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Really worried and Mum turning against me

worriedson77

Registered User
Jan 29, 2020
53
Just Updating the thread really as I find it quite beneficial in getting my thoughts down. Mum is telling everyone and anyone that she is fine now and that the dr has given her a clean bill of health. On a positive she remembers going to the drs but unfortunately her recollection of the visit is beyond skewed (Its her 3rd visit and she has latched onto the most recent one which she booked in fury after the opg letter incident) but was accompanied by trusted neighbour. Dr was clear with her that she has an issue and memory clinic will diagnose this for her but she feels that he said she is better definitely not suffering from any memory issues and would not let anything happen to her. It's hard biting tongue or just simply agreeing but that is what I have been doing and she has been fine with me, however have just found out she has commandeered another neighbour to try and cancel the Lpa applications ( They didnt as they could see she was completely out of sorts) so leaving her unattended with this altered reality is putting her in danger of the opposite of what she is trying to achieve in her specific wishes being carried out. I am also finding that the anecdotes that are repeated each time are taking longer and being carried out back to back, for example the other day after spending time with her and the kids she repeated every story again sat in the car outside of her house for at least an hour and a half as I was dropping her home. Keeping her calm and being calm lead to a more peaceful existence but she is also in denial, I know memory clinic have booked an appointment (As I did it over the phone) and written to her but she has seemingly lost/hidden the letter which I know a diagnosis wrong necessarily be remembered by her but will open up support opportunities and even financial ones to best help her. She moaned to me that trusted neighbour 1 was trying to coerce her into suffering from AD but this limbo bit is very hard and has made me I'll! Rant/update over
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,755
Nottinghamshire
Perhaps if trusted neighbour told your mum the LPA had been cancelled your mum would feel safer. It’s all about keeping trust at this stage and the truth, as you’ve found, isn’t always helpful.
 

worriedson77

Registered User
Jan 29, 2020
53
Perhaps if trusted neighbour told your mum the LPA had been cancelled your mum would feel safer. It’s all about keeping trust at this stage and the truth, as you’ve found, isn’t always helpful.
@Bunpoots so appreciate your advice, you gifted me a lightbulb moment really as exactly right in what you say and think I've perhaps been missing the woods for the trees!
 

canary

Registered User
Feb 25, 2014
13,370
South coast
Your mum is frightened.
She realises that everything around her is changing, but she no longer has the insight to understand that it is she herself that is changing, so she thinks that it is everyone else. Her recollection is skewed because she cannot remember fully what happened and her subconscious brain is filling in the gaps with false memories (confabulations). To her these false memories are indistinguishable from the real thing, so she truly believes that the doctor has given her a clean bill of health. You wont be able to argue with her because she thinks that she remembers the events, so if you are claiming things were different then it proves that you are not trustworthy, or are trying to trick her. In her mind she is saying - they cant fool me, I remember what happened!

What you have to do is appear to go along with what she says, so that any explanation is because she is right. eg - tell her that her doctor says the memory clinic appointment is to prove that she is OK. By telling her this you are not challenging her false memories, but you are giving her a reason to attend. As @Bunpoots suggests, tell her that the LPAs have been cancelled, without actually doing so. It feels terrible to have to do this, but it is a recognised technique. You cant bring them back into reality, so you have to enter their world in order to keep them safe.
 

Pete1

Registered User
Jul 16, 2019
866
tell her that her doctor says the memory clinic appointment is to prove that she is OK
Hi @worriedson77, I think @canary advice seems spot on. It is just so difficult when you are in the eye of the storm. As you rightly say the diagnosis is to open doors to support Mum and that is really the prize - once you have the diagnosis there is no need to mention it to Mum again. At first I used to go over it time and time again whenever she asked why she was feeling as she did, but of course that's pointless, all that is really required is reassurance and safety, so I just used to say she got in a bit of a pickle now and again but it was nothing to worry about as she was being well looked after. All the best - none of this is easy in practice, even if it looks simple on paper. Stay strong.
 

worriedson77

Registered User
Jan 29, 2020
53
Thanks @Pete1 and @canary, it's really good to get your input, it certainly can take its toll. It's probably because it's still a challenge to realise that it's "good" when mum feels fine but that's based on her constructed reality so each conversation now is a mix of living in the moment, walking on egg shells and listening/analysing to what is being said so it's like triple the effort and is tiring, especially when in a lucid moment you get asked "so do you think I have alzheimer's/dementia?" which caught me out the other day ("I dont know but if you have I have" was my response which was the wrong answer apparently). I suppose overthinking is a speciality of mine and I do it a lot about tiny instances, certainly thinking bigger picture and end goal will help and i think trying to prove anyone saying she has memory issues wrong is a good tactic based on mums stubbornness!
 

