Is it just me....

[Bris_Girl]

Hi everyone.

I'm new here but after living with my Gramps for over 2 years now I feel I need somewhere I can talk to others in my situation.

I was just wondering if anyone else has experience of the PWD seeming much better when people are visiting? I find it so frustrating that my family come over and spend a few hours with Gramps and leave saying how good he seems when I spend so much time thinking how much worse he is!

I am in a fortunate situation now that we have as residential carer with us full time as I am in full time work and could now cope with that and the constant getting up 4/5 times overnight.. but I still don't think they see how bad he is getting!

 

[Amethyst59]

Hello, and welcome @Bris_Girl. What you describe is so common, it even has a name: host or hostess mode. The person makes a monumental effort when other people are around, and as soon as they go, the effort has tired them so much, that the symptoms of dementia can seem much worse. Last week my husband (who has dementia) took my breath away when he discussed molecular design with an old friend. For two or three days afterwards he could barely remember who I was.
I am so pleased that you have managed to get a residential carer, they can be so hard to find. Please do continue to post, if you have any questions or concerns, the members are so welcoming and supportive.

 

[DeMartin]

Oh yes, it’s called host/hostess mode. A PWD can gain the wherewithal to appear “normal” for a short while. They can be smiling, appear chatty, and behave totally appropriate.
It seems to take a lot of strength because when the visitors/visit is over they they revert to their previous behaviour.
Family think you’re exaggerating, doctors and social workers can be totally fooled.
Writing at the same time as Amethyst59.

 

[Hazara8]

Hi everyone.

I'm new here but after living with my Gramps for over 2 years now I feel I need somewhere I can talk to others in my situation.

I was just wondering if anyone else has experience of the PWD seeming much better when people are visiting? I find it so frustrating that my family come over and spend a few hours with Gramps and leave saying how good he seems when I spend so much time thinking how much worse he is!

I am in a fortunate situation now that we have as residential carer with us full time as I am in full time work and could now cope with that and the constant getting up 4/5 times overnight.. but I still don't think they see how bad he is getting!

Behaviour and stimulus stem from environment and dementia picks up on that and people's behaviour at the moment. As visitors to the Care Home bring about 'changes' seemingly in family members (residents) suggesting they are on form, whereas a few hours earlier there was pandemonium. This is why the 24hour person-centred care which takes place in the home is witness to the whole story, in terms of presentations in dementia and not just a 'snapshot', which family members so often are party to and thus are for the most part quite ignorant of the facts. This is the quite pronounced difference between total care and spasmodic care. I can think of many instances of a calm and collected interaction when family members visited my mother at home, yet the evening came and I was alone with her and things transformed into a completely different state of affairs. This is dementia and its progression brings about all manner of surprises, many of which are, alas, neither pleasant nor invited.

 

[kindred]

Behaviour and stimulus stem from environment and dementia picks up on that and people's behaviour at the moment. As visitors to the Care Home bring about 'changes' seemingly in family members (residents) suggesting they are on form, whereas a few hours earlier there was pandemonium. This is why the 24hour person-centred care which takes place in the home is witness to the whole story, in terms of presentations in dementia and not just a 'snapshot', which family members so often are party to and thus are for the most part quite ignorant of the facts. This is the quite pronounced difference between total care and spasmodic care. I can think of many instances of a calm and collected interaction when family members visited my mother at home, yet the evening came and I was alone with her and things transformed into a completely different state of affairs. This is dementia and its progression brings about all manner of surprises, many of which are, alas, neither pleasant nor invited.

Ohabsolutely, thank you. I visit my OH every day in his nursing home and spend several hours there each time, so I see a lot, and a lot of repeated patterns. So agree with what you said. Thank you.

 

[LouBear]

Hi @Bris_Girl

I'm also new here and too live with my granddad. He has vascular dementia - diagnosed almost 2 years ago. Thanks so much for posting, I can really relate to the experience you describe.

I'm finding my granddad's moods quite challenging at the moment. He has long periods of negativity and the topics that he covers almost limitless and completely unrelated. I find it challenging because as soon as the carer or the neighbour or another visitor arrives, granddad is so pleasant and alert, he's like a completely different person...and as you have found also, people see him as being on great form. As a result I find myself questioning whether I've imagined his previous behaviour but as soon as they leave, he goes back to the way he was before they arrived.

He also sleeps so much lately, I don't know whether this is his age or whether this is something to do with his condition...or maybe a little of both. We are not due to go back to the dementia doctor until August so I'm spending a lot of time questioning and guessing almost.

 

[Bris_Girl]

I feel so much better reading what you have written!!! LouBear my Gramps sleeps a lot as well. I have to laugh though because he will wake up and tell me I have slept through whatever we are watching on TV!!!