My Dad’s a Goldfish – making a movie


Well, a DVD. I was asked to take part along with some other carers and some Alzheimer charity and nursing staff. We’d gather in small groups to chat over tea and biscuits about different topics and the things we’ve found which work for us.

The topics included communication, eating and drinking, washing and dressing and moving around. The idea behind it was to create a film which would be useful for other unpaid carers like us as well as health and social care practitioners. I was with the eating and drinking group.

We were told it would be very informal and we shouldn’t bother about tarting ourselves up so I didn’t. Everyone else did. The camera focussing on us made us all a bit nervous to start with but it wasn’t long before we’d forgotten the camera and were chattering non-stop. Carers always have plenty to say!


From the DVD insert – I think you can see we all had plenty to say!

Some people with dementia seem to stop enjoying food – and we talked about ways of encouraging them to eat and drink. Although the Goldfish never lost his appetite, even when he had to be spoon fed, we had issues when he was unable to swallow and with getting him to drink enough. My top tips were mini sized Mars ice cream bars for when swallowing was a problem – the cold ice cream triggered the swallow reflex. It could, of course, be any ice cream but we found those worked best. Sometimes, I would yawn very widely and this made the Goldfish yawn – and swallow!

We were once shown on a training course various ways to re-set the swallow reflex, one of which was to gently stroke a finger down the person’s cheek. I tried this several times but it didn’t work and I felt it was my fault, that I wasn’t doing it properly. When we were filming I told the trainer, who was in my group, that for future training days I’d like to see things like this done with a real person. It’s horrible feeling useless when something doesn’t work.

We strayed off topic a couple of times which was fine because we were all learning useful things – and what wasn’t relevant could be edited out later. I was complaining about how difficult it is to get the Goldfish into the car. We’d bought one of those twirly cushion things which didn’t help in the slightest. One of the women in my groups said, ‘The best thing is a plastic fertiliser bag. They are nice and thick and slippery.’

I could visualise how well it would work but, ‘Where do you get fertiliser bags?’

She smiled and said, ‘I’m a farmer’s wife.’

We were invited to see the film after the first edit when it was still too long and it was fascinating to hear what things worked for other people. I was interested in hearing how people can’t make a point and leave it, they repeat it over and over as if trying to emphasise it when in fact by doing so what was a very good point is lost.

Some of us helped with editing the transcripts for the final cut and then we all gathered in a hotel for the premiere. It was entered in a competition but didn’t win – but, hey, we created something which may help other carers find a solution to a problem.


The DVD: This Worked For Me

My Dad’s a Goldfish – Gallstones (part two)

cropped-goldfish-87-1254566814ncva1.jpgI’ve rather left the Goldfish (before he was a Goldfish) languishing in hospital – see last post if you need a reminder.

He’d been admitted with agonising stomach pains, brought on by an infection caused by gallstones. After thirteen days, for ten of which he wasn’t allowed to eat in case they were going to operate, he was discharged – with his gallstones intact. The infection had been sorted (as had the pneumonia he contracted while in hospital) and the doctor decided a low fat diet would keep everything under control.

While it was great to bring him home, it was terrifying that his 80-year old wife is now ‘looking after’ him and hasn’t a clue about how to provide a low fat eating plan. She refused my offer to prepare a handout of healthy recipes. I think because she knows they might involve the use of the grill or oven, neither of which she will ever turn on because she thinks they are too expensive to use. If it can’t be microwaved or fried in a pan or deep fat fryer she doesn’t cook it. She used to use the oven once a year to cook Christmas dinner but hasn’t needed to do that since family members took over cooking the festive meal for her.

A few years before the gallstones episode dad took part in a blind trial for a cholesterol drug. The participants and their families were invited to cookery demonstrations to show the variety of low fat meals which could be helpful in reducing cholesterol. His wife refused to attend. Even when at the end of the trial dad was told he had been on the placebo but did, indeed, have high cholesterol, she refused to change her menus – which seemed often to consist of cheap sausages.

Dad’s welcome home from hospital meal consisted of scrambled eggs and Brussel sprouts. She’d found the sprouts on the reduced price shelf at the supermarket – an enormous bag of them, which will last for days. The meal, if unappetising, was at least low fat.

I printed out a couple of pages from a website which gave a clear and simply-put explanation of what it means to have gallstones. We added the hospital’s logo so it looked as though it came from a more official source than Google. Dad was absolutely delighted with it and said he now understood much better. It would be so simple to do something like that when they are in the hospital. The envelope also contained lists of foods divided into three columns for good, to be eaten in moderation and to avoid.

