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.

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.

My Dad’s a Goldfish – our last Christmas with him

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Christmas 2013

 

I suppose the approach of Christmas will always now be tinged with sadness. Our last Christmas together was 2013. From time to time during 2014 we thought he’d make it to the next one – and he almost did, dying three weeks before.

Christmas 2013 was unforgettable for several reasons. For one thing, Wee-sis and I felt it might be the last Christmas in which the Goldfish would be able to participate and enjoy it all – how right we were. However, at one point it looked as though we wouldn’t even see the Goldfish over Christmas because the step-monster’s daughter decided her mother and the Goldfish should come to her on Christmas Day. As they always go to the step-monster’s son on Boxing Day we were not going to see him other than a quick visit.

Much discussion and gnashing of teeth followed this announcement and Wee-sis (because she is so much more diplomatic than I am) was sent to negotiate with step-monster’s daughter. It was agreed Christmas dinner would be at my house. The step-monster decided to go to her daughter’s house instead, which rather pleased us. She would only spend the time moaning about how she hates Christmas and how glad she’ll be when it’s over.

Then, two days before Christmas the step-monster dropped a bombshell by announcing she was leaving the Goldfish and going to live in her own house. She’d inherited it from her mother and had been letting out for many years. She wasn’t going to say anything to the Goldfish! Nor was she going to move out until the end of January because she needed to get it decorated.

Throughout the last minute organisation for Christmas – the wrapping of gifts (nothing for the step-monster this year), shopping for food, planning the day – the worry of what was going to happen kept intruding. However, we put our fears for the future to the back of our minds and planned a lovely Christmas Day for the Goldfish.

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The much-loved Yorkshire terrier – with her head balanced very precariously!

 

He had a wonderful time opening his gifts. His favourite was a toy Yorkshire terrier we’d seen in the garden centre. The previous year he had admired it but in those days my ignorance of dementia was limitless and I had dismissed the idea of buying it for him. The following year on our regular pre-Christmas jaunts to the garden centre there were piles of toy dogs – but only one Yorkshire terrier. I didn’t hesitate. It went into the basket along with the Guinness chocolate he (and I) loved.

All through the day, he petted and talked to that dog as it sat on the arm of his chair. When we took him home, we put the dog beside him. Next day, it had been moved out of reach. I put it back on the arm of his chair. Next day, it had been moved out of reach. The step-monster couldn’t bear to see him stroking it as if it were a real dog, couldn’t bear to see the Goldfish behave like a child. I still have the dog. He sits on the back of the sofa. His head his hanging off now but he was hugely loved by the Goldfish for many months.

The Goldfish had a really happy day, surrounded by people who talked to him, grandchildren, nephews and nieces and partners came to visit him and he thoroughly enjoyed his Christmas dinner (with wine) – and had two puddings – and a couple of drams of malt whisky to finish the evening.

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I, along with Wee-sis and my son, watch with pleasure – and some amazement –  as the Goldfish tucks into his last Christmas dinner.

Now, with Christmas rapidly approaching I am so glad we made the last one we had together something really special to remember.

My Dad’s a Goldfish – the fidget box

cropped-goldfish-87-1254566814ncva1.jpgAs the Goldfish seems to sink further into himself conversation becomes increasingly limited, as, of course, does his ability to engage in the games of snakes and ladders or dominoes which he previously enjoyed.

We find looking at old photos is no longer a useful thing to do. He shows little interest, perhaps because he no longer recognises the people in the photos. I make up scrapbooks containing pictures of animals and birds, which he enjoys looking at sometimes. Companies produce all kinds of resources including reminiscence cards and DVDs of times gone past but they are expensive and the Goldfish seems to have moved beyond such activities.

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A few bits and pieces from the fidget box

 

Almost by accident, I hit on what we came to call the fidget box. Into a shoe-box sized box I put a random selection of miscellaneous objects. They included a small trophy with the legend, ‘World’s Best Grandad’, fastened inside a clear plastic box; a Christmas cake decoration with Santa in his sleigh being pulled by a reindeer; a small block of wood, one side of which had been charred; a tiny brass spirit level; a small mandala; three small juggling balls; a plastic wallet containing  a dozen old black and white postcards of working horses; a golfing tiepin; a glass paperweight with a picture of a peregrine falcon and a bull’s nose ring.

This latter object puzzled us for a while as we could not figure out what it was. The Goldfish shrugged whenever we asked him. Then, one day in one those moments of lucidity he said: “It’s a nose ring for a bull.”

“It’s quite fancy,” I said, indicating the inlaid metal work.

“It’s for when the bull’s in the show ring.”

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World’s best grandad trophy – a bit the worse for being fidgetted with!

The Goldfish had great fun opening the little trophy box, undoing the cord which held the trophy in place and removing the trophy. Then he’d put it back in the box. The fastening disappeared, as did one of the handles but he didn’t seem to mind, or even notice.

One of his favourite pastimes was picking at the leather backing of the paperweight. He finally, after much time and hard work, succeeded in removing it. He could also spend hours with a coaster, attempting to split the picture on the front from the backing.

 

The fidget box did not work its magic every time we

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The fidget box

proffered it to him. Sometimes the Goldfish ignored it. If he did not want to rummage through its contents nothing would persuade him to do so. At other times he would pick up the box and remove the lid himself and be totally content for hours.

Many of the resources and activities for sale are excellent but are more geared to be used when people still have the cognitive ability to recognise artefacts, people and events from the past. I’d recommend a do-it-yourself fidget box.