• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Hello - I am a new member!

cara

Registered User
Jun 7, 2006
2
dorset
Hello everyone,

I am a new member and I am so pleased to have found a place where there are so many people in situations similar to my own. I was beginning to feel so isolated.

My Mum is in hospital at the moment. She is 81 years young and has been living alone for 6 years. Her memory has been failing for some time, and she has become more and more confused. Being a very independent, strong woman it took 3 cancelled appts to the doctor to finally get her there to talk about things. Sadly though things have deteriorated rather quickly. She began to see faces in plants and trees and she experienced very frightening hallucinations. So very reluctantly she has been admitted into hosipital.

She has been there for over 3 weeks now and this whole experience is becoming very distressing. The brain scan is normal, but my mothers behaviour and well being is not. She verbally abuses me every time I visit and says such awful things to me that I cannot repeat and I feel deeply wounded. She begs me to take her home and I just want to whisk her up and do that, but in my right mind I know that she is very ill and needs proper care.

Will I get a diagnosis? Where has my mother gone?

Is there anyone that has experienced similar?

Pots of Love to all, Cx
 
Last edited:

Amy

Registered User
Jan 4, 2006
3,453
Hiya Cara,
I know it doesn't always help, but try and remember that it is the illness speaking when your mum says hurtful things. Your mother is still there, and if not now, you will in the future catch glimpses of her - a look, the way she holds herself, a comment. Is your mum being given any medication? How is she when you are not there?
When we are hurting and frightened, we frequently lash out at those that we love the most - I don't think that the dementia changes that - just hang in there with your mum, she needs you. Remember the nasty things she says are an expression of her pain and confusion, and she can nolonger express it as you or I would.
Take care.
Helen
 

mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
Hi Cara
yes it's hard isn't it?I remember the first time mum was verbally abusive to me and it left me in floods of tears.....I really couldn't understand what was happening. Now it doesn't really hurt anymore....when she's being like that I look upon her as a stranger and that makes me feel so much better(that was some advice i got from TP!!)
I don't see much of my old mum now but its a gradual decline in mum's case so occasionally she "comes back" to me..........sometimes after she's given me a mouthful which can be hard to cope with:confused:
take care
Wendy
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hi Cara
the verbal abuse is a common thing.
My wife will tell me how much she loves me,how she could not survive without me and as long as she has me she does'nt care.
Without warning and for no apparent reason she will tell me to drop dead,how did she ever get mixed up with me,Iam evil one of the devil's men.
She says she is going to poison me,cut off my head,go jump down the stairs etc etc etc.
I know that this is not my Peg but that horrible AD,I also know that this abuse will pass and I will get a better period for a while.
So Cara ride it out and it will get better
Norman
 

dmc

Registered User
Mar 13, 2006
1,157
hello cara,

my mum was very similar to your mum when she was first admitted to hospital last december, before her diagnosis, it took then till february to diagnose her with dementia, with medication they have managed to control the hallucinations she was experiencing, she was also hearing voices in her head which thankfully have now disappeared with medication.
hopefully when you get a proper diagnosis they can control your mums moods with medication.
hang on in there, it is hurtfull when when you get all the abuse but after a time you do get to realise it is the dementia and not your loved one," speaking"
keep posting it does help,
best wishes
 

Helena

Registered User
May 24, 2006
715
OK so its the disease talking but i see no way anyone should put up with the abuse

If roles were reveresed and you as the child spoke to them like that you would really be for it

Maybe we are all too darn patient and we ought to give as good as we get
 

DaisyG

Registered User
Feb 20, 2006
183
North West England
Abuse....

I get verbally abused most days.

I have tried to make some kind of diary of when this happens... thinking that it may come with high - low 'sugar lows' ... but NO...
There is no pattern, and name calling is NOT related to 'blood sugar'.
Got the doc to check for diabetes just in case...

I think I'm more sensitive to the name calling 'at certain times of the month' ???
It DOES NOT (so far) get any easier when you are called STUPID, DUMB, USELESS, WORTHLESS... etc on a daily basis.... (omitting the swear words !!)

(I know I'm not any of these things, but still... they have been said).
Some days it seems 'easier' to 'block out' ... if you know what I mean.