Oven chips are on the moderation list, which means a maximum of once a week. When she expressed delight at the inclusion of over chips the DH was puzzled because he knows she doesn’t use the oven – so how was she planning to cook them? You can’t do in a microwave. She seems to think it’s okay to chuck them in the deep fat fryer!

Despite all the problems, dad was looking and feeling better. He’d been told he’ll be called back after six weeks to see the consultant for a decision on taking out the gallbladder. In a way I hope they don’t because once it’s out there’s no need for a low fat diet – other than for his cholesterol and his heart….I’m sure she’s hurrying him towards an early grave. No, that’s unkind. She’s 80 and it’s hard for her to give up long held beliefs on diet and nutrition – and calling women ladies, and expecting men to open doors for them and believing that men provide for their wives financially while what the wives earn is ‘pin money’ and kept for themselves…

So far no sausages have appeared but she’s already sending the poor man up to Tesco to check out the reduced price shelf.

Nothing will ever convince me that the appalling treatment in hospital, combined with the appalling diet he was fed combined with the drugs to combat the high cholesterol (caused by the appalling diet) did not contribute hugely to the dementia.


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


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.


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.


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 – Jelly

In the great trifle debate, I’m not an advocate of jelly being included. In fact, I’m not really a jelly person. I’m sure I ate it at parties when I was a small child, possibly may even have liked it but other than a vague memory of mashing ice cream into red jelly, turning it into a pink swirl, I don’t really remember.

My mother made a kind of milk jelly with evaporated milk and I do recall eating cubes of undiluted jelly as a teenager. We’d heard or read somewhere the gelatine it contained was good for making our nails grow strong.

As an adult I have never felt the need to eat the wibbly-wobbly stuff and would never choose it on a menu – even if it did have champagne in it or liqueur soaked raspberries. I am beginning to worry though, if the time will come – when I’m in my dotage – if I will be forced to eat the stuff again?

The reason I am worrying about this is because I’ve noticed a marked tendency for nurses to order it for the Goldfish. Like me, the Goldfish would never choose jelly for pudding. His choice would be apple pie and custard, sticky toffee pudding, syrup sponge or, if it’s a cold sweet then he’d go for banoffee pie (his favourite) or a rich chocolate mousse. Okay, I know those are not all options on a hospital menu but the sponge puddings and apple pie are. Jelly ALWAYS is.

For some reason during this hospital stay it’s been impossible to fill in the menu for the Goldfish, which means the poor man has been presented with jelly on several occasions. He doesn’t eat it.

Me: “Would you like me to fill in dad’s menu card?”

Nurse: “Already done.”

Me: “How is his appetite? Is he eating better?”

Nurse: “Well, he didn’t eat his pudding.”

Me: “What was it?”

Nurse: “Jelly and ice cream. Nice and easy for him.”

Me: “But he doesn’t like jelly.”

Nurse: “He said that was what he wanted.”

Me: “It’s in the notes we brought in for you and in the notes they made on admission for likes and dislikes.”

Nurse: “I asked him what he wanted and he said he wanted jelly.”

Me: “No, you asked him if he wanted jelly and he nodded. He has dementia. If you asked him what he wanted he wouldn’t remember the list of choices and be able to decide. He can’t make choices but he is still the polite, eager-to-please gentleman he always was and so he will nod in agreement to whatever you ask or suggest.”

She scrawls NO JELLY!! on the board above the Goldfish’s bed and vanishes down the ward, no doubt swearing about stroppy family members who seem to think they know best.

My dad’s a goldfish – swallowing and spitting

The Goldfish started to have problems swallowing. I did some research and found some good articles, which I printed out for me and Wee-sis to study. I also asked the GP to for a referral to the speech and language specialist. She phoned to make an appointment to see the Goldfish and came to visit within days of the referral.

The Goldfish smiled at her when she arrived and promptly went to sleep so she couldn’t check what happens when he eats or drinks. It was a good meeting and she said pretty much what we’d read. The main difference, really, is the assumption that there is loss of appetite, which is not the case with the Goldfish who continues to enjoy his food – when he can swallow it.

Apart from our worries about food or liquid going into his lungs and setting up pneumonia, it must be really scary for the Goldfish. I tried not swallowing to see how it feels and it’s impossible for me not to swallow reflexively. The trouble is his swallow reflex is no longer working as it should. It’s as if he has forgotten how to swallow.

If he has taken a bite of toast or sandwich and we see it hasn’t gone down after an appropriate length of time, it is so tempting to suggest he takes a sip of juice or water to help it. That doesn’t work as the liquid joins the food in his mouth so he starts to acquire the appearance of a hamster. His eyes look panicked, though, and of course he can’t speak.

