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Dementia - They Don't Tell You These Things...
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    1. #1
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      Default Dementia - They Don't Tell You These Things...

      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
      My "newspaper" https://paper.li/f-1299495251
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    2. #2
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      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,
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    3. #3
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      I would just like to point out this is an article and nothing to do with me.
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    4. #4
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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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      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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      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?

    7. #7

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      Experimental observations of behaviors associated with the visual cliff in infants and in animals shed light on how we might understand the experience of a demented person faced with an unexpected chasm where floor had been expected.

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      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.
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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.
      “You have power over your mind - not outside events. Realize this, and you will find strength.” Marcus Aurelius
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    10. #10
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      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

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