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Advice or help welcome.

canary

Registered User
Feb 25, 2014
14,934
0
South coast
she was adamant that my Mum wasn't showing signs of Dementia and she had seen lots of people who had/have dementia and she knew too many answers to her questions.
My OH can still ace the MMSE and yet he can no longer remember how to wash and dress and he has carers in to help him.
 

Taggert

Registered User
Jan 30, 2021
16
0
My OH can still ace the MMSE and yet he can no longer remember how to wash and dress and he has carers in to help him.
Really? How have you managed to get someone to believe you if you don't mind me asking?
 

canary

Registered User
Feb 25, 2014
14,934
0
South coast
Really? How have you managed to get someone to believe you if you don't mind me asking?
it took a long time for anyone to believe me and Im not sure that the GP does, even now.
OH got referred by a very roundabout route to the National Neurological Hospital in London and one of the consultants there believed me. We still dont yet have a diagnosis, but OH has all the symptoms of frontotemporal dementia and people with this type of dementia can ace the MMSE for a very long time, because their short-term memory is not the main problem.
 

silkiest

Registered User
Feb 9, 2017
268
0
Hi @Taggert , my MIL always has a very quick answer to everything and she always seems plausible but cannot remember the conversation topic within seconds of the end. Despite this it still takes some visitors several visits to realise how bad she is! We saw someone ring her door wanting money for a takeaway meal yesterday so OH rang her. Yes, a white, middle aged man had called and of course she had not asked him in. In reality it was a young asian man who she asked inside several times!!
People from adult social care do not usually diagnose dementia - the GP should be assessing her to see if there are any other possible causes for poor memory such as diabetes or hypothyroidism and then be referring her to memory clinic if all the routine bloods are normal and she has failed a basic memory screening test.
Our Admiral Nurse ( a specialist nurse who supports carers of people diagnosed with Dementia) says that the early stages are the hardest in some ways. MIL fought against any care we tried to put in place for a long time, now a few years down the line she lets carers in then sits down and just lets them get on with their job.
Even now if I need to do something for MIL that I know she will not like I feel sick beforehand, anticipating an argument
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi @Taggert , my MIL always has a very quick answer to everything and she always seems plausible but cannot remember the conversation topic within seconds of the end. Despite this it still takes some visitors several visits to realise how bad she is! We saw someone ring her door wanting money for a takeaway meal yesterday so OH rang her. Yes, a white, middle aged man had called and of course she had not asked him in. In reality it was a young asian man who she asked inside several times!!
People from adult social care do not usually diagnose dementia - the GP should be assessing her to see if there are any other possible causes for poor memory such as diabetes or hypothyroidism and then be referring her to memory clinic if all the routine bloods are normal and she has failed a basic memory screening test.
Our Admiral Nurse ( a specialist nurse who supports carers of people diagnosed with Dementia) says that the early stages are the hardest in some ways. MIL fought against any care we tried to put in place for a long time, now a few years down the line she lets carers in then sits down and just lets them get on with their job.
Even now if I need to do something for MIL that I know she will not like I feel sick beforehand, anticipating an argument
This sounds so like my Mother. She will not have help and just keeps going on and on about the same things all the time and l feel like the bad person because l can see what others can't and am fed up of them saying she is fine when l know that she isn't. But l guess until either she takes notice or someone else does nothing will change.
Maybe now my sister is taking a leading role for a change she will see what l see but l won't hold my breath because she will just sick her head in the sand and pretend everything is fine. I am stepping back for the moment and letting her get on with it for now.

I know just how you feel when you need to do something and feel sick because that is how l feel every time the phone rings and l think it is her calling to have another go at me for something l haven't done or said but she is adamant l am guilty of the crime in question and she is right so rather than argue with her l just ignore her calls for now. I am sure l will feel stronger soon to pick up her calls but for now l do not feel able to.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,356
0
High Peak
This stage is incredibly frustrating when they can turn on that 'hostess mode'. I recall countless arguments with my brother and later with various medics much along the same lines - me saying 'there are huge problems!' and others saying, 'she's absolutely fine'.

Stepping back is the best thing you can do right now. Be assured that 'time will tell' and sooner or later everyone will have seen what you've seen. The system of testing your lady from ASC is using seems flawed at the very least! It's also like she's taking your mother's word against yours too, with the implication you are making it up/exaggerating which is really not OK!

Hang in there and stick to your guns - you know you are right so don't let others make you doubt yourself.

P.S. I know only too well that instant 'sick' feeling when the phone rings. Even now, 15 months after my mother died (after 3 years in a CH and umpteen years where mum was struggling at home) I'm still only just getting over it.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,356
0
High Peak
Been there, done that, still wearing the T-shirt............
Yes! You're the person who came to mind @canary - I know you are the expert on banging your head against a brick wall! Most of us at least get a diagnosis eventually but you've had years of being told you're making it up/exaggerating/imagining it and even - if I recall correctly - that you were the problem! I admire your resilience and forbearance... (I would probably have hit somebody by now!)

