for themselves…

So far no sausages have appeared but she’s already sending the poor man up to Tesco to check out the reduced price shelf.

Nothing will ever convince me that the appalling treatment in hospital, combined with the appalling diet he was fed combined with the drugs to combat the high cholesterol (caused by the appalling diet) did not contribute hugely to the dementia.