Word finding, as a blog reader gently reminded me, is more a case of word retrieval. Her comment yesterday ended with this hilarious quote; ‘If I had a second brain it would be lonely!’ I often say, ‘the lights are on but no-one s home.’
But enough of the fun stuff! Word retrieval or word finding is a major issue for people with dementia, and helping us with it is a challenge for others. In fact, trying to help us with it can make it worse.
I wrote in 2011, ‘For the memory impaired, memory is like a stack of china; if you try to pull a plate from the middle, the whole thing comes crashing down. We need to continue our stories chronologically, one china plate at a time.
For me, this is why it is important to give us time to collect what is left of our thoughts, and the time to find the words to tell you about them. It seems crucial to me that others resist the urge to give us a nudge to hurry us along as that will most likely make us stumble and lose our footing, i.e. our words. This is when our plates come crashing down.’
Visual cues can help, such as cheat sheets stuck in cupboards and around the home can help. My husband and sons sometimes play a type of charades, where they act out what I might possibly mean, or the word I am searching find for, rather than me act out and them guess! As they know me very well, this often works, as well as gives us a good laugh. Occasionally it doesn’t, and frustration creeps in!
My father in law who had Lewy Body dementia mostly just needed time… Lots of it! One word could take 20 minutes, but if we sat quietly and gave him the time, he more often than not found his thoughts and words. The difficulty in aged care facilities is they are often understaffed, and always very time poor. In a research study done some years ago, it was found that when a nurse or carer says to a patient; ‘I’ll be back in a minute’ they came back in an hour. Whether it is because they sometimes forget, or are simply too busy is irrelevant to the person waiting for assistance.
But if this is true, then for the person with dementia needing time to find their words, it is never going to happen. Nurses and carers want to put words in our mouths to save them time. And they often only attend to the basic care needs because that is all they have time for. Sometimes I see the lunch tray in a nursing home or hospital of someone requiring to be fed sitting there waiting for a staff member up to an hour or more after it arrived. If they don’t have time to feed someone when the meal is still hot, how or earth will they make time to sit patiently to give them the time to find their words?
In the end, I suspect many people with dementia give up trying to find the words to talk as it is less frustrating on themselves and others.
Would it be useful to call it “an invisible disabililty” or
“an invisible, never-ending funeral” – the never-ending funeral is what they call it in the US, and you just add “invisible” to it ……
or
“an invisible, living death” (i think this is my creation …… the living death part….. but can’t be surre)
Just try to call it something else ….. it might help????
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It’s like going in a door behind a person in a wheel chair. You want to hold the door for them but should you? It’s hard to know what to do, but in my mind if you wait patiently for the person to open the door themselves or retrieve the word they are looking for, you allow them victory and pride. I just always worry if I don’t offer help they will think I am rude when in fact I am most compassionate. A fine line to walk but I see victory and pride are far more important. Thanks my friend! Have a wonderful week and stay happy 🙂 Blessings…VK
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I think the door for the person in a wheelchair is more about being practical, no different than helping a mother with a pram, whereas the time needed for people with dementia to find their words is simply about allowing them the time to do somehting they often can do for themselves… Blessings to you and yours too VK.
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…I thought my brain was “losing it”…..but no, as time has shown whilst using Adrenalin, my storage was ok, it was the retrieval mechanism that was/had failed;..I have recently reverted to taking just 30mg per day now…….so I conclude, at this stage of this insidious disease, I am restoring my brain function and needing less Adrenalin…..I am finally in control at last, of a disease that should have killed me by now…………this is an Australian First.!!!…it is World Breaking News.!!!…….the latest on A/D research in Australia.!!!!!!….
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This is spectacular and extraordinary news Tony… is anyone writing this up as a case study???
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…Hello Kate…….no, I do all my own research, which is monitored by my Doctor.
……otherwise, I don’t think many take me seriously, but I am living proof that Adrenalin works…if anyone has a query, please feel free to phone my Doctor on…[07] 3410 1155….Dr Frances Robinson….Bribie Island…
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Well done, and I think I might contact your doctor at some stage, or at least ask my neurologist to as he is more open to new ideas. It is such a shame people don’t/won’t take someone seriously, especially if something is working. I imagine you get the ‘well, you can’t have dementia’ line??!! I always say, if you’d had a stroke or been in a car accident, and were doing really well with brain rehab, people would no only applaud you, they would want to know what you are doing. And, they would not question the extent of your injury!!! Says a lot about others…
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….yes Kate,…… I cop all that misdiagnosed crap……and then I think , hang on a minute, I don’t have to prove anything to all these ‘Sudden Experts” on Alzheimers/Dementia………………….I am trying to resist this disease and put my story on the internet, for all too read, hoping I can just help someone/anyone who may be going through what I am………I look alright, but I cannot show you what is going on inside……….when I was dying, people seemed to understand and accept, now I am up and about….?????….
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it seems, my friend, people do find it easier to accept when you are dying… it’s a strange old world we live in!!!
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