My Dad’s a Goldfish – a new kind of day care

Image200714144427-000The Goldfish has been offered a place at the day centre in the next town two days a week. It’s a pilot project designed for people in the later stages of dementia who are no longer able to benefit from the traditional day care service. We’ve known for some time the Man at the day centre isn’t happy at how little the Goldfish can participate so, despite having to spend a couple of hours driving him there and back each time, we were pleased.
It’s a pilot project designed – they tell me – to focus on sensory stimulation as a means of communication, including touch, smell, hearing, taste and sight. Tailored to each person’s individual needs and abilities attention will be given to nutrition and the programme will also help with elements of personal care which families may find difficult to do.

It does sound wonderful – but why must it be only when a person reaches the last stages of dementia they are considered eligible? Well, of course, we know the answer – money. Why is it that despite knowing the importance of mental stimulation, physical activities, socialising for people with dementia funding is not made available for those in the earlier stages? Answers on a postcard – directed to Government, not to me.

I take the Goldfish along for a session to see how it goes. It’s all very wonderful with lots of books, games, soft toys – including a cat which breathes (or would if it wasn’t broken. I’m quite glad of this as it seems a bit creepy to me) and a baby doll, the same weight as a real baby. It was like the staff had been let loose in a sweet shop. No sooner was the Goldfish engrossed in a picture book than someone brought him something else. He was enjoying a game batting a balloon backwards and forwards with the husband of another service user when a member of staff shoved another book at him. I fear sensory overload if it doesn’t calm down a bit.

I had to sign lots of permission forms (we will be given photos of the Goldfish enjoying himself and they might be used in research material made public) and go along for an interview with the researchers. I think the idea is to get a baseline picture of the Goldfish before he attends and then compare it after another interview later in the project.

Unfortunately, I alienate the researchers from the beginning by querying the first question on the form as I felt it was ambiguous. I also questioned what they meant when they asked how often the Goldfish smiles without any outside stimulus. I mean, he doesn’t sit and smile to himself. He smiles if people come in and speak to him; he smiles when someone jokes with him or he sees something funny on television – but he doesn’t sit smiling inanely to himself.
I’d been given a copy of the questionnaire while we were doing the interview but when I asked if I could take it to let Wee-sis see it they refused saying it was “our research tool”. Humph!

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14 thoughts on “My Dad’s a Goldfish – a new kind of day care

  1. It all sounded wonderful Mary, but I don’t see any reason as to why they wouldn’t let you take a copy for your sister, after all she had an interest in your dads care too. Pity you didn’t have your phone on you or a wee camera and you could have copied all the questions when they weren’t looking.
    I noticed in one of the homes mum stayed in that they played a lot with balloons and games but mum got fed up easily and still does.
    I had a wee chuckle when you were asked if your dad smiled to himself. I think that’s a bit daft too. If I saw mum sitting smiling for no reason I’d be asking her what was up or what was she planning? I don’t think it’s normal just to smile for nothing. Maybe I should try it tomorrow when I’m sitting with hubby. He will definitely think I’m up to no good!!

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    • Thanks for commenting, Ruth. I couldn’t help smiling to myself at the image of you sitting with a serene smile on your face waiting to see your hubby’s reaction!
      I think one of the problems with anything designed to be enjoyable or good for people with dementia in care home settings or day centres (and probably for elderly people without dementia) is that there seems to be the idea that ‘one size fits all’. Someone who mother with dementia thought the baby doll was wonderful because her mother loved to nurse it but another woman found it very upsetting because it brought back memories of a lost baby. Some people might get huge enjoyment from batting a balloon about, others may become fed up very quickly – and if the staff or family members don’t recognise that everyone is different with different needs then whatever therapies they put in place will not work.
      More and more I am coming to think we have a major problem because the training is not right. And it will probably never be right until being a carer is recognised as a proper, worthwhile job with a proper worthwhile salary and career structure. Okay, I’ll get off my soapbox now but maybe I shoudl write a blog post about this issue sometime.
      Thanks again.

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  2. Our family was lucky. In so many ways, of course, but especially in that I shared our parents’ care with my nine siblings. They were able to stay in their home, with live-in carers, plus each of us would take a month in turn to stay there once a year. But it was so hard to see dementia turn two people who had been in love for almost seventy years turn their anger and frustration on each other, and rob them of the people, couple, and parents they had so brilliantly been.

