Silence

[Vic10]

So, I know many of us live in a home that lacks conversation and communication.
Having gone through the argumentative stage I prefer the silence although it makes me sad and lonely.
My OH generally responds when I speak to him but recently there is a change. A few days ago when I was in the kitchen he came to get me, he didn’t speak, just took my hand and led me to the living room and pointed to the tv which had turned itself on to stand by mode, I took the remote turned it back on asked if he was ok and got a nod in response. When I say Good Morning or hello instead of a reply he just waves to me! He seems content enough but seems to avoid speaking.
It’s so sad.
But then about 3 weeks ago we had a visit from the Memory Clinic and had an Oscar winning performance! He chatted, joked, laughed and bantered with her, I barely recognised him! Why can’t he be like that with me and my family?
Now that makes me sad and angry!

 

[canary]

There is lots of silence in my home too.
The way he responded to the Memory Clinic is a well known phenomenon that is known on here as "Host Mode". Its a subconscious survival instinct to try and seem normal, but it takes a lot of effort, they cant maintain it for long and it leaves them very tired afterwards. It is usually reserved for medical people and friends/family that they dont see often.

Its very irritating, because the other people dont see what we see, but there is no point in getting angry about it, he is not doing it purposely, however much it looks like it

 

[nitram]

I agree with 'host mode' and the problems it can bring.

Take comfort that he still understands the situation, unable to easily construct a verbal response he uses other means.

 

[Lirene]

My husband is exactly the same he is totally lost, as am I. My heart is breaking as I’m sure yours is also. Prayers, love and hugs xx

 

[jenniferjean]

Oh bless you @Vic10 , try not to get upset. Like @canary says, it's host mode which takes a lot of effort. His trust in you is that he doesn't need to put on such a performance. Well that's how I see it.

 

[Grannie G]

Hello @Vic10

Your husband is communicating with you which is a blessing even though the silence is lonely and isolating. As you say, it`s preferable to arguments and aggression. It`s possible he is losing his language even though he was able to `perform` for the memory clinic.

When my husband was losing mobility, we had a visit from a physiotherapist. My husband performed in true host mode, obeyed every instruction and almost pirouetted around the room. No one would have known how unsteady he was and how in danger he was of falling.

This `host/hostess mode is so difficult to understand. It seems to make liars of us all. The only comfort is it does affect so many of us.

Lack of proper communication is lonely and isolating I know, which is why so many of us are grateful we are able to off load here.

 

[Olliebeak]

I agree about host mode when we see friends and family. To be followed by comments like “he’s not too bad at all is he” and “he still remembers lots of stories”. (Only if they happened 50 years ago and then could be very muddled!)

The worst was his ex who wanted to come and see him. The rudest woman I ever met but I agreed to her visit. He was on sparkling form. I asked how she found him. “He’s fine - just older!” Nobody has a clue unless they live the nightmare 24/7.

 

[silver'lantern]

yep the performance is good! so good that people visiting see a different man. but also means less support for me too. I get remarks like......"well how can that be? I had a perfectly good conversation with him 10 days ago!"
and another recently was...... "its hard to believe he has any problem. It makes me wonder if he is putting it on!"
Really?
These people must think I am making up anything I tell them. So I no longer bother telling anyone anything. There is no point. We tootle along in our own little way.

 

[rhubarbtree]

I am with you Vic 10 the silence in this house is deafening. I have an all over the house music system but do not use it as I need to be able to hear what OH is up to. The other day I heard a different sound and he was dismantling the towel rail. If I really analyse OH's chatter during host periods he is either repeating back what others say or making comments about the amount of people or cars or the amount of crockery/cutlery. Not real conversation. A couple of days ago he did come into the kitchen to say he did really like me. A realistic demotion.

 

[mickeyplum]

I fully understand the feelings of all the carers posting on here. Can somebody please tell me if there is any point even trying to converse with my husband of 91 when I get nothing back from a short simple statement except,' Um', or 'That's life'. Am I wasting my breath and energy?
I asked the family to try and engage him in a bit of small talk when they visit so he feels loved and doesn't feel left out but they say that when I try to explain their conversation to him they notice he just hasn't a clue and I 'm only making him more worried about his memory by forcing him into the chit-chat
It's so sad to see him sitting there like a ghost so detached from us all

 

[Louise7]

The fact that your husband is responding to what you are saying, even if he doesn't say much, shows that he is listening to you. As you have said, engaging in small talk makes him feel loved and not left out. My Mum doesn't say much but she seems to enjoy people talking to her, and around her, so don't think that you are wasting your energy in talking to your husband. Maybe try not to keep explaining your family's conversation to him though if it makes him more worried, he can still feel part of the discussions without someone trying to make him understand what is being said. It could be that he can understand a little bit of what is being said but isn't able to verbalise his responses so best not to place him under any pressure to understand/respond. If he is happy listening to what people are saying then I'd certainly carry on talking to him and including him in family discussions even if he isn't able to respond.

 

[silver'lantern]

I don't think I couldn't totally stop trying. I feel they still listen and know things are being said. But cant listen and process and also process a response. Its a complex thing to listen and get a reply ready and carry on listening....maybe just don't expect him to reply/join in, but just to enjoy the fact he is in company. So maybe dont direct questions. But talk about things with them? Talk about the news/weater/jo down the road or even read aloud from the paper or a book. or things like 'you never believe what happened today'...even make things up ...sometimes just a calming voice can be soothing.....even though it might not get a response of a conversation.....but if it gets a response of calm maybe it's 'worth it'. it depends on the relationship and how the PWD reacts. If it stresses them try something else....But from time to time it must be nice, I feel, to have someone take the time to just sit and talk. It can be a thankless task being a carer. it seems all one sided But we keep trying ......

 

[mickeyplum]

I don't think I couldn't totally stop trying. I feel they still listen and know things are being said. But cant listen and process and also process a response. Its a complex thing to listen and get a reply ready and carry on listening....maybe just don't expect him to reply/join in, but just to enjoy the fact he is in company. So maybe dont direct questions. But talk about things with them? Talk about the news/weater/jo down the road or even read aloud from the paper or a book. or things like 'you never believe what happened today'...even make things up ...sometimes just a calming voice can be soothing.....even though it might not get a response of a conversation.....but if it gets a response of calm maybe it's 'worth it'. it depends on the relationship and how the PWD reacts. If it stresses them try something else....But from time to time it must be nice, I feel, to have someone take the time to just sit and talk. It can be a thankless task being a carer. it seems all one sided But we keep trying ......

Thanks so much for the quick replies. Sometimes it feels like I'm going round in circles hoping I'm doing and saying the right thing. Having the advice and the benefit of experience of other carers is really helpful.
My family have said much the same thing as you but I've tended to brush them off, thinking that cos I'm with him all the time I know what he needs. I think I've got the 'mother knows best' syndrome!

 

[silver'lantern]

i some

Thanks so much for the quick replies. Sometimes it feels like I'm going round in circles hoping I'm doing and saying the right thing. Having the advice and the benefit of experience of other carers is really helpful.
My family have said much the same thing as you but I've tended to brush them off, thinking that cos I'm with him all the time I know what he needs. I think I've got the 'mother knows best' syndrome!

I know exactly what you mean and its easy for someone not involved 24/7 to see it differently.... i sometimes get lost in the "wanting others to understand....and I am here 24/7 how could you know" ... we get bogged down with it all. its nice if someone also takes time to talk with us ... carers too about other things other than ..... its a hard task we do and there is no right way...we just find A way.
Coming on here helps i feel ... people here have been through so much and so many different issues there is a wealth of knowledge.