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My sister "MAY" have dementia - very confused husband - Carers UK Forum

My sister "MAY" have dementia - very confused husband

For issues specific to caring for someone with dementia.
Hello all.

My sister, a nurse of over 40 years, and once a SRN – who has just turned 64, “MAY” have dementia.

My sister who visited/visits me about 5-10 times a year with her husband, my brother-in-law, has been very absent minded this past two years, so I was told – though I did suspect something. It’s a long story really but to cut it shorter, me - and my other siblings have sensed that my sister has been absent minded for a couple of years – or so, BUT my brother-in-law said, in effect, that “there’s nothing wrong with her”, she ok, and just a “bad phase” she’s going through.

So, after my brother-in-law tried to convince us there was nothing wrong, he went to my other sisters house last night and told them that his wife (my sister of course) may have dementia (It’s been said for quite some time that my brother-in-law may have been living in denial etc).

So last night, my brother-in-law told the rest of my family that he thinks she has Demetria. My sister was very quiet - and unable to communicate "properly" during the visit from my Brother-In-Law. So it’s been a while; 2 years plus I’d say, that it’s finally come out in the open. With my sister present, my Brother-in-law said “we’ll have to take her to a hospital” (for some tests) etc - which brought extreme panic to my sister, and she exclaimed “I’m not going to hospital” (several times).

So what I want to know is– WHERE do we start to get help? My mother had Alzheimer’s disease/dementia from aged 69-78 (2000-2011) and I cared for her at my home for about 5 years, before my mum had to be taken in to a care home ( I also cared for my mentally handicapped brother for 12 years soon after). I’m not sure what advice to tell my Brother-in-law as to where to start, but I would assume a specialist doctor, or perhaps a social worker to get the ball rolling for help my sister may need? I can’t quite remember my mums first visits/contacts etc – so I would like you help me on this matter please.

It pains me that this should have been out in the open longer ago, and sought “treatment” for whatever Illness my sister may have (there’s nothing confirmed yet though, as she not been anywhere yet – and I’m only taking my brother-in-law’s words at face value, that she “may” have Dementia).


Kind regards


Tony
Hi Tony,

I am not an expert on this and I am sure others will be along to advise you, but it's often said here that the Alzheimers Society has a useful forum and it deals with all forms of dementia, not just Alzheimers:
https://www.alzheimers.org.uk

I believe it's a slow and confusing process actually establishing that a person has dementia. I recall both my brothers probably had the beginnings of it and passed simple tests like counting down from 99 in threes put to them by the GP, and later than that one of them had a brain scan, but he died before we got the results. So that's not very helpful!

I should think your brother-in-law could start with the GP. It is probably a good idea not to say things that panic your sister. I read a book by Wendy Mitchell, who has early dementia, called Somebody I Used to Know, explaining the dementia patient's experience of the process, that she often felt written off by other people while she was actually 'still there'.
Hello and welcome to the forum
My lovely now late husband had vascular dementia along with other issues. When concerned ( and admittedly very scared) I wrote to hubby's GP with all that was happening.
Without going into loads of detail, the words " MAY have dementia" are more worrying than actually finding out for certain. Or possibly it could be another reason. Certain vitamin deficiencies can mimic dementia, as can uti.
So I suggest someone contacts the Doctor and get the ball rolling. The doctor wont be able to discuss because of confidentiality reasons, but at least will be aware, and probably will ask to see your sister.
Very difficult time, and it wont be easy.
Thank you pet66 and Greta. Much appreciated, and I’m glad you mentioned the GP as that, I believe, will be a good starting point. Just an aside, my Brother-in-law is “ok” with me, but doesn’t socialise with me, or speak/text etc, so i have to work through other channels like my younger sister to get words’ across. (I have 2 brothers and two sisters)

Greta, if some of the test are like counting back from 99 to zero in 3’s then I’m afraid that would not be possible for her (its quite hard Actually!). I asked my sister to take a cognitive test (similar to that of Donald trump) https://twentytwowords.com/take-the-cog ... ical-exam/

She was able to pick the animals out (bless her) but didn’t have a clue what the test was, what it was about, nothing. There’s a worry sometimes having these tests that you feel somewhat intimidated ? And so too her husband who has to be put through it. I had this with my mum, in which a nurse/carer (not sure) took my mum in another room in my our house and shown her pictures (Like simple popular figures like - the “queen of England ”/Margaret thatcher, Winston Churchill etc.

Thanks anyway, and ill tell my younger sister that we are t recommend the GP - first.


Kind regards and thanks for the link to Greta.

Tony.
Love the Donald Trump link!

