what I see and what others see

[totallyconfused]

Its hard to explain day to day stuff. When my siblings come in for an hour here and there, she's in good form, laughing etc but its so hard to explain the rest of the time, the little things. They look at me like I am crazy.

Part of me thinks I should just keep it to myself now and let them see what they want to see.

I tried talking to her doctor about a few things Ive noticed and she just said we will keep an eye on it

It was as if to say why are you questioning this movement, or this memory loss. Its the disease!

Its so hard to know is it the tablets or the disease?

 

[marionq]

Can your Mum go for a weekend to your sisters? Or can they come and live at yours to give you a break? If you want them to see how it really is that is the only way.

 

[totallyconfused]

Can your Mum go for a weekend to your sisters? Or can they come and live at yours to give you a break? If you want them to see how it really is that is the only way.

in the 4 years since our dad died, she has been in my sisters house about 5 times, max time an hour, sometimes less.

another sister moved in with her last year. not once did they offer to collect her in the evening, cook dinner, watch a movie or something and bring her back the next day.

the odd time they bring her for a cup of tea and a scone.

considering for 4 years, they have told me Im bullying her, controlling her and her moods and so on, you'd think they would want to get her away from me as much as possible!

 

[canary]

Its hard to explain day to day stuff. When my siblings come in for an hour here and there, she's in good form, laughing etc but its so hard to explain the rest of the time, the little things. They look at me like I am crazy.

Its called "hostess mode" on here. When they feel the need people with dementia can sort of pull themselves together and appear almost normal. But it takes a great deal of effort and they can only sustain in for a couple of hours max. After that it starts to slip, so if your family are only seeing her for an hour or two they will have no idea what its really like. It also often leaves them worn out, grumpy and more confused afterwards.

Its a very annoying phenomenon

 

[nae sporran]

in the 4 years since our dad died, she has been in my sisters house about 5 times, max time an hour, sometimes less.

another sister moved in with her last year. not once did they offer to collect her in the evening, cook dinner, watch a movie or something and bring her back the next day.

the odd time they bring her for a cup of tea and a scone.

considering for 4 years, they have told me Im bullying her, controlling her and her moods and so on, you'd think they would want to get her away from me as much as possible!

It's taken about 4 years to convince OH's daughter how much of a rollercoaster dementia is with her being in good form at lunchtime and confused a couple of hours later. Her son, like your siblings was not interested when I tried to send her to his place for a weekend's respite last summer.
Doctors are a bit like that, though persistence has been rewarded with a couple of referrals recently after finally getting both the diabetes nurse and the GP to investigate.
Sorry totallyconfused, it is bludi hard work.

 

[Kevinl]

As canary says it's called "hostess mode" on here and it's a right pain in the bum.
People seem to thing you're exaggerating their condition, my answer was to film on my phone some of the nastier outbursts and showed it to my brother, worked for me as in he then agreed we shouldn't let my mother go back home even though that's what she wanted. He stopped agreeing with her and sided with me and she then accepted it.
K

 

[totallyconfused]

that's what it feels like. They come in and I swear, the difference in her! They leave, the tiredness and attitude sets in and the stuff she says to me in those outburst! Or the severe depression is just as bad.

It is hard work!And very tiring!

Today, she was in such high spirits with them, came in to my room bitching about them being here, tears in her eyes and then she goes back down all smiles and starts chatting with them again?

Ive tried again and again to explain this to them, they think I am making it up.

 

[Otiruz]

If it's any consolation my mum is able to switch from 'hostess' mode to dementia mode in a sentence. i.e. carer asks mum if she would like a cup of tea, mum smiles very politely and answers "yes please" then turns to me and snarls "when are we going?". Sometimes the only person near to the sufferer gets to see the 'real' dementia person.

 

[Linbrusco]

It's for this very reason why my sister, who agrees with the fact that mum has deteriorated since Christmas, still doesn't see the day to day issues that I deal with, and refuses to believe that Mum is no where needing Respite care let alone permanent care.
There is nothing I can film, nor nothing I can tape easily because as you know the world of dementia is unpredictable. Hard to do this covertly
It's the relentless toll its taking on me, affecting my family and the resulting stress on dad.
and don't get me started on Mums siblings who see her for about 2 hrs max every couple of months Mum always seems to put on best efforts other than being a bit confused and repetitive.
As my parents live behind us, even my 2 teenagers have more of an awareness of how their Grandmother is.

We have now been advised to have a best interests meeting as Mum had a recent assesment, and is now deemed as not having mental capacity.
The report does not make for good reading, so maybe my sister might sit up and take notice.

 

[irismary]

My sympathy and i know just what you mean. OH is really good when people are here but when I am on my own with him he is not good. First thing on a morning he won't get up and doesn't want a wash etc. Because he is happy when others are around they assume he is like it all the time but he isn't - he isn't nasty just not as good. They think I am exaggerating his condition and because they have been on a seminar they know all about it. So frustrating.

 

[kat57]

seeing what they want to see

I totally understand where you are coming from, as the eldest of 6, I have found for the last two years I am on my own looking after mum. I am in tears most of the time when I come home and have to put up with my youngest sister telling lies, yet she cannot visit and see what I have to put up with, I think she see's what she wants to, avoiding any responsibility for our mum. Mum is currently starving herself, I don't know if its deliberate or part of the dementia.
It would be easier to drag a horse to water than get any support from family.

 

[totallyconfused]

I totally understand where you are coming from, as the eldest of 6, I have found for the last two years I am on my own looking after mum. I am in tears most of the time when I come home and have to put up with my youngest sister telling lies, yet she cannot visit and see what I have to put up with, I think she see's what she wants to, avoiding any responsibility for our mum. Mum is currently starving herself, I don't know if its deliberate or part of the dementia.
It would be easier to drag a horse to water than get any support from family.

Im so sorry. We must just follow our gut instincts although I find myself doubting myself because my siblings think everything is fine but now, Im sticking to what I see and what I think is best, especially during the day when they aren't here.

they would get the shock of their lives if they had a week alone with her! They would never offer though and my mother would say no.

 

[JohnBG]

Home Alone.

In truth we know what it is like, that transition from traits to other nuanced symptoms will initially be hard for others to envisage. My mother's GO asked her the six questions, at an initial assessment which she seemed all together. Only at the home visit where she was more relaxed did she start to assume confusion, once started that repetitive sentence was something out of Ground-hog day bless her.

Not everyone will understand, once you put yourself in the position of carer, why would your siblings want to know, you are doing it all, so they do not see a problem. One option is to step back that is very hard when your Mum may feel frightened isolated or confused.

Look after yourself, get the support encouragement plus resolve to stay well yourself, the more of those who are part of the team come with opinions or suggestions that are less than helpful, although my dear sister died we would have shared this role, so now I have control, so you are doing your best be kind to yourself.

John.