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Not remembering and not meaning?

asriela

Registered User
Oct 17, 2021
39
0
We accept that our PWDs don't remember all the things they say and do to hurt and annoy us but how do we know that, at the time they say and do them, they don't mean them? For example, my mother calls me a "useless big lump of laziness" and then forgets that she has said that. But when she said it, how do we know she didnt mean it?

My partner thinks she does mean it and that my mother has been coercively controlling me for years but I am interested in other people's thoughts on this.
 

Rosettastone57

Registered User
Oct 27, 2016
1,702
0
This is an interesting point and I can only give my experiences with my mother in law. She was a self absorbed, controlling woman who emotionally abused my husband and his sister throughout childhood and into adulthood. When I met my husband, she was recently widowed and actively sought her children's attention by constantly trying to undermine them and use emotional blackmail to get them to deal with her every need. She was often verbally abusive to them and flew into rages very easily. At the time, she meant her nasty accusations. She was eventually diagnosed with a personality disorder.

When dementia came on the scene, she was equally offensive, if not more so. I had some input from the charity Mind who came to do a training session with my husband and I ,although most of the care was undertaken by carers, to try and make sense of the changes in her. The trainer told us that we were dealing with both mental illness eg her personality and depression, OCD, as well as her mixed dementia . This made for a toxic mix, but it meant that it was difficult to unravel her behaviour as either mental health or dementia.

Personally, I believe she meant every word at the time it was said , throughout her life. She never showed any remorse for the upset she caused, way before dementia
 

LunaJ

Registered User
Mar 24, 2021
29
0
I agree totally with @Rosettastone57, my Mother was also emotionally abusive, controlling and selfish prior to dementia. She still displays these characteristics in spades now that she has dementia, it's just who she is, unfortunately, dementia or not.
I wouldn't necessarily say she means it, I just think that's who she is and she can't help it, either pre or post dementia.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,741
0
Nottinghamshire
Hi @asriela, my mother was always rather jealous of me doing things she would have liked to do when younger, something I only twigged when her dementia was quite advanced and she suddenly said how much she liked the way I did my make-up as a young woman. At the time she was always telling me how awful it looked, and I actually never wear make-up now partly because of that. At the same time she was blaming me for all the things that were going wrong due her dementia and accused me of treating her like a child. That was probably true, but I was finding it difficult to strike the right tone to get her to do the things she needed to do.
I think dementia exaggerates the person with dementia's (PWD) personality. So mum was always rather self-centred and became more so. She was also a flirt who wanted men's attention and that led to some inappropriate behaviour when she thought men fancied her.
Are you a full-time carer for your mother? This was something I could never have done, and when she was well mum would never have wanted me to do, so when she needed more care I arranged for her to move to a care home.
BTW, before dementia my mum was in lots of ways a wonderful woman. Funny, intelligent, tough and assertive. We had some great time going out shopping or to the theatre, but she was never anyone I would trust with my deepest thoughts and emotions.
 

canary

Registered User
Feb 25, 2014
18,195
0
South coast
I put a post on here, but it seems to have gone missing. I said that I thought that at the time that they said these terrible things, they really thought it was true, but that their brain was so confused and they had lost their grip on reality, so it didnt reflect what they would have previously thought.

Mum used to be much more abusive in the evening when she was sundowning and even more confused than she was the rest of the day. Mum was never an abusive or controlling woman prior to her dementia and the things she said were completely out of character. It was the malfunctioning brain circuits due to dementia causing it.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,103
0
High Peak
Mum and I never got on. She always took great pleasure (seemingly) in telling me what a let down I was. It bothered me a lot when I was young but I gradually realised I could never have lived up to what her expectations were. And 1) I didn't want to and 2) I didn't care.

She continued in this vein when dementia set in but I could usually see the dementia part: she'd start in by saying what a disappointment I was. Then she'd think for a minute and start building on it. I went from being a disappointment to the worst daughter ever and how could I do such things? If I let her train of thought continue it would escalate till I'd taken all her money and houses, put her in 'this awful place' and personally told them not to feed her or even allow her a cup of tea. Often she went so far that she'd forgotten who she was talking about by the end of the rant! So I knew 'dementia mum' had taken over. She did the same thing when talking of my father or my brother or one of the carers. An innocent comment such as, 'Oh she's always like that' could easily escalate into, 'She's an evil b*tch and a thief!'