I think you deserve the matching cardigan, trousers and hat at the very least :)
 

Sarasa

Volunteer Host
Apr 13, 2018
2,809
0
My mother was very similar, she did well in the mini memory test and would be very charming and funny with anyone who didn't see her often. I used to go over a couple of times a week to see her and email my brother afterwards with a report. These reports often included how vile mum had been to me. My brother obviously thought I was winding her up and suggested I 'just chill', a phrase that was guaranteed to rile me. He slightly changed his tune when she stayed with him for a few days and he could see how volatile she could be.
As for the phone calls. I dreaded my phone ringing. I had a landline with a very loud ring because I'm deaf and it made me jump every time it rang. Mum was the only person who called me and I never knew if I was going to get the charming and sweet if confused mum or the horrible one accusing me of all sorts.
In the end, after mum refused to go to the memory clinic because I had Alzheimer's and was making up stories about her, mum had a meltdown in the doctor's surgery. This led to a psychiatrist turning up on her doorstep unannounced, and he diagnosed probable vascular dementia. With vascular dementia it depends on what parts of the brain are affected, and with mum it seemed to be logic rather than memory that was the problem, hence doing fine at the tests.
In the end I moved mum into care as she was being a danger to herself.
Nearly two years on and things have moved on. Mum's memory is a problem now as is her mobility, but at least I know she is safe and well looked after.
I agree about taking a step back @Taggert. It sometimes takes a crisis, such as mum's meltdown in the surgery, for things to move forward.
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi sorry me again. I am so upset and don't know who to talk to. My OH just says forget it but l just can't.
Just had a wonderful call from my mother - not. She is still accusing us of taking her things when she was in hospital and we have even moved a photo from the spare room to her room and then have taken it whilst she was away. Not sure how she knows we moved it to her room before taking it. Anyway she is now going to give a list to the police of all the things she has lost (which we have taken) and she is also going to tell them the things she knows about my OH that she was told by people he used to work with (she named the place he worked at 30 odd years ago and most of the people he knew no longer work there, some have died and she never visited the place either). She also said she had heard it from people in a pub that he goes to all the time near where she lives (we don't live in the town and all the pubs are closed). I did ask if she was accusing me of stealing her things to which she said no but the police needed to be told and she was writing a list for them. I just hung up because l couldn't take any more.

I just want to cry and have said that l am blocking her number so she can't call me any more. Am l over reacting?
 

canary

Registered User
Feb 25, 2014
14,934
0
South coast
Im so sorry (((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
Its a very familiar story, Im afraid. She may not actually be capable of contacting the police and even if she did I dare say the police will realise that its all in her head, but its still upsetting.

Blocking her number is probably a good idea at the moment, although I would explain to your sister why you have done this.
 

Taggert

Registered User
Jan 30, 2021
16
0
Im so sorry (((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
Its a very familiar story, Im afraid. She may not actually be capable of contacting the police and even if she did I dare say the police will realise that its all in her head, but its still upsetting.

Blocking her number is probably a good idea at the moment, although I would explain to your sister why you have done this.
Hi thank you. I am not sure if she will or has actually called the police. Both myself and my Aunts have tried to speak to my sister. She ignores my messages and tells them everything is fine and she is taking care of mum now and says she doesn't know anything about why we have suddenly stopped calling or helping, even though we were the ones that only ever did anything as she would avoid helping at all costs. My aunts keep asking my mum if she has heard from us and her reply is "No, l don't know why they aren't calling round". One of them even spoke to her yesterday and again she was adamant everything was fine and she hadn't heard from us. No mention of the police or any of the other horrible things she said to me. I know it is hard and it is the illness but she must know some of what she is saying if she can tell stories to other people and remember what she has said because she tells both her sisters the same thing and l just can't understand how she remembers it all. I have told them that l have blocked her number for the time being and they have said they fully understand and will let me know if anything happens. My sister has stepped straight into my shoes and is finally helping out.
 

canary

Registered User
Feb 25, 2014
14,934
0
South coast
Delusions can be very persistent.
At least your aunts understand the situation and think you are doing the right thing. It is nice to have support from family.
xx
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi it has been a few weeks since l last posted and l hadn't heard from my Mum until yesterday when l had a message via my sister asking me to call my Mum asap. So after hours of feeling anxious and sick l finally picked the phone up and called her. I tried to be calm and controlled and not let her get to me but she did big time. The conversation went like this:-
Me - Hi Mum you wanted me to call.
Her - Yes - I have been to see my solicitor and he has advised me that it would be better if we no longer had contact. If that is alright with you?
M - Yes l guess if that is what you want. I just don't understand what it is they we did.
H - I don't think we should discuss that any more do you. Best we leave it now.
M - Right (then l hung up l was so upset)

A few minutes later she called back and l didn't pick the first call up as l was trying really hard not to cry. She called again and as l have blocked her number she had to say who was calling and would you believe she said my Sister's name as if l didn't recognise her number or voice.

