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An admired friend was revealing some of the nightmares of life since her husband developed dementia. Dementia, they call it? From what I was hearing the spelling needed adjusting.

Demon-tia, more aptly.

Image of part of  a Sailing to Purgatory webpage to illustrate the article.
Dementia ... The distressing condition of dementia from a drawing by Alexander Johnston. A lithograph, 1892, after a drawing by Alexander Johnston, 1836/1841, for Sir Alexander Morison. Iconographic Collections Keywords: 1836; johnston, alexander. Many thanks to Wikipedia

‘I would never write a book about it,’ my friend said. ‘I try to forget the worst of it.

'We have both come a long way since diagnosis nearly two years ago.

‘But what works in one instance does not work forever.’

Living nightmare

What is dementia, other than a living nightmare for all concerned?

Google reports, ‘Dementia is a general term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life.

'Alzheimer's is the most common cause of dementia.’

Outlining the horror story I was hearing, the condition itself trains sufferers – though their loved ones seem to suffer the most – about how to misbehave in a biblical Hell.

It’s a state you wouldn’t wish on your worst enemy, though if you did, it would be more effective to wish it on the spouse.

It turns perfectly sane mortals into monsters. They shout, scream, defecate in the lounge, urinate anywhere, spit all over, and become precise opposites of their former natural selves,

When I just stare out into space, I am thinking about what I miss, about things that I used to do, about how things were before this disease came into our lives. I have said over and over, we patients do not need to be entertained...
How do you deal with someone you love and live with who suddenly, and seemingly without warning, turns into someone else, someone utterly self-centred, and well, crazy?

Turned into Hell

You can’t lead them to the RSPCA, the local pet pound, the cop shop, outpatients or anywhere.

You are stuck with them at home which, from what I was hearing, is turned rapidly into Hell.

Surprisingly there is another side to this horror show. This ‘other side’ is revealed by a sufferer himself, which might be the horror in ‘resting mode’.

These words from a dementia subject himself will have appeared during a dementia rest period, I expect.

Apparently, he’s one Rick Phelps who offered these edited words - edited because of the demands of space here - four years ago. He writes:

‘From a friend: I miss me. I wonder if some really know what this means? I tell everyone if you see your loved one just sitting there, sometimes for hours on end, don't panic.

‘They don't need to be disturbed.

‘When I just stare out into space, I am thinking about what I miss, about things that I used to do, about how things were before this disease came into our lives.

‘I have said over and over, we patients do not need to be entertained.

‘Nursing homes and facilities make millions out of making sure your loved one is entertained.

'Problem is they encourage activities for people who have lost the ability to be active.

'This disease takes much more than just your memories. I am in what I consider its mid-stages.

An effort to do anything

'For whatever reason, everything I do I have to make myself do. It's an effort to do anything. It is mentally straining to do anything.

'We don't just do things from memory any more. What we used to do without thinking about it, now takes us forever to do.

'Even the smallest things require us to use our brains.

'This is one of the stigmas that follow dementia patients around forever. Your loved one has to stay active. Not only physically but mentally.

'Here's one most important thing you will ever learn from a patient. We don't need to be active. Period.

'Some patients don't mind playing games or being entertained. But most - by far the most - do not.

'If we sit and stare, nothing is wrong - other than that we have dementia.

They are thinking

'The next time your loved one is just sitting there, doing nothing, know that they are indeed doing something. They are thinking. As well as they can, they are trying to remember who they are, who they were.

'What dementia has been taken from our brains, no amount of brain games is going to help.

'And that is the truth. Most of my best times include me just sitting there. Thinking I miss me

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