My Dad’s a Goldfish – Going back

cropped-goldfish-87-1254566814ncva1.jpgSince I put up some of Dad’s army days photos on my last post I’ve been digging through the boxes of unsorted photos and am now in the process of scanning them. I’ll put some up soon, including one I found of the football team I posted last time which has names, in Dad’s handwriting, on the back.

I’m also scanning some very interesting photos of ceilidhs from the years on Islay – alcohol was clearly involved. Whisky, for sure. On an island of eight distilleries it would have to be!

The project to turn the Goldfish blog into a book, which I’ve mentioned before, is taking time. I had originally begun it with the diagnosis but wasn’t really happy with that starting point. I toyed with beginning at the end of Dad’s life or with when the Step-monster walked out on him. However, I think I’ve decided the best place to begin is the point at which my life changed – the day the Step-monster announced she thought it would be good if the Goldfish went into residential care one day a week.

My life totally changed that day so I thought I’d repost it – and you can tell me if it seems like a good place to begin. Funnily enough, Facebook reminded me today I posted this three years ago. I think it was about the second post on my blog.

Obviously, in the book, it won’t be exactly as this post.

over-the-bath-showerAfter some time the step-monster announced she thought it would be a good idea if the Goldfish went into the local residential home – “only one day a week so he can have lunch and a shower.” Wee-sis and I were horrified at this thin end of the wedge being shoved in. He’d hate residential care.

Since the dementia started he has become terribly confused – to the point of hallucinating – whenever he’s had to go into hospital, not knowing where he is and not understanding why he is there when we explain he is in hospital. We’ve had some of the most bizarre conversations when the Goldfish has been in hospital. Once, he was convinced the nurses’ station was a bakery and told Wee-sis to go and ask for a cake as they were just about to take one out of the oven. On another occasion he thought he had been taken to a hospital in the north of Scotland for blood tests and had been away overnight. “You’d think they would be able to do the tests here,” he complained, “instead of wasting all that time and petrol to go to Perth.”

In residential care we knew he would deteriorate fast. It was not an option Wee-sis and I were even going to consider. We could, though, understand step-monster’s difficulty in getting dad to clamber into the bath to use the over-the-bath shower. Apart from the dementia, he has serious mobility problems caused by an arthritic hip which gives him a lot of pain.

It was time to get social services involved, despite the step-monster not wanting anything to do with them. The decision was followed by much running around on my part talking to social services, getting referrals (nothing, I have learned can be done without a referral: it can be a doctor’s referral, a social worker’s referral, even a self-referral but the all-important referral must be made) An OT (occupational therapist) came along and suggested removing the bath and installing a walk-in shower. This will make life easier. Then someone else comes along to measure up, discuss colour schemes, the ordering and placement of handrails – and the costs involved. We are told it could be free if the Goldfish’s income and savings are below a certain amount but we know he isn’t eligible and decide not to go down the means-testing route. I could imagine him deciding to do without having the shower in rather than have someone asking personal questions about his pension and savings. There is, we are pleased to hear, a substantial discount available without the means test being necessary.

The CC (care co-ordinator) from social services came to confirm the work was going ahead and offered to provide a commode to be used while the lavatory is unplumbed during the day. We’ve been assured it will be plumbed in again and usable overnight. The step-monster didn’t think a commode is necessary. “We already have a facility in the bedroom,” she said.

“Oh, you already have a commode?” asked CC.

“Well, no,” this said with a wee self-deprecating smile, “but we manage.” What she means is she makes the Goldfish pee in a bucket if he needs to go in the night. I said it might be nicer for him to use a proper commode instead. CC agreed. “Oh, well, whatever you think. You’ll know best,” the step-monster said.

Commode duly arrived and the step-monster put it in the garage. Said he could use the ‘facility’ in the bedroom and if he needed a ‘number two’ she could take him up the road in her car to the supermarket!

As well as organizing the shower installation, I arranged to take the Goldfish out one day a week to give step-monster a break. We don’t actually see what difference it makes as she goes out and does her own thing every day anyway… Leaves the Goldfish parked in front of the telly. At least it will be something he will enjoy.

I hope Wee-sis can help out with some outings, too. We all – Wee-sis, DH and I – have to work for our living. Wee-sis is a support worker and does day and night shifts, DH runs his own business and I am a freelance journalist and writer. As I have no fixed hours (thought very definite fixed deadlines) I am the one who can most easily do this. In everyone else’s eyes at least.

