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 – 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.

Role Reversal

I apologise for the long delay from the last post. I’ve been away. I had planned to continue with feet (a follow up to the last post) but I haven’t written it up yet. Next time. For now, here’s a poem written after one of those nights, which seemed endless at the time.

Role reversal
Three a.m. – out of bed again.
Radiator stone cold. We stand
arms linked while I whistle
Red Red Robin, which you
fail to recognise.
I try Colonel Bogey.

Another, about toothbrushes, pink and blue,
who meet by the bathroom door,
elicits a smile. Memory glimmers –
maybe.

It’s a tune you used to whistle
when I was tiny, to make
me wee before bed. Now,
urine bottle held over a willie
no daughter expects to know so well,
I whistle for you
my entire repertoire.

 

 

My Dad’s a Goldfish – Please don’t argue

cropped-goldfish-87-1254566814ncva1.jpgA few weeks ago I re-blogged a post from Kay Bransford’s blog, Dealing with Dementia which listed 20 things we shouldn’t say to someone with dementia. One of the things on the list is not to correct or challenge trivial things; another was not to say ‘remember when’.

Out shopping recently in a department store I noticed a woman – middle-aged – pushing an elderly woman in a wheelchair.  She maneuvered the chair to a display of shoes. It was the raised voice which caught my attention more than anything but something alerted me to the fact the elderly woman had dementia. I’d missed the beginning of the conversation but am guessing the elderly woman had questioned the younger.

“You’re in Marks and Spencer’s, mother,” daughter shouts.

“I know where I am,” mother replies, “but what have I bought?”

“You haven’t bought anything. We just got here. Do you want to look at the shoes?”

I realise I’m going to be caught staring and shuffle off a bit, keeping the group – another woman pushing a man in a wheelchair seemed to be accompanying the mother and daughter – in my line of sight.

I’m still close enough to hear the mother tell her daughter she doesn’t want shoes and see her being pushed off in a different direction. I follow at what I hope is a discreet distance.

“I’d like a dressing gown.”

“You don’t need a dressing gown,” replies daughter. “You’ve got one.”

“They have nice ones in here.”

“I told you, you don’t need a dressing gown.” By this time she is pushing the wheelchair through the lingerie department, which carries a large stock of dressing gowns.

“Oh, lovely,” says mum, reaching out towards a long, fleecy one. “Such a pretty colour. And it feels so soft.”

“For goodness sake, mother, you do not need a dressing gown.” By now, the daughter’s voice is not only loud it has acquired that ‘see what I have to put up with?’ tone. She’s still pushing the chair through the lingerie department, her mother’s head swiveling from side to side trying to focus on the dressing gowns through which she is being pushed at what must seem a dizzying speed.

“Oh, wait, stop. I like that one. Let me see.”

Daughter speeds up. The woman pushing the other wheelchair suddenly shouts out to the mum. “You’ve already got a lovely dressing gown. Remember? You bought a new one last week.”

Mum does not remember. Mum is now becoming distressed; tears are not far away. Daughter gives a huge sigh. “Time to get out of here,” she exclaims, yanking the wheelchair round – so they go back the way they came. Yep, right through all the dressing gowns.

I want to talk to this woman. I want to tell her it would be so much better for everyone if she didn’t argue with her mother. Why not agree the dressing gown she likes is lovely? Why not allow her the pleasure of looking at them and deciding which one she likes best? Why can’t you agree with her? Why not find a way to distract her attention? Suggest you come back later to look for the one she likes best.

I want to shout at the woman who asked her if didn’t remember buying a dressing gown last week. Of course, she doesn’t remember. You know she has dementia.  Of course she doesn’t remember buying a dressing gown last week. Did she really buy one or were you just saying that? Were you lying to someone with dementia because you know they would have forgotten?

Of course, being British and trained from nappy-hood (diaper-hood) not to say or do anything which might cause a scene in public, I keep quiet. I’ve made mistakes, too.

 

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

My Dad’s a Goldfish – Home at last

cropped-goldfish-87-1254566814ncva1.jpgThree weeks after his seizure, the Goldfish was discharged from hospital. I had a busy day before he came home, tidying the house, shopping for food, buying a sofa so that when he is in his recliner chair we can be sitting close to him both for reasons of togetherness and hearing, paid his bills and cooked dinner. I also had to contact the various care agencies who provide care services to make sure the Goldfish was back on all their rotas.

