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Second guessing everything

worriedson77

Registered User
Jan 29, 2020
51
I wanted to seek opinion really as I am only 3 weeks into this journey with mum. Would say the first 2 weeks were absolutely overwhelming and filled with huge declines in memory accompanied by accusatory behaviour and aggression which made it clear to me (And the dr) that something is amiss. The past week I would describe as relatively normal in that there is evidence of memory issues but these seem less acute than before (She can remember seeing someone a few days ago but before didnt remember seeing someone hours before) but being honest I have completely allowed the conversation to be controlled by her, she does repeat the same anecdotes and bridges back to the same specific times of her life but also seems to manage to evade talking about the recent past and appears to hold perfectly normal conversations. She also randomly whilst repeating a story said she knew she had told me this 100s of time already but at the same time is sort of as much as it pains me to say making stuff up. She said the dr said she is super fit and healthy (They didnt) and that her sister who has alzheimer's/dementia is only in difficulties because she wrote everything down whereas she never forgets because she wont write things down (She obviously does forget things). She also has hinted at the extra care and attention she is getting is annoying her as he is very independent. Sorry for the ramble but I was just wondering if this was usual? If she went into a shop or the like, I don't know whether they would know that there was something amiss whereas last week there would have been no doubt and so whilst I am slightly relieved that her symptoms seem to have levelled off a bit rather than continuing the decline, I also am questioning whether firstly she has been suffering for longer without me realising and secondly whether she would be able to pull the wool over for example the memory clinics eyes which she is attending in a few weeks? Should I remind her of the drs thoughts or leave her be in this denial bit where she at least seems happier?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,052
Kent
Hello @worriedson77

I have completely allowed the conversation to be controlled by her,
This is the best thing you can do.

Everything you have written is usual behaviour from someone with dementia. So many are unable to grasp the concept of dementia and although they may be aware of changes in their thoughts and behaviours they may be unable to have enough insight to go with it.

Because your mum is eating, sleeping, walking and breathing, because she is still able to continue with relatively normal activities, and because she has no pain she will continue to insist there is nothing wrong with her so discussing dementia will not only add to her confusion and distress and cause you to fight a losing battle.

Your mum has probably had the early stages of dementia for a long time. It`s not a case of pulling wool over anyone`s eyes, it`s more an inability to pinpoint something wrong.

I hope Dementia Talking Point will be able to answer many of your questions and you will find the support you need here.

Perhaps the following will help;

 

Pete1

Registered User
Jul 16, 2019
702
I also am questioning whether firstly she has been suffering for longer without me realising and secondly whether she would be able to pull the wool over for example the memory clinics eyes which she is attending in a few weeks? Should I remind her of the drs thoughts or leave her be in this denial bit where she at least seems happier?
Hi @worriedson77, it is quite likely that Mum has been struggling for longer than you realise. The Memory Clinic are used to dealing with someone in your Mum's situation - the tests they will conduct should reveal and set a benchmark for Mum's dementia. Personally I initially kept reminding Mum of the diagnosis etc, but realised it didn't really do any good (it was more for my benefit in the hope she would suddenly accept the situation, which of course wasn't the case) with the benefit of hindsight I think it is better not to go over that ground. I also found, ironically, that the trip to the Memory Clinic was pretty much forgotten on the drive home. If Mum occasionally questioned 'why am I like this?' I just used to say her memory wasn't so good and she sometimes got in a pickle but had a lot of support to help her (try to alleviate any anxiety). At the end of the day the diagnosis potentially opens the door for treatment (medication in some cases) or to instigate care support and funding (such as Attendance Allowance), it is really just a name to what Mum has been going through, so it doesn't make any difference to her (if you see what I mean). It's good that Mum has you looking out for her, although sometimes it might not seem like that. Stay strong, all the best.
 

