How is it that other people's perceptions are so different to mine?

[Muttimuggle]

When I told my brother that his dad had dementia and needed some help, he turned his back on me and started talking to his dog. He might have just as well stuck his fingers in his ears and sung 'Ting a ling a loo'

Yes, and that was an interesting observation you made and your analogy! I potentially see an element of this in my, often aggressive and bullying, older brother.....but then, that is me trying to be an amateur psychiatrist probably. Difficult happenings in our lives can make us all revert to childhood emotions and coping strategies, I think. However, we have a responsibility, as adults, to check ourselves and those reactions, to rise above and do the right thing even though it is painful.....and I feel like this is making me out to be "Mrs Perfect" now but I am not, and far from it! (Think I better go off and check my own reactions to stuff now!)

 

[Agzy]

Hostessing we call it but I prefer te American, ‘Showtime,’ as without a doubt they can put a show on that defies all we caregivers know and live with and yes, makes us enemies in the eyes of others and usually relatives who keep their distance most of the time.

 

[Hazel 1944]

its called host mode and basically they try to keep up appearances for those that dont see them very often. my husband can do it but only temporary until they go then he is very tired and will sleep for quite a while afterwards. i dont think your mum is deliberately doing anything.

Thanks for name *host mode* as it makes a lot of sense. My husband needs his sleep after such efforts.
I quite enjoy the exchanges and appreciate his ability.ong may it last.

 

[Jan P]

My husband is now in a care home as he became too much for me to cope with.
When he was at home people would say to me, he is ok, but I knew he wasn’t. You end up wondering if it is you being feeble and imagining thing, it’s very hard. He then had a serious fall which caused a bleed on brain, and within a day he was sent to the Psychiatric hospital for rehab,
And the whole team there told me it took all of them to cope with him.
He is now in a specialist Dementia care home that are really wonderful to him, but it’s taken a year for them to understand him.
I still wonder should I have tried harder, so much guilt and emotion involved, but I know he is in the right place.
You know yourself how things are, try not to let other people influence you

 

[Siegrune]

My mother is in hospital recovering from a fractured neck of the femur. My husband and I went in yesterday which was a week after her op. She has been more confused than normal but there has been a slight improvement at this stage....but she is still cognitively worse than is normal for her. She is not doing much physio yet, only a little with a ward therapist. I am hoping she will go to a rehab centre when she leaves the hospital.

My older cousin, who is about 10 years younger than my mother, went in to see her today. She used to be a nurse. This is the first time she has actually seen my mother since some time before the pandemic began and before Mum actually got her diagnosis. I have told this cousin that my Mum now has dementia and things have been hard. Before she visited today I told her that Mum was more confused than normal. This cousin reported back to me tonight to say that she stayed 2 and three quarter hours with my mother and was able to help her in many ways and even got the nurse to find a wheelchair to get her to a toilet and that she is fine and wasn't confused at all!

Apart from the fact that my husband witnesses what I witness and agrees with what I see about my mother's confusion, I would feel like I am going quite mad. Why is it only me(and him...and our son) who see it? Could she be only doing the dementia confusion for me, for us? It makes me feel judged for saying that my mother has dementia - that awful daughter who keeps making out that she is worse than what she is.

Sorry this is a bit of an emotive rant. I will say that I have had somewhat of a rest whilst my mother is in hospital - which is my guilty but honest truth. Before this fall, and breaking of her femur near the hip, I did not visit my Mum all of the time but it had become approximately every other day, more recently virtually every day to sort something out. However my connection to her, my being on duty is constant....in terms of responding to her problems, communicating with the care agency, taking her for appointments, going to make a shopping list(because she now get's confused making it), then getting her shopping, speaking to her GP, getting her blister packs amended, taking her for coffee or lunch sometimes. I do it out of duty and to alleviate my guilt. My relationship with my mother has had some turbulent times throughout my lifetime.

Hi. I totally empathise as my husband regularly behaves very differently with other people, especially anyone with 'authority' than her does with me.
He speaks coherently, nimbly springs up stairs and denies having any physical or mental difficulty at all.
When he's with me the picture is totally different and I end up wondering what's wrong with me, to the point where I feel so confused that I'm not sure I can carry on.
It's very difficult and nightmarish. I'm sorry I have nothing helpful to add other than being sympathetic.