Pete1

Registered User
Jul 16, 2019
866
I suppose overthinking is a speciality of mine and I do it a lot about tiny instances,
Hi @worriedson77, I think that is pretty normal, as is the what happens next scenarios. I would say from experience try not to think too much about the future and appreciate the here and now, even if it feels really difficult. I know its really easy to say with the benefit of hindsight and much more difficult when you are living it. Just do your best for Mum and perhaps accept it will never be a perfect world, when you accept the chaos its much easier. All the best. Stay strong.
 

worriedson77

Registered User
Jan 29, 2020
53
A brief update as thought would follow up, after employing the tactics advised managed to have a really long positive get together, could see Mum lining up/getting towards agitation and seemingly look for an argument but each time I made sure that i used the fantastic tips from here, was bobbing and weaving like Muhammad Ali and just wanted to give thanks for the tips firstly. Also as a slight comedy addendum, because mum couldn't take her frustrations out on me she turned a bit on her trusted neighbour in our conversation being quite critical of them, thought I had calmed her down as was really cheery as I left but who did I see arrive at the door as I pulled away!? Got a text from them just now saying that they had received an absolute ear bashing which caught them by surprise as all they were doing was popping in the milk mum had sent them to get for her (I had tried to give advance warning but they hadn't checked their phone). The tips worked for me but it seems that if mums in the mood for combat then woe betide whoever is next in line!
 

canary

Registered User
Feb 25, 2014
13,370
South coast
Im sorry the neihbours got an ear bashing, but sometimes I think its good that someone else sees what we see (and hear). At least that way the neighbours wont be tempted so much to wonder if your mum really is right about what she says ;)
 

Sarasa

Registered User
Apr 13, 2018
1,671
@worriedson77, the poor neighbour. Although mum's focus for everything that was wrong was mainly her neighbours, none of us were immune. I once made a total muddle of her grocery delivery (long story). Mum was convinced it was all my brother's fault and kept on phoning me up to get him to come and collect said groceries. I kept on saying it was all my fault, that my brother had been no where near her flat, and that I'd sort it, to no avail.
I hope you manage to keep the neighbours on side. Mum's were mostly sympathetic, even the ones that had to put up with some really horrid abuse were pretty understanding. The downstairs neighbour was a right pain about mum's outbursts though, even though I explained she had dementia and I was working towards a solution.
This site is so brilliant for support, glad you found some useful tips.
 

Pete1

Registered User
Jul 16, 2019
866
look for an argument but each time I made sure that i used the fantastic tips from here, was bobbing and weaving like Muhammad Ali
Hi @worriedson77, very good analogy 😀 What a shame about her caring neighbours, hopefully they understand it's nothing personal and continue to lend their support. How are you feeling now?
 

worriedson77

Registered User
Jan 29, 2020
53
Hi @worriedson77, very good analogy 😀 What a shame about her caring neighbours, hopefully they understand it's nothing personal and continue to lend their support. How are you feeling now?
Hi @Pete1 feel ok but of course the new ok is sort of accepting the day to day ups and downs and developing that thick skin you recommended to me in my early posts! My mums neighbour has been round again, they work in the field so are much more effective and used to even more aggressive behaviour, said this time mum was pretty sad but grateful for our support. Memory clinic is friday and think it was this letter that set her off this weekend because she doesnt remember that the appointment emanated from her visiting the dr and them referring so bridges back to everyone making up that she has an issue. She seems frightened and it must be so confusing because she doesnt recognise herself as having forgotten anything yet all of these letters and things keep happening yet she hears everyone is telling her she is fine. I do think as well that because neighbour is checking daily that she is doing things like eating or has plenty of milk for tea and that shes taking her medication she probably does feel physically better than before we knew the extent or existence of there being a problem at all as there was lots of evidence that she wasnt doing any of those things. Thanks for the support, I do find that on this forum i am able to answer a bit more honestly when asked how i feel and sometimes in person the default "I'm fine thanks how are you" trips off the tongue too easily!
 

