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 – 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.

My Dad’s a Goldfish – Mobility issues

cropped-goldfish-87-1254566814ncva1.jpgI can’t believe how long it is since I last put up a post on the blog. As always, I can only say I will try to do better and be more organised in future.

The Goldfish now started to sleep through the night so we could dispense with the overnighters who had been so disastrous, though they meant well.

The Goldfish seemed to enjoy his days at the day centre. As there were so few people attending the ratio of staff and volunteers to attendees was high, which meant he received plenty of attention, something he greatly enjoyed. However, it was becoming increasingly difficult to get him there – or anywhere – as his mobility had declined so much.

Even when he was still mobile but needed his walker, getting out the house was a hazardous event with two steps at the back door to be negotiated. I would go out first and stand at the bottom of the steps, while the Goldfish tilted his walking frame over the edge of the top step. He then sort of jumped down on to the next step, shoving the walker ahead of him while I grabbed hold of it to steady it and keep everything and everyone from landing in a heap. Health and Safety would have had a field day.

When he became reliant on his wheelchair we invested in a ramp – described in the catalogue as portable, though none of us, with the exception of the DH could have moved it. It weighed a ton. The front door steps were shallow and wide so this was where the ramp was placed. Leaving the house became slightly less risky. When I first attempted to take the Goldfish out of the house that way I was unprepared for the weight of him and the chair on a slope. Terrified the wheelchair would shoot off to the bottom of the ramp, tipping out the Goldfish, I made the exit backwards.

The next step was to persuade the Goldfish to transfer from the wheelchair into the passenger seat of the car – without causing irreparable damage to my back. In fact it was soon impossible for either Wee-sis or I to manage this feat. The DH could but was it was clearly only a matter of time until he put his back out.

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The banana board, which proved not to be a good idea.

 

We asked for help and two district nurses (I think they are called community nurses now?) arrived with a banana board. As the name suggests this was a board shaped like a banana. One end slid onto the seat of the wheelchair, the other onto the car seat and the Goldfish could just slide along. That was the theory. While the Goldfish had the body strength to carry out the manoeuvre, he did not have the cognitive capacity to work out what to do. He perched on the board looking bemused. Scratch the banana board.

The only way was going to be to buy a vehicle into which we could push the wheelchair up a ramp and inside. Much discussion followed about whether or not we could justify using the Goldfish’s money on such an expensive item. The alternative was to give up on day centre and other outings and only be able to take the Goldfish out for walks in his wheelchair. The Scottish weather decided us and the Doblo came into our lives.

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With the purchase of the wheelchair accessible vehicle we could ensure the Goldfish was not trapped at home but could enjoy outings as before.

My Dad’s a Goldfish – Downhill slide

I had a holiday. The DH bought me a ticket to Vietnam for my 60th and off I went to stay with friends who were out there.

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One of many thousands of jaw-dropping beautiful shrines in Vietnam

I had a wonderful time although I suspected things were not going well at home when there was so little contact. In a way, I appreciated it because knowing there were problems would have made me anxious, especially as there was nothing I could have done about anything. On the other hand, we want to know, don’t we?

When I came home, the DH collected me from the station. The Goldfish was in the car. He didn’t speak to me, just stared out of the window. We arrived home and the DH said I should go in and he’d help the Goldfish out of the car. Only when we were inside did I realise what changes there had been in two weeks.

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The Goldfish after a serious downhill slide

He had been admitted to hospital with urinary tract infection. The infection had cleared up but the person who had come home was little more than a human shell. I was totally dazed for the first few days back trying to make sense of the changes.

The Goldfish was no longer able to walk. He couldn’t move from his chair. He barely spoke. He needed to be helped to eat and helped to drink. The house is full of machinery – like the hoist and stand-aid.

Of course, I blamed myself for going away but fortunately did not say so as this could only be taken as a criticism of the care – or lack of it – DH and Wee-sis had taken of the Goldfish in my absence. I knew it would have happened even if I had been here.

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We could never have managed without this piece of equipment – but how I hated it.

I kept quiet. I learned how to use the ‘stand-aid’ to transfer the Goldfish from his chair to his wheelchair, from his wheelchair to his bed, from his bed to the shower chair… I bought dishes whose bases could be filled with hot water so the food stayed warm during the long, long time it took the Goldfish to eat his meals. He did still enjoy his food. Sometimes helping him to eat made me think of a mother bird feeding a chick – his wide open mouth waiting for the next spoonful.

I didn’t cry, not then. I suppose in the moment there was no time for such self-indulgence, too much to do – but now the tears come. And they don’t help.

My Dad’s a Goldfish – Meets a tadpole

The Goldfish always loved babies and small children. Whenever we were out, whether in a supermarket or café, he would always have a smile for toddlers and they always smiled right back at him. ‘Wee toots’ he called them.

I don’t think I need say much about the day he first met his great grandson – the pictures say it all.

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The Goldfish meets his great grandson

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Mutual admiration across the generations

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Great grandson, granny and great granddad