Inventing reasons to be distressed

[Jo Sutton]

Hi everyone, I could do with a bit of advice / hearing others' experiences.

Mum has delusions. Not at all uncommon with Vas Dem - she thinks I am still a baby and panics about where the baby is. Or she is on holiday in Italy and wants to go home. All the usual things.

And I have become quite accomplished at love lies and compassionate communication. Don't contradict, go with the delusion and find a way around it. So ... "Your parents are looking after the baby to give you a break", or "We'll be going home in a few days, so just enjoy Italy while we are here". I'm sure you all do it.

But lately, Mum's delusions seem to change as I find solutions to her distress, almost as if she is defending being distressed, or we are playing a game. Does anyone else have experience of this?

Here's an example:
Mum: "Where's my baby? She's only 6 years old, she can't cope without me"
Me: "She's staying with a friend - they are going camping for a week"
Mum: "But she hasn't got any clothes with her"
Me: "Yes she has, I packed them all before she went"
Mum: "But she's scared of the dark"
Me: "That's ok, she's got a torch"
Mum: "I don't trust the parents of the friend she is with"
[We haven't discussed who she is with, they are entirely fictional, so there is no way Mum knows whether they are trustworthy or not]
Me: "It's ok, Mum, I know them. You can trust them."
Mum: "But she has school tomorrow"
[It's a Saturday, so there is no way this would be true, even if the child existed]
Me: "It's the school holidays, so she's not missing school"

... and so on.

She seems to look for / invent reasons to continue being distressed, and I get exhausted trying to find reassurances for her.

It's not deliberate. I know it's the dementia, but it seems so calculated. Does anyone else have experience of their PWD continually finding excuses to be distressed? Does anyone know why it is happening or what I can do to get over it. Distraction doesn't work as whatever she is distressed about is an obsession and can last for days before she moves on to something else.

Looking forward to hearing from anyone with any thoughts on this.

Hugs

Jo xx

 

[Beate]

She seems to experience constant anxiety, and whatever you say won't comfort her. I don't think she deliberately invents reasons, just that the general feeling of anxiety won't respond to your reassurances. It might be time to see the GP to talk about medication.

 

[Slugsta]

Hi Jo, that sounds exhausting, having to keep coming up with reassurane b]no matter what you say! I wonder if, deep down, your mum is aware that something is wrong and her brain keeps find ing reasons for it?

I haven't been through this phase with mum, so I cannot offer any solutions but I am sure someone will come up with helpful ideas soon.

 

[Tin]

It has been like that with my mum and at times I felt that encouraging her delusions just made it worse and they become ingrained. So now when this happens I do a lot of nodding, yes and no, maybe tomorrow, I can no longer distract so I leave her be.

 

[Jo Sutton]

Thanks so much, everyone, for your responses.

That actually makes a lot of sense ... that she is just generally distressed and trying to find ways to express it, not necessarily distressed about the particular subject in hand. I'm not sure what to do about that, in terms of how I treat her to relieve it, but will try a few different techniques, with the cause in mind, and see if I can find a way around it.

Beate - I'm talking to the GP and Memory Advice about anti-psychotics at the moment, but they are reluctant and want to rule out everything else before they prescribe them

As Mum currently has a fractured elbow ... doctors are trying to avoid surgery as they know it will affect the dementia ... her CRP indicators are up and Memory Advice think it could be that causing the delusions. GP thinks it's the elbow that has caused them, and I agree as she has been getting steadily worse for the last 6 months.

So Mum is having blood tests to rule out infection, and we have a Memory Advice appointment next month, but for now they have taken her off donepazil (she only takes 5mg) to see if that helps. Fingers crossed. But if nothing helps, I'm going to press for anti-psychotics.

Love you guys!

Hugs

Jo xx

 

[mancmum]

Mother in Law is normal ..but

Sometimes you need to compare with the rest of the population. MIL is aged and does not have dementia ..however she does suffer with constant anxiety. E.g. Christmas dinner. "I'm not eating the christmas pudding. its got nuts in it" OK well just leave the nuts. 'Ah but once someone died from eating nuts when they choked because they threw them up in the air and caught them in their mouth". Are you going to throw your nuts up int he air and catch them. "No". Well you can eat the pudding then can't you.

Once we have stopped her worrying about this, then she will go on to something else. She also transfers this worry to other people. E.g. stopping the cleaner doing the cleaning because she is only little and the hoover is too big for her to push.

Obviously her anxiety is crippling and at an extreme state for someone who does not have dementia.

However sometimes you can stop her in her tracks by having a real problem. Sometimes then she can be quite sensible.

Can you have a real problem? Can you deflect the behaviour by channelling worry into something else, even if its only ...whats good for a picnic, should so and so on whatever soap do xyz. I dunno...anything's worth trying.

 

[Just me]

Hi Jo, sometimes I have this with my Mum. I know everyone says go with the flow and enter their world but I find this can fuel the anxiety. I sometimes just sit with her, hold her hand and keep repeating, don't worry, it will be ok. It does seem to calm her.

 

[Marcelle123]

I went in to the care home this week and found Mum sitting in her room. She kept saying she was 'scared' but wouldn't explain why. I said two or three times that there wasn't anything to be scared of - but I'd actually come to take a lamp out of her room and replace it with a fan (to be PAT tested). So after a few minutes, I explained that I needed to take the lamp down to the car and would be back in a few minutes. When I came back, there was no further mention at all of being 'scared' and her mood seemed quite okay.

It crossed my mind at the time that it was something to say to get my attention or keep me with her. But who knows? I was just glad the mood disappeared.

When things have happened like this in the past, I've found that reassuring Mum can make it worse & lead to her arguing with me about the non-existent problem, so now I prefer ignoring it or distracting her.

 

[Scouts girl]

I am finding it now so difficult to communicate with my mum who I think is reaching the late stages of VD. I just cannot reason with her and whatever I say to try and reassure her does not make any difference to her anxiety and frustration. She has not settled in her care home, is still very unhappy and gets very agitated at times. She has been hallucinating of late, saying that there are boys and babies in her room at night and saying she is scared on her own and cannot understand that there are staff caring for her 24 hours a day. She has been diagnosed with an infection recently but has had a repeat blood test as the first one was inconclusive so I am assuming that the infection is exacerbating these hallucinations and confusion. I have no concerns over the care she is receiving in her care home and just think that it is this awful illness that is making her so unhappy and agitated and hopefully when we can sort the infection she will start to feel more relaxed. It is just hard to know how to communicate with her. If I agree and say I understand how she feels, she gets upset and angry with me and says that I don't care and must do something to make things better. If I say there is nothing to worry about, she is safe and there is no need to be scared she reacts the same way. Please any advice on how to calm these situations would be appreciated as I just dread my visits to see her now knowing that I am just going to have to sit and listen to her anger and frustration. Mum also says that she doesn't feel part of the family anymore and we just wanted to 'get rid' of her. This is all so hurtful as all her family are close by and visit her often. I know it is not the same as having her at home and I do understand the torment and upset she must be feeling but I just cannot reassure her that we still love and care for her and just needed her to be safe and properly looked after which I couldn't do anymore at home.