My Dad’s a Goldfish – making a movie

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Well, a DVD. I was asked to take part along with some other carers and some Alzheimer charity and nursing staff. We’d gather in small groups to chat over tea and biscuits about different topics and the things we’ve found which work for us.

The topics included communication, eating and drinking, washing and dressing and moving around. The idea behind it was to create a film which would be useful for other unpaid carers like us as well as health and social care practitioners. I was with the eating and drinking group.

We were told it would be very informal and we shouldn’t bother about tarting ourselves up so I didn’t. Everyone else did. The camera focussing on us made us all a bit nervous to start with but it wasn’t long before we’d forgotten the camera and were chattering non-stop. Carers always have plenty to say!

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From the DVD insert – I think you can see we all had plenty to say!

Some people with dementia seem to stop enjoying food – and we talked about ways of encouraging them to eat and drink. Although the Goldfish never lost his appetite, even when he had to be spoon fed, we had issues when he was unable to swallow and with getting him to drink enough. My top tips were mini sized Mars ice cream bars for when swallowing was a problem – the cold ice cream triggered the swallow reflex. It could, of course, be any ice cream but we found those worked best. Sometimes, I would yawn very widely and this made the Goldfish yawn – and swallow!

We were once shown on a training course various ways to re-set the swallow reflex, one of which was to gently stroke a finger down the person’s cheek. I tried this several times but it didn’t work and I felt it was my fault, that I wasn’t doing it properly. When we were filming I told the trainer, who was in my group, that for future training days I’d like to see things like this done with a real person. It’s horrible feeling useless when something doesn’t work.

We strayed off topic a couple of times which was fine because we were all learning useful things – and what wasn’t relevant could be edited out later. I was complaining about how difficult it is to get the Goldfish into the car. We’d bought one of those twirly cushion things which didn’t help in the slightest. One of the women in my groups said, ‘The best thing is a plastic fertiliser bag. They are nice and thick and slippery.’

I could visualise how well it would work but, ‘Where do you get fertiliser bags?’

She smiled and said, ‘I’m a farmer’s wife.’

We were invited to see the film after the first edit when it was still too long and it was fascinating to hear what things worked for other people. I was interested in hearing how people can’t make a point and leave it, they repeat it over and over as if trying to emphasise it when in fact by doing so what was a very good point is lost.

Some of us helped with editing the transcripts for the final cut and then we all gathered in a hotel for the premiere. It was entered in a competition but didn’t win – but, hey, we created something which may help other carers find a solution to a problem.

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The DVD: This Worked For Me

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52 thoughts on “My Dad’s a Goldfish – making a movie

  1. That’s a really useful idea. We could do with more of this kind of thing, and not just for dementia. I know I was given no training, advice or help at all when Nick was at his worst…and I could really have used some practical advice on lifting a six foot male and things of that ilk!

    Liked by 3 people

    • I did get to go to quite a few training courses, some more useful than others. However, when it came to lifting (or moving and handling as they like to call it) there were problems. We had a stand aid and hoist, which I think you did, too, but although I used it on my own, as did my sister, carers were not allowed to – there always had to be two people. So my tip on how to persuade Dad to hold on by pretending he was on a motor bike wasn’t really acceptable!

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      • No, we didn’t have any equipment at home… just me 🙂 Only in the hospitals. It was never suggested and getting any kind of input was almost impossible. Health and safety would have had a nightmare at some of the things we got up to. Sounds like they would have squirmed around you and your dad too 😀

        Liked by 1 person

        • We learned to ask for equipment. I might do a post on that because we discovered there is so much more available – but only if people ask. We saw the stand aid in use when Dad was in hospital and said we wanted one. They laughed. We said we needed one and went to social services. We were lucky we had a brilliant care co-ordinator (not a qualified social worker but someone who had worked her way up from being a carer to a care home manager and never, ever forgot the caring component and that she was working with real people) and OT and they swung it for us. We would defintely have made health and safety squirm – not least with the boat winch. But that’s for another post 🙂

          Liked by 2 people

          • Yes, we found that too… afterwards, when it was a bit late. The problem is that if no-one tells you what might be available, you have no idea what to ask for or where to ask. When my partner was dying, it was the same. We only found out after his funeral, when people said, ‘but didn’t you have…?’ ..and no, because we didn’t even know it was out there.

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  2. Mary, what a fascinating post. Plus it is reassuring that if, god forbid, this should ever happen, that there are support groups and resources from ordinary people who have experienced this before you. Reading Sue’s comment above about her son Nick makes you realise how important the easy availability of information and resources are, because obviously when something as dreadful as this hits your family you are not in the best and most rational frame of mind

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    • Thanks, Paul. To be honest, with Dad’s dementia I always felt I was one step behind. I’d no sooner learnt something about dealing with one aspect when the condition changed and I was running to catch up. If I’d had a DVD like this, with real people talking about what they’ve learned, it would have helped.

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  3. A great post Mary and a fascinating and very necessary video. It’s time people realised that those actually on the ground coping with the illness have a better idea of what works or alternatives when it doesn’t. The experts don’t have all the answers. A shame the finished product didn’t win the prize but hopefully it will be still available to people regardless.
    xxx Huge Hugs xxx

    Liked by 2 people

    • Thanks, David. I suspect the video didn’t win because it wasn’t stuffed full of professionals telling carers what they should be doing. I learned lots of useful things – like the heavy plastic fertiliser bag being more useful than the shop-bought rotating cushion! Many thanks for commenting.