worriedson77

Registered User
Jan 29, 2020
51
Hi @worriedson77, it is quite likely that Mum has been struggling for longer than you realise. The Memory Clinic are used to dealing with someone in your Mum's situation - the tests they will conduct should reveal and set a benchmark for Mum's dementia. Personally I initially kept reminding Mum of the diagnosis etc, but realised it didn't really do any good (it was more for my benefit in the hope she would suddenly accept the situation, which of course wasn't the case) with the benefit of hindsight I think it is better not to go over that ground. I also found, ironically, that the trip to the Memory Clinic was pretty much forgotten on the drive home. If Mum occasionally questioned 'why am I like this?' I just used to say her memory wasn't so good and she sometimes got in a pickle but had a lot of support to help her (try to alleviate any anxiety). At the end of the day the diagnosis potentially opens the door for treatment (medication in some cases) or to instigate care support and funding (such as Attendance Allowance), it is really just a name to what Mum has been going through, so it doesn't make any difference to her (if you see what I mean). It's good that Mum has you looking out for her, although sometimes it might not seem like that. Stay strong, all the best.
Thanks so much for your reply, it is a real comfort knowing that mums experience is not unique and your tips I think will be really helpful because if I'm being honest I probably only think that she hasn't been so bad just because she hasn't been as aggressive towards me but haven't connected that the diagnosis/treatment bit is almost a gateway to getting mum appropriate care as opposed to being able to put a label on it for her, like you say she doesnt remember seeing the dr anyway so I suppose it's about keeping anxiety levels down and giving the appearance of business as usual but I still find I'm trying to rationalise what is happening even if I know deep down its impossible to do so.
 

worriedson77

Registered User
Jan 29, 2020
51
Hello @worriedson77



This is the best thing you can do.

Everything you have written is usual behaviour from someone with dementia. So many are unable to grasp the concept of dementia and although they may be aware of changes in their thoughts and behaviours they may be unable to have enough insight to go with it.

Because your mum is eating, sleeping, walking and breathing, because she is still able to continue with relatively normal activities, and because she has no pain she will continue to insist there is nothing wrong with her so discussing dementia will not only add to her confusion and distress and cause you to fight a losing battle.

Your mum has probably had the early stages of dementia for a long time. It`s not a case of pulling wool over anyone`s eyes, it`s more an inability to pinpoint something wrong.

I hope Dementia Talking Point will be able to answer many of your questions and you will find the support you need here.

Perhaps the following will help;

Hi @grannieg thank you for your response and the link is brilliant, I am printing of the do and dont so I have a bit of reminding in these early days because I am slipping up occasionally and think at this point it's because I am still hoping that the diagnosis for mum could be wrong so keep testing it rather than accepting it - possibly because she is so convincing when it comes to her adamance of being perfectly fine!
 

canary

Registered User
Feb 25, 2014
12,139
South coast
Hi @worriedson77
I suddenly realised that my mum had dementia when she started accusing people of stealing from her. I knew that this was a really common delusion, so it was a wake up call to me and I think that she had had dementia for several years beforehand although she tried hard to hide it. Mum too was convinced that there was nothing wrong with her, even though the doctor at the memory clinic told her (kindly, but to her face) that she had Alzheimers. This loss of insight is a really, really common symptom of dementia that no-one talks about much - except in places like this forum.

Another symptom that you have noticed, that no-one talks about, is confabulation - what you referred to as telling lies. It is actually an unconscious result of the brain filling in gaps in the memory to try and make sense of everything. To the person it seems just like a real memory, so they are convinced that it is true and cant be convinced otherwise. Im afraid that, unless its something that upsets them, its best to just go along with it.
 

Pete1

Registered User
Jul 16, 2019
702
I still find I'm trying to rationalise what is happening even if I know deep down its impossible to do so.
Hi @worriedson77, I totally understand that, I would do the same - it isn't something I found I could suddenly let go of overnight, it took me a while to come to terms with it. It's very easy to hear advice and know it's the right thing, it's sometimes extremely difficult to do, especially if you are in the midst a dementia loop (i.e. going over the same things repeatedly). Don't be too hard on yourself, with the benefit of hindsight I would have done some things differently, but that is without having that relentless pressure of the situation. Keep posting, I'm sure you will get plenty of good advice on issues as an when they arise. All the best.
 

worriedson77

Registered User
Jan 29, 2020
51
Hi @worriedson77
I suddenly realised that my mum had dementia when she started accusing people of stealing from her. I knew that this was a really common delusion, so it was a wake up call to me and I think that she had had dementia for several years beforehand although she tried hard to hide it. Mum too was convinced that there was nothing wrong with her, even though the doctor at the memory clinic told her (kindly, but to her face) that she had Alzheimers. This loss of insight is a really, really common symptom of dementia that no-one talks about much - except in places like this forum.

