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 – whose memory?

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Whose memory?

You watch as I slather honey
on toast already oozing butter.
Eyes gleam with anticipation,
widen in delight at first bite.
You would have spread
both less thick, enjoy my generosity.

‘I used to keep bees,’ you say.
I nod, recall my Islay childhood
of honey combs dripping sticky amber
liquid gold, taste of honeysuckle,
heather. Your beeswax discs
slippery smooth won prizes.

You’re confused. How do I know these things?
And I understand this morning
I am not your daughter. I am
some random woman who gives you
toast and honey and tries
to claim your memories as hers.
Mary Smith

 

My Dad’s a Goldfish – Hospital

The Isle of Arran, Scotland

The Isle of Arran, Scotland

This time last year DH and I took a holiday to the island of Arran where we did lots of walking and I did hardly any cooking. We were beginning to unwind and feel the benefit of our break when Wee-sis rang to say the Goldfish had been rushed to hospital. They thought it might have been a TIA and were talking about doing a scan to see if there was any bleeding in the brain.

Wee-sis had been coming to give the Goldfish his breakfast and met the step-monster, hyperventilating at the garden gate. She had left the Goldfish unconscious on the floor. Wee-sis said she was afraid the step-monster was going to have a heart attack as she was in such a panic she could hardly breathe (step-monster, not Wee-sis). She called an ambulance, put the Goldfish into the recovery position and, to give her something useful to do, sent the step-monster to fetch a blanket.

The ambulance arrived within minutes. By then, the Goldfish had regained consciousness but couldn’t move his right arm and had lost the ability to speak which is why the paramedics suspected a stroke. Once in the ambulance, though, he seemed to be able to talk again although much of it didn’t make sense. Wee-sis says not to cut short our holiday but although we decided to stay on, it was no longer relaxing. Daily phone calls with progress reports were both looked forward to and dreaded. The signal where we are staying was terrible, other than in the supermarket car park, so calls were frequently abruptly cut off, with the ensuing quandary of who was calling whom back?

At least, DH and I kept reassuring ourselves the Goldfish was in Ward 18, the ward for people with dementia and last time he was admitted there we were impressed by the standard of care. The nursing staff had been cheerful and good-humoured, even when the Goldfish dumped another patient’s slippers in the bin. He’d apparently tried them on, realised they weren’t his and disposed of them. He’d appropriated his neighbour’s shaver and walking stick.

I took in his ‘This Is Me’ file which contains masses of personal information from the work he did before retirement to hobbies and interests, likes and dislikes. The nice thing was the nurses kept it with his notes and actually read it so were able to talk to him about his work and so on.

Hospital visiting hours can seem never-ending, especially when there is no real conversation with the patient. I took in dominoes and a magic painting set – remember them? All you need is water and a paintbrush and the colour appears as if by magic. The ones I bought were pictures of sportsmen and are specially made for people with dementia. Once the picture is complete it is left to dry and the colours fade so it can be used over and again. Time passed quickly with the Goldfish absorbed and happy, other visitors looking on enviously! The nurse in charge of the ward said if she’d been staying on the ward she’d have bought some for patients to us. I should have taken note of that ‘if I’d been staying’ remark.

Back from holiday and our first port of call is the hospital and Ward 18. We walked in to find the Goldfish sitting on a chair beside his bed in his pyjamas, no dressing gown and the bedside table was awash with spilt water which had also formed a puddle on the floor. He had rested his feet – no slippers – on the leg of the table to keep them out of the water. There was food including chips on the far from clean floor and an unidentifiable orange blob of something under his neighbouring patient’s chair.

The Goldfish was looking okay though anxious to come home. I spent time with him, telling him about our holiday, looking at the postcards I’d sent him, though one was totally saturated by the spilt water while the DH went off to speak to staff.

At the top of Goat Fell, Island of Arran - worth the effort for the views.

At the top of Goat Fell, Island of Arran – worth the effort for the views.

