Difficult and strange behaviour

[Daisyjm]

Hello to all,
It has been some time since I posted, I wanted to ask about strange personality behaviour with dementia.

My dad is still very active, pottering in the garden etc. still doing everything he’s always done, his memory is getting worse and his speech is going a bit.

However, at times his behaviour is really bizarre. Sadly, I’m finding that he is not that interested in me or his grandchildren anymore, certain people who he’s always put on a pedestal, he’s still interested in, which is so hurtful, but he just wants to be with my mum constantly.

I know my mum finds this very difficult and suffocating. He just won’t let her go anywhere, even into a different room, and if she wants to go out, he starts to become difficult and puts on this awful poker face, like a child. It’s very controlling really, which he always was quite controlling.

If his grandchildren have done something, he runs to tell my mum to try to get them into trouble or he’ll try to start an argument by complaining about me or my children to my mum. It’s like I’m not his daughter, but a threat and someone to compete against.

I overheard him the other night telling my mum, the only family he needs is her, he doesn’t need anyone else, just her, she shouted back that she doesn’t want that, as she loves all of her family.

I’m finding that I’m starting to at times find him him manipulative and also, how he can control and manipulate situations, if his brain is meant to be deteriorating?

It’s like he knows what he’s doing and wants to cause as much trouble as possible. My poor mum is finding it so difficult with him, she misses the conversation and going places. He doesn’t want to go anywhere and wants to keep my mum a prisoner. I’m really worried about my mum developing dementia, through lack of socialising/stimulation.

I feel awful to admit that sometimes I really dislike him. Then I keep telling myself it’s not his fault. However, he’s always been difficult and a trouble maker, it’s just intensifying.

I suppose I’m feeling this immense anticipatory grief but mixed with anger.

So sorry to be negative! It really is so hard ☹️

 

[Kevinl]

Tell me about it! I couldn't close the toilet door, soon as my wife couldn't see me she had a panic attack.
I had to take her everywhere with me, we even had to shower together, still hard as it was I'd do anything to have her back.
K

 

[Daisyjm]

I’m sorry Kevin about your wife, it must be so frightening for the person with dementia.
It sounds like you were such a loving and caring husband.

 

[canary]

Hello @Daisyjm

Your dad has reached the stage of dementia where there are now two things going on, that often start at about the same time

One is that he has lost empathy. He is unable to see things from anyone elses viewpoint. His world has narrowed and narrowed and now can only see his own wants needs and comforts and is probably completely unaware that other people have wants and needs of their own. Once people reach this stage everything becomes about them and they have to be at the centre of all activity. Many people think that other people are talking about them, even if they are complete strangers; they dont like people around having conversations that dont include them and cannot understand why other people would want to do things that do not include them.

The second thing that is happening is a symptom known as Shadowing. The person with dementia becomes afraid of being on their own. They need someone to direct and reassure them, so they latch themselves onto their main carer, who becomes their "comfort blanket" and they want to follow them around all the time so that they can keep them in eyeshot every moment of their waking life.

So, you see, your dad does only want your mum - he wants her attention directed to him all the time in order to keep the fear at bay. He is unable to understand that she might not want this (it wont even occur to him) and yes, when others take her attention away from him he does indeed see it as competition. It is, to him, basic survival and he no longer has any empathy, so he will do everything he can to keep her undivided attention. If something works, he will repeat it and the loss of empathy means that he is no longer able to see that it looks like manipulation.

Although it is good for your dad, it is not good for your mum. I agree that she needs a break and to be able to meet her own needs. Your dad needs someone else who can come regularly and be there just for him so that he can accept them and allow your mum space. It will not be easy and will take time to build up a relationship, but your mum will need it. If no-one in the family can do this, then talk to her about befrienders or sitters who could come in regularly.

 

[Remotecarer]

So sorry to hear about this and others have already posted excellent advice.

A couple of other thoughts if I may. First, the brain won't deteriorate at a steady state or evenly so yes, your dad's manipulative side - which he sees as self-preservation and survival I'm sure - could well be razor sharp while he can't remember a conversation from a few minutes ago.