    I realized recently that I never think of them that way. Now, more than a year later, in my thoughts and when I talk to my siblings, they are always the wonderful funny quirky people from before the disease.

    Minds and memories are certainly strange.

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    • Sharing the care with nine other siblings must have made it a bit easier. My sister and I were determined dad should stay in his home, where he’d lived since 1961 and we are both glad we succeeded in this. The most fortunate thing for us was that dad retained his good nature. There were occasional blips when he suddenly took against my DH, thinking he was after his money but that was only for a short time. The saddest aspect was seeing him no longer able to read and lose interest in his precious books.

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  3. OMG Do not get me started !!! Somebody somewhere has come up with an idea—nothing wrong with the idea but for heavens sake get people with common sense and respect and common decency to carry out the programme. They weren’t giving him time with one thing before another was thrust at him! Unless that was part of the experiment–bombard the person with stimulii to see how much they can take. And for heavens sake, don’t question the questions !! Surely the stupid questions like the one about smiling, completely invalidates the research because it’s so ambiguous. If the people devising the research could welcome feedback such as yours, and tweak their questionnaire and the programme, wouldn’t it be so much more cost effective long term, to introduce it to people early on in the dementia journey rather than, as you say, at the end.
    Who in your description was WAITING for your Dad? Who was giving him TIME? Who was allowing him to finish with something before bombarding him with the next thing. A great enough idea, completely invalidated I fear. The only person waiting for your Dad and giving him time, was YOU!! There is nowhere enough training and consideration of the INDIVIDUAL in these approaches and these centres. One size fits all. Here’s a doll—– you’ll all love it. Here’s a balloon, you’ll all enjoy batting it away when it comes your way. When my day comes if anybody dares hand me a breathing toy cat, dementia or not, I swear I will set it upon them and send them packing!!!!!! Rant over, but honestly, you do despair at times. Can people be trained to value others and respect their individuality or do you have to be born with it? You’d hope the former, but sometimes you wonder.

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    • I share your irritation, Janette. Some of the staff on the project (and with home care) were brilliant – why is this always the exception rather than the rule? One realised it wasn’t for him and left. He wanted everything done to a strct schedule – time for a coffee, then a game, then a book… I admire that he saw he couldn’t deal with the biscuits and bowls of fruit being left on the table in case anyone wanted to nibble on something outwith the scheduled feeding times because this would interrupt the game.
      It’s almost as if ‘they’ think that dementia makes everyone the same. Groups of people who in their earlier lives would never have socialised are brought together and expected to play happily. We must meet up sometime to discuss how things could be.

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  4. Everyone’s different – and we’re still all different if we have dementia. My mother hated participating in any group activities – she liked to watch from the sidelines. And not being able to go over the questions with your sister was plain ridiculous!

    There’s something a little wrong with the training here, surely? Stimulus is all very well, but just shoving things at people is hopeless. I have a feeling you need to actually live with someone with dementia to really understand them – and even then, it’s not easy. My mum’s state of mind was different every time I visited. I could be a bit scared of what I’d find, though usually she calmed down and began to relax with me however bad she was … if I took the time to find a connection.

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    • Jenny, thanks for commenting. I replied to Janette’s comment before I saw yours making the point that even if we have dementia we are all different. It is a problem with training. Leaving aside the day centre issues, the agency whose staff we used for personal care boasted int he literature about their training. In reality if a new member of staff was lucky they got a couple of days inhouse training – most of which seemed to focus on health and safety and what they must not do – and a few days of shadowing a member of staff. This meant soemtimes we had a total stranger turn up with dad’s support worker to stand and watch while he had a shower and was dressed. We had a new support worker arrive who had never met dad as she’d been shadowing other people.
      Connecting with people is vital.

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    • It is truly terrifying, Lucinda. I was reading about scientists discovering how to repair memory loss in mice – human trials may start in 2017 – but it will be a long, long time before this results (if it ever does) in people being cured of Alzheimers. In the meantime NHS and social services struggle on with les and less money trying to deal with more people.

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