I keep a little jar – it once had a very nice creamy dessert – near us at meal time and refer to it as his spittoon. Holding it up, I ask if he wants to “spit it out”. Frantic nodding, and sometimes he succeeds in spitting out what’s in his mouth. Very often, though, nothing emerges and I have to take action and try to hook it out with my fingers – so grateful, he’s not a biter. Once, I removed almost an entire pancake with butter and jam. If it’s liquid, there’s nothing else for it but to put a straw between his lips and suck; then I spit.

At other times the Goldfish spits. I don’t mean when he can’t swallow – he just spits. I sincerely hope it’s not an indication of what he thinks of my cooking.

My Dad’s a Goldfish – war of nutrition continued

After a sleepless night, I went up to make breakfast for the Goldfish, who was already sitting at the kitchen table. Step-monster said she wasn’t going to allow it – she was perfectly capable and she was going to make his breakfast.

I pointed out she’d agreed yesterday but she shrugged and said: “I’ve changed my mind.”
I wasn’t prepared to argue with her in front of the Goldfish who was beginning to look upset and went into the living room. I phoned DH whose advice was to repeat what we agreed and persuade her that this was how it has to be in order to make sure the Goldfish had enough to eat.

She came through to the living room leaving the Goldfish eating breakfast cereal and battle commenced. It was like talking to someone whose head is stuffed with cotton wool. My words just vanished, not understood, possibly not even heard. She accepted the Goldfish had lost a lot of weight but not the reason for it, still maintaining ‘he eats very well.’
We were getting nowhere. Finally, I said: “Social services have it on record the Goldfish is a vulnerable adult at risk. If you won’t accept Wee-sis and I preparing the meals it could mean going to court. Surely you don’t want that.”

“Oh, well,” she said, “you do as you think best. But, you know, your dad won’t live forever.”

“Yes, I do know that, but while he’s still with us he deserves to be treated with respect and dignity and be provided with good food in appropriate quantities.”

She said she does treat him with respect and dignity. Oh, yeah, making him pee in a bucket is so dignified.

And so a whole new phase of my life begins with the goal of fattening up the Goldfish. He does enjoy his food and usually has two Weetabix with a banana and whole milk plus a slice of toast with butter and honey for his breakfast. At lunchtime it’s homemade soup and a sandwich – Wee-sis made him macaroni cheese the other day, which he enjoyed – and in the evening it’s meat and two veg. He loves mince and tatties.

You can't beat a plate of Scottish mince and tatties

You can’t beat a plate of Scottish mince and tatties

At first, whatever we put in front of him, though, elicited the same conditioned response: “Oh, goodness, what a plateful. I can’t eat all that.”

“That’s okay. Eat however much you want. You don’t have to eat it all.” He then scrapes the plate clean. If I ask him if he’d like any more he says no, he’s had plenty. If I say, there’s a wee bit left in the pot, could you finish it up? He is happy to oblige, before devouring a pudding.

I am so angry but there is nowhere for the anger to go because the step-monster blanks everything she doesn’t want to hear. She is worried to death about what this feeding business is costing! I really think her obsession with thrift is becoming an illness but her family are not picking up on it and just seem to see this sweet old lady – and totally ignore the fact she was starving my father. I believe she is showing signs of dementia and her need to save money has become an illness. Everything she buys is the cheapest the supermarket has on offer. She haunts the reduced price section. She is terrified we’re going to present her with a bill for the food we are supplying. However, I have the money from the sale of dad’s car and we’re using that for now. If it is the beginnings of dementia, I should feel compassion for her – but I can’t.

I’m not sleeping well. I absolutely hate walking into the Goldfish’s house not knowing what the step-monster is going to be like. Sometimes, I find the Goldfish sitting in the living room on his own and she’s nowhere to be seen. She hides out in her ‘study’ either on her computer or watching television. Although we have offered to bring enough food for them both, she refuses point blank to eat with him at lunch time or in the evening, which he finds very confusing and upsetting.

I’m so tired though, with all the planning and cooking and sorting out the rota with Wee-sis. It’s a tough gig, this, but we are getting into a routine. One day I’m on breakfast, and either Wee-sis does lunch or I take the Goldfish out and she does the evening meal. Sometimes the DH does a turn, which gives us a break. Tomorrow I am on for breakfast then I’m going to take him out for lunch and I hope DH will do the evening meal. Next day, Wee-sis does breakfast, and I’m on lunch and evening meal. The day the Goldfish is at day centre we don’t have to prepare and take his lunch – gives us time to cook! We’re both batch cooking and freezing meals to try to save some time.

We are keeping a food diary for the dietician. The Goldfish seems stronger and better physically and definitely putting on weight. Although he is a bit more alert mentally as his brain is now getting some nourishment, he will never recover the level it was before the starvation. Will top him up with vitamins.