My Dad’s a Goldfish – gallstones saga

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This is a long post and is part one of a two-part post. This describes the events which I believe triggered the metamorphosis into the Goldfish.

Saturday, January 20, 2007. Around 9pm, the Step-monster (though the monster title had not yet been entirely conferred at this point) called to say dad had severe stomach pain. The DH went to see him, found him in agony and called NHS 24. A doctor arrived within a couple of hours, thought it might be pancreatitis, gave a morphine injection and agreed it would be quicker for the DH to drive to the hospital rather than wait for an ambulance.

Maybe he arrived at the hospital doors sooner, but the admission process was no quicker. DH phoned with an update about 1am to say junior doctor had been round, had bloods taken, a drip put in and a ‘nil by mouth’ rule in place. Next update was to say dad had vomited but was dozing as the morphine kicked in. DH arrived home sometime after 2am.

Sunday 21 January. No doctors around this afternoon. Wee-sis went in at night. Reported back that dad was very confused.

Monday 22 January. Ultrasound followed by diagnosis of gallstones. The doctor is treating the inflammation and infection with antibiotics and hopes surgery won’t be necessary. If he sticks to a low-fat diet future episodes may be avoided. I hope someone will convince Step-monster of the necessity to put the frying pan and deep fat fryer into retirement. He was dozy when I visited but as he’s had nothing to eat since his evening meal on Saturday, it’s not surprising. The god-like creature called a consultant has not been to see him following the ultrasound so no one would cancel the fasting order. I managed to speak to someone else’s consultant who said he could have a cup of tea. By then the trolley was on its way out of the ward. I chased after it, managing to procure a cup of tepid, stewed brew.

Tuesday 23 January. It’s difficult visiting dad – so hard to find anything to talk about. It’s as if he’s shutting down mentally, living in his own private world. They’re keeping him in until he’s sorted out including eating properly. It might help if they fed him. Still nil by mouth. Apparently they are still considering surgery once the inflammation has cleared.

Wednesday 24 January. Dad’s condition is so bad now that that when they decided to operate after all, the anaesthetist said it wasn’t possible. His kidney function is not good. He has not eaten since last Saturday’s evening meal – well, he’s had two cups of consommé and two bowls of jelly. Other than that it’s sips of water and a drip. Now they’ve inserted a catheter so he doesn’t even get out of bed to go to the loo. They say they don’t want to give him food as that will start the production of bile and possibly worsen the gallbladder condition.

Thursday 25 January. He now has the additional complication of a lung infection. They decide to drain the gallbladder. Excruciatingly painful procedure for him. We are at our wits’ end. Can’t ever find a doctor to talk us through what’s happening. Nurses know nothing – or aren’t allowed to discuss anything.

Friday 26 January. The drain came out during the night so the poor man suffered that painful process for nothing. Today he has swollen up like a balloon – stomach, arms, legs all bloated – kidneys not functioning well…. it’s like everything’s shutting down. He’s been moved to the High Dependency Unit. What a difference! Why can’t they be like that in other wards? Totally different attitude – nurses who introduce themselves to dad, talk to him, joke with him and listen to him. He was already a bit brighter tonight. The doctor even came in to see him after she went off duty.

Saturday 27 January. Spoke too soon. Went in this afternoon. Dad totally out of it – hallucinating, rambling, and with no idea where he was. This wasn’t the usual sense of confusion, which we’ve noticed sometimes when physically he is not well, like last year when he had pneumonia. This was weird. It’s hard to explain. If you heard him you would have thought he was perfectly lucid. He talked about the doctor taking him out in the car to a town not far from where we live, picking up a hitchhiker – a student – described the house where they went, talked about there being a special place inside the car door for the urine container, the noise from the student’s room – on and on he went.

This afternoon only one staff nurse was on duty. He was talking to another patient’s family and pointedly ignoring me. Finally, apologising for interrupting, I explained my concerns. He said: “Oh, they all get confused.” I said this kind of confusion was really not normal (is there a normal confusion?) but he shrugged off my worries. I left the ward, burst into tears and phoned the DH, crying hysterically that they were killing my father.

When DH phoned the ward the staff nurse downplayed our concerns. DH asked him to call a doctor and nurse got really shirty saying he didn’t have time to call for doctors every 5 minutes. DH went to the hospital and found a duty doctor who took a message to one of the doctors who is on dad’s team. She had been in surgery and it was after 10pm when she went to see dad. She had to sedate him because he was by then so agitated he was trying to remove the drip and his catheter so he could leave the hospital.

