Mum with Dementia symptoms but Doctors won’t diagnose

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Hi. Mum is 88 & has Congestive Heart failure.

She had a bladder infection 6 months ago, with delirium & never returned to her normal self.

She displays odd behaviour, trying to

use any chair or surface as a commode, eating relentlessly, trying to eat unedible items ( dog hair, my arm, her clothes) shows no emotions or anxieties. Prior to this she suffered depression & severe anxiety disorder. She is now super calm & relaxed but very confused. Shes now unable to dress herself & has no interest in personal hygiene.

The hospital doctors did some Dementia screening consisting of various questions. They said she answered them correctly & therefore say they cant diagnose Dementia.

I would very much like to hear from anyone that can offer their thoughts on this.

Many thanks

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  • Posted

    I feel desperately sorry for you, though I can't offer much practical advice.

    I had a very similar experience with my mother in the UK. (I'm assuming you are in the UK by your use of the word "mum" instead of "mom", and also this smacks very much of NHS procedure.)

    My mother's case was complicated by the fact that although I'm an only child, I was living 200 miles away from her, which made it very difficult for me to work during the final four-year period where I was constantly shuttling back and forth. My mother's dementia was probably not quite as bad as yours, but personal hygiene was a perpetual problem, as was finding the toilet in her house. Personal hygiene is nearly always the first casualty in dementia. Unlike your mother, she ate very little, often because she was consumed with anxiety that food had gone off and would throw away any fresh food I put in the fridge and the freezer the moment I left the house. Like your mother, she had suffered severe, albeit undiagnosed, general anxiety all her life, so this is clearly another factor.

    My mother was able to present as perfectly normal in front of her GP, which meant I had to fight for nine years to even get her referred to a gerontologist and get a CT scan. (This another common problem for carers of dementia sufferers.) The gerontologist was very sympathetic. She said that my mother's brain scan showed multiple areas of ischaemic damage - i.e. damage caused by interrupted blood supply, probably due to repeated TIAs or mini-strokes - which was a strong indication of vascular dementia. However, since my mother - like yours - was able to pass some of the tests with flying colours, the specialist said she wasn't allowed to diagnose dementia. My mother failed totally on all the memory tests, had no idea what year or even season it was (she suggested 1979 when it was in fact 2006) but as she'd always been very intelligent she had no problems with the maths and verbal tests or drawing a clock. Another doctor, at the hospital where my mother died six months later, was very angry about the mental state test operated by the NHS. He said the scoring was heavily weighted in favour of intellectual performance vs. memory and practical skills, as a ploy to save money. As he put it: "What use is it that they can do b....y crosswords if they don't know where the toilet is or whether they've had their dinner?"

    You don't say whether your mother had a brain scan at the hospital. If she didn't, I think you should try and push for this, though - as mentioned above - they're likely to favour her test performance over her scan results when it comes to making a diagnosis. I think it's very much a question of postcode lottery in the UK, as I've heard of dementia sufferers in other regions getting much more help.

    You should also contact the Alzheimer's Association. It doesn't matter whether your mother's dementia is due to Alzheimer's disease or not - they can offer support and advice on all kinds of dementia. You can find them on line. I was also able to get an excellent home help via Age UK, though we went through several before I found one who was prepared to cope with my mother's tendency to hide faeces in unexpected places. (This involved paying her considerably more than the official rate of course.) You can self-refer to Age UK, or at least you could in Surrey in 2004-2006, so this didn't require a doctor's order.

    I'm afraid you're in for an exhausting time. I can only urge you to look after yourself as much as you can during this long, sad period.

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    • Posted

      Hi there & thanks so much for your detailed reply. I admire you for having travelled all that way to & fro. It's bad enough just dealing with the emotional pull.

      I've been looking after mum for as long as I can remember. She was diagnosed with a personality disorder, severe anxiety disorder & depression many years ago. 2 years ago I gave in & gave up my full time job to look after mum & claimed the allowances plus took an evening job instead. Luckily my husband was very supportive. My 2 daughters also pitch in too. Social Services are happy to leave her in the family's care. I did work in care for a few years & specialised in Dementia so was able to spot the changes, for which doctors never seemed interested.

      I wondered if it was a budget issue, & your comments re your mum's doctor has helped me see this must be the case.

      On one of the wards mum was on I quietly listened to a changeover meeting the doctors were having in the corner. It was a frailty ward & they were primarily focused on getting them out as quick as possible, like they were running a business. I'm not judging, just repeating what I heard, but I did find it sad & angry that they were under this sort of pressure & how it affects peoples lives.

      I don't know if I need to push for a diagnosis as we have her care under control plus I'm employing extra private care. I did ask if she was being denied meds to help her symptoms without a diagnosis. Nurse told me the doctors said her symptoms didn't warrant a med used for Dementia.

      she is on a lot of cardiac medication. I can see that the two go hand in hand & it must be vascular dementia, along with what you've told me about your experience.

      Just wondering if I should push for a diagnosis if there are meds that can help her.

      Thank you so much for the information & taking the time to respond.

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  • Posted

    my future mother in law was having hallucinations, thought she couldn't eat or drink or go to the bathroom because she was being punished by a person (living still) who took over her body and would punish her by not letting her do these things. had to press her lips to her computer screen and basically kiss the pic of this woman to be able to breathe. she had 7 or 8 visits to the E.R. where each time they prescribed her a med but she didn't know to fill the script. friends just thought she was sick and didn't realize she was having anxiety of being alone which made her think she couldn't breathe etc. family lived 6 hours away and couldn't tell these things until she divulged the person taking over her body! we brought her to live with us and her symptoms I saw were she couldn't shower herself, or dress herself, wouldn't eat thinking she couldn't eat, couldn't walk without help or a walker, hadn't taken her meds in about a month when living alone, was having hallucinations and crying spells for no reason, said God wouldn't forgive her, and God would not let her use the bathroom. Her kidney Dr. prescribed Mirtazapine which helped with the anxiety and the side affect gave her an appetite so she would eat! No more hallucinations and she is eating! the her GP when told about the hallucinations and inability to care fore her personal hygiene etc prescribed Donepezil. OMG! she is back!!!!! She wants to drive, shower, use the bathroom, pay her bills, get her own apartment! (no!) She wants to do everything on her own but cook and check her own glucose! She can't remember how to use the little machine. this medicine is amazing! Especially together with the Mirtazapine! I am only curious how long this will last until it starts not working as well and we may have to update to a higher dose of either! HIGHLY RECOMMEND BOTH FOR HOW THEY ARE WORKING FOR HER FOR THESE ISSUES!!!!!

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