He came back disgruntled – it’s the weekend, no doctor has been to see the Goldfish yesterday or today, they don’t know why they didn’t do the scan Wee-sis said they were going to do, nor could they tell him very much at all about what the diagnosis was. We would have to wait until the next day to speak to someone who might know something. Depressing.

My Dad’s a Goldfish – a little incident

I took the Goldfish for coffee and cake at the garden centre. He loves the banoffee pie they serve there.

We had a tour of the shopping area first, which he always enjoys as there is so much to look at. I ask several times if he needs to go to the loo before we went to the coffee shop but he says he doesn’t need to go. He tucks into the huge slice of banoffee pie with gusto but moments later he announces he would soon need to spend a penny.

“Do you need to go right now?”

“No, it’s all right, I can wait.” He sips his coffee. “I hope they have a loo here. I’ll need to spend a penny soon.”

“Shall we go now? We can leave our coffee until we come back.”

“No, I can wait.” He takes another sip of coffee. “I’ll need to spend a penny soon.”

I gather up my bag and take the brakes off the wheelchair. “I’ve not finished my coffee,” he protests. “or my cake.”

“I thought you wanted to spend a penny? We can go to the loo and come back to finish your coffee.”

“Oh, all right then.” I wrap the remains of his pie in a couple of napkins and put it in my handbag, knowing it was unlikely we would come back.

I push the wheelchair to the accessible toilet, open the door, get him out of the wheelchair, hand him his walking stick and he totters over to the loo. I retreat to give him some privacy and wait outside the door. And I wait some more. I’m close to the gardening books but the more interesting books are further away and I don’t want him not to see me as soon as he comes out.

I wait some more. People who pass me several times smile in sympathy when they see the wheelchair.

Eventually, I notice the door handle turning and jump to attention. The Goldfish emerges very slowly, looking rather upset. He vaguely indicates behind him before flinging himself into his chair.

I see the floor is awash with water – well, on closer inspection, I realise it’s urine, some of which has wet his shoes and the hems of his trousers. In a corner of the toilet I spot his abandoned walking stick – and his underpants. At least he had the sense to take them off, which explains the length of time he was in there.

I pick them up, roll them up and shove them in my handbag, thinking the banoffee pie is now beyond saving. I give the floor a bit of a wipe with paper towels and we leave, looking as dignified as we can. To be honest, the Goldfish has already forgotten whatever happened in the toilet and I am reaching the stage of no longer being embarrassed at things which happen when we are out.

Things will happen, even worse things might happen.

My Dad’s a Goldfish – lunch group outing

I took the Goldfish to our first lunch group. We won’t go again. It’s very much a group for carers (i.e. partners) as much as for the people with dementia. Each demented person had a spouse with him/her – except for the Goldfish who had me. This prompted a lot of questions: Was I his main carer? Why wasn’t his wife with him? Was she dead?

In front of the Goldfish I couldn’t explain his wife is not interested in doing anything with her husband and wants other people – anyone else – to take him out of her presence as much as possible. These are people who actually care about their partners and want to enjoy doing things together despite the confusions and difficulties. I was impressed when I heard about how two couples are arranging to go away on holiday together, each looking out for each other’s partner.

The Goldfish was not happy. He didn’t eat all his meal, which is unlike him. He answered questions about his job, and living on Islay but didn’t ask anyone else questions. I don’t know if he realised how odd it was that he was the only one not part of a couple or if it was being with a group of total strangers. At one time this would not have worried him in the slightest and he would have relished meeting new people.

When he needed to go to the loo, I took him to the door of the gents and he said he would find his way back. He didn’t. One of the others went off to search and found him wandering, very confused, at the other bar in the hotel – trying to pay for the lunch for everyone. He brought him back, minus his walking stick which was later tracked down in the loo.

The step-monster was very disappointed when I said we wouldn’t go again, seeing it as a lost opportunity to get rid of her husband for a couple of hours. However, when I mentioned the cost of the lunch, she quickly agreed it was probably better not to go again!