Is this common or is my Mother just being vile. I think it best that l stop all contact from her as she wishes and try and get on with my life as best l can now that she wants me out of her life after everything l have done for her. I am just tired of being used as her punchbag and need to let go before it makes me more ill than l already am from the stress of her.
 

canary

Registered User
Feb 25, 2014
14,934
0
South coast
Im so sorry that it has come to this.
I have a suspicion that your mum no longer knows why she wants you to not have any contact. I think possibly she just has this feeling that Things Are Not Right and doesnt know why, because she doesnt realise that the problem is actually her.

I think stepping back at the moment is a good idea. If you break this cycle your mum may forget that she doesnt want to talk to you.
 

CarolandVic

Registered User
May 1, 2020
34
0
Hi thank you all for your replies. I am finding this really hard at the moment and wonder how you all get through the early days? It seems that we are just phoned now to be accused of something or to have an argument which l refuse to get drawn into. Last night was yet another of those calls. I tried to make a joke of a few things that were said but once things which were untrue we said about my OH l knew it was time to hang up. As l have said before my OH has gone above and beyond for my parents but now they just seem to have it in for him and are trying to turn us against each other at the same time saying they know things about him and l will find out soon what they are but they won't tell me. I know it is all rubbish but it hurts just the same. She just seems to be trying to hurt me/us for some reason which l don't understand as all we have ever done is try to help them.

What can l do to get through this because l don't think l can take much more of it?
I know how you are feeling. It takes time to come to terms with the reality of dementia. I have had to accept that I have lost my Mum. She absolutely believes that I have killed her dog and put her in a home so that I can sleep with her neighbour. I am 73 and hardly know her neighbour. She is also trying to get hold of my brother who she hasn't spoken to for 20 years as he will get her home. He's always been golden and I've never been any good. You are not on your own. It hurts deeply even though we know it's the illness. Take care and good luck.
 

silkiest

Registered User
Feb 9, 2017
268
0
Hi @Taggert, I know exactly how you feel. It's easy to say it's the condition but no matter what the head says, our hearts say different. When MIL was at her most vocal I remember the Admiral Nurse saying these early days can sometimes be the hardest as the PWD is trying really hard to maintain their independence, knows that something is wrong but cannot really remember what. I've been in tears myself this month as mum who now also has dementia shouted and swore down the phone, accusing me of things she had done herself. After less than a week of staying away it was suddenly me who had done the falling out and she was in floods of tears that I had "made up with her" when I visited extremely reluctantly at my dads request. What a roller coaster ride this illness is. My heart goes out to everyone dealing with this dreadful illness
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi @Taggert, I know exactly how you feel. It's easy to say it's the condition but no matter what the head says, our hearts say different. When MIL was at her most vocal I remember the Admiral Nurse saying these early days can sometimes be the hardest as the PWD is trying really hard to maintain their independence, knows that something is wrong but cannot really remember what. I've been in tears myself this month as mum who now also has dementia shouted and swore down the phone, accusing me of things she had done herself. After less than a week of staying away it was suddenly me who had done the falling out and she was in floods of tears that I had "made up with her" when I visited extremely reluctantly at my dads request. What a roller coaster ride this illness is. My heart goes out to everyone dealing with this dreadful illness
Thank you for your reply. My Mum has always been a very difficult person and has always played us against the other. So much so that her oldest daughter my half-sister moved to the other side of the world nearly 40 years ago to get away from her and has had very little contact and has not spoken to her for almost 15 years now. She stopped speaking to my her son (my half-brother) last year but as he has always been her golden child he manages to worm his way back in and is now apparently back in the fold. I am sorry l don't mean to sound mean or jealous because really l am not. All my life l have felt that l was in the wrong family and one day my real parents would come and get me but it turns out they are my real family because my Dad really was my Dad. It may sound mad but l really thing they are all playing some sort of sick game and haven't told me the rules or they make them up as they go along so that l always lose.
I don't think anything will change because l haven't seen her since the end of Jan and only spoken to her a few times and each time she has been really viscous as if she was waiting ready for my call even though she didn't know when or if l would call. So l think it is best that l just walk away and leave her with her favourite children who no matter how much they have hurt her over the years are still and always will be her golden children. This illness has just brought out more of her nastiness so they are welcome to her. I need to get on with what is left of my life without trying to fit in to hers. I have wasted too much time on hoping for something that l will never have. I wish l was the child she had adopted because they were the lucky one.
 

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