On the first outing the Goldfish and I made together, the rain started as I pulled up to collect him. He was less than enthusiastic about going out in the rain and I understood why when I realized walking is so painful it takes him ages to go walk the twenty yards to where I’d parked. The rain didn’t stop until we came home.

Our first stop was at an art gallery/shop in a nearby town. There was a ‘country pursuits’ exhibition which I thought the Goldfish would enjoy. He sank onto the first seat he came to (which was in fact an exhibit and not intended for customers actually to sit on; the owner kindly turned a blind eye) and looked at the pictures he could see from where he sat. He liked the ones depicting hares.

Coffee and cake was next on the agenda which he devoured with relish before I drove along a coastal road, the two of us peering out through the rain at the glorious scenery. The Goldfish kept up a running commentary, naming trees, guessing their age and repeatedly saying: “I’ve driven along these roads a few times in my day.” When I say repeatedly, I mean roughly once every minute. We stopped for lunch at a café where he consumed – very slowly but with obvious pleasure – a huge bowl of soup plus a sandwich, coffee and an ice cream. There’s certainly nothing wrong with his appetite. Back in town I called in to see Wee-sis so the Goldfish could enjoy patting her dog. He always had dogs and misses having one around. Wee-sis also has cats, one of which really likes the Goldfish and made a beeline for his lap where he lay, purring and shedding masses of orange fur.

Wee-sis asked the Goldfish what he’d been doing, to which he replied: “Nothing. I’ve not been anywhere.” Six hours touring around, £50 on petrol, lunches and coffees and he doesn’t remember a thing about it!

My Dad’s a Goldfish – a poem until I get organised

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March has been a bit hectic. I was teaching on a creative writing course the first week and was then organising the launch of my latest book, Castle Douglas Through Time, so there hasn’t been much time to write new Goldfish posts.

I am giving you a poem, which was written some years ago. I remembered it while on the creative writing course when my co-tutor, Margaret Elphinstone, wrote something about not being allowed a bow and arrow because she was a girl. It reminded me of the Goldfish making a bow and arrow for me – he also made me stilts and taught me to walk on them. I was very lucky to have a father who seemed to think being a girl was no barrier to doing or becoming whatever I wanted.

The minister read the poem at the Goldfish’s funeral.

Losing dad
It’s funny how my dad was once
much taller than I;
flower-meadow-1977395_1280shrinking years have brought us closer,
almost level.

Despite his stoop, lines, loss of hair,
he still looks like dad: the man
who gave me names of birds, trees,
stood in our garden pointing out
the Pleiades, Pegasus, Orion’s
three-studded belt;

who helped me gather wild flowers –
red campion, ragged robin, star of Bethlehem –
pressing them between heavy books
for school projects;
who didn’t mind the lawn
littered with obstacles –
clothes horse, kitchen stools –
to his lawnmower’s progress
while my horse and I jumped clear
at White City;
who came to support me on every school sports day;
thought it fine for a girl to climb trees,
never laughed at my dreams,
opened my eyes to the world,
taught me the meaning of friendship and fairness.

But somehow my dad is fading,
empty spaces inside his head though
his voice sounds the same,

as he asks,

for the fiftieth time tonight:
what did you do today?

My Dad’s a Goldfish – if only I’d known

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I’m currently reading Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande.

Here’s a quote from the back of the book blurb “…what it’s like to get old and die, how medicine has changed this and how it hasn’t, where our ideas on death have gone wrong. The systems that being-mortal-illnessmedicine-and-what-matters-in-the-endwe have put in place to manage our mortality are manifestly failing, but, as Gawande reveals, it doesn’t have to be this way. The ultimate goal, after all, is not a good death, but a good life – all the way to the end.”

I’m only half way through it yet and his expose of modern medicine’s ‘we’ll fix it’ approach is depressing (though doesn’t surprise me and although Gawande is writing about USA, it is the same here in the UK). There’s such ignorance of what people really want at the end of life and tremendous barriers put up whenever people do try to recreate the home environment. It’s very readable and I highly recommend it.

The reason for my ‘if only I’d known’ comes from a story about an elderly couple, Bella and Felix. While eating lunch, Bella begins to choke. Felix, a retired geriatrician explains. “As you get older, the lordosis [I had to look it up: the term lordosis refers to the normal inward curvature of the lumbar and cervical regions of the human spine] of your spine tips your head forward,” he said. “So when you look straight ahead it’s like looking up at the ceiling for anyone else. Try to swallow while looking up…”

If only I’d known to encourage the Goldfish to look down when eating my previous post on swallowing might have been different.

Still, no acquired knowledge is ever wasted: I’ll store this little nugget for when I get old.

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 – 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.