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 – to swallow or not to swallow?

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After the Goldfish started attending the new sensory day centre I attended several training sessions for carers. These included how to deal with dental hygiene, problems with swallowing and loss of appetite. The latter has never been a problem for the Goldfish, whose appetite remains, mostly, undiminished.

I was keen to learn what to do when the Goldfish couldn’t swallow. This problem – dysphagia is its medical term – comes and goes and I could never work out why some days he could swallow and other days he couldn’t. It’s both frustrating and scary. The speech and language person had been to see him and I was aware of what foods to avoid but that doesn’t help when something which went down wonderfully one day, is stored in his mouth another.

One morning, I had to fish about half a slice of breakfast toast out of his mouth. I cut his lunchtime sandwich into tiny squares but realised when I took him to visit a friend he still had them all in his mouth. The friend has dogs, which was partly why we were going, because the Goldfish loves to be able to pat a dog but he had lost all enthusiasm and sat in his wheelchair with a vacant expression. The friend produced tea and biscuits but the Goldfish remained disinterested – which was when I realised his mouth was already still full of sandwich. He could not swallow so no wonder he couldn’t be enthusiastic about the dogs or the shortbread on offer.

I didn’t feel able to start fishing about in his mouth while were in someone else’s house. It didn’t seem polite behaviour. It was not a successful visit. Once home, I managed to extract the sandwich mush. I cooked dinner but he, perhaps not surprisingly, didn’t eat any. Later in the evening, the swallow reflex returned and the Goldfish perked up. He had toast and honey and a banana – and a wee dram of whisky. There was a referendum debate (Scottish independence) on television and he seemed to follow it with some interest. He smiled and nodded whenever Alex Salmond was speaking!

I was, therefore, very keen to learn how to help the swallow reflex kick in. It sounded easy. Stroke downwards over the person’s cheek and he/she will swallow. Hah! When I tried it next time the Goldfish couldn’t swallow, it didn’t work. I stroked harder. Still no result. I tried touching his bottom lip with a cold spoon – no result. Frustrated and tired I sat back yawning. The Goldfish yawned back at me – and swallowed!

Main lesson to remember – every single person with dementia is different and what works for one might not work for another. And what works on one occasion may not work next time.

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 – Tales of Fantasy and Magic

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My friend Julie is using a bit of magic to raise funds for Alzheimer Scotland.

In memory of her father, Graham, who had Lewy Body dementia, Julie Bowmaker has written and published Tales of Fantasy and Magic, a book of nine rhyming stories for children. The book is beautifully illustrated throughout by Langholm-based artist Margaret Walty and has a foreword by Sally Magnusson who said: “Children will love this beautiful – and fun – book.”

There’s Delia Duck, who desperately needs a new hat, Ferdinando, an adventurous camel who learns to swim and a cat called Bonnie who makes her own spaceship along with other characters brought to life by Julie’s wordimg_0001s and Margaret Walty’s glorious illustrations.

Julie remembers how much her father enjoyed his outings in a minibus to the day centre, which prompted her to raise cash for Alzheimer Scotland so that others might benefit. She said: “I always remember him coming home in the minibus looking so pleased and happy. The work Alzheimer Scotland does with their day centres is so important for people with dementia – and their families, who need a break but need to know their loved ones are in good hands.”

She had 500 copies of Tales of Fantasy and Magic printed last year. The books is priced at £5.25, with £3 going to Alzheimer Scotland, the rest retained to pay reprint costs. She has already had to order a second print run and raised £1,500 for the charity.

img_0002She has worked so hard to sell those books. She has not put the book on Amazon because it would take a cut which would complicate the balancing of the books for Julie so she’s been selling them locally at craft fairs, Farmer’s Markets, garden centres and in as many outlets as she can convince to give a bit of shelf space.

The book is available online through a webstore Julie has set up. It’s at http://www.freewebstore.org/tales-of-fantasy-and-magic.

It would make a brilliant Christmas gift for any young children in your life.

My Dad’s a Goldfish – trouble with feet update

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You may remember the problem we had when the NHS decided the Goldfish was no longer eligible for podiatry care: ‘We are NOT a toenail cutting service’.

Then, when one of his toes started bleeding because the nail was being pulled from its bed he was reinstated and received a very swift – next day – appointment.

I take the Goldfish to the health centre, remove his shoes and socks and point out the bloody toe.  I am assured it’s nothing to worry about. The podiatrist will sort it in a jiffy, which he does. Not only does he sort the dislodged nail, he trims all the Goldfish’s toenails.

Before putting his socks back on, I ask about what appears to be pressure sores on the Goldfish’s heels. His feet are examined from every angle. The pressure sores are of much more concern than his toe nails.

As the Goldfish can’t transfer from his wheelchair to the patient’s chair, which is higher, (and there is no hoist) they have to bring a stool to raise his foot to a height the podiatrist can work at. I wish I have my camera with me, though I probably wouldn’t have the nerve to take a photo. Three members of staff are now in attendance and one of them is actually lying on the floor beneath the Goldfish’s foot. The Goldfish looks only mildly discomfited and rather amused by the performance.

The problem has arisen because when the Goldfish sits for long periods of time in his recliner chair with the footrest raised his heels are pressing into it causing the pressure sores. If he sits with his feet flat on the floor the sores may be prevented from worsening but fluid will collect around his ankles.

The podiatrist says someone will do a home visit once a week to work on the sores – so from being considered no longer eligible to have a three-monthly visit to the podiatrist (to cut NHS costs) the Goldfish now requires a far greater input at a much higher cost.

To ease the pressure on his heels we buy him some very fetching slippers. Check out these bad boys!

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Are these not just the bees’ knees? Have to say they were great and the Goldfish rather approved of them.