• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can access this area by going to the Health and wellbeing forum >here< or you can directly access the area >here<.

Now whose confused?

Green Granny

Registered User
Feb 18, 2011
5
Surrey
Husband is also denies physical problems and sometimes it is potentially dangerous. On hospital visits he has denied having TIAs and heart attacks have been described by him as "spasms". When it is the same hospital they have his notes and it doesn't matter so much but two heart attacks happened when he was away.
Also having contacted social services for help, explaining the difficulty he has having a bath and also going upstairs I had to watch him sprint upstairs like a teenager rather than his usual stopping on every step. I have had a shower put in but he has told everybody he doesn't need it.
And like others he can be the life and soul of the party so everyone thinks he's fine - and then I have to pick up the pieces later. I wish I could be more understanding but just finish up thinking it's not fair!!
 

dunlin

Registered User
Jul 18, 2014
32
Both my parents do it!
Both are masters at it, one will complain to me about a 'trouble', take them to the doctors, suddenly it's not nearly as bad.
Same with being assessed for care........
Neither of them see the stress it puts me under........
She will ring me middle of the night with breathing difficulties.....to the point where Ive called out an ambulance.....paramedics arrived and suddenly it's my fault for over reacting and shes fine.
But they still took her to hospital and she was in for a week.....that's how bad she was trying to cover up her illness to them
So glad I called them!
 

France-Lise

New member
May 30, 2019
6
Yes I have you feel like screaming at them.because they don't see the full picture..so frustrating
My sister, a widow with no children, who has been in denial over her disease for a year is often in a 'hosting' mood, mainly with friends. One woman and her husband were convinced that she did not have Alzheimer's disease. I could not understand it but I found out that they had a special motive. I rang them and they told me that they were ready to put her under 'guardianship' via their daughter who is a lawyer to protect her from us (my other sister and I) as she did not have Alzheimer, we did not get her to see the right doctor, we put a device on her phone to listen to her conversations, we were not looking after her properly, etc... lots of absurdities which made the carer, a very nice and competent lady, very upset. We told our sister what the friends' daughter was going to do and she refused, for the moment, to give power of attorney to any of them. These friends/foes did not want to see 'the full picture' as quoted above! A hosting mode can be dangerous!
 

Owlone

New member
Oct 17, 2018
9
I have had similar experiences with my husband, whenever we have gone to supper with friends, or visited a friend, or are in a new social situation, my husband behaves in a completely "normal" fashion and people comment to me how "brilliant" he has been, and I get to feel as if I am making everything up. He's had Alzheimer's for over 2 years and is starting to jumble past memories now. At a recent visit to the doctor, he did not know how old he was. I don't quite understand the capacity to "rally" and then to later subside into complete forgetfulness and confusion.
 

fluffydog

Registered User
Jun 4, 2014
17
I have had similar experiences with my husband, whenever we have gone to supper with friends, or visited a friend, or are in a new social situation, my husband behaves in a completely "normal" fashion and people comment to me how "brilliant" he has been, and I get to feel as if I am making everything up. He's had Alzheimer's for over 2 years and is starting to jumble past memories now. At a recent visit to the doctor, he did not know how old he was. I don't quite understand the capacity to "rally" and then to later subside into complete forgetfulness and confusion.
My husband is the same when out having a meal with friends he seems to be fairly normal, but at home he repeats the same thing over and over again, we don't have a meaningful conversation at
 

Finonie

New member
Sep 3, 2019
3
I’ve just taken my husband to his annual dementia review. It was a twenty minute session with a nurse at our GP practice. I would say that my husband has all the elements of stage 5 dementia with occasional stage 6. He walked into the surgery, took his jacket off by himself and proceeded to behave in a completely ‘normal’ fashion. He told her that he has no trouble with his sight or hearing, that his mood is good most of the time, and that he’s never disoriented or lost. He did admit to having trouble sleeping at night. He rolled his sleeve up to have his blood pressure taken, responded appropriately to being asked to stand against the wall for his height, and got on the scales without being asked to twenty times and being shown how to do it. I felt like screaming. I wanted to tell her what I see on a daily, and hourly basis, and it isn’t that! Has anyone else experienced this?
 

Finonie

New member
Sep 3, 2019
3
I feel SO much better reading this thread. My mum (who lives with me) has mixed dementia, and she is deteriorating; short-term memory is long gone. Night wandering is becoming a problem (not easy to manage when you as carer are a working single mum 🥺). And yet my mum can turn her smarts on for a wee while whenever a professional is around! I had no idea it had a name but hostess mode makes absolute sense. Glad I joined this group, I’m finding support is scant and managing everything is getting really hard. Nobody gets it.
 

canary

Registered User
Feb 25, 2014
11,597
South coast
@Owlone @fluffydog and @Finonie - this ability to suddenly be able to appear normal in front of family members that they dont see often, medial staff and other authority figures is well known on here. I dont think it has a technical name, but on here it is know as being in Host/Hostess Mode. It seems to be an unconscious response and I suspect that it is a throwback to a primitive survival instinct to hide any weakness or you would get thrown out of the pack, or lose your position on the branch. It takes a lot of effort for them to do this, so they cant maintain it for long and it leaves them really tired.

What tends to happen is that relatives come to visit, your person with dementia goes into host mode and just about maintain it for the time they are there, so the relatives think that you are exaggerating. They then leave and you have to deal with the fall out because the person with dementia is super confused and grumpy, because they are tired. You also have to deal with the relatives saying how wonderful he is and so much better than they were expecting.