The Goldfish was delighted to be home though he asked, almost at once where the step-monster had gone and when would she be back. It’s been a while since he asked about her and can only think coming back home jogged something in his memory. We did our usual muttering about how she’d gone to see her sister. How could we tell him she’d left him?

He has come home still with a catheter in place. While he was in the infirmary we had asked nurses repeatedly about this and why it had never been removed – not once – to see if he was able to pass urine without it. Finally tracked down the doctor who seemed genuinely surprised to hear the catheter had not been removed and wrote a note to this to be done. His instruction was ignored.

At the community hospital, I tried again and was initially told they’d give him a day or two to settle in first. Maybe I should have insisted they did it on the first day but I let it go. It was several days before they finally removed it and it was back in place before I went in to visit. They said he hadn’t passed urine. I tried pointing out that he could go for hours without having a pee, even when taking his water tablets, and I didn’t think they had left it out for long enough. The matter, as far as they were concerned, was now closed.

Now we had to be even more vigilant in making sure the Goldfish drank enough to prevent urinary tract infections and we had to learn how to deal with urine bags and night bags and all the rest of it. Oh, and how to get his elastic stockings on while keeping the catheter in place.

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About to do battle with the elastic stockings

It was lovely to have him home and see his obvious enjoyment of being back in familiar surroundings. The Goldfish went to bed happily around 11pm – and slept all night. Joy! And was more than ready for his breakfast next morning with his number one care assistant.

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Tucking into breakfast

My Dad’s A Goldfish – It’s not just me!

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The Goldfish in his chair enjoying a visit from a neighbour’s cat.

I’m interrupting the chronology of the Goldfish’s lengthy stay in hospital to share some words from the chief nursing officer in Scotland, Professor Fiona McQueen.

Often I feel I am a grumpy old woman, always complaining about nursing staff (and often some doctors and care agency staff) who don’t listen, are not professional and seem to have little or no understanding of patient care. I was delighted, therefore, to read first in the newspaper and then on her blog that it’s not just me. Someone a lot higher up the food chain has also noticed, publicly commented and expressed a desire to see things change.

In her New Year blog post Professor McQueen gives examples of the kind of bad practices she has witnessed during 2015 and writes: “I expect registered nurses to speak to all patients and their families with unconditional positive regard and never again will a registered nurse say to a patient, ‘if you wet the bed we’ll call you pishy-pants

“At all times I want nurses and midwives to put their patients first. No skipping off for a break when relatives need to speak to you or, worse, when patients should be having their meals served.”

As you might expect there has been a fair amount of outrage at her words from nursing staff and from their union. Gordon McKay, a registered nurse and chairman of Unison in NHS Ayrshire says: “My experience is that nurses work unpaid, way beyond their contracted hours to provide world-class care rather than ‘nipping off for breaks’ as is claimed, and that nurses speak to patients and relatives with the greatest of respect and kindness…”

Well, Mr McKay, threatening to call a patient pishy-pants is neither respectful nor kind.

The outraged ones don’t seem to have noticed Fiona McQueen also says: “I have met some outstanding nurses and midwives and hear of examples of care being delivered that is so good it’s breath taking.”

This is something many of us on this and other blogs have discussed and we’ve all said that there are nurses (and carers) who are wonderful and do a fantastic job – but they should not be the exception to the rule. I am sure many good nurses must be cheering (even if they have to cheer in private) with relief at Fiona McQueen’s words. How disheartening it must be to see colleagues bring your profession into disrepute.

Professor June Andrews, a registered nurse and director of the Dementia Services Development Centre at Stirling University has given her support to the chief nursing officer’s words. She says: “As a hard-working nurse, knowing that other nurses and midwives who, not for want of resources but because of attitude, bring down the profession, I would be glad to have them outed.”

The day after the story appeared in a national newspaper Fiona McQueen issued an apology saying she had not intended to offend hardworking nurses. I don’t think it IS the hardworking nurses who will be offended and I salute Professor McQueen for telling it as it is and for wanting all nursing staff to work together to eradicate bad practice.

You can read Fiona McQueen’s blog post here.