 

[Shedrech]

hello @Jan P
a warm welcome to posting on DTP
What a lot your husband and you have been through ... I'm glad you have the reassurance of knowing he's with people who are really wonderful to him
I guess we will all wonder, because we care and how we wish all was different ... we do , though, also know that we tried all we could and had the courage to acknowledge that we need help ... I agree, what others think and say is their thoughts and words, best left with them

 

[Shedrech]

hello @Siegrune
a warm welcome to DTP

'host mode' can play havoc with how others perceive the situation, and can really mess with your mind ... you know best how things actually are, you are faced with the reality, and you don't have the luxury of taking a show at face value

I hope you have some support in place ... at least you can come here and share your experience amongst others who understand, so do keep posting

 

[CatAM]

My husband went into a care home last year as an emergency, he became aggressive, was running away, forgotten who I was and and where we lived. He only lasted a couple of months there due to behavioural problems and he was moved to a specialist dementia unit in a hospital. I cannot praise their care for him highly enough. I get so upset when people ask if he's getting better or when is he coming home! Sadly that will never happen. You would never know anything was wrong with him, is another well used phrase. I really think that people only see what they want to see. People have no idea what is involved in caring for someone with dementia. The guilt and loneliness, and I include family in that. It is hard to believe that people have so little knowledge of this disease.

 

[Beady]

I think that you have to accept things as they come up. Your cousin went to visit your Mum which was nice, and your Mum performed well for her. See it as a good thing. My husband is much more prepared to do things for others, such as a bit of exercise, whereas he just laughs if I ask him to do it.

 

[France-Lise]

I am not surprised to read all these comments about host/hostess mode. I did not not know that there was a word for this problem. It was exactly the same with my elder sister who lives in France. She convinced some friends of hers that she did not have Alzheimer but that she saw the wrong doctor. These people were ex-scientific researchers at Lyon University who phoned me and accused me of taking advantage of her and her money, even installing cameras in her house, etc...although I live in the UK! Later on, a person who was not related to her, believed what my sister said and reported her to the French justice system, pretending she was her niece. This person got my sister under 'guardianship' with the authorities. Two years later she now has 24h carers staying with her and a legal representative looks after her money. She has never seen these friends again but my younger sister and me still come to visit her!

 

[Nice Debbie]

I've learned something new: 'host/hostess mode'. Sounds like this is a two-way thing - ie not just the visitor who doesn't see what you see, because they don't understand dementia, but also that your loved one makes a huge effort with people they don't see very much.
It's heartbreaking that those closest are the ones who get the roughest end of the stick. I feel your pain. But I reckon you're hurting so much because you love her so much. Go with your emotions, not what a distant relative tells you xx

 

[Micky65]

Im sure this is host/hostess mode.
It seems to be a subconscious thing where they can suppress the dementia symptoms when the occasion demands - usually when they are meeting other relatives or authority figures (doctors, police SWs etc) - but they cant keep it up for long and it leaves them very tired and grumpy. I think its a basic survival instinct, very much like animals not showing that they are ill or injured because otherwise their herd will turn on them.

Both mum and OH had/have an incredible host/hostess mode that fooled many a doctor. My mum managed to convince a hospital consultant that she had nothing wrong with her just under two weeks before she died

I read your post and suddenly everything made sense. I was beginning to think I was imagining some things as my husband does not accept that he has Alzheimer’, apparently I do. He can put on a really good show when the doctors or nurses are called out and as soon as the door is shut behind them, he turns on me and is back to his aggressive self. The last time the doctor called, he ended up asking how long our marriage had been struggling because he thinks that it would be better if we got divorced because that is what my husband wants. I had started to believe that he was schizophrenic as he could switch between the two so quickly. At least I know I am not the one who is making everthing up as he regularly tells people.

 

[Scarlet O'Hara]

I couldn't agree more with everything being said here! My Mother has advanced dementia. I cared for her for 4 years until she needed 24 hour care. Each hospital visit / stay or respite stay , it was always a terrific struggle to make the staff understand the true extent of Mum's capacity limitation when she always gave such a good impression of somebody without dementia to everyone except the immediate family. It used to drive me nuts! The worst of all though is how her care home have behaved. After three years of being there and it being in her care plan from Day 1 that she needs a dairy free diet, the manager retired and the interim manager decided, without telling any next of kin (we have power of attorney) that Mum had capacity to make her own decision about her diet and she was now going on a dairy diet. They even got an advocate in to assess her (for 5 minutes) as having capacity, again without us knowing anything about it. You can imagine how angry and upset I was about all of this. Mum gave the impression that she understood all the questions about her diet but what they didn't take into account was that she had absolutely no memory whatsover of being dairy free for 20 years for digestive reasons. A lot of dairy can make her bleed internally but the care home just weren't listening to any of this and told me my PoA had no authority whatsover as it only comes in when there is loss of capacity and Mum had full capacity! It took a lot of effort and phone calls and threats of legal action before I got it overturned, her dairy free diet reinstated and an apology. They could have killed her!! So guys, I know exactly where you are coming from and I feel your pain!!

