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.

32 thoughts on “My Dad’s a Goldfish – to swallow or not to swallow?

  1. I have a relative in a similar predicament at the moment and care home staff suggested a teaspoon rather than larger spoon or fork. This has seemed to help in this case. As has letting her choose what she wants to eat. When she chose a large cream doughnut, she managed very large bites no bother at all, even then pointing at the other in the packet! As you say it’s very individually governed, and I think close observation, acute listening, and learning from experience is surely key. And waiting. My relative Peggy wasn’t enjoying her food, and leaving it, so a carer reported in front of her that they’d taken the meal away and brought an egg mayonaisse sandwich instead, which Peggy had loved and ate no problem. The carer then asked what else they could put on a sandwich. Peggy started thinking. I say ‘started’ because this process, these days, can take a while. She stared at me directly, which I think was helping her to concentrate. Far too soon, the carer started making suggestions—-a wee bit of soft cheese, chopped ham……. I struggled to hold Peggy’s gaze. I said ‘let’s wait and see what Peggy is thinking’. For a split second, carer and husband stopped suggesting, and looked at Peggy. Peggy’s lips were starting to move in reply, when the carer and husband, unable to wait any longer re-started with a barrage of suggestions—‘what about tuna’ ‘or a wee baked potato and tuna’ ‘or even tuna on an sandwich’ ‘or soft cheese in a baked potato’. Peggy’s lip had stopped moving as she looked from side to side as these suggestions were batted back and forth. Her answer gone forever. In a quiet moment later, I whispered to Peggy ‘they don’t always wait for you to get your answer out’. ‘No’ she said, sadly. I wonder which of other peoples preferences she’s sitting down to this lunchtime. Thought provoking, Mary.

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    • Thanks for your interesting comments, Janette. It’s so sad Peggy didn’t get the opportunity to say what she would like to eat. We were lucky that dad never lost his appetite and was always happy to eat – except when he couldn’t swallow and even then he could shovel in pancakes or toast until he looked like an elderly hamster. All we could do was encourage him to spit it out (or hoick it out for him) and wait until the reflex was working again. I can’t help thinking how frightening it must have been for him, unable to swallow or to explain what was happening.
      We were lucky that with dad being at home we could spend as long as necesary finding out what he’d like to eat. Ice cream, chocolate puddings and cream cakes were all high on his list!
      I hope you can find out what things Peggy might find tempting and pass it on to the staff.

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  2. I’m guessing the first time it was awfully scary. As for realising the chewed food is just sitting there, that must also have been terrible, especially wondering how your dad was feeling about it – fear and embarrassment maybe? And I sit here and wonder what would get me eating, if I was struggling? What I’d really demolish. I’d like to say the healthy choice but mini mars bar ice creams do sound pretty dandy.

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    • It was pretty scary each time it happened, Geoff, and dad was miserable – well, he looked miserable. He couldn’t actually say how he felt. When the swallow reflex stopped he couldn’t eat so we would try something really cold like the mini mars ice cream which often started the reflex action – shocked by the cold. His GP told us not to worry about what he ate – ice cream, chocolate, cream cakes because at that stage there was no point in worrying about weight gain or cholestrol. She was really good and quite happy for him to have a dram if he wanted it.

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  4. What very difficult times, Mary. Visiting the hospital, worrying about what Dad would be able to eat (and worrying that he may have been left to sleep through the meal time) was like a physical pain in our hearts. Dad still liked a certain banana type of drink and we were elated if he managed to drink a carton of it during visiting hours. We had lost all our reserve and social skills by this point and were cheering and encouraging him in quite an unruly manner! Our lovely nurse Penny was smiling and encouraging, she was what a nurse should be, she was able to cope with all the difficulties on the ward.

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    • Thanks for dropping by, Julie. Penny sounds like a real treasure – pity they aren’t all like her! And I know what you mean about losing your reserve. There comes a point when you don’t care a fig for what anyone else thinks and cheering on your dad with his banana drink was what was important.

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