Another symptom that you have noticed, that no-one talks about, is confabulation - what you referred to as telling lies. It is actually an unconscious result of the brain filling in gaps in the memory to try and make sense of everything. To the person it seems just like a real memory, so they are convinced that it is true and cant be convinced otherwise. Im afraid that, unless its something that upsets them, its best to just go along with it.
Thanks @canary really appreciate your comments its definitely a learning experience for me but your input means so much and it's really a source of comfort and no doubt will help me deal with mum in the best way for her
 

worriedson77

Registered User
Jan 29, 2020
51
Hi @worriedson77, I totally understand that, I would do the same - it isn't something I found I could suddenly let go of overnight, it took me a while to come to terms with it. It's very easy to hear advice and know it's the right thing, it's sometimes extremely difficult to do, especially if you are in the midst a dementia loop (i.e. going over the same things repeatedly). Don't be too hard on yourself, with the benefit of hindsight I would have done some things differently, but that is without having that relentless pressure of the situation. Keep posting, I'm sure you will get plenty of good advice on issues as an when they arise. All the best.
Thanks again :)
 

Sarasa

Registered User
Apr 13, 2018
1,195
Hi @worriedson77 , I think the early months when you know something isn’t quite right with your loved one and you suspect it might be dementia are the trickiest, as often others don’t see quite what you see and the PWD (person with dementia) is claiming every thing is fine. I realised things were awry with my mum about three years ago after she’d caught a virus and stayed with us for a few days to be looked after. It took nearly two years for her to be officially diagnosed as she was very good at putting on a front, and as it was logic rather than memory that was effected at first it wasn’t that obvious to pick up on. I also spent a long time thinking I was making things worse as whatever I tried to do to help ended up making mum cross and confused. Things came to a head last spring and mum has been in a home ever since. She still thinks there is nothing wrong with her, but she now needs support 24/7.
Try and put as many things into place such a Lasting Power of Attorney while you can. This forum is a brilliant place for support btw.

Edited to make my ramblings a bit clearer!
 
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worriedson77

Registered User
Jan 29, 2020
51
Hi @worriedson77 , I think the early months when you know something isn’t quite right with your loved one and you suspect it might be dementia are the trickiest, as often others don’t see quite what you see and the PWD (person with dementia) is claiming every thing is fine. I realised things were awry with my mum about three years ago after she’d caught a virus and stayed with us for a few days to be looked after. It took nearly two years for her to be officially diagnosed as she was very good at putting on a front, and as it was logic rather than memory that was effected at first it wasn’t that obvious to pick up on. I also spent a long time thinking I was making things worse as whatever I tried to do to help ended up making things worse. Things came to a head last spring and mum has been in a home ever since. She still thinks there is nothing wrong with her, but she now needs support 24/7.
Try and put as many things into place such a Lasting Power of Attorney while you can. This forum is a brilliant place for support btw.
Thanks @Sarasa you are spot on with this being a really good place for support. I managed in a moment of clarity to get lpas signed and sent off, obviously now I am probably stupidly waiting in trepidation when the opg write to mum because she in her opinion has no problems and it may well set off the anger/accusative stuff again. At the same time coming to realise I'm overthinking a lot and this forum has been such a goldmine of information and also to be fair a bit of a sanity check for myself too, it's hard not to feel alone especially when you begin to realise that your life long confidante in reality cant play the same role that you have relied on and so the advice and comfort from here/you just takes a bit of sting out of the tail which to me has been invaluable. Thank you
 