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  4. Fantastic initiative. There are many simple practical things that can make life so much easier if only people knew about them! My sister is a font of all wisdom when it comes to tips and tricks, having worked as a physio in aged care, a war veterans’ rehab co-ordinator and carer as well. Yet there are times when she too struggles so I can only imagine how difficult it must be for the lay person.

    Liked by 1 person

    • Thanks for commenting. I wish we could have used your sister’s skills! The only time a physio came to Dad was in the later stages when he couldn’t really understand what was being asked of him or why he was being asked to do something. She finally said to me – in Dad’s hearing – that she’d ask a colleague to come to see him because ‘She’s good at dealing with people like him.’ Her colleague never appeared. If we’d been able to access the service earlier things might have been different but cuts mean services are stretched too thinly.

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  5. It’s strange. Mary, but in the dementia world, it sometimes feels that we are a third world country when it comes to support and backup. One of my biggest regrets is not finding my voice in some of the situations with Dad and his stay in hospital.
    For example, did he definitely need to be on the catheter – he had one when he went to hospital, but he never had one at home.
    Why was there not more interaction with him when it was out of visiting time. Couldn’t someone have read to him / got him in a wheelchair for some fresh air in the garden? Although most parts of his hospital care was acceptable, why were some of the nurses there unable to understand that they were talking to elderly dignified people, not five year olds.
    Phew. feel better off loading that !

    Liked by 2 people

    • Thanks for dropping by, Julie. We also lost the battle over the catheter – put in when Dad was in hospital and as the stay grew longer so the chances of removing the catheter became slimmer. And, once a catheter is in place there’s the ongoing battle to keep the fluid intake up to prevent UTIs. I think most of us wish we’d spoken up sooner or louder over various issues.
      Glad offloading helped! 🙂

      Liked by 1 person

  6. What a great idea, Mary. I think I would have jumped at the chance to do this because of all the different ideas people bring to the table. While my mum was alive, I was sometimes at a loss as to what to do when she wouldn’t eat or drink, or when she would refuse to get up from the chair so we could take her with us when we would go out for a walk,. Social Services were so busy and understaffed that I hated to bother them and ask for advice. I’m sure this video will go on to help many unpaid carers in the future. Well done for being a part of it.

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    • Thanks, Hugh. There should be more initiatives like this. I learned new things to try as did others but, importantly, it was aimed at people who may not have the opportunity to get together with other carers. Getting Dad to drink was a nightmare and I was always on the lookout for exciting drinks in the supermarket. He seemed to like strong flavoured fruit juices. Food wasn’t such a concern, especially once we were told not to worry to much about nutrition – just let him have whatever he fancied – so there was lots of ice cream and puddings eaten!

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        • I know how dificult it is to get someone to drink enough! We tried all kinds of different cups, mugs, glasses, straws – all sorts. Ice cream was always a winner, though, which was good as we often crushed his pills and mixed it in.

          Liked by 1 person

  7. That’s a wonderful idea and a great project. It is usually the personal tips the ones that are the most helpful, and also the knowledge that you are not alone and other people have experienced similar difficulties to yours. A great achievement, Mary.

    Liked by 1 person

    • Thanks for dropping by, Olga. I wish I could take the credit but I was just a participant. The idea and the funding came from someone else. You are right, personal tips are the best because they’ve been tried and tested. And it was useful discussing what things didn’t work as well.

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  8. I’m always impressed by people who think a bit outside the box, which results in helping them and others. I can see in this case, it really will serve to help people who will have to come to this difficult road of dealing with someone with dementia. Very special post, yet again Mary 🙂

    Liked by 1 person

  9. A good post, Mary. Anything which helps you wonderful Carers is to be applauded. I did voluntary work at an OAP home for a while and it’s humbling. What some poor humans go through is lamentable and their Carers need a medal. I now find myself in an ‘old’ category and wonder how that happened (am mentally 40…) There, but for good fortune go I! Onwards and upwards.

    Liked by 1 person

    • Thanks, Joy. I’m pleased you enjoyed the post. Yes, I’d be an OAP now if the Government didn’t keep raising the age before I can get it, but like you I don’t feel as though I’m getting old! Well, maybe the knees are a bit creaky and my ability to remember names is dodgy!

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  10. Mary, my apologies for seeming to ignore your posts ’til now. I only this evening realized I wasn’t following (or was no longer following for some reason, because it seems to me that I WAS following at one time). In any case, I kept clicking around on your website (no comments possible there) and finally found you from your links and clicked your “follow” button. I need those reminders from the Reader to keep me jumping around the ‘net.

    I’m glad I didn’t miss this post. This film is a wonderful idea — and I’m sure it was fascinating being part of its production. I agree that documentaries like this one would be helpful in a number of venues (and for a number of diseases and disorders). I’m sorry the film didn’t win, despite the fact (or, actually BECAUSE of the fact) that it wasn’t “stuffed with professionals telling carers what they should be doing.” Thanks so much for sharing.

    Is it on YouTube – or at least a quickie letting folks know it is available otherwise? Now pinned to my Mental Health and Chronic Illness Board in any case.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD/EFD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to educate a world!”

    Liked by 1 person

        • Doctors lack the time and are not always the best people to help. I think those who’ve found their own way and learned from practical experience are often better placed to provide help to others goign through the same thing – whether that’s dementia or other condition.

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