It was very hard to distract her once she got going so I would say, 'If you're just going to be mean and horrible about people, I'm going.' There's only so much I can put up with....
 

JanBWiltshire

Registered User
Jun 23, 2020
157
0
Mum and I never got on. She always took great pleasure (seemingly) in telling me what a let down I was. It bothered me a lot when I was young but I gradually realised I could never have lived up to what her expectations were. And 1) I didn't want to and 2) I didn't care.

She continued in this vein when dementia set in but I could usually see the dementia part: she'd start in by saying what a disappointment I was. Then she'd think for a minute and start building on it. I went from being a disappointment to the worst daughter ever and how could I do such things? If I let her train of thought continue it would escalate till I'd taken all her money and houses, put her in 'this awful place' and personally told them not to feed her or even allow her a cup of tea. Often she went so far that she'd forgotten who she was talking about by the end of the rant! So I knew 'dementia mum' had taken over. She did the same thing when talking of my father or my brother or one of the carers. An innocent comment such as, 'Oh she's always like that' could easily escalate into, 'She's an evil b*tch and a thief!'

It was very hard to distract her once she got going so I would say, 'If you're just going to be mean and horrible about people, I'm going.' There's only so much I can put up with....
I’m interested hearing this as my mother recently told me what a disappointment I was and it hit me really hard. However, it was also a turning point to make me realise this dementia is far more evil and complex than I had realised. My mother doesn’t have “sweet old lady dementia” rather “devil incarnate dementia”. These are two very distinctly different scenarios, as we all know. I now know so much and can finally understand it rather better as well as my (bad) reaction to it.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,103
0
High Peak
It's not what a child ever wants to hear, is it? An example of my dear mama's behaviour, many years before dementia: every year she would tear the Times Rich List from the paper and keep it for me when I visited. Then she'd point to a name or two and say, 'Look - he used to go to XX Grammar School (across the road from my grammar school and where I dated several boys...) and he's a multi-millionaire! Why didn't you go out with him?' She was still saying this when I was in my 30s, in front of my (then) husband and kids. Charming, huh? My dad would do the same. Fortunately, he died 20-odd years ago and my mother has been gone for 2 years now.

Not all families are happy families.
 

Martyn's

Registered User
Dec 16, 2015
2
0
Ashford Kent
We accept that our PWDs don't remember all the things they say and do to hurt and annoy us but how do we know that, at the time they say and do them, they don't mean them? For example, my mother calls me a "useless big lump of laziness" and then forgets that she has said that. But when she said it, how do we know she didnt mean it?

My partner thinks she does mean it and that my mother has been coercively controlling me for years but I am interested in other people's thoughts on this.
Has she said things like this before ? or is this out of character for her
 

asriela

Registered User
Oct 17, 2021
39
0
@Sarasa, yes for my sins (and they must have been plentiful and bad lol) I am looking after my mum full time since she was discharged from hospital having broken her hip and wrist. To be fair to the hospital they very nicely implied that I would not be able to manage her but I thought "och no, we'll manage fine!". It has proved much harder than I thought and unfortunately I have no family (apart from my partner, who does his best) and no friends because, like my mother I am a bit of a loner. We have carers visiting to wash her in the morning and change her pull ups.

I am by nature an impatient person so you can imagine how i fail to cope with the constant repetition dementia brings. I still cannot quite bring myself to put her in a home as i am sure she would not like it and I think that I would see it as a failure on my part - everything would be fine if I could just be better/more patient/kinder/more compassionate etc.

@Martyn's - now that is an interesting point. It is not entirely out of character but not entirely in character either. My mother was always a very independent woman so at some level she must find all this hard. Funnily enough, after 4 years since her diagnosis it is only now that she has started to have some insight into her condition although it only amounts to saying occassinally that there is something wrong with her and she doesnt know what.

We had the very worst night so far last night with me roaring like a fishwife and speaking to her in a really appallingly bad way but a new day has dawned and we are muddling along as usual.

