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

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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 – 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.

 

My Dad’s a Goldfish – gallstones saga

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This is a long post and is part one of a two-part post. This describes the events which I believe triggered the metamorphosis into the Goldfish.

Saturday, January 20, 2007. Around 9pm, the Step-monster (though the monster title had not yet been entirely conferred at this point) called to say dad had severe stomach pain. The DH went to see him, found him in agony and called NHS 24. A doctor arrived within a couple of hours, thought it might be pancreatitis, gave a morphine injection and agreed it would be quicker for the DH to drive to the hospital rather than wait for an ambulance.

Maybe he arrived at the hospital doors sooner, but the admission process was no quicker. DH phoned with an update about 1am to say junior doctor had been round, had bloods taken, a drip put in and a ‘nil by mouth’ rule in place. Next update was to say dad had vomited but was dozing as the morphine kicked in. DH arrived home sometime after 2am.

Sunday 21 January. No doctors around this afternoon. Wee-sis went in at night. Reported back that dad was very confused.

Monday 22 January. Ultrasound followed by diagnosis of gallstones. The doctor is treating the inflammation and infection with antibiotics and hopes surgery won’t be necessary. If he sticks to a low-fat diet future episodes may be avoided. I hope someone will convince Step-monster of the necessity to put the frying pan and deep fat fryer into retirement. He was dozy when I visited but as he’s had nothing to eat since his evening meal on Saturday, it’s not surprising. The god-like creature called a consultant has not been to see him following the ultrasound so no one would cancel the fasting order. I managed to speak to someone else’s consultant who said he could have a cup of tea. By then the trolley was on its way out of the ward. I chased after it, managing to procure a cup of tepid, stewed brew.

Tuesday 23 January. It’s difficult visiting dad – so hard to find anything to talk about. It’s as if he’s shutting down mentally, living in his own private world. They’re keeping him in until he’s sorted out including eating properly. It might help if they fed him. Still nil by mouth. Apparently they are still considering surgery once the inflammation has cleared.

Wednesday 24 January. Dad’s condition is so bad now that that when they decided to operate after all, the anaesthetist said it wasn’t possible. His kidney function is not good. He has not eaten since last Saturday’s evening meal – well, he’s had two cups of consommé and two bowls of jelly. Other than that it’s sips of water and a drip. Now they’ve inserted a catheter so he doesn’t even get out of bed to go to the loo. They say they don’t want to give him food as that will start the production of bile and possibly worsen the gallbladder condition.

Thursday 25 January. He now has the additional complication of a lung infection. They decide to drain the gallbladder. Excruciatingly painful procedure for him. We are at our wits’ end. Can’t ever find a doctor to talk us through what’s happening. Nurses know nothing – or aren’t allowed to discuss anything.

Friday 26 January. The drain came out during the night so the poor man suffered that painful process for nothing. Today he has swollen up like a balloon – stomach, arms, legs all bloated – kidneys not functioning well…. it’s like everything’s shutting down. He’s been moved to the High Dependency Unit. What a difference! Why can’t they be like that in other wards? Totally different attitude – nurses who introduce themselves to dad, talk to him, joke with him and listen to him. He was already a bit brighter tonight. The doctor even came in to see him after she went off duty.

Saturday 27 January. Spoke too soon. Went in this afternoon. Dad totally out of it – hallucinating, rambling, and with no idea where he was. This wasn’t the usual sense of confusion, which we’ve noticed sometimes when physically he is not well, like last year when he had pneumonia. This was weird. It’s hard to explain. If you heard him you would have thought he was perfectly lucid. He talked about the doctor taking him out in the car to a town not far from where we live, picking up a hitchhiker – a student – described the house where they went, talked about there being a special place inside the car door for the urine container, the noise from the student’s room – on and on he went.

This afternoon only one staff nurse was on duty. He was talking to another patient’s family and pointedly ignoring me. Finally, apologising for interrupting, I explained my concerns. He said: “Oh, they all get confused.” I said this kind of confusion was really not normal (is there a normal confusion?) but he shrugged off my worries. I left the ward, burst into tears and phoned the DH, crying hysterically that they were killing my father.