Second - and this is easy when it's not my dad - try to remember that when you're disliking him you're actually disliking the illness, not the person. Loads of us have negative things flashing across our minds in situations and we dismiss them immediately. Your dad is losing that filter, I suspect. It genuinely isn't his fault - and nor is it yours when you react to a side of him you've never liked and which is coming more and more to the fore.

I'm not sure I've helped but I hope that adds a little perspective. Take care.

 

[Sarasa]

@Daisyjm , I think dementia highlights a person's underlying personality My mum was always a tough assertive woman but before dementia struck she'd get her way with charm. As her dementia progressed she became more and more aggressive and the charm went right out the window.
I think you need to just accept that your dad now just wants your mum and try to find ways to support her so she isn't totally overwhelmed by it all.
I wonder if this will help you find some support for your parents.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

 

[Cardinal]

In addition to everything @canary said my husband’s neurologist explained that for many people with dementia as they lose their own memory they look to their main caregiver to become their memory. So when their main caregiver is not in sight not only is the person who takes care of everything for them not there but their memory is not there.

Your mom needs regular breaks from your dad. There are great suggestions on this sight on ways others have managed this.

 

[Skylark/2]

I so identify with what has been said here.
My husband has always been controlling and short tempered, more so now he has Alzheimer’s. I have had a few ‘ nasty ‘ incidents with himrecently which I reported to the memory clinic. A nurse came out the following day and suggested an antipsychotic drug plus sleeping tablets. We have only just started them so no difference noted. I have to say our memory clinic have been fantastic, since the incidents they have phoned everyday to check how things are. They also reported the incidents to the safeguarding team who phoned me 2 days ago. The phone call went like this, is your husband known to the mental health team at the hospital? ‘ Yes’ Are Social Services aware ? ‘ Yes ‘, Are you registered with local Carers Support? ‘ Yes ‘ Well you seems to have everything covered so we will discharge you unless we hear from you again. Words fail me.
We have our son and his family staying nearby for Xmas. He is unsure who they are, doesn’t have a son or granddaughter sometimes, not always. They are spending as much time as they can with us, husband doesn’t like me paying them attention, playing with our granddaughter etc., He shouts at me from another room, demanding hugs and kisses. Now he has started shadowing me, I feel suffocated, doesn’t want me to go anywhere without him. Doesn’t want to go dementia cafes, just wants the two of us to be together 24/7 365 . It is becoming impossible
I could write a book ( as we all could) on how unbearable at times caring for someone with dementia and once Christmas is out of the way, I am seriously looking at care homes, thought I could manage I can’t.
To all who uses this forum, I wish you a peaceful, possibly stress free Christmas and stay strong.

 

[HazelT]

I so agree with all that has been said so far. My husband has no empathy now and is starting to shadow me and hover when I am doing things, Usually right in the way! He cannot see that we need to put things in place when we go away as he has a morning incontinence problem. He just can’t make it to the toilet in time and sometimes tries to do other things first, like opening the curtains. I have bought some pull on pants and a urinal for going away this Christmas and at first he seemed quite accepting but now says he doesn't need them!
Like you said he also picks fault with the grandchildren which is not pleasant. Lack of empathy is very hard to bear.

 

[Daisyjm]

Thank you to all for your replies, it really does help to have other’s experiences and to be able to explain things. I have no one to talk to about this, and the feelings that arise from the cruelty of dementia.
Therefore it so helps to come onto this forum, to read about others situations, gain advice and ways to get through the bad days.

Skylark, my dad also becomes very jealous when my mum talks to my children or me. He’s been like this for years with me (not liking me talking to my mum) even before showing signs of dementia so it’s no surprise, but he always doted on his grandchildren and therefore it’s even more harder to accept. The comments above help to explain how he’s feeling though, and why this maybe occurring.
There is absolutely no way he would allow a stranger to come into the house to give respite for my mum, I will sit with him and talk to him whilst she goes out for a bit. (We live next door) He seems ok with this sometimes, sometimes not!
He has always been like this, he always found it difficult to make and keep friends because he’d end up falling out with them.

Wishing everyone a peaceful Christmas 🙂