Anyhoo, sorry for droning on - but this forum has helped me hugely. Thank you to everyone.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,741
0
Nottinghamshire
@asriela , if your mother needs to move into care it will not be due to a failure on your part to be kinder, more patient etc etc. Although some people have managed to care for their loved one at home until they died most people with dementia do end up going into care eventually.
Being in a care home will not be a disaster if it happens. Your mum will be well cared for and you can go back to being a daughter rather than a frazzled carer.
 

JanBWiltshire

Registered User
Jun 23, 2020
157
0
@asriela , if your mother needs to move into care it will not be due to a failure on your part to be kinder, more patient etc etc. Although some people have managed to care for their loved one at home until they died most people with dementia do end up going into care eventually.
Being in a care home will not be a disaster if it happens. Your mum will be well cared for and you can go back to being a daughter rather than a frazzled carer.
You are so right about this. Sadly, the person with dementia rarely sees reason on anything to do with their best interests. It has taken me a long time to realise there is no point in even having a conversation about things because my five year old granddaughter would give a more informed reply!
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
I think that we have to learn not to take what a person with dementia says in a personal sense though I understand that can be a really difficult thing to do.

What my husband was saying to me a few weeks ago is the complete opposite of what he tells me now.

I try and accept that if he is really difficult, then that is a reflection more of his internal struggles and though I am the target, I know that I am not the dreadful person he accuses me of being so I try not to take it on board. That is not to say that I don‘t find his behaviour frustrating and annoying and I don’t hate living with his irritability, his constant complaints and accusations.

But I do know that with his physical ailments and his Alzheimer’s, he must have many days where he is fearful and anxious and feel unwell. His paranoia was evident three years before his diagnosis so I have learned not be surprised by his outbursts. At the moment we are having a very nice time and that is far more surprising to me. Who knows, I might wake up tomorrow morning and have the unpleasant version back.

Why do we expect ongoing ’normal’ behaviour from someone with Alzheimer’s?
 

asriela

Registered User
Oct 17, 2021
39
0
my main problem is irritation. my mother is at the shadowing stage and she has no sense of time so i often leave her in bed, where she solemnly declares she will stay til i come back, I pop through to the kitchen to make her a cup of tea and as i switch on the kettle, there she is at my shoulder. Grr.

She is supposed to stay in bed and rest her healing broken hip but she parades all the time and even goes upstairs and resists all attemps to stop her - i am afraid to touch her in case she falls again. I have moved into the same room as her to sleep and i spend about 15 out of 17 waking hours with her but it is still not enough.

I have just bought a 2 way baby monitor in the hope that I can get on my vital house related issues and still reassure her with my voice. She is at the stage where although her eyesight is OK, her brain cannot decipher what she sees and the only task she can concentrate on apart from walking about, is eating and even then, i have to start her off with feeding her a mouthful.
 

canary

Registered User
Feb 25, 2014
18,195
0
South coast
Im sorry @asriela
When someone reaches the shadowing stage it happens because their memory is so poor and only lasts less than two minutes, so they literally cannot remember from one minute to the next where they are, what is happening to them, what they are supposed to be doing, what they have been told etc etc. At this stage they need someone within eyeshot of them literally every second that they are awake to reassure them and direct them, or they become afraid.

This must be incredibly difficult for you as you tell her she needs to lie down for her broken hip to heal and she will agree, but then two minutes later she has forgotten that conversation, forgotten that she has broken her hip, doesnt know what is happening, or if she is on her own and goes looking for someone.

I dont know what to suggest as mum was in a care home by this stage, so I didnt have to deal with the practicalities. I can only say that you are unlikely to be able to stop her and may in all probability have to re-arrange things around her.
 

Rosettastone57

Registered User
Oct 27, 2016
1,702
0
There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen . In my opinion you have now reached that point. Your mother needs 24/7 supervision, with a whole team looking after her, in a care home. Your mother wouldn't be happy wherever she is , it's the nature of the illness. I'm sure that's not what you want to hear.
 

asriela

Registered User
Oct 17, 2021
39
0
@canary and @Rosettastone57 - thank you both. Wise words and things to think about. I know I do bang about things but, honestly, this group is great. I have never been a group sort of person, i like to "go it alone" but you are all so supportive and sensible.

I really want to do what is best for her and she keeps saying she is best at home. But on the other hand, the time has probably come when she doesnt know what is best for her. I would hate her last years to be somewhere she doesnt want to be.