I know it may be part of AD, but I would say (for me) it is one of the harder things to deal with... especially when it is SEVERAL TIMES A DAY.... EVERY DAY.


Any thoughts from others?

DaisyG
 

mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
"Maybe we are all too darn patient and we ought to give as good as we get"


believe me ...I often do.....however it's usually ME that ends up suffering....with mum its forgotten....with me the guilt goes on for ages....Mind you if I treat my mum like a naughty child it seems to stop her in her tracks.....she goes off and sulks....
 

DaisyG

Registered User
Feb 20, 2006
183
North West England
Abuse....

I get verbally abused most days.

I have tried to make some kind of diary of when this happens... thinking that it may come with high - low 'sugar lows' ... but NO...
There is no pattern, and name calling is NOT related to 'blood sugar'.
Got the doc to check for diabetes just in case...

I think I'm more sensitive to the name calling 'at certain times of the month' ???
It DOES NOT (so far) get any easier when you are called STUPID, DUMB, USELESS, WORTHLESS... etc on a daily basis.... (omitting the swear words !!)

(I know I'm not any of these things, but still... they have been said).
Some days it seems 'easier' to 'block out' ... if you know what I mean.

I know it may be part of AD, but I would say (for me) it is one of the harder things to deal with... especially when it is SEVERAL TIMES A DAY.... EVERY DAY.


Any thoughts from others?

DaisyG
 

cara

Registered User
Jun 7, 2006
2
dorset
Thank you for your kind words and advice. Guess I need to learn how to detach myself in these difficult times. It is very hard though when you are so emotionally attached to your loved one. My brother just cannot handle it (there is only the two of us). I do tell her she is loved so very much, and try to hug her. But, it is getting harder to connect in that way and she pushes me away.

The doctors have prescribed "quetiapine" (seroquel) - I need to do my homework on this drug. They have told us that it takes 6-8 weeks to take affect.

The nurse told me that the psychiatric team have been to see her and want to see her as an out patient?! :confused:

I am going to phone and make an appt with the doctor today because I am worried about the situation.

Cara
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Helena said:
OK so its the disease talking but i see no way anyone should put up with the abuse

If roles were reveresed and you as the child spoke to them like that you would really be for it

Maybe we are all too darn patient and we ought to give as good as we get
I don't think you can equate the AD sufferer with a child. A child has a perfectly good brain (albeit a child's brain) and needs to learn socially appropriate behaviour. We expect children to behave in different ways as their brains (and bodies) grow and develop - eg. a toddler can throw a tantrum and be treated differently to a ten year old throwing a tantrum.

The person with AD has no control over their brain - they can no longer learn new behaviour - or even use old behaviour. When you say "no one should put up with abuse", it is a fair comment if the abuser knows s/he is being abusive and can control it. If s/he does not know and cannot control it, how does it help to say you "won't put up with it"? If a blind person bumps into you because they can't see you, you would not blame them for bumping into you, would you?? I think we should treat people with AD similarly - don't hold them responsible for behaviour they can't help.
 

Michael E

Registered User
Apr 14, 2005
619
Ronda Spain
There are some really stressed and sad posts around tonight - I am sitting at 03.30 in the morning 'wide eyed but not legless'.......

I think that somebody with AD is somebody with AD.. Whatever their character was before the illness it is still there. They are still much the same person but have lost their recent memory and the ability to concentrate.

They do become very self centred and self interested - maybe because they find controlling their lives so impossible. They do make demands that are selfish and unfair to the person looking after them... Like children or people with power they become 'corrupt' (too strong a word) 'warped' is not right either but they do push the frontiers, have 'tantrums' try to manipulate by any means available those around to get their own selfish wishes... Just cos they have got AD does not make them nice people.

Having said all that - it must be scary as hell to be in that confused and frightened head. To not know what room you are in... To be like a blind person alone in a totally strange place and not know where you are or why you are there... There was a John Wyndham novel called The Day of the Triffids which had almost the entire population blind because of a meteor shower... One man had found a little girl of around 12 who could still see - he had her chained to him so she could not escape. He lashed out and tried to kill anybody who came near or tried to take her from him.. No mercy - he knew the only way he would survive was if he kept control of the little girl......... Looking after someone with AD is perhaps a bit of being that little girl and the sufferer being that blind man trying to survive....

