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…

 

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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 – a poem until I get organised

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March has been a bit hectic. I was teaching on a creative writing course the first week and was then organising the launch of my latest book, Castle Douglas Through Time, so there hasn’t been much time to write new Goldfish posts.

I am giving you a poem, which was written some years ago. I remembered it while on the creative writing course when my co-tutor, Margaret Elphinstone, wrote something about not being allowed a bow and arrow because she was a girl. It reminded me of the Goldfish making a bow and arrow for me – he also made me stilts and taught me to walk on them. I was very lucky to have a father who seemed to think being a girl was no barrier to doing or becoming whatever I wanted.

The minister read the poem at the Goldfish’s funeral.

Losing dad
It’s funny how my dad was once
much taller than I;
flower-meadow-1977395_1280shrinking years have brought us closer,
almost level.

Despite his stoop, lines, loss of hair,
he still looks like dad: the man
who gave me names of birds, trees,
stood in our garden pointing out
the Pleiades, Pegasus, Orion’s
three-studded belt;

who helped me gather wild flowers –
red campion, ragged robin, star of Bethlehem –
pressing them between heavy books
for school projects;
who didn’t mind the lawn
littered with obstacles –
clothes horse, kitchen stools –
to his lawnmower’s progress
while my horse and I jumped clear
at White City;
who came to support me on every school sports day;
thought it fine for a girl to climb trees,
never laughed at my dreams,
opened my eyes to the world,
taught me the meaning of friendship and fairness.

But somehow my dad is fading,
empty spaces inside his head though
his voice sounds the same,

as he asks,

for the fiftieth time tonight:
what did you do today?

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.

My Dad’s a Goldfish -The X factor

cropped-goldfish-87-1254566814ncva1.jpgI enjoy a good drama series (as long as it isn’t too gory as I’m a bit of a wuss in the gore department) and I’m hooked on Holby City but other than that and the news I don’t bother  much with television. When I was caring for the Goldfish, though, I watched an awful lot of television.

The Goldfish was a keen golfer before a combination of dementia and decreasing mobility made him stop – though he never admitted he didn’t play any longer. It was just that the weather was too cold, or too wet or some other contrived excuse for not being on the golf course. However, he enjoyed watching it on television. I’m not a golfer. The DH plays golf – a lot – and he and the Goldfish played together occasionally and then had a post mortem of the entire 18 holes when they came home. Yawn!

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The Goldfish loved golf – after he retired he played almost every day.

I have to say it for non-golfers, following golf on the telly is akin to watching paint dry. Mostly, what the Goldfish watched was on satellite and I’m sure we saw the same tournaments over and over again. I learned more about golf than I ever wanted to know but if the Goldfish was happy, I was happy. A rather lovely documentary about the late Seve Ballesteros was shown several times and each time, the Goldfish would tell me about when he followed him at some match or other. He didn’t realise Seve had died and after the first couple of time, I stopped telling him.

At least the Goldfish was always aware that he was watching golf on television. Once, when he still had some mobility, we were watching football (soccer). He got up and shuffled off. “Are you going to the loo?” I asked.

“No, I’m looking for the football. We’re playing.” Maybe even for an ardent golfer, football is more exciting?

As the Goldfish moved into the later stages of dementia, he understood less and less of what was on television. He’d never been a fan of soaps and he gave watching anything with a storyline as he could no longer process it, nor could he follow documentaries; even golf didn’t hold his attention for long. He did enjoy music and seemed to take real pleasure in watching the Edinburgh Military Tattoo, beating time on the arm of his chair as the marching bands strutted their stuff.

Astonishingly, he was totally entranced by the X Factor – at least I think it was the X Factor. The talent show where the contestants who have come through the first rounds are packed off to boot camp and then whittled down again. We hadn’t watched any of the first rounds so I didn’t have much of a clue about what was happening, never mind the Goldfish – or so I thought.

He was totally caught up in the drama of the eliminations and the progress to the next round. He seemed to enjoy hearing the music. He laughed out loud when successful band members were jumping up and down in excitement, as delighted for them as they were themselves. He sounded so gleeful it made me well up. He was teary-eyed on behalf of those who were sent home.

I’ve always said we were lucky the Goldfish retained his sense of humour right to the end. That evening, I realised how much more of him – his emotional responses, his empathy for others, and the core essence of him – remained intact.

My Dad’s a Goldfish – snake oil, anyone?

cropped-goldfish-87-1254566814ncva1.jpgToday I read in the paper about some research which indicates eating grapes might help stave off Alzheimer’s and improve memory. A handful of grapes twice a day, it seems, will boost attention and working memory performance by increasing the metabolic activity in those Alzheimer-related parts of the brain.grapes-2032838_640

If the Goldfish had still been around I’d have rushed to the supermarket to stock up and the poor man would have been eating grapes until they came out his ears – even though, in my head I would know that however many grapes I made him eat, it would make no difference. The research was carried out on people with early memory loss.

