Can people with dementia be manipulative?

[Dunkery]

My mum has become increasingly clingy over the past couple of months. When I try to take the dog out even for just 10 minutes or when I organise for a sitter to stay with mum, while I go shopping etc, Mum cries, holds onto me and begs me not to leave her. Today, when I went out, she went outside into the garden and started shouting "help!" so loudly that several neighbours came out to help the sitter. She refused to go in the house so in the end one of the neighbours called me and I went back home. I really need these breaks and feel that if I cannot leave the house I will not be able to continue caring for my mum long term. She even follows me from room to room around the house and just wants me to hold her hand a lot of the time so that I cannot get meals etc. People tell me to be firm with her and not to give in to her as she is using emotional blackmail to get me to be with her, but now she has dementia I feel guilty when I try to set some boundaries just so that I can have some time to get jobs done and have some time away from her. She has always been quite clingy to me (I am an only child and we have no other family) so I do find it difficult not to feel suffocated at times. I also worry that if she will not accept anyone else but me, she will never settle at day care centre (where we are trying to persuade her to go at present) or agree to go to respite-and I dread to think what will happen if the time comes when she needs to go into a home!

Has anyone had experience of this kind of problem? I would be grateful for any advice.
Dunkery

 

[Anna_1988]

Hiya hun, sorry to hear you are having a bad time at the minute. My mother used to be pretty much the same - only child and just us so relied on me alot.
I found when the time came for her to go into a care home, to begin with, she was unsettled as constantly asking for me. After a few weeks I realised that this clingyness was more for her a sense of safety - a recogniseable face that she knew meant she was ok.
Since this I have put up photographs of me in her room along with my children.
Maybe when she has a sitter come around could you arrange a photograph book for your mom to tell the sitter about, memories of the past may keep her calm if she is able to do this xxxx

 

[dora]

Yes, they can

MIL was very manipulative. We were lucky enough to have a good CPN (community psych nurse) who was able to give us an independent view on this - it's easy for carers to make excuses for the person with d - and encouraged us to take a stand on this. I'm not going to pretend this was easy.

Do you have anyone independent such as CPN or SW who can help you?

Hoping you can find a way to keep some time for yourself - you need that to keep on caring.

Best Regards
Dora

 

[Butter]

I think we can all be manipulative - I am not sure dementia has anything to do with it.

 

[Dunkery]

Thank you Anna_1988. I will definitely follow up your suggestion of a photograph book and thanks too Dora. I felt rather guilty for even suggesting that mum's behaviour might be manipulative, but I have to say that usually when someone else is here and I have gone, mum is usually much better. I will phone our CPN tomorrow and tell her how things have deteriorated. I have an appointment at the hairdressers on Friday and your comments have encouraged me not to cancel it-I do know that each day is different so hopefully things will be better!

 

[SallyPotter]

Hi Dunkery
I think 'manipulative' is the wrong word, they just want things to be as they feel they should be (in their minds) or believe things are as they should be for them. When I visit my mother in the NH she likes to play the 'lady bountiful' handing out favours at her will, its not reality, just whats real to her.
Shes always been 'bloody minded' (in past years she'd have agreed) now she forgets the unpleasantries... Frustrating for the rest of us!

 

[sarahp]

Hi there

My mum is exactly the same. She follows me everywhere too.

I put this down to relying on you for there memory and as has already been said a form of safety because she relies on me for everything. She leans on me as a crutch i suppose. When anyone asks her a question she automatically looks at me for the answer. She came out with me and my sister and cried when I was out of sight.

I completely understand how you feel and how suffocating this is. Although my mum is happy to be left with my other half. But now she can't cope when he is at work. She cannot rest unless we are both with her to some extent. If she is with me she constantly asks where he is and vice versa. We never get anytime to ourselves but at least I can get some respite the odd evening! I also wander if they feel if you are not there they may forget you because my mum also panics when her cat is out and needs me to remind her what he looks like. I think they are just trying to hold on to your memory. That's how I see it anyway.

Have you tried day centres and at first staying with her and slowly leaving step by step? Sarah x

 

[stanleypj]

I think we can all be manipulative - I am not sure dementia has anything to do with it.

Thank you Butter. In a nutshell.

 

[Hair Twiddler]

Have you tried day centres and at first staying with her and slowly leaving step by step?

Good thought -leave your mum with a handbag of yours too = one that you will be back later to collect - a comfort blanket of sorts.

 

[sarahp]

Yeah I hadn't thought of that I'm going to try that when I go next to leave my bag with her.

 

[Dunkery]

Thank you for all your words of wisdom. It has help me to get things in some sort of perspective. I agree that is it all to do with mum feeling safe and feel rather guilty now at using the word "manipulative". She is using me as a crutch but also does not want other people in the house, even her friend of many years-probably because she is frightened I will take the chance to go out.

The problem is exacerbated by the fact she only has her medication to reduce anxiety in her drinks and when she gets anxious, she becomes convinced she cannot swallow and therefore will not drink anything so does not have any anxiety-reducing medicine-a vicious circle!

I too think the handbag idea is a good one when mum next visits the daycare centre.

