Dementia - They Don't Tell You These Things...

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firemonkee57

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#1
My mother has had Lewy Body dementia for the past three years. I recently read an article in a newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to 'see past' the disease, as the person you love is 'still in there somewhere'.

It said you have to be patient, keep calm, and try to inhabit the 'dementia world', wherever that is. It may as well have recommended buying a unicorn and riding it there.

I'm not going to pretend I have answers, because I haven't. I've stumbled through the last three years with absolutely no idea if I'm doing the right thing or not.

What that article failed to offer, like most of the others I've read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don't tell you about the reality of what it's like to live with this appalling disease.

They don't tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don't tell you what sort of nappies to buy when she becomes incontinent; let alone how you're supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don't tell you how to persuade her to take her medication when she's screaming that she's going to call the police because you're clearly a member of the Gestapo who's trying to poison her.

Dementia - They Don't Tell You These Things... | Dawn Vance
 
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AmisulprideJunkie

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#2
My father in law died a few months after his diagnosis, having had a fall. When he knew he had dementia he was terribly depressed and admitted feeling suicidal as he feared the future. Even in the period between early symptoms and his recent death, he was deteriorating rapidly. A highly intelligent man, he couldn't remember things, confused his words, didn't want to take medication and easily lost his temper and punched out (thankfully only at furniture). The future looked pretty bleak.

I have also worked as a Care Assistant (not a nurse) with people who had dementia. I've had to dodge punches and the things you describe, I have witnessed. However, I could clock off and go home to recover from the stress. A carer does not have this luxury. I take my hat off to you and send you a big hug

Can you get any help with care to allow you a break? Have you approached Age UK for advice? What about Social Services, GP, or the Consultant team who are managing your mother's case?

Please try to get someone to step in to give you a break and allow you some ME time.

Lots of hugs and warm wishes, :hug1:
 
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firemonkee57

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#3
I would just like to point out this is an article and nothing to do with me.
 
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Katss

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Am dreading it me getting dementia or someone I know because I spent an afternoon with a great aunty of mine who was diagnosed with dementia and I wanted to run away or chop off my head after 20 minutes? It was really really a nightmare Like being with a adhd alien sorry if that's harsh but true also if you have MH DIFFICULIES how are you supposed to care for another adult with complex needs?
 
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ramboghettouk

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#5
about sums up me visiting mother in brum, her psychiatrist saw her today, as i said to her your royalty if you have a psychiatrist, cryed when i was meditating could be cold or some emotion the meds are stopping me feeling
 
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flowerpot

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Where will I get the strength from to help my husband who has the onset of dementia? Feeling hellish myself, not sleeping, anxious. Can't think, is there anyone with any helpful info. My mh poor and just feel our lives might as well be over.
Done doctors, cpn but not much good. Family too busy with their own lives. We might spoil things after years of support from us. We not much fun so can't say I blame them.
Wonder who worried us sick all these years till we worn down.

We've let things get to us so perhaps it's our own fault.

Feeling very low you've probably guessed, why bother?
 
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Savenn01

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#7
Dementia is often incorrectly referred to as "senility" or "senile dementia," which reflects the formerly widespread but incorrect belief that serious mental decline is a normal part of aging.
 
calypso

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Absolutely! I spent 10 years as a sister in charge of 3 units for people living with dementia and fighting these stigmatising comments was non stop. The youngest I nursed, by the way, was 52. It can happen at any age, but is more common in the elderly. We fought that it should be seen as a neurological illness and so be paid for by the NHS, like any other neuro illness. Didn't work of course, the government say all the right things, but won't pay.
 
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ramboghettouk

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#9
dementia praecox used to be an old name for schitzoprenia, remember that diagnosis of hebephrenic schitzoprenia negative symptoms predominating, when i looked up hebephrenia in a dictionary it said an inevitable deteriation into complete insanity, "he also giggles for no apparent reason" i laughed at a fat psychiatrist
 
calypso

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I think that was in the past and not how we use the word dementia now. Its an organic illness which often causes psychotic symptoms due to brain changes, unlike anything proven in schizophrenia. Its a confusion in terms. Remember, they used to use words like moron, idiot, lunatic, in the old days for various MH difficulties and lumped in people with learning difficulties too.
 
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ramboghettouk

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#11
I think that was in the past and not how we use the word dementia now. Its an organic illness which often causes psychotic symptoms due to brain changes, unlike anything proven in schizophrenia. Its a confusion in terms. Remember, they used to use words like moron, idiot, lunatic, in the old days for various MH difficulties and lumped in people with learning difficulties too.
you knew where you stood with the old words would ian duncan smith be saying morons idiots and lunatics could work
 
calypso

calypso

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#12
Rambo - this is about organic dementia - not all you are talking about. Please don't think its the same thing as the MH labels, its not.
 
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ramboghettouk

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#13
Rambo - this is about organic dementia - not all you are talking about. Please don't think its the same thing as the MH labels, its not.
schitzoprenia used to be considered organic a lot of psychiatrists consider it that way too this day, and you were mentioning the stigmatising side of the old words i just pointed out that with the old language it'd be harder to justify the welfare reforms
 
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ettiene.dyer

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We toss around these words such as "dementia" as a way to rationalize the irrational. Funny thing is that the very word "dementia" when translated from the originating Latin, means "irrational or mad". So we are already doubly fucking ourselves if we try to rationalize the irrational. I don't write this to diminish those who have experiences trying to prove the irrational or rational, but to clarify what is going on. The very term "irrational" means that which is not rational. It is a sate of being that is not resolvable with rational reasoning. Probably because that was over utilized and the the only resort left was madnesses.

Imagine, if you will, you live in a world of color blind people, that can on see in black and white and you saw more of the spectrum, maybe you saw a family picture where everyone in it was a stranger. Maybe you forgot everyone to such detail and with such abandon, that you became an inhabitant in womb again. Imagine that process.

Imagine one day your husband, who liked his carrots diced and asked you to do so, came back to overlook your work and found they were left whole and he yelled at you because you didn't follow his very orderly command. Imagine your semi schizophrenic son watched this ordeal of his mother, whom had carried his body from egg to birth... in her body for nine months, suffering every growth spurt, kick, and mourning sickness away from the free girl she once was. Maybe that schizophrenic son whom your worst fear is that he would loose control now, would take the time to make whole your waxed carrot at every opportunity he had.

Old age is funny situation if you look at it. We experience it in stages and starts. At this point in my life I forget somethings and remember others. I hope to one day forget everything, and express the love my mother has up to this point towards me, in this very frightening ordeal called "her dementia".

By the way there has been lots of scary moments for me too. It seems there will be a lot more scary moments in the future. But for right now, lets not freak out if our carrots are diced or left whole. Lets not freak out if while we think we are whole, we don't remember and respect those that bore so much.