When the Goldfish was in the early stages, when he could still fudge his loss of memory – calling people ‘Sunshine’ to cover up the fact he’d forgotten their names – we bumbled along not really thinking about the future. Of course, I learned what I could about the condition but when I read the stuff about the final stages I think switched to denial mode – the things described – loss of mobility and of speech, no recognition of family or friends, incontinence, needing help with eating and drinking – couldn’t possibly be what we were facing in the future.

Later, of course, I was ready to try almost anything – not looking for a cure but for something which would slow down the relentless progress of dementia.

cocnutoilFor a while Wee-sis and I were almost convinced Organic Raw Virgin Coconut Oil was going to do the trick. In her work with adults with learning difficulties one of her colleagues used it for some of the service users who were developing dementia. An internet search brought up hundreds of articles about the efficacy of coconut oil, none, unfortunately with any scientific backing. One I remember was by a woman whose husband’s speech returned after she started using coconut oil. The woman in our local health food shop said she had started using it every day – she’ll let me know in ten years if it works.

We dolloped it in the Goldfish’s breakfast porridge, spread it on his toast, topped with honey, mixed it in yoghurt, and I used it in cooking. We were sure we detected a new brightness about the Goldfish who seemed more alert even if his words didn’t come back. We increased the dose. We gave him dreadful diarrhoea.

We did find it was a really good moisturiser so he had it massaged into his hands, feet and legs every night and went to bed smelling of coconut. Possibly, had we started to use it earlier it may have had more effect. Possibly, the grapes might have done something to slow down the pace of memory loss if we’d fed him them in the early days. Or, they might also have given him diarrhoea. We’ll never know.

Looking at the newspaper article, I see only ten people, average age 72, were tested, only half of whom were given the grapes – and not even fresh grapes but something called ‘whole grape powder’. Ho-hum, there’s something about all this that makes me think about those snake oil salesmen in olden days.

My Dad’s a Goldfish – Doing the mash up

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I’d only turned my back for a minute to take something out of the fridge. By the time I crossed the kitchen floor it was to see the Goldfish, very carefully pouring his glass of orange juice over his meat and potatoes.

All the rules about what never say to someone with dementia went out the window. “What are you doing? Why did you do that? Your dinner is ruined.”

He looked baffled – and hurt. He may have known why he did it but even so, he wasn’t able to explain. Perhaps he thought the orange juice was gravy or a sauce. Maybe, he just didn’t fancy what was on his plate and the orange juice was a deliberate act of protest?

I always said we were very lucky the Goldfish never lost his appetite but we did go through some strange and often difficult phases at mealtimes. The swallowing problem I already wrote about in my last post. There was also the mashing phase.

The Goldfish liked to mash his potatoes into the gravy on his plate. Fine, I do, too, but for a time he mashed endlessly. He’d mash and mash. No amount of encouragement or persuasion would persuade him to stop. The food not only soon looked pretty unappetising, it was stone cold. It took me a time to understand he had forgotten what to do next, forgotten how to use cutlery – so he carried on mashing.

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A good plate of Scottish mince and tatties – unmashed. Not going to show the horrible mashed up version.

He was not yet at the stage when he required (or would accept) spoon-feeding but he’d soon lose weight if I didn’t get him eating. Finger food worked. I gave him sandwiches, toast, cheese and biscuits – anything he could pick up and eat without having to use a fork or a spoon. The memory of how to use cutlery came back quite soon, thankfully, and the mashing stopped.

The false teeth popping in and out, was another phase we lived through for a while. He had a top set – the bottom teeth were his own – which he could somehow push with his tongue until they sort of hung out of over his bottom lip. Then, he’d do another manoeuvre which made the dentures pop back into his mouth again. It wasn’t pretty. Nor was his habit of removing the dentures when food got stuck under the plate and handing them to me to rinse under the tap. I’m a little bit squeamish about false teeth – dread the day I might need them – but, hey, I survived.

Sometimes, even without the mashing and the dancing dentures, mealtimes seemed to take forever. The purchase of a thermos plate helped. It had a compartment underneath which could be filled with hot water to keep the food warm whether we were going through the mashing stage or, most often, simply because the Goldfish ate very, very slowly.

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Ice cream was always a favourite but the Goldfish was never averse to anything sweet

Put a dish of ice cream or bread and butter pudding (topped with cream), chocolate mousse, apple pie and custard and it vanished like lightning. Occasionally, I felt a bit guilty about the amount of puddings the Goldfish devoured. I have to admit, his diet was not always well balanced. His very lovely GP was reassuring, telling me that as the Goldfish was almost 90 and approaching the last stages of dementia he could eat whatever he wanted to eat.