worriedson77

Registered User
Jan 29, 2020
51
Just a sort of mini update, Mum in herself has been sort of Ok. It's hard to admit but I see her good and bad days probably from too selfish a point of view in that if she is not angry and accusatory toward me then I see her as being in a better place than if she is oblivious or denying a problem. I know the reality is that it's all symptomatic of the same thing so feel a bit guilt that that is how I am reacting. With me she has probably been fine for a good week and a bit but she has gone off at her neighbour and her friend (the strange thing is when they relayed the story to me I couldn't stop shaking and got ringing in my ears) I was involved in her accusations but in league with the person she was speaking to as opposed to being the sole villain of the piece and with me she has been fine, long chats and kids birthdays to distract but as I mentioned I am letting her control what she talks about and interacting with that rather than trying to get her to do anything or check on her so it's really been her and I talking about her childhood and my early childhood but nothing from the past few days, months or years. Anyway when Mum went off at neighbour, she said she had booked a drs appointment to get checked out because she is fed up of everyone saying she has a problem when she doesnt and she has actually booked an appointment for the next couple of days when I checked with them. It's not the worst news as expecting memory clinic letter any day soon and kind of in a way her admitting she has concerns but she has been getting upset with neighbour and has no recollection of being to the drs before and being told that she has got alzheimer's/dementia and it's a case of how far advanced rather than yes or no diagnosis. I haven't been mentioning the words or diagnosis and have eased completely off in even throwaway comments like "you remember when...." and very much focusing on present or as i said letting mum bridge to her memories and if I'm being completely honest you could have a 10 minute chat with her and not realise there was a problem (Beyond that repetition is quite obvious and also known info often changes or is not recalled) so I can understand how its confusing and scary for her. I dont know who keeps discussing the actual names of the conditions but she has them on her mind for sure and she must have an element of doubt to have proactively booked a drs appointment so i dont know if my approach needs to be different. Being hands off in terms of not repeating or reminding her of the issues seems to mean she is not hostile toward me directly but am I adding to the confusion from a purely personal perspective just because deep down I dont want or like being shouted at or accused of things? I do think that she sometimes still thinks that I am involved in telling anyone and everyone she has memory issues as in her reality it then somehow gives me an alibi but in all honesty they will have been able to work this out themselves but she is revealing a different behaviour to me than to say the neighbour. Me am at the sort of grandiose "never been fitter" stage or "maybe there is a problem but I don't want to know" but with others they are getting the "nothings wrong, it's all you lot that's trying to make me look crazy" stage. I would probably experience the latter if I was pushing but as I mentioned I haven't been as am playing the waiting game with memory clinic so don't see the point of daily reminders but its clearly still a worry so will have to see how the drs goes. Sorry for the ramble, woken up really early as per usual and just thought I would share
 

Palerider

Registered User
Aug 9, 2015
1,617
North West
Morning, Just been reading your posts and the replies

I think lots of good advice has been given and some I still use myself, @Grannie G s link to compassionate communication is very useful. @Pete1 mentioned people with dementia (pwd) getting stuck in loops, I think I realised early on that I as a carer would also get stuck in my own loops worrying about the dementia aspect of my mums life. I think you can only go with it and allow the pwd to control the conversations, thats because the pwd is experiencing something more than just memory loss and reminding or correcting someone with dementia is generally not a good idea as you have realised.

Mum and I were a good team over the last four years, but she did have her moments and outbursts at me, sometimes this was because I hadn't grasped what I was dealing with (dementia) and sometimes it was her own frustration with the world. I remember once early on I had got short with her over something and she simply said back to me 'I can't help it, its how my brain works now' -its moments like that the loop we are in as carers is finally broken. After that I changed the way how I thought about it all and also how I approached mum and the issues she was beginning to have.

I think you can drive yourself round the twist worrying about these things, but you can't control or change them, you can literally only go with it and find ways around problems as they arise. I spoke with mums neighbours and they had already realised mum wasn't her old self anyway. They did keep an eye on her and once they knew what was going on they generally did help her as much as she would let them (despite her denial). In the end the neighbours were invaluable and a few times they followed mum when she wandered and brought her home in the guise that the 'shops were closed' (there are no shops here for at least 6 miles). Its important to chat with the neighbours and let them know the state of play that is if they are good neighbours.

Its tough but finding a way is important because as you have realised a pwd can have many sides to them, some you won't see but others will see, but this is in all of us, dementia inhibits the ability to know how to respond and when, its not intentional behaviour because the working memory in dementia is shortened to only one or two things at a time compared to several things in someone without dementia.

Try not to think it all out too much, because there is no rhyme or reason sometimes in how pwd try to function -in their eyes they are doing the best the can
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,052
Kent
Keep sharing @worriedson77 It`s why TP is here.