Pete1

Registered User
Jul 16, 2019
866
the default "I'm fine thanks how are you" trips off the tongue too easily!
Yes I know @worriedson77, I think that is always the default position to those that ask, even when you are your wits end! I'm not surprised about the anxiety over the memory clinic for your Mum, I think that is perfectly normal (I'm assuming this is the first visit for diagnosis)- if she says nothing is wrong, you can use the tried and tested line - that's what we will show the Doctor after you have been. My Mum hadn't forgotten about the assessment on the drive home. They tend to go through a number of questions that are a bit more in depth than the original 'memory' test applied by the GP. Your Mum should get a formal follow up letter detailing the outcome, although they did explain at the time the scores etc., which may be worth knowing if Mum is likely to be upset (my Mum wasn't particularly bothered). Have you also got to take Mum for a scan ( or have you already had it) ? That was what we had before we got the formal diagnosis.

Glad to hear you are developing your emotional rhino skin!
 

worriedson77

Registered User
Jan 29, 2020
53
Hi @Pete1, tomorrow is the memory clinic but they suggested that they would refer for a scan after testing at a later date, have been in contact with the nurse already basically giving them the full picture because since the weekend mums been a coiled spring and 100% convinced that she is 110% well! In her reality she is completely fine but stressed out with all of these people she has to keep seeing due to me being underhand so wants to be left alone, I think today the reminder call from the clinic made her go back to that as well so left me a rather lengthy voicemail spelling out that if she wants help she will ask for it and I will be the last one she asks! (I was at work but the missed call notification and voicemail icon filled me with instant dread!). Am hopeful that the let's prove everyone wrong is the correct tactic but is there any other desperate measure that anyone else has employed successfully if that doesnt work on the day? Just asking because it does seem that she associates me with things shes not happy about which is fine but could also lead to her refusing to get in the car with me! I am working also on a list minute.com approach whereby trusted neighbour is getting her out of bed and reminding her on the morning and I aim to turn up and basically get her in the car for the 10 minute journey
 

canary

Registered User
Feb 25, 2014
13,370
South coast
I am working also on a list minute.com approach whereby trusted neighbour is getting her out of bed and reminding her on the morning and I aim to turn up and basically get her in the car for the 10 minute journey
Sounds like a good plan.
Hope it goes well tomorrow
 

Pete1

Registered User
Jul 16, 2019
866
Good idea @worriedson77, I hope you manage to complete the test with minimal stress. I meant to write my Mum had already forgotten on the trip home - so hopefully when it is completed your Mum will have forgotten fairly soon. Perhaps a cuppa an a cake after might take her mind off it.
 

worriedson77

Registered User
Jan 29, 2020
53
Just a quick note to say thanks for the good wishes. Mum kicked off big style at trusted neighbour who essentially as on wake up duty but they did an amazing job that by the time I had gotten around mum was almost excited to be going! The short journey was fine and I had gifted her an old lost photo that i had been given by my cousin and had printed and framed for her which she was so chuffed with that by the time we saw the memory nurse (Who was exceptional) mum was on her a game. I had a pang of guilt as I thought how well she seemed to be doing in conversation and worried she would somehow score much better than I had witnessed over the recent months. She did a short test which I think was a Moca one and I dont know the score achieved but certain questions she did really well but the memory bit was absolutely a wash out, the nurse was gently explaining that she would book a brain scan and gave leaflets that indicated she felt that there were certainly issues and subsequently emailed me numbers for social services and the carers trust have asked for a bit of a steer with where we are but I couldn't ask af the time for fear of upsetting mum. On the way home she asked if she had passed the test or did she have alzheimer's and I said I didnt know (But then recalled the nurse clearly explaining that alz was a specific type of dementia and expanding on dementia and how she could manage it). After a cuppa and a bit of a play with my young son I drove her home, she seemed absolutely cream crackered like the effort of the test and trying to portray herself as having no issues took a lot of effort but at least she got there fine and was not upset, back to the day to day but I suppose with less concern than before.
 

Weasell

Registered User
Oct 21, 2019
533
Thinking ahead.
The evening before the scan.
would it be worth getting one of your friends to telephone her and say they are from the memory clinic, just reminding her about the appointment tomorrow, saying she did well in the tests, but the scan is essential so they can complete all the paperwork?
My mother has ‘ white coat syndrome’ where if a medical professional requests something or says something then it must be right!