 

[WellSupport3d]

This is the first time I have put a message on this forum so here goes!
My Mum seems to be great with the carers in the care home but when I visit she tells me she wants to go to live somewhere else. They tell me she is fine and then she gets very upset with me. I did not know this behaviour has a name so thank you for enlightening me in this difficult journey.

 

[Shedrech]

hello @WellSupport3d
just to offer a warm welcome to posting on DTP
I hope reading about 'host mode' has helped reassure you ... what your mum says will be familiar to many here
keep posting ... sharing experiences does help

 

[Sich]

I have the same problem when some people who see my husband only see the previous competent person he once was, but he can only keep that up for a certain length of time. Afterwards he is always extra tired and even sometimes irascible. It isn’t easy but i know the truth, as does his daughter and mine.

on another subjevt , what help do other people get in caring for the dementia sufferer? I keep seeing requests for money but i dont yet know or understand what help is actually available.

 

[Izzy]

what help do other people get in caring for the dementia sufferer? I keep seeing requests for money but i dont yet know or understand what help is actually available.

You might find these links helpful -

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

Benefits for people affected by dementia

If you are living with dementia, or caring for someone with the condition, you may be eligible for some benefits if dementia affects your ability to work, or if you have extra costs because of it.

www.alzheimers.org.uk

 

[goody2 shoes]

My mother is in hospital recovering from a fractured neck of the femur. My husband and I went in yesterday which was a week after her op. She has been more confused than normal but there has been a slight improvement at this stage....but she is still cognitively worse than is normal for her. She is not doing much physio yet, only a little with a ward therapist. I am hoping she will go to a rehab centre when she leaves the hospital.

My older cousin, who is about 10 years younger than my mother, went in to see her today. She used to be a nurse. This is the first time she has actually seen my mother since some time before the pandemic began and before Mum actually got her diagnosis. I have told this cousin that my Mum now has dementia and things have been hard. Before she visited today I told her that Mum was more confused than normal. This cousin reported back to me tonight to say that she stayed 2 and three quarter hours with my mother and was able to help her in many ways and even got the nurse to find a wheelchair to get her to a toilet and that she is fine and wasn't confused at all!

Apart from the fact that my husband witnesses what I witness and agrees with what I see about my mother's confusion, I would feel like I am going quite mad. Why is it only me(and him...and our son) who see it? Could she be only doing the dementia confusion for me, for us? It makes me feel judged for saying that my mother has dementia - that awful daughter who keeps making out that she is worse than what she is.

Sorry this is a bit of an emotive rant. I will say that I have had somewhat of a rest whilst my mother is in hospital - which is my guilty but honest truth. Before this fall, and breaking of her femur near the hip, I did not visit my Mum all of the time but it had become approximately every other day, more recently virtually every day to sort something out. However my connection to her, my being on duty is constant....in terms of responding to her problems, communicating with the care agency, taking her for appointments, going to make a shopping list(because she now get's confused making it), then getting her shopping, speaking to her GP, getting her blister packs amended, taking her for coffee or lunch sometimes. I do it out of duty and to alleviate my guilt. My relationship with my mother has had some turbulent times throughout my lifetime.

It was very interesting reading about your mother. When my husband speaks to doctors, neurologist or the dementia advisor they don’t see the same person as I do day in day out. He’s chatty and appears to be reasonably ok tells them that we are always keeping busy doing all sorts of things ?‍♀️. In reality I might ask if he would like to go out and he’ll say no not really. We do go on a well-being walk once a month and Age UK home support options come once a week for 2 hours. He can’t understand why I am so tired especially when some nights he’s up and down or fidgety. Even when he sleeps all night he doesn’t understand that I am relayed upon all day every day. Not sure how he thinks things get done ?.
It seems that when they talk to other people they have to make out that there is nothing wrong with them at all, like they are living in another world to the real one.

