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.

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 – trouble with feet

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We suspected for quite some time the day was coming when the Goldfish would no longer be deemed eligible for NHS podiatry services.

We’d heard rumours about the service being stopped. It had already been drastically cut and the Goldfish was only allowed to have his toenails cut once every twelve weeks.  Imagine three months without having your nails cut!  We found a private podiatrist who could come in between NHS appointments – but only once as she was already rushed off her feet (sorry, pun wasn’t intended).

The NHS podiatrist assured me the Goldfish would continue to receive regular (12-weekly) appointments.  When I told her we’d heard support workers were going to be trained to cut clients’ toenails both in residential homes and for people still living in their own homes. “No,” she said, “it can’t happen. It’s a skilled job. All kinds of things can go wrong if it’s not done properly – infections, in-growing toenails.  Podiatrists train for three to four years before they can be registered. You can’t just let anyone do it.”

Turns out they can. In due course a letter arrived saying the Goldfish had been assessed (by whom? When? How?) and was no longer eligible.  Every care agency would, apparently be sending staff on two-day training courses to learn how to cut toenails.  The private podiatrist was appalled.  “Two days?” she repeated when I told her. I trained for four years and I still spend several weeks each year on training courses to keep up to date. Two days!”

None of the Goldfish’s carers were at all keen and either said they hadn’t yet been trained or they did not have time. I can’t say I blamed them. I wouldn’t like to have to do it. Wiping the Goldfish’s behind was one thing – trying to cut his toenails was quite another.

One morning one the Goldfish’s toes was bleeding. The nail had come out of its bed. I phoned the number on the letter and asked how to access the podiatry service. She asked for the Goldfish’s name, address and date of birth and after a short time came back on the line to say he was not eligible. “We don’t run a nail-cutting service, you know.”

I said I understood that and explained about the bloody toe and was told to take the Goldfish to his doctor who would refer him to the podiatrist.  As the Goldfish had an excellent GP he was referred and given an appointment the same day.

We were back in the system.