My second brother, who actually was a bit confused (delirium after hospital stay) but didn't have dementia, would count down from 99 at the speed of light just to prove how clever he was. He did make a couple of mistakes at the end, down to speed rather than inability to do arithmetic. It was very funny. My first brother may well have had the beginnings of dementia but he did quite well on the test too.

I remember reading that according to research, Margaret Thatcher was the best-remembered prime minister in these kind of tests.
Sadly the tests give aren't the complete answer. My husband, counted down in 7s amazingly, better than I could, then said the year was 1980. It was 2015. Sometimes there is humour, ( needs to be). Need humour in life don't we!
Hi Tony,

Sorry to hear about your sister. Yes, the GP is the best starting point. If the GP refuses to deal with any relatives because of patient confidentiality, (This happened to me with my mum), they may be prepared to read a letter from you.

Brain scans can detect vascular dementia. The memory tests are notoriously unreliable. My mum would not have been able to spell or count down long before the dementia!

When she was asked the name of the Prime Minister, she said that she was certainly not going to say his name, it would make her too angry!

Good luck, it is not an easy road ahead,
Anne
Thanks all the replies.

Yes, this number thing can be confusing in respect to dementia, as my mother could remember a 16 figure catalogue number (used to run a catalogue club) but - like Your husband, wouldn’t (Literally) know what day it was . My sister has the same problem regarding days. My brother in law said to my sister, in front of everyone the other day “what day is it, ? What time is it?” Etc. In my opinion it can put more mental stress on people with suspected dementia and can make them angry - which she was - especially if its not a care professional doing it i must emphasise. ;)

Let me just say that the very first signs of my mam’s dementia was moving wardrobes about 2-3 times a week (this was about year 2000-2001). I didn’t suspect anything much At this time, but things got worse when my mum kept walking around the house, aimlessly- going to the toilet 30 plus times a day, and in some instances, would put on her shoes, coat and scarf, and lipstick at 11 pm at night (bedtime) and say, “lets go home then” (we was already home of course). Then it went on...... :(

Back to this “number thing”. Well, remembering FACES/photos are far better a test (in my opinion) than numbers, or at least knowing the obvious (obvious to us that is) which should be obvious (the pictures) for someone tested for dementia - lets face it, if they don't have dementia - they should know, right??? If you show someone a picture of the queen for example and they don’t know, then you have a problem i think. If they know who the queen is , then you can start going on this “downward hierarchy” trend - easiest to hardest.


For example. The Queen. Prince Charles. Prince George. Princess Charlotte, Then if they pass this “test” - you could go for, say, lesser know figures.

My sister, for example would know who Shirley ballas (strictly dancing) is and Alisha Dickson, (mind the spelling!) but....I’m not sure she’d know them now, so picking the obvious, like the queen is fine, as long as they know, but you have to test them on WHAT THEY ONCE KNEW in my opinion. For example, i have hearing aids, and had subtitles on the TV when my sister and brother in law visited me earlier this year, and she said, “””you've got hearing aids but still need that thing on the screen””” she was unable to say the word subtitles. All these little subtleties - as unimportant as they may seem, were picked up by me, at least.

Thanks all Tony.
They need to do scans alongside the standard questioning.. it is subjective because in theory I could go do the questions tomorrow and fail because I'm not into pop culture, my first off hand answer to the PM question would be an [explicative]. probably adding that the only person that went into that building with honest intentions was Guy Fawkes, I don't care for the royals, can't stand most music beyond 80's (should had been born in the 60's or 70's :P )

On the flip side, I've memorised my bank cards (all sets of numbers, pins, expiry), my NI number (and carees), council tax number, most of the utility bill account numbers, 100 odd telephone numbers, and so on.. without really trying, its just repetition. And then you have the textbook stuff, like being able to sit in meetings quoting chunks of framework at social workers or CHC assessors (or DWP employees).. you can actually almost sense the utter hate they have for the likes of me, and honestly it brightens my day a little :)

As I said, subjective

Memory clinic referral first, establish whats what

If its a form of dementia, you want the community dementia team (they are everywhere) to send somebody to visit who will get the ball rolling on what to do next. You never know, optimistically even if it is the big D, there are medications to slow/stall the effects depending on the severity and time of Dx.

Figure out what is going on, you need to know who the fight is with before you can really begin to plan things

Best wishes
I'm 67, can still remember the registration number of my headmaster's car! I know late husband's NI number, my own, and one son's but my memory for names especially when given verbally at a party or similar is terrible. Written down several times is different. I can still remember all three Christian names of people I met at work in 1972!