 

[Dreamdogs]

My mother is in hospital recovering from a fractured neck of the femur. My husband and I went in yesterday which was a week after her op. She has been more confused than normal but there has been a slight improvement at this stage....but she is still cognitively worse than is normal for her. She is not doing much physio yet, only a little with a ward therapist. I am hoping she will go to a rehab centre when she leaves the hospital.

My older cousin, who is about 10 years younger than my mother, went in to see her today. She used to be a nurse. This is the first time she has actually seen my mother since some time before the pandemic began and before Mum actually got her diagnosis. I have told this cousin that my Mum now has dementia and things have been hard. Before she visited today I told her that Mum was more confused than normal. This cousin reported back to me tonight to say that she stayed 2 and three quarter hours with my mother and was able to help her in many ways and even got the nurse to find a wheelchair to get her to a toilet and that she is fine and wasn't confused at all!

Apart from the fact that my husband witnesses what I witness and agrees with what I see about my mother's confusion, I would feel like I am going quite mad. Why is it only me(and him...and our son) who see it? Could she be only doing the dementia confusion for me, for us? It makes me feel judged for saying that my mother has dementia - that awful daughter who keeps making out that she is worse than what she is.

Sorry this is a bit of an emotive rant. I will say that I have had somewhat of a rest whilst my mother is in hospital - which is my guilty but honest truth. Before this fall, and breaking of her femur near the hip, I did not visit my Mum all of the time but it had become approximately every other day, more recently virtually every day to sort something out. However my connection to her, my being on duty is constant....in terms of responding to her problems, communicating with the care agency, taking her for appointments, going to make a shopping list(because she now get's confused making it), then getting her shopping, speaking to her GP, getting her blister packs amended, taking her for coffee or lunch sometimes. I do it out of duty and to alleviate my guilt. My relationship with my mother has had some turbulent times throughout my lifetime.

I know where you are coming from I keep begin told how great my mum is doing this is not the case. She is really good at making out she fine it's only me who really sees the real person even the doctor thinks I am making it up and she not that bad. It makes things hard as people think you have it easy and can't see how much you have to do it drives me crazy. It's not you some people just don't see it.

 

[Muttimuggle]

I am quite amazed by the response to this host/hostess topic. As Nice Debbie said -

"Sounds like this is a two-way thing - ie not just the visitor who doesn't see what you see, because they don't understand dementia, but also that your loved one makes a huge effort with people they don't see very much".

That's very true....and both parts can be disturbing and often make you feel like you are going mad. As a relatively new member myself, I also only learned, fairly recently, that this thing had a name, that it was something quite common to many dementia situations. I learned it on here from other members who had "been there and got the T-shirt".

It is a sad situation(for the carer). My mother has shown signs of dementia for many years before any diagnosis. It has caused problems within our family, those who thought I was exaggerating or speaking unkindly or out of turn about our mother- when all I really wanted was for them to become as involved as me in order to see what I saw. I really wish I could change things for the future for carers who are in this position. I really wish that the medical profession could be made more aware of this, could take this into account and be ready to see this unfold.

And it is good that one's loved one can actually make that extra effort to present themselves in a good light.That has to be a good thing but how do we make the world more aware that this may not be the normal reality?

On a more positive note, that cousin of mine who didn't really recognise the reality phoned recently. The first thing she asked was how I was. I told her what has been going on of late (and there has been quite a lot) and I got the feeling that she was actually acknowledging how things really are. She said that if I would like any help in my search for the right care home she could come with me - which was nice. Now the only person who needs to "get up to speed" is my brother, the brother who escapes anywhere and everywhere and as often as possible...in short, makes himself largely unavailable, and has been critical of what I am doing and unwilling to help. It does hurt. He has never acknowledged any of my interventions, such as the introduction of carers, as being a good or right thing to do. He has never told me that his perception of mother being fine and that I should just leave her alone was wrong or misguided. Ah well.

On another good note my mother, whilst in the rehab unit for 6 weeks, is repeatedly saying that she needs to sell her house and asking can I sell it for her. She now is acknowledging that she cannot go back home and that being amongst others and hands on help is good for her. And, interestingly enough, I am talking with a lot of potential care homes at the moment and although they do not give hostess/host mode a name they know exactly what you are talking about. They have seen it all before.