When DH phoned the ward the staff nurse downplayed our concerns. DH asked him to call a doctor and nurse got really shirty saying he didn’t have time to call for doctors every 5 minutes. DH went to the hospital and found a duty doctor who took a message to one of the doctors who is on dad’s team. She had been in surgery and it was after 10pm when she went to see dad. She had to sedate him because he was by then so agitated he was trying to remove the drip and his catheter so he could leave the hospital.

28 January 2007. Dad not so confused and temperature down so looks like infections are clearing. The doctor who finally saw him last night said she thought the mental side was taking a couple of days to catch up with the physical decline and so, although he was physically improving, mentally he was still when he was at his weakest. He was moved back to ward 6. Hopefully tomorrow we’ll see a further improvement but he’s still to have the drain put into the gallbladder again. He’s still not allowed to eat although he won’t be having surgery.

29 January 2007. After eight days of starvation they finally gave dad some food.

To be continued…

 

My Dad’s a Goldfish – Sorry for the gap

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My last post included an apology for being so late in posting and here I am apologising again. What’s my excuse this time? For a long time I’ve been saying I’m going to turn this blog into a proper memoir and publish it. I thought that, as I have already written up so much of the Goldfish’s story it would be a fairly simple job to edit it and pull it into shape. Silly me!

I soon discovered the blog posts as they have been put up here don’t fit together into a book. Each post has its own narrative arc and stitching them together would make a very bitty sort of book – I knew what I mean. Basically, the whole thing needs to be restructured and after a several false starts I finally managed to find my way into it. While working on the start of the book, I’ve found it difficult to plan blog posts but hope now to get back on track.

I am not going to make any rash statements about when the book will be ready for publication because I know even once I succeed in structuring it properly it will need a lot more editing. I’d like to think it could be ready before the end of the year, though – as long as I don’t lose heart.

I realised, too, that in keeping blog posts to a reasonable length I’ve cut out quite a lot of material, which I think should be included in the book. While going through old diaries I was surprised to realise how lonely I was at times after I’d moved in with the Goldfish; upset at how some friends seemed to disappear and touched when others made an effort to visit.

I looked further back to pre-dementia diagnosis days. Ten years ago the Goldfish (who wasn’t a goldfish then) was admitted to hospital with severe abdominal pain, which was diagnosed as gallstones. Unfortunately, nothing went to plan and his condition became worse, partly because they starved him for over a week while they dithered about whether to operate.  I’ll tell you about that episode in the next post. Soon!

My Dad’s a Goldfish – if only I’d known

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I’m currently reading Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande.

Here’s a quote from the back of the book blurb “…what it’s like to get old and die, how medicine has changed this and how it hasn’t, where our ideas on death have gone wrong. The systems that being-mortal-illnessmedicine-and-what-matters-in-the-endwe have put in place to manage our mortality are manifestly failing, but, as Gawande reveals, it doesn’t have to be this way. The ultimate goal, after all, is not a good death, but a good life – all the way to the end.”

I’m only half way through it yet and his expose of modern medicine’s ‘we’ll fix it’ approach is depressing (though doesn’t surprise me and although Gawande is writing about USA, it is the same here in the UK). There’s such ignorance of what people really want at the end of life and tremendous barriers put up whenever people do try to recreate the home environment. It’s very readable and I highly recommend it.

The reason for my ‘if only I’d known’ comes from a story about an elderly couple, Bella and Felix. While eating lunch, Bella begins to choke. Felix, a retired geriatrician explains. “As you get older, the lordosis [I had to look it up: the term lordosis refers to the normal inward curvature of the lumbar and cervical regions of the human spine] of your spine tips your head forward,” he said. “So when you look straight ahead it’s like looking up at the ceiling for anyone else. Try to swallow while looking up…”

If only I’d known to encourage the Goldfish to look down when eating my previous post on swallowing might have been different.

Still, no acquired knowledge is ever wasted: I’ll store this little nugget for when I get old.