There`s nothing selfish in adapting your living in order to keep the peace. If your mother is complaining to others about you it is part of her paranoia and self defence. She knows something is wrong but is unable to process it and because you are the closest to her and trying to seek help for her, the blame is on you.

I lived with this with my husband and know how much it hurts. Your behaviour is still the best way to keep the peace with your mum. Any slightest form of confrontation would be even more damaging to your relationship.

Look after yourself. I can feel how much stress you are living with.
 

canary

Registered User
Feb 25, 2014
12,139
South coast
Being hands off in terms of not repeating or reminding her of the issues seems to mean she is not hostile toward me directly but am I adding to the confusion from a purely personal perspective just because deep down I dont want or like being shouted at or accused of things?
I think you are handling it just right. You cant prevent the disease from progressing and you cant change her reaction to it, so your job now is to prevent her distress.
If you want then to accept things (like going to the doctor) you often have to be sneaky and tell "love lies" - if they cant accept the reallity of a situation then you have to use an explanasion that they can understand and will accept.
 

Pete1

Registered User
Jul 16, 2019
702
Hi @worriedson77, placating Mum in the way you are doing is the only way to go, for both of you - so you shouldn't feel guilty about that. You have obviously found a way that works for you at this moment in time, so stick to it for now.

With me she has probably been fine for a good week and a bit but she has gone off at her neighbour and her friend (the strange thing is when they relayed the story to me I couldn't stop shaking and got ringing in my ears) I was involved in her accusations but in league with the person she was speaking to
I found getting 'feedback' from 3rd parties really difficult to deal with - so I can relate to your anxiety, which I'm guessing is why you had the physical reaction to it (e.g. I remember being called when the Helpline had been out to Mum in the early hours as she had 'rung them' to say she had been kidnapped - this was a new development) I can only say after time the anxiety levels did reduce as my own 'emotional skin' toughened - it was like a rhino's skin in the end!

It sounds as though you aren't sleeping too well either with the worry of the situation. It tends to be lying in bed at night thinking of the days events and potential future events that sets the mind racing. This may sound like a total cliche but try and take it a day or week at a time - try not to think too far ahead and deal with the here and now. One day the penny suddenly dropped with me after a stressful incident filled day - Mum would have forgotten the day's events and it was just me who was replaying it over and over in my head, thinking of future events - to what purpose I questioned, and of course it was because I still had the mindset that I could change Mum's thinking and I could arrest the disease and that I should always have acted or done something slightly differently - all three of course were out of my control (even the doing/acting differently - you react in the moment, it's a simple as that).

I think if the anxiety and lack of sleep continues it might be worth having a chat with your GP sooner rather than later. All the best - keep posting.
 

worriedson77

Registered User
Jan 29, 2020
51
Thanks for the support it is a great comfort, I am thinking that seeing my own gp would be of value, I did wonder if like sundowning for pwd if sunrising could be a thing for carers as I certainly seem to be much worse first thing in the morning fearing what the day will bring!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,052
Kent
I know what you mean about sunrising with carers @worriedson77.

I was always at my lowest ebb when I woke in the morning while caring for my husband. It was a time I felt the most vulnerable.

I think it might be helpful if you visited your GP.
 

Lunamoon

New member
Sep 30, 2019
7
This thread has made me feel so much better - my mum has dementia but not enough to be in a home. Luckily my Dad is still capable of making sure everything goes ok (leaving the oven/hob on, taking the remote control out instead of her phone) but it's such a rollercoaster of emotions. One day she could be chatting away about anything and everything, the next she's sitting in my car in silence and I have no idea what to say. I'm so on edge around her now that we've lost all closeness and I feel endlessly guilty but she can be so difficult at times. She's suspicious and very picky about everything - she'll argue the colour of grass. She also makes up such stories about everything and we just go with it or she gets really upset. My Dad is becoming very lonely as she is a bit aggressive and accusing him of lots of things. It feels as though she lives in a little bubble of her own but the hardest thing is not being able to predict how she'll be at all. Sorry - feels like i'm having my own pity party but it's difficult to find people to relate to!
 

Petunia59

Registered User
Oct 11, 2019
50
Sorry - feels like i'm having my own pity party but it's difficult to find people to relate to!
No need to say sorry, Lunamoon. TP is full of carers who know how you feel. Keep posting and reading; you will soon realise you're not alone!