I am blessed with many good friends-one has taken the dog out for a walk this morning.

Sally Potter-my mum has always been "bloody minded" too. Isn't it ironic that when so much of her personality has changed that still remains and that is some ways is a comfort, even though it is making life much harder!

 

[jaymor]

Looking for comfort I would call it. Wanting something or someone familiar.

 

[Pennie]

I remember reading a passage about this in "Contented Dementia" (a book that didn't suit my particular situation with my mother at all) but I think it was something along the lines of repeated actions which would eventually symbolise your activities e.g. there was a man who always read the newspaper and put it down on the sofa before going to the loo, obviously he said what he was going to do as well.

He was able to gradually lengthen the time he was away until he could get to his own room for a bit of a rest, something like that anyway, then when he came back he picked up the newspaper and was around, but as long as that newspaper was where he had left it his wife was alright.

All a bit like the build-up to getting young children who resist sleep to finally settle. Takes time but might be worth a try.

If I have the example wrong and anyone else knows that chapter please do correct me...

 

[Dunkery]

Thank you Pennie. It is also good to hear of someone else who bought the "Contented Dementia" book but found it of limited usefulness for my own situation as well. I will look for that excerpt though.

 

[CollegeGirl]

Hi Dunkery, please don't feel guilty at your choice of words. I think it's normal for most of us to wonder. Sorting out what is the dementia and what is a person's personality (possibly exaggerated by the dementia) is, I think, really difficult. I've often wondered if my mam is being manipulative or if it's something she has no control over. It's difficult to tell most of the time.

My mam is extremely clingy with dad and he has to do most things - cooking, shaving, gardening etc - with one hand while mam clings on to his other arm. I think it's one of the things he finds most difficult to deal with and unfortunately one which we haven't found an answer to yet.

Kind regards x

 

[LYN T]

Hi

I think this behaviour is down to anxiety/fear rather than manipulation (well in my Husband's case anyway). P used to follow me around ALL of the time-he used to get really anxious even when I went to the bathroom.It got quite dangerous at times when I was taking something out of the oven etc. I used to say that we shared the same shadow!

I found this stage very upsetting as P used to be so independent.Now he has passed this stage and appears to be more relaxed. He does follow the carers around in the CH but, bless them, they don't mind as they are glad that his legs are still working.

Take care Dunkery-who knows this stage may pass-and don't apologise for using the word 'manipulative'.

Lyn T

 

[Dunkery]

Hi CollegeGirl,
Thank you for your understanding. I really feel for you and your Dad and hope you can find a solution. My mum's mental health worker is consulting with her senior colleagues today to see if a change in medication will help. Meanwhile I am supposed to be going out this afternoon while the sitter is here and I am dreading a repeat of Wednesday-fingers crossed mum will be calmer today! Thanks again.

 

[Dr Sean]

Stop responding. Ignore her. Don't keep getting taken in. You've got stay strong. Cruel to be kind. She will soon stop.

 

[Lainey 127]

Hi, not much to add really except that my Mum is exactly the.same. If I leave the room for even five minutes she's yelling "Help me!" at the top of her voice. Lord knows what her neighbours must think.
It's a terrible strain; my Mum won't be left with carers either. However I am going to persevere because I need a break badly. I've just this week found a wonderful carer who has told me just to put my jacket on and walk out of the.door - she said she's seen it all before and will cope beautifully with Mum. I have confidence that the carer willl look after Mum so I'm going to give it a go.
She explained it to me; Mum is trapped 24/7 in a lonely alien world where nothing is familiar and every minute feels like an hour. She said it's like someone drilling into your head and you can't turn it off. Mum is scared, confused and needs the reassurance of having someone close to hand. She said when I've left.Mum with her once and seen her come to no harm, the next time will be easier.
Good luck!

 

[Dunkery]

Hi, not much to add really except that my Mum is exactly the.same. If I leave the room for even five minutes she's yelling "Help me!" at the top of her voice. Lord knows what her neighbours must think.
It's a terrible strain; my Mum won't be left with carers either. However I am going to persevere because I need a break badly. I've just this week found a wonderful carer who has told me just to put my jacket on and walk out of the.door - she said she's seen it all before and will cope beautifully with Mum. I have confidence that the carer willl look after Mum so I'm going to give it a go.
She explained it to me; Mum is trapped 24/7 in a lonely alien world where nothing is familiar and every minute feels like an hour. She said it's like someone drilling into your head and you can't turn it off. Mum is scared, confused and needs the reassurance of having someone close to hand. She said when I've left.Mum with her once and seen her come to no harm, the next time will be easier.
Good luck!

Thank you Lainey 127. I am sure you are right to follow your carer's advice. I did the same yesterday, when I went to have my hair cut. Whereas mum was terrible on Wednesday she was relatively calm yesterday and did not go outside, hit the sitter or shout for help (I too have had to explain to the neighbours I am not abusing her!) and I did just quickly go out the door saying that I wouldn't be long. I hope things get easier for you too. It sounds as if you have found a care with a lot of insight into this kind of illness. Good luck!