Michael
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I think we should treat people with AD similarly - don't hold them responsible for behaviour they can't help
you hit the nail on the head.

Doesn't mean it is easy for us, or for them, but it is just the way it is.
 

Helena

Registered User
May 24, 2006
715
"manipulative and controlling"

well that certainly describes my Mother

I am afraid I do not actually believe AD patients do not know what they are doing

I do not actually think they are frightened

from what I have experienced of my Mother I think she knows all too well what she is doing in her world and she sure as heck is determined not to co operate with anyone else for one single minute
 

dmc

Registered User
Mar 13, 2006
1,157
I cant believe my mum would willingly do any of the things that are happening to her at the moment, she's petrified of the man she's loved and lived with for 45 years, she's so scared she ran into a neighbours last night to hide from him, why would she willingly hurt him in this way?
i have had a good relationship with my mum we went and done everything together, why would she suddenly start shouting at me and telling me to get out of her house, if it wasnt for the dementia, it is frustrating and hurtfull they act in this way, but untill you can walk in their shoes and experience the hell their going through, we can never understand,

this is only my opinion of my mums dementia i realise that everyone differs, in their opinion of this disease.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Sometimes it may make family members easier in themselves to believe that the people with dementia are doing things totally consciously. It can take away some of the pain the carer feels if they think that the person is doing nasty things quite consciously.

I believe people with dementia may use what faculties they have in whatever way they feel will help them, in the way that any body [human or animal] will, in order to survive. However, I believe this is in the context of failing mental and physical coordination, and the people cannot be held accountable in the same way that someone without dementia could.

Still a bummer for the person looking on, of course.....
 

Kayla

Registered User
May 14, 2006
621
Kent
Hallucinations and behaviour

My Mum had some very disturbing hallucinations which were sucessfully controlled with a low dose of Haliperidol for a while and then she was very depressed and she was given Citalopram. When she went into a care home, because she was frightened of falling and she had disturbing dreams, these drugs were stopped and she seemed much better and the routine and company were good for her. The fall which put her into a nursing home made her vascular dementia far worse than before and they have been trying to find the right balance of drugs for her.
She has stopped crying all the time and although she still has hallucinations, they are comforting ones. She thinks that my Dad (who died in 2000) is with her in her room and he dives under the bed when staff come in! They seem happy to keep her in the general nursing section because she is quiet and co-operative. She is in a wheelchair now, but able to hold an intelligent if somewhat weird conversation. She thinks her room keeps changing and says that the NH garden is a pub garden. It must be very frightening for dementia patients if they can't interpret what they see correctly.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Interesting thoughts, Helena. Sorry, it's sounding so tough for you just now.

Given there appears to be such a radical change in mine and mother's relationship since her 'memory problems' began, I have been constantly engaged by people's thoughts on how dementia 'magnifies' certain characteristics... especially in light of how wonderfully our relationship has improved!:confused:

I'm talking elimination, here, rather than magnification! But then I must question -is it mum that has changed? PERHAPS IT'S ME, and my perception of her and our relationship!???

If dementia can (physiologically - is that the right word?) change or magnify elements of a personality in the sufferer, can the magnitude of its diagnosis not also have some impact on the carer(s) and their characteristics and behaviour.... (on purely an emotional level).....?????

Sorry, thinking out loud - if I'm getting into the murky waters of self-analysis - need to go grab the life-jacket!

Love, Karen, x
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Helena

I was reading your other post one about your mum being section & all hell braking out if member of her family where around , but I was wondering & this may sound hard ,but said with compassion .

If your mum start to wonder out at night on her own & it does get out of control ,may-be your going to have to do that or someone in your family is going to have to , what does other member of your family say about your mother situation . I hope it does not come to that can you not find out some how who your mother doctor is & contact him ?
 

Helena

Registered User
May 24, 2006
715
If my Mother goes wandering out at night no doubt the neighbours will call in social services and tell them they need to section her

One neighbour has already told me she should not be living alone .......well i know that but my Mother insists come hell or high water she is not moving out of her home ...........she might talk gibberish at times but in her lucid moments thats the one thing that is always said

It seems theres a huge difference in the behaviour of Lewy body patients to those with Alzheimers

Its certainly a roller coaster ride so that you do not know where you are from one day to the next