28 January 2007. Dad not so confused and temperature down so looks like infections are clearing. The doctor who finally saw him last night said she thought the mental side was taking a couple of days to catch up with the physical decline and so, although he was physically improving, mentally he was still when he was at his weakest. He was moved back to ward 6. Hopefully tomorrow we’ll see a further improvement but he’s still to have the drain put into the gallbladder again. He’s still not allowed to eat although he won’t be having surgery.

29 January 2007. After eight days of starvation they finally gave dad some food.

To be continued…

 

My Dad’s a Goldfish – Sorry for the gap

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My last post included an apology for being so late in posting and here I am apologising again. What’s my excuse this time? For a long time I’ve been saying I’m going to turn this blog into a proper memoir and publish it. I thought that, as I have already written up so much of the Goldfish’s story it would be a fairly simple job to edit it and pull it into shape. Silly me!

I soon discovered the blog posts as they have been put up here don’t fit together into a book. Each post has its own narrative arc and stitching them together would make a very bitty sort of book – I knew what I mean. Basically, the whole thing needs to be restructured and after a several false starts I finally managed to find my way into it. While working on the start of the book, I’ve found it difficult to plan blog posts but hope now to get back on track.

I am not going to make any rash statements about when the book will be ready for publication because I know even once I succeed in structuring it properly it will need a lot more editing. I’d like to think it could be ready before the end of the year, though – as long as I don’t lose heart.

I realised, too, that in keeping blog posts to a reasonable length I’ve cut out quite a lot of material, which I think should be included in the book. While going through old diaries I was surprised to realise how lonely I was at times after I’d moved in with the Goldfish; upset at how some friends seemed to disappear and touched when others made an effort to visit.

I looked further back to pre-dementia diagnosis days. Ten years ago the Goldfish (who wasn’t a goldfish then) was admitted to hospital with severe abdominal pain, which was diagnosed as gallstones. Unfortunately, nothing went to plan and his condition became worse, partly because they starved him for over a week while they dithered about whether to operate.  I’ll tell you about that episode in the next post. Soon!

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 -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 – Mobility issues

cropped-goldfish-87-1254566814ncva1.jpgI can’t believe how long it is since I last put up a post on the blog. As always, I can only say I will try to do better and be more organised in future.

The Goldfish now started to sleep through the night so we could dispense with the overnighters who had been so disastrous, though they meant well.

The Goldfish seemed to enjoy his days at the day centre. As there were so few people attending the ratio of staff and volunteers to attendees was high, which meant he received plenty of attention, something he greatly enjoyed. However, it was becoming increasingly difficult to get him there – or anywhere – as his mobility had declined so much.

Even when he was still mobile but needed his walker, getting out the house was a hazardous event with two steps at the back door to be negotiated. I would go out first and stand at the bottom of the steps, while the Goldfish tilted his walking frame over the edge of the top step. He then sort of jumped down on to the next step, shoving the walker ahead of him while I grabbed hold of it to steady it and keep everything and everyone from landing in a heap. Health and Safety would have had a field day.

When he became reliant on his wheelchair we invested in a ramp – described in the catalogue as portable, though none of us, with the exception of the DH could have moved it. It weighed a ton. The front door steps were shallow and wide so this was where the ramp was placed. Leaving the house became slightly less risky. When I first attempted to take the Goldfish out of the house that way I was unprepared for the weight of him and the chair on a slope. Terrified the wheelchair would shoot off to the bottom of the ramp, tipping out the Goldfish, I made the exit backwards.

The next step was to persuade the Goldfish to transfer from the wheelchair into the passenger seat of the car – without causing irreparable damage to my back. In fact it was soon impossible for either Wee-sis or I to manage this feat. The DH could but was it was clearly only a matter of time until he put his back out.

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The banana board, which proved not to be a good idea.

 

We asked for help and two district nurses (I think they are called community nurses now?) arrived with a banana board. As the name suggests this was a board shaped like a banana. One end slid onto the seat of the wheelchair, the other onto the car seat and the Goldfish could just slide along. That was the theory. While the Goldfish had the body strength to carry out the manoeuvre, he did not have the cognitive capacity to work out what to do. He perched on the board looking bemused. Scratch the banana board.

The only way was going to be to buy a vehicle into which we could push the wheelchair up a ramp and inside. Much discussion followed about whether or not we could justify using the Goldfish’s money on such an expensive item. The alternative was to give up on day centre and other outings and only be able to take the Goldfish out for walks in his wheelchair. The Scottish weather decided us and the Doblo came into our lives.

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With the purchase of the wheelchair accessible vehicle we could ensure the Goldfish was not trapped at home but could enjoy outings as before.