Its very annoying
😡
 

Wirral Guy

Registered User
Jul 9, 2016
1
Your message certainly rang bells with me, and I do sympathise. I'm sure no one but me realises how confused my wife is - but I can't possibly say that to friends or relatives as it would sound so self-pitying - and that is just not on. I guess we just have to grind our teeth in private.

You mentioned the "stages" of dementia. After 4 or 5 years of talking to doctors, nurses and consultants, no one has ever used that term to me. Am I missing something? The only quantative measurement I know of is what I think is called the Montreal memory test, at which my wife recently scored 9/30. "And that's the last time we will do it," said the doctor. "When it gets below 12 it becomes embarrassing." And he is right! Out of interest, can anyone point me towards these "stages"? Best wishes to all.
 

canary

Registered User
Feb 25, 2014
11,597
South coast
Hi @Wirral Guy . When people talk about different stages of dementia it isnt a quantitative measurement, its a subjective description of how they are functioning. There are various descriptions - the 3 stage (mild, moderate and severe), a 5 stage and 7 stage. The 7 stage one seems to be the one that is most commonly used and Ive added a link. Do remember, though, that it is subjective, things may happen in a different order and the time line is only a guide
 

Mousehill

Registered User
Nov 28, 2018
55
What really shocked me was how unaware the care firm we used for mum was of this behaviour. They market themselves as being experienced in dementia care. We've got someone in now from an agency who have received specific training!
 

fluffydog

Registered User
Jun 4, 2014
17
my husband was diagnosed 6 years ago and i have never heard of these stages of dementia, he now has no real short term memory but thinks he has, he says i am being awkward as there is nothing wrong with him.
As others have said when relatives or friends see him for a very short time they seem to think he is not so bad really but they are not here 24 /7!!!
I have had to find out what help I can get by myself as help is not very forth coming I am seeing an adult help person next week to see if i can have a bit of respite for a few hours, I can,t believe that it has come to this that i need some space for myself and I feel very guilty as he doesn't know about it.
 

Banjomansmate

Registered User
Jan 13, 2019
1,594
Dorset
The Banjoman had Lewy Body Dementia and I found a really good website (Canadian or American I think) that gave suggestions as to the effects and stages of the disease. I found he was way behind in some aspects but apparently near the end in others and that was probably midway through his illness. Everybody has their own individual journey!
 

Poet1

Registered User
Aug 10, 2015
22
Thank you all. This is most helpful. I swither between evidence of slowly developing dementia in my wife (in denial) and 'normal' behaviour which makes me doubt my sanity and racks up my stress level again and again.

Thank you. Now I understand.
 

dbrilyant

Registered User
Sep 14, 2014
26
As a person with dementia I know what it is like to find oneself able to rise to an occasion! It is a little holiday from the condition. Please look at hostess syndrome with this in mind as well as your understandable annoyance!
 

Finonie

New member
Sep 3, 2019
3
@Owlone @fluffydog and @Finonie - this ability to suddenly be able to appear normal in front of family members that they dont see often, medial staff and other authority figures is well known on here. I dont think it has a technical name, but on here it is know as being in Host/Hostess Mode. It seems to be an unconscious response and I suspect that it is a throwback to a primitive survival instinct to hide any weakness or you would get thrown out of the pack, or lose your position on the branch. It takes a lot of effort for them to do this, so they cant maintain it for long and it leaves them really tired.

What tends to happen is that relatives come to visit, your person with dementia goes into host mode and just about maintain it for the time they are there, so the relatives think that you are exaggerating. They then leave and you have to deal with the fall out because the person with dementia is super confused and grumpy, because they are tired. You also have to deal with the relatives saying how wonderful he is and so much better than they were expecting.

Its very annoying
😡
Ha that’s so true and you feel like they see you as having a self-pity party. In another way it also excuses them-professional or personal-from taking any responsibility!
 

toodles

New member
Jan 8, 2020
3
Thank goodness for this forum. Me and my mum dread whenever my dad has to be reviewed/assessed as it always results in the same outcome whereby he performs all the requests perfectly and is engaging and determined. Afterwards the level of exhaustion he experiences is so much more heightened from these appointments and often can roll over to the next day. This can result in having tremendous difficulties getting food/drink/tablets into him which then has knock-on affect. Yet often when you explain this to people they look at you as if you are being totally unreasonable making you self-reflect that perhaps you are being unreasonable.
 

CherryP

Registered User
Jun 25, 2016
3
I’ve just taken my husband to his annual dementia review. It was a twenty minute session with a nurse at our GP practice. I would say that my husband has all the elements of stage 5 dementia with occasional stage 6. He walked into the surgery, took his jacket off by himself and proceeded to behave in a completely ‘normal’ fashion. He told her that he has no trouble with his sight or hearing, that his mood is good most of the time, and that he’s never disoriented or lost. He did admit to having trouble sleeping at night. He rolled his sleeve up to have his blood pressure taken, responded appropriately to being asked to stand against the wall for his height, and got on the scales without being asked to twenty times and being shown how to do it. I felt like screaming. I wanted to tell her what I see on a daily, and hourly basis, and it isn’t that! Has anyone else experienced this?
 

CatAM

New member
Oct 2, 2018
3
Fife
Such a relief to hear that this is a known problem. I feel like screaming every time my neighbour tells me that you would never know my husband has dementia! I think like a lot of friends and family she sees what she wants to see and what he wants them to see. Like others I just wish they could see what we live with.